Understanding the Social Security Application Process

When you think of “Social Security,” it’s likely that retirement benefits come to mind. But there’s more to it than that. The Social Security Administration (SSA) has two disability benefit plans that were set up under the Social Security Act, a law that commits the federal government to financially assist those persons who are unable to provide for themselves.

The two plans administered by the SSA are Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). Although the initials are similar, the programs are not. Here is a brief overview of the two disability programs administered by the SSA:


SSI is a needs-based program, meaning that the individual with a disability (or family, if the individual is a minor) must have little or no income and resources. In other words, certain income criteria must be met, whether it is earned through a job or unearned through unemployment benefits or other benefit programs. Assets must be less than $2,000. This includes money in checking, savings and retirement accounts, stocks, bonds, mutual funds and other investments including real estate (other than the home in which the person with a disability is living).

In addition to income criteria, the individual must meet SSA criteria for a disability. This includes physical or mental conditions that severely affect a person’s ability to function and have lasted or are expected to last for more than a year. Although this sounds simple, in certain cases it may not be.

“The SSA does, indeed, make it very complicated,” says Jeanine Geraci, special needs coordinator for Protected Tomorrows, Inc. “Their definitions of what constitutes a disability are sometimes vague and subject to interpretation.”

If disability and income criteria are met, SSI payments are made on a monthly basis. An SSI award, says Geraci, is based on income. The maximum award amount for 2006 is $603 per month (this amount will increase to $623 in 2007).

In most states, those receiving SSI are automatically provided health insurance through Medicaid. However, in a few states, this must be applied for through a separate process. Some states also provide SSI recipients with an additional stipend to be used for food and shelter. Those receiving SSI may work; however the monthly SSI payment will be reduced according to the amount of income earned.


SSDI is a benefit individuals are entitled to based on their work history. The SSA takes money from each paycheck through Social Security taxes to insure a worker in the event that he or she becomes disabled before retirement age (and eligibility for Social Security retirement benefits). A person must have worked a sufficient amount of time (depending on age) before becoming disabled to meet eligibility criteria for SSDI. An individual is eligible for SSDI regardless of assets or any unearned income, such as disability payments, through a prior job.

“[SSDI] is about a claimant’s work capacity more so than about his medical condition,” says Jonathan Ginsberg, a disability attorney from Atlanta, Ga. “SSA is trying to determine whether a claimant has the capacity to perform any type of work.”

To be eligible for SSDI, a person must not only be unable to work in the job he or she worked at prior to the disability, but the individual must be deemed unable to adjust to another type of work due to a medical condition that has lasted for at least one year or is expected to result in death. Medical conditions qualifying an applicant for disability are the same as those used by the SSA for SSI applicants.

Monthly SSDI benefits will not be paid until five calendar months after SSDI eligibility begins. Payment amounts are based on an individual’s lifetime average earnings and the age at which the disability occurred. SSDI recipients may apply for health insurance through Medicare 24 months after becoming SSDI eligible and, in some cases, may qualify for Medicaid, too.

The Disability Application Process

You can begin the disability application process by calling the SSA at (800) 772-1213 for an appointment, which will be held at the Social Security office nearest your home. You will be sent application materials to fill out prior to your appointment. You may also apply online at www.ssa.gov.

It’s important to be prepared for the disability interview. The SSA will send you a “Disability Starter Kit” either for a disabled child or an adult (these are also available online). Some of the information you will be requested to bring with you to the interview includes:

  • Identification for the claimant (birth certificate and Social Security number) and all household members if the person with a disability is a minor
  • Medical records for the individual with a disability, including names of all doctors, therapists, hospitals and clinics that have provided care in the past year
  • A list of medications the individual is taking
  • A list of social services that are providing resources to the individual
  • School records, if the claimant is a child
  • Employer information, if the individual with a disability is working
  • Proof of income (for the entire family if the family member who has a disability is a minor)
  • Proof of assets, including bank statements and any other savings account or investment


During the SSA interview, the claims representative will ask you for all documentation needed to support the disability claim. If medical records are not sufficient to support a disability, the individual with a disability may be requested to have a “consultative exam,” which is an examination by an independent source such as a physician or a psychologist.

It may take up to several months for the SSA to make a decision regarding your disability benefit claim. According to Geraci, as many as 65 to 70 percent of self-initiated disability claims are denied.

“Remember, it is the job of the SSA to minimize the amount of money they pay out,” she says. “[However], it is your responsibility to acquire and maintain all of the benefits for which you or your family member is entitled.”

You may dispute the SSA decision by filing a Request for Reconsideration, which must be done within 60 days of receiving a disability claim denial. In most states, this requires that you provide additional information to the SSA so that they may review your case again. In some states, you must request reconsideration by filing an appeal for a hearing of your case before a judge.

Geraci advises the help of a special needs planner in negotiating the maze of Social Security disability benefits. This person can help you understand the SSA rules and process and help you file a claim for disability benefits and assist with the appeal process, if necessary.

Related Resources

Understanding Guardianship for Adults with Special Needs

by Damon W. Doucet, J.D.

Guardianship is a valuable tool which can be used to protect individuals who no longer possess the ability to make appropriate personal or financial decisions for themselves.  The guardian assumes the duty of caring for the person with disabilities and/or their assets, and the court maintains oversight to reduce the risk of exploitation or abuse by the guardian.

Below you will find answers to some of the most frequently asked questions concerning guardianship. It is important to note that the information provided herein is intended for general informational purposes only.  If specific legal advice is required, please consult with an attorney in your jurisdiction.

Adult guardianship is the legal process by which an individual assumes the role of decision-maker for an adult who becomes unable to make such decisions for himself/herself.

Guardianship can take several forms:

  • Guardianship of the Person, wherein decisions are limited to those affecting the person of the individual with disabilities, such as medical treatment decisions;
  • Guardianship of the Estate, wherein the guardian is responsible for managing the estate of the individual with disabilities.  Guardianship of the Estate is required where a person with disabilities has significant assets, or in cases where an inheritance or other monetary windfall is anticipated;
  • Guardianship of the Person and Estate; or,
  • Limited Guardian of the Person, Estate or both, in cases where the individual with disabilities is determined by the court to retain some capacity for rational decision-making.


Any person may serve as guardian who:

  • Has attained the age of 18;
  • Is a resident of the United States;
  • Is not of unsound mind;
  • Is not under a finding of disability; and
  • Has not been convicted of a felony involving harm or threat to an elderly person or person with a disability, including a felony sexual offense. The court may appoint an individual who has been convicted of a felony other than those noted above, so long as the court finds it to be in the best interest of the ward and there is evidence of rehabilitation. In some jurisdictions conviction for any felony is disqualifying.


Entities may also serve as guardian, including:

  • Any public agency or not-for-profit corporation found capable by the court of providing the care and/or support the ward requires.
  • Any corporation qualified to accept and execute trusts may serve as guardian of the estate.


The process of obtaining guardianship is governed by the laws of each state.  Generally, the individual seeking guardianship must:

  • File a petition for guardianship of the alleged person with disabilities (the “Respondent”), nominating either themselves or another qualified person or entity to act as guardian;
  • Arrange for personal service of the petition, the Rights of the Respondent and a summons on the Respondent.  Service is usually performed either by the sheriff of the county in which the petition is filed, or by private service (in some jurisdictions private service requires court approval) and must be accomplished some specified number of days prior to the hearing date;
  • Provide notice by mail to the respondent’s nearest relatives; and
  • Obtain a medical report from a licensed physician detailing the reason guardianship is necessary.


A Guardian ad Litem may be appointed by the court in cases where the respondent cannot, or will not, appear for personal examination by the court.  The Guardian ad Litem performs an independent investigation of the facts in the case and reports to the court.  After the requirements listed above have been satisfied, a hearing is then held, the evidence is presented, and the court issues a ruling.


The law takes the revocation of a citizen’s rights very seriously and provides the respondent with legal protection in guardianship cases, which are spelled out in the governing statute.

These rights are as follows:

  • The right to object to guardianship;
  • The right to counsel, either chosen by the Respondent or appointed by the court;
  • The right to a jury of six persons;
  • The right to present evidence and confront and cross-examine witnesses;
  • The right to a second independent medical opinion;
  • The right to a closed hearing; and
  • The right not to attend the hearing


When guardianship is ordered by the court, the named guardian becomes an officer of the court and is subject to the oversight of the court.

If guardianship is of the person only, the guardian is required to:

  • Execute a no surety bond or an Oath of Office; and
  • Report annually on the mental and physical condition of the ward.

If guardianship includes the ward’s estate, the guardian is required to:

  • Execute a surety bond in an amount determined by statute;
  • Present an annual budget and an initial inventory of the estate’s assets; and
  • Present an annual accounting of the ward’s assets to the court.


Generally, if guardianship is of the person only, and the ward has no assets, the petitioner usually bears the cost burden.  If the ward has an estate, the costs of gaining and maintaining the guardianship are borne by the ward’s estate.

Examples of the limitations of guardianship include, but are not limited to:

  • No authority for permanent placement in a care facility without court approval;
  • Ward cannot be forcibly medicated, except by order of the court;
  • Ward cannot be kept isolated from any person, except at their request, or by order of the court for the ward’s safety;
  • Ward cannot be prevented from requesting a hearing to seek restoration of rights.


Guardianship is a deprivation of individual rights and should be sought only as a last resort.  If an individual has a disability, yet still maintains the capacity to execute powers of attorney, guardianship is not necessary.  When appropriate, however, guardianship provides two important layers of protection (the guardian and the court), for those who have lost the ability to protect themselves.


Damon Doucet is a Louisiana native, a former non-commissioned officer in the United States Marine Corps and a long time Chicago area resident. Damon is a summa cum laude graduate of Columbia College, Columbia, Missouri, and a graduate of the Loyola University Chicago School of Law, where he was a Dean’s List student and a recipient of the law school’s Leadership and Service Award. He is a former legal intern at the Office of the Cook County Public Guardian and a former judicial intern in the Probate Division of the Circuit Court of Cook County. Damon spent many years in corporate management and served as a staff attorney at an estate planning and probate firm on the North Shore prior to entering private practice. He is  a Master Mason and a member of the Illinois State Bar Association, the Lake County, Illinois Bar Association, the National Academy of Elder Law Attorneys and the America Legion.

Understanding Divorce and the Child With Special Needs

Sadly, one out of every two marriages in the United States now ends in divorce. The many details involved in planning for a child with special needs in a divorce often fall to the wayside, as a myriad of other considerations consume the attention of parents and overshadow important decisions that must be made in the best interest of the child. As a result, parents often find themselves in the unenviable situation of not having a plan in place for their child when the divorce becomes final and each parent must manage independently.

Divorcing parents of a child with special needs have the enormous responsibility of making sure their child will have everything necessary to provide for ongoing quality care and that their child’s assets are protected. For this reason, the expertise of a Protected Tomorrows Advocate is invaluable toward helping families work through and understand the key considerations that must be addressed. Among the specific areas that require careful consideration are special needs trusts, estate planning, child support and future child support obligations, entitlement benefits and instruction letters.

Special needs trusts ensure that the individual with special needs receives consistent, quality care while maintaining eligibility to continue receiving government benefits. Also called supplemental needs trusts, the purpose of this trust is to supplement, but not take the place of, public benefits programs. There are two different types of special needs trusts. The third party special needs trust is a special needs trust which is created and funded by someone other than the individual with special needs. First party trusts are created by, or on behalf of, the individual with special needs using the individual’s own funds or property.

Revising an estate plan and its related documents should be one of the highest priorities for divorcing parents. Wills or revocable trusts, powers of attorney and beneficiary designations all need to be updated to remove the soon-to-be-former spouse. Property designated for a child with disabilities should be designated to transfer to a third party special needs trust. Beneficiary designations should be changed to name the third party special needs trust as the beneficiary. Gifts made to the child with special needs should be designated to the third party special needs trust itself, and not the child.

Properly establishing child support arrangements is critical and often is the area to which parents give their primary focus. A typical child support arrangement does not include payments from a special needs trust as a part of its calculations. Some courts may allow for a decrease in child support payments when funding comes from a special needs trust. Child support for children with disabilities may continue past the age of 18, depending upon state law. It should be noted that child support obligations typically do not end when the parent paying the support dies. In some states, future child support obligations can continue from the deceased parent’s estate.  It is extremely important that child support payments due and payable after the child’s 18th birthday be made payable, via a court order, to a 1st party special needs trust. Otherwise, the child support will be considered the child’s income and could reduce the government benefits available to him/her.

When applying for entitlement benefits such as social security, retirement, disability and survivor benefits, it is imperative that the custodial parent disclose that there is a child with disabilities involved. Failure to do so can seriously decrease, or potentially eliminate, these much-needed benefits that your child is entitled to receive.

It is important that the primary caregiver parent prepare a letter of instruction for the person designated to take their place in the event of their death or incapacity. This letter should include information such as your child’s physicians, regularly scheduled appointments, medications, test results, and other important health care and personal information. The individual who is handling estate planning arrangements should also receive a letter providing the location of all estate planning documents, life insurance policies and other important financial documents. A list of public benefits, contact information for any advisors and special instructions for the transferring of assets should also be provided.

Divorce is difficult even under the most amicable of conditions. Divorce involving a child with special needs can further complicate an already complex and emotional situation. Utilizing the services of a Protected Tomorrows Advocate will give you the expert guidance to make informed decisions and greatly reduce the stress and anxiety that come along with this life-changing situation.

The Guardianship Decision

One of the most important decisions your family can make is to appoint a guardian for your adult loved one with special needs. Guardianship is a valuable legal process which is used to protect adults who do not have the ability to make appropriate personal or financial decisions for themselves. The decision to appoint a guardian requires a great deal of thought and careful consideration and should not be made lightly, as the guardian will take on the very important role of caregiver for your loved one and/or their assets.

Following are some important points to know about guardianship:


  • Guardianship of the Person: The guardian is limited to making decisions which affect the physicality of the individual, such as medical treatment decisions.
  • Guardianship of the Estate: The guardian is responsible for managing the estate of the individual. When an individual has significant assets, inheritance or other monetary benefit, this type of guardianship is necessary.
  • Guardianship of the Person and Estate.
  • Limited Guardian of the Person, Estate or both: Used when the court determines that the individual is capable of rational decision-making.



Any person may serve as guardian who:

  • Has attained the age of 18;
  • Is a resident of the United States;
  • Is mentally sound;
  • Is not under a finding of disability; and
  • Has not been convicted of a felony involving harm or threat to an elderly person or person with a disability, including a felony sexual offense. Under certain circumstances, the court may appoint an individual who has been convicted of a felony other than those noted above, as long as it is in the best interest of the individual and there is evidence of rehabilitation. In some cases, conviction for any felony may disqualify a potential guardian.


Entities may also serve as guardian, including:

  • Any public agency or not-for-profit corporation capable of providing the care and/or support the individual requires.
  • Any corporation qualified to accept and execute trusts may serve as guardian of the estate.



The laws of each state dictate the process of obtaining guardianship.  Generally, the individual seeking guardianship must:

  • File a petition for guardianship of the individual, naming either themselves or another qualified person or entity to act as guardian.
  • Arrange for personal service of the petition, the rights of the individual, and a summons on the individual. Service is usually performed either by the sheriff of the county in which the petition is filed, or by private service (private service sometimes requires court approval) and must be completed within a certain number of days before the hearing date.
  • Provide notice by mail to the individual’s nearest relatives.
  • Obtain a medical report from a licensed physician detailing the reason guardianship is necessary.


A Guardian ad Litem may be appointed by the court in cases where the individual cannot, or will not, appear at court in person. The Guardian ad Litem performs an independent investigation of the facts in the case and reports to the court.  After the requirements listed above have been met, a hearing is held, the evidence is presented, and the court issues a ruling.



The law takes the revocation of an individual’s rights very seriously and provides the individual with specific legal rights. These rights include:

  • The right to object to guardianship.
  • The right to counsel, either chosen by the individual or appointed by the court.
  • The right to a six-person jury.
  • The right to present evidence, and confront and cross-examine witnesses.
  • The right to a second, independent medical opinion.
  • The right to a closed hearing.
  • The right not to attend the hearing.



When guardianship is ordered by the court, the guardian becomes an officer of the court and is subject to supervision by the court.

If guardianship is of the person only, the guardian is required to:

  • Execute a no surety bond or an Oath of Office.
  • Report annually on the mental and physical condition of the individual.


If guardianship includes the individual’s estate, the guardian is required to:

  • Execute a surety bond in an amount determined by law.
  • Present an initial inventory of the estate’s assets and an annual budget.
  • Present the court with an annual accounting of the individual’s assets.



If guardianship is of the person only, and the individual has no assets, the petitioner is generally responsible for the cost. If an estate is involved, the cost of gaining and maintaining guardianship are the responsibility of the individual’s estate.



Examples of the limitations of guardianship include, but are not limited to:

  • Individual cannot be permanently placed in a care facility without court approval.
  • Individual cannot be forcibly medicated, except by court order.
  • Individual cannot be kept away from any person, except at their request, or by order of the court for the individual’s safety.
  • Individual cannot be prevented from requesting a hearing to seek restoration of their rights.


It is important to note that guardianship is not necessary if an individual still maintains the ability to make rational decisions. Where appropriate, however, guardianship provides two important layers of protection, through the guardian and the court system, for those who have lost the ability to protect themselves.

It is also important to note that guardianship is the removal of an individual’s rights and should be considered only as a last resort and after careful consideration. The above information is general in nature.  If you require specific legal advice, you should consult with an attorney.

If you are considering guardianship for your loved one, we recommend you consult with an attorney who is familiar with guardianship proceedings. If you need assistance finding a guardianship attorney in your area, feel free to contact Protected Tomorrows at 847-522-8086 or info@protectedtomorrows.com.

Continuing Education Credits

CFP Continuing Education Credits:

Education Series: 2.5 Hrs (Exam Required)
Click Here to purchase CE Credits

Annuities and Special Needs Trusts: 1.0 Hrs
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A Family’s Perspective on Government Benefits: 1.0 Hrs
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Legislative Update: Advancing Economic Self-Sufficiency for Persons w/ Disabilities 1.0 Hrs
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Taxation of Special Needs Trusts: 1.0 Hrs
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10 Tips to Make Your Child’s Hospital Stay Easier

Whether your child is facing a major surgery or a minor outpatient procedure, going to the hospital can be intimidating. She may have had some unpleasant experiences with tests at the doctor’s office, or she may be very young and confused about what’s happening around her. Whatever the situation, here are some simple ways you can help ease her mind.

Talk to Your Child About Her Hospital Stay

Even a young child can understand some basic information about her hospital stay, and should be encouraged to talk about it with you. For example, you might tell your 4-year-old that he is going to the hospital so the doctor can help him to walk better. Explain that he will make some new friends (the nurses) and that he will be given some medicine to help him fall asleep. Reassure him that you will be there when he wakes up.

An older child may benefit from more information about the treatment or procedure, including a realistic expectation of any pain or limitations she will have immediately after she wakes up and in the days or weeks to follow.

Learn the Hospital Policies and Routines

Call the hospital in advance and speak with the nurse in charge of the surgery or treatment department and the nurse in charge of the recovery unit. Ask them to walk you through the typical procedures you and your child will have to follow once you arrive and when he is in recovery. Knowing this information beforehand will help prepare yourself and your child for this new experience.

For example, if your 7-year-old child is going to need to stay in a recovery area for a long time, find out if visitors are allowed in this area. Also, be sure you understand what tests, medication and procedures your child will have both before and after the treatment or procedure.

Take Advantage of the Professionals and Recreational Areas Available

If your child will be admitted to the hospital for testing, special care or a lengthy treatment, meet with the hospital’s social worker or child specialist and find out what resources they can provide to your child and your family.

Ask if the hospital has special recreation areas, gardens, or even special art rooms that your child can visit while staying in the hospital. If so, make arrangements with your doctor and the hospital staff beforehand to visit these areas regularly so that your child has something to look forward to.

Bring Something from Home

A young child may feel comforted by her favorite stuffed animal or a photo of her pet while she is in the hospital. Check with hospital policies, as some hospitals may not allow these items in certain sterile areas.

For children staying longer in the hospital, decorate their room with photos and other personal items. Encourage visitors to bring something other than flowers or cards, like a new book or something they can play with.

Stick to a Routine When Possible

Staying in the hospital for a long period of time can be very disruptive, especially to a young child. Stick to routines you had at home, if at all possible. This could include watching a favorite TV show each day at the same time, eating meals together as a family, having a regular bed-time story and performing daily hiegene routines.

Another way to keep your child centered and feeling secure is to enforce the same rules in the hospital as you would at home. While it is tempting to let all rules slide because your child is uncomfortable or frightened, setting expectations can give your child a sense of control over her environment and lets her know that you are still a vital part of her care.

Schedule Regular Recreation Visits For Your Child

When a child is in the hospital, it’s common to have lots of friends and family visit during the first few days. Sadly, those visits taper off as time goes by, just when your child needs them the most. Arrange for regular visits from his friends and classmates each day.

Talk to the nurses about visits from the many different volunteers that may come to your hospital, such as harpists, dogs, clowns and play therapists.

Take an Active Role in Your Child’s Care

While you do have to follow certain procedures and policies at the hospital, you are also still the parent and should have an active role in her care. Ask the doctors and nurses questions, and stay informed of your child’s progress. Bathe, feed, rock, and generally provide everyday care for your child whenever possible, especially for young children.

Know When to Step Out of the Way

While you should be informed of all procedures and take an active role in your child’s care, there are times when you must let the doctors and nurses do their work without your interference. This can be during an emergency, or it can also be during a simple conversation with your child. Know when to step back and let someone else care for your child.

Encourage an Active Role from Your Child

Ask your child’s doctor to have a conversation with your child about his care. This is a great opportunity for your child to feel like she has some control over his situation. Encourage him to ask questions or to express worries to his doctor and nurses. Even a young child should be encouraged to interact with his health care providers to lessen the fear of being helpless.

Stay by Your Child’s Side

If your child is having an outpatient procedure or treatment, express your desire to stay with her throughout the preoperative period and to be there immediately when she wakes up.

When your child is in the hospital for a longer period of time, it can be difficult to stay with him all the time due to work schedules or caring for siblings. If possible, take shifts with your partner or another family member to make sure your child has a companion.

While you should try to be with your child often, also remember to take care of yourself. If your child is sleeping well at night, go home and get some rest in your own bed so that you can be at your best the next day. Take coffee and snack breaks frequently throughout the day and be sure to get some fresh air.


Related Resources

Teaming Up with Your Child’s Health Care Provider

Do you consider your child’s health care provider the expert who has all of the decision-making power when it comes to handling medical needs? If so, it may be time to give up that notion. You, as a parent, are a crucial part of your child’s health care team.

If the word “team” conjures up visions of sports, think of what happens during a game. While each player is uniquely talented and knowledgeable, all work together for a common goal. When it comes to your child, that goal is the best possible health outcome.

Parents as Experts

Research shows that when patients work collaboratively with health care providers in making decisions about their own care, health is significantly improved. And this is true in regard to your participation in your child’s health care. After all, you’re the one who lives with his special needs every single day. You are the person who knows all the ins and outs of her daily care. For example, a health care provider can’t know that the medication she prescribed to be taken three times a day takes you 20 minutes to get each dose down your medicine-phobic child’s throat. It’s up to you to ask if there’s another type of medication that can be given less frequently.

Just as a sports team must practice in order to work well together, it takes practice to work well with your child’s health care provider. Fortunately, there are some things you can do before, during, and after an appointment to ensure a good outcome, starting from the very first visit.

Before the Appointment

Much of the groundwork for a successful health appointment must be laid prior to the actual day of the visit. Some steps to pave the way include:

Find the right health care provider. If you will be seeing a primary care provider, try to locate one with a specialty in treating your child’s condition. “Find the people that have dedicated their professional careers to helping this population lead healthy happy lives,” advises Colleen Lindblad, R.N. B.S.N., who owns Kids at Home, a care-at-home agency for disabled children in New York.

Also the mother of a child with cerebral palsy, Lindblad recalls the fear on the face of a primary care physician who had little experience working with patients like her son. “There was a great deal of trepidation in treating my son,” she says. Lindblad eventually was able to handle much of her child’s health care with the assistance of a pediatric neurologist more familiar with cerebral palsy.

Read up on your child’s condition. Contrary to what many people believe, health care providers are becoming accustomed to a more health-savvy patient population. Many of them are even relieved when they don’t need to spend precious time explaining basic facts about a health condition.

Use the library or the Internet to learn everything you can about your child’s disability or medical condition, including common treatments. Remember, though, that not all websites will give you accurate information. Look for government sites or those affiliated with an educational or well-known medical institution.

Choose your appointment time carefully. If your child’s appointment is a first-time visit to a health care provider, or if you believe you need a longer visit to discuss a particular problem in depth, ask the scheduler to allot extra time for the appointment. And consider what time of the day works best for your child. Most kids have more trouble waiting in an exam room when they’re tired or hungry.

Prepare materials to show the provider. Your health care provider has a business to run, and the reality is that he has many other patients besides your child. You may only have a short time for consultation, so you must have everything at hand to present in the most efficient manner. For a first-time visit, this may include a brief history of previous medical care, a list of immunizations given and medications or treatments your child takes, a list of current symptoms or problems and any questions you may have.

For subsequent visits, such as medication monitoring, Peggy Morgan of LaPine, Oregon, mother of a developmentally disabled child and author of “Parenting Your Complex Child,” advises a chart or spread sheet compiled from a daily journal. “When you have a complicated child, it can be difficult to show the health care provider what you’re seeing, such as out of control behavior, appetite changes or reaction to medications. They are much more impressed with data.”

Enlist help. If an unfamiliar medical office turns your child into a holy terror, ask another adult to accompany you to the visit. You may need this person to entertain your child in the waiting area for part of the appointment, while you speak to the health care provider alone.

During the Visit

An office visit may be as short as 10-20 minutes, so you need to make the best use of this time. Some tips are:

Come with an open mind. Even if you believe that your child is not reacting well to a new medication or treatment, avoid drawing conclusions or telling the health care provider what you want to happen — at least initially. Remember that you’re a team, and both sides should present all information before a plan is made together. “Just tell them what’s happening, this is what [you are] seeing, ” advises Morgan.

Listen carefully. After presenting information about your child, listen to what the health care provider says. Take notes if necessary, so that you can refer to them later.

Ask questions. Don’t be afraid to ask questions if you don’t understand something, no matter how “dumb” you might feel it is. If a diagnostic test is suggested, for example, ask what the test involves, why it is needed, and when you will be informed of the results. If the health care provider uses language you don’t understand, ask her to rephrase the statement.

This is your opportunity to ask the questions you prepared prior to the visit, too. Be sure to ask them in priority of importance, in case time runs out.

Make a plan. Work with your child’s health care provider to make a plan. Don’t be afraid to ask for another visit to discuss things more thoroughly if you need to do so. If you need more information about a proposed plan of treatment or a test, ask the provider to recommend appropriate resources for help. And always ask when the health care provider would like to see your child for follow up.

After the Visit

Don’t hesitate to telephone your child’s health care provider if you find, once home, that you don’t understand his instructions. Many times, the office staff can have the provider return your call himself, or will ask him for clarification and then let you know what he advises. And always make a call if your child is experiencing any problem with a new medication or treatment.

Related Resources

Your Guide to the Special Education Identification Process – Step 5

Step 5: Progress reports, reviews and re-evaluation.

Your child’s progress toward the annual goals is measured, as stated in the IEP. You are regularly informed of your child’s progress and whether that progress is enough for your child to achieve the goals by the end of the year. These progress reports must be given to you at least as often as other parents are informed of their non-disabled children’s progress.

Your child’s IEP is reviewed by the IEP team at least once a year, or more often if you or school ask for a review. If necessary, the IEP is revised. You, as team members, must be invited to attend these meetings, where you can make suggestions for changes, can agree or disagree with the IEP goals, and agree or disagree with the placement.

If you do not agree with the IEP and placement, you may discuss their concerns with other members of the IEP team and try to work out an agreement. There are several options, including additional testing, an independent evaluation, or asking for mediation (if available) or a due process hearing. You may also file a complaint with the state education agency.

At least every three years, your child must be reevaluated. This evaluation is often called a “triennial.” Its purpose is to find out if your child continues to be a “child with a disability,” as defined by IDEA, and what your child’s educational needs are. However, your child must be reevaluated more often if conditions warrant or if you or a teacher asks for a new evaluation.

Related Resources

Your Guide to the Special Education Identification Process – Step 4

Step 4: IEP meeting is held and the IEP is written.

The school system schedules and conducts the IEP meeting. When scheduling this meeting, the school staff must:

  • Contact the participants, including the parents
  • Notify parents early enough to make sure they have an opportunity to attend
  • Schedule the meeting at a time and place agreeable to parents and the school
  • Tell the parents the purpose, time, and location of the meeting
  • Tell the parents who will be attending
  • Tell the parents that they may invite people to the meeting who have knowledge or special expertise about the child

The IEP team gathers to talk about your child’s needs and write your student’s IEP. You, as parents, and your child (when appropriate) are part of the team. If your child’s placement is decided by a different group, you must be part of that group as well.

For tips on how to make the most of your child’s IEP meeting, see this informative article.

Before the school system may provide special education and related services to your child for the first time, you must give consent. Your child begins to receive services as soon as possible after the meeting.

If you do not agree with the IEP and placement, you may discuss your concerns with other members of the IEP team and try to work out an agreement. If they still disagree, you can ask for mediation, or the school may offer mediation. You may file a complaint with the state education agency and may request a due process hearing, at which time mediation must be available.

Once services are provided, the school makes sure that your child’s IEP is being carried out as it was written. You are given a copy of the IEP. Each of your child’s teachers and service providers has access to the IEP and knows his or her specific responsibilities for carrying out the IEP. This includes the accommodations, modifications, and supports that must be provided to your child, in keeping with the IEP.

Related Resources

Your Guide to the Special Education Identification Process – Step 3

Step 3: Eligibility is decided.

The next step is to decide if your child is eligible for special education and related services. This decision will be based on the results of your child’s evaluation and the policies in your area about eligibility for these special services.

It’s important that your child’s evaluation results be explained to you in a way that’s easy to understand. In other words, it’s not enough to talk about your child’s scores on tests. What do the scores mean? Is your child doing as well as other children his or her age? What does your child do well? Where is your child having trouble? What is causing the trouble?

If you don’t understand something in your child’s evaluation results, be sure to speak up and ask questions. This is your child. You know your child very well. Do the results make sense, considering what you know about your child? Share your special insights. Your knowledge of your child is important.

Based on your child’s evaluation results, a group of people will decide if your child is eligible for special education and related services. This is often called a “Child Study Team Meeting” or just a “Team Meeting.” Under the IDEA, you have the right to be part of any group that decides your child’s eligibility for special education and related services. This decision is based in part on IDEA’s definition of a “child with a disability.”

You should know that:

  • The IDEA lists 13 different disability categories (listed in the sidebar) under which a child may be eligible for services. (To learn more about these disabilities, contact NICHCY and ask for the Disability Fact Sheets.)
  • The disability must affect the child’s educational performance.
  • A child may not be identified as having a disability just because he or she speaks a language other than English and does not speak or understand English well.
  • A child may not be identified as having a disability just because he or she has not had enough instruction in math or reading.

IDEA’s Categories of Disability

  • Autism
  • Deaf-blindness
  • Deafness
  • Hearing impairment
  • Mental retardation
  • Multiple disabilities
  • Orthopedic impairment
  • Other health impairment (i.e., having limited strength, vitality, or alertness that affects a child’s educational performance)
  • Serious emotional disturbance
  • Specific learning disability
  • Speech or language impairment
  • Traumatic brain injury
  • Visual impairment, including blindness

As a parent, you have the right to receive a copy of the evaluation report on your child. You also have the right to receive a copy of the paperwork about your child’s eligibility for special education and related services.

If your child is eligible for special education and related services (such as speech therapy), then you and the school will meet and talk about your child’s special educational needs (see Step 5). Within 30 calendar days after a child is determined eligible, the IEP team must meet to write an IEP for the child.

If your child is not eligible for special education and related services, the school must tell you so in writing. You must also receive information about what to do if you disagree with this decision. If this information is not in the materials the school gives you, ask for it. You have the right to ask for a hearing to challenge the eligibility decision. Also ask how the school will help your child if he or she will not be getting special education services.

Related Resources

Your Guide to the Special Education Identification Process – Step 2

Step 2: Child is evaluated.

A group of people, including you, will evaluate your child. This group will begin by looking at what is already known about your child. The group will look at your child’s school file and recent test scores. You and your child’s teacher may provide information to be included in this review.

The evaluation group needs enough information to decide if your child has a disability. It also needs to know what kind of special help your child needs. Is there enough information about your child to answer these questions? If your child is being evaluated for the first time, maybe not.

The team of people, including you, involved in your child’s evaluation will tell the school what information it still needs about your child, and the school must collect that information.

Before the school can conduct additional testing, school personnel must ask you for permission. They must tell you what the evaluation of your child will involve. This includes describing (a) the tests they will use with your child, and (b) the other ways they will collect information about your child. Once you give your informed written permission, the school may evaluate your child to collect the additional information it needs.

The school will collect this information in many different ways and from many different people, including you if you have information you wish to share. The group involved in your child’s evaluation will include these people:

  • At least one of your child’s regular education teachers (if your child is, or may be, participating in the regular education environment)
  • At least one of your child’s special education teachers or service providers
  • A school administrator who knows about policies for special education, children with disabilities, the general curriculum (that is, the curriculum used by non-disabled children), and available resources
  • You, as parents or guardians
  • Someone who can interpret the evaluation results and talk about what instruction may be necessary for your child
  • Individuals (invited by you or the school) with knowledge or special expertise about your child
  • Your child, if appropriate
  • Representatives from other agencies that may be responsible for paying for or providing transition services (if your child is 16 years or younger, if appropriate)


Other qualified professionals, as appropriate (such as a school psychologist, occupational therapist, speech therapist, physical therapist, medical specialist(s), or others)

Four Evaluation “Musts”

  1. Using the native language: The evaluation must be conducted in your child’s native language (for example, Spanish) or other means of communication (for example, sign language, if your child is deaf), unless it clearly isn’t possible to do so.
  2. No discrimination: Tests must be given in a way that does not discriminate against your child because he or she has a disability or is from a different racial or cultural background.
  3. Trained evaluators: The people who test your child must know how to give the tests they decide to use. They must give each test according to the instructions that came with the test.
  4. More than one procedure: Evaluation results will be used to decide if your child is a “child with a disability” and to determine what kind of educational program your child needs. These decisions cannot be made based on only one procedure such as only one test.

Tests are an important part of an evaluation, but they are only a piece. The evaluation should also include:

  • The observations and opinions of professionals who have worked with your child;
  • Your child’s medical history, when it is relevant to his or her performance in school; and
  • Your ideas about your child’s experiences, abilities, needs, and behavior in school and outside of school, and his or her feelings about school.


Professionals will observe your child. They may give your child tests. They are trying to get a picture of the “whole child.” It’s important that the school evaluate your child in all areas where he or she might have a disability. For example, they will want to know more about:

  • How well your child speaks and understands language
  • How your child thinks and behaves
  • How well your child adapts to change
  • What your child has achieved in school
  • What your child’s potential or aptitude (intelligence) is
  • How well your child functions in areas such as movement, thinking, learning, seeing, and hearing
  • What job-related and other post-school interests and abilities your child has


Evaluating your child completely will help you and the school decide if your child has a disability. The information will also help you and the school plan instruction for your child.

In summary, the evaluations must assess your child in all areas related to his or her suspected disability. The evaluation results will be used to decide your child’s eligibility for special education and related services and to make decisions about an appropriate educational program for your child. If you disagree with the evaluation, you have the right to take your child for an Independent Educational Evaluation (IEE). You can ask that the school system pay for this IEE.

Related Resources

Your Guide to the Special Education Identification Process – Step 1

Step 1: Child is identified as possibly needing special education and related services.

When Laura was 8 years old, her teacher, Mrs. Adams, saw that Laura was having a lot of trouble with reading and writing. This surprised Mrs. Adams, because Laura was very good at remembering things she heard. She asked the school to check, or evaluate, Laura to see if she had a disability.

The above scenario probably sounds familiar to you, as it’s one of the most typical ways a child is identified for special services. However, there are two general ways your child can be identified:

“Child Find.” The state must identify, locate, and evaluate all children with disabilities in the state who need special education and related services. To do so, states conduct “Child Find” activities. Your child may be identified by “Child Find,” and you may be asked if the “Child Find” system can evaluate your child. You can also call the “Child Find” system and ask that your child be evaluated. This evaluation can be done before your child reaches kindergarten age.

Or —

Referral or request for evaluation. A school professional may ask that your child be evaluated to see if he or she has a disability. You may also contact the child’s teacher or other school professional to ask that your child be evaluated. This request may be verbal or in writing. Your consent is needed before your child may be evaluated. Evaluation needs to be completed within a reasonable time after you give consent.

Related Resources

Your Guide to the Special Education Identification Process

Children with disabilities have the right to free and appropriate education under IDEA (Individuals with Disabilities Education Act). But how do you secure this special education? Can you provide a doctor’s note stating the disability and the recommended accommodations? What if your child has never been diagnosed, but exhibits signs of a disability? Who decides if your child qualifies for special education?

Use this guide to learn more about how a child (ages 3-21) is identified through the school system as needing special services by clicking on the step that applies to you or by clicking on the “next” button to go through each stage step by step.

Step 1. Child is identified as possibly needing special education and related services.
Step 2. Child is evaluated.
Step 3. Eligibility is decided.
Step 4. IEP meeting is held and the IEP is written.
Step 5. Progress is measured, IEP is reviewed and child is re-evaluated.

Related Resources

Making the Most of Your Child’s IEP Meeting

When your child’s school acknowledges that your child needs accommodations for his disability, it’s time for an IEP meeting. Some parents feel intimidated by this process, while others see it as an opportunity to work with the school to create an optimal learning environment for their child. Here are some ways to make the most of your child’s IEP meeting.

The Right Support

When attending the IEP meeting, it is particularly helpful to have two sets of ears to process what is being said. As a parent, you are entitled to bring an advocate to the meeting as long as you inform the school that you are doing so. However, an advocate can sometimes convey a message to the professionals that you do not trust their work. In order to best facilitate a positive relationship with the school, attendance by both parents is particularly meaningful.

For parents, that could be very challenging, as work schedules may conflict with meeting times. But attendance by both Mom and Dad demonstrates a strong family commitment to your child. If your spouse cannot attend, or if you are a single parent, consider inviting a close family member or friend who knows your child well.

Preparation is the Key

One of the most important elements is to be highly organized as you head into the IEP meeting. By planning ahead, including making a list of all pertinent questions prior to the meeting itself, you will maximize your time with the professionals involved.

Prior to the meeting, request copies of any testing that has been done, as well as any behavioral assessments or teacher observations that may be presented at the meeting. Take the time to read those documents so that you will fully grasp the essence of what the professionals report at the meeting.

In reviewing the test documents, you may find you need further explanation. If so, request a separate session with the test examiner prior to the IEP meeting to review those results. You might also consider discussing the results with your child’s health care provider and see if they have specific recommendations for accommodations

Ask Questions

At the meeting, as materials are shared, be aware that many educators use acronyms for a variety of educational terms. The IEP is just one example, the PET process another, WISC testing a third. Whenever such acronyms are used, be sure to ask that they are clarified. Many special education teachers deal with these terms daily and the shortened versions are simply easier for them to use.

In addition, ask clarifying questions regarding proposed therapies or accommodations. Discuss proposed services and therapies to determine if any disruptions will occur in your child’s current schedule. If the therapists who will be working with your child are not present at the meeting, be sure to set up a meeting with those professionals to ask further questions.

Understand Your Role

Remember that you, as the parents, are an integral part of the IEP team. Federal special education law requires that IEP teams include the parents of the child. As the school staff review the relevant assessment data and observations, listen carefully to what they are saying to be certain that what you are hearing is consistent with the reports that you have read and what you know about your child. Be willing to share information about your child’s behaviors and accommodations at home and outside of the school setting.

At the same time, do not be defensive if some aspect being shared is not as positive as you would like to hear. It is the responsibility of the professionals at the table to compile the data and observations to provide an appropriate plan for your child. Remember, in order for your son or daughter to be successful, issues must be discussed frankly if they are to be fully addressed.

Most importantly, remain focused on the larger picture and seek help from the professionals to formulate the specifics of the plan. Actively discuss your child’s plan and ask questions, suggest your own ideas, and get copies of all documents formed at the meeting, including the IEP document itself.

Become a Team

Seek to develop a positive relationship with the classroom and special education teacher, the case manager, and the special education director. Developing a collaborative relationship with the professionals involved with your child ensures a collective approach to his or her wellbeing. Those professionals will be far more apt to call you with concerns or issues if they feel that you will work together towards solutions.

Finally, always seek out active approaches that you may use with your child at home to reinforce the school’s method for addressing the relevant issues. Raising a child with special needs today is an enormous challenge, but it becomes far more manageable when everyone involved is working collectively toward a common goal.

Related Resources

10 Ways You Can Advocate for Your Child With a Learning Disability

Did you know that you are the most important person in your child’s life? Of course you did. But did you know that parents of children with learning disabilities can also be their child’s most effective advocate? What exactly is an advocate? An advocate is someone who speaks up for someone else, or who acts on behalf of another person. As a parent, you know your child better than anyone else, and you are in the best position to speak for him and act on his behalf.

Here are 10 ways to best advocate for your child:

  1. Realize from the beginning that advocating for your child takes a lot of time. Advocating involves a great deal of research, meeting time, and communication. That’s a given. But the end result will be a successful, responsible, happy young adult who will be able to survive the pitfalls of the real world.
  2. Be informed. The more you know about what is going on with your child, the more comfortable you will be in helping others understand him. Here are some ways you can become informed:
    • Read all you can about learning disabilities (especially your child’s learning disability).
    • Attend conferences. That’s a great way to learn and make contact with other people faced with similar issues.
    • Ask questions — seek answers.
    • Join a support group if there is one available. You can learn a lot from the support of others dealing with similar situations.
  3. Become familiar with the rules and regulations that apply to your child’s special education program. Request copies of the regulations from your local school district office (the special education office, if your district has one) or from your state Department of Education. If you have difficulty understanding these rules and regulations, don’t be afraid to ask the special education director or your child’s special education teacher to explain them to you.
  4. Work together closely with the professionals who work with your child. This should be done in a positive, cohesive way in order for your child to gain the maximum benefit. Get to know these people — talk with them on a regular basis. Volunteer in the classroom. Don’t be afraid to ask for a meeting with the teacher(s) if you see something going on at home that can be helped at school, or vice versa.
  5. Keep track of the paperwork that is given to you at IEP and 504 Plan meetings. This is valuable information that should be kept in an organized place so that you can refer to it easily. If you aren’t sure how to do this, talk with the special education director or special education teacher. They have a system to keep the records organized in the office. Perhaps they would share that with you.
  6. Don’t be afraid to communicate with the professionals. Be prepared when you go to meetings, and don’t be afraid to calmly and assertively state your views. Take notes into the meeting with you so you won’t forget the questions you want to ask or the points you want to make. Remember, the professionals need insight from you as much as you need insight from them. The more communication you have, the more powerful the educational team to help your child.
  7. Don’t be afraid to ask questions. The field of special education is as complex as your child’s needs. Asking questions doesn’t mean that you are stupid. It just means that you are interested in your child’s education and well-being and want to be an informed parent. You will most likely hear the professionals asking lots of questions as well!!!
  8. Keep the lines of communication open with your child. Talk with him about his life both in and outside of school. Allow him to express his frustrations, his successes, his disappointments, his hopes, his likes and his dislikes. The better you know your child and what is going on with him, the better you can help other people to work with him.
  9. Know your child’s strengths and weaknesses and share them with the professionals. Children with learning disabilities, although they have weaker areas, have many strong areas, too. By highlighting these areas, it makes it easier for the professionals to use them as tools to strengthen the weaker skills. It helps them see the child in a more positive light, and it helps them relate to the child. And it helps your child’s self-esteem to know that the teachers see good things in him.
  10. Help your child learn to advocate for himself as early as possible. As time goes on, and your child has heard you advocate for him, he will be able to understand how to advocate for himself. If he’s heard you say positive things, not only does it increase his self-esteem but it gives him the confidence to speak up for what he needs. Teach him how to communicate how he learns best, what he needs to help him get the most from his classes, and how he feels when confronted with certain issues, such as testing and peer pressure. Give him the power to make his life a success.
Related Resources

James O’Keefe is the owner of My Millionaire Friend, offering free articles, tips, hints, and real-world advice on how to make money with your website. Visit his site or join his free newsletter by sending a blank email to jim1@theultimateebook.com.


Helping Students with Cognitive Disabilities Find and Keep a Job

Having a job can be exciting, fun, hard work, scary, and full of new skills to learn and master. This is as true for young people with cognitive disabilities as it is for those with other disabilities or no disabilities at all. In the past, many people with disabilities didn’t have jobs. This was especially true for people with mental retardation and those with autism. Today, fortunately, the employment prospects for such individuals are changing (President’s Committee on Employment of People with Disabilities, 1997). Young people with these disabilities are learning important skills in school and on the job. These skills are proving useful to employers, and so are the other talents that people with disabilities bring to the workplace.

How do typical young people become employed? Most look in the help wanted ads or find out about job openings from friends or relatives. They may go to an interview, give their resume to the prospective employer, and, if all goes well and they have the skills necessary, they get the job.

Youth with disabilities sometimes follow this path, but more often they need help in finding a job. The amount of help they need will depend on a number of factors, including:

  • the job market at the time;
  • what type of job they’re interested in,
  • how much training the job requires,
  • how much training they themselves have, and
  • what type of disability they have.


For youth with cognitive limitations, special employment challenges exist, so they are likely to need extensive support in finding and keeping a job.


Who’s Involved?

Any number of individuals can be involved in helping the young person find and keep a job. But the most important person to be involved is the young person!

The young man or woman must be at the center of all employment considerations. He or she is the one who is going to be doing the job. Many people may give support, may supervise or provide training to the young person, and may invest their heart and soul in seeing that the young person succeeds, but the bottom line is that this is the young person’s job.

Given that, it’s important to consider what the person is interested in. What is he or she good at? What are his or her support needs? What type of a work environment does the person prefer? These questions need to be answered when others are involved in helping the youth find a job that’s satisfying or, at the very least, is a learning experience upon which to build future opportunities.

In addition to the student, who is likely to be involved in the student’s job search and eventual employment? Depending upon the age of the young person and whether he or she is still in school, some or all of the following individuals may be involved:

  • the parents or guardians;
  • a transition specialist at the school;
  • a job development specialist or a vocational rehabilitation counselor;
  • friends or people from the community who know the young person; and eventually
  • the employer.


Parents (or guardians) have long been particularly effective participants in their sons and daughters’ employment. As the Technical Assistance on Transition and the Rehabilitation Act (TATRA) Project, states: “Studies demonstrate that family members play crucial roles not only in career preparation, but in actual job search efforts. The kind of support families often provide are:

  • ideas about the type of work an individual likes and is able to do,
  • suggestions about where to look for a job, and
  • assistance with transportation.” (TATRA Project, 1996)


Transition specialists may become involved through the public school system when the student reaches the age where transition planning begins. This specialist helps the student by way of a variety of activities, such as:

  • working with the student to identify preferences and goals;
  • setting up opportunities for the student (or a group of students) to learn about different careers through such activities as watching movies about careers, job shadowing, visiting different job environments, and hands-on activities that allow the student(s) to try out a job or aspects of a job;
  • looking at what skills the student presently has and what skills he or she will need in the adult world;
  • recommending coursework that the student should take throughout the remainder of high school to prepare for adult living (recreation, employment, postsecondary education, independent living);
  • identifying what job supports the student needs;
  • helping the student assemble a portfolio of job experiences, resumes, work recommendations, and the like; and
  • making connections with the adult service system.


Rehabilitation counselors and job development specialists can be involved in a student’s transition planning while the student is still in school. The rehabilitation counselor typically works for the state’s vocational rehabilitation (VR) agency, helping people with disabilities prepare for and find employment. For students who are eligible for VR, a wide variety of services are available, including: evaluation of the person’s interests, capabilities, and limitations; job training; transportation; aids and devices; job placement; and job follow-up.

A job development specialist usually works for a school system or an adult service provider agency such as the vocational rehabilitation agency. As the job title suggests, the chief activity of such a specialist is finding jobs for people with disabilities. Supported employment makes great use of job development specialists. The job development specialist will usually approach an employer to see what positions may be available that match the prospective employee’s abilities and preferences. The job developer may offer the employer specific services, including:

  • placing the person on the job;
  • training the employee on job tasks and appropriate workplace behavior (this is usually done by a job coach, who works intensively with the individual);
  • talking with supervisor(s) and coworkers about disability awareness;
  • providing long-term support to the employee on the job; and
  • helping to promote interaction between the employee and his or her co-workers (PACER Center, 1998).


The key participant in the employment quest of the person with a disability is, of course, the employer. In the past, many businesses and organizations have been reluctant to hire people with disabilities, but in today’s marketplace, a great many employers are now discovering the benefits of doing so.


Related Resources

Coaching Myself Out of a Job: What to Expect When Working with a Job Coach

The role of a job coach is not that different from the role of a sports coach: help someone reach their maximum potential.

While no one enjoys someone standing over them as they attempt to buckle down to the business of the day, it’s important to remember that a job coach is not your boss or supervisor. They work for you, technically speaking, and should be providing the support and encouragement that you need to learn a new job or reacquaint yourself with an old one.

When I worked as a job coach for the Ontario March of Dimes and other organizations, in work environments that ranged from factories to auto body shops to hotel laundry rooms (one assignment was to help a client build a chip wagon in his garage), I learned that a considerable part of the job is learning to stay out of the way. While a job coach is generally expected to set reasonable goals for their clients, always working towards the employer’s idea of full productivity, an effective coach will do everything possible to gradually eliminate themselves from the equation.

Having a “buddy” shadowing you around all the time can very easily create a social stigma in the workplace. I’ve seen so many coaches go about it wrong, furiously filling their notebooks with their client’s every word, gesture, or nuance. No one likes to feel judged, we have long outgrown babysitters, and very few people enjoy constant over-the-shoulder surveillance. A good job coach knows when to fade away.

A job coach obviously has a long list of responsibilities to attend to before they plan their vanishing act. These can range from finding a job placement or unpaid “work trial” for their client, assessing the work environment for accessibility, determining their client’s barriers to success, and working with them to overcome them.

A normal “return to work” action plan will involve a steady increase in hours worked (accompanied by a steady decrease in the presence of the job coach) until a full-time working day is achieved. The job coach should be available for follow-up after the period of direct one-to-one coaching has concluded. The truth is, most clients are glad to see their coach go, despite any bonds of friendship that may have formed. The departure of this benevolent overseer signifies that they are just another worker now, reliant on their own merits rather than on any special assistance.

What can a client expect from a job coach? How can they benefit from the experience? First of all, try to accept your coach’s advice. Remember that their motives are pure (no one would become a job coach for the money). They should respect your space, be reasonably unobtrusive, and should function as a calm, supportive presence. Ideally, your work should improve a little each day as you incorporate their suggestions. Ultimately, you should begin to operate in a smoother, more efficient manner.

There’s a tried and true maxim: ‘Never do for someone else what they are capable of doing for themselves.” A job coach should never do your job for you! They are with you for a short time to help you succeed in the job that you are qualified to perform and paid to do. I also believe that you should be allowed to see their written notes and observations upon request. That’s not a novel they’re working on back there! It’s about you!

I ended up becoming quite chummy with most of my clients, something I credit in part to my commitment to being as non-distractive as possible. A little levity didn’t hurt either: there’s no doubt that this world suffers from a laughter deficiency. I’ll even confess to taking the odd wander about the workplace. Sometimes it was questionable who or what exactly I was watching and, on at least one occasion, I was branded as a spy from head office.

It’s very important for a coach not to interfere with the social aspects of the workplace: you should be able to spend your coffee breaks and lunch hours with your peers, unencumbered by a perpetually looming bodyguard. Work is our primary place to socialize, after all, and a job is a great place to develop and refine people skills. Unless absolutely necessary, a job coach must resist the urge to act as the primary advocate for their client in their dealings with their co-workers, and, especially, in their dealings with their boss. Employer’s needs must be high priority. Their perception of people with disabilities and their willingness to hire them in the future may depend on a positive outcome for this “work trial.”

A steady job is essential not only for food and shelter but also for the preservation of one’s self-esteem. An effective job coach should gently guide you towards full independence. Coaches seem to be subject to a lot of turnover in the world of professional sports – they are first to be blamed if their team has a losing season. Most job coaches, on the other hand, are in it for the long haul, mainly because they genuinely want to help. Your success is their success!

Related Resources

JASON RIP is a freelance writer, teacher and playwright from London, Ontario, Canada, where he runs his own theater company, Theatre Nemesis. He has many years experience working with individuals with special needs. His personal website can be found at www.theatrenemesis.com.

Social Security and Medicaid Benefits That May Be Available to You

SSI monthly payment (single)
SSI monthly payment (couple)
SSI asset limit (single)
SSI asset limit (couple)
Substantial Gainful Employment
(the amount you can earn per month and still retain benefits)
($8,950 Annual)
($9,230 Annual)
Trial Work Period
(amount you can earn before the SSA begins to review your disability)
Credit earnings for coverage
(the amount you must earn in order to accrue 1 credit towards SSDI)
Medicaid Standard of Need (amount you can earn before you incur a spenddown) AABD
SNAP – Food Assistance Max Allotment
Monthly HBWD Income Allowance


Whether you have been a part of the special needs community for a long time, or have just joined, there are many terms, jargon and acronyms that can be confusing. Below you will find some definitions that we hope will help you find your way. Hear or read something that is not on the list but needs to be? Let us know!

  • IEPIndividual Education Plan. This is the Title V plan for every child with special needs. These plans are supposed to be updated annually (or more frequently if needed). IEP meetings should include parents, teachers, any individuals who provide supportive services to the student and, if appropriate, the student themselves. At a minimum, every three years the IEP should include a full re-evaluation of all of the student’s strengths and needs.


  • Medicaid – Federally mandated, state run program of medical coverage and other services (see Waiver definition below). Income and asset rules apply.


  • Medicare – Federal program of medical coverage available only to those who receive SSDI. A premium may apply.


  • Medicaid Buy-In – Available in some states, this is a medicaid program in which an individual who meets disability criteria but does not meet the income and asset criteria may pay a small premium and retain Medicaid.


  • Self-Determination Funding – This is the most recent state-based trend for funding of services for individuals with special needs. It is called different things in different states, but the basic philosophy is that the individual and their family have the best idea of the services which are needed for the individual with disabilities. The individual with disabilities is provided a monthly stipend with which they can purchase the services which they deem necessary. These services can include vocational programming, transportation, respite care, physical home adaptations and many other services. This is also considered a waiver program.


  • SGASubstantial Gainful Activity – The term used by Social Security indicating the maximum income someone can earn and still receive benefits.


  • SSDISocial Security Disability Income. Applicant must prove disability from a vocational standpoint. Income rules apply.


  • SSISupplemental Security Income. Applicant must prove disability from a vocational standpoint. Income and asset rules apply.


  • Title V: Education – This is a U.S. Department of Education policy which promotes informed parental choice in education of children with Special Needs. This legislation provides funding to the individual states to administer Title V programs. This funding is designated to ensure that each student receives an individually developed education plan and the necessary supportive services as outlined in that plan. This is the source of the IEP (see above).


  • Title V: Medical – Title V of the Social Security Act requires states to provide preventive medical care and case coordination to children with significant medical needs. Through Medicaid, children with medical needs are entitled to well-child checkups, immunizations, some equipment and supplies and service coordination, as well as Early Intervention for those children aged 0-3. Most of these services are provided by the each state’s Maternal and Child Health Program.


  • Transition – Federal Law requires each school district to provide transition services to all special education students. While a transition plan can begin as early as age 15, the focus of these services is for the student between ages 19-21. Transition services can include vocational evaluation, job trials, job training programs, teaching appropriate work behaviors and any other skills necessary to allow the individual to reach their full potential for employment.


  • Medicaid Waiver – A mechanism by which a state can be reimbursed by the federal government for providing services to individuals with special needs. In order to qualify for waiver services, the individual must have Medicaid. Individual states may impose other enrollment criteria on specific waivers, such as an diagnostic, geographic or age restrictions. Many states are converting all of their residential and vocational services to waiver programs in order to maximize federal reimbursement to the state.There are many different types of Medicaid Waivers which vary from state to state. Some examples of Waivers are:


  • Katie Beckett Waiver – Also known as the Children’s Medical Waiver, Katie Beckett waiver is a program which pays for the supportive medical care needed to keep a child with severe medical needs living in their family home, rather than in an institution. These waivers generally provide nursing care and supportive technology.


  • Senior Services Waiver – This waiver allows senior citizens to avoid nursing care when they have no severe medical needs. Senior waivers can provide adult day care, transportation and companion care.


 Related Resources

Special Needs Planning Series – Part 1: Taking the First Step

The thought of having to create a special needs plan for a loved one with disabilities is, for many families, an overwhelming, daunting and even frightening proposition. The good news is that it does not need to be, especially if you take the process one step at a time.

The eight-step PT planning process was designed to help families tackle every aspect of developing a comprehensive special needs plan. This inclusive process encompasses all aspects of life, from family communications to savings solutions.  Each step of the process covers a specific area of life planning and allows for your family to develop a unique plan that meets your own individual needs. The process requires time, commitment and honesty; but the result is a comprehensive future care plan that will not only provide a full and rewarding life for your family member with special needs, but peace of mind for the rest of your family, with the knowledge that your loved one’s future needs will be met.

The foundation of the process, the First Step, begins by looking honestly and openly into all aspects of your loved one’s future requirements, while at the same time balancing those requirements against the needs of all other family members.  Scrutinizing your family’s financial situation and unique structure are integral to recognizing what work must be undertaken to build a successful plan. This may very well be the first time you are confronting face-to-face the dreams, goals and fears that you have for your family member with special needs. It may seem difficult at first, but this step provides the critical framework upon which to construct your plan.

Focusing on these specific topics is made easier with the assistance of PT Advocates, who will meet with you to candidly discuss your personal situation in detail. In anticipation of your initial meeting with an Advocate, you will be asked to complete a short questionnaire designed to help you think through exactly what your dreams, goals and fears are for your loved one. Providing a brief description of your family in general, and what life has been like with your family member with special needs, assists the PT Advocate in crafting the perfect special needs plan as your family moves forward into the future.

Having a solid, comprehensive special needs plan in place makes the journey into the future a much more secure, and far less apprehensive, one for everyone in your family. Taking the First Step toward completing this process will start you on your way toward accomplishing this task. In addition to meeting with a PT Advocate to get the process rolling, we encourage you to also take advantage of several valuable 90-minute PT workshops that will be held each month. Making plans to attend a workshop is as easy as contacting Protected Tomorrows at 847-522-8086 or info@protectedtomorrows.com.

Tips for Traveling: A Checklist for Parents of Children with Special Needs

Will you be traveling with your child this holiday season?

We interviewed parents of children with challenges ranging from hearing loss to quadriplegia. They agreed that parents should prepare for traveling with their child who has special needs just as they would for any other child. Parents need to consider what accommodations may be necessary and plan for them.

Plan Ahead

“Our preparations for [our son] aren’t much different from what we do to keep our non-special needs daughter happy in the car,” says Janinne Berlin of Milford, Conn., whose 6-year-old son has fragile X syndrome. Berlin makes sure she brings along plenty of distractions, food and water for her son, just as she does for her daughter.

“Adapt regular equipment when possible,” she says. “At some point, kids need to get used to regular equipment. Don’t worry about mess – you’ll be far more sane.”

John M. Flanders’ 13-year-old son Nate has profound hearing loss. “I think the biggest problem … is that his condition is invisible to people,” says Flanders, a Cromwell, Conn.-based special education attorney and member of the Council on Developmental Disabilities.

Travel Checklist

Parents can use these tips to help ease some of the stress associated with traveling:

  1. Plan well ahead.
  2. Include your child in the planning to the extent possible.
  3. Choose vacation spots with your child’s abilities and challenges in mind. For example, if your child has behavior problems, choose a family restaurant rather than a fancy dining establishment.
  4. Make all reservations with a live person so you can explain and discuss your child’s specific needs and available accommodations.
  5. Ask very specific questions about the accommodations your child needs. For example, ask about shower seats, walk-in showers, high or low toilet seats/adapters, ramps, noise levels in common areas and anything else that will affect your or your child’s experience.
  6. If you have questions about required accommodations, visit www.access-board.gov or www.ada.gov or call the ADA for more information at: (800) 514-0301.
  7. Learn about routine practices at your destination that may cause problems. Many resorts maintain offices specifically to help their visitors.
  8. Bring along all the equipment your child normally uses, such as a wheelchair, canes, crutches, walker and medications, etc. Box what you can at the airport to check with your other checked luggage.
  9. If you have younger children, be sure to bring games, toys, etc. to keep your child entertained, just as you would do for any child.
  10. Give yourself lots of extra time. Then allow even more time.
  11. Keep a positive attitude. It encourages others to help you.
  12. Travel with lots of small bills so you can tip those who help you.

Flanders has found that airplane travel presents some unique challenges. “Airplane noise is a problem,” he says. “The main thing we have to insist is that he [Nate] be near us.”

And of course there’s the issue of airport security. Nate uses an FM radio transmission system when he travels, so getting through airport security can be a challenge. According to Flanders, however, security personnel are generally understanding.

“One of the best sources of information is the U.S. Access Board,” Flanders says. “It’s a federal entity that was founded to help implement ADA standards.”

Flanders also advises parents to ask specific questions about necessary accommodations and any other factors that might affect a child. For example, when the Flanders family visited Disney World, they had to avoid allowing water spray to hit Nate’s hearing aids.

Make it Fun

Cissie Molinaro of Corinth, Miss., traveled by car with her now-adult daughter Olivia, who has profound hearing loss. While it was difficult to speak with Olivia during the ride, Molinaro says Olivia was satisfied entertaining herself during their travels.

“What we always did when we took long trips was to take coloring books, small toys, that sort of thing,” Molinaro says. “[We took] a bag of surprises that they could only open when we got down the road a little: puzzles to work, books to read, coloring books and small toys. They always thought it was really neat.”

Like Molinaro, Eva Greenwald of Westport, Conn., carefully packs a number of entertaining items for her 12-year-old daughter Hilary, who has autism.

“We always hit her favorite places and let her help plan out the trip and each day’s excursion,” says Greenwald, who is president of the Connecticut-based organization We Belong: Inclusion in Fairfield County. “The only issue we haven’t quite worked out yet is her aversion to flying. She had a bad experience a few years ago.”

Christine Santori’s 8-year-old son Sean has a condition similar to cerebral palsy and walks with canes. He also has severe food allergies. Santori’s No. 1 tip is to plan and give yourself plenty of time.

“We always travel with fives [five dollar bills] so we can tip all of those who help us out,” says Santori of Ridgefield, Conn. “It takes a village!”

Book with Care

When it comes to making travel bookings, Santori has found that talking to a live person is a must. “Make airline reservations with a live person so that you can tell them that you are traveling with a handicapped child, and then discuss with them what services/accommodations they can offer you,” she says. “The same applies to hotel reservations.”

Vicky Sigworth of the New Haven, Conn., area found flying internationally easier than she expected after her 19-year-old son Jon sustained a spinal cord injury last year that left him with limited use of his arms and no use of his legs.

“Our experiences have been so positive that we plan to return to the Spinal Cord Injury Centre in India [where Jon spent his first five weeks post-injury] during January with him,” Sigworth says. “Attitude is everything. When your attitude is gracious and you don’t worry about things, people are willing to help most of the time.”

Making the Transition Into Community Living

One drastic misdiagnosis forever changed Susan Sinden’s life in a heart beat. She was a mother and a wife who went to the doctor with a cough. “The doctor thought it was asthma and gave me Advair, then sent me home. I was supposed to follow-up the following week with an appointment, but I never made it,” says Susan. Four days later, she was in the emergency room feeling very sick. Susan didn’t wake up until 12 days later.

It was found that Susan didn’t have asthma. Instead she had one of the most deadly types of pneumonia a person can get, known as pneumococcal disease. Doctors told her family that the survival rate for Susan’s pneumonia case was zero to none. Gangrene developed in her lower extremities, forcing the doctors to amputate both of her legs below the knee and all of her fingers on both of her hands, except for her thumbs. But, her struggle to survive would not end in the hospital. Susan continued to fight for her independence while living in a rehabilitation center, and later, she fought to become a thriving member of the community once more.

Life in a rehabilitation center was not ideal for Susan, a woman who had an active life prior to her disability/illness. “[In the rehabilitation center] you don’t have a lot of space or privacy. I felt lost at first because everything changed so quickly,” says Susan. She was very close to her supportive husband and regretted not being there for her son when she was in the nursing home. “I missed out on three years of his life,” she says, “Then I said, ‘It’s my time to live in this community, like I did before.'”

Fortunately, for Susan and others, living in a nursing home, intermediate care facility or other type of institution is not the only option. In fact, the cost of living in an institution is higher than the costs of living in the community. With proper education about housing options, funding, advocacy, and personal care, transition from institutional living to community living can become a reality.

Proper education is the key to any successful transition. Your first step is to gather as much information as possible to make an informed decision. According to Julie Alexander, Nursing Home Transition Program Project Coordinator for Independence First, the first step is making the initial phone call and getting in touch with a transition counselor. “When working with people [in an assisted living home], they can contact us or we can get in touch with them. Then we can move on to coordinating services like housing, funding and personal care,” says Alexander.

A transition counselor can teach you many important skills, including advocacy. It’s important to learn to be your own advocate throughout the planning process by knowing your rights, your entitlements and how to file a complaint. Alexander knows how frustrating it can be. “We help people get through the red tape,” she says. “In the last year we’ve negotiated with the housing authority to designate a number of places for people with disabilities.”

The process to transitioning can be a long one. “An ideal case is someone who is moving back into their own home and will need some personal care services. In a good case scenario, this would take about six weeks.” However, Alexander continues, “Finding a one bedroom residence may take one to two months or even up to three or four months if the case is complicated and involves county assistance. I’ve seen cases that can take six or seven months because of the waiting list.”

The most difficult challenge is finding housing. You may choose to live with relatives, find subsidized housing or find low income housing. Unfortunately, there is not a lot of accessible housing for people with disabilities, or the waiting list is so long that you may find yourself waiting for up to four years.

In addition to housing challenges, sometimes even family and doctors can be a barrier towards your independence. Concerned family members may not support the transition. It then becomes necessary to convince them that living on your own is an achievable goal. If the nursing home staff determines that you can live safely on your own, then you have the right to make your own decisions about moving out. “My psychiatrist didn’t think I was emotionally ready because I was too eager and stubborn, and I was jumping into things too quickly, but he was wrong. I said, ‘It’ll be over my dead body before I’ll go back into a hospital or nursing home,'” says Susan.

Some Extra Tips for a Smooth Transition

  • Work with the Right People – Make sure the staff you are working with are fully knowledgeable about the rights and services you deserve. An educated staff member who can provide resources for success is essential. Make sure your transition counselor knows your community well and can provide answers for any topic ranging from affordable housing to finding furniture and budgeting your money.
  • Prepare for a Rainy Day – If possible, before you move out, set aside money (known as a slush fund) for emergencies.

The next essential step is to investigate funding resources that are available. In Wisconsin, for example, “The state has designated funds for individuals who want to live in the community under the Community Relocation Program,” says Alexander. Look for resources such as the Housing Voucher Contract that can help if you want to move back into your home but need funding for a ramp. However, don’t expect this to be a quick process with a fast turn-around. “Money is there, but it takes time,” says Alexander. Be sure to ask questions about other resources that may be available to you at your local independence center.

Have a true understanding of the independent living philosophy: everyone has the right to live in the community. “Consumer choice and community empowerment is what our philosophy is. When I meet with someone, it’s about what they want. We work with people, not for people. And, [we] give them the resources they need: direction, empowerment and control,” says Alexander.

“I am more than happy to be alive,” says Susan. “Without them (Independence First’s transition help) I wouldn’t be out of there. I‘d still be in a nursing home. It’s a challenge, but it’s better than being where I’ve been. I’m working really hard on my prosthetics, and that’s progress for me. It’s not a piece of cake, but you learn to adjust.”

Please visit www.independencefirst.org or www.ENDependence.org for further information on transitional living and for of experts familiar with the transition process.

Related Resources

Spotlight on: Spinal Muscular Atrophy

Al Freedman of Pennsylvania will never forget the day he was told that his 6-month-old son Jack had spinal muscular atrophy (SMA), an incurable and progressive neuromuscular disorder. “It was like being launched into the Twilight Zone,” Freedman says. Life was suddenly filled with doctor visits, scary hospital stays and equipment to help Jack eat, breathe and cough.

Yet, Freedman remembers just as clearly the day his grief over having a severely disabled and medically fragile child lifted. It was a day like any other day. He was driving the van, 4-year-old Jack in the back seat, laughing and singing to the radio.

“He had such a positive attitude about him,” Freedman says. “I remember thinking that I should not limit his happiness by my sadness.”

Jack is now 11 years old. While his life is different than other children’s his age, in many ways, it is also much the same. He goes to school, plays with friends, swims and works on his computer. According to his father, he’s a happy boy who seldom complains about his physical limitations. For Jack, says Freedman, his disability “is what it is.”

What is SMA?

SMA is a genetic disorder that occurs in one out of every 6,000 live births. It is caused by a missing or mutated survival motor neuron gene known as SMN1. This gene triggers the production of a protein crucial for the proper working of motor neurons.

Motor neurons are nerve cells that start in the brainstem and run down into the spinal cord, sending messages to the muscle cells that control voluntary movements such as breathing, swallowing, speaking and walking. Without the necessary protein, motor neurons degenerate and die, causing muscle weakness. SMA does not affect cognitive abilities; in fact, many children with this condition are described as being unusually bright.

One in every 40 people carries the defective gene that causes SMA. The offspring of two carriers has a one in four chance of having SMA.

SMA Classifications

Because the course of SMA varies, it is generally classified into four types based on age of onset and the achievement of motor milestones:

Type I is the most severe type of SMA. It affects children age 6 months or younger, 50 percent of whom die before they reach age 2, generally due to complications from respiratory infections. Children with Type I SMA are unable to sit without support.

Type II SMA strikes those between 7 and 18 months of age. Children with Type II SMA are able to sit without assistance, though they may need to be placed into a sitting position. They may suffer frequent respiratory infections and are at greater risk for complications from these infections.

Type III is a less serious form of SMA, affecting children from 18 months into the teen years. Although their muscles are weak, children with this type of SMA can walk initially. They often need a wheelchair as the disorder progresses.

Type IV affects people older than age 35.

Most often, parental concern about a child’s lack of normal movement or failure to meet motor milestones precipitates testing for SMA. Most SMA cases can be detected by a blood test, which looks for the presence of the SMN1 gene.

Physical Problems

While physical problems vary according to type and severity of SMA, three of the most common problems are:

Failure to Thrive

Because of weakness of the muscles involved in sucking, chewing and swallowing food, children with Type I and some children with Type II SMA have difficulty taking in enough food to grow normally. They also may have problems with choking during eating. It may be necessary to provide nutrition through a feeding tube.

Respiratory Problems

Children with Type I and Type II SMA breathe with the diaphragm muscle because they have weak intercostal (between the rib) muscles. This respiratory muscle weakness results in underdeveloped lungs, problems taking deep enough breaths to maintain normal oxygen and carbon dioxide balance and trouble coughing in order to bring up secretions from the lungs.

A respiratory care plan should be in place as soon as an individual is diagnosed with SMA. This plan specifies the daily respiratory care needed and any intensified care that may be necessary during colds or other respiratory illness. It may include:

  • Measuring the oxygen level in the blood (pulse oximetry)
  • Chest physiotherapy to loosen secretions in the lungs
  • Positioning to allow secretions to drain
  • Suctioning to rid the upper airway of secretions
  • Manual and/or machine cough assistance
  • Non-invasive respiratory support (intermittent positive pressure ventilation)
  • Invasive respiratory support through tracheotomy (surgical opening in the windpipe) and mechanical ventilation

Orthopedic Problems

Children with SMA, particularly if they are unable to walk, usually develop problems such as scoliosis (curvature of the spine) and contractures (permanent shortening of muscles and tendons adjacent to a joint) with decreased range of motion in the joint. Physical and occupational therapists can help family caretakers decrease the severity of these problems with therapeutic exercises, proper positioning and the use of devices to help the child to a standing position (standers).

Life After Diagnosis

Parents of a child newly diagnosed with SMA often find themselves in a whirlwind of medical office visits. They may experience frustration in finding that some health care providers are unfamiliar with SMA. Freedman stresses that it’s important to seek out medical professionals who are knowledgeable about the condition. One good place to start is your local Muscular Dystrophy Association (MDA). You can find the MDA in your community by visiting www.mdausa.org. MDA helps with resources for all neuromuscular disorders including SMA.

MDA-sponsored clinics are held in a number of hospitals, says Lisa Perry, coordinator of Good Shepherd Rehabilitation Hospital’s Muscular Dystrophy Program in Allentown, Penn. Many of these programs offer a multidisciplinary approach to SMA that includes physical and occupational therapy, speech therapy, nursing services, respiratory care and counseling. The MDA often covers costs that are not paid for by insurance companies. “I like to think that we walk hand-in-hand with families every step of the way,” Perry says.

Another source of support is Families of Spinal Muscular Atrophy (http://www.fsma.org), an online resource center offering comprehensive education and support for individuals with SMA and their caregivers. In addition to news and education regarding all aspects of SMA, there is an online chatting feature. To learn more, visit the Web site or call (800) 886-1762.

Being the parent of a child with SMA can be challenging. The child will need extra help to meet physical challenges that can delay development and set them apart from their peers. Despite these challenges, however, having a child with SMA is a gift, according to Freedman. In fact, he says Jack has led him to people, places and opportunities he might not otherwise have experienced.

“He teaches a lot of important things by his presence,” Freedman says. “Jack brings out the best in everyone: me, my wife and others around him.”

Spotlight on: Spina Bifida

In her fourth month of pregnancy, Kristi Saul of Oklahoma City, Okla., found out she was carrying a child with spina bifida, a birth defect that would likely result in some degree of permanent disability. “It was a stressful time,” Saul recalls.

Although her doctor gave her some information about spina bifida and Saul read as much as she could find about the condition on the Internet, there were still many unanswered questions. It was impossible for the doctor to predict prior to the baby’s birth how severe the disability would be. And even now that Saul’s child Marley is 3 years old, doctors are unable to say exactly what she’ll be able to accomplish in the future because there is great variation in development among individuals with spina bifida.

What Is Spina Bifida?

Spina bifida is the most common permanently disabling birth defect. It occurs in approximately one in 1,000 births. According to the Spina Bifida Association of America (SBAA), there are an estimated 70,000 people in the United States living with this condition.

Spina bifida is one of several neural tube defects. The neural tube is a group of cells that eventually develop into the brain and spinal cord. Very early in the embryo’s development, if the neural tube fails to form properly, it results in the incomplete closure of the spinal column. In the most severe form of spina bifida, the spinal cord and nerves protrude through an opening in the individual’s back.

It’s not entirely understood what causes spina bifida, but it is believed that this condition is a result of a combination of genetic and environmental factors. Women who are obese, who have poorly controlled diabetes or who are taking certain anti-seizure medications are more likely to have a child with spina bifida.

It is also thought that a deficiency of folic acid, a B vitamin that helps the body make healthy new cells, may be a factor. In addition, those who are Hispanic are more at risk of having offspring with spina bifida than other ethnic groups. Spina bifida can be detected prenatally through blood testing, ultrasound examination and amniocentesis.

Spina bifida can affect several parts of the body. Some of the most common problems are:

Paralysis of the lower extremities: Loss of motor function varies depending on the point on the spinal cord where the undeveloped area occurs. The defect in the spine may occur in the middle of the back, the lower back or at the base of the spine. If the problem is higher up on the spine, there is greater paralysis and loss of motor function.

Hydrocephalus: Most babies born with spina bifida develop a condition called hydrocephalus, which is a buildup of excess fluid in the brain’s ventricles. This is caused by changes in the cerebrospinal fluid circulation due to the defect in the spinal cord and a condition called the Chiari II malformation, which most individuals with spina bifida have. In Chiari II, the brain is located farther down in the upper spinal column than it should be, resulting in a change in the flow of cerebrospinal fluid.

Bowel and bladder problems: Often the nerves that control bowel and bladder function are damaged, resulting in problems with bowel and bladder control.

Learning difficulties: Although the vast majority of people with spina bifida are of a similar intelligence to individuals without disabilities, problems with the brain associated with the Chiari II malformation and resulting hydrocephalus often cause problems with attention, long-term memory, comprehension, eye-hand coordination, planning and organization.

Secondary problems: Secondary complications related to spina bifida include obesity, skin breakdown, latex allergy (due to multiple exposures to latex during procedures), depression and sexual issues.

Surgical Treatments

The most important aspect of treatment for spina bifida involves surgery that puts the nerves and spinal cord back into the spinal canal and covers it with bone and skin. This is generally done within a day after birth, although in several locations within the United States doctors are experimenting with performing this procedure prenatally. While earlier surgery may keep nerve damage from progressing during pregnancy, doing such a procedure poses a risk to both the fetus and the mother.

If there is hydrocephalus present, a shunt is placed from the ventricles of the brain into the abdomen to allow excess spinal fluid to drain into the body. This will correct the buildup of fluid but will not reverse damage that has already been done. Children who have shunt surgery will need to be monitored for signs of shunt blockage and may need shunt replacement periodically during their lives.

Living with Spina Bifida

Problems with bladder emptying are corrected by using a clean catheter to drain the bladder at intervals each day. Over time, many children with spina bifida will learn how to do this procedure themselves. Bowel problems are addressed with diet, medication and bowel training.

Early intervention for help with motor development is crucial. Most children with spina bifida are eventually able to walk with the help of leg braces and/or crutches, though some may need a wheelchair to get around. Early intervention also can help with fine motor skill development, which is important for learning and for promoting dexterity for future self-care activities such as catheterization. When a child with spina bifida enters school, it’s imperative that parents and other caregivers work closely with the child’s teachers to develop a plan to ensure maximum learning potential.

It’s crucial to help a child who is facing a lifetime of permanent disability to think in terms of what he or she can do rather than what she cannot do. “Everybody’s good at different things,” says Saul, who ends each day with Marley by stating affirmations. “We talk about her unique qualities.”

Saul also emphasizes the importance of helping a child with spina bifida participate in community activities such as swimming at the local YMCA or going to the library. She believes it is good for both the disabled child and others around her to acknowledge that each person has weaknesses – and strengths.

The outlook for a child with spina bifida is much brighter than it was even 15 years ago thanks to surgical intervention and improved medical knowledge about maintaining optimum health. Most children with spina bifida live a normal or nearly normal lifespan, attain independence and work at competitive jobs.

What advice does Saul have for parents who have just learned that their child has spina bifida?

“Stay open to the possibilities,” she says.

For more information about spina bifida, visit the Spina Bifida Association’s Web site.

Spotlight On: Poland’s Syndrome

I was keeping an eagle eye on my preschooler that summer day at the gorge. Sharp rocks, swift water, stinging insects — so many dangers for an overprotective mother to worry about. But cause for concern was about to come from a totally unexpected place.

Amir had come out of the water and was shivering as his dad dried him off with a big towel. Suddenly my husband called to me with concern in his voice.

“Look at Amir’s chest!” he said. “What’s wrong with it?”

I looked at my shivering son. His right side looked flatter and more caved in than his left side. The right nipple was higher up on his chest than the left. It wasn’t red or swollen, however.

“We have to take him to the emergency room,” my husband said. He was already packing up the blankets and picnic gear. I wasn’t sure it was an emergency situation. But could Amir’s chest have been like that for a long time without my having ever noticed it?

Our next-door neighbor was a surgeon and good friend, so I convinced my husband to call him when we got home. He examined Amir and said he had Poland’s syndrome, a congenital defect. He made Amir put his hands in prayer position and showed us that the fingers of his right hand were smaller than those of his left.

“Amir has had this since birth,” the doctor told us. “It’s very rare; your pediatrician quite possibly is not even familiar with it. He doesn’t have a pectoral muscle on the right side; that’s why his chest looks so flat.

“Amir’s case is not too severe. Don’t feel bad about not having noticed it. There’s nothing you could have done to prevent it, and it’s not a disease. It’s not going to get any better or worse.”

What is Poland’s syndrome?

Poland’s syndrome is a rare disorder characterized by deformities of the chest and hand on one side of the body. It is named after Sir Alfred Poland, the British surgeon who first described its occurrence in 1841. Poland’s syndrome is sometimes known as Poland’s anomaly. It is also sometimes written “Poland” rather than “Poland’s.”

Poland’s syndrome is thought to occur in between one in 10,000 and one in 100,000 births. Gathering statistical data is difficult because it is so uncommon and because mild cases may go unreported.

The condition is thought to be the result of a tiny stroke occurring around day 48 of a fetus’s life. At 6½ weeks after conception, an unborn child is developing limbs. The fingers are beginning to separate, and nipples are forming. Momentary disruption of the blood flow to one part of the body causes a variety of defects.

Is it hereditary?

Exactly why this mini-stroke happens is not known. It has been suggested that there might be some hereditary predisposition toward its occurrence. Cases have been reported of a mother and daughter, or father and son, with similar manifestations of the syndrome. These cases are rare, however. There also are case studies of twins, one with Poland’s syndrome and one without. Some experts have also theorized that Poland’s syndrome may be the result of exposure by the mother to toxins before birth, but this is only a theory.

Poland’s syndrome is much more commonly seen in males than in females, and it usually affects the right side of the body. This data suggests that whatever is happening is not completely random, but just why it happens is not yet understood. The rarity of the condition makes it difficult to study. Most doctors have never encountered a case, and many are unaware of its existence. My own pediatrician brushed it off, saying, “No one is symmetrical.”

Can it be corrected?

Some cases of Poland’s syndrome are more severe than others. The pectoralis major muscle on one side of the body is always at least partially missing, and the hand and fingers on the same side are smaller. Sometimes the arm is only partially developed, or the fingers may be webbed. In females, the breast and nipple may be missing. Plastic surgery — to separate fingers or to implant muscle tissue, for example — can correct many of these features.

Because the chest wall is lacking muscles, respiratory problems may be present. Chest muscles enable a person to cough and thus rid the lungs of bacteria and irritants. Some women with Poland’s syndrome may have difficulty nursing a child. Most of the problems with the syndrome are not physical, however. Self-consciousness about one’s appearance, and learning to live with others’ reactions (well-intentioned and not), are the greatest challenges for an individual with Poland’s syndrome.

Living with Poland’s Syndrome

I am fortunate to live very close to a Shriner’s Orthopedic Hospital (these hospitals offer services free of charge and specialize in orthopedic conditions). I took my son to see a geneticist there who confirmed the diagnosis my neighbor had made. She assured us our son would be fine and that he would almost certainly not pass on the condition to his children. She predicted that in late adolescence he would become self-conscious about his condition and invited us to follow up with them at that point.

How right she was! Amir went from cheerfully informing nearly everyone, “I’ve got a missing muscle!” in toddlerhood to refusing to take off his shirt in gym class by high school. He began to avoid any activities that would build up his upper-body muscles and exacerbate the difference between his left and right sides. He began insisting that “something be done” about his condition.

So back we went to the hospital. There he spoke with a physical therapist who himself had a chest abnormality (although not Poland’s syndrome). Amir talked eagerly to him about his feelings. A surgeon then examined Amir and described in detail the implant procedure that could be done. After weighing the pros and cons, Amir decided that purely cosmetic surgery was not worth the trouble.

No one at the hospital minimized Amir’s feelings in any way or told him he should be lucky his condition wasn’t worse. He was taken very seriously, and he was offered choices. He chose to live with his asymmetrical body. Although he is outwardly no different than he ever was, Amir now feels 1,000 percent better about himself. He’s gone back to working out with weights and playing basketball. He’s just a normal teen.

Spotlight on: Epilepsy

Epilepsy affects more than 2.5 million Americans, and yet much of the general public remains uneducated about this neurological disorder. Individuals with epilepsy have spontaneously recurring seizures or episodes in which there is sudden and abnormal electrical activity in the brain. Often this electrical activity results in uncontrollable body movements or the convulsions that most people recognize as a seizure, but sometimes this activity will manifest itself differently, such as through losing consciousness or staring spells.

Many people living with epilepsy will only experience one type of seizure throughout their lives, but others may experience many. It is the recurring nature of these seizures that lead to the diagnosis of epilepsy.

The Epilepsy Spectrum

According to the Epilepsy Foundation, there are three commonly recognised categories of epilepsy. Each type is based on the severity of the disorder and the resulting seizures. Uncomplicated epilepsy is controllable with medication and has little effect on an individual’s life otherwise. Compromised epilepsy can be controlled, but it often requires higher doses/stronger medication and results in more side effects. These factors often can infringe on an individual’s education, career or social life.

Finally, there are individuals whose lives are devastated by epilepsy. These people find that their seizures cannot be controlled and that their epilepsy results in slowed learning and impaired motor functions, among other things. Unfortunately these individuals often require lifelong care and are less likely to ever live independently.

Treating Epilepsy

Jennifer Stefanik, an intensive care unit nurse at Brigham and Women’s Hospital in Boston, Mass., is enthusiastic about the success of treatment options for patients diagnosed with epilepsy. “In about 70 percent of seizure patients, anti-seizure medication, or medication that effectively stops specific types of seizures from occurring, is the preferred mode of treatment,” she says.

Stefanik notes that there are other treatment options including: the use of a ketogenic diet (one that is high in fat but low in carbohydrates), vagus nerve stimulation (a procedure in which an electrode is implanted in the brain and occasional electrical stimulation reduces seizure activity) or surgery to reduce the part of the brain that is causing seizures. Though treatments will reduce the likelihood of seizures, Stefanik does advise that all individuals with epilepsy teach their friends and family what to do in the event of a seizure. This includes clearing the area, turning him/her to one side, not restraining the person or trying to insert anything into his or her mouth and calling for medical attention if the seizure persists for more than five minutes.

Living with Epilepsy

While treatments do abound, there is no cure for epilepsy, so those diagnosed with the disorder, and their families, will live with it for their entire lives. Caring for someone with epilepsy, even when it is being treated, can be stressful, but there are ways to alleviate the stress.

“There is the constant stress of making sure you don’t miss any clues about a possible seizure,” says Virginia Scanlon of Verona, N.J., the mother of a teenaged daughter with epilepsy. “And you must make sure that the school has safeguards in place and a plan of action in case a seizure does occur.”

Scanlon also finds the constant daily regiment of medication and worrying about the onset of a seizure to be a common source of stress for a family that includes an individual who has epilepsy. However, Stefanik advises all her patients to join local support groups or affiliates of the Epilepsy Foundation.

There is no denying that living with epilepsy will bring its own challenges, but the good news is that few of them are insurmountable. “With the right treatment, a person with epilepsy is fully capable of leading a full, healthy life,” Stefanik says. “While they should always be aware of the potential for seizure activity, there is no reason the person cannot attend school and extracurricular activities, go to college, enjoy a career, get married or have a family. The only additions to this are regular checkups with a doctor or neurologist to discuss any changes in the condition or treatment options.”

Spotlight on: Down Syndrome

Russ Beaty of Traverse City, Mich., vividly remembers the day in 1972 that his daughter Jennifer was born. Beaty and his wife were advised to put their infant into an institution where she could be cared for “properly.” But they ignored this advice and took Jennifer home, where — in spite of multiple medical problems and numerous trips back to the hospital — she thrived. “We raised her the same way that we raised her brothers,” Beaty says.

Today Jennifer lives near her parents in a community living center. Staff assist her in perfecting her living skills such as doing her laundry, planning and cooking meals and using public transportation to get to her part-time job in a sheltered work setting. Jennifer hopes eventually to move to a more independent living situation.

Jennifer’s outcome has been undoubtedly better than had she been institutionalized. And the outlook for a high quality life for a child born today with Down syndrome is even more positive, says Leigh Zoellick, project coordinator for the Institute on Disability/UCED at the University of New Hampshire, and parent of a son with Down syndrome.

“It is generally expected that children [with Down syndrome] will be educated, with support, in regular classrooms [and] that they will hold down jobs as adults,” Zoellick says. “Some adults with Down syndrome marry, drive cars [and] live independently.”

How can you help your child with Down syndrome achieve his or her full potential? Most experts believe it’s important to learn everything you can about the disability so you can advocate for appropriate and quality support as your child grows and develops.

What is Down Syndrome?

People born with Down syndrome have a chromosomal abnormality. Although there are three types of chromosomal abnormalities identified as causes of Down syndrome, the most common is “trisomy 21,” which is an extra chromosome on the 21st pair of chromosomes. This means that there are 47 chromosomes in each cell rather than the usual 46. There are approximately 4,000 children with Down syndrome born in the United States each year, or about one in 800 to 1,000 live births.

Individuals with Down syndrome have a variety of distinguishable physical characteristics (but not necessarily all of them), including:

  • Hypotonia, or reduced muscle tone
  • Slanting eyelids with small skin folds (called epicanthal folds) at the inner corners
  • Small head with flattening of the back of the head
  • Flat bridge of the nose
  • Smaller, low-set ears
  • Small mouth
  • Small hands and feet
  • A line or crease across the palm of one or both hands
  • A gap between the first and second toes


Individuals with Down syndrome are usually of short stature, and their physical development is slower than might be expected. They have varying degrees of intellectual disability, too, from mild to severe.

Medical Issues

Children with Down syndrome need the same medical care that all children do, such as well baby visits and immunizations. But most individuals with Down syndrome have special medical needs, too. Common medical problems among individuals with Down syndrome include:

Hearing Problems

More than half of children with Down syndrome have some type of hearing problem. Early testing will identify and treat problems that can interfere with speech development.

Eye Problems

Eye disorders are common among individuals with Down syndrome, including strabismus (imbalance of eye muscles causing eyes not to focus in tandem), refractive errors (nearsightedness or farsightedness), cataracts and glaucoma. Regular eye exams beginning in infancy will help treat any identified problems.

Heart Problems

Slightly less than half of children with Down syndrome are born with heart defects. Not all of these defects result in readily apparent symptoms, so it’s important that all children born with Down syndrome have an echocardiogram by the third month of life.

Endocrine Problems

About 10 percent of children with Down syndrome have hypothyroidism, which is a malfunction of the thyroid gland. This results in less production of thyroxin, a hormone that helps the brain and other body tissue grow. Testing for hypothyroidism should be done at birth and at least every two years thereafter.

Intestinal Problems

Intestinal problems such as blockage of the esophagus (food pipe), small bowel or anus are more common among individuals with Down syndrome. There is also a higher likelihood of Hirschsprung’s disease, a disorder in which the nerves that control the function of the colon (large bowel) are absent. This results in severe constipation.

Nutritional Problems

Those children with severe heart disease may have difficulty getting enough nutrition to gain weight. Later in life, during adolescence and young adulthood, obesity can be a problem for many individuals with Down syndrome. Nutritional guidance can help offset these problems.

Skeletal Problems

Children with Down syndrome have an increased risk of kneecap or hip dislocation and also a condition called atlantoaxial instability, which is a condition that results from a misalignment of the first two neck bones due to loose ligaments. Screening should be done to detect these problems.

You can find more information about recommended health screenings for children with Down syndrome on the American Academy of Pediatrics’ website.

Finding Support

It may take time to adjust to the idea that your child was born with a disability. Family support groups can help you find current information about your child’s condition, offer support and help with resources, says David Finn, director of special education for Samford University in Birmingham, Ala.

Zoellick agrees. When her son Peter was small, she enjoyed meeting with other parents of children with Down syndrome. “I lived for that connection,” she says. Now that her son is older, Zoellick feels less need for an ongoing support group, but she still reaches out to other parents for help with particular parenting issues.

For help locating a parent support group in your area, contact the National Down Syndrome Society (NDSS) at (800) 221-4602.


Early intervention is a program that helps children with an identified disability in all areas of development, including gross and fine motor skills, language development, social development and self-help skills. A specialized team of professionals assesses your child’s needs and designs a program specifically for him or her.

“Early intervention is critically important for those children with Down syndrome, as it is with other children having delays in development,” says Riva McLernon, a speech-language pathologist who works with young children in the Burlington Township school system in New Jersey.

Early intervention should begin shortly after birth and continue until your child is ready for a preschool program (generally at 3 years old). To find an early intervention program near you, contact your local elementary school or hospital or contact NDSS.

As your child grows older, he should be able to attend a traditional preschool and, later, elementary and secondary school, though he may need support to be able to do so. According to Finn, given the chance, most children with Down syndrome can learn more than we may think. “The exciting thing about Down syndrome is that we are learning more and more every day about what is possible,” Finn says.

Growing into Adulthood

Children with Down syndrome need to learn the skills necessary for a high quality employment outcome, whether it is in a sheltered work setting, supported work setting (where a job coach helps with job skills at a community job until they are mastered) or competitive work within the community.

There are also decisions to be made about housing, whether it is a group living situation, a semi-independent setting or an independent setting. While some individuals with Down syndrome continue living with their parents beyond adulthood, many parents believe it’s important for their child to have his or her own living arrangement.

Janet Smith of Birmingham, Ala., parent of 32-year-old Kerry, who has Down syndrome, is struggling with this issue. Although Kerry is happy living with Janet and enjoys his participation in a group recreational program during the day while Janet is working, Janet wonders if this is the best situation. “As he gets older and I get older, I’m wondering about where the best placement is,” Smith says.

Although Smith and her son have not yet found the answer to their own housing dilemma, she is happy that there are more — and better — choices for people with Down syndrome today, in all aspects of life. “It’s a whole new world out there,” she says.

Spotlight on: Cerebral Palsy

My sister, Becky, and I are a lot like most siblings: We’re alike in many ways but also have major differences. We share a love of fine dining, shopping, music, movies and going to the theater. We both have a very dry sense of humor and still like to tease each other even though we’re both in our 30s.

We have our differences, too, just like other siblings. Becky’s fashion-forward wardrobe is color coordinated in her closet; I’m more of a jeans and T-shirt kind of gal. She calls herself organized; I say she’s a neat freak. She says I’m messy; I consider myself domestically challenged. Our list of similarities and differences goes on, but that’s where our similarities to most sisters ends.

When I visit Becky and we get ready to go out for dinner, I dress her. At the restaurant, I feed her. If she needs to use the bathroom, I assist her. Becky was born with cerebral palsy.

What is Cerebral Palsy?

Cerebral palsy, widely known as CP, is a condition that affects muscle coordination and body movement. CP is caused by brain damage that may occur before, during or after birth as well as during infancy. Becky’s CP was proved in a court of law to be a result of medical malpractice when she was born 32 years ago. However, it is now believed that less than 10 percent of CP cases are caused by problems during delivery.

According to the March of Dimes, causes of cerebral palsy include certain infections in the mother, premature birth, insufficient oxygen to the fetus, blood diseases, severe jaundice or other birth defects including genetic diseases. Research continues to be done on cerebral palsy and its causes. It is not a progressive condition, meaning it does not get worse over time.

United Cerebral Palsy, the leading organization and source for information about CP, estimates the following:

  • Approximately 764,000 children and adults in the United States have one or more symptoms of CP.
  • About 8,000 babies and infants are diagnosed with CP each year, and about 1,200 to 1,500 preschool age children are also diagnosed.
  • About 70 percent of children have congenital cerebral palsy, which results from brain injury in utero, and an additional 20 percent are diagnosed with congenital CP because of a brain injury during birth.
  • About 10 percent of individuals with CP acquire it after birth due to brain damage such as infection or head injury.


There are three distinct types of CP, according to United Cerebral Palsy:

  • Spastic cerebral palsy means the muscles are stiffly and permanently contracted. About 70 to 80 percent of individuals with CP have this type.
  • Athetoid (also known as dyskinetic) cerebral palsy is characterized by uncontrolled, slow and writhing movements. Approximately 10 to 20 percent of individuals with CP have this type.
  • Ataxic cerebral palsy is rare and affects an individual’s sense of balance and depth perception. Five to 10 percent of individuals with CP have this type.


Some people may have a mixed form of symptoms, the most common being a combination of spastic and athetoid movements. Other symptoms may include speech, swallowing and mobility difficulties. Sometimes a person with CP may have mental retardation, seizures or hearing and vision problems. Doctors typically diagnose CP by testing an infant’s motor skills and reflexes and looking for symptoms of abnormal muscle tone, slow development and posture.

An individual with CP may face minor or major challenges depending on which parts of the brain are damaged and the type and severity he or she has. Becky has a severe combination of athetoid and spastic CP. She is unable to dress, feed or bathe herself. She can grasp a pencil but needs help writing out the letters of her name, as she can’t control her hand movements. Becky can speak, but slowly. My family and our close friends can usually understand her speech, but someone just being introduced to her for the first time may not.

Becky can’t walk on her own and will never get married or have children. Other individuals with CP have much milder symptoms and are able to live with complete independence.

Are There Treatments?

There are no specific treatments available to cure cerebral palsy itself. However, depending on the specific needs of someone with the condition, speech, occupational or physical therapy – or a combination of all three – can be very helpful. Others may have surgery, take medication, wear leg braces or use a cane or wheelchair. Adaptive technologies such as specialized computers that can help someone with severe speech difficulties are also available. It’s important to discuss these options with your child’s doctor so you can choose what’s best for your child and her particular issues. As your child grows, you can find out about specific resources for independent living, counseling and vocational programs and training in your community.

It’s important for parents to understand that CP is not progressive and that there are many options available for therapy and medication. My mother suggests that parents of children with CP “hang in there and do as much as you can while they’re young. Early intervention is important, and the sooner you start physical, occupational or speech therapy, the better.”

Life Into Adulthood

How will the condition affect the individual’s life going forward into adulthood? Depending on the severity of CP, adults with the condition may be able to hold jobs, get married and have families or live independently. Becky has lived in her own home for nine years and works with a team of aides who provide care.

Financial considerations and plans for the future need to be taken care of by the primary caregiver of the individual with CP. I know the day will come when I will be responsible for organizing my sister’s care, medical issues and finances when my parents are no longer around. Sometimes the thought of it is stressful, but I am grateful to have had these discussions now so I know what to do.

I certainly wish that my sister wasn’t born with cerebral palsy. But the older I get, the more I cherish the gift Becky has given my family and me. Becky has taught me sensitivity and strength. My sister has also made a huge impact on my sons. They have known since they were babies that “Auntie Becky” can’t walk or talk like we can and needs some special help. I am beyond proud that my boys have a strong appreciation for people with disabilities that defies their young ages.

Perhaps, most importantly, Becky has taught us patience and respect and to focus on what a person can do instead of what she cannot. I will be forever proud that we are sisters.

For more information about Cerebral Palsy, visit the following websites:

Special Needs Planning Series – Part 2: Taking the Next Step

You have successfully completed the first, and probably most difficult, step in the eight-step PT planning process. Congratulations! In the First Step, you took a hard and honest look at your loved one’s future requirements to get a “big picture” of the work needed to develop the perfect plan for your unique situation. In the Next Step, you will begin to build upon the solid framework you have created.

Construction on this framework will begin by creating your vision of each of the different life stages in your loved one’s future. You will identify each life need, including a quality living environment, educational supports, medical needs, a wellness program and recreational activities appropriate to their ability to support themselves in the future.  This part of the process will be somewhat time-consuming, but is integral to the overall success of your plan.

Having your vision drawn out, it is now time to crunch the numbers. You will need to specifically map out the cash flow that will be needed to support each one of the separate needs you have identified. Don’t panic if you aren’t a whiz with numbers, as help is available in two different ways. You can work with a PT Advocate directly, or utilize our Online Future Care Planning System. This easy-to-navigate system will provide you with the tools you need to successfully plan a safe and fulfilling future for your loved one. The system allows you to enter information into a database and then guides you through the eight-step planning process. This information may be conveniently accessed by other family members and caregivers as appropriate, as well.

Your vision has been mapped out in detail and you have constructed a solid and secure cash flow process to accompany it, so you are finished with this step, right?  Not exactly. This part of the overall planning process is a fluid one.  As your family member ages, the needs you originally identified will change. The map you have created must change accordingly. As your loved one proceeds through the various stages of their life, a clearer understanding of their future needs will become more apparent.  Therefore, it is important to stay committed to refining the map you have drawn each year, as life needs change. The online system is a great tool to help you with these important modifications, as it allows you to easily modify your data as it becomes necessary.

Once you have completed this step, you will already be a quarter of the way through the process of creating your Future Care Plan™. Continuing to work closely with your PT Advocate will ensure that the rest of the process goes smoothly, as they are always available to guide you and answer any questions that may arise.

In addition to working directly with your PT Advocate and using the Online Future Care Planning System, additional help is also available through our valuable 90-minute PT workshops that are held each month. These workshops are an indispensable compliment to the services offered by our Advocates. Making plans to attend a workshop is as easy as contacting Protected Tomorrows at 847-522-8086 or info@protectedtomorrows.com.

Be sure to also check our calendar of events for upcoming workshops, webinars and new online presentations.

Special Needs Planning – Part 3: The Next Step … Exploring Legal Options

In steps one and two of the eight-step PT planning process, you developed a “big picture” of the work needed to be done to create a unique life plan for your loved one with special needs, and then constructed the framework upon which your plan would be built.  You are now nearly half-way through the planning process!

In step three, you will undertake another critically important piece to your overall plan.  Legal considerations are, perhaps, one of the most complex and confusing parts of the eight-step process.  Properly prepared and executed legal documents can greatly assist in the care of your loved one.  Unfortunately, legal documents that are improperly prepared, or not executed in a timely fashion, can become long, difficult roadblocks to that crucial care.

Legal decisions require critical, careful consideration by you and your family, as these decisions will significantly affect the quality of care your loved one will receive.   Parents often find it very difficult to name a family member or friend as a guardian to care for their loved one, or to appoint a trustee to manage all of the financial considerations, after they die.  The daunting nature of these decisions leave families bewildered and render them unable to move forward.

Deciding what amount of money is correct or appropriate to leave for their child with special needs is a decision many parents are unable to make without guidance.  Parents often times do not know how to divide their estate between their child with special needs and their other children to ensure that everyone receives their fair share.  Making uninformed decisions can have disastrous, long-term effects for everyone involved.   A carefully crafted special needs trust incorporated into a comprehensive estate plan will ensure that all of your children’s needs will be addressed both now and into the future.

The issue of guardianship is complicated, with far-reaching effects, and is not a decision to be taken lightly.  Knowing and understanding the different types of guardianship, limitations, requirements, determining factors and protections under the law is necessary when determining whether or not to seek guardianship for your loved one with special needs.

Thinking through these issues and making some preliminary decisions prior to an initial consultation with an attorney can make the process a lot easier to manage.  Choosing the right attorney is critical. Drafting and executing legal documents such as a special needs trust as a part of an estate plan and the guardianship filings need to be handled by an attorney who is highly knowledgeable in these areas.  Many families make the mistake of going to an attorney who may be a family member or friend that they feel comfortable with, or have used previously for other matters, but have no experience or training in preparing these types of documents.  Others take the time to see the right attorney for an initial consultation, but then never follow through because the process is simply too overwhelming and confusing.

For many families, navigating the legal process can be the most stressful step in completing the eight-step plan.   By taking the time to carefully think through decisions and then discuss all of the potential options with a qualified attorney, a great deal of anxiety can be avoided.  Working closely with a qualified attorney and your Protected Tomorrows Advocate, and utilizing Protected Tomorrow’s easy-to-use online Future Care Planning System, will enable you to bring this portion of your future care plan to completion quickly and with peace of mind, as you will be able to rest assured that every aspect of this step has been done properly.

Special Needs Planning Series: Part 4 – Step Four – Taking Advantage of Government Benefits and Services

You have reached the half-way point in the eight-step PT process! Taking a look back, you have completed an honest assessment of your loved one’s future care needs, you identified all of the life needs necessary for your loved one to support himself or herself in both the short-term and the long-term, and you have carefully considered all of the critically important legal options to ensure financial security.  Now it is time to move on to the next important block in the construction of your plan — Step Four – Government Benefits and Services.

One of the most critical components of the required financial support for an individual with special needs is government benefits. These benefits become particularly important as your loved one matures into adulthood. Parents and primary caregivers are often reluctant to seek out government benefits for many different reasons. This is a hurdle that must be overcome, however, as government benefits are essential for everything from housing to healthcare to job coaching. Your plan is not complete without the inclusion of this significant piece.

As caregivers, we have worked very hard to advocate for our loved ones throughout their childhood, adolescence and adulthood. Up to this point “advocating” has meant promoting your loved one in the most positive light that the situation requires.  Conversely, when considering potential government benefits, we need to be candid and realistic about the true abilities of our loved ones. This is in extreme contrast to what we have been doing so naturally since our loved ones came into our care.  However, the only way to prove your loved one has a disability, and therefore is entitled to government benefits, is to focus and promote their disabilities.

So how do we get over this hurdle?  It is best to sit down to evaluate the abilities of your loved one with an Abilities Assessment.  In an abilities assessment, a caregiver should evaluate some of the standard Activities of Daily Living (ADL) and analyze the level of assistance your loved one would need to complete the task. For example: Cooking — can your loved one plan a meal? Shop for groceries on their own? Use a stove, oven or knife? Follow a recipe? The answers to these questions certainly change the vision of your loved one when a government agency is evaluating the level of assistance that will be given.

Once an abilities assessment has been completed, the next step is to match your needs with available government funding, such as Supplemental Security Income and Medicaid. Government benefits may cover basic support needs as well as big ticket expenses such as housing and healthcare costs. Remaining costs such as clothing, entertainment and recreation must then be covered by personal funds.  Additionally, any supplemental expenses over and above what government programs will pay for must be covered by parents or primary caregivers.

The next focus should be identifying those social services, community and government programs that will augment and reinforce your future care plan. Thinking in broad strokes is useful at this juncture. Think about school, recreation, specialized doctors and research protocols and how these areas could benefit from government assistance.

When you consider how significant government benefits can be in relation to your loved one’s financial security, the decision to do the leg work in this step of the process becomes easy. This step can be somewhat intimidating for parents who already have too many responsibilities to deal with each day, which is where our PT Advocates can help.  They and their team of experts are always here to help you identify both your needs and corresponding government benefits and programs. In addition to advisors, the Online Future Care Planning System is available as well to help you through all eight of the steps in the process. Take advantage of both to move quickly and effortlessly through this step.

Special Needs Planning – Part 5: Step 5 – Document the Wonder

Stages 1 through 4 of the 8 Stage Future Care Plan process are now behind you … which means it is time to catch your breath and jump into Stage 5 – Documenting the Wonder. While previous stages have involved a lot of number crunching and wading through legal issues, this stage gives you the opportunity to write your loved one’s unique story to share with others, both now and in the future. While this stage will require the same time and effort as the previous four stages, you will find this stage to be a very rewarding one to complete.

In Stage 5, you will have the opportunity to construct a narrative detailing every aspect of your loved one’s life, including their unique talents and abilities. This chronicle will serve as a roadmap for everyone involved in your family member’s future care, giving them the necessary tools to encourage and foster all of your loved one’s abilities and, more importantly, continually build their self-esteem. Attention to detail in your documentation is key in this stage to ensure that wishes are fully realized throughout the individual’s lifetime.

As you begin to think about all of the aspects of your family member’s life, you may start to feel overwhelmed. Where do you start? What if you forget important considerations? The “Document the Wonder” section of Protected Tomorrow’s online planning system will help you organize this task and ensure that no important piece of information is overlooked. The Table of Contents provides you with a checklist of all of the areas that should be considered as you write your family member’s story. The online system allows you to work with one topic at a time, keeping you on task and focused. As you move through each specific section, your story will begin to unfold as an organized, easy-to-follow narrative.

This comprehensive checklist allows you to document every imaginable topic from family traditions to insurance information. Here, you can specifically spell out each and every nuance of your family member’s day-to-day life, as well as address complex topics such as guardianship and government benefits so that there will be no questions or ambiguity for caregivers to deal with in the future.

Perhaps the most important aspect of preparing this story is that it is a fluid document that is accessible to anyone to whom you wish to give access. As things change in the life of your family member, so can the story. Updating the information is easy and everyone will always have the most up-to-date information at their fingertips.

As you continue to work through the 8 Stages of the Future Care Plan, always remember that the Protected Tomorrows team is no farther than a phone call or email away and are eager to answer your questions and help you through each stage of the process.

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Special Needs Planning Series – Part 6: Begin the Transition™

You have now TAKEN a candid look at the overall big picture, CREATED a future map, FILTERED the legal options, CAPTURED potential benefits and DOCUMENTED the wonder. What’s next? Step 6 is all about putting the pieces together to BEGIN the transition for your loved one with special needs.

In Step 6 of the Protected Tomorrows special needs planning series, you will identify and evaluate four key components in your family member’s life — residential, learning, employment, and recreational options. The good news is that Step 6 lends itself to self-advocacy. All a family member or caregiver needs is time and the ability to do some research. While the assistance of Protected Tomorrows’ dedicated team of Advocates is always at your disposal should you need help, the Protected Tomorrows Special Needs Directory located on our website can provide you with many of the resources necessary to develop a comprehensive Live/Learn/Work/Play plan that will meet the needs of your loved one and fit into the framework of your own life. Other potential resources to explore include the Internet, Facebook, LinkedIn, service professionals, social workers, transition coordinators, rehab professionals, etc., and, of course, networking with other families. Once you have gathered all of your information, the Online Future Care Planning System is an excellent location for documenting those resources and services.

One of the most important decisions to be made is where your loved one will live. Will your loved one live with you? Live in a Group Home with 24-hour custodial care? Live independently? Live in or utilize services provided by a Community Integrated Living Facility (CILA – IL state funded residential and in-home services) or live in a residential care facility with custodial care? If your vision includes your loved one living with you, a major consideration will need to be accessibility, both now and in the future. In order to maintain accessibility, you may need to consider either retrofitting your current home, purchasing an existing home that offers better accessibility, or undertaking a complete design and build of an entirely new home.

No matter which decision you ultimately make, the LifeCare Design Studio can closely examine your loved one’s specific needs and provide consultancy, planning, design and building services, all with safety and security as their top priority.  Designing and building the perfect barrier free, universal access setting that encourages independent living is a challenge LifeCare Design Studio understands and consistently meets.

The second component in Step 6 is Learning. Protected Tomorrows maintains an exhaustive listing of resources to assist in this area, including everything from tutors to school advocates to adult learning services. Educational needs change greatly as loved ones with disabilities grow older. Services needed by children are quite different from those needed by adults.  The Directory is an excellent resource to assist you ensuring that your loved one, whether a young child or an older adult, has access to all of the educational services available in your area.

The third component is Employment. Many individuals with disabilities hold productive and responsible jobs in the workplace. Again, the Directory is an excellent resource where you will find resources for developmental training and education, sheltered workshops, job placement services and supported employment for your loved one. Developing and nurturing confidence and self-esteem through meaningful employment links hand-in-hand with independent living.

Finally, a good life balance includes both work and play. Recreational opportunities for your loved one with special needs are abundant and widely available. A myriad of camps, programs and entertainment options can be found on the Directory.

You will find Step 6 to be a very fulfilling step to complete. Having the residential, education, employment and recreation pieces of your puzzle in place will bring you and your loved one a great deal of peace of mind. Our knowledgeable and easily accessible Protected Tomorrows Advocates are available to assist you with your search for live, learn, work and play solutions for your loved one.

Click Here for more information on the Protected Tomorrows Online Future Care Planning System and the benefits of becoming a Protected Tomorrows Family Member.

LifeCare Design Studio, LLC is an affiliate of Protected Tomorrows, Inc.  Visit www.lifecaredesignstudio.com for more information.

Special Needs Planning Series – Part 7: How to Fund Your Special Needs Plan

This has been quite a journey you have embarked on. When you began the journey planning for the future of your loved one with special needs, you may not have seen the light at the end of the tunnel! Now that you can plainly see that light, I am willing to bet that you are sleeping better knowing all that you have accomplished to provide a safe and fulfilling future for your loved one. You have (1) Taken a Candid Look™, (2) Created the Future Map™, (3) Filtered the Legal Options™, (4) Captured Potential Benefits™, (5) Documented the Wonder™, and (6) Began the Transition™. We are not done yet. The next step will consider how we will fund the Special Needs Trust you created in Step 3.

In Step 2 you created a vision of your loved one’s future — where will they live, learn, work and play — and then prepared several cash flows to determine the funds needed to fulfill your vision now and in the future. You also identified various sources of income during several stages of your loved ones’ life. The result of step 2 is a calculation of the amount you will need to set aside in order to ensure a safe and fulfilling future for your loved one with special needs. Click here for a refresher on Step 2.

In Step 3 you worked with an attorney to complete a special needs trust for your loved one. In Step 7 we will consider how to fund the special needs trust(s) created in Step 3. This is an excellent time for you to contact your financial advisor. Although you can complete this step on your own, it is often helpful to have an experienced financial advisor by your side to help guide the process and make recommendations on funding solutions.

First, you should consider which funding options are available to you — where will the funding come from. Some options are: savings or investments; death benefits; inheritance; and other income. Next you will determine which of these funding sources should be allocated to the Trust. It is important to note that in order to complete this asset allocation you will need to change ownership and/or beneficiary designations on each account affected to “The Special Needs Trust of Person with Disability” rather than to directly to the person with a disability. Again, this is something that a financial advisor can assist with.

The result of this exercise will probably show that there is a gap — an amount of need that cannot be covered by existing or allocated future assets. A financial advisor can recommend some solutions for filling this gap. Often, families will use life insurance as a solution. We recommend you work with a financial advisor or insurance professional who has experience working with families with special needs. For assistance finding experienced financial professionals, check out the Directory — our special needs resource database — or contact Protected Tomorrows at info@protectedtomorrows.com for more information.

Additional resources can be obtained by joining Protected Tomorrows’ community of Family MembersClick here for more information about our Family Membership.

Want to Change Your Life and the Lives of Others? Train to Be a Protected Tomorrows Advocate

Protected Tomorrows is pleased to announce that our next Advocate training class will take place soon at our corporate headquarters located in Lincolnshire, Ill. The class is designed for professionals who are willing to provide a proven, holistic approach for life planning to families with special needs within their community.

The need for properly trained advocates has never been greater. Increasing numbers of people with disabilities, improved medical care and an aging population mean that now, more than ever, proper planning for people with disabilities is critical. Are you ready to help serve this underserved population and make a difference in their lives?

The Protected Tomorrows three-day immersive training class will prepare professionals to utilize our unique and proven eight step process that addresses the fears and the goals of families with special needs.

In addition, we will help professionals understand how to run and market their own special needs practice within their existing business framework. We will also provide you with all the materials needed to get your practice up and running. There’s no need to recreate the wheel, we’ve done everything for you.

Sound good? Well the training and partnership benefits don’t stop here. Later in the first year, Advocates will have additional training on specific topics that arise out of the Process for Protected Tomorrows. We also offer continuous updates on changing laws and regulations pertaining to the special needs community. In the second year, we train our Advocates on the presentation of group workshops, advanced marketing techniques and skill refinement.

It’s also important to note that you are not alone and don’t have to do it all on your own. Along with becoming a trained Advocate, you also get the support of the Protected Tomorrows organization. We support you with ongoing consultation, document review, advice and preparation assistance for speeches, as well as answers to your operational questions. The additional benefits of becoming an Advocate include referrals to qualified families, exposure via national branding of a well-regarded, well respected organization and access to the Protected Tomorrows government benefits application and processing department.

Protected Tomorrows is the leader in enhancing the lives of people with special needs. Our passionate team of professionals has a personal connection with the special needs community and understands the concerns of families firsthand. Your expert facilitators, Mary Anne Ehlert, Founder, and Brian Finn have over 40 years of combined experience with the special needs community and special needs planning. As special needs parents and special needs professionals they bring passion and a unique perspective to their work with the special needs community.

Become a Protected Tomorrows Advocate and you too can achieve the tremendous personal gratification that comes from serving individuals with special needs and their families.

We are looking for professionals who have the spirit of an entrepreneur and the heart of an angel.

Are you ready to change your life and the lives of others? For more information please call 847-522-8086.

Recommended Tools for Your Journey: The Online Future Care Planning System

Protected Tomorrows Online Future Care Planning System was launched in October, 2009. Subscribers have found that the online system has become a valuable tool that has helped simplify and organize their plans for the future of their loved one with special needs. I am pleased and excited to share that the recent implementation of new technology has allowed us to make the system available to families across the country.

The Online Future Care Planning System is a dynamic, interactive tool to help you on each step of your journey toward developing a future care plan specific to your individual needs. Our easy-to-navigate system allows you to identify and create a flexible, step-by-step plan that focuses on your unique future goals, hopes and dreams. The steps will help you:

  • bring together your vision of the future for your loved one with special needs;
  • prepare for meetings with your special needs attorney and other professionals;
  • prepare for the government benefit application process; and
  • search for valuable services and resources to help you locate the best places for your family member to live, learn, work and play.

A great feature that is included as a part of the online future care system is the “My Special Life” tool. Here, you can chronicle information that is critical to the future caregiving needs of your loved one. The beauty of this online system is that you can completely customize it to your own needs. Categories can be individually selected and each section can be printed separately. Everything you need can be stored in one convenient location.  Photos can even be added to help complete your story.

Our online system was purposefully designed to be completely interactive. You choose who you want to have access to the “My Special Life” tool. This gives everyone who plays a crucial role in your plan the ability to assist in planning, tracking and modifying information as your loved one progresses through the different life stages. Think of the “My Special Life” system as the instruction manual for providing comprehensive care both now and into the future. With access to the system, your family and caregivers will never have a question about the care your loved one is to receive.

Take the first step toward creating a valuable future care plan that will be uniquely yours to update and manage as your family member’s needs change throughout their life. Go to the Protected Tomorrows Family Store to purchase your subscription and get started on your journey.

Home Safety Tips for Seniors

The places we live may not change much over time, but we do. As we age, our eyesight often dims. Our balance can falter. And at some point, the comfortable dwelling space we once took for granted can become dangerous to our older selves.

A November 2006 study by the Centers for Disease Control and Prevention cited falls as the leading cause of injury deaths among Americans age 65 and older. As adults age, the odds increase that they may fall prey to uneven or poorly lighted steps, slick floors or slippery bathtubs.

Other potentially lethal “in-house” hazards facing the elderly include old and unpredictable wiring, the risk of carbon monoxide poisoning from faulty space heaters, cooking fires borne of forgetfulness and the possibility of misreading the instructions on prescription medications.

At the same time, the majority of Americans age 65 and older (85 percent, according to a 2006 AARP survey) would prefer to remain at home instead of moving into a retirement community. The reasons may be sentimental but are more likely financial: Why leave a house that has already been paid for or an apartment that costs much less than assisted living?

Moreover, ours is a highly mobile society that may place the nearest children or close relatives hundreds of miles away. It is to the benefit of seniors living alone and those close to them to conduct periodic inventories of their houses or apartments to uncover hidden hazards.

“These might be things you wouldn’t expect, like the refrigerator,” says Cindy Tait, president of the Center for Healthcare Education in Riverside, Calif. “A lot of older people have older appliances, and the refrigerator may not be cooling sufficiently anymore.” A longtime paramedic who helped create a Riverside program called “Happy at Home,” Tait believes many cases of what is diagnosed as flu among the elderly might actually be food poisoning.

Making Changes

Experts say the first step in keeping an older person safe and happy at home is to do an inventory of the individual. What specific skills or senses may have been depleted by age? Is vision a problem? What about general weakness or specific joint stiffness? Does the individual have a tendency toward memory lapses? Depending on what difficulties the individual may have, his or her living space may need to be adjusted to accommodate it.

Here are some examples of areas in a senior’s home that should be evaluated for safety:


According to the American Foundation for the Blind, older people on average require four times more light than younger people. They also experience increased sensitivity to glare.

In addition, aging eyes often have difficulty defining contrasts and edges such as the subtle divide between one stair step and the next. In all cases, stairwells should be well lighted, and track lighting outlining each step can be another safeguard (as long as it isn’t so bright as to cause confusion).

In their brochure “Lighting the Way: A Key to Independence,” researchers at Rensselaer Polytechnic Institute (RPI) in Troy, N.Y., pay special attention not only to bedroom and bathroom lighting, but also the path in between. Many serious falls occur when an elderly person awakes in the middle of the night to use the bathroom. Half asleep and disoriented, they are often fooled by distances or shapes in the semi-darkness.

The RPI brochure suggests: “Mark the path between the bed and bathroom with one or more plug-in nightlights. These are commonly available with a photocell that turns the light on automatically at night. Install light switches with toggles that glow in the dark.”


In a perfect world, every house occupied by elderly persons would be on one level. But even when that is impractical, stairs can still be made less burdensome and perilous. Here are some stair safety suggestions from the Public Health Agency of Canada:

  • Make sure to place a light at the top and bottom of the staircase.
  • Consider installing rubber or other non-stick treads on top of each riser.
  • Make sure all the stairs are even. One uneven step may be enough to trigger a fall, especially on a descent.
  • If the steps are carpeted, make sure the carpet isn’t loose or bunched at any point.
  • Install handrails on both sides of the stairs at a suggested height of 36 by 39 inches.
  • Avoid clutter on staircases.



Next to falls, home fires are the leading cause of accidental death among individuals older than age 65. Once a fire starts, the combination of its rapid spread and the lack of mobility of many elderly home dwellers can be a lethal combination – another compelling reason to keep sleeping quarters on the main level for people with physical limitations.

There are several safety precautions that can be taken to prevent fires from occurring. Safety experts advise checking and updating old wiring, making sure there is an operable smoke alarm on every floor of a residence and keeping anything flammable at least three feet away from space heaters.

Two recently developed products aim to help seniors prevent fire in their homes. An Akron, Ohio, company has developed Home Sense, a device that sounds a warning six minutes after an electric stove is left on and unattended and every two minutes thereafter. Eventually, the device will shut the stove off automatically.

Meanwhile, a Madison Heights, Va., company called Pyrocool – best known for the fire-fighting foam used to extinguish the smoldering embers of the World Trade Center after the Sept. 11 attacks – produces a fire extinguisher that weighs 13 ounces and is as easy to use as an aerosol can. According to the company, the extinguisher is ideal for kitchen fires. A trip to a local hardware or large retail department store should yield a variety of home fire extinguishing options.


Unfortunately, the older we get, the more medications we often have to take. This is one area in which family members or other caregivers who are close by to the senior individual should become somewhat proactive – not only in finding ways to remind the person in their care which medications to take and when, but also becoming aware of potentially dangerous drug mixtures. Some of the perils facing seniors when it comes to taking medication include forgetting to take it, ingesting inappropriate doses or mixing the wrong drugs in combination.

A Providence, R.I.-based company called Medport has developed a pill organizer that reminds its user when to take a particular drug by use of beeps, voices or flashing lights. Other, similar devices are also on the market.

According to Tait, the best defense against putting an older person in danger is common sense. “For example, we asked the people we worked with to tell their doctors they wanted to take their diuretics in the morning instead of at night,” she says. “Otherwise, they’d be up half the night going to the bathroom, and for them, every time they do that at night, there’s a risk.”

Related Resources

Disability Rights in Private and Public Housing

Regardless of whether you live in private or public housing, rent or own, no one can treat you or your family members differently if one of you has a disability. Federal laws provide the following rights to persons with disabilities:

    • Prohibits discrimination against persons with disabilities. It is unlawful for a housing provider to refuse to rent or sell to you simply because of a disability. A housing provider may not impose different application or qualification criteria, rental fees or sales prices, and rental or sales terms or conditions than those required of, or provided to, persons who are not disabled.Example: A housing provider may not refuse to rent to your family if your daughter has a mental disability because he is uncomfortable with it. Such an act would violate the Fair Housing Act because it denies a person housing solely on the basis of their disability.


    • Requires housing providers to make reasonable accommodations for persons with disabilities. A reasonable accommodation is a change in rules, policies, practices, or services so that a person with a disability will have an equal opportunity to use and enjoy a dwelling unit or common space. A housing provider should do everything he can to assist, but he is not required to make changes that would fundamentally alter the program or create an undue financial and administrative burden. Reasonable accommodations may be necessary at all stages of the housing process, including application, tenancy, or to prevent eviction.Example: If you have a mobility impairment, a housing provider would make a reasonable accommodation by fulfilling your request for a reserved parking space in front of the entrance to your unit, even though all parking is unreserved.


    • Requires housing providers to allow persons with disabilities to make reasonable modifications. A reasonable modification is a structural modification that is made to you or your family member the full enjoyment of the housing and related facilities.Examples of a reasonable modification would include allowing you to: install a ramp into a building, lower the entry threshold of your unit, or install grab bars in a bathroom.Reasonable modifications are usually made at your expense. However, there are resources available to help you fund building modifications. Additionally, if you live in Federally assisted housing, the housing provider may be required to pay for the modification if it does not amount to an undue financial and administrative burden.


    • Requires that new covered multifamily housing be designed and constructed to be accessible. In covered multifamily housing consisting of 4 or more units with an elevator built for first occupancy after March 13, 1991, all units must comply with the following seven design and construction requirements of the Fair Housing Act:


  • Accessible Entrance on an Accessible Route
  • Accessible Public and Common-Use Areas
  • Usable Doors
  • Accessible Route Into and Through the Dwelling Unit
  • Accessible Light Switches, Electrical Outlets, Thermostats, and Environmental Controls
  • Reinforced Walls in Bathrooms
  • Usable Kitchens and Bathrooms


In covered multifamily housing without an elevator that consists of four or more units built for first occupancy after March 13, 1991, all ground floor units must comply with the Fair Housing Act seven design and construction requirements.

Definition of Disability

Federal laws define a person with a disability as “Any person who has a physical or mental impairment that substantially limits one or more major life activities; has a record of such impairment; or is regarded as having such an impairment.”

In general, a physical or mental impairment includes hearing, mobility and visual impairments, chronic alcoholism, chronic mental illness, AIDS, AIDS Related Complex, and mental retardation that substantially limits one or more major life activities. Major life activities include walking, talking, hearing, seeing, breathing, learning, performing manual tasks, and caring for oneself.

For information on how to comply with the physical accessibility requirements of the Fair Housing Act, visit the Fair Housing Accessibility FIRST website.

These requirements apply to most public and private housing. However, there are limited exemptions for owner-occupied buildings with no more than four units, single-family housing sold or rented without the use of a broker, and housing operated by organizations and private clubs that limit occupancy to members.

If you live in Federally assisted multifamily housing consisting of 5 or more units, 5 percent of these units (or at least one unit, whichever is greater) must meet more stringent physical accessibility requirements. Additionally, 2 percent of units (or at least one unit, whichever is greater) must be accessible for persons with visual or hearing disabilities.

People with Disabilities in Federally Assisted Housing: Federal law makes it illegal for an otherwise qualified individual with a disability to be excluded, solely because of his or her disability, from programs receiving federal financial assistance.

Zoning and Land Use: It is unlawful for local governments to utilize land use and zoning policies to keep persons with disabilities from locating to their area.

State and Local Laws: Many states and localities have fair housing laws that are substantially equivalent to the Federal Fair Housing Act. Some of these laws prohibit discrimination on additional bases, such as source of income or marital status. Some of these laws may impose more stringent design and construction standards for new multifamily housing.

The Americans with Disabilities Act: In most cases, the ADA does not apply to residential housing. Rather, the ADA applies to places of public accommodation such as restaurants, retail stores, libraries, and hospitals as well as commercial facilities such as offices buildings, warehouses, and factories. However, Title III of the ADA covers public and common use areas at housing developments when these public areas are, by their nature, open to the general public. For example, it covers the rental office since the rental office is open to the general public.

Title II of the ADA applies to all programs, services, and activities provided or made available by public entities. This includes housing when the housing is provided or made available by a public entity. For example, housing covered by Title II of the ADA includes public housing authorities that meet the ADA definition of “public entity,” and housing operated by States or units of local government, such as housing on a State university campus.


Related Resources

Build Boston 2007

Architectural endeavors resolve social issues like special needs.

Fundamental changes in the nature of architectural practice and building construction are taking place today. Those changes were clearly evident at the 2007 Build Boston convention and trade show. This conference has become, over the years, one of the key learning opportunities for the construction professions. And with over 15,500 attendees and a hall full of exhibitors, many workshops at the November conference were sold out in advance.

Read the full Article

Special Olympics Young Athletes

“Special Olympics has an important role to play in early intervention where a child has just been diagnosed with a learning disability. The program can support the parents and child in a positive manner especially at a time when negativity seems to prevail.”
— Patricia Hickey, Global Family Leader, Ireland

Young Athletes™ is an innovative sports play program for children with intellectual disabilities, designed to introduce them to the world of sports prior to Special Olympics eligibility at age 8. The pilot has been implemented thanks to the generous support of the Mattel Children’s Foundation.

The Young Athletes program strengthens physical development and self-esteem for children ages 2 through 7 by building skills for future sports participation and socialization. Family members and caregivers also are encouraged to become involved as the child learns success through physical activity.

Young Athletes is designed to address two specific levels of play:

  • Level 1 includes physical activities focused on developing fundamental motor tracking and eye-hand coordination play.
  • Level 2 concentrates on the application of Level 1 physical activities through a sports skills activity program. Level 2 also focuses on developing skills consistent with Special Olympics official sports.

Special Olympics is conducting this pilot phase of Young Athletes; it began in 2005 and will continue through early 2006. The pilot project is currently being evaluated by Special Olympics researchers and preliminary findings will be presented at the 2006 Special Olympics USA National Games in Ames, Iowa in July, 2006. Following the presentation of findings and subsequent adjustments of the program, Young Athletes will be made available to Special Olympics Programs throughout the world in the second half of 2006.

Young Athletes Resources

The Young Athletes program will consist of:

  • Play Activities Guide
  • Play Activities Training DVD
  • Young Athletes Equipment Kit

These resources, as well as funding opportunities, will be made available in the second half of 2006.

“The support of the Mattel Children’s Foundation and Mattel employees globally will not only help grow the Special Olympics movement to reach more of the 180 million people with intellectual disabilities worldwide, but also help us create a world of acceptance for Special Olympics athletes,” said Timothy Shriver, Special Olympics Chairman.

See more information about the Young Athletes pilot program and a list of pilot participants.

For more information, contact Ben Daniels, Global Manager, Family & Young Athletes, at bdaniels@specialolympics.org.

Related Resources

Social Cue Clueless? How to Help Your Child with Special Needs on the Playground

It can take time for children to learn the ins and outs of one of the most important social settings in a child’s life — the playground. Children with special needs may need a little help from you to guide them.

Rick Lavoie, a special needs educator and author of the book It’s So Much Work to Be Your Friend: Helping the Child with Learning Disabilities Find Social Success (Touchstone, 2005), says between 80 and 90 percent of children with special needs have problems communicating with other children on the playground. And, according to Lavoie, we shouldn’t be surprised that a child who has problems with memory, perception and comprehension in the classroom has those same problems on the playground or on the weekend when he goes to Grandma’s house. It’s these neurological-based problems, after all, that also can affect a child’s ability to socially interact.

Make a Date

Lavoie’s recommendation for combating this difficulty is for parents to get involved with their children’s friendships. Start by helping your child choose his or her friends. Next, help your child set up play dates. But, Lavoie warns, they have to be effective play dates.

“Today, play dates are the coin of the realm,” Lavoie says. “In my day, you just hung around in the neighborhood, but today kids have to have play dates. For special needs kids, they can be a disaster if the parents don’t set them up to work.” His tips for a successful play date include:

  1. Invite only one friend at a time. If you invite two, the two guests may hang around together and ignore the child with special needs.
  2. Send the child’s siblings away. The guest may find the sibling more appealing than the child with special needs, and the sibling and guest may pair off and ignore the child with special needs.
  3. Make the last 15 minutes of the play date memorable. Children tend to remember the last 15 minutes of any event. If you make it a good experience, for example by giving the kids a great snack, the guest will remember the play date as a positive experience and will be more likely to come back another time.


Show Them How to Play

Dr. Mary Ann Swiatek, a psychologist at KidsPeace, a national children’s crisis charity that works with children with special needs, says in addition to providing appropriate opportunities for kids with special needs to interact with other kids, parents should educate teachers and other children about their child’s disability. She also says modeling, or showing a child how to behave by having them observe your behavior, is a good way for parents to help their child with special needs learn social interaction.

Dr. Swiatek also suggests parents try empathy training. “Even if you’re just watching television you can have conversations about a character’s behavior in a situation, what the child thinks the character is feeling and what she or he thinks the character should do,” she says.

Both experts agree that when trying any of these techniques to help your child on the playground, you should expect it to take some time before seeing improvement. It all depends on each child’s unique circumstances. But one thing is certain: With the help of your love and support, it won’t be too long until your child is comfortable at play on the playground.

Related Resources

Hidden Disabilities on the Field: Working With your Child’s Coach

If you are the parent of a child that has a hidden disability such as ADHD, Asperger’s Syndrome, or Obsessive Compulsive Disorder, you know that new situations can be challenging. Still, when signups for a soccer camp or try-outs for gymnastics come along, you see a golden opportunity for your child to have fun, make new friends and be part of a team. But will the coach understand and accommodate your child?

Some coaches have had plenty of experience with children of all abilities. Other coaches are college students who are volunteering for the summer, or parents who have not encountered a child like your own. It’s up to you to build a relationship with your child’s coach to ensure a good experience on the field. Here are some tips to get communication the ball rolling.

  1. Explain your child’s situation to the coach. This can often times be the most difficult step to take. You may be concerned that your child will be labeled as a “problem” child or that the coach won’t give your child as much playing time. These are normal concerns and it is up to you to make sure the coach sees the “whole child” and not just the disorder or disability.So how much information does your child’s coach need? As a rule of thumb, you should only tell the coach what they need to know. Give them balanced information on your particular child, as well as the disability that they have. There is no need to get in depth with the coach, such as detailing symptoms that won’t crop up on the field.
  2. Be honest about behaviors the coach may encounter. Remember, coaches are often times volunteers. They may not have any experience dealing with children who have special needs. Give specific examples of the types of behaviors your child is most likely to exhibit to the coach. By letting the coach know what to expect up front, they will be able to better recognize behavioral patterns that they may not be used to.
  3. Discuss behavioral management guidelines with the coach. When you do this, you will put their mind at ease on how to discipline your child. After all, no coach wants a player to think they are “mean,” and they definitely do not want to mistreat a player that may have extenuating circumstances. If you get together with the coach and set down behavioral guidelines, they will be able to better communicate with your child, set rules, and know what type of discipline works.
  4. Learn the routine. Get a copy of the practice schedule well in advance and be sure you know when and where each game is held. Make a calendar at home that shows these dates, and be sure to go over them with your child. Give your child plenty of reminders before a practice session or game, to allow her time to adjust to the new schedule.
  5. Be a great cheerleader. If possible, stay and watch practices. Do not interfere with the coach, but be prepared to offer encouragement from the sidelines, just as you would during a game. This extra confidence booster will help your child, but it also shows the coach that you are dedicated to providing the extra support and encouragement that your child needs. Be available after each practice to discuss any behaviors that the coach wants help with.
  6. Encourage equality. Work together with the coach in order to ensure that your child has a good time, and that he or she is treated just like everybody else. If you are open and honest with the coach, and you welcome feedback, he or she should feel comfortable and confident in helping your child have fun and be a true member of the team.

By starting and maintaining an open relationship with your child’s coach, you will be able to address and prevent any problems that may occur. Let these tips guide you from the first day of practice until the last game of the season.

Related Resources


What’s So Special About Special Needs Planning?

When you first learned that your child had special needs, you probably began analyzing your home life, your child’s education and other immediate concerns. In time, you realized that your child’s needs would continue to evolve. How would you pay for medical expenses that insurance didn’t cover? What types of programs would your child qualify for as an adult? Where would your child live if something happened to you?

There are so many things to take into consideration that you may feel overwhelmed. You need a solid financial plan to help you make sense of a complex situation. Here are some reasons why working with a financial planner trained in special needs situations is not only a good idea but is also necessary.

Brings objectivity to a very emotional topic: A financial planner can look at a situation from a “big picture” standpoint. Traditional planners will look at the hard data, but a special needs planner will, more importantly, understand the story beyond the numbers and how all those pieces fit together to make a whole. The first step of every plan is to create a vision of what you want for your child and talk about what keeps you awake at night. Knowing those two things can make the difference between a plan consisting of only numbers and graphs and a plan that creates a map to your child’s future.

Identifies options and provides guidance: A great planner will present you with more than one option and provide sound direction. She breaks down the pieces and explains them in easy-to-understand terms. She has a knowledgeable staff to help with special needs situations and an efficient system already in place. When you walk into her office, she knows both your time and your money are precious and always remembers the sensitivity of the topics at hand.

Focuses on legal options: It is essential to have the appropriate legal documents written by a legal source. You may need a special needs trust or even a payback trust. As a parent of a child with disabilities, you also need to make sure your estate plan is solid. If you aren’t prepared, then your child’s care may suffer as a consequence. Special needs planners do not give legal advice, but they excel at providing a practical view of how an appropriately written trust will factor into your plan. A poorly written trust can jeopardize your child’s eligibility for benefits.

Maximizes benefits and programs: A special needs planner has a benefits department, which specializes in the myriad government and local benefits programs your child may be qualified to receive. This specialized area plays an essential role in your planning. Your planner can appoint a specialist to your family to work with you through the application process, which allows you to focus your attention and time on other things.

Understands that transition is the key: Once your child reaches adulthood, benefits can, and will, change. A planner will be able to guide you through this process utilizing not only financial options, but program options to make the transition as easy as possible for both you and your child.

Remains accessible: Unlike traditional financial planning, where graphs and numbers are followed, a special needs planner is accessible for the many developmental and situational changes your child will go through. Some planners work on an hourly basis, while others require a yearly retainer. Each option has its place depending on the complexity and nature of the situation as well as your preferences. A planner should be available to answer questions throughout the duration of your engagement.

Gets involved with the community: A planner who is involved with special needs organizations is informed about the issues that his clients face. Another benefit of being an advocate or activist in the special needs community is her knowledge of non-financial programs, support groups, recreational opportunities and many other resources your family might be interested in.

Financial planning is an essential part of providing the future care of your child. Every parent wants to know that their children will be safe and happy when they are not able to be there, lead a life as independently as they are able to and to have lives of their own. A financial planner who focuses on special needs can provide objectivity, guidance, knowledge and, most importantly, empathy to your family. Working together to create a solid financial plan, you and your planner can make your dreams for your child a reality.

Related Resources

Special Needs Trust: Put Money Aside Without Jeopardizing Benefits

As you have been moving through the process of providing for your child with special needs, you have probably heard that you need a “special needs trust.” Before you contact an attorney, let your special needs planner help you understand the use of this type of trust and how it will help you provide your child’s needs into the future.

This trust is an important part of the planning process. It lets people know what your wishes are regarding your child, but, more importantly, it can help your child qualify for benefits and programs that are vital to their health and happiness without impacting their ability to get government benefits.

What is a special needs trust? It is a vehicle that holds assets that are to benefit your child. It is also the instruction manual for how assets should be handled. It answers the question of who is in charge and if there are limits to how the money for your child is used. It can be set up by anyone except for the beneficiary, and it can be used for supplemental care for your child. The beneficiary of the special needs trust cannot be changed. However, the trust can, and should, be able to be amended if the laws change.

When do you create it? There are two times when you can create and fund a special needs trust. The first is at your death, and the second is now, while you are alive. Sometimes attorneys set up what is called a “testamentary trust,” which your will creates and activates only upon your death. However, certain laws could change before your death that could affect such a trust. It is cumbersome to change a trust that your will creates, so you might consider creating a special needs trust now. You can do this by having your lawyer draft a stand-alone trust. This way it will be easy to change the trust if the laws change. Your lawyer could assist into the future if and when any changes are needed.  It is important to check in with your attorney at least every 5 years to make sure no changes are required.

In addition, if the special needs trust is already established and the laws change, the laws set today would most likely be grandfathered into the trust. If your will creates the trust and you don’t change your will, the “testamentary trust” may not receive favorable treatment. Setting up a trust with the current laws also allows others to use or refer to the trust that the parents set up (such as for gifts or inheritances).

For example, Grandma wants to leave money to the child with disabilities. If the child receives the inheritance directly, it could disqualify them from getting government-based benefits or getting into certain programs. Under current laws, if Grandma names the trust as the beneficiary, this prevents the government from disqualifying the child from receiving benefits (provided the trust is drafted properly).

How do you fund a special needs trust? Any asset you wish to leave for the benefit of the child with disabilities, to include proceeds from life insurance policies, should be directed to the special needs trust. There are several ways that a trust can be funded: inheritance and/or lifetime savings on the child’s behalf.  It is very important that you remember to change the beneficiary of your retirement, annuity, IRA and life insurance accounts to the child’s special needs trust. Be sure to speak with a financial professional before you do this so that you are aware of certain tax consequences. Remember, anything that comes to the child directly may disqualify him/her from benefits and programs.

What happens if an asset comes directly to the child? Let’s assume that Grandma had several bonds that she had been buying for your child during the last 10 years and they are in the child’s name. This nice gift would disqualify the child from government benefits.  There is a solution to this problem. It is called a “payback trust” or OBRA 93 trust. The purpose of the payback trust is to place these assets owned by the child into the trust to be spent on supplemental care during the life of the child. However, when the child passes away, whatever is left in the trust reimburses the state for Medicaid benefits paid during the lifetime. Whatever is left after the reimbursement to the state(s) then passes on to the heirs.

This type of trust is also used in cases of divorce.  If child support is ordered by the court to be paid to the custodial parent, the child support, once the child is 18, is construed as income to the child which could cause loss of benefits.   However, if the child support is ordered by the court to be paid to the payback special needs trust, the benefits can be maintained.

What about setting aside money for my other children? This is a difficult decision for many parents. The heart tells us to divide the assets evenly, but that is not always the logical thing to do. The decision is not an easy one and involves several factors that are both tangible and intangible. Your other children may have more opportunities to do things for themselves than the child with a disability. They may have the chance to go to college, get married, have a job and have children. The child with disabilities may or may not. A special needs planner can help you walk through the decision-making process.

What do you mean that was the easy part? Setting up the special needs trust was the easy part. The hard part is choosing Future Care People™ for your child with special needs. You will need to consider who will want to handle the day-to-day living responsibilities, what goals you have for your child and who is willing and able to learn what is involved in making daily decisions for your child. Ask potential caregivers to take the child for the weekend and see how they manage.   Can they fit this into their lives if they have their own children?  Are they retired and will it disrupt their retirement?  Many things need to be considered here.

What are some other considerations that I need to be aware of? Have a conversation with your attorney about how to choose caregivers for your child in the event of your death. You may also want to decide if the guardian and trustee should be the same person. A special needs planner can help you through these emotional decisions before you get to the attorney’s office.

A special needs trust is a tool in the special needs planning process that provides for care above and beyond the basic living needs and allows you to maximize the benefits that your child receives. Having a knowledgeable special needs planner and estate attorney is an invaluable asset to you and your child. If you have not yet set up a special needs trust, you need to set up an appointment with a planner to discuss your situation and your next steps. It is too important for you to delay.

Related Resources

Guardianship: Things to Consider Before Filing a Petition with the Court

by Steve Raminiak, Esq.

This article provides general information about Guardianship of a disabled adult in Illinois.  However, similar rules apply in many other States.  For legal advice about your particular circumstances, please consult with an attorney.

If a loved one suffers from a developmental disability, or can no longer make decisions due to injury or illness, you will eventually consider whether to apply to be his/her Guardian.  While each situation is somewhat unique, your experience with a Guardianship1 Court will likely depend on answers to the following questions.

1.  Is this trip really necessary?  If your loved one’s disability did not begin in childhood, s/he may have signed Powers of Attorney which allow others to make decisions after s/he has lost the ability to do so.  If possible, look through your loved one’s records for these documents.  Redouble your efforts if you find a Will or a Trust prepared by a lawyer, as Powers of Attorney are often prepared to accompany those items.  However, your loved one cannot dodge Guardianship by signing new Powers of Attorney if s/he presently lacks the capacity to make decisions.

2.  Will anyone object?  The first steps in a Guardianship can be either pleasant and somewhat inexpensive or tortuous and extremely costly.  The difference primarily depends on whether your loved one will object to a Guardianship and/or if a family battle will arise over who shall be the Guardian.  Either fight will cause a great deal of strain on family relationships and generate legal fees far above that of a Guardianship where all peacefully consent.

Furthermore, once you start the process, the Court may see it through to the bitter end.  If the State has been alerted about a person who may be mentally disabled, some Judges take the position that it would be irresponsible and unjust to allow such a person to slip through the proverbial cracks unless a Guardianship is clearly unnecessary.  In practical terms, this means that a Guardianship proceeding may continue even if the family member who has filed the initial petition has caused a deep rift in the family and no longer wants to be involved.

Even worse, if you started the Guardianship process, you not only continue to be responsible for your own attorneys’ fees, but you may also become obligated to pay the fees and expenses of other attorneys appointed by the Court, even if you no longer want to be involved.  For example, in Cook County, Illinois, a separate attorney is often appointed as a Guardian ad Litem to interview all involved, report to the Court, and perform any other task that the Court might find helpful.  If your loved one resists Guardianship, an Illinois Court will likely appoint another attorney to assist him/her in defending against your Guardianship petition.  If your loved one lacks funds to pay for these professionals, or if a Guardianship is unnecessary, the Court will determine who is responsible for their fees.  In some states, including Illinois, their fees may be assigned to YOU!

Additionally, if you engage in litigation with another family member about who should be Guardian, and the Court finds that both of you are fit for the position, a Judge may block either side from recovering attorneys’ fees for that battle from your loved one’s Estate.

3.  When should you consult with an attorney?  Usually, close family members can detect the need for a Guardian long before it becomes immediately necessary.  I strongly suggest that you work with an attorney who is experienced in this area so that you can strategically choose when to start the Guardianship process and how to handle other members of your family.  By doing so, you minimize the chance that a “crisis” will erupt which could turn a simple, friendly process into an expensive nightmare.
It is helpful when time is on your side.  When I have been appointed as a Guardian ad Litem, I have often seen how unfortunate circumstances could have been avoided if greater care was taken at earlier stages.  It’s never too early to consult with an attorney about Guardianship and how you can navigate through this muddy, technical area as easily, harmoniously and cost-effectively as possible.

4.  How much will this cost?  Attorneys’ rates and Court fees vary by county and State.  In Cook County, Illinois (Metro Chicago), attorneys’ hourly rates usually range from $225 – $300 per hour.  In 2012, an “uncontested” Guardianship (where all peacefully agree or remain silent) can often be established in Illinois in less than 10 hours of an attorney’s time during a period of about 40 days.  I would not hire an attorney who does not regularly address Guardianship matters.  You will likely be unsatisfied with the results.  The unusually technical nature of Guardianship proceedings often confuses attorneys who do not often practice in this area.  If your loved one has funds and consents to the Guardianship, s/he will probably be responsible for paying all legal fees and costs.  However, if a Guardianship becomes “contested,” as described above, the legal fees can skyrocket and you may be held personally liable for some or all expenses.

As you consider this, I strongly encourage you to speak with an attorney who has years of experience with Guardianships.  If your loved one lives in Illinois, feel free to contact me, even if you intend to use another attorney.  I always provide free consultations.

1 Guardianship is a general term and may be referred to as Conservatorship in some states.

The Law Offices of Steve Raminiak, P.C. provides counsel for estate planning and the administration of estates and trusts established for decedents, minors and disabled persons.  Steve regularly tackles contested estates, and has been appointed as Guardian ad Litem, Special Administrator, and as counsel for minors and the disabled by Judges in the Probate Division of the Circuit Court of Cook County.

Steve serves as a resource for Chicago Volunteer Legal Services (CVLS) by handling pro bono matters and providing direction to volunteer attorneys.  He also contributes to Lawguru.com, a site that offers free answers to legal questions. Steve speaks with groups about estate planning and how to assist elderly or disabled family members with financial and legal issues.  He also hosts seminars for lawyers about probate procedures.

Divorce and Planning for the Disabled Child or Spouse

by Theresa M. Varnet, M.S.W., J.D.

There have been a number of studies that show that when a spouse becomes disabled or if there is a child with special needs born to the family, the likelihood of a divorce increases substantially.  Some studies indicate a divorce rate as high as 86%.  Nearly one out of ten families have an immediate family member challenged with a disability. Despite these statistics, family law attorneys seldom give thought to how the receipt of alimony and/or child support will affect the disabled spouse’s or disabled child’s eligibility for needs based government benefits such as SSI and Medicaid.

The duty and obligation of a parent to care for his or her children does not necessarily end when the child reaches a certain age.  When a party in a divorce action has a disability or  has  a  child  with  a  disability who  is  receiving  Supplemental  Security Income (SSI) and/or Medicaid or who may need these benefits in the future, the divorce agreement needs to be structured so that the divorcing spouse or child of the marriage is not left in a worse off position due to the receipt of alimony or child support.

Alimony paid to a spouse who is disabled counts as unearned income and may render the spouse totally ineligible for critically needed government benefits including Medicaid, SSI, in home supports and services and residential placement if needed.

Child support is treated differently than alimony.  Assuming the family income is below the family income allowance for SSI, child support to the custodial parent, while the child is under the age of 18, will reduce the child’s SSI check by as much as one-third. However, once the child reaches the age of 18, the receipt of cash child support is deemed as unearned income and will result in a dollar for dollar loss in SSI.  If the child support paid is greater than the current maximum SSI payment ($721 in 2014), the adult child  will  not  only lose  his  or  her  eligibility  for  SSI but  may lose  eligibility  for Medicaid.   Medicaid is critical when an adult disabled child ages out of the public school system.  Medicaid is the “ticket” for adult services.  “No Medicaid” means “no services” in most states.

Alternate forms of payments for child support or alimony should be considered as some payments are not deemed or counted by SSA in determining eligibility for SSI and Medicaid.  Rather than pay child support or alimony in the form of cash, the non custodial parent or ex-spouse could pay directly for goods and services such as after school  child  care,  additional  therapies,  private  school  tuition,  automobile  expenses (such as car payments, car repairs, insurance and gasoline), housekeeping services, additional Personal Care Attendant hours, telephone, cable TV or internet.

Another option is for the divorce settlement agreement to assign all child support or alimony payments to a Qualified Special Needs Trust.  A Qualified Special Needs Trust sometimes called a ‘payback trust’, OBRA’93 Trust, D4(A) or D4(C) trust is different than the typical third party special needs trust parents often use to provide for a special needs child in their will or living trust.  Not all persons with disabilities can use a Qualified Special Needs Trust.  To establish a qualified special needs trust, the person must meet the definition of “disabled’ under SSA rules (42 U.S.C. Sec. 1382c(a)(3)). For those for whom the Qualified Special Needs Trust is appropriate, it may allow a greater flexibility in structuring a divorce settlement agreement so that the spouse with a disability or adult disabled child can better protect assets and income and enjoy a better quality of life.Many family law attorneys are not familiar with a Qualified Special Needs Trust. Lawyers drafting these trusts require knowledge in trust law, tax law, Medicaid law and guardianship law.  All parties in a divorce who are challenged with a disability or who have a child with a disability should ask their family law attorney to consult with an attorney who is familiar with this special needs planning option.

Therapy Equals Fun!

“Therapy” and “fun” may be two words that you do not expect to see in the same sentence, but for participants at a place called A Big Blast, those two words fit together perfectly. Children with special needs who live near the northern suburbs of Illinois now have an opportunity to mix therapy with a big dose of fun. A Big Blast is the first company in the Midwest to offer gymnastics in a standard gymnasium setting to children who require occupational and physical therapy.

“It has been proven that physical activity in children has huge benefits in their development,” said Penzell. “When you combine this physical activity with other therapies, the results are staggering. Our gymnastics training has translated into improved speech, physical abilities on the school playground and improved relationships with parents and friends.”

The fun is not limited to gymnastics, however. A Big Blast introduced cheerleading and dance classes at their Gurnee location. Recently, the Carmel High School Junior Varsity Cheer Squad from Mundelein, Illinois, teamed up with special needs “buddies” from A Big Blast to spend a fun-filled hour each week working on jumps and cheers.  After perfecting their routines and a fantastic half-time show, the cheerleaders and their buddies took to the field at a regular season JV football game and even cheered together at the big Homecoming game! The Carmel cheerleaders and their buddies not only had a “big blast” cheering together, but made memories that will last a lifetime.

If you would like additional information on A Big Blast therapies, camps or the Special Olympics team, please contact Sue at A Big Blast at 847-987-3940.

If you know of an organization or individual doing great things for special needs individuals, please consider sharing your information with us for a future issue of the newsletter. Please send your ideas to info@protectedtomorrows.com.

Team Hoyt Proves to be Powerful Role Model

When Rick Hoyt was born in 1962, he was strangled by the umbilical cord during birth, and that incident left him unable to walk or talk.

The doctors advised Rick’s parents, Dick and Judy Hoyt, to institutionalize him because they thought that he would be a vegetable. However, the Hoyts thought that was terrible advice, and discarded it altogether. They soon realized that the doctors were dead wrong!

“When Rick got his eyes opened, they were following mine and my wife’s,” said Dick Hoyt, in a recent phone interview. “He was looking at us. His eyes were unbelievable. If you talked or made noises, he reacted. He paid attention.”

They decided to treat Rick just like their fully able-bodied children. For example, when Rick’s brothers played hockey in the neighborhood, Rick was included. Hoyt remembered: “We took him on the ice in his wheelchair and we’d push him around. We put a hockey stick on his chair. We used to skate around with him, so he could use the puck and not play goalie all the time.”

According to Rick’s father, the neighborhood children included Rick in a lot of activities. “They treated him like everyone else because they saw that we did.”

His parents were also as strict with him as they were with their other children.

“A lot of families spoil their disabled children,” said Hoyt. “We never did. We were hard and firm with Rick like we were with our other kids. One time we were in a restaurant and Rick was acting up, so I told him that if he didn’t stop, I’d put him in the van by himself. He kept acting up, so I put him in the van and went back in the restaurant. He couldn’t believe I did that. We never let him get away with anything.”

The Hoyts had high expectations of Rick and saw no reason why he shouldn’t go to public school. However, the area school district administrators objected. Hoyt said: “They told us ‘he doesn’t understand, he won’t be able to learn.’ So we took him to Tufts University (in 1973) and met some engineers. They said the same thing, so we told them to tell Rick a joke. They did and Rick cracked up laughing. They said ‘maybe there is something there. If you raise five thousand dollars, we’ll build a communicating device for Rick.’ We raised the money.”

The Tuft engineers built an interactive computer that allowed Rick to write out his thoughts using the slight head-movements that he could manage. A cursor would move across a screen filled with rows of letters, and when the cursor highlighted a letter that Rick wanted, he would click a switch with the side of his head.

Rick’s first words were not ‘Hi Mom, hi Dad, Thank you, I love you’. They were ‘Go Bruins!’ It turned out that Rick was a big Boston Bruin (ice hockey) fan, just like his brothers.

By 1975, the public school administrators saw that Rick could communicate and comprehend everything, so they finally admitted him.

Two years later, Rick made an unselfish gesture, which would ultimately enhance his quality of life.

An area lacrosse athlete was badly injured, so Rick’s local community organized a 5-mile run to defray the medical costs. Rick told his overweight, out of shape father that he wanted to participate, and asked him to push him in the wheelchair. His father obliged.

Rick’s desire to help someone in need, a person far less disabled than himself, didn’t surprise his father. “We raised Rick to think of other people.”

After they finished the race, Rick wrote on his computer that it was the first time it felt as if his disability had disappeared.

“He can’t use his arms or legs, then to say his disability disappears, that’s powerful,” said Hoyt.

Rick and his father entered a series of road races, and never felt discouraged. Even in the beginning — when they knew the race directors, the other runners and the wheelchair entrants didn’t want them competing — they pressed on. “They all snubbed us,” said Hoyt, “but that didn’t matter. Every time we raced, Rick had a huge smile on his face, his arms were up in the air, he was so happy. He called himself free-bird, because he never felt so free before.”

Eventually, the officials and all the race entrants warmed up to the Hoyt Team.

“They could see that Rick had quite a personality and a great sense of humor.”

The only people who objected were able-bodied people who had relatives with disabilities. “They used to call me and send me letters asking, ‘what are you doing dragging your disabled son through all these races? You’re looking for glory for yourself!’ They didn’t realize that Rick was dragging his father through all these races. I did these races because Rick wanted to. Otherwise, I wouldn’t have been out there.”

Dick Hoyt said that thanks to Rick, he became incredibly fit. Dick’s good conditioning helped him survive a heart attack four years ago. “The doctors told me that if I were out of shape, I’d be a goner. Rick saved my life.”

For over 25 years, Team Hoyt have competed in over 940 events, including a couple dozen Boston Marathons. In addition, they also competed in the Iron Man Triathlon in Hawaii.

No matter what events they compete in, fellow athletes tell them that they’ve been a true inspiration.

“As long as Rick and I keep having fun, we’re going to keep at it,” Dick Hoyt concluded.

For more information about Team Hoyt, log on to www.teamhoyt.com.

Road Trip for a Great Cause

Jon Singer and his 14-year-old daughter, Rebecca, will be setting off on a special father/daughter road trip in mid-April. Theirs, however, is no ordinary vacation. Jon and Rebecca will be making an epic 3,500 mile, cross-country journey from New York to California to raise $1 million for charities helping children with special needs and to promote parent advocacy. Their cause, Drive4Rebecca, is named for Rebecca, who suffers from a rare genetic disorder called Phelan-McDermid Syndrome, which causes autistic tendencies. “Kids with special needs are at a huge disadvantage when their parents don’t know their rights or are unable to advocate for the best education,” said Jon.  “Let’s not leave these children behind.”

The Drive4Rebecca, which originally kicked off with a cross-country driving tour in 2002, is a journey of hope to support research, education and advocacy, and to ensure that children with special needs are, indeed, not left behind. During their next 10-day adventure, Jon and Rebecca will give families in seven cities across the country the opportunity to associate a “real face” with their cause.  Drive4Rebecca also hopes to help parents become stronger advocates. “As my family learned first-hand, there is still a long way to go toward helping families to become stronger advocates for their children. I can think of no better way to assist in this battle than by joining my daughter in a cross-country drive, allowing us to share our story with other families along the way to encourage parents to stand up and be strong when advocating for their children,” Jon said.

Jon and Rebecca’s cross-country trek will also promote the use of specialized Apple technology that can assist individuals with disabilities. Families will have the opportunity to join Jon and Rebecca for special celebrations along their route and at select Apple stores during their trip. They will also be the honored guests of Protected Tomorrows at a special event to be held at our Protected Tomorrows LifeCare Center (Lincolnshire, Illinois) when they arrive in the Chicagoland area in April.  More information on this event will be published in our next Protected Tomorrows Today e-newsletter and will be listed on our Events and Workshops calendar at www.protectedtomorrows.com. Drive4Rebecca’s mission aligns very closely with that of Protected Tomorrows, and we are very excited to be able to host this event in an effort to bring heightened awareness to their cause.

In conjunction with their $1 million fundraising goal, individuals will be able to make donations through Crowdwise.com, an online fundraising site started by actor Edward Norton. This site allows individuals to select any charity they wish to help children with special needs.

If you would like to meet Jon and Rebecca along their route, or would like more information about the Drive4Rebecca cause, visit their website at www.Drive4Rebecca.org.

The Power of Film

When someone mentions film festivals, we often think of Cannes, Toronto and Sundance, along with images of the ‘A’ list celebrities who attend these events. There is another film festival, however, that may not be as well-known, but is certainly just as important in its mission.

The Sprout Film Festival (SFF), now in its 9th year, gives filmmakers the opportunity to showcase their original, groundbreaking programming featuring individuals with developmental disabilities.  By casting individuals with developmental disabilities in leading roles in their films and videos, these filmmakers are able to present audiences with an authentic, accurate portrayal of this special group of people.  Individuals with developmental disabilities are often overlooked or misunderstood as performers by the media. The projects featured at SFF serve to not only enhance the group’s image, but also gives audiences a heightened awareness of the critical, often difficult, issues they face on a daily basis.

Founded in 2003, SFF is supported by Sprout, a New York City-based non-profit organization.  Providing individuals who have developmental disabilities with original, inventive programming is at the heart of Sprout’s mission.  For more than a decade, Sprout has been creating videos that have had tremendous benefit to those with developmental disabilities, as well as the general public.  An offshoot of the festival, Sproutflix, offers films from the festival for purchase.

The Metropolitan Museum of Art in New York City presented the Sprout Film Festival from April 29 through May 1. Fifty extraordinary films from 16 different countries highlighted disabilities such as Down syndrome, aspergers and autism.  Sprout is also making available, through Sproutflix, a captioned version of the documentary, Willowbrook:  the Last Great Disgrace, a 1972 exposé which focused on an institution located in Staten Island, New York.  As a result of the exposé, the way in which people with disabilities were treated was forever changed.  The projects presented at SFF are a testament to the power of film and its ability to educate and, more importantly, act as a change agent in our society.  Through the films it showcases, SFF provides a venue to inspire, educate and connect with its audiences on a deep and meaningful level.

SFF’s goal to entertain and educate the general public about individuals with developmental disabilities is very similar to that of Protected Tomorrows.  If audiences come away from the festival with a greater appreciation of the similarities and differences that exist between individuals with developmental disabilities and the general population, then SFF has attained its goal.  Advocating for individuals with disabilities to break down the stereotypes surrounding them as well as promoting a “normal” live, learn, work and play environment are critical components of what SFF and Protected Tomorrows strive to accomplish in the services they provide.