Expert Q&A

Another factor to consider prior to choosing your mother’s new home is whether the apartment is on ground floor and is accessible by wheelchair from the curb to the front door. You mentioned that the doorways and hallways inside the home are wider than others you’ve seen, but also make sure that the front door and connecting entryway also have enough width to be accessible to and from the apartment.

When the decision is complete and you are considering making the first modifications, I would focus on doors, windows, the bathroom and the kitchen area. Sliding doors that disappear into the walls are better than swing doors. This allows more manuvering space when entering and leaving a room. Also, this type of door modification is easier to accomplish than widening hallways. Similarly, windows should be easy to operate. Windows that slide horizontally are preferred over windows that open vertically. Make sure that the bathroom is modified with the correct sink height for wheelchair accessibility and has easy access to the shower and toilet. In the kitchen, make sure that below-counter kitchen cabinets have adjustable shelving. Lastly, consider installing lights that are motion sensitive.

When a child is under 18 and the parent applies for SSI on behalf of the child, a portion of the parents’ income and resources is considered in determining the financial eligibility of the child. This process is called deeming. With this type of application, the Social Security Administration asks for an accounting of the parents’ income and resources, in order to determine what portion to “deem” as belonging to the child. Certain types of income are not included, such as foster care stipends for other children in the family and Social Security payments to the parents. Certain resources are also allowed – a house, a car, personal possessions and either $2,000 or $3,000, depending on whether there are one or two parents in the home. Once the income and resources are determined, they are compared to the family size to see if the child meets the financial criteria for SSI. If so, the child must also meet the clinical criteria before an award will be issued.

A family need not be destitute in order for the child to be financially eligible. For example, with a family consisting of two parents and one child, the family income, after deeming, can be approximately $37,000. for the year and the individual may still qualify for SSI. As the family size increases, so does the allowed amount.

If he is collecting Social Security Disability based on his work record, the inheritance should not affect the disability income. If, however, he is receiving Supplemental Security Income (SSI), the inheritance will disqualify him from receiving benefits. Depending on his age, it might be possible for your uncle to have a Special Needs Trust established for him in order to protect both the inheritance and the benefits.

If the swing chair is to be attached to the ceiling, make sure that the structure of the ceiling is capable of the load it will be subjected to when the swing is in use. Make sure that the suspension attachment between chair and the ceiling is designed for the imposed load. Lastly, make sure that the floor is capable of the impact load should there be a mishap.

It sounds like you have worked, and I will assume you have obtained Social Security credits to obtain Social Security credit. If that is the case, the money in your savings account will not impact your ability to obtain Social Security disability benefits. If you meet the guidelines to obtain Social Security disability (which means your ability to work is significantly impacted by your disability), then you should apply to the Social Security Administration to receive your disability benefit. Depending upon your disability, you may have to wait up to 5 months from the beginning of the disability to be eligible for the benefits to start.

If you do not have enough Social Security credits to obtain disability benefits, then the money in your savings account will impact your ability to get a government benefit. In order to obtain Supplemental Security Income (SSI), the assets you can have are limited. These depend upon your personal situation, but if you contact our Protected Tomorrows Benefits Processing Center with the specific information, they will be able to assist you with the specific details for your personal situation. There are opportunities to obtain both SSI as well as Medicaid if you meet the guidelines.

Inclusion is a term that is widely used in special education. Inclusion means that a child or person with a disability is placed in a typical setting with same-age peers, rather than being pulled out or separated for special programs. Related services, such as physical and occupational therapy are still available as part of inclusive programs and may even be integrated into the program. Instruction by special education staff and an IEP are all still in place.

Preschool inclusion programs typically follow one of two models. In the first model, typically developing children are enrolled in the school district’s preschool programs for children with disabilities. These typically developing peers participate in the same programming as the child with disabilities and there may even be a regular preschool teacher that co-teaches with the special education preschool staff. In the other model, children with special needs are enrolled in community preschools that would normally only enroll typically developing children. This model allows for all children to be in the least restrictive environment and in a natural setting. Professionals work together to support all children. The special education teacher may co-teach at the community preschool, or she may just visit several times a week to help the preschool teacher support special needs students. Speech, OT, and PT will also consult with the preschool teacher and will typically see the child for therapy at the preschool site. This allows for the generalization of skills. In addition, the preschool staff should receive training in disability awareness, as well as in specialized teaching and behavioral methods in order to support students included in her class.

Any parent would be hesitant to have their child labeled; however, if the school professionals do not have all the pertinent information about your child, then they are unable to fully help because pieces of the puzzle are missing. Also, while you have every right to keep your child’s diagnosis private, you must also realize that you may be risking his safety if he were to have anything happen at school (reactions to medication, for example).

When you speak with the school about his diagnosis, be upfront and honest about your concerns and also about your expectation that this diagnosis and any surrounding decisions as part of his behavior plan or IEP be kept confidential. All school systems are bound by federal mandates that require information about a child, including his diagnosis, evaluation results, and IEP, be kept confidential. Schools must have procedures for this and must inform parents on how they keep confidentiality intact.

Another idea is to use your current child psychiatrist as part of your child’s committee, if he/she is willing. Parents have the right to bring any person who has knowledge of their child to part of the planning process. Many times, doctors and other professionals can help school personnel to see the positive side of things and can also help ensure that the plan developed is right for your child. Also, please remember that while there is negative stigma surrounding a mental health diagnosis, the school officials are on your side and only want the best for your son. Partnering with them and working together as a team is the best situation for your son to succeed.

Several things need to be taken into consideration when we’re working with someone with her condition:

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• Although you are dealing with a child at this time, what do you see for her in the future? Supported employment? Workshop employment? Residential living?
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• Does your existing health insurance remain in effect when your child turns 21 and is no longer a full-time student?
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• What assets are presently in her name? (Example: savings bonds, life insurance, stocks, mutual funds, homes, etc.)
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• Is there a possibility of inheriting any money or assets?

Once we have answered these questions we’re ready to look at what benefits she may be eligible to receive and how to best position her assets and income.

Here is a brief explanation of government benefits that in the future your daughter may or may not be eligible for but that you may want to investigate:

•  
• SSI – Supplemental Security Income. This is a federal income supplement program funded by general tax revenues (not Social Security taxes). Its purpose is to help the aged, blind and disabled who have little or no income. It currently provides a maximum of $552 per month to be used for basic needs such as food, clothing and shelter.
•  
• SSDI – Social Security Disability Insurance. This is a federal cash benefit that may be available if a person is disabled. It pays benefits to the individual and certain members of the individual’s family if you are “insured,” meaning that you worked long enough and paid Social Security taxes.
•  
• Medicare – This is a federal health insurance program for people 65 years of age or older, certain younger people with disabilities and people with end-stage renal disease (permanent kidney failure with dialysis or a transplant). Medicare does not cover everything, and it does not pay the total cost for most services or supplies that are covered.
•  
• Medicaid – This program provides medical assistance for certain individuals and families with low incomes and resources. Medicaid eligibility is limited to individuals who fall into specific categories. Although the federal government establishes general guidelines for the program, the Medicaid program requirements are actually established by each state. In addition to paying for some medical services and prescriptions, Medicaid may also pay for residential facilities, workshops and other programs.

In addition to the above-mentioned programs, individuals with cerebral palsy may have additional needs or may encounter other situations where additional funds are required.

Is there a way the disabled individual can shelter some of his or her money yet still qualify or maintain the above benefits without being impoverished? Yes. An individual may set up a Special Needs Trust that will permit this. The following are the most common types of Special Needs Trusts:

Discretionary Supplemental Needs Trust or 15.1 – A trust than can hold cash, personal property or real property or can be the beneficiary of life insurance proceeds. Simply stated, other people’s money or property that they chose to contribute or leave to you.

Discretionary Supplemental Care Trust or d(4)A – A trust that can hold cash, personal property or real property that is owned by the individual with cerebral palsy. This can only be set up by parents, grandparents, legal guardians or the court.

When thinking about trusts, it is imperative that you speak with an attorney who has extensive experience and knowledge in the Special Needs Trusts arena.

I hope this answers your questions. It would be in your best interest to meet with a planner and attorney who are familiar with your type of situation and are able to give you the sound advice you need to better prepare for the future.

Several things need to be taken into consideration when we’re working with someone with your diagnosis:

• Is your goal to keep working as long as possible?

• Do you have Short Term and/or Long Term Disability?

• Does your existing health insurance remain in effect if you are on Short Term or Long Term Disability?

• Do you have or will you have any expenses related to your condition that allow you to continue to work? (This includes adaptive equipment, transportation, etc.)

• What assets are presently in your name? (Example: savings bonds, life insurance, stocks, mutual funds, homes, etc.)

• Is there a possibility of inheriting any money or assets?

Once we have answered these questions, we’re ready to look at what benefits you may be eligible to receive and how to best position your assets and income.

Here is a brief explanation of government benefits that you may or may not be eligible for but that you may want to investigate:

• SSI – Supplemental Security Income. This is a federal income supplement program funded by general tax revenues (not Social Security taxes). Its purpose is to help the aged, blind and disabled who have little or no income. It currently provides a maximum of $552 per month to be used for basic needs such as food, clothing and shelter.

• SSDI – Social Security Disability Insurance. This is a federal cash benefit that may be available if a person is disabled. It pays benefits to you and certain members of your family if you are “insured,” meaning that you worked long enough and paid Social Security taxes.

• Medicare – This is a federal health insurance program for people 65 years of age or older, certain younger people with disabilities and people with end-stage renal disease (permanent kidney failure with dialysis or a transplant). Medicare does not cover everything, and it does not pay the total cost for most services or supplies that are covered.

• Medicaid – This program provides medical assistance for certain individuals and families with low incomes and resources. Medicaid eligibility is limited to individuals who fall into specific categories. Although the federal government establishes general guidelines for the program, the Medicaid program requirements are actually established by each state. In addition to paying for some medical services and prescriptions, Medicaid may also pay for residential facilities, workshops and other programs.

In addition to the above mentioned programs, individuals with SMA may have additional needs or may encounter other situations where additional funds are required. For example, some may have worked and have money in various savings plans.

Is there a way the individual with SMA can shelter some of his or her money yet still qualify or maintain the above benefits without being impoverished? Yes. An individual may set up a Special Needs Trust that will permit this. The following are the most common types of Special Needs Trusts:

Discretionary Supplemental Needs Trust or 15.1 – A trust than can hold cash, personal property or real property or can be the beneficiary of life insurance proceeds. Simply stated, other people’s money or property that they chose to contribute or leave to you.

Discretionary Supplemental Care Trust or d(4)A – A trust that can hold cash, personal property or real property that is owned by the individual with SMA. This can only be set up by parents, grandparents, legal guardians or the court.

When thinking about trusts, it is imperative that you speak with an attorney who has extensive experience and knowledge in the Special Needs Trusts arena.

I hope this answers your questions. It would be in your best interest to meet with a planner and attorney who are familiar with your type of situation and are able to give you the sound advice you need to better prepare for the future.

Several things need to be taken into consideration when we’re working with someone with her condition:

• Although you are dealing with a child at this time, what do you see for her in the future? Workshop employment? Residential living?

• Does your existing health insurance remain in effect when your child turns 21 and is no longer a full-time student?

• What assets are presently in her name? (Example: savings bonds, life insurance, stocks, mutual funds, homes, etc.)

• Is there a possibility of inheriting any money or assets?

Once we have answered these questions we’re ready to look at what benefits your daughter may be eligible to receive and how to best position her assets and income.

Here is a brief explanation of government benefits that in the future she may or may not be eligible for but that you may want to investigate:

• SSI – Supplemental Security Income. This is a federal income supplement program funded by general tax revenues (not Social Security taxes). Its purpose is to help the aged, blind and disabled who have little or no income. It currently provides a maximum of $552 per month to be used for basic needs such as food, clothing and shelter.

• SSDI – Social Security Disability Insurance. Social Security Disability Insurance is a federal cash benefit that may be available to a person who is disabled. It pays benefits to the individual and certain members of the individual’s family if you are “insured,” meaning that you worked long enough and paid Social Security taxes.

• Medicare – This is a federal health insurance program for people 65 years of age or older, certain younger people with disabilities and people with end-stage renal disease (permanent kidney failure with dialysis or a transplant). Medicare does not cover everything, and it does not pay the total cost for most services or supplies that are covered.

• Medicaid – This program provides medical assistance for certain individuals and families with low incomes and resources. Medicaid eligibility is limited to individuals who fall into specific categories. Although the federal government establishes general guidelines for the program, the Medicaid program requirements are actually established by each state. In addition to paying for some medical services and prescriptions, Medicaid may also pay for residential facilities, workshops and other programs.

In addition to the above-mentioned programs, individuals with Rett Syndrome may have additional needs or may encounter other situations where additional funds are required.

Is there a way the disabled individual can shelter some of his or her money yet still qualify for or maintain the above benefits without being impoverished? Yes. An individual may set up a Special Needs Trust that will permit this. The following are the most common types of Special Needs Trusts:

Discretionary Supplemental Needs Trust or 15.1 – A trust than can hold cash, personal property or real property or can be the beneficiary of life insurance proceeds. Simply stated, other people’s money or property that they chose to contribute or leave to you.

Discretionary Supplemental Care Trust or d(4)A – A trust that can hold cash, personal property or real property that is owned by the SMA individual. This can only be set up by parents, grandparents, legal guardians or the court.

When thinking about trusts, it is imperative that you speak with an attorney who has extensive experience and knowledge in the Special Needs Trusts arena.

I hope this answers your questions. It would be in your best interest to meet with a planner and attorney who are familiar with your type of situation and are able to give you the sound advice you need to better prepare for the future.

Your mother needs to know that she is not alone. It is common for mature adults to experience various forms of disability as they age. The good news is that more resources and options exist today than ever before. Most of us place great value on our independence and your mother fears losing hers. Reassure her that help is available and, while some changes may be necessary, you understand and respect her desire to remain independent. Virtually all states have a Department on Aging that may prove helpful in identifying resources in your local area. You may also want to contact your nearest Protected Tomorrows licensed advocate for assistance.