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Q: My daughter with SMA (spinal muscular atrophy) is 17 and I’ve been told I should have applied for government benefits for her. Is this true, and if so how do I do this?
-Concerned Mom
A: Yes, you should be getting ready to apply for benefits. Whether she is qualified may depend upon YOUR own assets and income and your daughter’s assets and income. In many cases, she will not qualify until age 18. This is because before she is 18 your assets and income will count; and at age 18 only HERS will be considered on the application.
If your daughter is considered disabled by Social Security rules, then she should be eligible for SSI and Medicaid. However, there are asset and income limitations. To qualify for the maximum SSI benefit, your daughter cannot have current assets greater than $2,000 or income greater than $85 a month.
Q: I know that setting up some kind of trust for our child with a disability is critical, but how soon does this need to be done?
A: Setting up the trust is critical NOW, not later. Some day you may not be here and you will still want to provide for your son through an inheritance. How do you do this when he can’t have more than $2000 in his name or he will lose benefits? A discretionary Special Needs Trust is the document you use and you can leave money in your will to be directed to this trust. A special needs planner can direct you to qualified attorneys who are knowledgeable about these trusts in your state. None of us knows how long we will live so be sure your will and the trust are prepared as soon as possible to protect the future of your child with a disability.
Q: We have a child with a disability and know that she cannot have more than $2000 in her name. We have put money aside for her in our other child’s name, but don’t know if this is the right thing to do. Would it be better to leave it with an aunt or uncle?
A: If you are alive and in control of the money, either might work. But if something happens to you there are great risks involved. A sibling or aunt and uncle might have the best of intentions, but what if they had IRS problems or if one of them was to be sued? Or what if there was a divorce? The money intended for your child with a disability would be at risk. That is why we use a Special Needs Trust instead of leaving money to siblings or other family members.
Q: We have a child with a disability and have been told he should get SSI assistance. What is SSI and why should he receive it?
A: SSI is supplemental security income. It is government entitlement for those with a disability who have not paid into Social Security. The definition of disability must be met first and then secondly the individual’s assets must be below a certain level. If your child is under the age of 18, mom and dad’s assets and income will count in the calculations. If your child with the disability is 18 or older only their assets and income will count.
This is an important benefit for your child if you anticipate that he/she will not be able to provide for his/her own financial future. This will be the base of their support, upon which you can help them build some financial security.
Q: We have been told our daughter with a disability should be placed in a residential facility because she is a danger to our other children. We are devastated but need to do something. Where do we begin?
A: I understand that this is very difficult for your family. If you have researched all of the possibilities for help, and still feel that your child presents a danger to your other children, you should contact the local case management coordinator for your area. They will help you assess appropriate placement and explain the options that might be available to your family.
Q: I have recently received a liver transplant and have very expensive medications. Is there any way to get help with paying for them?
A: If you do not have medical insurance which covers these expenses you might contact The Department of Human Services to determine if you are eligible to receive Medicaid. There are asset and income limitations to this program but it certainly doesn’t hurt to examine this possibility.
Another alternative might be to contact the drug company directly to see if they have a special program to obtain this drug at a discount or to determine if they have any special programs for those who cannot afford the necessary medications.
Q: Why do so many young people with disabilities end up having to live out of state instead of in residential facilities in Illinois?
A: The number of young adults in Illinois who need assistance is staggering, and the funding is not available to provide all of the necessary support. Other states might be more likely to fund these types of programs, or perhaps a specific need is best addressed in a particular out-of-state program.
You might consider contacting your legislator to ask that same question.
Q: Our son has a disability but has some good skills and we think he could work somewhere. Is there anyone who would help place him in a job?
A: There are a couple of alternatives in helping your son find a job. You will soon recognize that you are the best advocate for your son, so you might contact some companies directly that you think might employ him. Other options might be to contact local agencies which provide services to the developmentally disabled. This type of agency might have a supported employment program. Another option is to contact your local case management program so that your son is signed up with a caseworker. They can help you evaluate the best options for your son.
Q: My daughter has been ill for a while and has just been diagnosed with Multiple Sclerosis. Her father couldn’t cope with this and has left us. I don’t make much money and don’t know where to turn. Can you advise us what to do?
A: There are a few places to look. First, based upon your daughter’s age, she might be eligible for Social Security and/or Medicaid benefits. Contact your local Social Security agency office to start. Next you should contact the local chapter of the MS Society; they have support groups that provide significant moral support, which is very important right now for you and your daughter.
Q: We are 70-year-old parents of a 35-year-old son with a disability who has lived at home with us his entire life. We are very worried about what will happen to him when we are gone or can’t take care of him any longer. What should we do?
A: I know this is a difficult thing for you to think about. Most parents just want to live “one day longer” but know that they must plan. Is your child receiving government benefits? If so, you will need to plan financially for him through the use of a Special Needs Trust. In that way, you can financially leave assets through your own will or trust for his supplemental care, and these funds will not replace his government benefits.
In addition, if you are currently his guardian, in your will you need to designate your choice for successor guardian. This is the person or persons who will take over the care responsibilities for your son. This is the tougher issue, but know that you can nominate who you choose, rather than let the courts appoint whoever shows up to take the job.
Finally, you should call the local case management agency. They can assist you in identifying residential options for your son’s future.
Q: I am the older brother of a 20-year-old sibling with a disability. My parents have always taken care of everything but don’t tell me anything about what they do. I am fearful that if something happens to them I’ll be responsible for my brother and won’t know what to do. Help!
A: I suggest you sit down with your parents and tell them how you feel. My guess is that they have the same concerns, but did not want to “burden” you with responsibilities that they see as theirs. They will probably feel some relief that you are concerned and are willing to educate yourself in regards to making sure that your sibling is OK. Make sure your parents have set up a Special Needs Trust for your sibling, and that they have designated a successor guardian/advocate for your brother in their wills.
Q: Our child with a disability has been on a waiting list for one of the residential facilities for more than 10 years and we are wondering when we will find out when he can move in. Who do we ask and what do we ask them?
A: You should contact the residential facility immediately. You might find that they have your child’s name but also you might find that the list is just “not real” or that it is so long that, in fact, it is “not real”. Contact your local case management agency immediately and start the process of having a caseworker assigned to your child to help identify some options. Also be proactive and visit the residential facilities. Find out what is out there. Get in front of the agencies, meet the management and personnel, and volunteer your time. Take the first step NOW!