Providing for your child’s future

As parents of kids with serious disabilities, we worry. How will we afford treatment costs? What if our child cannot hold a steady job as an adult? How will he or she afford food, shelter, and medical care? If needed, will our child have access to supported housing and other services?

Federal disability aid can provide a measure of security, along with access to services that aren’t available to those with private insurance or piles of cash. This aid, called Supplemental Security Income (SSI), is a Social Security Administration (SSA) program that pays benefits to disabled children and adults with limited income and resources.

Seeking SSI on my daughter’s behalf was one of the wisest things I have ever done. SSI has given my daughter, now 21, a modest monthly income and access to services that do not accept any other form of payment. SSI also qualified my daughter for Medicaid, which pays for all hospitalization and medication costs not covered by our family health insurance.

To qualify for SSI, a child must have chronic “physical or mental condition(s) that very seriously limits his or her activities.” If your child is over 18, the condition must make it unlikely that he or she can be self-supporting. In most states, those who get SSI benefits also can qualify for Medicaid medical assistance. Even if your child does not qualify for SSI, he or she may be able to get Medicaid. Your state Medicaid agency, Social Security office or state or county social services office can give you more information.

Bipolar disorder and other severely impairing mental disabilities can qualify a child or adult for SSI, which currently pays a monthly benefit of $674 for basic food, shelter and clothing costs for anyone who qualifies, in any state. If a child is under 18 and lives at home, family income and assets figure in eligibility calculations. In addition, the disabled child or adult cannot own stock, cash, bonds, etc., worth $2,000 or more. If the child is 18 or older or resides at a residential treatment center, family income is not considered.

We used an attorney to file a SSI application, but you can file online yourself or use the free assistance of a SSA claims representative. If you use an attorney, be sure to ask if he or she has experience with SSI. Attorneys may be entitled to receive 25 percent of retroactive SSI benefits if the application is approved. We signed a contingent fee agreement, which meant that our attorney would not collect any fee if the application were unsuccessful. Our total legal expense, deducted from my daughter’s first SSI check, was $600.

Mental illness is costly—sometimes crushing—for families. When my daughter was first diagnosed with bipolar disorder, she was excluded from our health insurance because of this “pre-existing condition” for two years. During this time, her treatment, medication and hospitalization costs exceeded $100,000.

Today, all of her medication costs are paid through Medicaid. When she was hospitalized recently, 100 percent of the costs were covered by our insurance and Medicaid. When she was discharged from the hospital, she was not ready to live independently. With guidance from the hospital, we found an Intermediate Care Facility (IFC) that offers private rooms, medication oversight, art therapy and other programming for adults with mental illness. Disability aid covers all costs for this 220-room group home, which is located in a safe Chicago neighborhood, and only accepts residents with SSI and Medicaid.

Now, as we plan our daughter’s return to an apartment, she qualifies for case management and twice-weekly visits by a local mental health agency which, you guessed it, only accepts clients with SSI and Medicaid. This support can help my daughter stay out of the hospital and allow me to be her mom, not her case manager.

Like I said, I worry. One of the things I worried about was the quality of care that my daughter might receive from providers that only accept publicly funded clients. So I checked them out in person and through online research, including newspaper archives.

I toured the group home and met with the executive director and clinical director before my daughter moved in. I was very impressed with their knowledge and years of experience, their willingness to take the time to answer all of my questions, and the quality of programming offered to residents. As I toured the building with the executive director, I watched her greet residents warmly and by name.

I also met in advance with the agency case manager who will visit my daughter in her apartment to watch for signs of creeping illness, help her grocery shop and budget, and even take her out for coffee if she begins to isolate herself. The case manager has already met with my daughter 3 times to learn her needs and preferences and build a relationship. She is smart, energetic and, as my daughter says, “really cool.”

Ironically, my daughter could not receive these high-quality services if not for SSI and Medicaid. As state and local funding has been cut to providers everywhere, programs that serve federally funded clients are now among the most reliable and financially secure.

These benefits provide priceless peace of mind. As the Social Security website states, if you think your disabled child qualifies for SSI, you should apply. This assistance can make a huge difference for your child and family now and in the future.

(Social Security Administration qualification guidelines for a bipolar diagnosis can be found at: http://www.ssdrc.com/bipolar-disorder.html. A very detailed list of illnesses and disabilities covered by SSI is available on-line at www.ssa.gov. Go to this site, type “Blue Book” in the search field, and then look up disability coverage. You can also call the Social Security Administration toll-free at 800-772-1213 between 7 a.m. and 7 p.m. Monday-Friday.)

Flag

is my worst nightmare. That I would send my boy out in the world without the tools to succeed. I don't know for sure, but all we can do is our best and trusted God would do to rest. Like I said, it scares me to think what our children will have to deal with, just to get by, because it's not easy for anyone, and it seems to be getting harder and put myself. I'm getting older and financially by the time I get through educating them, there will be much left. I have a pension, but I can't pass that on my children so I guess like I said, just to trust God and do all you can to give them the tools to do it on their own. I wish I could say or do something to make it better or easier but that's all I have I wish it was more.

Paul Marioni
, Southeastern.
Pennsylvania on the Delaware line.

Flag

I don't know how a foster care situation might effect eligibility for SSI or Medicaid. You should contact your state's Medicaid agency, Social Security office or state or county social services office for more information.
Good luck --
Jean
--

Jean Meister

Flag

My son doesn't normally qualify for Medicaid but the CHIP program & no SSI due to my income, but he is in treatment foster care. Would that change this status at all? I am more intested in the medicaid for the treatment foster parents where he resides. He lives there 24/7.
--

SMacLeod :)

Flag

I as well applied for my son who is 9, and has bipolar disorder, and it was a very long process, being his age, and how hard it is to even have anyone diagnose anything at all anymore, because they are so scared of labeling, I had a wicked fight on my hands for 18 months! But when medicaid cut him off because I over incomed by less than 30 dollars, and his prescriptions were 1700 a month, I went through a trying period of using inexpensive medicines that didnt do a thing, getting ahold of drug companies for help, getting called at work and having to pick him up from school, because he was out of control, I was at my wits end! I applied for SSI just for the medical, I didnt care about the check! we got denied 3 times, got a lawyer after the first denial, and 18 months after I applied, found myself in front of the judge trying to explain what was happening in my little world, I was nervous and angry, because right before the hearing, the lawyer told me she didnt think we were going to win the case, at that point, I had fought for 18 months, I was not about to give up now, and was angry she ever said that, but bit my tongue, appeared in front of the judge, and put my feet in my 9 year olds shoes, anwsered all of his questions, without getting lengthy with them, and because my husband and I took parenting classes to try to learn some of the ways we could try to deal with some of these behaviours, and the teacher had written a letter of the many different stages in her classroom, he could see I really needed some help, and he had also met all of the criteria needed by SSI. I know I have future reviews, but you have no idea what kind of stress has been lifted off me! I now have him in full time therapy, he is soon getting developmental disibility testing, for a possible IEP, and I am able to breathe again, knowing he has some help, and am now applying again for SSI, for my 7 year old who has Aspergers Autism, who has just recently been taken off of medicaid. But I know already what kind of fight I am in for, and this time wont be surprised by all the negativity, I only hope in 2012, when the new bipolar child book comes out, alot of political people will see that bipolar disorder does not just hit you at age 10 and up, and though I do realize there are other disorders that mimic, have similar symptoms and may go along with bipolar, maybe instead of worrying about cutting budgets, and making everyone buy healthcare we cant afford, they should throw some money into more research on these conditions that are affecting our future generations, and human relation classes, for some of the persons we have to deal with when we have children with special needs!
rhonda 43, in Fayetteville NC
mom to Alex 22- bipolar disorder, Jacqui-20-bipolar disorder, Chris 18- ADHD, David-9-bipolar disorder, ADHD- vyvanse 60mg, depakote, 350mg, Michael-7-Aspergers, 18mg Straterra, and Nate-3- "at risk"

Flag

I know of children who receive SSI cash benefits while in residential care. The benefits are paid directly to the residential school, or to the parents who are required to forward payment to the school because the school provides food and shelter. The child is due $30 per month spending money out of the benefit. Medicaid covers psychiatric and other medical services, and this an important aid to these families while their child is in residential care.

I am not a lawyer, and these fine points demonstrate why it is important to seek expert advice--from an attorney or the SSA information line--to get the right answers in your individual situation.

Best,
Jean

--

Jean Meister

Flag

Please be aware that, although still eligible for Medicaid while in residential treatment, your child is not eligible to receive cash benefits while in residential treatment. During that time, you will not receive an SSI check.

When your child passes 18, he/she can still receive an SSI check while living with you even though you make more money than is allowed when that child is under 18.

--

Sharon O

Flag

Hi, Shelle --

If your daughter does not live with you, and instead lives at a residential school, your family income and assets do not figure in SSI calculations. However, if she returns home before age 18, that would change. When I met with a SSI representative, I was asked if my daughter lived at school or at home. I told the rep that my daughter lived at school and sometimes visited home on weekends. This established that her residence was the RTC.

You can also call the SSA with any questions at 800-772-1213. I have used this free service!

Best wishes,
Jean

--

Jean Meister

Flag

So, if I understand this correctly: " If a child is under 18 and lives at home, family income and assets figure in eligibility calculations. In addition, the disabled child or adult cannot own stock, cash, bonds, etc., worth $2,000 or more. If the child is 18 or older or resides at a residential treatment center, family income is not considered"

Does this mean that if my daughter (12) is attending a non-public school in a residential setting, my income is not counted?

Thanks,

--

Shelle, 49 in So Cal
Mom to Rachel, 12 - ADHD, BP, anxiety - Lamictal 100mg+Seroquel 25mg am/50mg pm, modified schedule in public school
we also have Birdie, the love bird - she bites; and Cherry, the little baby kitten

NEED HELP?

Join a cyber family of caring and supportive parents. We have a variety of groups designed to meet your needs. Click here to see a list of our online support communities. 

Contact our Family Helpline if you need information and resources specific to your family’s situation and can’t find what you're looking for on our site.