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.)