It is all well and good to be told, as a parent, you must be ready for when your child with a developmental disability is no longer in special ed full time. Yet, to me that time crept up in 2000. When my son with autism, now 31, was out of school I thought it would all be very easy. I was optimistic, sure that a local developmental disability related nonprofit (NPO) would agree to work with him since he had been at work sites starting at 14 by his school. I was unrealistic. I hope I can give other parents ideas on what to do and/or expect for supported work services, Social Security, Medicaid and Medicare for such children.
After I applied for him, the nearest NPO did not agree to give my son supported work services. Yet, I had done paperwork and two staff from his school attended the open house. Nothing prepared me for the setback. I again sought a willing agency so my son, with no meds, was productively occupied, ideally working with transportation. I got adult lifetime child support for my son so he had other income, though it lowered his SSI payments for years.
Doing paperwork, visiting job sites, meeting NPOs and coordinating it all with my other son took time. What I learned–and what you must know is–there is no guarantee that a preferred NPO will agree to provide services to a child after age 21 or that they have staff trained in the nature of a disability. I saw other providers before one finally agreed to work with my son.
Before a child is 21, you interview NPOs, see job sites and meet staff. It takes months: Not all providers have work, contracts, trained staff and transportation for a child with a developmental disability. Though you select an NPO, it must agree to work with a child. It is like a lottery. After an NPO agrees by phone and in writing to work with a child, things keep changing. After meeting with key staff, a new Individual Plan is written yearly for a child by a resource coordinator. You must be ready to explain it all to a child with a developmental disability while yearly considering what other services must go in the IP. Plus, experience of NPO staff varies, yet staff must attend a certain amount of training hours yearly.
While all occurs, a child’s SSI income (obtained once a child is 18 at the latest) goes up or down, depending on a child’s earned income. Make sure funds go by direct deposit. You may even need to start filing tax returns for a child once a child works. Once a child gets SSI, obtain a Medicaid card at the County Office of Social Services. All income of a child is reported in writing to a local Social Security Administration Office quarterly. Send original pay stubs, etc. SSA adjusts SSI up or down later.
After working for years, a child may be eligible for Social Security Disability Income benefits. Apply in person at a local SSA office as a child’s Rep Payee. A child can get SSI+SSDI. Once a child receives SSDI, a child is eligible for Medicare benefits, so obtain that card. Keep duplicate Medicaid/ Medicare cards. Once a child has both, Medicare is primary and Medicaid is secondary. However, not all medical, dental or mental health providers are in those plans.
If either parent of a child on SSI retires, the child gets SSA retirement benefits. There is no online form for it, but if a Social Security number of a retired parent is known, the Rep Payee applies for SSDI for a child in person at a local SSA office. When a child gets retirement funds by a parent retiring, SSI ends. If SSA overpays SSI funds, request the overpayment be paid back in installments of as little as $25 per month; i.e., less benefits per month. Also, if a parent gets Veterans Administration fund benefits, the child may get benefits, but I assume those benefits must also be reported to SSA.
As you can see, things start changing for a child at 18, 20 and more so at 21. It is important that parents keep aware of any and all of these income and medical-based changes. It is equally important that careful records be kept of all this. After all, SSA in particular will do so, too.