Excerpt from: Cracked Planet (click for full article)
Many veteran parents would say that the most difficult part of having a child with a disability is dealing with "the system". Developed in the 1950's in order to give workers who had work-related injuries temporary government support until they could get back on the job, the system of supports that now allows people with disabilities to live in their communities is an antiquated patchwork of funding streams and programs that actually PROHIBITS beneficiaries from working and saving. Social Security Income (SSI) is the gateway to this system of public supports. Medicaid is the delivery vehicle. It was never designed to support impoverished elderly people with dementia, poor single mothers, children with Autism and adults with developmental disabilities all in one program. Once a young adult like my son turns 21, he exits the youth system and must apply for SSI---a means-tested program with income and asset limits--which will force him into poverty for the rest of his life. When Julian was born and we updated our will, we actually had to disinherit him so that he wouldn't accumulate assets and jeopardize his adult Medicaid eligibility. He cannot have assets totaling more than $2,000 over his lifetime. He can't receive cash birthday or bar mitzvah gifts or inheritance from his loved ones. In the current system, he'll need Medicaid in order to be insured medically but he'll also need it to get housing, job coaching, and aides to help him live independently.
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