The celebration of independence that occurs when a child moves out of the house for the first time is a uniquely American phenomenon; our emphasis on independence and self-reliance makes living on one’s own a noble goal. We even poke fun and those who have trouble making the big step — anyone remember Failure to Launch? And yet, for some families — in particular those who have children with special needs — ‘launching’ can be a genuine ordeal.
If your child has an Autism Spectrum Disorder (ASD), for example, the struggle to coordinate the hunt for a suitable home with the support services necessary to allow them to live without your constant presence is complicated and stressful on many levels. Before we get into the current story, however, let’s take a look at how housing services and support has changed over the past half-century.
A Brief Timeline of Residential Support and Services
• Pre-1970s: While adults with developmental disabilities have been around presumably as long as the rest of the human race, their status before the Civil Rights movement was essentially ‘ignored.’ Local groups existed in some places, but most adults with disabilities lived with their parents or siblings or were placed in the same State-run system as any other orphan. Many adults with ASDs and little family support ended up in institutions alongside people with genuine psychiatric disorders.
• 1970s: On the tail end of the Civil Rights movement, a push to ‘humanize’ many of the nation’s institutionalized people led to the closing of many of those places. The government turned toward the idea of ‘community living,’ and started to establish systems that would allow adults with special needs to live near service providers… but it was slow to evolve.
• 1980s: States implemented a wider away of community-based services based on a ‘provider agency’ model. Provider agencies — non-profit groups that were largely started and organized by parents — contracted with the government to provide services and support for a specific community. A person with special needs would move into a community that offered the support they needed most.
• 1990s: A movement which arose in the 80s finally began to take root: family-based care. States began to implement programs that supported families willing to care for their own adults with special needs. This allowed them to stay at home (much like in the pre-70s), only with significant financial and operational support from the government.
• 2000s: The family-based care model was expanded with the introduction of Medicaid waivers that allowed private companies to access Federal funds if they provided care for adults with special needs. Because Medicaid money is controlled by State law, there was no one ubiquitous improvement, but in general, more money should have meant better
Today: As health care costs continue to skyrocket, State and Federal funding, while more plentiful than ever before, are rarely enough to keep up. Families attempting to find a first-time home for a newly-adult with special needs must line up a variety of source both public and private, often supplementing with their own money, to afford such a home. In fact, most State- and Federally-subsidized housing options for young adults with special needs have waiting lists between 3 and 15 years long. So even if you’re reading this and you’re still years away from looking to move out of your parent’s home, it can pay enormously to get started now!