[Editor's note: This post is a follow-up to a November 2014 post about the writer's goals for creating a community for her son with autism.]
Over the past year I have done research, attended meetings, and spoken with parents in various stages of finding appropriate housing for their adult children. Here are some insights gleaned so far:
There are very limited options.
Many of the suitable options are private pay and require significant and often unaffordable investment by the families. Additionally, they are very few and far between.
Federal Medicaid policies are being misapplied to limit housing and program choices, particularly for those who need intensive supports. It is also an unfunded mandate that requires person-centered service planning, but does not pay for the high staffing ratios required to put that into effect. Medicaid rules may have been created with the best of intent, but are actually crippling parents’ ability to create and get funding for services in autism-friendly housing and communities, as Medicaid is now strangely favoring one-size-fits-all solutions at a time when we desperately need an expanding menu of options.
There are a wide range of needs due to varying degrees of function and behaviors. However, many supported living or day program services available are insufficient for a large part of the autism population. If your child falls outside of the “easy” group (i.e., if your child has difficult behaviors), it is difficult to find good placement where they can thrive and grow. Having a child with difficult behaviors often puts the parents and kids in crisis situations where no services exist to meet their specific needs.
Low wages paid to workers means staffing is often inadequate. Programs experience high turnover and lack of qualified applicants. Most service providers are massively underfunded and have to find outside funds to stay afloat, and parents do not have sufficient funds to bridge the gap. The result is that only a tiny fraction of the state's autism population lives outside the family home.
The preceding points are only the tip of the iceberg. What can we, as parents, do to change this daunting situation? While it is easiest to sit back and wait for others to mobilize (I have been guilty of this), we cannot afford to do so.
The starting point is education: education of the general public, as well as education of our local, state and federal politicians. In my case this entails emails to politicians as well as various autism advocacy groups, as specific needs of different geographical areas can vary greatly. Shameless plugs to family and friends and anyone else who is willing to listen also are being employed.
We cannot sit passively in the hopes that "they" will figure it out for our families. We all must mobilize to change our system.
The author is the mother of a young man with autism. She lives in the East Bay.