By Jill Escher
Ten years ago, when I started giving presentations about housing options for adults disabled by autism, my characterization of U.S. policy on this most urgent matter boiled down to one phrase, it’s “Autism Housing for Rich People Only.” I said this because adults with autism whose income was limited to Supplemental Security (about $900/month) could not afford rent anywhere in our region, because it was nearly impossible to obtain rental subsidies, sometimes called Section 8, from the local Housing Authorities, and because California was failing to produce more licensed homes even as it shuttered developmental centers.
But in these talks I would express some hope that considering everyone recognized the tidal wave of disabled autistic adults, within a decade we should see a shift toward a more rational and fair system, a system that allows for an array of viable and affordable options for ASD adults incapable of earning a living and caring for themselves.
Now that we’ve time-traveled to this point, I can only say that, instead, things have become worse, much worse, with many factors conspiring to move the autism housing crisis from downright terrible to an absolute nightmare.
Housing costs are soaring, with rents and home prices more than doubling in my area. Concerns about freakishly bizarre Medicaid rules beloved by “disability advocates” stunt desperately needed cost-effective development for people with I/DD receiving HCBS waivers. The federal Department of Housing and Urban Development (HUD), which ostensibly provides needed subsidies, suffers a history of outright discrimination against I/DD-focused developments. Intermediate Care Facilities (ICF) continue to decline in number. The uber-ideological federal Administration for Community Living has turned its back on severe autism, lavishing its attention on the needs of the high functioning sector. Many local resources have diverted to the mentally ill and addicted homeless. And all the while the population of young adults disabled by autism continues to escalate, living with ever-older parents hobbled by ever-more ailments.
The result? An intensifying of our repugnant national policy of Autism Housing for Rich People Only.
So what can we do about it? I think we can make progress toward sensible, equitable housing opportunities for our severely disabled and vulnerable autistic adults, no matter what their family income, via the following:
As a threshold matter, prominent voices in the autism advocacy community must stop mythologizing autism as a mere “difference” to be “celebrated” and instead act like grown-ups and speak truth to power about the dire lifespan needs of this often devastatingly disabled population. Certain organizations sow complacency exactly at a time we should be stoking flames of urgency. Further, we must boost recognition that severe autism should not be lumped in with every other disability category when it comes to housing — these individuals often need indoor space, outdoor space, staff areas, security elements, materials and amenities absent in almost all generic “low-income” housing.
Second, we need HUD programs devoted to prioritizing housing subsidies for the autistic and I/DD, without arbitrary restrictions (such as limiting any new development to a maximum of 25% with I/DD), and without lumping the severely autistic in with every other low-income contingent. Too often new Section 8 vouchers for I/DD are restricted to those exiting institutions, and precious few adults with autism reside in institutions — in California it’s less than .05%. Thousands of HUD vouchers go unclaimed, which is absurd given the desperate need.
As a landlord who over the years has served many tenants with autism and I/DD, including several with severe autism, I can attest to the power of Section 8 vouchers, which cover rental costs over the tenant’s contribution of 1/3 of the tenant’s income (which is usually about $900 in SSI, so the tenant pays only about $300 of the total rent). These tenants are all extremely low-income and able to break through the national policy of Autism Housing for Rich People Only via the wonders of Section 8 subsidies. But they are the lucky ones, as most ostensibly eligible adults with autism in our area don’t stand a chance to obtain vouchers anytime soon.
Third, we must stop the madness about the Centers for Medicare and Medicaid Services (CMS) Home and Community Based Services (HCBS) “Settings Rule,” which has created a culture of fear among those striving to create disability housing. People are reluctant to create new housing opportunities if there is a chance that a state Medicaid agency will withhold services and supports based on arbitrary litmus tests around size and character of the buildings, or the presence of disabilities among the other inhabitants. Disability activists’ zeal for a one-size-fits-all type of setting has effectively resulted in the de-funding of viable and affordable housing options. And of course, we need more HCBS vouchers available to our population, paying rates that attract and retain competent service providers.
While certainly there are other mechanisms to expand housing options, from a more robust approach to Intermediate Care Facilities (ICFs), to more family-oriented solutions such as legacy homes and accessory dwelling units, substantial changes at HUD and CMS federal level could go a long way toward the policy we need: Autism Housing for All Adults Disabled by Autism, Period. I realize this is all easier said than done, but it’s a conversation we must be having at the federal level if we are ever to address this mounting crisis.
Jill Escher is President of the National Council on Severe Autism.
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