One of my "real" jobs when I'm not volunteering at SFASA is providing ultra low-income housing to adults with developmental disabilities. It's a mom-and-pop operation, we currently house seven tenants with developmental disabilities and several others with other mental and physical disabilities, all in standard community apartments. Most of these tenants can pay only about $300 monthly rent, drawn from their monthly Social Security checks. We can house people with serious disabilities only because government programs have provided an additional subsidy, and because we purchased property before it zoomed to about $500,000 per unit. Today, it's cost-prohibitive to even think of replicating our model.
I get several emails and calls each week from people who know about our work, and are desperately seeking affordable housing for their autistic and developmentally disabled loved ones. They can't find housing anywhere and even if they are fortunate enough to be regional center clients, case workers are basically telling them, "Sorry, we have nothing to offer."
Let's be perfectly clear. Autism housing is almost impossible to create. And due to the combination of skyrocketing costs and dastardly dumdum government policies, it's only getting harder.
With rare exception, programs such as the Section 8 subsidies used to supplement our disabled tenants' rents have dried up. Without those subsidies, and barring the existence of an amply funded special needs trust, an autistic and disabled adult's chance of living independently (with needed supports, of course) is basically nil. Monthly rents for two-bedroom units in our South Bay region have skyrocketed to about $2,400/month, and much higher as you move up the peninsula and to San Francisco. The proposition of housing adults with developmental disabilities, who have no capacity to earn a living or care for themselves, and can pony up maybe $300, instead of $2,400 per month, is a cruel, inhumane joke.
We may high-five ourselves for closing institutions, but we should be collectively ashamed at our abject failure to create viable housing options for DD adults in our communities.
And it's getting harder. In spite of the odds against them, many nonprofits and families are engaging in heroic efforts to create workable, safe, affordable residential projects intended to address the intensive lifespan needs of DD adults. Too often their vital work is being shot down, henpecked, and attacked by government officials and paid disability advocates. They whine that new projects, already already beset by massive financial hurdles, neighborhood opposition, and excruciating logistical and licensing requirements, "don't have enough nondisabled people" or aren't sufficiently "integrated" in the community for whatever nonsense reason like having a gate or special amenities like pools or community rooms, or gasp, onsite staff. They seem to say all autistic adults should live apart from one another, in scattered site apartments, isolated with lonely and exhausted aides, rather than in arrangements specifically tailored to their often intensive social, behavioral, and functional needs.
It seems this vendetta against the creation of new special needs housing is deliberate: a cost-savings crusade disguised as a civil rights march. The federal Centers for Medicaid Services (CMS), which subsidizes state-funded programs for developmentally disabled adults, knows the growing autism numbers and fears adults will be costly to support outside the family house. CMS wants to rein in costs, and their weapon of choice is clamping down on viable out-of-home placements through a vague terror threat to dismantle "congregate" settings. (Learn more about it in my recent blog post, "The Federal Government's Quiet War Against Adults with Autism.")
Exactly. As I said, as a special needs landlord I can attest to the near-impossibility under current circumstances of creating new housing for our dependent adults, particularly in our uber-costly Bay Area. Now CMS is piling on the obstacles— all at a time when we should instead be passionately devoted to a flourishing of accessible, affordable lifespan options for this unprecedented population of vulnerable disabled adults.
It will take massive shifts in policy to properly address this injustice and provide the wide variety of housing and program options so obviously needed. I would love to provide more special needs housing. But costs are insane, subsidies are scant, and government policy strangles innovation and scares off the very people who really want to help. It's a toxic combination.
"There are more than a million children in America with autism, and three million more with intellectual disorders and IQs lower than 70. Many, if not all, of their mothers and fathers are kept awake nights by two worries: How can I give my child a life worth having, and where will she/he live when I’m dead? There is no peace for us till we’ve settled those questions, not an inch of separation from the gnawing dread that we’ll leave them alone and undefended."