Californians are well aware of the shortage of affordable housing. Communities have proposed everything from raising minimum wage to micro housing.
People with intellectual and developmental disabilities (I/DD) are among those who need affordable housing—and they’re much less likely to find it.
Autism is one of the fastest growing developmental disorders in the nation. The latest count, completed last in December, shows the population of people with autism in California has surpassed the 100,000 mark.
People with autism are often sensitive to noise and have difficulty with social interaction, which can make it hard for them to find employment. While some do well in a community setting, many need additional supports, as Bay Area mother Feda Almaliti explains in her blog post, “Inclusion Sucks. Or, Why My Son with Severe Autism Has Nowhere to Swim this Summer.”
This is why a majority of people with I/DD live at home with a parent or guardian. Nationwide, more than 1 million people with I/DD are estimated to be living with an aging caregiver. But as this generation of caregivers continues to age, many of their adult children with I/DD may be at risk of institutionalization or homelessness due to the shortage of housing and services.
To help support people with I/DD, the federal government provides funding through Home and Community Based Services (HCBS). As the need continues to grow, so do the costs, and now the federal Centers for Medicare & Medicaid Services is working to tighten guidelines and restrict funds, which could force many people with disabilities out of their current homes. This includes the 90 residents of our 11-acre Spring Valley-based Affinity Choice Community at Noah Homes. Ten of these residents have happily lived there for more than 30 years.
According to the HCBS homepage, the funds provide opportunities for people “to receive services in their own home or community rather than institutions or other isolated settings.” While the guidelines “mean” well, they presume that living with a family member or in a community-based home is less isolating than a large, congregate setting such as Down Home Ranch in Texas or one of the 10 homes at Noah Homes.
I love to see people with disabilities do things like form healthy relationships with neighbors, keep good hygiene, regulate their diet and hold down jobs. I also know from decades of firsthand experience that there is an entire spectrum of needs and ability.
A lot of the time, those who need the most help are the most hidden from public view. Let me tell you about one of them. Nick, whose name has been changed, is 58 and has Down syndrome and dementia. Sometimes he hits, spits and yells. He can’t live with his sister because of how he interacts with her daughter. He would also hand house keys to a stranger.
So Nick lives at Noah Homes. We have over 100 staff members, 25 vehicles and a close working relationship with families, universities, volunteers, local policy makers and, most importantly, our residents. Do you really think an apartment in downtown Los Angeles is a better idea?
“We may cringe at the idea of institutionalization, but underneath that idea was at least the explicit acknowledgment that certain people with severe disabilities were unable to provide for themselves or care for themselves,” said Jill Escher, president of the Autism Society of the San Francisco Bay Area and the mom of two children with nonverbal autism.
“With the closure of institutions, nothing has risen in its place that acknowledges this hard, cold truth,” Escher said. “There is no free housing for adults with I/DD in California, except for group homes and those are so financially challenged they cannot stay in business.”
This is a humanitarian issue. While I agree with some of the basic thoughts around HCBS, I don’t think federal authorities are more knowledgeable about the unique needs and interests of adults with I/DD than their parents and others who supported them through childhood.
Right now, there are several privately funded building projects that are on hold because of the fear that HCBS would not fund individuals living there after they open. These are projects that would help combat the housing crisis and provide a quality lifelong home for some of those most in need.
Rather than increasing options and decreasing barriers to affordable housing, HCBS is threatening those already struggling to keep a roof over their heads. A group of advocates, including myself, have come together to form Together for Choice and share our thoughts on how to promote more housing choices, not fewer.
In short, we believe that people with I/DD should have the same human and civil rights to choose from the broadest range of home, workplace and communities supports and settings—whether that be an apartment, farm or even a Jimmy Buffet retirement community.
Molly Nocon is the CEO of Noah Homes, a nonprofit that provides housing and services for adults with intellectual and developmental disabilities.