The United States is on the verge of a housing crisis as more than 800,000 children identified with ASD enter adulthood, including an estimated 500,000 by 2020. Residential, employment and social services and settings already lag demand so severely that this new generation of special needs Americans threatens to overwhelm public and private resources. The problem is worsening as the prevalence of ASD is 1 in 88 children (1 in 54 boys) and is “a continuing urgent public health concern” according to the U.S. Centers for Disease Control and Prevention.
As of 2010, an estimated 115,089 Medicaid-eligible intellectually and developmentally-disabled persons are on waiting lists for residential services. This is an increase of more than 60% over the 71,922 people on the same waiting lists in 2000, the first year after the Supreme Court Olmstead decision.
Residential settings provided by state and non-state agencies have grown significantly in the last 30 years, but not fast enough to meet the demand of the last 10 years, much less the next 20 years. It is estimated that 70-85 percent of adults with ASD live with their parents or a family member until they can no longer support them. At that point, the most common recourse for these adults is emergency placement in nursing homes, group homes, or supported/assisted living arrangements.
Tragically, even in situations where funding is available and providers want to add capacity, group homes and other settings are met with NIMBY (“not in my backyard”) resistance from neighbors who argue against them in planning hearings and complain to police and other authorities about noise and transportation.
Unemployment among ASD adults exceeds 90 percent and the average salary for employed adults averages $4,824 annually. Most jobs are low-skill/low-pay positions, and may be part of programs paying sub-minimum wage (e.g. FLSA 14c). Many ASD adults want to work full- or part- time and can hold jobs given proper supports, but state
vocational rehabilitation programs are underfunded and overwhelmed.
Social-recreational opportunities are severely limited by transportation, program availability, staff availability, hours of operation, and funding.
Overlooked is the unintended isolation and segregation that exists today for tens of thousands of ASD adults who are trapped in their parents’ homes with nothing to do because of a lack of housing, employment and social-recreational choices, and the funds to pay for them.
Medicaid Safety Net Failing
Medicaid is the primary funding safety net for hundreds of thousands of persons with
disabilities. To be clear, under the HCBS waiver Medicaid pays only for services, not room and board. However, Medicaid requires those services be provided in a Medicaid-approved setting.
The federal program does not provide 100 percent of the funding. States typically bear a matching load for room, board and specialized services, and may adjust placement rates based on available funds. Even in boom economic years, states have not had enough
funding to meet the demand and the result is extensive waiting lists, low staff pay and turnover greater than 50% annually (almost 100% in Nevada).
The average wage for direct service staff in a group home is $8.50-9.50 an hour. Put another way, the trained and licensed staff providing daily life care for adults with ASD get paid about the same as a high school graduate working as a barista in Starbucks.
It gets worse. Since 2009, the Centers for Medicare & Medicaid Services (CMS) has been trying to change the regulations to more narrowly define what constitutes a “home and
community-based” setting where waiver participants may receive services. At stake is nothing less than the future of essential residential and supportive services for hundreds of thousands of adults with ASD as well as adults with intellectual and developmental
If CMS is successful at narrowing the type of setting it considers “home and community-based” (i.e. “eligible”), fewer settings will be eligible as places to receive Medicaid-paid services, and existing Medicaid clients will be forced to seek new settings or lose services. It is estimated that as many as 25 percent of existing eligible residential settings would no longer meet the proposed new CMS criteria, and would force tens of thousands of disabled individuals out of their residences.