NCSA Position Statement on Federal and State Housing Policies
Our nation is facing an acute and growing adult autism housing crisis, a problem that is particularly dire for adults with severe autism. Several factors have combined to lead to this urgent situation, including:
Unprecedented population. The population of adults with developmental disability-type autism has grown dramatically over the past decade. According to California developmental services data, its number of adults with autism (which excludes mild cases) is expected to nearly quintuple over the next 20 years.
Aging parents. The vast majority of autistic adults live at home with their parents. The inevitable aging and death of the autism parent generation is leaving an ever-increasing number of adults without supported housing.
Behaviors and vulnerability. Autism often involves behavioral challenges such as property destruction, loud vocalizations, aggression and self-injury. These behaviors render many adults “difficult to serve,” vulnerable to exclusion and eviction from community settings, and in need of specialized and well supervised options.
Closure of state-funded options. The dismantling of state institutions and other state-funded options such as intermediate care facilities (ICFs) has often occurred without creation of affordable community-based alternatives suitable and affordable for those with intensive support needs. Most adults with autism have incomes limited to social security payments, which seldom can cover the costs of standard housing, much less specialty housing.
Given the immense and growing need for appropriate and affordable housing, NCSA believes housing policies on all levels — federal, state, and local — should aim to remove barriers and unleash new options and capacity. To this end, we call for a system that incentivizes and supports a full continuum of residential options, including the following elements:
Intermediate Care Facilities for Developmental Disabilities (ICF-DDs) funded by Medicaid should be available in all states to meet the needs of those with severe behaviors and/or medical needs that cannot be met in community settings. While this entitlement exists on paper it is seldom available in reality. In addition, person-centered planning and choices should be respected in all settings, including ICF-DDs, allowing for community participation and self-determination as may be appropriate and desired by the individuals.
Medicaid Home and Community Based Services (HCBS) should fund support services in the broadest possible array of community settings, as driven by person-centered choices. These settings include generic community apartments, small group homes, large group homes, disability-friendly options, clustered developments, farm-oriented developments, or any other private setting of a sort that is available to non disabled persons and is desired and appropriate for the autistic adult. Increased funding is needed to shorten waitlists for HCBS waivers which today can be decades long in many states. See NCSA Position Statement on Medicaid/CMS.
Housing and Urban Development (HUD) programs, including housing choice vouchers and project-based vouchers, should be expressly prioritized to support housing for low-income adults with developmental disabilities, including severe forms of autism. In addition, legislation imposing a 25% ceiling on the number of persons with developmental disabilities per HUD-funded 811 projects is discriminatory and impractical. We call on Congress to remove this arbitrary limit which unjustly denies the developmentally disabled access to desperately needed housing.
Enhanced supports in the family home. Aging parents will need increased levels of support in order to keep their autistic adult children safe and cared for at home. State restrictions imposing limits on the amount of care available in the family home should be removed. Person-centered planning should drive family-proximate residential support decisions.
From exclusionary to inclusionary zoning and practices. State and local laws often impose high barriers to entry for developmental disability housing, including exclusionary zoning, use restrictions, burdensome conditions on development, and not-in-my-backyard veto power by neighbors. States should require all municipal housing plans to address the needs of those with autism and other DDs. State housing monies, including bonds and tax credits, should be prioritized for this population. Counties and municipalities can create special funds devoted to I/DD housing, require set-asides in new developments, loosen exclusionary zoning practices, and permit construction of accessory dwelling units.
Correct interpretation of Olmstead. Despite statements made by some disability advocates, there is no “integration mandate” in the ADA or Olmstead decision that legally reduces publicly funded residential options available to adults with autism. Indeed, Olmstead specifically states that for some individuals, the most integrated setting may be an “institution." Integration is a worthy, but not exclusive, goal and for adults with severe forms of autism, many other critical person-centered considerations also come into play. These include health, safety and supervision, comfort and companionship, sensory compatibility, and specialized onsite amenities.
Adopted by NCSA Board of Directors July 12, 2019
See all NCSA Position Statements: ncsautism.org/list-of-ncsa-position-statements