The current housing crisis for adults with severe autism isn't just about availability – it's about survival. While we've made strides in supporting many individuals on the autism spectrum, we're failing those with the most complex needs: adults with severe autism who also face severe-profound intellectual disabilities, very low adaptive functioning, severe behavior symptoms, and co-occurring medical complications like seizures.
The Broken Promise of HCBS Group Homes
The Home and Community Based Services (HCBS) model was supposed to rescue individuals with disabilities from the horrors of Willowbrook. We called the movement “deinstitutionalization.” Institutionalization is the experience of being stripped of autonomy and choice. Contrary to popular propaganda, the demolition of state-run facilities did not stop the horrors of Willowbrook – it shuffled it to the more hidden recesses of small community living homes. The Office of Inspector General recently found that 99% of critical incidents of people with developmental disabilities living in group homes were not reported to law enforcement or state agencies, as required.
Instead, for many individuals with severe autism, it's become a dangerous mirage of proper care. Recent investigations in New Jersey have revealed widespread abuse in group homes, leading to urgent calls for reform. The truth is uncomfortable but clear: standard group home models are woefully inadequate for individuals with intense support needs, especially those who cannot identify their abusers to seek justice.
Why Traditional Models Fail
Traditional HCBS group homes were not designed for individuals who may require:
24/7 intensive supervision
Medical monitoring for complex co-occurring conditions
Crisis intervention for involuntary severe behavioral symptoms
Specialized environmental modifications
High staff-to-resident ratios
Most current autism housing models explicitly exclude those with severe behaviors, such as aggression, self-injury, and property damage – the very individuals who need specialized housing solutions the most.
Legislative Response: A Growing Recognition
States are beginning to acknowledge this crisis. In Kentucky, SB30 represents a significant step toward recognizing the full spectrum of needs within the disability community, while in New Jersey, Senator Vitale has introduced a comprehensive package of bills aimed at enhancing safety and oversight in group homes.
The Economic Case
Medicaid cuts are a reality that all nonprofits and advocates must accept are coming. Working with policymakers to reduce waste and develop more efficient systems will serve our community better than generalized tantrums refusing to accept any cuts at all. While specialized housing may seem expensive initially, the long-term cost benefits are compelling. Research shows that individuals with ASD incur average annual healthcare costs of $22,653 through Medicaid, with frequent hospitalizations and emergency interventions driving up these expenses. The lifetime societal cost of supporting an individual with autism can reach $3.2 million, with adult care being one of the largest components.
Specialized residential programs can help reduce these costs by:
Preventing costly crisis interventions and hospitalizations through proactive care
Reducing medication needs through better environmental and behavioral supports
Reducing quantity of medical and therapeutic visits by adopting an interdisciplinary co-treating model
Lowering staff turnover and training costs through specialized career paths and supported team environments
Minimizing property damage through appropriate environmental design
Decreasing family caregiver burden and associated lost productivity
Studies have consistently shown that individuals with autism have higher healthcare utilization and costs compared to the general population, but these costs can be significantly reduced through appropriate specialized care that prevents crises rather than simply responding to them. By investing in proper housing and support systems now, we can both improve outcomes and reduce long-term societal costs.
Solutions for the Future
Specialized Residential Models
We need to develop and fund new residential models specifically designed for individuals with severe autism. These should include:
Enhanced medical oversight
Specialized behavioral support teams
Purpose-built environments
Higher staffing ratios
Continuous training programs for staff
Organized medical and therapeutic activities focused on living, socialization, and motor skills development.
Legislative Reforms
Key policy changes should include:
National public registry of abuse against vulnerable persons searchable by facility, location, and staff
Enhanced staff training requirements to include licensure and certification for all staff working with individuals with severe autism
Tiered Direct Support Professional (DSP) labor codes guiding commensurate reimbursement rates that reflect the level of training and certification
Regular independent oversight of residential settings by panels of biopsychosocial experts and experienced family caregivers
Tax incentives for companies investing in specialized housing for individuals with severe autism
Tax incentives for companies investing in staff training specializing in severe autism
Tax incentives for Direct Support Professionals with specialized training in severe autism
Severe penalties for abuse and neglect
Medicaid Reform
The current HCBS waiver system needs restructuring to:
Create a specialized service category for severe autism structured around trauma-informed interdisciplinary holistic care with a person-centered biopsychosocial approach
Capitated rates defined specifically for a narrowly defined population that allow the flexibility of fluctuating interdisciplinary support needs, with transparent medical necessity appeal criteria for cap exceptions when needed
Weighted reimbursement rates to accurately reflect the higher acuity of individuals with severe autism so providers are fairly compensated
Support purpose-built housing development
Replace stifling settings regulations with person-centered metrics for developers to acquire approval for specialized housing projects
Quality Measures
We need new quality metrics that specifically address:
Medical care coordination
Behavioral support effectiveness
Staff retention and training
Family satisfaction
Individual outcomes
The Path Forward
The solution isn't rejecting deinstitutionalization, but it starts with realizing that, for individuals with severe autism, we have simply rebranded institutionalization. For them, the current atomized institutionalization of community living still propagates abuse, harm, neglect, segregation, and isolation. The path forward demands we create something better. We need a new category of specialized residential options that combines the least restrictive goals of HCBS with the intensive multidisciplinary supports these individuals require across the lifespan.
Research has shown that individuals with severe autism can thrive in appropriate residential settings, but only when those settings are properly designed and resourced for their needs.
Call to Action
It's time to:
Support legislation like Kentucky's SB30 and New Jersey's reform package
Advocate for Medicaid waiver reform
Fund pilot programs for specialized housing models
Demand better oversight and accountability
The current crisis in autism housing isn't just a policy failure – it's a moral one. We have the knowledge and capability to create better solutions. What we need now is the political will to make them reality.
For too long, families have been forced to choose between inadequate group homes and impossible at-home care situations. It's time to create a third option: specialized residential communities that truly meet the needs of our most vulnerable citizens with severe autism.
It’s time for true person-centered care. If it’s not person-centered, there’s a strong argument it is institutional, regardless of the shape, size, occupancy, or location of the building. Slapping an HCBS label on a program does not eradicate the experience of institutionalization. We need to do better.
Jackie Kancir is the Executive Director of the National Council on Severe Autism and Patient Advocacy Director for the SynGAP Research Fund. Drawing from her experience as a brain tumor survivor and mother to a daughter with severe autism and SynGAP1-rd, she transforms healthcare systems through evidence-based policy changes. Her efforts have significantly improved emergency care protocols for individuals with developmental disabilities nationwide.
