The Housing Crisis We're Not Talking About: Serving Adults with Severe Autism

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.

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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.

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Letter: Request to withdraw DHHS’s designation of April as “Autism Acceptance Month”

Xavier Becerra
Secretary, Department of Health and Human Services 
secretary@hhs.gov

Monica Bertagnolli, MD
Director, National Institutes of Health 
monica.bertagnolli@nih.hhs.gov

Shelli Avenevoli, Ph.D 
Acting Director, National Institute for Mental Health 
shelli.avenevoli@nih.hhs.gov

Mandy Cohen, MD, MPH
Director, Centers for Disease Control and Prevention 
jb7@cdc.gov

September 13, 2024

Re: Request to withdraw DHHS’s designation of April as “Autism Acceptance Month” for 2025

Dear Secretary Becerra, Director Bertagnolli, Acting Director Avenevoli, and Director Cohen:

This past spring, at the prodding of a corner of the autism community, President Biden signed a proclamation designating April 2, 2024 as "Autism Acceptance Day.” This was a controversial move, since a large portion of the autism community preferred its previous incarnation as the more neutral “Autism Awareness Day,” and find the “acceptance” movement a threat to scientific and social advancement regarding this increasingly prevalent, and often severely disabling, neurodevelopmental disorder. 

However, our community was even more dismayed to see, without any public notice or opportunity for comment, Department of Health and Human Services agencies including the National Institute of Mental Health, National Institute of Environmental Health Sciences, the Administration for Community Living and Centers for Disease Control all greatly exceed the executive action to designate all of April 2024 as “Autism Acceptance Month." 

As a consequence of this DHHS action we saw the federal government devote an entire month to announcements and events that took a decidedly trivializing and flippant approach to autism while systematically sidelining the grim and difficult realities of autism — and especially severe and profound autism. While the DHHS action may have appeased some in the autism community, the move simply did not align with priorities and values of a vast swath of autism families, many of whom suffer crises across many fronts, including cognitive deficits, challenging behaviors, financial distress, lack of treatment, lack of social services, and scant long-term care options.

We learned the quiet move from “Awareness” to “Acceptance” was prompted by the Office of National Autism Coordination on behalf of DHHS without any public input or process. The Director of External Affairs for ACL approved the change. ONAC thereafter directed DHHS agencies to “update any event titles, documents, blogs, shareables, newsletters, or other communications from your agency that mention the month.”

Predictably, as a consequence of this directive issued unbeknownst to the autism community, we witnessed a stream of federal messaging and actions that reinforced neurodiversity ideology at the expense the urgent issues that don’t fit the “acceptance” narrative such as cognitive dysfunction, aggression, self-injury, property destruction, elopement, pica or the crisis around treatment and long-term care. For some reason, autism was the only neuropsychiatric infirmity meriting a federal acceptance month — we have not seen, for example, a “Schizophrenia Acceptance Month,” or “Major Depression Acceptance Month.”

DHHS’ adoption of “Autism Acceptance Month” not only vastly exceeded the President’s modest action regarding Autism Acceptance Day, its month-long messaging ran counter to public priorities. We therefore ask DHHS to take action to ensure that April reverts to “Autism Awareness Month,” a theme that at least retains some modicum of national urgency over national complacency. However, if the Department chooses to continue to embrace Autism Acceptance Month, we ask that it be followed in the month of May by a "Profound Autism Month” to allow for a more balanced approach, featuring images, speakers and content relevant to the growing crisis around severe and profound autism.

National Council on Severe Autism (ncsautism.org) respectfully requests an online meeting with appropriate point persons to discuss the above and best next steps to ensure an open process throughout HHS and the specific needs of the severe and profound autism community. Please reach out to NCSA’s President Jill Escher at jill.escher@gmail.com.

We look forward to hearing from you and thank you for your kind consideration.

Very truly yours,

Jill Escher
President

Amy Lutz
Vice President

Jacquelyne Kancir
Executive Director

Cc: Dr. Susan Daniels, Office of National Autism Coordination