When “Public Safety” Policy Affects People with Severe Autism: What Families Need to Know

By Jackie Kancir, NCSA Executive Director
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On July 24, the White House released an Executive Order titled “Ending Crime and Disorder on America’s Streets.” While its focus is on homelessness, mental illness, and public safety, many of the proposed actions could have serious — and (hopefully) unintended — consequences for individuals with severe autism and their families.

While acknowledging risk, there may also be potential for improvements in systems of support for our loved ones, too. If implemented wisely and with the right safeguards, this Executive Order (EO) could also offer a unique opportunity to fix what’s long been broken.

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What the EO Says — and Why It Matters to Us

The EO calls for:

• Expanded civil commitment laws for individuals who “cannot care for themselves” or “pose a danger to others”

• A shift away from Housing First models in favor of treatment-linked housing

• New federal grants to encourage states to enforce vagrancy laws and move people off the streets

• A review of HUD and HHS regulations to align them with “treatment-focused” approaches

That language might seem far removed from the lives of families caring for individuals with severe autism, intellectual disability, and severe behavior, but here’s the reality:

• Many of our loved ones can’t access group homes because of aggressive behavior, or when they do, they suffer traumatic abuse.

• HCBS waivers are often approved but unstaffed

• Emergency rooms have become holding cells when families are in crisis

• Police are sometimes the only available responders, and that’s dangerous

This Executive Order, for all its flaws, finally admits something NCSA has long said: that for some individuals, 24/7 structured care is medically necessary, and we have no system to provide it.

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Concerns

Here’s the risk: if these new powers are implemented broadly, without disability-specific safeguards, individuals with severe autism could be swept into punitive systems.

For example:

• A nonverbal adult pacing, screaming, or bolting in public could be perceived as “dangerous”

• A person exhibiting self-injury might be civilly committed under a psychiatric standard that doesn’t fit

• Guardians could lose legal decision-making power under vague definitions of “risk”

• Programs that center on law enforcement rather than care could criminalize behaviors rooted in neurological disability

We have to be clear: severe autism is not a crime. The aggressive or self-injurious behaviors some individuals exhibit are not acts of intent. There is no “mens rea” (no desire to harm). These are symptoms of pain, distress, and unmet need.

With proper supports — medical care, behavioral therapy, environmental adaptations — many can live safely and meaningfully in a variety of settings that meet their preferences, but they are currently being left behind.

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Potential Opening for Dialogue on Improved Systems

If we move quickly and effectively, this EO can be leveraged to:

• Advocate for Medicaid-funded residential models that match the complexity of severe autism

• Push CMS to revise the HCBS Settings Rule, which states use to block person-centered, autism-specific housing

• Establish disability-competent pathways for civil commitment that are therapeutic, not carceral

• Build capacity for purpose-built housing models that incorporate clinical and behavioral support

• Demand independent oversight and legal protections for those affected by any new policies

This isn’t about nostalgia for institutions. It’s about the right to build something better and the opportunity to do it now.

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What Families Can Do

1. Read my analysis: Click here to view my breakdown of the EO.

2. Read our Hill Briefing: Click here to view our message to Congress. Share this with your legislators!

3. Share your story with elected officials. Tell them how the system has failed your loved one, but also tell them what would work for your loved one instead. Be a source of support for your legislators in developing meaningful solutions.

4. Watch for action alerts from NCSA in the coming weeks. We’ll be submitting comments and proposals to key federal agencies.

5. Talk to local journalists. Help shift the narrative from “dangerous” to “unsupported.” Send letters to the editors of your local papers.

6. Strengthen Guardianship Protections.

   1. Encourage state legislation to modernize guardianship systems, ensuring both the empowerment of dedicated family guardians and robust accountability mechanisms to prevent misuse or neglect.

   2. Advocate for federal guidance that prevents emergency holds or civil commitments from overriding existing guardianship without due process.

You can download our Family Advocacy Toolkit to keep in front of you when speaking to legislators to help remember the key talking points. Share it on your social networks and help spread the word of how we can build a better future for our children. Find more policy document downloads here.

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Final Word

This Executive Order wasn’t written for our children, but it may finally give us a seat at the table. With coordinated, level-headed, well-informed, collaborative advocacy, we can ensure that “public safety” doesn’t become an excuse for surveillance, confinement, or neglect. It becomes an invitation to build real care.

Let’s use this moment to redefine what safe, appropriate, and person-centered really means.

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

• 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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