If our federal programs cannot stretch to include those who will never be independent, then we must admit that “inclusion” has become just another form of discrimination. For families like mine, and for thousands of others across this country, that exclusion is not theoretical. It is lived, painful, and urgent.
Read moreADA at 35 (1990-2025): Recommitting to Equity for People with Severe Autism
Most policies are born through good faith, but without direct experience informing those policies, people with severe autism are suffering the negative impacts of unintended consequences. It is long past time to challenge the tired false binaries that dominate our disability discourse: community vs. institution, autonomy vs. guardianship, employment vs. dependency. These are not helpful when they erase nuance and deny the reality that many need 24/7 specialized support, meaningful daily activity, integrated multidisciplinary healthcare, and purpose-built safe housing options.
We must update our definitions of inclusion to account for choice, dignity, safety, and realism.
Read moreWhen “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.
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.
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.
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.
What Families Can Do
Read my analysis: Click here to view my breakdown of the EO.
Read our Hill Briefing: Click here to view our message to Congress. Share this with your legislators!
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.
Watch for action alerts from NCSA in the coming weeks. We’ll be submitting comments and proposals to key federal agencies.
Talk to local journalists. Help shift the narrative from “dangerous” to “unsupported.” Send letters to the editors of your local papers.
Strengthen Guardianship Protections.
Encourage state legislation to modernize guardianship systems, ensuring both the empowerment of dedicated family guardians and robust accountability mechanisms to prevent misuse or neglect.
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.
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.
Preventable Tragedies, Systemic Barriers: Severe Autism and the Health Disparity Crisis in Tennessee
As Tennessee’s Chattanooga neglect case sparks debate, families of people with severe autism highlight a deeper crisis: denied safety equipment, untrained staff, punitive policies, and systemic failures that create dangerous, nationwide disparities in care and disability rights.
Read moreHolding Group Homes Accountable: Legal and Policy Failures Exposed — And How the New Jersey Chapter of NCSA Is Leading the Fight
A newly released report from the New Jersey Ombudsman exposes systemic failures in group home oversight, including concealed abuse, unreported critical incidents, underpaid and understaffed care, and investigations that let providers police themselves. These aren’t isolated lapses but signs of a broken system that leaves families in crisis. The New Jersey Chapter of NCSA is responding with strong advocacy—documenting family experiences, demanding transparency, partnering with legislators and journalists, and pushing for meaningful reforms to protect individuals with severe autism.
Read moreWhat the Latest Version of the House Medicaid Reform Plan Means for Families Affected by Severe Autism
Sunday night, House Republicans dropped their latest plan for Medicaid reform, and it’s got a lot of people asking: Should we be worried? Should we panic? And what should we be doing? Here’s what you need to know—without the spin.
Read moreFish, Chickens, and the Folly of Sameness
My daughter shares about as much in common with a Mensa-level PhD candidate as a fish does with a chicken. Nobody’s handing chickens supreme authority to make decisions for fish just because chickens can bawk while fish cannot.
Society never claims that if only fish grew up in chicken-designed “animal-affirming” environments, they’d suddenly take up roosting and learn to crow at sunrise. There’s no assumption that every fish thrives in the same tank conditions, either. Some need fresh water. Others need salt. Certain fish want solitude, others survive best in schools. The important point: experts don’t consult chickens when they want to understand fish. They study the fish themselves. Wild concept, right?
Read moreThe Productivity Trap: How Well-Meaning Disability Advocacy Can Reinforce Eugenic Logic
The fundamental flaw in this approach is not that we celebrate independence—it's that we've allowed independence to become a prerequisite for human dignity. The true antidote to eugenic thinking isn't proving that disabled people can be productive; it's rejecting productivity as a measure of human value altogether.
Read moreOfficial Statement from the National Council on Severe Autism (NCSA)
NCSA maintains that:
Severe autism requires special attention and services distinct from other forms of autism
We face an urgent need for innovation in treatment and support across the lifespan
Research into environmental contributors and other potential causes must be pursued through rigorous scientific channels
Policy reforms must address the complex realities of continuous care requirements
Families and caregivers need expanded access to housing, healthcare, and support services
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.
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.