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Caroline Pierce, a Kentucky adult with profound autism, was forced to move from a campus-based home where she was thriving into a group home. Since joining the state’s group home system, she’s sustained 134 unexplained injuries — including bruises, scratches and a black eye, said her mother, Ann Jeanette Pierce, in a Jan. 14 video.
In Pennsylvania, Matt and Dan Guerrisi — adult twin brothers with profound autism — were forced to move from a residential farmstead for youth with intellectual and developmental disabilities, where they were happy, to group homes where they destroyed property and hurt themselves and others — actions that led to multiple police calls and emergency room visits.
Dan bashed his head so forcefully and often that doctors worried he had given himself a concussion, the Philadelphia Citizen reported. Meanwhile, staff injuries included brain damage, broken bones and bites that required more than 20 stitches.
Caroline, Matt and Dan’s experiences stem largely from the fact that Kentucky and Pennsylvania severely limit the types of housing eligible for reimbursement under Medicaid Home & Community Based Services (HCBS) waivers, according to Ashley Kim Weiss, executive director of Together for Choice.
Many families rely on HCBS waivers to help pay for housing services for their adult child with autism, Weiss explained. But it’s nearly impossible for adults with autism in these states to use Medicaid waivers for alternative living communities, farmsteads, assisted living communities, or neighborhoods designed for people with intellectual and developmental disabilities.
The result is that adults with profound autism are pushed into group homes that may not be well suited to care for them and handle their unique needs, Weiss said.
Supply not keeping up with demand for housing for adults with autism
Dr. Sylvia Fogel, chair of the Interagency Autism Coordinating Committee (IACC), told The Defender that the federal committee is working to address the issue.
The IACC advises the federal government on autism-related issues. In January, U.S. Health Secretary Robert F. Kennedy Jr. appointed 21 new IACC members.
Fogel is an assistant in psychiatry at Massachusetts General Hospital, an instructor at Harvard Medical School and the mother of an 18-year-old son with profound autism.
Regarding the need to expand quality housing options for adults with profound autism, she said, “We really want to make some headway here. There’s a lot of momentum — all of us realize that this is an issue.”
Adults with profound autism have unique housing needs, and supply isn’t keeping up with the increasing demand, Fogel said. “There aren’t enough choices or models of care,” she said.
‘We can measure community differently’
Part of the problem stems from how states like Kentucky and Pennsylvania interpret a Centers for Medicare & Medicaid Services (CMS) rule, finalized in 2014, that governs eligibility for HCBS funding waivers, Fogel said.
The rule sounds good on paper, Weiss said. It talks about ensuring that people with intellectual and developmental disabilities are integrated into the broader community, rather than segregated or isolated in institutions for the mentally ill.
“We do believe in the spirit of the settings rule, but the result has really hurt a lot of people,” she said.
The rule spells out specific settings whose physical locations are deemed too institutional, isolating or segregated — in other words, not community-integrated — to receive HCBS waiver funding.
The problem is that under the rule, some settings that really work for adults with profound autism are categorized as segregated or isolating.
For instance, Kentucky determined that Caroline’s former home, where she had been happy, was ineligible for Medicaid waiver funding because it was physically adjacent to an institution that served people with intellectual and developmental disabilities.
Caroline’s mother said:
“The HCBS settings final rule is supposed to protect the rights of people with disabilities by ensuring they live in community-based inclusive settings. But in practice, it has done the opposite. It has uprooted individuals from the places they call home, often against their will or without their understanding.”
Caroline, now 35 years old, was recently moved to a new group home in Louisville after being evicted by her previous provider, Weiss said. But the new group home isn’t working out.
“Caroline’s mother is now putting her house on the market to move to Lexington, where she plans to live with Caroline and arrange for 16 hours of daily personal assistance,” Weiss said.
The IACC’s 2026-2028 draft strategic plan asks CMS to formally clarify that community integration can be measured in other ways, not just on the basis of physical location.
“We can measure community differently,” Fogel said. Residents’ outcomes — including the quality of their experiences and how well they feel they are known — can be used to determine whether a particular setting is sufficiently integrated into the community.
In its draft strategic plan, the IACC also urged the U.S. Department of Health and Human Services and other federal agencies to publish an “action agenda” that outlines what the federal government is doing to address housing supply issues for adults with profound autism.
The IACC will discuss the strategic plan at its upcoming Aug. 27 meeting.
What happens to adults with autism who have no one to advocate for them?
Before they turned 21, Matt and Dan lived at the Camphill School in Pennsylvania, a residential farmstead where they worked with peers and co-workers. They grew organic food and cared for animals. The spacious, natural setting met their acute sensory needs and gave them room to explore.
However, once they aged out of the program, the state’s limited funding for alternative settings forced them into the group home system, according to a 2021 blog post by Matt and Dan’s mother, Jody Weaver.
Under Pennsylvania’s “dogmatic” interpretation of the HCBS settings rules, Weiss said, group homes located in mainstream neighborhoods qualify as being integrated into the community, even if the residents have little to no social contact with their neighbors.
For Matt and Dan, living in a group home meant “endless hours trapped in houses watching TV or lying in bed, poor food choices, hours of van rides or maybe a walk in a mall or around a neighborhood,” according to Weaver.
“They have hated it since day one and their behaviors have shown it,” she wrote.
According to Weiss, Pennsylvania’s Department of Human Services initially refused to acknowledge that the group home setting wasn’t working for Matt and Dan.
But in 2021, after five years of increasingly dangerous behavior, the group home provider refused to take the twins back, saying it was a liability risk — because it was clearly no longer safe for anybody, Weiss said.
Pennsylvania granted Matt and Dan an emergency respite waiver so they could live at Woods Services, a healthcare campus community. The twins’ behavior stabilized.
However, when the emergency waiver expired, the state tried to push the twins back into the group home system.
“We were like, ‘Are you kidding me?’” Weiss said. “This is how they ended up here — because they were in a group home.”
After the family threatened to fight the decision in court, Pennsylvania backed down. The state said it would use county and state funding, rather than Medicaid HCBS waiver funding, to pay for the twins to continue living at Woods Services.
“I’m happy for the twins, but what about all these other folks that are in a similar situation that can’t speak for themselves and that don’t have an advocate like me and others that are willing to help them?” Weiss asked.
Alternative communities penalized under ‘heightened scrutiny’ provision
Pennsylvania needs to be more flexible in its housing options for people like Matt and Dan, Weiss said.
She said it would cost taxpayers at least $650,000 more annually to house the twins in the group home system compared to housing them at Woods Services — and still the state didn’t want to let the twins stay at Woods Services, where they were happier.
New York and New Jersey interpret the HCBS settings rule more flexibly. Residents in those states can use state HCBS waiver funding to pay for residency at Woods Services — even though the Woods campus is in Pennsylvania, Weiss said.
She said, “Woods serves residents from 27 states, many of whom are using their state waiver funding to receive care.”
Pennsylvania and other states that narrowly interpret the HCBS settings rule consider Woods Services and other farmsteads or intentional communities for adults with developmental disabilities to be too isolated from the broader community, Weiss said.
That means they are ineligible for funding or subject to “heightened scrutiny” before being deemed eligible.
It can take state health departments years to complete the tedious “heightened scrutiny” review process for a particular housing option. Some states say they don’t have the administrative time and resources, Weiss said.
A Pennsylvania Department of Human Services spokesperson told The Defender that residents can choose whatever kind of housing services they want for their adult child with severe autism.
However, Weiss pushed back against the claim. She noted that Pennsylvania regulations (sections 6100.444 and 6100.445) prohibit residential and day service funding in a farmstead or campus-based setting.
“Many families seeking farmstead or campus-based residential services are left with no choice but to place their children in group homes that cannot meet their level of need,” Weiss said.
“Making matters worse, when families attempt to pool their private resources to develop these settings, they are informed that residents will lose their HCBS funding simply due to the setting,” she said.
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Groups call for rescission of HCBS settings rule
The National Council on Severe Autism said in a statement that CMS should “end heightened scrutiny” review because it disproportionately penalizes alternative settings.
Or CMS should simply rescind the settings rule altogether, the group said. According to the National Council on Severe Autism:
“The HCBS Settings Rule has imposed significant and unnecessary obstacles to the creation of desperately needed projects and programs serving those with severe autism and other complex disabilities.
“It limits freedom, stifles innovation, and burdens families already navigating some of the most complex care challenges imaginable.”
More than 80 other organizations have also called for rescission of the settings rule, according to a recent presentation by Together for Choice on the rule’s impact.
CMS and the Kentucky Cabinet for Health and Family Services did not respond to our request for comment by the deadline.
Related articles in The Defender
- Exclusive: DOJ Memo Sparks Fear That States Could End Services for Adults with Autism
- ‘What Happens to My Child When I Die?’ The Crisis Facing Parents of Adults With Autism
- IACC Calls for New Federal Autism Policies, ‘Precision’ Medical Treatment and Better Long-Term Care
- RFK Jr.’s New Autism Advisers Set Sights on ‘Many Unanswered Questions’
- ‘Autism Tsunami’: Society’s Cost to Care for Expanding, Aging Autism Population Will Hit $5.54 Trillion by 2060
