Governors Push Back on DOJ's Efforts to Undercut Olmstead

 In The Politics of Autism, I discuss court cases involving the civil rights of people with autism and other disabilities. 

Trump does not care.  He despises people with disabilities.  His head of the DOJ Civil Rights Division is a political hack who uses the r-word as a slur.

In August, the Department of Justice quietly released a memo pertaining to the landmark 1999 disability civil rights case Olmstead v. L.C.  That precedent, the memo claimed without evidence, increases homelessness.

Eighteen governors signed a letter asking the Justice Department to stop its efforts to undercut enforcement of the Olmstead decision.  

For nearly four decades, the Americans with Disabilities Act (ADA) has embodied a fundamental national commitment that disability should not be a basis for exclusion or diminished opportunity.  States have worked with local and federal government partners since 1990 to implement both the letter and spirit of this much-celebrated, bipartisan law.  On June 18, 2026, the Department of Justice’s Office of Legal Counsel issued a legal opinion that questions the longstanding legal framework surrounding the rights of Americans with disabilities to live with dignity, independence, and full community participation.  On July 20, 2026, the DOJ declared that it will not rely on its own longstanding Olmstead guidance, issued June 22, 2011. 

As Governors, we are deeply concerned by the federal government’s retreat from its longstanding role in protecting the right to community integration and that such actions signal changes to programs serving individuals with disabilities. For more than 25 years, the Supreme Court’s landmark decision in Olmstead v. L.C. has built on the commitment of the ADA and reinforced the principle that people with disabilities should have the opportunity to live, work, receive services, and participate in their communities rather than being unnecessarily segregated in institutional settings. This is a principle Americans are proud of and is a Northstar internationally for people with disabilities. 

This principle has changed lives and transformed this country. Red and blue states have spent decades investing in home and community based services, developing supportive housing, expanding access to education and employment opportunities, and redesigning and strengthening community based services.  These efforts reflect not only our progress under federal civil rights law, but our shared conviction that people with disabilities belong in their communities, whenever possible.  

Recent actions have already created significant uncertainty for states and for the workforce of dedicated individuals who support people with disabilities throughout the country.  More importantly, people with disabilities and their families are terrified about moving backwards - or worse - becoming institutionalized against their will - after decades of advocacy.  We simply cannot risk reversing the progress this country has made in ensuring Americans with disabilities have meaningful choices about where and how they live their lives.   

We strongly oppose any federal actions that would weaken protections against unnecessary segregation or diminish the right of people with disabilities to receive services in the most integrated settings appropriate to meet their needs, consistent with established Olmstead precedent.  Community integration is not an abstract legal concept. It means having a home, being able to work, attend school, shop, worship, build relationships, and participate in an ordinary civic life.  

This is not a partisan issue. The ADA was enacted with overwhelming bipartisan support and signed into law by President George H.W. Bush. The continued movement toward community-based services has progressed under Republican and Democratic administrations and in states led by Governors of both parties.  States may differ in how we administer these services but we stand united around the basic principle that Americans with disabilities are full members of our communities and should not be forced into segregation to receive the services and support they need.   

We stand ready to work with the Administration and Congress to strengthen community-based systems while preserving individual choice.  We must ensure that our nation continues moving toward greater independence, inclusion, and opportunity for all Americans with disabilities.  We urge you not to turn back the clock on generations of progress.  

•  Governor Kathy Hochul State of New York 
• Governor Ned Lamont State of Connecticut 
• Governor JB Pritzker State of Illinois 
• Governor Wes Moore State of Maryland 
• Governor Gretchen Whitmer State of Michigan 
• Governor Mikie Sherrill State of New Jersey 
• Governor Katie Hobbs State of Arizona 
• Governor Matt Meyer State of Delaware 
• Governor Janet Mills State of Maine 
• Governor Maura Healey State of Massachusetts 
• Governor Tim Walz State of Minnesota 
• Governor Michelle Lujan Grisham State of New Mexico 
• Governor Josh Stein State of North Carolina 
• Governor Josh Shapiro State of Pennsylvania 
• Governor Bob Ferguson State of Washington 
• Governor Tina Kotek State of Oregon 
• Governor Dan McKee State of Rhode Island 
• Governor Tony Evers State of Wisconsin 

Backward on Community Integration

In The Politics of Autism, I discuss court cases involving the civil rights of people with autism and other disabilities. 

Trump does not care.  He despises people with disabilities.  His head of the DOJ Civil Rights Division is a political hack who uses the r-word as a slur.

In August, the Department of Justice quietly released a memo pertaining to the landmark 1999 disability civil rights case Olmstead v. L.C.  That precedent, the memo claimed without evidence, increases homelessness.

Jayme Fraser at USA Today:

On Aug. 31, the Trump administration moved to make it easier for states to place disabled and elderly people in institutions. To appease a lawsuit from several Republican-led states, government lawyers told a federal judge they were willing to erase a 50-year-old provision requiring federal funds be used to care for people in their homes, whenever possible.

In effect, it undermines a landmark Supreme Court case from Papadopoulos’ home state that said denying people the ability to live in their communities is discrimination.

Advocates say the government’s concession erodes hard-fought civil rights under the Americans with Disabilities Act. And it threatens the return of a system where disabled people are locked in institutions instead of being allowed to live in their homes.

From the American Association of People with Disabilities:

The Defend Community Integration Coalition (DCIC) strongly condemns the recent proposed joint resolution filed August 31 in the ongoing case Texas v. Kennedy. The proposed resolution aims to strike down the 2024 community integration regulations under Section 504 of the Rehabilitation Act of 1973. This action flies in the face of decades of judicial precedent and Congressional intent to ensure that community integration remains a civil right for all people with disabilities.

As national disability rights leaders and allies, we have worked hard for decades to advance community integration as a foundational civil right for people with disabilities. We condemn any attacks aimed at undoing this work led by and for people with disabilities.

For people with disabilities, there is no right more foundational than the right to make our own choices. Far too often, we find ourselves in the position where others decide our lives for us. It takes a lot to ensure that the choices we have are real choices. It has taken years to build the supports we need to go to school, work, eat, stay housed, and raise our children.

As humans, we deserve the security of knowing that we have what we need to live our lives.

Life is not just about getting three square meals a day and getting our meds on time. It is about growing, working, loving, dreaming, failing and reaching our potential. It is about deciding when to get up, when to go out, what to eat, and with whom to live. It is hard to do these things when we are forced to stay in congregate settings where we have no say over most aspects of our lives.

Disabled people are survivors. We are spouses, parents, siblings, classmates, colleagues, and neighbors. Most of all, we are Americans determined to fight back against ideas and actions that take away our dignity and roll back years of hard-fought progress and rights.

As a coalition we will continue to work together and fight for the full realization of the community integration mandate. Community integration of people with disabilities is non-negotiable.

This is a monumental fight. In a moment like this, we need to join forces and work collectively. We are stronger together.

Join the Defend Community Integration Coalition: https://bit.ly/3V8NfIy
Additional Resources and Calls to Action

• AAPD’s webinar “Understanding and Protecting Your Disability Rights Under Olmstead, the ADA, and Section 504” and action steps: https://bit.ly/4gCGaHi
• Statement of National Disability Organizations on the Proposed Resolution: https://bit.ly/4zTYapt
• DREDF’s Resource Page: https://bit.ly/4h78eEf
• An excellent summary from Red Line for Civil Rights: https://bit.ly/4qNSTeZ

Trump and Institutions

In The Politics of Autism, I discuss court cases involving the civil rights of people with autism and other disabilities. 

For decades, people with autism and other developmental disabilities languished in large institutions, many of which were snake pits.  

Annie Ma at AP:

Last month, the Education Department announced it would offload oversight of special education to the Department of Health and Human Services, led by Robert F. Kennedy Jr., whose comments on the limits of disabilities such as autism have drawn sharp rebukes from advocates and lawmakers.

Meanwhile, following a White House push to police homelessness, the Department of Justice released guidance that lowered the barrier to institutionalizing any person with a disability.

Taken together, the actions signal a worrying return to a reality where people with disabilities are pushed to the margins of society, advocates said.

Trump has long called for bringing back the mental institutions.

February 22, 2018:

So we're going to be talking seriously about opening mental health institutions again, in some cases, reopening. I can tell you, in New York, the Governors in New York did a very, very bad thing when they closed our mental institutions, so many of them. You have these people living on the streets. And I can say that, in many cases throughout the country, they're very dangerous. They shouldn't be there. So we're going to be talking about mental institutions. And when you have some person like this, you can bring them into a mental institution, and they can see what they can do. But we've got to get them out of our communities.

February 26, 2018:

But, in the old days, you would put him into a mental institution. And we had them in New York, and our government started closing them because of cost. And we're going to have to start talking about mental institutions, because a lot of the folks in this room closed their mental institutions also.

 August 14, 2019:

And we're looking at mental institutions, which we used to have. Like, as an example, where I come from in New York, they closed up almost all of their mental institutions—or many of them—and those people just went onto the streets. And they did it for budgetary reasons. Well, New York is not unique; they've done that in many places.

January 20, 2026:

Signed an Executive order to bring back mental institutions and insane asylums. We're going to have to bring them back. Hate to build those suckers, but you've got to get the people off the streets.

You know, we used to have—when I was growing up, we had, in my area in Queens—I grew up in Queens. We had a place called Creedmoor. Creedmoor. Did anybody know that? Creedmoor. It was a big—I said, "Mom, why are those bars on the building?"

I used to play Little League Baseball there, at a place called Cunningham Park. I was quite the baseball player. You wouldn't believe it. But I said to my mother, "Mom"—she would be there. Always there for me. She said, "Son, you could be a professional baseball player." I said, "Thanks, Mom."

I said, "Why are those bars on the windows?" Big building. Big, powerful building. It loomed over the park, actually. It was pretty—she said, "Well, people that are very sick are in that building." I said, "Boy." I used to always look at that building, and I'd see this big building—big, tall building. It loomed over the park. It was sort of—now that I think, it was a pretty unfriendly sight.

But I'll never forget. I don't know if it's still there, because they got rid of most of them. You know, they—the Democrats in New York, they took them down, and the people live on the streets now. That's why you have a lot of the people in California and other places, they live on the streets. They took the mental institutions down. They're expensive.

But I'd say: "Why does that building have those bars? Boy." It didn't—it wasn't normal. You know, you're used to looking at, like, a window. But this, when you look at it, all the steel—vicious steel, tiny windows, bars all over the place. Nobody was getting out. It's called a mental institution. That was an insane asylum.

 

Trump Wants to Bring Back Snake Pits

In The Politics of Autism, I discuss court cases involving the civil rights of people with autism and other disabilities. 

Julia Metraux at Mother Jones:

On Thursday, the Department of Justice quietly released a memo pertaining to the landmark 1999 disability civil rights case Olmstead v. L.C., which curtailed states’ power to institutionalize people diagnosed with mental illnesses, and related federal civil rights laws. That precedent, the Trump administration memo argues—in conjunction with federal civil rights and disability rights statutes—increases homelessness, a claim that likely signals a push to expand institutionalization in restrictive psychiatric facilities.

The administration’s claims, according to University of Michigan law professor Sam Bagenstos, are not rooted in fact.

“It’s just absurd,” says Bagenstos, general counsel for the Department of Health and Human Services and the Office of Management and Budget during the Biden administration, calling the Olmstead decision “one of the most effective tools in combating homelessness” by encouraging states to augment mental health and housing services outside institutions.

More concerning is the fact that the White House instructed the Justice Department to produce the document, which Bagenstos says “suggests we might potentially be seeing an executive order” directing DOJ and the Department of Health and Human Services to roll back rules meant to avoid institutionalization. The memo, however, does not change laws itself.

Last year at The Daily Caller, Reagan Reese reported an interview with Trump:

 REESE: It’s horrible. I want to get to Russia. I want to ask you another question about D.C. crackdown. Would you be open to the government reopening insane asylums for people with serious mental illness?

TRUMP: Yeah I would.

REESE: You would?

TRUMP: Well, they used to have them, and you never saw people like we had, you know, they used to have them. And what happened is states like New York and California that had them, New York had a lot of them. They released them all into society because they couldn’t afford it. You know, it’s massively expensive. But we had, they were all over New York. I remember when I was growing up, Creedmoor. They had a place, Creedmoor, they had a lot of them, Bellevue, and they were closed by a certain governor. And I remember when they did, it was a long time ago, and I said they didn’t release these people? And they did. They released them into society, and that’s what you have. It’s a rough, it’s a rough situation.

Creedmoor was a notorious snake pit.  See a 2012 piece in AbandonedNYC:

Creedmoor State Hospital was habitually under scrutiny during this period, beginning in the 1940s with an outbreak of dysentery that resulted from unsanitary living conditions in the wards.

The hospital had spiraled completely out of control by 1974 when the state ordered an inquiry into an outbreak of crime on the Creedmoor campus. Within 20 months, three rapes were reported, 22 assaults, 52 fires, 130 burglaries, six instances of suicide, a shooting, a riot, and an attempted murder, prompting an investigation into all downstate mental hospitals. As late as 1984, the violent ward of Creedmoor Psychiatric Center was rocked with scandal following the death of a patient, who had been struck in the throat by a staff member while restrained in a straitjacket.

In the late 20th Century, the development of antipsychotic medications and new standards of treatment for the mentally ill accelerated a trend toward deinstitutionalization.  A series of dramatic budget cuts and dwindling patient populations led to the closing of farm colonies across the United States, and a marked decline at Creedmoor.  The campus continues to operate today, housing only a few hundred patients and providing outpatient services, leaving its turbulent past behind.  Many of the buildings have been sold off to new tenants.  Others, like Building 25, lie fallow.

 Snake pits like Creedmoor housed many autistic people.

 

Trump and Stigma

 In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his words and actions have shown, he despises Americans with disabilities.   He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

Caitlin GIbson at WP:

Ashley Kline had made a point to avoid watching the White House briefing about autism. She already had a sense of what President Donald Trump and Health and Human Services Secretary Robert F. Kennedy Jr. might say, and how it would make her feel to hear them say it. As the mother of a 5-year-old autistic son, she’d decided: “I wouldn’t let it get to me.”

But after the news conference ended Monday, Kline picked up her phone and scrolled through the breaking news stories. As she stood in her kitchen in Indiana, her attention vacillated between the reality around her and the one on her screen. She started cooking dinner for her family. She saw that the president had told pregnant women they should only take Tylenol if they couldn’t “tough it out.” She helped her 5-year-old, Andrew, and his big brother make birthday cards for their dad. She read that Trump had referred to autism as a “horrible, horrible crisis.”

...

To Kline, this kind of rhetoric feels both harmful and ominous. “I definitely fear that if we keep trending along this path where we are buying what these leaders are selling, telling us that autism is horrible and it rips families apart —” Kline pauses. “I don’t want it to get to a point where inclusion is just thrown out the window, and people start insisting that the best thing for autistic children and adults is to be hidden behind walls once again.”

 In the not-too-distant past, autistic people got the label of "retarded" or "mentally ill" and ended up in snakepit institutions such as Creedmoor Psychiatric Center. At The Daily Caller a few weeks ago, Reagan Reese interviewed Trump:

REESE: It’s horrible. I want to get to Russia. I want to ask you another question about D.C. crackdown. Would you be open to the government reopening insane asylums for people with serious mental illness? 

TRUMP: Yeah I would.

REESE: You would?

TRUMP: Yeah I would.

TRUMP: Well, they used to have them, and you never saw people like we had, you know, they used to have them. And what happened is states like New York and California that had them, New York had a lot of them. They released them all into society because they couldn’t afford it. You know, it’s massively expensive. But we had, they were all over New York. I remember when I was growing up, Creedmoor. They had a place, Creedmoor, they had a lot of them, Bellevue, and they were closed by a certain governor. And I remember when they did, it was a long time ago, and I said they didn’t release these people? And they did. They released them into society, and that’s what you have. It’s a rough, it’s a rough situation.

REESE: How soon –

TRUMP: Why is that a big thing? People are thinking about that?

REESE: Well –

TRUMP: Because, you can’t have these people walking around.

ADA 35

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.

On this day in 1990, George H.W. Bush signed the Americans with Disabilities Act:

 Barbara Merrill and Tony Coelho at TIME:

Yet, as we celebrate the ADA's enduring legacy this year, the future for people with disabilities looks less certain. The ADA’s vision is not self-sustaining. Its promise is fulfilled through an ecosystem of vital support services, many of which rely on Medicaid funding. For millions of Americans living with disabilities, Medicaid is a lifeline that provides access to essential home- and community-based services (HCBS). These services include the most basic activities of daily living like bathing, dressing, eating, and more, as well as the residential programs, employment supports, and assistive technologies that allow people with I/DD to live with dignity in their own homes and communities. These services are at the heart of the ADA and crucial to making inclusion a reality.


Following the passage of President Donald Trump’s tax bill, which will cut aproximately $1 trillion from Medicaid over the next several years, these support systems are in jeopardy. This attack on Medicaid threatens to unravel decades of progress toward equal opportunity for individuals with disabilities, as access to these services will undoubtedly become more limited.

 

Trump wants to criminalize and institutionalize the unhoused while slashing funding for housing, mental health care, and veterans’ services. You don’t get to gut the social safety net AND cage the fallout.

This executive order is just cruelty masquerading as policy. https://t.co/bnh0MGmzus

— Rep. Emanuel Cleaver (@repcleaver) July 25, 2025

Money Follows the Person

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

An August 22 release from the Center for Medicare and Medicaid Services:

Today, the U.S. Department of Health and Human Services (HHS), through the Centers for Medicare & Medicaid Services (CMS), awarded approximately $25 million in planning grants to five new states and territories to expand access to home and community-based services (HCBS) through Medicaid’s Money Follows the Person (MFP) demonstration program. With these awards, 41 states and territories across the country will now participate in MFP. The Biden-Harris Administration is committed to ensuring all seniors and people with disabilities receive the care they need, and this investment is the latest action to help people receive care in the setting of their choice and reduce unnecessary reliance on institutional care.

“The Biden-Harris Administration is deeply committed to ensuring everyone is able to get the high-quality care they need – within the comfort of their own home or community,” said HHS Secretary Xavier Becerra. “Today we are expanding access to home and community-based services so even more states and territories are equipped to best serve the millions of seniors and people with disabilities across the country.”

“We’re putting the full weight of this agency behind solutions that can meet people where they are and help get them to where they want to be when it comes to health care,” said CMS Administrator Chiquita Brooks-LaSure. “Money Follows the Person has a proven track record of helping seniors and people with disabilities transition safely from institutional care to their own homes and communities. Letting ‘money follow the person’ is key to those successes, and to the Biden-Harris Administration’s commitment to affordable, accessible, person-centered care.”

Awards of up to $5 million are being announced for Illinois, Kansas, and New Hampshire, as well as for American Samoa and Puerto Rico – the first time MFP grants have been made available to territories. These awards will support the early planning phase for their MFP programs. This includes: Establishing partnerships with community stakeholders, including those representing diverse and underserved populations, Tribal entities and governments, key state and local agencies (such as state and local public housing authorities), and community-based organizations;
Conducting system assessments to better understand how HCBS support local residents;
Developing community transition programs;
Establishing or enhancing Medicaid HCBS quality improvement programs; and
Recruiting HCBS providers as well as expert providers for transition coordination and technical assistance.

A new report from CMS also describes how MFP has helped facilitate more than 107,000 transitions out of institutional settings since 2008. It also indicates that, thanks in part to programs like MFP, more than 85% of people who used Medicaid long-term services and supports in 2019 received HCBS rather than institutional services. First authorized in 2006, MFP has provided states with more than $4 billion to support people who choose to transition out of institutions and back into their homes and communities.

Supporting HCBS is a critical part of the Biden-Harris Administration’s commitment to helping older adults and individuals with disabilities live safely and independently in their homes and communities. Medicaid is the primary funder of HCBS nationally, and plays a critical role in supporting states’ efforts to strengthen these services for their beneficiaries. Through the American Rescue Plan, President Biden temporarily increased Medicaid funding for HCBS, and every state elected to participate in this program has submitted a detailed plan for how they will use these funds. The administration estimates that this change will ultimately result in $25 billion in increased funding, allowing states to develop innovative ways to address existing HCBS workforce and structural issues, expand the capacity of critical services, and begin to meet the needs of people with disabilities, family caregivers, and providers. In June 2022, HHS notified states that they now have an additional year – through March 31, 2025 – to use this critical funding made available by the American Rescue Plan.

For more information on MFP, visit Medicaid.gov.

Waiting Lists and Shortages

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

The ANCOR Foundation and United Cerebral Palsy have published the Case for Inclusion 2022.  Some findings:

• Nationally, the average DSP turnover rate in 2020 increased by about one percentage point to 43.6%. Meanwhile, vacancy rates for full-time direct support positions increased from 8.5% in 2019 to 12.3% in 2020—a roughly 45% increase. 
• As of 2018, 16 states and the District of Columbia had closed their last remaining large, state-run institutions. Joining the ranks of states to have fully deinstitutionalized since last time the Case for Inclusion reported these data are Montana and Tennessee. 
• 1 in 5 (21.1%) people with IDD who received employment or day supports were participating in an integrated employment service. Within the 33 states that report that they collect data on the number of people working, 19.3% of individuals participating in integrated employment services were working for pay. 
• There were 589,940 people on states’ waiting lists for home- and community-based services nationally. Nearly 4 in 5 (78%) of those waiting were concentrated in just five states. Because this key findings report cannot cover every data point across all 80 measures contained in the Case for Inclusion’s seven main issue areas, we invite you to learn more and explore the data at caseforinclusion.org 

The report confirms that Texas is a hellhole for people with disabilities: 

• "Strikingly, more than 78% of people on states’ waiting lists live in the five states with the largest waiting lists: Texas (323,434), Ohio (68,644), Louisiana (27,509), Florida (21,864) and Illinois (19,354)."
• "States that had the largest number of PRFs in operation were Texas with 13, Ohio with eight and Illinois with seven. In terms of the number of people living in PRFs, Texas and Illinois had the dubious distinction of topping that list, with 2,969 and 1,664 residents, respectively, followed by New Jersey, with 1,325 people with IDD living in a PRF."

Explore 80 data measures for all 50 states and DC by issue at https://t.co/vMRqpyzHq5 or by state https://t.co/iBTzzisdxg #CaseforInclusion2022

— ANCOR (@TheRealANCOR) March 8, 2022

Deinstitutionalization, Insurance, and Prevalance

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

Rachel Burr Gerrard at STAT:

As the deinstitutionalization movement took off, many children who would have been diagnosed with mental retardation were instead diagnosed with autism, not because the diagnosis was more accurate but because its treatment was preferable. As autism diagnoses increased, diagnoses of mental retardation and other learning disabilities decreased. More diagnoses and more patient advocacy led to more money dedicated to autism therapy and research, which in turn led to even more diagnoses. This trend has continued today as the number of psychiatric beds continues to decrease and parent advocacy groups successfully lobby to raise billions for autism research.

Another powerful factor behind the rise in autism rates is the passing of insurance mandates. Since 2001, all 50 states have instituted mandates requiring non-self-funded private insurance plans to cover behavioral therapies for autism. These mandates can save families up to $50,000 a year on treatment. The prevalence of autism increased an average of 10% directly following a state’s mandate implementation and 18% after a mandate had been place for a few years.

Insurance mandates increase autism rates because, in borderline cases, practitioners and parents push for a diagnosis that ensures a child receives coverage for the help the child and family need. The families of children with developmental disorders other than autism must often rely on broad laws such as the Individuals with Disabilities Education Act (IDEA), which vaguely states that each child must receive a “free and appropriate public education in the least restrictive environment.” IDEA’s implementation is underfunded by Congress and largely depends on each state’s interpretation of it. With such limited options for children with special needs, it makes sense that caring practitioners might push for a diagnosis that guarantees children receive the help they need.

HCBS and Developmental Disabilities

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

From Center for Medicare and Medicaid Services,  Long-Term Services and Supports Rebalancing Toolkit

• The Centers for Medicare & Medicaid Services (CMS) recognizes that states are working hard to ensure that individuals eligible for long-term services and supports (LTSS) receive high quality and cost-effective person-centered care that is consistent with the individual’s needs and wishes and that promotes access to services in home and community-based settings. As the primary funder of LTSS nationally, Medicaid can play an important role in supporting states’ efforts with LTSS rebalancing, which is commonly defined as achieving a more equitable balance between the share of spending and use of services and supports delivered in home and community-based settings relative to institutional care. 
• 79 percent of total LTSS spending for individuals with intellectual and developmental disabilities (I/DD) was dedicated to HCBS

Biden on Caregiving and HCBS

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

From Joe Biden's policy statement on caregiving:

Biden will allocate $450 billion to give more people the choice to receive care at home or in supportive community situations, or to have that choice for their loved ones. He will help states offer cost-effective options for affordable primary and preventive care, and affordable support services like help with meals, transportation, home safety, and quality day programs for older Americans. This commitment will reduce health expenditures, help more Americans avoid unnecessary and expensive hospitalizations, and result in an expansion of the caregiving and community health workforce by roughly 1.5 million jobs. Specifically, Biden will: 

• Eliminate the current waitlist for home and community services under Medicaid. Approximately 800,000 people are on the waitlist for home and community care under Medicaid. It can take as many as five years for these individuals to get the services they badly need. Biden will increase Medicaid funding to states, the District of Columbia, and outlying territories to pay for the full cost of ensuring these 800,000 individuals and families receive long-term services and supports in the most appropriate setting, with the support of qualified care providers. Following the elimination of the current waiting list, states will be given a choice to convert their current home and community based care services waivers into a new state plan option with an enhanced federal match. This will enable states to make home and community-based services more available to people in need. 
• Establish a long-term services and supports innovation fund to help expand home and community-based alternatives to institutional care. Biden believes we must move aggressively to eliminate the institutional bias that pervades our public programs. A Biden Administration will dedicate substantial resources to this fund to help states and locally based entities test innovative models that expand home- and community-based alternatives to institutional care. These could include approaches that provide care while allowing individuals to retain independence, such as day programs and respite services that enable unpaid caregivers to work, alternative home and community models that coordinate or directly provide care, and Medicaid buy-in models. For example, the CAPABLE (Community Aging in Place-Advancing Better Living for Elders) Program provides home repairs and modifications to help create safer, more functional home environments for older adults. An initial trial in Baltimore found about $3,000 in program costs yielded more than $20,000 in savings. The pilot is now being tested in 27 cities in 16 states. Successful, cost-effective approaches to long-term care will be scaled up nationally. This fund will be administered by the Center for Medicare and Medicaid Innovation, which was established by the Affordable Care Act to support innovations that improve health care while constraining costs

Housing for Adults

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Housing is a big one for autistic adults.

The Arc has a report titled: "THERE’S NO PLACE LIKE HOME: A National Study of How People with Intellectual and/or Developmental Disabilities and Their Families Choose Where to Live." The report involved a national online survey and focus groups in Illinois.  From the executive summary:

The deinstitutionalization of people with intellectual and/or developmental disabilities (I/DD) has reached an all-time high, with the majority of people with I/DD living in community-based settings. Community living is not only preferred by people with I/DD, it is also more cost effective and results in increased positive outcomes across almost all quality of life domains, improved health and safety outcomes, and increases in community participation, relationships, strengthened family contact, and self-determination.

Currently, around 75% of adults with I/DD live with a parent or other caregiver and are not connected to publicly available services and supports. In addition, nearly one million households have a caregiver over the age of 60. As a result, aging parents and family members frequently serve as unpaid primary caregivers for their family member with I/DD. Many of these families worry about what will happen when they are no longer able to provide their family member with I/DD support, including whether their family member will have to live somewhere they do not want to live. To address these concerns, it is important and necessary for people with I/DD and their families to plan for the future. However, more than half of families have indicated that they do not have a plan for the future.

...
Findings revealed that although there were many reasons people with I/DD moved from their family homes, or moved across residential settings, most commonly people moved as a result of a need for more support, family members having difficulty caring for their loved one, a desire for more independence, or emergency placements resulting from health or safety issues. People with I/DD and family members of people with I/DD often completed rigorous research to determine which options they had available to them; however, information was difficult to find and there was a general lack of resources. In addition, most people with I/DD, especially those with higher support needs, had few options to choose from as a result of an underfunded and inadequate service system. In addition, most of the time family members made the decision about where their family member with I/DD would live on their behalf, sometimes while consulting them, but other times without.

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As a result of these wants and needs, the overwhelming majority of people with I/DD as well as family members wanted people with I/DD to live in their own homes or apartments. People with I/DD also dreamt of having opportunities to learn new skills, such as cooking or cleaning, having more independence, being able to see their friends whenever they wanted, having a physically accessible home, and being treated with respect.

Autistic people accounted for about 22 percent of the disabled people in the sample. From the report:

Athough it was a very small group – only a handful of people – there were some family members who also blamed the lack of institutional options for people with higher support needs on “people who believe they know what’s best,” “influencers who think everyone belongs in one type of setting,” and “autism self-advocates [that] have ruined it for the severely autistic."

Opposing Trumpcare

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities. 

From The Arc:

“This legislation ends Medicaid as we know it. If it is enacted, Medicaid will no longer be a state and federal partnership – the federal government will cap what it provides, leaving the states to pick up the pieces. It will have a dire impact on the lives of people with intellectual and developmental disabilities who rely on Medicaid and the Affordable Care Act for their health care, community supports, and as a way to live independently in their communities.

“Thanks to the Medicaid expansion under the Affordable Care Act, millions of people, including people with disabilities, their family members, and their support professionals, have gained access to health coverage. Lives have been saved because people have had access to affordable, comprehensive health coverage. The tax credits and changes to health savings accounts proposed in this bill are not adequate to meet needs of people with intellectual and developmental disabilities or those with chronic health conditions. And we have no idea how much this approach will cost, or how many people will lose coverage as Congress is rushing this bill through before the budget experts can do the math on the price tag in dollars and impact on lives.

“The bottom line is that under this legislation, Medicaid will be decimated. People will lose vital benefits and services that support their basic human right to a life in the community. It will turn back the clock on the progress we have made as a society over the last 65 years. It’s morally reprehensible, and our nation cannot let this happen,” said Peter Berns, CEO of The Arc.

From the National Disabilities Rights Network:

“The legislation revealed by House Republicans last night is a giant step backwards in the treatment and care of individuals with disabilities.

“It repeals the expanded Medicaid match that encourages the community integration of people with disabilities and counters biases that lead to institutionalization. It permits discrimination against people with disabilities in the insurance market for their pre-existing conditions. It caps Medicaid funding which means a sharp reduction in services and availability of this important health care lifeline for children and adults with disabilities. In short, this plan is terrible.

“The National Disability Rights Network urges the House not to send people with disabilities back to a time when it was nearly impossible for us to obtain health insurance, live in the home of our choice or participate in community life. We will never go back to those days. Never.”

From the Consortium for Citizens with Disabilities:

Medicaid is a jointly funded program with matching state and federal funds. Under a Medicaid per capita cap, the federal government would set a limit on how much to reimburse states based on enrollment in the Medicaid program. Unlike current law, funding would not be based on the actual cost of providing services. Much like the proposed block grants, the intent of the per capita caps is to restructure the program and save the federal government money. Inevitably there will be cuts in funding in the states. The negative impacts to Medicaid recipients could include:

● Losing home and community-based services and supports. Waiting lists would quickly grow.

● Losing other critical services such as personal care, mental health, prescription drugs, and rehabilitative services. If funds become scarcer, states may decide to stop providing these services altogether.

● Being forced into unnecessary institutionalization. States could return to the days of “warehousing” people with disabilities in institutions.

● Shifting the costs to individuals or family members to make up for the federal cuts. The costs of providing health care and long term services and supports will not go away, but will be shifted to individuals, parents, states, and providers. For additional information, see CCD’s fact sheet about Medicaid.

Trump, Sessions, and the Americans with Disabilities Act

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  Trump has a bad record on disability issues more generally.

At Jewish Journal, Michelle K. Wolf writes that disability advocate worry about ADA enforcement in the Trump administration.  Trump properties have been subject to ADA lawsuits.

Moreover, the ADA is enforced by the Department of Justice civil rights division, which is under the purview of the U.S. attorney general. Because Trump’s nominee for that position is Alabama Republican Sen. Jeff Sessions, disability advocates are deeply worried that the Justice Department is likely to ignore ADA complaints.

A coalition of more than 200 national organizations committed to protecting civil rights and human rights sent a letter last week to Senate leaders of both parties, expressing “strong opposition” to Sessions’ confirmation. They cited, among other complaints, his opposition to efforts in Alabama “to provide community-based services to individuals with disabilities who were needlessly institutionalized.”

The Justice Department has the option of investigating complaints, then deciding if corrective steps need to be taken, such as mediation or litigation. If the department does nothing, the complaints will go nowhere.

In light of Trump’s history with ADA compliance and Sessions’ becoming the chief ADA enforcer, various disability organizations are wondering what will happen.
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In the autism community, there are concerns that Sessions will halt the progress of community integration and inclusion for children and adults with disabilities. As the Autism Self Advocacy Network said in response to Sessions’ nomination: “For the past several years, the Department of Justice has actively enforced the Americans With Disability Act and the Olmstead decision (which advocates for integrated living), resulting in increased community inclusion for disabled people across the country. But Sessions has suggested increasing the segregation of disabled students in public schools, calling the inclusion of students with significant disabilities ‘the single most irritating problem for teachers throughout America today.’ ”

The Leadership Conference on Civil Rights has posed the letter on its website.  Here is the relevant passage:

Senator Sessions opposed efforts to implement Alabama’s obligation to provide community-based services to individuals with disabilities who were needlessly institutionalized. In addition, he called the Individuals with Disabilities Education Act's requirements to include children with disabilities in mainstream education "the single most irritating problem for teachers throughout America today" and “a big factor in accelerating the decline in civility and discipline in classrooms all over America.”[xiv] This opposition to integration and inclusion is extremely concerning given the active role that the Justice Department plays in enforcing the Americans with Disabilities Act to enable people with disabilities to live independent lives, be full participants in their communities, and to be educated in neighborhood schools and regular classrooms. Senator Sessions also opposed ratification of the Convention on the Rights of Persons with Disabilities.

[xiv] Floor Statement, Education Discipline and IDEA (May 18, 2000), available at http://www.sessions.senate.gov/public/index.cfm/2000/5/education-discipline-and-idea-.

Deinstitutionalization

The National Council on Disability has a deinstitutionalization toolkit:

NCD’s Deinstitutionalization Toolkit is designed to provide all those interested in institutional closures and expanded community living opportunities for people with intellectual disabilities and developmental disabilities (ID/DD) with information, strategies, state data, and case studies that can facilitate closure and build community capacity to serve more people with ID/DD in the community.

Among other things, it explains aspects of federal law:

To date, three federal statutes govern the rights of individuals who are institutionalized: the Americans with Disabilities Act of 1990 (ADA), the Rehabilitation Act of 1973 (Rehab Act), and the Civil Rights of Institutionalized Persons Act of 1980 (CRIPA). These statutes serve as the bases of legal action for the rights of a person with an intellectual disability or developmental disability (ID/DD) and are critical to the deinstitutionalization process. As noted below, only the Department of Justice (DOJ) can bring litigation under CRIPA, although people with disabilities and their advocates may file complaints with DOJ requesting that DOJ investigate possible CRIPA, ADA, and Rehab Act violations. People with disabilities and their advocates can also file ADA and Rehab Act complaints with their regional Office for Civil Rights within the U.S. Department of Health and Human Services.

It also lays out basic steps of a strategy:

1. Develop a broad-based, well-organized coalition.
2. Explore legal remedies
3. Become experts in Medicaid, the federal Medicaid Home and Community-Based Services Waiver, and the Affordable Care Act.
4. Build your case with faces, not facts.
5. Line up leadership.
6. Analyze the political environment.
7. Seek out groups or individuals with different perspectives.
8. Use timely and targeted communication, public education, and media relations.
9. Advocate for quality assurance standards to protect health and safety of people living in community-based settings.
10. Include specific implementation steps in closure plans

Virginia ADA Agreement

A release on Thursday from the US Justice Department:

The Justice Department today announced that it has entered into a comprehensive settlement agreement that will transform the Commonwealth of Virginia’s system for serving people with developmental disabilities, including intellectual disabilities, and will resolve violations of the Americans with Disabilities Act (ADA). Under the ADA and the Supreme Court’s landmark decision in Olmstead v. L.C., individuals with disabilities have the right to receive services in the most integrated settings appropriate to their needs. The ADA and Olmstead require states to provide people with disabilities the opportunity to live and receive services in the community instead of in institutions.

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The agreement expands community-based services so that Virginia can serve people with developmental disabilities in their own homes, their family’s homes or other integrated community settings. The agreement will provide relief for more than 5,000 Virginians with developmental disabilities and will have an impact on thousands more individuals receiving developmental disability services. Over the next 10 years, Virginia will expand community services by providing home and community-based Medicaid waivers to nearly 4,200 individuals; providing family supports to 1,000 individuals currently living in the community; and expanding and deepening its crisis services, including a hotline, mobile crisis teams and short term crisis stabilization programs. This expansion will provide individuals the opportunity to transition successfully from its five state-operated training centers to community settings that can meet their needs and prevent new people from being unnecessarily institutionalized.

The agreement will also expand opportunities for individuals with developmental disabilities to live independently through a fund for housing assistance and enhanced coordination of existing rental assistance programs. Virginia will also offer other supports for community living, including supported employment. Finally, Virginia will implement a comprehensive, robust quality and risk management system to ensure that people are safe, receive the supports and services they need, and have opportunities for real community inclusion. The agreement is court enforceable, and compliance will be monitored by an independent reviewer with extensive experience in developmental disability systems.