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

SCOTUS Case: HHC v. Tavelski

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

From the American Association of People with Disabilities

On Thursday, June 8, the United States Supreme Court issued a decision in a Supreme Court case vital to preserving civil rights for disabled and other low-income people: Health and Hospital Corporation of Marion County, Indiana (HHC) v. Talevski.

The American Association of People with Disabilities (AAPD) released the following statement in response:

AAPD is pleased that the power to hold state, municipal, and other government entities accountable for abuses and violations of rights was upheld in the recent U.S. Supreme Court ruling in HHC v. Talevski.

The court issued a 7-2 decision, with Justice Jackson writing for the majority. In this case, the family of Mr. Gorgi Talevski, a Medicaid recipient and a person with disabilities, sued the Marion County-owned agency that managed Mr. Talevski’s care in Indiana. In their lawsuit, the Talevski family alleged that the county-owned nursing home abused Mr. Talevski and violated his rights when the nursing home involuntarily transferred him to more restrictive facilities far away from his family and chemically restrained him. Health and Hospital Corp (HHC) of Marion County argued that the Talevski family did not have a right to sue them at all and brought the case to the Supreme Court. HHC questioned whether people who receive public benefits through programs like Medicaid and SNAP could sue states, counties, and other local government entities when their rights are violated.

This ruling upholds and affirms these kinds of lawsuits as a means of pursuing justice and enforcing civil rights for people who receive public benefits. This is a win for Medicaid beneficiaries, disabled individuals, low-income people, and anyone else who relies on government funding for housing, healthcare, and more. AAPD collaborated with other partners to file an amicus briefing in this case.

AAPD President and CEO Maria Town said, “This ruling is an enormous victory in the ongoing fight for equality and inclusion of disabled and other multiply marginalized people.

In HHC v. Talevski, disabled people’s use of litigation to address abuses by state entities is affirmed. Accountability for violations of Medicaid law and other disability rights legislation, such as the ADA, often relies on a private right of action to enforce the civil rights these laws establish. Lawsuits have been and will continue to be a vital tool in the continued protection and advancement of disability rights. As threats to civil rights grow, people with disabilities must use every opportunity possible to assert our dignity.

AAPD joined other disability and low-income advocates across the country in consistent awareness and education efforts on this case. As we reflect on the solidarity that contributed to this victory, we express our sincere gratitude to the Talevski family, who in their time of loss and grief, chose to pursue justice for their loved one and ultimately contributed to affirming civil rights for millions of Americans.”

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.

HCBS Access Act

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 the Autistic Self-Advocacy Network:

A one-pager about the The Home and Community-Based Services Access Act can be found as a PDF here.

The Autistic Self Advocacy Network (ASAN), The Arc of the United States, The Center for Public Representation, the National Health Law Program (NHeLP), and the Epilepsy Foundation commend Senators Brown, Hassan, and Casey and Representative Dingell, for the introduction of the HCBS Access Act (HAA), a bill that adds Home and Community Based Services (HCBS) as a mandatory Medicaid service. The HAA would build on the promises of the Americans with Disabilities Act and the Supreme Court’s Olmstead decision and provide the Federal Medicaid resources necessary for states to fulfill those promises, so that no people with disabilities or older adults are forced to live segregated from their communities.

Over the past year, COVID-19 has laid bare the real-life danger of congregate settings for people with disabilities and older adults, as infection and death rates in these settings have been catastrophic. At least 100,000 residents have died in nursing facilities and other institutions for people with disabilities. For disability advocates, this horrific news was not a surprise. Despite the deadly risks of congregate settings and the preferences of people with disabilities and aging adults to live in their own homes and communities with their friends and families, hundreds of thousands of people are on waiting lists for HCBS across the country. Medicaid has always had an institutional bias that requires states to cover congregate settings while leaving coverage of home and community-based services (HCBS) optional.

The HAA will change this. By making HCBS a mandatory Medicaid service, people with disabilities will have access to the services they need to live in their communities, without having to wait years and years for these crucial supports. The HAA will also give older adults, often forced into nursing facilities because of a lack of home care, access to the HCBS they need to age in place, something that the vast majority of aging adults want. The more than 850,000 people with disabilities and older adults currently on waiting lists would be eligible for services. In addition to supporting people where they desire to live, more wholeheartedly ending the institutional bias is cost-effective. The average cost to serve a person with a disability in a publicly-funded institution in one of the 36 states that still has them is $294,300 per person, per year while the average cost of a person served with Medicaid HCBS is $49,854 per person per year.

The HAA also provides a funding boost for HCBS. It supports states to build the infrastructure and capacity needed to serve people coming off of waiting lists, better support those already receiving services, and transition people with disabilities and older adults who want to live in the community out of dangerous congregate settings. This financial investment is absolutely crucial, especially as the pandemic-created recession slashes state budgets, putting broad swaths of services at risk. The HAA would help states and support state funded services.

The bill would also address the race and gender disparities that currently exist in accessing Medicaid HCBS and prevent the unnecessary institutionalization of Black, Indigenous and other people of color with disabilities and older adults. And the HAA would finally begin to address the HCBS workforce crisis, the essential and frontline workforce that provides services to people with disabilities and older adults is made up of mostly women—and women of color, in particular. The HAA would ensure that these workers receive a living wage.

As the country works to recover from the COVID-19 pandemic, the HCBS Access Act should be at the center of that recovery to ensure that people with disabilities can receive care and supports in their homes and communities.

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

Infections in Illinois Developmental Centers

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. 

 Jennifer Smith Richards and Jodi S. Cohen at Pro Publica Illinois:

While much of the attention related to COVID-19’s impact on vulnerable populations has focused on deaths at nursing homes, infection rates are remarkably high in another kind of residential setting: state-operated centers for adults with cognitive or behavioral disabilities.

As of Thursday, more than 1 in 5 people living in these developmental centers had tested positive for the novel coronavirus, state data shows. That’s more than double the infection rate seen in nursing homes and other long-term care facilities, where confirmed cases account for about 7% of residents, according to the Illinois Department of Public Health.

Of about 1,650 people who live in the seven developmental centers, which are scattered throughout the state, at least 355 have tested positive, or 21.5%. Eight residents have died, as have four workers.

Abuse in Iowa

In The Politics of Autism, I write:

Shortly after his inauguration, Kennedy created the President’s Panel on Mental Retardation. In a 1963 message to Congress, he called for a reduction “over a number of years and by hundreds of thousands, (in the number) of persons confined” to institutions for the mentally ill and mentally retarded. He said that these persons should be able to return to the community “and there to restore and revitalize their lives through better health programs and strengthened educational and rehabilitation services.” Though he did not use the term at the time, JFK was calling for deinstitutionalization. Over the next several decades, more and more people with disabilities such as autism would stay with their families or remain in their communities instead of entering institutions. 

But some remain in institutions.

Barbara Rodriguez at The Des Moine Register:

Iowa law enforcement joined a state investigation into alleged wrongdoing at an institution for people with severe intellectual disabilities after state fact-finding efforts turned up "additional allegations,” health officials said Tuesday.

It's the first sign the state's probe into the Glenwood Resource Center involves possible criminal activity. 

"The investigation is ongoing," said Mitch Mortvedt, a spokesman for the Iowa Division of Criminal Investigation (DCI). "We're evaluating any and all information."

The involvement of state law enforcement comes weeks after the U.S. Department of Justice told Iowa officials it was investigating allegations of federal rights violations at Glenwood. Ahead of a recent visit to the facility, DOJ officials sought documentation on whether any residents were identified for inclusion in studies about sexual arousal or "optimal hydration."

 Staff for DCI, a division within the Iowa Department of Public Safety, visited the facility on Monday, Mortvedt said.

"We're going to continue to, as we gain information, put policies and procedures in place and do the appropriate investigation that we need to," Gov. Kim Reynolds told reporters on Tuesday.

In 2019, Tony Leys reported at the same paper;

A former worker at a state institution for disabled Iowans has been acquitted of a charge that she used a butter knife to strike a young man who has severe autism.

Ayla Yates was one of six former employees at the Glenwood Resource Center who were arrested in February 2017 on charges of mistreating residents. The others pleaded guilty or were convicted at trial over the past eight months, but a Mills County jury this week found Yates not guilty of a charge of wanton neglect of a health care facility resident.

“Ayla maintained her innocence throughout the entire process,” her lawyer, Amanda Heims, said Friday. “Justice was done in this case, and it’s proof that the jury process works.”

Yates, 26, was among 13 employees of the state institution who were fired or quit amid allegations that they physically abused or verbally demeaned the facility's residents, who have profound autism or other intellectual disabilities.

Waiting in Illinois

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

An editorial in The Chicago Tribune:

Illinois was ordered eight years ago to improve its community-care offerings for residents with developmental disabilities. Yet thousands of these individuals still wait too long for placement, languishing at home while parents and caregivers despair that the disabled are losing hard-won ground in life skills and behavior.

The state’s failure to comply with a 2011 consent decree translates to people having “suffered substantially” in a situation that is “for lack of a better phrase, messed up,” U.S. District Judge Sharon Johnson Coleman said at a hearing in October, reports Marie Fazio in the Tribune.

Illinois began aiming to move more people out of large institutions in the 1970s, spurred on at various points by court rulings and other nudges to improve care. Beset by budgetary strains and stalemates, the state has not yet found a way to move the disabled who age out of school into appropriate ongoing services, leaving them and their families struggling if they can’t afford private options. “We should walk you hand-in-hand to adult services, but what happens is we’re pushing you off a cliff,” said Josh Long, principal of Southside Occupational Academy.

The Illinois Department of Human Services provides funding for a variety of services for people with disabilities, including placement in community-based group homes or entry into day programs in the community, adaptive equipment and job training. Ideally, these options position people to live full and productive lives and provide reassurance that they will be cared for when Mom and Dad can’t do it anymore.

A federal lawsuit 15 years ago accused the state of remaining stuck in an “antiquated” over-reliance on placing people with such disabilities in large public or private institutions that were “segregated and isolated from the rest of society.” The result was the 2011 consent decree requiring the state to provide community-based programs to those who requested them, whether they were in large institutions or living at home at the time. After a six-year period of corrections, the state had to continue moving people off a statewide waiting list, known as Prioritization for Urgency of Need for Services, “at a reasonable pace.”

Currently there are thousands of people on the Human Services Department list. The typical wait for services is seven years. That’s thousands of Illinois residents whose mental well-being and behavior may well deteriorate as they wait for services — and thousands of caregivers whose own health and productivity can be impacted by a lack of anywhere to turn.

Experts agree this gap in services causes terrible setbacks. "People lose all the skills they’ve established over the years,” Long said. "It’s completely heartbreaking.”

Part of the reason placements don’t happen faster: a lack of funding to ensure safe staffing of group homes. The state reimburses care providers less than the minimum wage for workers, leaving the organization to pay the difference itself or skimp on staffing. The Illinois attorney general’s office said in a recent filing that staffing problems have resulted in “restrictions in community integration opportunities, overworked staff and significant overtime being paid.”

Count this as yet another way taxpayers see dysfunctional Illinois failing them. Some of the parents on the seemingly endless waitlist have quit jobs to care for their child or even pulled up stakes and moved: Unsurprisingly, there are other states that manage these common needs more competently than Illinois.

Trump v. People with Disabilities

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 actions as president indicate, he has little use for Americans with disabilities.

From the Arc:

The Arc denounces the harmful rule that will be finalized by the U.S. Department of Homeland Security (DHS) on Wednesday, August 14. This new rule discriminates against people with intellectual and developmental disabilities (I/DD) and their families, among others. It allows the federal government to deny admission into the U.S. and unfairly restructures immigration in a way that is detrimental to individuals based on their disability and the use of vital programs like Medicaid.

The DHS final rule means the government will consider a significantly expanded list of factors to determine whether a person will be considered a “public charge.” A public charge is a person that the government thinks will (currently or in the future) be dependent on the government for support. The rule will hurt children and adults based on disabilities and chronic conditions. The use of many programs such as most Medicaid services, the Supplemental Nutrition Assistance Program (SNAP), housing assistance, and other important benefits will also be considered in the public charge test. DHS acknowledges that the new rule may have an outsized impact on people with disabilities.

“This new policy is devastating to many people with intellectual and developmental disabilities and their families. It discourages immigrant families from utilizing critical public services out of fear of harming their immigration status. The rule will increase poverty, hurt public health, and worsen housing instability. It’s the latest callous tactic in restricting access to necessary services and supports. The Arc continues our work to ensure that non-citizens with any type of disability have a fair opportunity to enter and reside legally in the U.S., without unnecessary or discriminatory restrictions based on their disability,” said Peter Berns, CEO, The Arc.

The Arc opposed the rule and submitted comments with the Consortium for Citizens with Disabilities when the rule was proposed in 2018.

For more information, see this short explainer.

Maegan Vasquez at CNN:

President Donald Trump said Thursday that the US should build more mental institutions to deal with mass shooters.

"We're going to be looking at that very closely and we're looking at the whole gun situation. I do want people to remember the words mental illness. These people are mentally ill and nobody talks about that, but these are mentally ill people. And people have to start thinking about it," Trump said ahead of his campaign rally in New Hampshire.

"I think we have to start building institutions again because you know, if you look at the '60s and the '70s, so many of these institutions were closed, and the people were just allowed to go onto the streets. And that was a terrible thing for our country. ... A lot of our conversation has to do with the fact that we have to open up institutions. We can't let these people be on the streets," he added.

Trump Again Talks About Mental Institutions

For many years, many people with autism and other developmental disorders languished in large institutions, some of which were snake pits.  JFK, whose sister was severely disabled, wanted to change things. 

In The Politics of Autism, I write:

Shortly after his inauguration, Kennedy created the President’s Panel on Mental Retardation. In a 1963 message to Congress, he called for a reduction “over a number of years and by hundreds of thousands, (in the number) of persons confined” to institutions for the mentally ill and mentally retarded. He said that these persons should be able to return to the community “and there to restore and revitalize their lives through better health programs and strengthened educational and rehabilitation services.” Though he did not use the term at the time, JFK was calling for deinstitutionalization. Over the next several decades, more and more people with disabilities such as autism would stay with their families or remain in their communities instead of entering institutions. 

Donald Trump, February 26, 2018:

You know, in the old days, we had mental institutions. We had a lot of them, and you could nab somebody like this. Because, you know, they did — they knew he was — something was off. You had to know that. People were calling all over the place.

But you used to be able to bring him into a mental institution, and hopefully he gets help or whatever — but he’s off the streets. You can’t arrest him, I guess, because he hasn’t done anything, but you know he’s like a boiler ready to explode, right? So he just — you have to do something. But you can’t put him in jail, I guess, because he hasn’t done anything.

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.

Trump Suggests Bringing Back Mental Institutions

For many years, many people with autism and other developmental disorders languished in mental institutions, some of which were snake pits.  JFK, whose sister was severely disabled, wanted to change things. 

In The Politics of Autism, I write:

Shortly after his inauguration, Kennedy created the President’s Panel on Mental Retardation. In a 1963 message to Congress, he called for a reduction “over a number of years and by hundreds of thousands, (in the number) of persons confined” to institutions for the mentally ill and mentally retarded. He said that these persons should be able to return to the community “and there to restore and revitalize their lives through better health programs and strengthened educational and rehabilitation services.” Though he did not use the term at the time, JFK was calling for deinstitutionalization. Over the next several decades, more and more people with disabilities such as autism would stay with their families or remain in their communities instead of entering institutions. 

Institutions still exist of course, but they house fewer people than in the past. At the White House listening session on school shootings, Trump suggested that he would like to turn the clock back.  He also demonstrated a total misunderstanding of why many of them closed in the first place.

You know, years ago, we had mental hospitals, mental institutions -- we had a lot of them, and a lot of them have closed. They've closed -- some people thought it was a stigma. Some people thought, frankly, it was -- the legislators thought it was too expensive.

Today, if you catch somebody, they don't know what to do with them. He hasn't committed the crime, but he may very well, and there's no mental institution. There's no place to bring him.

We have that a lot. Even -- if they caught this person -- I'm being nice when I use the word "person" -- they probably wouldn't have known what to do. They're not going to put him in jail. And yet -- so there's no -- that middle ground of having that institution, where you had trained people that could handle it and do something about it and find out how sick he really is. Because he is a sick guy, and he should have been nabbed a number of times, frankly.

Report on Community Living

From a release earlier this month by the Senate Health, Education, Labor, and Pensions (HELP) Committee: 

[Fourteen] years later, many states are failing to live up to the integration mandate of the Americans with Disabilities Act. The Supreme Court ruled in Olmstead v. L.C. in 1999 that the unnecessary segregation of individuals with disabilities in institutions is a violation of the Americans with Disabilities Act, thus directing states to enable community-based long-term care services for these Americans.

The report, titled “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act,” is the result of requests for information sent by Chairman Harkin to all 50 states on the progress made to transition individuals out of institutions. 

Key findings:

• In the years since the Olmstead decision, nationally there has been a fundamental rebalancing of spending on individuals with disabilities in institutions as compared to spending on home and community based services (HCBS) that allow Americans to be part of their communities. Between 1995 and 2010, states reduced the share of Medicaid spending on institutions, including nursing homes, mental hospitals, and institutions for people with intellectual and developmental disabilities from 79 percent to 50 percent.

• However, only 12 states spent more than 50 percent of Medicaid LTSS dollars on home and community based care by 2010, and the population of working age Americans with disabilities in nursing homes actually increased between 2008 and 2012. This is true even though 38 studies over the past seven years have clearly demonstrated that providing HCBS is more cost-effective than providing services in an institution.

• Widespread inequities in access to HCBS still exist across states. In 2009, the percentage of spending on HCBS LTSS varied from more than 80 percent to less than 20 percent, and 38 states spent less than 50 percent of LTSS costs on HCBS. Hundreds of thousands of people with disabilities remain on waiting lists for community based services.

• Studies show that from 2000 to 2007, nursing home use actually increased among adults age 31 to 65 in 48 states. Current data shows that there are still more than 224,000 individuals younger than 65 in nursing homes—almost 16 percent of the total nursing home population.

• Perceived uncertainty about the potential total cost of providing HCBS to every eligible individual in the state may be preventing states from exercising new federal options for HCBS. Many states have focused more on enrolling people that are currently living in community settings into HCBS programs than on transitioning individuals living in institutional settings back into the community.

• When individuals are transitioned, it remains unclear whether they are transitioned to the most integrated setting possible or merely to a “less” institutional setting, and each state defines specific settings very differently.

• Many states’ Olmstead implementation efforts have not involved meeting specific benchmarks designed to transition people with all types of disabilities out of institutions and into the most integrated setting consistently in a way that is cost-effective. No clear reporting system for HCBS programs exists to make it possible to analyze and compare how effectively states are meeting the Olmstead mandate.

California Developmental Centers: An Audit

California's State Auditor has issued a report on the state's  developmental centers.  The release:

BACKGROUND

Approximately 1,600 Californians with developmental disabilities reside in and receive medical and other services from one of the California Department of Developmental Services’ (department) developmental centers. Each center develops and maintains policies for identifying and preventing abuse and neglect of residents. Officers from the department’s law enforcement division, the Office of Protective Services (OPS), are on-site at each center and respond to alleged abuse of residents. The California Department of Public Health (Public Health) licenses and certifies the centers as skilled nursing facilities, intermediate care facilities, and general acute health care hospitals. Public Health conducts site visits for required inspections, called surveys, of licensed facilities at each center and investigates complaints involving those facilities. 

KEY FINDINGS

During our review of resident safety at the department’s developmental centers, we noted the following:

• Health care staff did not always promptly notify OPS staff that an incident had occurred—in seven of 60 health care reviews we examined, staff took from two and a half hours to nine days to notify OPS.

• The quality of OPS’s investigative work frequently fell short of its standards, and investigations were not always completed timely. We found, in the 48 OPS investigations we reviewed, that:

 OPS often failed to collect the required evidence during its investigations: OPS did not obtain written declarations from witnesses and the subjects of investigations in 21 cases, did not photograph alleged victims’ injuries in 19 cases, and did not obtain specialized medical examinations for alleged victims of sexual assault in two cases.
 OPS completed only 24 investigations (or 50 percent) within 30 days with three taking 292, 436, and 585 days, respectively, to complete.

• The same investigator conducted both the criminal and administrative investigations in eight cases, even though a 2002 report by the Office of the Attorney General stated that when an incident has both criminal and administrative implications, two separate investigators should conduct separate investigations.

• The department has not addressed longstanding problems, many of which were raised in the 2002 report.

 In the last 10 years, the OPS chief has transitioned six times and the commander in each of the developmental centers have transitioned between eight and 10 times.
 The department has not provided sufficient specialized training to its law enforcement staff.
 Even though OPS has suffered high vacancy rates, the department has no formal recruitment process—in fiscal year 2011-12, OPS had a vacancy rate of 42.8 percent in its law enforcement positions.
 Developmental centers have allowed some employees to work excessive amounts of overtime. Sixty-two health care and OPS law enforcement employees doubled their pay during a five-year period–they were paid nearly $14.1 million in overtime pay and $11.4 million in regular pay.

• While Public Health has conducted most of the federal certification surveys on time for the developmental centers, it did not complete nearly 60 percent of the required state licensing surveys for fiscal years 2005-06 through 2011-12.

• Although Public Health promptly investigated developmental center incidents classified as most serious, we found significant variation in the time it took to initiate investigations for incidents considered to have lower priority.

KEY RECOMMENDATIONS

We made recommendations to the department including that it amend policies and procedures for how OPS conducts investigations and that OPS provide the appropriate specialized training to its law enforcement staff. We also recommended that it promptly address OPS’s high number of vacancies, institute a formal recruitment program, and reassess staffing requirements to minimize the need for overtime. Further, to make certain that residents receive an adequate level of care and are protected from harm, the department should monitor closely the overtime approval process, attempt to cap the number of voluntary overtime hours employees can work, and distribute the overtime more evenly among staff.

Government Spending on Intellectual and Developmental Disabilities

The Wall Street Journal reports:

For the first time in at least 30 years, inflation-adjusted government spending on people with intellectual and developmental disabilities fell in the U.S.

Total spending reached $56.65 billion in the 2011 fiscal year—the most recent total—down 0.2% from the previous year, according to the 2013 State of the States in Developmental Disabilities, compiled by the University of Colorado. About three-fourths is paid by Medicaid.

Most of the spending, 59%, goes to smaller group homes of six or fewer people. About 11.5% is spent by state-operated institutions with 16 or more residents. Settings with seven to 15 people receive about 5% of the funding; large privately run institutions receive 3%.

UNICEF Report on Children with Disabilities

UNICEF has a new report, The State of the World's Children 2013. An excerpt:

Raising children in congregate settings is inherently dangerous. Even in clean, well-managed and well-staffed institutions, children encounter greater risks to their life and health compared to those who grow up in families. Children who grow up in institutions are likely to acquire developmental disabilities, and the youngest among them also face potentially irreversible psychological damage.
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For a child who has already been institutionalized, falling ill can be a death sentence. Staff members at facilities in more than one country have said that children with disabilities are routinely denied medical treatment. Institution staff have also told us – incorrectly – that children with developmental disabilities lack the ability to feel pain. So, in some cases, medical procedures are conducted without anaesthesia. In one facility, children’s teeth were extracted with pliers; elsewhere, children received electro-convulsive therapy with no anaesthesia or muscle relaxants.

Children have been given electric shocks, physically restrained for long periods and isolated with the express purpose of causing pain, on the theory that this ‘aversive therapy’ would extinguish behaviour deemed inappropriate. A teacher in the United States described one girl – blind, deaf and non-verbal – who was shocked for moaning. It turned out she had a broken tooth.

Unfortunately, the report is of very limited usefulness.  It offers few statistics on how conditions have changed over the years, or how different countries compare in the prevalence and treatment of disabilities.  The word autism appears exactly once, in a photo caption.



 

Rotenberg Update

Previous posts have discussed abuse at the Judge Rotenberg Center in Massachusetts.

The Canton Citizen reports:

In testimony submitted to the U.S. Food and Drug Administration, state Senator Brian A. Joyce has requested that the agency ban the use of all graduated electronic decelerators (GEDs), or skin shock devices, which are currently being used to administer electric shocks to disabled children at the Canton-based Judge Rotenberg Center.

The FDA had notified the center in May 2011 that alterations made to the devices required FDA approval. After the JRC failed to adequately respond to the notice, according to Joyce, the FDA sent a second letter in June 2012. When the JRC again failed to comply, the FDA sent a third notice in December 2012, calling for a meeting between the two sides to ensure that the facility ceases use of the non-compliant devices.

Joyce, a longstanding critic of the JRC and its practices, submitted testimony requesting that the FDA forbid the school from using the GED devices on their students from this point forward.

From the Autistic Self-Advocacy Network:

The Alliance to Prevent Restraint, Aversive Interventions, and Seclusions (APRAIS), in collaboration with ASAN and other disability advocacy organizations, has drafted the following letter to the Office of Special Education and Rehabilitative Services, as well as the Centers for Medicaid and CHIP Services and Medicare and Medicaid Services.

As many of our organizations have made numerous requests in the past related to our concerns for the health, safety, and welfare of the young people in the care of the Judge Rotenberg Center in Massachusetts, the undersigned write to you with a renewed call for action; the immediate and complete cessation of funding for the Center considering the US Food and Drug Administration’s recent Warning Letter dated December 6, 2012.

The FDA’s letter dated December 6, 2012—the third warning letter to the Judge Rotenberg Center in 19 months—cites the Judge Rotenberg Center for violations of FDA regulations due to its ongoing modifications to the Graduated Electronic Decelerators. These modifications have consistently increased the allowable voltage used to shock patients. In the hands of Judge Rotenberg Center staff, these GED devices deliver brutal electric shocks to young people. It is important to note that the Judge Rotenberg Center is not only the only facility in the United States to use such a device; the Judge Rotenberg Center is also the sole manufacturer of this machine.

An Incident in Oakland

People with ASD and other disabilities are at great risk of becoming crime victims. The San Francisco Chronicle reports on a 16 year old girl with ASD who left a care home for developmentally disabled youths in Oakland, eluded staff who tried to follow her, and was found assaulted on a bus in San Francisco two days later.

The girl, who has the mental capacity of a 9- to 12-year-old, left the state-licensed Fred Finch Youth Center at 3800 Coolidge Ave. at 7 p.m. Tuesday, Oakland police said Friday. The center specializes in emotionally disturbed and developmentally disabled youths and does not lock its doors, in accordance with federal law.

A Muni driver found her disoriented on a bus at 8 p.m. Thursday, officials said. She was being treated Friday at Highland Hospital in Oakland. Details on her condition were unavailable.v

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The center's CEO, Tom Alexander, said the girl left Tuesday night despite efforts by staffers to persuade her to stay. "We did all that we could to counsel the youngster to return to the agency," he said.

Two staff members "shadowed" her on foot and in a car for about 2 miles, until she reached the Fruitvale BART Station, Alexander said.

BART police stopped the staff members in the car, however, just as they were trying to get a closer look by driving near the platform. The staffers "identified themselves and explained the circumstances - in that very brief time frame, she disappeared," Alexander said.

The article quotes Michael Weston of the California Department of Social Services:

Weston stressed, however, that federal law requires licensed care homes to keep their doors unlocked and prevents them from restraining residents, even children, from leaving.

"If a child was to leave," Weston said, "staff is to redirect them to stay, but they don't have the authority to block them or physically restrain them."

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

Surrendering Kids to the State

Some families of autistic children are leaving Utah.  Others are taking drastic measures. The Salt Lake Tribune profiles ASD teen Garrett Lines, whose mother turned him over to state custody.

There was little progress in Garrett’s ability to learn "frustration tolerance and self-soothing skills," the DCFS report to the judge said, recommending Garrett be taken into state custody and enter residential treatment.

"Alternatives were explored through Nikki’s insurance plan to avoid the need for Garrett to be placed into state custody," the court report said. "Based upon his primary Autism Spectrum Disorder diagnosis, Garrett’s insurance provider will not authorize a higher level of care beyond crisis care stabilization and outpatient therapy."

State custody, the report pointed out, would make Garrett eligible for Medicaid, which covers more extensive therapy than private insurance typically allows.

"In this valley, Medicaid is the window for accessing many of the services that are in place for kids and adults who have developmental disabilities, autism included," said Deborah Bilder, an assistant professor at the University of Utah’s department of psychiatry, who specializes in autism.

"If an individual does not meet criteria for Medicaid, typically because of their parents’ income," she said, "it really restricts the services they can access unless their family is wealthy enough to afford expensive [behavior] therapy."
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Peter Bell, an executive vice president at the national group Autism Speaks, said he isn’t surprised that parents of autistic children in Utah can become desperate enough to turn their son or daughter over to the child welfare system. That’s why the advocacy organization continues to fight for insurance mandates, he said.

"The way you prevent it from happening is you help families get access to the treatment their children need and deserve," he said, adding that many children who receive help early may be able to become taxpayers later.

Troubled Security at CA Developmental Centers

Previous posts have discussed severe problems at state-run institutions.  California Watch reports:

The in-house police force at California’s institutions for the developmentally disabled is searching for a new chief as scrutiny of its work on criminal investigations intensifies.

After two years in the top job, Corey Smith received a demotion to second-in-command for the force, the Office of Protective Services. David Montoya, police commander at the Porterville Developmental Center, is serving as interim chief, according to the state Department of Developmental Services’ website.

The department, which oversees the centers and the police force, has repeatedly hired police chiefs with little to no background in law enforcement.

In its job posting, released Aug. 6, the department said applicants need “extensive management experience directing uniformed peace officers and investigative operations.” However, the posting does not detail how many years of police work or what level of education the next chief must have.

The personnel moves come as state lawmakers last week ordered the California State Auditor to examine the police force’s operations [PDF]. The Office of Protective Services is responsible for protecting nearly 1,700 patients with cerebral palsy, mental retardation and severe autism at five state-run centers in Los Angeles, Sonoma, Orange, Riverside and Tulare counties.

In an ongoing series of stories this year, California Watch has reported that detectives and patrol officers at the institutions routinely fail to conduct basic police work, even when patients die under mysterious circumstances