July 31, 2026

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

Take Action At Home

The House of Representatives is on vacation for the month of August.

The Senate will follow next week, or the week after that, depending...

They will probably be out through September 13, a week after Labor Day.

This is your chance to meet with your representatives in their district offices, and your two senator in their state offices.

Call them, meet with them, attend a town hall, whatever works for your family. Tell them your story. Show them pictures of your loved ones if you can't bring them with you. Ask them to help people with I/DD and autism.

Repeat, as often as you can, until everything has been fixed.

We start this week with another article about the recent reversal of opinion on the Integration Mandate. This piece appears to be less political and more informative than many of the other articles that have come out in recent weeks. Please also see the two related articles from this series, linked below.

What Families Managing a Relative's Disability Care Should Know About the New Federal Reading of Olmstead

By Dorothy Brooks, Medical Daily, July 31, 2025

If you are the person who manages a relative's disability care, the arrangement you have built rests on a legal principle you have probably never had to think about. A federal legal opinion issued in June now questions that principle, and it is worth understanding before anything actually changes.

The Justice Department's Office of Legal Counsel concluded on June 18 that neither Section 504 of the Rehabilitation Act nor Title II of the Americans with Disabilities Act imposes what is known as the integration mandate on states, and that neither statute authorizes federal agencies to impose one. The opinion, signed by Principal Deputy Assistant Attorney General Lanora C. Pettit, was requested by the White House Counsel's Office in February.

Nothing in a family's current services changed on that date. Understanding what could change, and on what timeline, is useful.

What the Integration Mandate Has Meant in Practice

The integration mandate lives in two regulations, one from Health and Human Services and one from the Justice Department, requiring covered entities to administer programs in the most integrated setting appropriate to the needs of a qualified person with a disability. The Justice Department has defined the most integrated setting as one enabling people with disabilities to interact with people without disabilities to the fullest extent possible.

In 1999, the Supreme Court held in Olmstead v. L.C. that unjustified institutional isolation of people with disabilities is a form of discrimination under Title II. Over the following quarter century, that ruling became the backbone of a specific set of expectations: that a person on a waiting list for community services has a claim worth making, that a state cannot default to a nursing facility or psychiatric institution because community capacity is short, and that people at serious risk of institutionalization, not only those already inside one, are covered.

Medicaid is what made it operational. Home and community-based services waivers finance the personal care, day programs, supported employment, and residential supports that let people live outside institutions. The Justice Department's Olmstead enforcement record includes settlement agreements and consent decrees with roughly a dozen states committing to specific deinstitutionalization benchmarks.

What the Opinion Says, and What It Does Not Do

The opinion's core argument is narrow and technical. It contends that Olmstead's actual majority holding was only that unjustified institutionalization can be discrimination, and that the widely cited three-part test for when community placement is required appeared in a plurality section that four justices joined, not five.

From that, the opinion concludes that the two regulations exceed the agencies' statutory authority, and that institutional treatment is discriminatory only where the mere fact of disability, as opposed to the special needs resulting from it, is the sole factor driving the choice of setting. Where a state has any nonarbitrary rationale, the opinion says, the placement is not discriminatory.

The opinion is unusually candid about its own position. It states that this view is out of step with the common understanding of that decision within the federal courts, acknowledges that any final agency action adopting it could be challenged under the Administrative Procedure Act, and notes that a state relying on its reasoning may still face individual Olmstead claims from patients seeking release.

It also has limits. It addresses mental illness and developmental disabilities of the type at issue in Olmstead and expressly leaves the physical disability context for another day.

The opinion has drawn strong objection. A letter signed by 100 lawmakers and led by Sen. Richard Durbin says the opinion represents a dramatic departure from decades of federal law and asks the department to rescind it, with responses requested by August 5.

What Has Actually Changed So Far

One thing has. According to the congressional letter, the Justice Department issued a notice on July 20 stating that the guidance it has relied on for 15 years to enforce Olmstead and the integration mandate is not enforceable, that the department will no longer rely on it in Title II enforcement, and that it plans to revisit the guidance.

That is a change in federal enforcement posture, not in law. The regulations themselves remain in effect and would require formal rulemaking to rescind. Existing consent decrees and settlement agreements are court-supervised or contractual and do not evaporate because an executive branch office reinterprets a statute. State laws and state Olmstead plans are separate obligations. Private plaintiffs can still bring claims, as the opinion itself concedes.

The realistic near-term effect is on new federal investigations and new enforcement actions, which is a slow-moving lever that families would feel indirectly and gradually, if at all.

What This Could Eventually Mean for a Family's Options

The honest answer is that it depends almost entirely on what states do, and most states have not said anything yet.

If federal enforcement pressure recedes, the states most likely to change course are those already struggling with community capacity, long waiver waiting lists, and direct support workforce shortages. The mechanism would not be an announcement that community services are ending. It would look like slower waiver enrollment, more restrictive eligibility determinations, less pressure to move someone out of a facility placement, and less leverage for a family arguing that an institutional placement is inappropriate.

Conversely, many states have their own statutes, Olmstead plans, and consent decrees that continue regardless, and several have built community systems cheaper than institutional care.

The people most exposed are those in the least stable positions: individuals currently on waiver waiting lists, people in short-term facility placements awaiting a community opening, families in states with thin provider networks, and adults whose aging parents are trying to arrange a placement before they can no longer provide care themselves.

Continued

Read the first article in this series from July 13, "Some Family Caregivers Could Lose Up to $20 an Hour Under Medicaid Payment Changes" here

Read the follow-up story from August 5, "Congress Sets Today as the Deadline for Justice Department Answers on Its Disability Care Opinion" here

The following article came to us from our friends at Together for Choice:

For Some Adults With Profound Autism, Medicaid’s ‘Community’ Housing Rule Has Led to 911 Calls and ER Visits

Pennsylvania and Kentucky are among the states that enforce restrictive housing policies that can push adults with profound autism into group homes that are unsafe for them and others. A 2014 Medicaid rule intended to integrate adults with autism into community settings is partly to blame, according to experts who said they want the rule rescinded. Advocates also lamented the growing demand — and short supply — of appropriate housing.

By Suzanne Burdick, Ph.D., The Defender, August 4, 2026

Caroline Pierce, a Kentucky adult with profound autism, was forced to move from a campus-based home where she was thriving into a group home. Since joining the state’s group home system, she’s sustained 134 unexplained injuries — including bruises, scratches and a black eye, said her mother, Ann Jeanette Pierce, in a Jan. 14 video.

In Pennsylvania, Matt and Dan Guerrisi — adult twin brothers with profound autism — were forced to move from a residential farmstead for youth with intellectual and developmental disabilities, where they were happy, to group homes where they destroyed property and hurt themselves and others — actions that led to multiple police calls and emergency room visits.

Dan bashed his head so forcefully and often that doctors worried he had given himself a concussion, the Philadelphia Citizen reported. Meanwhile, staff injuries included brain damage, broken bones and bites that required more than 20 stitches.

Caroline, Matt and Dan’s experiences stem largely from the fact that Kentucky and Pennsylvania severely limit the types of housing eligible for reimbursement under Medicaid Home & Community Based Services (HCBS) waivers, according to Ashley Kim Weiss, executive director of Together for Choice.

Many families rely on HCBS waivers to help pay for housing services for their adult child with autism, Weiss explained. But it’s nearly impossible for adults with autism in these states to use Medicaid waivers for alternative living communities, farmsteads, assisted living communities, or neighborhoods designed for people with intellectual and developmental disabilities.

The result is that adults with profound autism are pushed into group homes that may not be well suited to care for them and handle their unique needs, Weiss said.

‘We can measure community differently’

Part of the problem stems from how states like Kentucky and Pennsylvania interpret a Centers for Medicare & Medicaid Services (CMS) rule, finalized in 2014, that governs eligibility for HCBS funding waivers, Fogel said.

The rule sounds good on paper, Weiss said. It talks about ensuring that people with intellectual and developmental disabilities are integrated into the broader community, rather than segregated or isolated in institutions for the mentally ill.

“We do believe in the spirit of the settings rule, but the result has really hurt a lot of people,” she said.

The rule spells out specific settings whose physical locations are deemed too institutional, isolating or segregated — in other words, not community-integrated — to receive HCBS waiver funding.

The problem is that under the rule, some settings that really work for adults with profound autism are categorized as segregated or isolating.

Read the full article here

Related article:

Testifiers detail need to bolster adult transition services for students with disabilities

News release from Pennsylvania House, August 4, 2026

As students living with intellectual or developmental disabilities prepare to leave school, many families believe the same level of support will be offered after graduation. But for many reasons, that is not reality. The House Majority Policy Committee traveled to Phoenixville on Tuesday for a tour and roundtable discussion to identify needs and solutions as it relates to young people with disabilities transitioning out of school years and into adult life.

“Today’s roundtable is about finding ways we can fundamentally fund opportunities for young people with disabilities to transition into adulthood and safely integrate into their communities. It’s important that we give every kid and adult a setting that best fits their situation,” said Rep. Paul Friel, (D-Chester), who co-hosted Tuesday’s roundtable. “Not only should we be making settings like this more accessible to people under 21, but to those who have entered adulthood as well.”

The Policy Committee visited The Camphill School Transition Program at Beaver Farm, a 133-acre farm in Phoenixville that helps students with intellectual and developmental disabilities ages 18-22 enter into adult life. Through a 40-week residential program or a day program for local students, The Camphill School offers craft and prevocational training to help students develop skills, social relationships and the tools they need to navigate their community. Students live and work alongside staff members throughout the program. This helps give students a strong sense of community while helping them thrive with hands-on learning in both work and home settings.

“I’ve been a part of this issue for the eight years I’ve been in office. I’m a big believer in the work that’s done here at The Camphill School and really want to see more communities have access to programs like these,” said Rep. Danielle Friel Otten (D-Chester), who co-hosted Tuesday’s roundtable. “It’s my goal to make sure communities like this are part of our system of care in Pennsylvania.”

Due to Pennsylvania law, students with disabilities must graduate from their program the day before they turn 22, regardless of where they are in the program. They’re then left to live with family or find unlicensed residences, community homes, or other supported living facilities, many of which cannot offer the same level of services as settings like The Camphill School. Parents of students at the school recommend a change in state law to allow students to stay in school to finish out their program.

“My boys had the support, the love, and the services they needed to thrive. The day after their 22nd birthday, everything changed. We followed the state’s regulations and were forced to put them into group homes. After 5 different group homes in three years that featured law enforcement and ambulance rides, we realized we had no place for them,” said Jody Weaver, who’s twin boys attended The Camphill School. “Our kids have little to no choice and we need to do something for them.”

In Pennsylvania, The Camphill School is classified as an Intentional Community and Farmstead, which is considered as an isolating setting that removes people from society and community, meaning the state Home and Community Based Services (HCBS) program will not fund them. But other states like Vermont, Massachusetts, and California have all experimented with work-life communities that can receive state funding. Pennsylvania also prohibits people with disabilities from living next to each other. Those are a few of the reasons there aren’t many settings like The Camphill School available in Pennsylvania, but it’s something stakeholders agree should change.

Continued

Opinion - Employment First Should Not Mean Employment Only

Washington’s adult disability system was built with good intentions. For thousands of families, it isn’t enough. 

One of the unexpected joys of hosting The Lighter Side of the Spectrum podcast is discovering people who have quietly become experts simply because they refused to stop asking questions.

Angela Acres-Castro is one of those people.

Like countless parents across Washington, Angie was focused on helping her son, Miles, build a meaningful adult life. Miles is 22 years old. He has profound autism, intellectual disabilities, and epilepsy. Like every parent, Angie wants her son to have purpose, friendships, opportunities to learn, and somewhere meaningful to spend his day.

Instead, she found herself asking a question that thousands of families have asked before her.

Why are there so few options?

The answer led her down a path she never expected. She began reading legislative reports, digging through state policy, and learning how Washington’s adult disability system evolved over the last two decades. What she discovered surprised her. As Angie recently wrote:

“While digging through old laws and legislative reports, I discovered something I didn’t know. We used to have a meaningful Day Habilitation program.”

Most people assume that if something as fundamental as daytime services disappeared, it must have happened because no one needed them anymore. The record suggests otherwise.

A Policy Built on Good Intentions

Beginning in the early 2000s, Washington embraced what became known as Employment First. The philosophy is admirable. People with intellectual and developmental disabilities should not automatically be separated from the workforce simply because they have disabilities. If someone wants to work and can succeed with the right supports, employment should absolutely be an option.

In 2004, Washington adopted the Working Age Adult Policy. By 2006 it had been implemented statewide, making employment the primary focus of adult developmental disability services. In 2012, Employment First became state law.

For many people, this has opened doors that never existed before. But good policy can still create unintended consequences.

As Angie explained:

“The problem is that many of these policies were developed by people who may have had the best intentions but didn’t have to live with the consequences every single day.”

That distinction matters, because people with physical, intellectual or developmental disabilities are not all the same. Some thrive in competitive employment. Some work successfully with supported employment services. Some volunteer or work part-time. And some, because of significant intellectual disabilities, medical conditions, behavioral challenges, communication disabilities, or complex support needs, are simply not going to succeed in competitive employment. Those individuals deserve meaningful lives too.

The Gap Families Have Been Describing

Washington’s own Department of Social and Health Services now acknowledges much of what families have been saying for years. Its 2024 Day Habilitation report describes adults who age out of school only to discover there are few meaningful daytime options if employment is not realistic. The report identifies needs that go far beyond having a place to spend time.

Families described wanting opportunities for learning, community participation, recreation, volunteering, friendships, life skills, communication support, and simply belonging. In other words, they described exactly what most of us hope for in our own lives.

The report also identified one of the greatest unmet needs: structured, center-based day habilitation services for adults who live with their families and need ongoing support. This isn’t a hypothetical problem. It is documented by the state itself.

The Population Isn’t Getting Smaller

Sometimes discussions about autism become trapped in conversations about diagnosis rates. That’s almost beside the point. Regardless of whether Washington’s prevalence exactly matches the national average, the state is already home to tens of thousands of autistic children and adults, and those children grow up.

Every year, another group of young adults leaves special education and enters the adult service system. Unlike schools, adult disability services do not graduate people after four years. Support needs accumulate, and many adults with significant intellectual and developmental disabilities will require some level of assistance for decades.

That means today’s service gaps become tomorrow’s larger crisis unless we address them now.

Employment First, Not Employment Only

This is where I think the conversation has gone off course. Supporting employment is good public policy (of course).

Restricting meaningful daytime services to employment alone is not. Those are two different ideas.

Parents are not asking Washington to abandon employment. They are asking Washington to recognize reality: some people will work, some cannot, and some need both employment and day habilitation.

Some need community access.

Some need highly individualized programs. Real inclusion means building a system flexible enough to serve all of them.

One size has never fit everyone. It doesn’t fit here either.

Continued

Georgia budget rules could leave thousands of special-needs residents without care

By Abby Kousouris, WTOC News, August 4, 2026

Flat-funding guidelines for future Georgia budgets have ignited a sharp debate at the state capitol as disability advocates warn that thousands of vulnerable Georgians will be left without care.

Advocates argued that the new budget directives lock in previous cuts to vital Medicaid waivers, keeping approximately 8,000 people stranded where they already are on the state’s waiting list.

According to D’Arcy Robb with the Georgia Council on Developmental Disabilities, more than 1,200 of those individuals are in urgent need of services.

“When they turn 22, we talk about the cliff, because it feels to our folks like a cliff. And we hear about the ‘couch kids,’” Robb said. “People literally sit at home all day on the couch.”

For families on the waiting list, the lack of support has turned daily life into a grueling waiting game.

Lerone, a 28-year-old Georgia resident who has Down syndrome, relocated from New York after his mother passed away.

His 74-year-old aunt and caregiver, Nina Howard, took him in, but said her 18-month struggle to secure a state Medicaid waiver has taken a severe toll.

“It’s affected my mental health,” Howard said. “I wake up in the middle of the night, between two and four, saying, ‘What is today going to bring?’”

Without the waiver, Lerone is unable to access professional care or community programs, spending his days sketching the friends he left behind. Howard added that she is terrified of who will protect Lerone when she is no longer able to care for him.

“I just hope that tomorrow will be brighter,” Howard said. “Not just for me, and for him, but all the other families.”

Under Gov. Kemp, the state has increased the number of waivers by 1,688 slots through an $81 million investment, according to the governor’s office.

The governor’s office stated that the primary obstacle is a shortage of service providers to fill existing slots, which prompted the state to invest an additional $124 million to raise provider reimbursement rates.

Camille Taylor, spokesperson for the Department of Behavioral Health and Developmental Disabilities, said the department will submit budget information that complies with the instructions, though it is too early to comment on what will be included in the September submission.

State agencies are currently preparing their budget submissions for the upcoming fiscal year to comply with the Governor’s flat-funding guidelines. Disability advocates plan to continue pushing state leaders to fund additional waiver slots before final budget hearings begin.

Read the full article here

California - Advocates push for changes to developmental disability proposals in Legislature     

By Sofiia Williams, The Sacramento Bee, August 6, 2026

A hearing addressed three legislative proposals made in the May revision of California’s budget and deferred for further deliberation. Legislative officials, legal experts and community members offered testimony on the proposals in the Assembly Subcommittee on Human Services.

The proposals would overhaul a state assessment for developmental disabilities, impose caps on residential treatment programs and strengthen community transition after leaving them.

New assessment for developmental disabilities

The first proposal would establish the Equitable and Consistent Needs Assessment. The new assessment would standardize the criteria used to evaluate eligibility for disability services and the tools used to conduct needs-based assessments of individuals who qualify for services said Karina Hendren, a fiscal and policy analyst with the California Legislative Analyst’s Office.

Since 1969, all Californians with developmental disabilities have been entitled to these services under the Lanterman Developmental Disabilities Services Act. However, advocates of the deferred proposal say the current metrics for eligibility must be updated because they allow for variation in regional centers’ intake criteria.

“We know what we spend, but this is our opportunity to move beyond using purchase of service as a proxy for needs and move into a future where we can understand what people’s unique needs are (and) whether those needs are met or unmet,” said Christine Bagley, branch chief of the California Department of Developmental Services’ statewide clinical services division.

Charlene Harrington, a professor emerita of social and behavioral sciences at the University of California, San Francisco, said her research studies of the DDS found “very wide” inequities in the allocation of disability services between racial and ethnic groups. For these reasons, Harrington said, updated evaluation criteria are necessary.

“DDS should use assessment data for allocating budgets and resources based on client needs,” Harrington said. “It must also … provide additional staff education and training and improve the oversight of regional center decision-making processes and practice reports.”

Opponents say it could limit access to disability services for individuals across the state. Fernando Gomez, co-founder of Integrated Community Collaborative and vice president of Disability Voices United, urged legislators to more carefully scrutinize the proposed standards before replacing the current assessment, the Client Development Evaluation Report.

“While (CDER) should certainly be modernized, shouldn’t we first determine whether it can be improved before replacing it with a new system whose consequences remain unknown?” Gomez said.

Continued

Nearly 2,500 Hoosiers with special needs face cuts to their care as denials of Indiana Medicaid waivers spike

By Cierra Putman, WTHR, July 30, 2026

Thousands of Hoosiers with special needs may soon be cut off from critical therapies and supports. 13 Investigates confirmed Indiana denied more than 700 people who are already enrolled in or applying for the Medicaid waiver program following the rollout of new enrollee assessments earlier this year. The state confirms about another 1,700 denials are under review.

The state says the new assessments are "scientifically developed" and replace the old evaluation, which was "not designed to evaluate youth and did not sufficiently capture an individual's current needs." With the old assessment, FSSA had/reported a denial rate of about 1%. 13 Investigates learned the state evaluated 15,476 people during the first six months of 2026 with the new assessments and denial rates increased to between 5% and 16%.

Several families and advocates told 13 Investigates they fear the new assessments are removing people who rely on the program to live a safe and enriching life.

Johanna's story

Indiana’s Family and Social Services Administration confirms the majority of the 772 denials, 562 impacted adults like Johanna Laut of Indianapolis.

The 39-year-old has autism and developmental delays. Because of her disability and the level of care she needs, Johanna’s mother tells 13 Investigates she received a Medicaid waiver in the 2000s.

"She's more like a young girl,” Renee Stout said.

Johanna’s childlike nature is apparent upon meeting. She immediately started talking about her love of dolls, Pokémon and Christmas music. Everyone she meets is a potential new friend. Stout describes Johanna as having the maturity of a preteen.

Her mother and stepfather say her trusting nature puts her at risk.

"She is vulnerable in every way — sexually, financially, emotionally, physically,” Stout explained.

Advocates tell 13 Investigates that most people who receive a waiver remain in the program and receive support for the rest of their lives.

So, it was a shock when the family received a notice of action from the state in June stating Johanna was no longer eligible for the program.

“She hasn't changed since the last assessment a year ago,” Stout said. “Everything about her is the same. So, it's the assessment that changed.”

Starting in January, Indiana rolled out three new assessment forms for case managers to use when evaluating Medicaid enrollees. The answers determine if a person's disability is severe enough to qualify for the waiver, which provides access to additional supports including funding for therapies and in-home nursing care.

Continued

Maine DHHS should pause Lifespan Waiver - Opinion  

By Cullen Ryan and Valeria Landry, Portland Press Herald, July 31, 2026

The Maine Department of Health and Human Services (DHHS) is seeking federal approval of a sweeping new Medicaid waiver program called Lifespan. Medicaid waivers enable individuals with intellectual and developmental disabilities (I/DD) to receive services in the community rather than in institutions. Lifespan is intended to make it easier and more seamless for individuals to obtain services beginning at age 14.

The goals are laudable. As proposed, Lifespan will not achieve them.

Lifespan will make it more difficult for individuals and families to understand, access and navigate services. It is unnecessarily complicated and increases administrative burden. Its financial underpinnings are unclear, if not questionable. And it layers an extensive new initiative atop a fragile foundation.

This is why we — the Maine Developmental Services Oversight and Advisory Board — have asked the department to pause submission of the Medicaid waiver applications. Instead, key parties should be involved in the design, not simply invited to comment after the fact. With that approach, a new administration and legislature would have the benefit of an initiative with greater likelihood of success and broader support.

This is not an 11th-hour critique. Concerns have been conveyed at many forums, meetings, and in writing. This includes written comments submitted to DHHS during the recent 30-day notice period. Because the department does not make these comments public, it is difficult to know the extent of concerns.

Here are a few examples.

Bad timing: It is unwise for the administration to seek approval for this major redesign just months before it departs. The incoming administration and legislature immediately will face a barrage of concerns while dealing with looming cuts to Medicaid — Lifespan’s funding source. This sets the stage for a chaotic and disruptive implementation, not to mention potential legal challenges.

Confusion: Despite efforts by department staff to explain the initiative, it is safe to say that many well-informed stakeholders do not understand it. Lifespan is unnecessarily complex, without a clear path for successful implementation or sustainability. The fact that it is modeled after programs in Tennessee and, more recently, Mississippi and Alabama may be a factor in the disconnect.

Impact on individuals and families: Many individuals will face a difficult choice to either stay in their shrinking, existing program or transition to a new, untested one. Individual funding ranges will be based in part on functional assessments conducted remotely by Maximus a multibillion-dollar, for-profit government contractor. And just as individuals and families attempt to navigate this new program, Lifespan eliminates individual choice of case manager.

System inadequacy: Service providers already are struggling. Due to inadequate reimbursement and workforce shortages, many long-standing nonprofits have curtailed services. Lifespan exacerbates the problem by imposing even more complicated requirements. The department recently terminated funding for several relatively new providers for health and safety reasons. More closures are expected. The insufficient supply of stable, long-term, experienced, licensed service providers is of extreme concern and must be addressed in any service redesign. It is not clear if, or how, Lifespan does so.

Insufficient capacity at DHHS: We recognize and appreciate the hard work of department staff. In our view, however, the department lacks capacity to undertake such a seismic change given its many complex existing and emerging challenges.

Insufficient groundwork: Lifespan expands eligibility for services beginning at age 14. This requires close coordination between DHHS and other state agencies — something not well-established now. Expectations for coordination should be assessed and developed as part of the design, not after authorization.

Unclear financial modeling: The financial model leaves many questions unanswered. How will Lifespan be funded over the long term? How will funding Lifespan affect existing services? How will Lifespan affect a service network contracting due to inadequate resources? What data supports the claim that “natural supports” will reduce funding needs? At the least, a presentation of a robust financial model for both stakeholders and lawmakers is needed — prior to seeking federal approval.

It has been suggested that stakeholders ought not worry — that Lifespan can be modified during rulemaking. This is inaccurate. The applications contain hundreds of pages of detail. It is unrealistic that the many issues could be resolved in the time between federal approval, rulemaking and implementation. These core issues can and should be addressed before Maine seeks federal approval.

Continued

We often hear the political meme from advocates about "re-institutionalization", making it sound as though they will be forced into Intermediate Care Facilities (ICFs). The truth is, states are unlikely to force anyone into an ICF - they are reluctant to even accommodate those who have requested ICF care. The reality is that people who lose group home services are often forced into nursing homes, not ICFs.

Illinois - Disability advocates march on Gov. JB Pritzker’s office demanding more alternatives to nursing homes  

By Evgenia Anastgasakos, The Chicago Tribune. August 5, 2026

Advocates urged the state to invest in community-based alternatives to nursing homes for people with disabilities before attempting to enter Gov. JB Pritzker’s Chicago office in the West Loop on Wednesday.

More than a dozen activists, mostly those in wheelchairs and on mobility scooters, raised a chant of “let us in” as they blocked the building’s doorway at 555 W. Monroe St. Illinois State Police pushed back, telling the crowd to leave.

The standoff lasted more than 20 minutes until a representative from Pritzker’s office arrived to speak with Jose Ocampo, one of the advocates, in the building’s lobby.

“I said, ‘I’ll give you two weeks, and if we’ve not heard from you, we’ll be back,’” Ocampo said when he returned to address the protesters.

Members of the Humanize Long Term Care campaign say they’ve been trying to secure a meeting with Pritzker since April, even hand-delivering letters to both his Chicago and Springfield offices.

Representatives from Pritzker’s office didn’t respond to a request for comment Wednesday afternoon.

The campaign is demanding a statewide “Freedom Fund,” which would designate $40 million for housing assistance for individuals transitioning into community housing from long-term care facilities. The program would be funded by an increase in the state real estate transfer tax.

“All we want is to have the freedom to decide to live in the community,” Ocampo said.

Advocates say that, even with housing assistance, community-based care would cost roughly $10,000 to $30,000 less per person each year than institutional care. A 2023 study by the Center for Medicare and Medicaid Services found that home- or community-based services cost on average $37,000 less per person than institutional services.

Members of the campaign allege that the state is failing to meet its obligations under the Colbert and Williams consent decrees, two Illinois court settlements that required the state to transition eligible institutionalized adults into community-based settings.

“Living in the community is the best option for people like myself,” said Ebony Payne, who recently moved from an institution to her own apartment in Woodlawn.

Payne, 43, said she was in and out of nursing homes for more than 20 years. She said the experience was isolating, “looking at four walls all day.” And, because residents often live in close quarters, Payne said the institutions could be like “petri dishes” with illnesses like COVID-19 and the flu spreading rapidly.

Last year, Illinois’ nursing homes were ranked among the worst in the nation, based on federal reports of health inspections, staffing and other quality measures. Residents reported unhygienic conditions, with rodents, mold and delayed care. Early this year, two deaths at Chicago-area nursing homes prompted lawsuits against the facilities.

Read the full article here

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S.4889 - Sen. Tim Kaine (D-VA) - The Supporting Our Direct Care Workforce and Family Caregivers Act - A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers. 



H.R.6137 / S.3211 - Rep. Brian Fitzpatrick (R-NJ) and Sen. Maggie Hassan (D-NH) - Recognizing the Role of Direct Support Professionals - A bill to require the Office of Management and Budget to consider revising the Standard Occupational Classification system to establish a separate code for direct support professionals

H.R4849 / S.2556 - Rep. Adam Grey (D-CA) and Sen. Chuck Schumer (D-NY) Protecting Health Care and Lowering Costs Act of 2025 - To repeal health-related portions of An Act to provide for reconciliation pursuant to title II of H. Con. Res. 14 (Public Law 119-21, The One Big Beautiful Bill Act)

H.R.8736 - Rep. Glenn Grothman (R-WI) - Restoration of Employment Choice for Adults with Disabilities Act - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities. 

H.R.6766 / S.3492 - Rep. Claudia Tenney (R-NY) and Sen. Richard Blumenthal (D-CT) - Essential Caregivers Act - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any period in which regular visitation is restricted.

H.R.4796 - Rep. Laura Friedman (D-CA) - Restoring Essential Healthcare Act -To amend Public Law 119-21 (The One Big Beautiful Bill Act) to repeal the prohibition on making payments under the Medicaid program to certain entities.

H.R.4807 - Rep Greg Landsman (D-OH) - Protect Our Hospitals Act - To amend Public Law 119-21 to repeal certain changes to provider taxes under the Medicaid program. 

H.R.1262 & S.932 - Rep. Michael McCaul (R-TX) and Sen. Markwayne Mullin (R-OK) "Give Kids A Chance Act" - To amend the Federal Food, Drug, and Cosmetic Act with respect to molecularly targeted pediatric cancer investigations. This bill would renew research into pediatric cancers and includes increasing funding for rare diseases, some of which cause Intellual and developmental disabilities and autism.  

H.R.1509 & S.752 - Rep. Lori Trahan (D-MA) & Sen. Chuck Grassley (R-IA)

Accelerating Kids' Access to Care Act -

This bill would amend titles XIX and XXI of the Social Security Act to streamline the enrollment process for eligible out-of-state providers under Medicaid and CHIP, and streamline enrollment under the Medicaid program of certain providers across State lines.

H.R.2598 & S.1277 - Rep Jared Huffman (D-CA) and Sen Chris Van Hollen (D-MD) The IDEA Full Funding Act

To amend part B of the Individuals with Disabilities Education Act to provide full Federal funding of such part.

S.2279 - Sen. Josh Hawley (R-MO)

A bill to repeal the changes to Medicaid State provider tax authority and State directed payments made by the One Big Beautiful Bill Act and provide increased funding for the rural health transformation program.

H.R.1950 - Rep. Mark Pocan (D-WI) - Protect Social Security and Medicare Act

To protect benefits provided under Social Security, Medicare, and any other program of benefits administered by the Social Security Administration or the Centers for Medicare and Medicaid Services. 

S.779 & H.R.1735 - Sen. Alex Padilla (D-CA) & Rep. August Pfluger (R-TX)

To amend title XIX of the Public Health Service Act to provide for prevention and early intervention services under the Block Grants for Community Mental Health Services program

H.R.2491 & S.1227 - Rep Kat Cammack (R-FL) & Sen. Edward Markey (D-MA) - The ABC Act

To require the Administrator of the Centers for Medicare & Medicaid Services and the Commissioner of Social Security to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs



VOR OPPOSES:

H.R.2743 & S.1332 - Rep. Bobby Scott (D-VA) & Sen. Bernie Sanders (I-VT) Raise the Wage Act - A bill to provide increases to the Federal minimum wage and for other purposes. VOR opposes the provision in this bill that would phase out section 14(c) and sheltered workshops for individuals with I/DD and autism.

S.2438 - Transformation to Competitive Employment Act (Sen. Chris Van Hollen (D-MD) - A bill to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support people with disabilities through competitive integrated employment, to phase out the use of such special certificates, and for other purposes. 

H.R.9401 / S.4865 - Rep. Steve Cohen (D-TN) & Sen. Michael Bennet (D-CO) The Latonya Reeves Freedom Act of 2026 - A bill to prohibit discrimination against individuals with disabilities who need long-term services and support. The bill is "softer" than in previous years, yet still biased against institutions (without specifying ICFs) and fails to acknowledge the importance of ICFs and SNFs in a full continuum of care. 

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