April 17, 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.

Rosemary Ann Sciarrillo

March 13, 1955 - April 13, 2026

It is with deep sadness that we share the news that the sister of our President, Joanne St. Amand, passed away this week.

Rosemary Ann Sciarrillo passed away on Monday, April 13 at her home at the Green Brook Regional Center with her brother and sister at her side.

Rosemary lived with her family until she was 20 years old. After that she lived at the Woodbridge Developmental Center until it closed in 2014, and then Green Brook Regional Center until her passing.

Although born profoundly intellectually disabled with Shaaf-Yang Syndrome, Rosemary lived a full and happy life at both NJ Developmental Centers where she had many friends and devoted caregivers. She attended daily programs, parties, trips to the mall, movies, cultural events, and many more outings too numerous to mention.

Rosemary was predeceased by her parents Geraldine and Benjamin Sciarrillo. She is survived by her brother Anthony Sciarrillo and his wife Mary, and her sister Joanne and her husband Robert St. Amand, and numerous aunts, uncles, cousins, nieces, and nephews.

The family sincerely thanks Dr Krishna Patel, the medical staff, the entire administration and the amazing caregivers at Green Brook Regional Center and previously, the staff at Woodbridge Developmental Center who took wonderful care of Rosemary and allowed her to enjoy life to the age of 71 when she was not expected to live past her teenaged years.

In lieu of flowers donations may be made to: VOR, a Voice of Reason, 836 S. Arlington Heights Rd. 351, Elk Grove Village, IL 60007. Please add: In honor of Rosemary Sciarrillo to your donation.    

Rosemary's obituary may be seen here

Last year, Joanne wrote an article for the VOR Voice entitled "Why Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) should remain open and why an ICF is the best option for my sister, Rosemary..."

We have reprinted the article on our website here. We hope you will read it and share it with others.

VOR's 2026 Legislative Initiative

June 8 - 10

Washington D.C.

We are proud to announce that we will be returning to Capitol Hill this June.

This is your chance to share with members of Congress about the issues that affect us, as families of individuals with I/DD and autism.

We have a limited number of hotel rooms available, at the ridiculously low price of $170 per night for a single room at the Placemakr Dupont Circle,

located in the heart of DC's historic Dupont Circle neighborhood.

Our room count is filling fast, so

Please register for the Initiative now to reserve your room

Unable to join us in D.C. this year?

You can still help by becoming a sponsor!

Every year, VOR members go to Washington, D.C. to speak our truth to power.

This year, we are speaking to:

• Support the ICF system as part of a full continuum of care
• Recognize the importance of Direct Support Professionals (DSPs)
• Support Family Caregivers
• Call for accountability in the Protection and Advocacy System, and re-focus their mission to protect all people with I/DD and autism
• Amend or eliminate the Settings Rule
• Recognize the need for efficient and effective services to meet the needs of individuals with co-occurring I/DD and severe mental illnesses (SMI)
• Supporting all employment opportunities for people with I/DD and autism.

This year, we ask our sponsors to participate as they can.

Diamond - $ 5,000

Platinum - $ 2,500

Gold - $1,000

Silver - $ 500

Bronze - $ 250

Advocacy Hero - $ 100

Friends & Families - (Other amounts)

Any and all gifts are welcome.

Donors will be acknowledged at the Annual Meeting and in the VOR Voice

A well-written, well-researched, and well-produced presentation on Sheltered Workshops and 14(c). We encourage our members to watch the full video.

The wages are subminimum. But is the offer of something more?    

By jingnan Peng, The Christian Science Monitor, April 17, 2026

In the United States, tens of thousands of people diagnosed with intellectual disabilities work in “sheltered workshops,” performing simple manual tasks and paid based on productivity. More than 30,000 sheltered workshop workers earn less than the federal minimum wage of $7.25, according to the Department of Labor. Nationwide, the workers' average wage is around $4 an hour. 

Critics say such workers are treated as “less than,” and may even face abuse. About a third of states have banned subminimum wages for disabled workers. 

“I felt – my whole family felt – I could do so much more than what I was doing,” says Carrie Varner, a disability activist diagnosed with autism, of her time in a sheltered workshop in Minnesota in the late 2000s.

Others supply a different view. While workshop organizers are required to arrange annual information sessions for each worker to learn about regular employment, few show interest in such work, says Kit Brewer, who leads an advocacy group in support of sheltered workshops.

To proponents, the workshops offer a sense of purpose to a small population that often lacks realistic paths to employment, and may be isolated or preyed on in the general community. A study on two states that ended sheltered workshops found that most workers ended up unemployed.

In July 2025, the Department of Labor under President Donald Trump withdrew a Biden-era proposed rule to end subminimum wages for disabled workers nationwide. And some sheltered workshops are exploring new ways to serve their attendees, offering a mix of minimum-wage work and classes that teach skills for more traditional employment.  

Read the full article, and watch the video here

Family Caregivers Provide Over $1 Trillion In Care Annually

By Shaun Heasley, Disability Scoop, April 13, 2026

Family and friends provide billions of hours of mostly unpaid care for adults with disabilities and complex medical conditions across the U.S. A new report finds that the value of such care tops all Medicaid spending.

There are an estimated 59 million family caregivers providing 49.5 billion hours of care over the course of a year, according to findings from a report released recently by AARP.

Researchers assessed the value of this care at current market rates. On average, they found that caregivers earn $20.41 per hour, putting the total value of the work provided by family caregivers at $1.01 trillion.

That figure is more than all federal, state and local governments spent on Medicaid in 2024, the report notes. It’s also more than private businesses spent on health care that year.

“This new report confirms what we have long known. Family caregivers are holding up a system that Americans nationwide rely on every day, but at a cost,” said Dr. Myechia Minter-Jordan, CEO of AARP. “Behind these numbers are people paying an emotional toll and a financial one. Caregivers are stretching their finances, sacrificing their own well-being, and too often, they are doing it alone.”

The report notes that most long-term services and supports in the U.S. are provided by family caregivers, almost entirely unpaid. This can include everything from tasks of daily living like dressing, toileting and transportation to complicated medical and nursing tasks and coordinating medical and social services.

The value of family caregiving has grown almost three-fold since AARP began tracking it in 2006, the report shows, largely due to increased pay in the field.

Continued

How The Trump Administration Is Blocking Access To Home Care

By Howard Gleckman, Forbes,. April 16, 2026

One of the Trump Administration’s most glaring contradictions is this one: Top officials repeatedly promise to give consumers maximum choice in the care they receive. Yet, the same people are making it harder than ever to access one form of care overwhelmingly chosen by older adults, younger people with disabilities, and their families: home-based care.

The White House is doing this in multiple ways: including by sharply limiting the supply of care workers though its restrictive immigration policies and by deeply cutting Medicaid, including by directly slashing federal payments for home and community-based services.

Those Medicaid cuts are happening in two ways. Last summer, Congress passed a law that will result in more than $1 trillion in Medicaid cuts over the next 10 years. Then, in the name of reducing alleged fraud, the Trump Administration took steps to immediately withhold or demand repayment of hundreds of millions of additional Medicaid dollars from mostly Blue States.

The Impact Of Immigration Curbs

Start with President Trump’s aggressive efforts to slash immigration and deport current foreign-born workers, even those who have been here legally. That adds to an already-existing shortage of direct care workers which harms people living at home and in facilities.

Prior to Trump’s crackdown, about a third of care workers were immigrants. It is impossible to know how many aides, nurses, and companions have left their jobs due to these restrictions. But home care agencies and families report it is harder than ever to find staff. 

Those they can hire are more costly than ever. In 2025, families paid an average of $35 per hour for a home care aide hired through an agency, and often are required to pay for a minimum of four hours for each visit.

Assaulting Medicaid

The aide shortage also raises costs for Medicaid, the largest payer of long-term services and supports. And that’s happening as the federal government is taking multiple steps to slash program funding.

A quick bit of background: Medicaid is operated by the states but overseen by the federal Centers for Medicare and Medicaid Services. CMS sets the overall rules but states can apply for waivers from some regulations.

One very important rule: States must provide Medicaid long-term care in nursing homes. They can request waivers to offer home and community-based care as well, and every state has. About two-thirds of those who are receiving Medicaid LTSS benefits live in the community and not in nursing facilities.

But home-based support is not required and, unlike nursing home care, states can cut or even drop those home-based services.

In 2025, Medicaid spending exceeded $900 billion, with the feds paying about two-thirds of all costs. The program spent more than $200 billion on long-term services and supports alone, both in the community and in nursing homes.

The Big Beautiful Bill

But last summer’s big budget bill made deep cuts in all of Medicaid.

It limited access to the program by imposing new work and paperwork requirements for beneficiaries. People will need to prove their eligibility at least twice a year.

Those tough new rules will not only limit access to care for older adults and people with disabilities, they also could end Medicaid benefits for some family members who leave their jobs or reduce their work hours to care for relatives.

The measure also directly cuts the federal contribution to Medicaid for states that expanded the program under the ACA. And it will limit the ability of states to increase their Medicaid budgets by imposing taxes on providers such as hospitals and nursing homes.

The Robert Wood Johnson Foundation estimates between 4.9 million and 10.1 million people will lose Medicaid coverage in 2028 just due to work requirements and more frequent eligibility checks. Others may lose benefits because of budget cuts themselves.

Continued

Disability Care Cuts Signal Tough Budget Choices Ahead

By Sophie Quinton, State Affairs, April 14, 2026

Lawmakers in states led by both parties are considering cutting Medicaid funding for programs that help people with disabilities live at home, as they seek to rein in rising health care costs during a tight budget year.

Cuts enacted in Idaho and Maryland and proposed in Colorado and Missouri have prompted anguished protests from people with disabilities and their advocates. They say cutting funding for home- and community-based services threatens people’s health, wellbeing and financial stability, and may not save money in the long run.

Idaho families have struggled since Republican Gov. Brad Little’s administration last year ended a program that paid parents to help their disabled children with daily tasks, such as eating, bathing and dressing.

“People are suffering,” said Karen Kossow, president of Fair Care Idaho, a disability rights nonprofit.

Unable to hire professional aides at Medicaid’s low rates, some parents are now juggling full-time work and a child’s significant needs, Kossow said. Others are unable to pay the bills without money they once received from Medicaid.

The Idaho Legislature declined to reinstate the family caregiver program this year, citing the estimated $11.6 million annual cost to the state.

Lawmakers nationwide may weigh even more painful cuts to home-based services in future years, health care policy experts say, as the One Big Beautiful Bill Act's Medicaid cuts ramp up.

“We’re kind of at the tip of the iceberg,” said Alice Burns, associate director of the program on Medicaid and the uninsured at KFF, a health policy research nonprofit.

Medicaid is an almost $1 trillion public health insurance program for low-income people jointly funded by states and the federal government.

More than half of Medicaid dollars are spent caring for people over age 65 and people with disabilities, Burns said. So it’s almost impossible to cut Medicaid spending without impacting those groups.

And while federal law requires states to cover institutional care, states do not have to cover most services that help people remain at home. That makes home care a natural place for state leaders to look for savings.

“It’s this very big chunk of spending that’s optional for states to provide,” Burns said. 

Read the full article here

Local Perspectives: How Medicaid Changes Are Impacting Communities Across the Country

Blog, from Modern Medicaid Alliance, April 15, 2026

In communities across the country, patients, health care workers and community leaders are preparing for federal changes to Medicaid as part of the One Big Beautiful Bill Act (OBBBA). As state-level implementation of work requirements and subsequent Medicaid policy changes are underway, those most impacted by Medicaid policy changes are experiencing the early impact firsthand.

For Patients, Health and Stability Are at Stake

For many patients and families, Medicaid is a critical safety net, providing services that help make daily life, independence and ongoing care possible. Families are expressing concern about what disruptions could mean for their health and stability.

• “We’ve seen a lot of health care systems in our area having to close because of [funding reductions to Medicaid]; we’re seeing changes at the schools… Some of the services that he would typically qualify for… are not going to be available this year.” — Victoria Schiano, parent of child with disabilities who receives Medicaid coverage, Pennsylvania

• “There’s always something that he needs… So I don’t say it lightly when I say that Medicaid helps to save his life and give him the quality of life that he deserves.” — Bernita Richardson, parent of child with complex medical needs who receives Medicaid coverage, Virginia

For Providers, New Policy Changes Compound Existing Pressure

Health care providers and health system leaders already feel financially strained. As they look ahead, many are assessing how potential policy changes could affect staffing, services and access to care – particularly in rural and underserved areas.

• “Even before… our health system was broken, already under enormous strain… Now imagine someone pulling billions of dollars out of that already strained system… it means fewer services, fewer staff, longer waits, worse outcomes.” — Maureen May, registered nurse, Pennsylvania

• “[Changes to Medicaid] are directly worsening short staffing in our facilities… patients wait longer, complications increase, and lives are put at risk.” — Brian Magner, registered nurse, New York

• “Losing their coverage completely is the last thing they need, as it could be the final blow that prevents them from affording essential doctor visits and preventive care and lands them in the emergency room.” — Anthony Ashby, urban medical center president, Nebraska

Looking Ahead: Long-Term Impact on Communities

Beyond individual patients and providers, stakeholders are also considering how Medicaid changes could affect the health and stability of broader communities. From limiting access to emergency services or long-term care to higher costs for patients and families, many note that shifts in coverage and funding could have ripple effects across entire regions.

• “When Medicaid funding drops — or when eligible people lose access to Medicaid — counties face an impossible choice: raise taxes, cut other services or watch treatment programs collapse… The impact is felt across our entire community.” — Marsha Judkins, Mayor of Provo, Utah

• “If providers shut their doors, if service lines get shut down, if there are layoffs, if uncompensated care increases, all of those things have a ripple effect to everybody else that we serve.” — Martha Santana-Chin, nonprofit health plan leader, California

Read the full article here

Long-Awaited Safeguards For Medicaid Home And Community-Based Services Put On Hold

By Michelle Diament, Disability Scoop, April 17, 2026

Federal officials are delaying enforcement of a new mandate aimed at helping people with disabilities experiencing issues accessing Medicaid home and community-based services.

The Centers for Medicare and Medicaid Services said recently that it will hold off on a requirement that states establish a grievance system.

Under a 2024 regulation known as “Ensuring Access to Medicaid Services,” or the Access Rule, states must create a grievance process so that beneficiaries in traditional Medicaid plans can file complaints against a provider or state if they have trouble receiving the home and community-based services called for in their service plan. A similar process already exists for those receiving services through managed care plans.

The new option was supposed to be in place by July 9, but now CMS says it will not take any enforcement action until Dec. 31, 2027.

“Some states have indicated that they will be unable to meet the July 9, 2026 applicability date that we finalized for the grievance system requirements, at least in part because of the time required to implement changes to existing electronic systems or to implement new electronic systems,” said Dan Brillman, deputy administrator at CMS and director of the Center for Medicaid and CHIP Services, in a bulletin. “While states are not required to have electronic systems to meet the (fee-for-service) grievance system requirements, the exercise of enforcement discretion will support states by allowing additional time, at a state’s option, to implement electronic, integrated grievance and incident management systems and to meet the reporting requirements.”

In addition to the grievance system, the Access Rule stipulates that those receiving home and community-based services have service plans that are reassessed annually. It mandates that states maintain an electronic incident management system and details how quickly they must respond to incidents. The rule also sets minimum payment thresholds for direct care providers.

continued

MACPAC: CMS should require states to report hourly wages to HCBS workers   

By Suzy Frisch, McKnight's Home Care News, April 16, 2026

To help support the home- and community-based services workforce, the Centers for Medicare & Medicaid Services should require all states to report hourly wages paid to HCBS workers, the Medicaid and CHIP Payment and Access Commission (MACPAC) recommended in its annual report to Congress.

“Our research determined that the rate-setting principles cannot be achieved without robust HCBS payment data, which are limited,” the March 2026 report stated.

Implementing this recommendation would provide states with more comprehensive wage data, including comparison data from neighboring states, to foster a healthy workforce, MACPAC said. The federal Department of Health and Human Services should direct CMS to enact the requirement, covering workers in the roles of personal care, home health aide, homemaker and habilitation.

The report also covers recommendations for behavioral health in Medicaid and State Children’s Health Insurance Program; Medicaid for justice-involved youth transitions to the community; and access to care for Medicaid-enrolled youth in foster care.

MACPAC released an issue brief in 2025 highlighting that a lack of robust and uniform workforce data prevent states from selecting the most appropriate reimbursement rates for home- and community-based services.

States have considerable flexibility to design their programs and set payment rates, which leads to broad variations across the country. When it comes to payment rates, MACPAC recommends that states take a holistic approach to advance the goals of efficiency, economy, quality, and access. It also recommends that states review rates at regular intervals using tools like rate studies, indexing and rebasing.

Reporting wages is key because states often struggle to gain access to accurate, current and robust wage data, relying instead on historical data.

Continued

States Face Another Challenge With Medicaid Work Rules: Staffing Shortages

By Sam Whitehead, MedPage Today, April 13, 2026

Katie Crouch says calling her state's Medicaid agency to get information about her benefits can feel like a series of dead ends.

"The first time, it'll ring interminably. Next time, it'll go to a voice mail that just hangs up on you," said the 48-year-old, who lives in Delaware. "Sometimes you'll get a person who says they're not the right one. They transfer you, and it hangs up. Sometimes, it picks up and there's just nobody on the line."

She spent months trying to figure out whether her Medicaid coverage had been renewed. As of late March, she hadn't been reapproved for the year for the state-federal program, which provides health insurance for people with low incomes and disabilities.

Crouch, who suffered a debilitating brain aneurysm a decade ago, also has Medicare, which covers people who are 65 or older or have disabilities. Medicaid had been paying her monthly Medicare deductibles of $200, but she'd been on the hook for them for the past 3 months, straining her family's fixed income, she said.

Crouch's challenges with Delaware's Medicaid call center aren't unique. State Medicaid agencies can struggle to keep enough staff to help people sign up for benefits and field calls from enrollees with questions. A shortage of such workers can keep people from fully using their benefits, health policy researchers said.

Now, congressional Republicans' One Big Beautiful Bill Act, which President Donald Trump signed into law last summer, will soon demand more from staff at state agencies in places where lawmakers expanded Medicaid to more low-income adults -- nearly all states and the District of Columbia.

Under the law, which is expected to reduce Medicaid spending by almost $1 trillion over the next 8 years, these staffers will have to not only determine whether millions of enrollees meet the program's new work requirements but also verify more frequently that they qualify for the program -- every 6 months instead of yearly.

KFF Health News reached out to agencies that will need to stand up the work rules, and many said they'll need additional staff.

The mandates will put extra strain on an already-stressed workforce, potentially making it harder for enrollees like Crouch to get basic customer service. And many could lose access to benefits they're legally entitled to, said consumer advocates and health policy researchers, some of them with direct experience working at state agencies.

States are already "struggling significantly," said Jennifer Wagner, the director of Medicaid eligibility and enrollment at the Center on Budget and Policy Priorities and a former associate director of the Illinois Department of Human Services. "There will be significant additional challenges caused by these changes."

Republicans argue the Medicaid changes, which will take effect Jan. 1, 2027, in most states, will encourage enrollees to find jobs. Research on other Medicaid work requirement programs has found little evidence they increase employment.

The Congressional Budget Office estimated the rules would cause more people to lose health coverage by 2034 than any other part of the GOP budget law. It said last year more than 5 million people could be affected.

Many states don't have the staff to process Medicaid applications or renewals quickly, said consumer advocates and researchers.

Continued

Texas - After 16 months in jail, man with disabilities moved to state facility 

After more than a year in jail, a man with intellectual disabilities has been transferred to a state-supported living center, reuniting with his family and raising broader concerns about gaps in care.

Shawn Fraraccio, 26, was released from the Tarrant County Jail this month and transported to the Mexia State Supported Living Center, a state facility for people with intellectual and developmental disabilities.

His mother, Christy Bridgman, said the moment marked the end of a painful chapter.

She said it was the first time in more than a year she could hug her son.

“The biggest hug he’s had in a year and four months,” she said.

Bridgman said her son functions at the level of a young child, estimating his intellectual ability between ages 6 and 8.

Fraraccio had been held in the Tarrant County Jail since December 2024 following a domestic violence incident that his mother described as a mental health episode.

“It’s been a total. heartbreaking, traumatizing experience for me,” she said.

Fraraccio is now receiving care at the Mexia facility, but his transfer was delayed due to limited availability at state-supported living centers.

Krish Kundu, co-founder and executive director of the Texas Jail Project, said the case highlights a broader issue.

“Brings us to the larger question of why are there not enough beds for something that is already an entitlement for people like Sean?” Kundu said. “He never needed to be in jail.”

Kundu said other families are facing similar situations. Tarrant County officials said last month that more than 60 people in the county are in comparable circumstances.

“We are putting them in inappropriate placements of care,” Kundu said.

Continued

South Carolina - LETTER: A Whitten Defense

By Jane Parris and Linda Lee, The Clinton News, April 16, 2026

In response to the article by Jessica Holdman, referencing Whitten Center renovations being scaled back after shortfall discovered. As Parent Advocates for residents at Whitten Center, we are distressed to see monies have been diverted to other things by the overseeing agency, Office of Intellectual and Developmental Disabilities (OIDD). We fail to understand that after a Senate Proviso in 2024 required OIDD to fix our Centers and to use any available funding to get it done, then OIDD took $22 million designated for this project and spent it elsewhere. Our disabled residents receive SSI and Medicaid money. OIDD charges Medicaid $542.49 a day. According to Whitten Center’s 2025 budget, that brings approximately $8 million surplus. Each Regional Center should have a similar surplus. What is our agency doing with this surplus?

It concerns us that Kimberly Tissot, CEO of Able, SC, stated that our buildings are filthy and smell horrible, and are ripe with abuse and neglect. As parents, we find it offensive that someone who has not visited our children’s buildings would say something like that.

She stated that their goal is for no one to be admitted to our centers.

Ms. Tissot mentioned Olmstead, but she failed to mention that each individual is unique and one placement does not fit everyone. Some cannot function in the community. Some families may qualify for assistance but can’t find appropriate workers where they live. Some who have been sent to the Community have been returned to the Centers when the Community program could not meet their needs.

Our Centers have downsized according to Olmstead, but we still have many residents who need the level of care provided in an ICF facility like our Regional Centers. Individuals who qualify for Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) under Medicaid have a legal right to such facilities for as long as they remain eligible and choose to do so.

According to Justice Ruth Bader Ginsberg, “As already observed (by the majority) the ADA is not reasonably read to impel States to phase out institutions placing patients in close care at risk…Some individuals… may need institutional care from time ‘to time to stabilize acute psychiatric symptoms’… For other individuals, no placement outside the institution may ever be appropriate…for these persons, institutional settings are needed and must remain available. (Olmstead, at 604-605)

Justice Ginsburg also stated that “Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing that, on a case-by-case basis; that setting may be in an institution.” (Olmstead at 605).

Justice Anthony Kennedy warned of possible tragic consequences if states try “to drive those in need of medical care and treatment out of appropriate settings with too little assistance and supervision. States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their condition” (Olmstead at 610).

Read the full letter here

Note: The section cited above, from Olmstead p. 604-5, cites an amicus brief filed by VOR.

Florida - Federal Appeals Court Rebukes State For Institutionalizing Kids

By Carol Marbin Miller, Miami Herald via Disability Scoop, April 14, 2026

Florida’s “widespread” violation of the civil rights of children with severe disabilities has caused scores of youngsters to be raised in sterile institutions far from their families, a federal appeals court found, rebuking the state for failing Florida’s frailest children.

The 11th U.S. Circuit Court of Appeals found that Florida’s unwillingness to provide adequate in-home nursing care to the state’s most fragile children has caused at least 139 youngsters to be institutionalized in nursing homes generally reserved for elders, some of them there since they were babies. Another 1,800 children are at risk of being placed in nursing homes due to the state’s failure to provide care.

“Medically vulnerable children — for example, those who require specialized care like breathing tubes — require around-the-clock care or they may sustain significant injuries and even die,” U.S. Circuit Judge Adalberto Jordan wrote in an opinion endorsed by Circuit Judge Nancy G. Abudu. Circuit Judge Andrew L. Brasher dissented.

“That so many of these families have found ways to keep their children at home — often at great personal sacrifice — does not lessen the imminence of the future risk they face. Placing one’s child in an assisted care facility is not a choice that families take lightly,” the opinion stated. “And … some parents may justifiably fear that their children will face neglect at such a facility.”

The appeals court’s opinion upheld a July 2023 ruling by U.S. District Judge Donald M. Middlebrooks that Florida’s unwieldy system of funding and providing care for children with medical complexities, which relies largely on managed-care providers who are unaccountable to the state, has left families in “a maze almost impossible for parents to escape.”

Middlebrooks ordered the state to improve community-based care for kids with severe disabilities to reduce its reliance on institutions. Among the provisions of Middlebrooks’ order: a requirement that health administrators ensure that children with complex medical needs receive at least 90% of the private duty nursing care their care plans prescribe.

Continued

Florida sits on millions in unspent funds for disability care while thousands wait

By Craig Patrick, Fox 13 News - Tampa Bay, April 15, 2026

Thousands of Florida children and adults with severe developmental disabilities are qualified to receive home-based services but wait years for the support to arrive.

In prior years, Florida’s Agency for Persons with Disabilities (APD) has attributed the multi-year backlog to a lack of dedicated funding.

However, state financial records reveal a massive rolling surplus of $456 million in unspent funds allocated for home-based services. According to Jim DeBeaugrine, who directed the agency under former Govs. Jeb Bush and Charlie Crist, when combined with the federal match, that unspent total reaches approximately $1.06 billion.

The backstory:

The waitlist is not an unsolvable problem; it has been cleared before. Decades ago, under legal pressure from a parent-led lawsuit, Gov. Bush made a promise to end the backlog. By more than tripling funding for home-based services, his administration successfully cleared the waitlist, which in turn allowed parents to re-enter the workforce and stimulate the economy.

However, the waitlist began to redevelop before Gov. Bush left office. Then, during the Great Recession, under former Govs. Charlie Crist and Rick Scott, state revenues shrank and the waitlist expanded. Yet, even as the economy recovered and the state accumulated record budget surpluses under Gov. Ron DeSantis, the disability waitlist remained.

Continued

Pennsylvania - A proposed crackdown on corporate landlords could threaten Philly-area homes for people with intellectual disabilities

The bill aims to lower single-family home prices. But it would inadvertently endanger companies that provide housing for some people with disabilities.

By Aaron Moselle, WHYY News, April 16, 2026

Providers in the Philadelphia area say that legislation moving through Congress could destabilize housing for intellectually and developmentally disabled residents by sweeping certain group home landlords into a ban aimed at Wall Street-style investors.

About a month ago, the U.S. Senate passed the Renewing Opportunity in the American Dream to Housing Act, a bipartisan package aimed at increasing the country’s housing supply and making the market more affordable amid an ongoing crisis.

One provision would effectively bar large corporate landlords from purchasing single-family homes. These properties are routinely used for licensed group homes and leased to care agencies that coordinate critical services for people with Down syndrome, cerebral palsy and some forms of autism.

These constituencies argue the federal legislation will upend the delicate ecosystem serving this vulnerable population — in Philadelphia and across the country. And they’re urging the House to amend the legislation before taking it up.

If the package passes in its current form, many of these companies would no longer be able to purchase more properties to lease to care providers. In Pennsylvania, it is common for individuals to wait months to secure a spot in such a group home, in part because there isn’t enough supply to meet the demand. 

Continued

Pennsylvania - In response to RFK Jr.’s ‘autism registry,’ Gov. Josh Shapiro won’t let Pa. share disability data with the federal government

By Gillian McGoldrick, The Philadelphia Inquirer via Union-Bulletin, April 16, 2026

Pennsylvania will not share disability data with the federal government under a new executive order signed this week by Gov. Josh Shapiro.

Citing Health and Human Services Secretary Robert F. Kennedy Jr.’s effort to use Medicaid and Medicare data to determine the cause of autism, Shapiro directed Pennsylvania not to participate unless required under federal law.

Kennedy’s so-called “autism registry” announced last year sent shock waves through the autism and intellectual disability community with fears that it would stigmatize, marginalize or track people with autism with the intention of eliminating the disorder.

Kennedy announced the database last year as a pilot program between the National Institutes of Health and Centers for Medicare and Medicaid Services to use insurance claims, medical records, and data from smartwatches to find the “root causes” of the disorder, with future plans to expand the data tracking to other chronic disorders.

Shapiro’s executive order — which was one of three signed Wednesday — adds data privacy protections for people with intellectual disabilities and autism and prohibits state agencies from sharing data not required by federal law.

“Sadly right now in our nation’s capital, we have a president and a secretary of Health and Human Services who openly disregard and disrespect and mock people with disabilities,” Shapiro said in a news conference ahead of the executive order signing. “We’re different here in Pennsylvania … We believe in building a government that is compassionate, thoughtful, and creates safe and loving spaces for all.”

A spokesperson for HHS rebuffed Shapiro’s latest executive order in a statement, adding that the National Institutes of Health initiative is intended to “advance our understanding of autism.

These efforts are not about tracking individuals whatsoever,” said Emily Hilliard, the press secretary for HHS. “All NIH-managed databases follow the highest standards of security and privacy, with the protection of personal health information as a top priority.”

Read the full article here

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with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

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VOR SUPPORTS:

H.R.6137 / S.3211 - Rep. Brian Fitzpatrick (R-NJ) and Sen. Maggie Hassan (D-NH) - 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.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 indiviiduals 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. 

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