February 7, 2025

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.

Please join us on Capitol Hill

May 12-14, 2025

VOR's Annual Legislative Initiative

Washington, D.C.

We will meet in D.C. on May 12th - 14th

for meetings with

Congressional Staff and Federal Agencies

to discuss issues of critical importance to

individuals with severe or profound I/DD and autism

and their families.

This year's topics are expected to include:

Preventing Cuts to Medicaid

and

Rebuilding and Supporting our DSP Workforce

This event is open to all members of VOR

Please register early, to reserve your spot

Registration is free until February 1, 2025

So please register now!

To register for the Legislative Initiative,

Please Click Here

Sponsorship Opportunities

This is a critical time for our families.

The actions taken by Congress and the Administration

in the next few months could impact the lives of

hundreds of thousands of people with I/DD and autism in the years to come.

Please help us help.

Diamond - $ 5,000

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Silver - $ 500

Bronze - $ 250

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Any and all gifts are welcome

We would like to thank everyone who participated in the

Day of Action to Defend Medicaid

sponsored by Families USA, Community Catalyst,

the Service Employees International Union (SEIU), and the National Health Law Program.

The dial in number is still open.

It's not too late to leave word with your members of Congress that you oppose any cuts to the Medicaid program.

866-426-2631

Call today!

Once again, the news has been dominated by the impending threats to Medicaid, and the funding for any and all long-term services and supports for people with intellectual and developmental disabilities and autism.

Hundreds rally to support Medicaid

By Melissa Kim, WUSA-9 News, February 6, 2025

Hundreds of health care and public service workers from across the country met with members of Congress Thursday to express their support for keeping Medicaid, the largest health insurance program in the country, fully funded. 

Currently, Medicaid helps cover medical costs for nearly 80 million Americans, including children, who would otherwise not be able to afford coverage. 

April Verrett, the president of the union representing health care and public service workers, said they are bracing for the worst. 

"The Medicaid cuts that are being talked about right now in Congress, it’s a non-starter for millions of people across the country," the SEIU International leader said. "There has been so much chaos and uncertainty over the last couple of weeks as we’ve seen executive orders come down."

Workers from all over the country came to Capitol Hill for a town hall meeting to make sure Medicaid isn't on the financial chopping block.

Dr. Neskia Haghighat from California explained why she believed all Americans should have access to health care through Medicaid.

"If you’re a human being, you need health care," Haghighat said. "It doesn’t matter who you voted for, it doesn’t matter what side of the political spectrum you come from, we all agree that health care if a basic human right. We deserve to be healthy functioning members of our society. If we can do that, if we can take care of our physical health, if we can take care of our mental health and if we can take care of our families and communities then we can get back into the workforce, we can be productive members of society."

Read the full article here

Opinion: Medicaid cuts are a war on the poor

By Brian Williams, M.D. The Dallas Morning News, Feb 1, 2025

On Jan. 28, Medicaid reimbursement portals across all 50 states were down after federal financial assistance programs were frozen by the Trump administration, impacting access to health care for millions. As a surgeon dedicated to serving the underserved, I know Medicaid is a lifeline for the majority of my patients. This disruption to Medicaid services highlights its impact on real people, real lives, and the fundamental right to medical care. We must advocate for evidence-based solutions that ensure access to quality health care for all.

Throughout American history, presidents from both parties have supported broad expansions of health coverage. Teddy Roosevelt, a Republican, advocated for a national health service to protect families from sickness and hardship. His cousin, Franklin Delano Roosevelt, a Democrat, also initially supported universal health care. However, political realities redirected him to champion Social Security and other New Deal programs. Later, Truman, Eisenhower and Kennedy all pushed for some form of universal coverage. Lyndon B. Johnson’s Great Society programs included two historic health care initiatives: Medicare and Medicaid.

Medicaid is unique in that it is a joint federal-state health insurance program covering approximately 80 million American adults and children. That is more than the combined populations of Texas, Florida and New York.

However, Medicaid’s reach extends far beyond low-income patients. It’s the leading provider of essential services like long-term care, mental health services and maternal care in the United States. It’s also the largest insurer of children through CHIP, the Children’s Health Insurance Program.

Medicaid plays a vital role in the health and well-being of a diverse population, including many who do not fit the stereotypical image of a Medicaid recipient.

The case for strengthening Medicaid is not just a moral imperative, but also an economic one. According to the U.S. surgeon general, the health of our nation is inseparable from the health of our economy. A healthy population is the foundation of a productive workforce and a thriving society. When people have access to quality health care, they are better able to participate fully in the workforce, contribute to their communities and reach their full potential. By investing in Medicaid, we uphold our commitment to the most vulnerable among us and lay the foundation for a prosperous America.

Strengthening Medicaid is necessary to individual health and national prosperity. This requires expanding access by incentivizing states and raising public awareness, increasing funding to ensure quality care and improving efficiency through streamlined enrollment. Prioritizing preventive care and chronic disease management and addressing social determinants of health like housing and food insecurity are essential. Finally, promoting innovation through telehealth and value-based care models can enhance access and quality while controlling costs.

These combined efforts will strengthen Medicaid, ensuring a healthier and more productive America, now and for generations to come.

Read the full article here

Opinion: The Choice - Tax Cuts for the Rich or Health Care for Americans

By Aaron E. Carroll, The New York Times, February 2, 2025

Last week was brutal for anyone who cares about the future of health insurance for low- and middle-income Americans. On Tuesday, the federal government’s Medicaid funding portals temporarily shut down, sending doctors, patients and hospitals into a panic. The next day, President Trump’s nominee for health secretary, Robert F. Kennedy Jr., fumbled basic facts about the program during a Senate hearing, despite the fact that it covers more than 70 million Americans. In the House of Representatives, meanwhile, legislators are circulating a so-called menu of spending cuts that would gut access to health care.

It’s that last threat that could prove the most devastating and long-lasting. You see, the Trump administration faces a dilemma: The president has promised to extend the 2017 tax cuts (nearly half of which will go to the wealthiest 5 percent of Americans) at a hefty cost of $4 trillion over the next decade, but many Republicans are reluctant to add to the federal deficit.

How do they square the math? It appears they are prepared to do so at the expense of the poor and middle class, by yanking health care coverage from children, new mothers, people with disabilities and seniors. Republican leaders in Congress have suggested that one option they are considering to bankroll their tax breaks would be to cut hundreds of billions from Medicaid; another proposal would roll back subsidies that have helped middle-class families pay Affordable Care Act premiums. They have made it clear they want to finalize legislation in the first 100 days of Mr. Trump’s presidency.

It’s hard to overstate how catastrophic the proposed cuts would be. Medicaid alone covers more than 40 percent of births in the United States. Far from being a handout, it is one of the most cost-effective insurance programs in the country, meaning there is very little fat to cut without immediately harming people. It’s because of Medicaid that children, seniors and people with disabilities — groups that make up more than 75 percent of the program’s spending — can see doctors and fill prescriptions without going bankrupt.

In their menu of options, House Republicans propose adding work requirements to Medicaid, which would cut benefits to some recipients and, they claim, save billions. Proponents of work requirements argue that such measures incentivize employment, but the evidence overwhelmingly shows that they don’t. This is because nearly every adult in Medicaid who can work already does, or is a student, disabled or a caretaker for someone else. Instead, people lose access to care because of bureaucratic red tape and difficulty proving they qualify. Work requirements bloat the bureaucracy and result in worse care for fewer people.

Republicans are also considering distributing a set amount of money to states, regardless of what care actually costs. But states are already struggling with tight budgets. They don’t have hidden, untapped solutions to magically fund health care. With less money, they must refuse coverage to more people or pay providers even less, which means fewer doctors will see Medicaid patients, which reduces access for everyone.

Continued

Opinion: Medicaid Cuts Threaten Schools and Children  

By Elena Silva and Carrie Gillespie, February 4, 2025

Among the list of cuts proposed to serve Trump’s tax plan is Medicaid, a 50 year old entitlement program that funds medical care for low-income individuals and families and people with disabilities.

Cuts to Medicaid, which provides health coverage to more than 37 million children, would have devastating ripple effects not only on children’s health but also on their educational outcomes and long-term success.

While Medicaid is primarily known as a health insurance program, it is also among the largest funding sources for K-12 public schools. Medicaid’s school-based services cover speech and occupational therapy, mental health counseling, specialized medical equipment, and transportation. Medicaid also helps to identify and support children with delays or disabilities as early as possible by funding developmental screenings, evaluations, and early intervention services for infants and toddlers.

Without Medicaid, schools would face impossible choices: cutting general education programs, reducing support for students with disabilities, or raising local taxes. Low-income and rural districts, which serve higher proportions of Medicaid-eligible students, would bear the brunt of these cuts. Families would endure longer waits for services in their communities. Despite confusion about this, Medicaid is jointly financed by federal and state governments. Proposals to turn Medicaid into block grants or per capita caps (a fixed amount per beneficiary) would shift costs to states. Puerto Rico’s Medicaid is already financed this way and it doesn’t work (See article below). This would strain preK-12 education even more.

Continued

How States Would Fare Under Medicaid Block Grants or Per Capita Caps: Lessons from Puerto Rico

By Edwin Park, The Commonwealth Fund, January 6, 2025

Abstract

• Issue: Some federal and state policymakers support converting Medicaid into a block grant or “per capita cap” program.
• Goals: Examine how Puerto Rico’s long-standing experience operating under a Medicaid block grant may predict how states would fare under block grants and per capita caps that limit federal funding.
• Methods: Review of available data sources, policy analysis, and research related to Puerto Rico’s Medicaid program.
• Key Findings and Conclusion: Puerto Rico’s block grant funding led to large federal Medicaid funding shortfalls, which contributed to the commonwealth’s fiscal and debt crisis. Puerto Rico’s Medicaid program is already far less comprehensive than state Medicaid programs, with certain groups and benefits uncovered. Temporary federal Medicaid funding increases during the past decade sustained Puerto Rico’s existing program but led to only modest improvements in coverage and access.

Conclusion

Puerto Rico’s experience with its Medicaid block grant offers valuable lessons. Puerto Rico’s Medicaid program demonstrates how capping federal funding would likely shift significant costs to states and adversely affect state budgets. It also would sharply limit the ability of state Medicaid programs to respond to future recessions, epidemics, and natural disasters, and lead to cuts to eligibility, benefits, and provider payments that reduce access to care for vulnerable, low-income beneficiaries.

A policy option permanently eliminating Puerto Rico’s block grant and replacing it with the same federal funding structure available to states would allow Puerto Rico to expand access to needed care for its more than 3 million residents.

Read the full report here

Medicaid Provider Taxes: A Critical Source of Medicaid Funding for States

By Leonard Cuello, Georgetown University McCourt School of Public Policy, February 4, 2025

As my colleague Edwin Park has detailed, House Republican leaders are considering draconian cuts to Medicaid that would decimate the program. Among the House Budget Committee’s list of options for Medicaid cuts being considered is a restriction on states’ current ability to use provider taxes to help finance their share of the cost of Medicaid. The House Budget Committee list claims that this proposal would cut federal Medicaid spending by $175 billion over ten years (though the list does not specify what is the basis of these estimates). Provider taxes are poorly understood, and yet their role is critical to states and their Medicaid programs. Let’s understand why.

What Are Provider Taxes?

Medicaid is jointly financed by the states and the federal government. Thus, though the federal government pays more than half of the bill, the states contribute the remainder. Under federal law, states have flexibility in how they finance their share of Medicaid costs. States’ general funds account for most of their state share (67.6% in state fiscal year 2024, according to the National Association of State Budget Officers (NASBO). But states also rely on other financing sources, including dedicated taxes, funding from local governments, and taxes and assessments on health care providers and managed care plans.

While there is no more recent data, in 2018, provider taxes accounted for about 17% of the state share of the cost of Medicaid (this is an average; many states have more at risk). Under provider taxes, states can levy taxes and assessments on a wide range of provider types, including hospitals, nursing facilities, intermediate care facilities, managed care plans, and others. Every state including the District of Columbia, except for Alaska, uses provider taxes to help fund their programs. Thirty-nine states including the District of Columbia have at least three provider taxes.

Why Support Provider Taxes? (A Top Eight List)

Continued

Trump vows to ‘love and cherish’ Medicaid — while Republicans plot cuts for savings

The president's position on the health safety-net program could put him at odds with Republicans in Congress.

By Ben Leonard, Politico January 31, 2025

President Donald Trump on Friday pledged not to cut Medicaid, save for fraud and abuse — a vow that puts him at odds with Republicans in Congress who hope to use changes to the program to help finance a massive legislative package to enact the president's domestic agenda.

Asked about broader spending cuts in the Oval Office on Friday afternoon while signing executive orders, Trump said we’ll “love and cherish” Social Security, Medicare and Medicaid, the last of which insures more than 70 million Americans.

“We’re not going to do anything with that, unless we can find some abuse or waste,” Trump said. “The people won’t be affected. It will only be more effective and better.”

Republicans are considering slashing hundreds of billions of dollars from Medicaid, the safety-net health insurance program, to help finance an extension of Trump-era tax cuts and beefed-up border enforcement through the budget reconciliation process, which allows the majority to pass legislation along party lines without having to contend with the Senate filibuster.

Democrats would make the case that the changes to Medicaid currently under consideration by congressional Republicans go beyond just fraud and abuse measures. Some GOP proposals have targeted capping federal Medicaid payments to states based on population size, which Republicans argue would make the program more efficient and sustainable. Other ideas within the party include making work requirements a condition of eligibility.

On the campaign trail, Trump was largely silent about the future of Medicaid despite vows to protect Social Security and Medicare.

Continued

Could Trump Walk Away from Unpopular Health Proposals?

By Drew Altman, KFF, January 31, 2025

President Trump’s decision to rescind the broad freeze on federal grant funding shows that his administration is not impervious to public blowback and media scrutiny. Could he walk away from controversial health policy proposals percolating in the Congress if they prove unpopular?

I wrote previously that President Trump’s silence on Medicaid during the campaign could have significant implications. He pointedly said he would not cut Medicare or Social Security and wanted to build up U.S. defense capabilities. Therefore, the logic goes, if Republicans want to pay for their tax cuts, they have no choice but to follow the money and back the Brinks truck up to Medicaid, the next largest part of the federal budget. The early signs on Capitol Hill suggest they are doing that. Proposals being floated in the House would cut a prodigious $2.3 trillion out of Medicaid spending over the next 10 years, or nearly one third of Medicaid spending. It’s 22% of all federal funding for the states.

But there’s a flip side to Trump’s silence—it gives him flexibility to walk away. He is famously transactional and not committed to any specific policy positions on health. He is also always focused on his popularity. Today it’s at his all-time high (47%).

If it begins to fall, as it generally does for presidents once they are in office, and Trump perceives that unpopular health proposals threaten to drive his ratings lower, he could abandon unpopular health proposals that cut spending. But, this could create other political problems with members of Congress who want spending reductions to help pay for tax cuts.

Four big proposals matter the most and at least three of them will be unpopular once debate about them begins. They also will engender strong stakeholder opposition. These include imposing a Medicaid per capita cap with an unprecedented cut in federal Medicaid funding to states; significantly cutting federal matching funding for the Medicaid expansion, which will all but kill the expansion in the 41 states, including D.C.; imposing Medicaid work requirements nationwide; and not extending the Affordable Care Act’s (ACA) enhanced premium subsidies, which will drive up out of pocket premium costs by more than 75% for enrollees.

Of the four, the public reaction to work requirements is the most uncertain. Work requirements are an indirect way to cut the Medicaid rolls and do not lead to work, but that requires a lot of explanation that does not come through in “he said, she said” news coverage, and the idea of promoting “work” is popular, especially with Republicans who view Medicaid as a form of welfare.

Continued

Trump Medicaid pledge could complicate GOP cuts  

By Nathaniel Weixel, Joseph Choi, and Alejandera O'Connell-Domenech, The Hill, February 6, 2025

Medicaid work requirements will likely be part of the House GOP reconciliation bill, as Republicans seek to slash at least $500 billion in federal spending to help enact President Trump’s agenda. But Trump’s vow to “love and cherish” Medicaid could make it more complicated. 

During the campaign, Trump was largely silent on Medicaid while also pledging he would protect Medicare and Social Security. But last week when asked about spending cuts, Trump included Medicaid in the list of programs he vowed not to touch — with a catch. 

“We’re not going to do anything with that, unless we can find some abuse or waste,” Trump said. “The people won’t be affected. It will only be more effective and better.” 

House Republicans are debating how deep they need to cut to pay for an extension of Trump’s tax cuts and border enforcement funding. They are also eyeing hundreds of billions of dollars in savings from Medicaid changes. Those changes include instituting work requirements and capping how much federal money is spent per person. 

House Energy and Commerce Committee Chairman Brett Guthrie (R-Ky.) said he’s reached out to the White House for more clarification on what Trump wants. 

But Guthrie said Trump’s point about making Medicaid “more effective” means the president supports ways to make the program more efficient. 

Continued

The Truth about Waste and Abuse in Medicaid

By Andy Schneider, Georgetown University McCourt School of Public Policy, January 27, 2025

“States are abusing federal Medicaid policy. There is an enormous amount of waste, fraud and abuse in the program.”

– Brian Blase, President, Paragon Health Institute, as reported in Stat (January 6, 2025)

This falsehood is one premise for the proposals to cut federal Medicaid spending by $2.3 trillion (with a “t”) over the next 10 years now under discussion among House Republicans. The thinking goes: there’s so much waste, fraud, and abuse in the program that states can easily absorb the loss of over a quarter of their federal Medicaid matching payments simply by improving their management and cutting out the “fat.” 

This premise is false, and the thinking is dangerously wrong. 

This is the second of two blogs addressing this falsehood. The first focused on fraud against Medicaid, i.e., intentionally submitting false information to the program in order to receive payment, such as billing for services not furnished. Fraud is generally a criminal act. This blog focuses on waste and abuse, which are not.

CMS defines waste as overusing services or other practices that result in unnecessary costs to the program. It cites as examples when a provider prescribes more medications or orders more lab tests than necessary. CMS defines abuse as what happens when health care providers or suppliers perform actions that directly or indirectly result in unnecessary costs to the program, including “any practice that doesn’t provide patients with medically necessary services or meet professionally recognized standards.” As examples, a provider overcharges for services or manipulates billing codes to increase its reimbursement. 

The line between waste and abuse is blurry, but in both cases, the result is unnecessary costs to Medicaid. Of course, the terms are not limited to Medicaid or Medicare or other health programs; they are applied to other government programs as well. GAO defines waste as squandering money or resources; it defines abuse as behaving improperly or unreasonably or misusing one’s position.

When Blase accuses states of “abusing” federal Medicaid policy, he appears to be referring to state methods for financing the costs of Medicaid. These methods, including raising revenues from taxes on providers, are approved by CMS under current law. Provider taxes are legitimate topics for policy debate—see this intellectually honest MACPAC analysis—but hardly qualify as “abuse”.

There is waste and abuse in Medicaid, just as there is in Medicare and in private health insurance.

Waste and abuse happen in Medicaid and Medicare and private health insurance, but they are very hard to quantify. One metric the federal government uses to assess how well its programs are administered is the rate of “improper payments.” These are payments that do not meet statutory, regulatory, or administrative requirements or that are made in an incorrect amount. As explained in the previous blog, Medicaid improper payments are not the same as fraud. Nor are they the same as waste or abuse. Some improper payments are lost to fraud, to waste, and to abuse. But most improper payments in Medicaid involve missing or insufficient documentation to support the payment that has been made. The Medicaid improper payment rate (5.09% in 2024) is not a fraud rate, a waste rate, or an abuse rate.

Continued

Opinion: Adults living with developmental disabilities in New Jersey require more support

By Steve Setteducati, USA Today, via North Jersey,com, February 7, 2025

An intellectual or developmental disability, or I/DD, is multifaceted, complex and diverse. No one’s needs are exactly the same. Individuals with I/DD may be quite independent, need moderate support or require complex care. Regardless of the diversity of a disability, those who receive any one of a multitude of diagnoses have one thing in common: They will always need support.

New Jersey is home to a significant population of individuals with I/DD who require ongoing support throughout their lives. According to the latest data from the CDC Centers for Disease Control and Prevention, about 1 in 35 (or 2.9%) of 8-year-old children in New Jersey were identified with autism spectrum disorder, or ASD, in 2020, making New Jersey one of the states with the highest autism prevalence in the nation. As these children grow into adulthood and age out of critical services, the challenges for individuals with I/DD — and their families — become even more pronounced.

From the moment a parent learns that their child has an I/DD, they experience extreme anguish, worrying about finding appropriate care. Unfortunately, adults living with I/DD continue to experience challenges when looking for available programs and services. Many New Jersey families go through painstaking and extensive efforts searching for and applying to numerous providers, only to be put on waitlists, leaving them unsure if their loved ones will receive the services they require. In addition to trying to enroll in a program that provides supervision, life skills and community integration during the day (day programs), many families are searching for residential placement for their loved ones. Parents are often riddled with fear and uncertainty as they worry what will happen to their children when they are no longer able to care for them. According to the state Division of Developmental Disabilities, or DDD, nearly 4,000 people living with developmental disabilities are currently on a waiting list for the Community Care Program, which provides the funding needed for individuals to live in a supervised residence. Many guardians complain of subpar services, neglect and even abuse in group homes as well as some day programs. Unfortunately, there are just not enough quality programs for the growing number of adults with I/DD.

Continued

Opinion: Those with intellectual, other developmental disabilities deserve better from North Carolina

By Beth Field, Citizen Times, february 2, 2025

When Tropical Storm Helene unleashed its fury on Western North Carolina, many individuals with intellectual and other developmental disabilities (I/DD) were cut off from their essential lifeline: paid caregivers. These caregivers, unable to reach those in need, were unable to provide critical assistance.

This disaster underscores a persistent issue that affects the I/DD community even when the skies are clear: thousands of North Carolinians have been waiting for years for the services and support that would allow them to lead fully integrated lives.

My heart goes out to all those impacted by the storm and the first responders who have worked tirelessly to assist. But beyond this immediate crisis, North Carolina’s I/DD community faces a broader, ongoing threat — a dangerous backlog of individuals waiting for essential services. This problem existed long before Helene made landfall, and with the waitlist growing, the time to act is now.

The Registry of Unmet Needs, also known as the Innovations Waiver, is North Carolina’s primary Medicaid program for individuals with I/DD. The waiver currently provides home and community-based services to about 14,000 individuals. Yet approximately 18,500 people remain on the waitlist, meaning more individuals are waiting for help than are receiving it. In North Carolina, the wait time for services can be 10-12 years or more. 

This delay doesn’t just deprive people of vital care, it also places an immense burden on families, many of whom are forced to provide care with limited resources. Many individuals with I/DD rely on family caregivers — a situation that becomes a crisis when those caregivers fall ill, pass away, or another unforeseen event like a natural disaster happens. We saw this during COVID.  

I frequently hear from elderly parents who are heartbroken over their adult children’s uncertain future after they’re gone, despite years of dedicated care. I also work with many individuals with developmental disabilities who are eager to live, work, and thrive in their communities but are held back by a lack of essential support, which the Innovations Waiver and trained paid caregivers could provide — in a way that they also deserve, and like most people take for granted. 

Continued

Parents’ plea: Preserve funding for disability services in Washington  

By Lee Springgate and Robert Wheeler, The Seattle Times, January 31, 2025

Gov. Bob Ferguson and state lawmakers are grappling with a projected shortfall of over $10 billion over the next biennium. Ferguson has made it clear that he expects both the legislative and executive branches of government to consider cuts to services before entertaining tax increases. This is entirely understandable. Who can argue against efficiency and taxpayer protection?

State tax revenues have increased dramatically over recent budget cycles allowing decision-makers to fund a wide array of new programs. Layers of services were added incrementally, without any serious effort to sunset or prioritize programs. When budget forecasts demand frugality, rather than pruning low-priority services, decision-makers go to their default position and impose across-the-board cuts. The exceptions to this meat ax approach are programs favored and championed by victorious political candidates (i.e., housing, public safety, K-12 education).

Unfortunately, this process works against the interests of adults with intellectual and developmental disabilities, who are relatively invisible and often dependent on others to speak on their behalf. They do not have well-heeled lobbyists or large constituencies, and can’t work the Byzantine budgeting and political process. They rely on all of us for protection, support and the opportunity to lead a meaningful life.

In this regard, individuals with developmental disabilities were identified by framers of the Washington Constitution as a priority for state government. These services, along with common schools and prisons, were regarded as a fundamental obligation of state government. Over the ensuing 150 years, state support for the IDD population increased to include special education, respite services and employment and residential support.

About 61,000 people are on the state Division of Developmental Disability caseload. About 35,000 are children under 21, living mostly at home and who receive special education services. Of the 29,000 adults, about 16,000 live at home and the remaining 13,000 live in housing ranging from residential rehabilitation centers and adult family homes to supported-living facilities and independent residences.

The two-year budget allocation for all services for adults living within and outside the family home is about $4 billion. Of that total, about 50% is derived from a federal Medicaid match. So, it is clearly penny-wise and pound-foolish to reduce state general fund contributions to the adult IDD population.

All adults with IDD are already facing service cuts because of the acute shortage of qualified caregivers. This is at a time when approximately 2,000 adults with IDD are living at home with parents over the age of 60 and in need of immediate placement outside the family home. The remaining 11,000 adults living at home will need to transition to community placement within the next 10 to 20 years, resulting in an unfunded state liability above $1 billion annually (by year 20).

The adult IDD population receives less than 2% of all state revenues and less than 4% of all general fund expenditures. This is hardly a major slice of the budget pie, and it confirms national studies that place Washington in the bottom third in funding for its IDD population. Abuse and neglect are almost certain by-products of indiscriminate budget reductions. The safety and well-being of this vulnerable population should be of paramount importance.

Continued

Opinion: Pennsylvania's state budget can change the lives of the disabled, or not   

By Gary Blumenthal, Pittsburgh Post Gazette, February 3, 2025

Every year, as the legislative clock resets, families of individuals with disabilities and advocates for the human services community brace themselves for the emotionally draining and complex budget process.

For these families, it is not just a bureaucratic task but a lifeline — their only hope to preserve the programs that sustain their lives. In 2025, the stakes are higher than ever for Pennsylvania’s Intellectual Disability/Autism (ID/A) community.

Transforming lives

Gov. Josh Shapiro has shown leadership and commitment to disability rights, elevating the concerns of the ID/A community to a high priority in last year’s budget. He pledged to support a five-year plan to eliminate the state’s waiting list for ID/A services. This initiative holds the promise of transforming lives for over 6,000 individuals eligible for services but unable to access them due to a severe workforce shortage.

However, the promise remains at risk. The final enacted budget reduced the governor’s initial funding request by $93 million, stalling progress and leaving many families without the support they need. This funding shortfall prevented the state from raising Direct Support Professional (DSP) wages to the actuarially determined competitive wage level.

DSPs are the backbone of care for individuals with intellectual and developmental disabilities, yet their turnover rate continues to exceed 30% — a grim testament to inadequate pay and difficult duties. Without a sufficient workforce, eligibility for services means little when those services are inaccessible.

Pennsylvania families continue to feel the weight of this crisis. Parents and caregivers are often left to fill the gaps, shouldering immense physical, emotional, and financial burdens. Despite being informed by the Department of Human Services that their loved ones qualify for “Waiver Funding” designation, the reality is bleak: isolated individuals remain at home, waiting for services that may never arrive. For some families, the pressure is unbearable.

Perpetual threat

This issue is not confined to Pennsylvania. Nationally, programs like Medicaid, Medicare, and Social Security — pillars of support for the elderly, disabled, and impoverished — are under perpetual threat.

Proposals to convert Medicaid into a block grant program could drastically reduce federal funding and eliminate critical safeguards. Such changes would only exacerbate the challenges faced by ID/A families and advocates, making it all the more crucial for states like Pennsylvania to step up and lead.

Governor Shapiro’s administration has taken important steps. Last year, the Commonwealth directed the development of an actuarially sound rate and wage estimate for DSPs and launched its five-year initiative to eliminate the ID/A Emergency Waiting List. These efforts demonstrate that progress is possible when leaders prioritize disability rights.

Yet, progress requires sustained effort and accountability. Systemic issues are not fixed in one year. It demands ongoing collaboration between families, advocates, and legislators to ensure that the promises made are kept.

Continued

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What's Happening In Your Community?

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Do you have information or a news story you would like to share?

Is there legislation in your state house that needs attention?

Contact us at info@vor.net

So far this year, 1,818 bills have been introduced in the 119th Congress.

Only a very few (3) of these bills have anything to do with people with I/DD or autism.

As yet, no text or summaries have yet appeared on the congressional website, so we cannot say if we support or oppose the bills.

Please stay tuned.