May 16, 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.

VOR's Board of Directors cordially invites you to attend:

VOR's 2025 Annual Meeting

Sunday, June 8, 2025

3 pm ET / 2 pm Central / 1 pm Mountain / Noon Pacific

on Zoom

Every year in June, VOR's Board of Directors holds an open meeting to introduce ourselves to members and give them a chance to interact and share their concerns, challenges, and achievements.

We will discuss the health of the organization, discuss our financial picture, review our legislative agenda and ongoing advocacy campaigns, and present our goals for the years ahead. We will present this year's VOICE Award, and hold an open forum of state reports and issues that face our families and loved ones.

Stay tuned for more details

Notes from D.C.

VOR 's 2025 Legislative Initiative

Earlier this week, a steadfast group of VOR Advocates met with members of Congress, The Department of Justice, and the Administration for Community Living to discuss the issues that affect our families.

First and foremost was our request to congress not to cut Medicaid in any way, manner, or form - knowing that any cuts made to programs for any group of people with I/DD or autism inevitably end up with bad consequences and further marginalization for those at the severe/profound end of the spectrum.

We asked for better protection for people with ID/A in all settings, restoring the staff of the Office of the Inspector General of the Department of Health and Human Services. We asked for REAL oversight and accountability of state Protection and Advocacy agencies, in hope of improving protections for people with ID/A in all settings while reining in the excesses of their advocacy against intermediate care facilities and their misinterpretation of Olmstead as an integration mandate.

And we asked for Congress to pay attention to the ongoing critical shortage of Direct Support Professionals.

VOR's requests may be found on our website, at:

https://www.vor.net/legislative-voice/item/vor-legislative-initiative-2025-materials-for-congress

We found a very different, sometimes disturbing atmosphere in our nation's capitol this year. Many of those who had been overseeing services for our loved ones over the years, for better or for worse, had recently been fired or had left their positions. Many of our families' issues and concerns had been placed on the back burner, while most resources had been assigned to focus on DEI and other priorities of the Administration.

But many of our participants had great meetings with their congressional staffers, sharing our stories, our concerns, and making sure they know who we are and why we continue to come to D.C.

As a group, we felt honored to have had the opportunity to speak to those who would listen and to have given a voice to those who cannot speak for themselves.

Meeting with the DOJ - L->R Hugo Dwyer (VOR), Katrina Robertson (VOR), Rita Winkeler (VOR), James Fletcher (DOJ), Bo Tayloe (DOJ), Victoria Thomas (DOJ), Casey Henry (VOR), and Peter Kinzler (VOR).

Above: Katrina Robertson, Senator Tom Cotton (R-AR), Kimberly Dodd

Below: Marsha Hunt. Irene Tanzman, in front of Alexander Calder's "Mountain and Clouds" sculpture in the Hart Senate Office Building.

Above: Roslyn and David Leehey with a staffer outside the office of Illinois Rep. Mary Miller

Waiting for the meeting with the Administration for Community Living to begin. L->R Joanne St. Amand, President of VOR, Rita Winkeler, Hugo Dwyer, Katrina Robertson, and Casey Henry.

House Panel Green-Lights Sweeping Cuts To Medicaid Despite Outcry From Disability Advocates

By Michelle Diament, Disability Scoop. May 15, 2025

In a marathon session marked by the arrest of dozens of disability rights activists, Republicans in the U.S. House of Representatives pushed ahead with plans to drastically reduce Medicaid spending.

The House Energy and Commerce Committee voted 30 to 24 on Wednesday to send the measure to the full House.

The plan, which is part of a broad reconciliation bill designed to make good on President Donald Trump’s domestic agenda, calls for imposing work requirements on many Medicaid beneficiaries, mandating that states check individuals’ eligibility for the program more frequently and other changes.

The Congressional Budget Office estimates that the measure would reduce health spending — much of which comes from Medicaid — by at least $715 billion and leave 8.6 million people without health insurance. Savings from Medicaid and elsewhere would help offset an extension of tax cuts from Trump’s first term and support other administration priorities.

The oftentimes testy hearing, which spanned more than 26 hours, started off with protesters chanting “no cuts to Medicaid.” U.S. Capitol Police arrested 26 demonstrators, including 25 members of the disability rights group ADAPT, pushing many out of the hearing room in their wheelchairs.

“Cuts to Medicaid will mean I lose services, or have them cut,” said Latoya Maddox of Philadelphia ADAPT, one of 150 activists with disabilities from more than 20 states who came to Capitol Hill to speak out. “If I lose my services, my attendants who have families to support, don’t get paid. If my services get cut, it will mean I can’t work because there is no one to help me bathe and dress for work. If I can’t work, I won’t be able to support my son or pay my rent, and I will be evicted and forced into a nursing home where I will lose my freedom and control over my life. I am here fighting for my life!”

Republicans said that their bill will end “waste, fraud and abuse” in Medicaid and maintain coverage for those who need it.

“Our priority remains the same: strengthen and sustain Medicaid for those whom the program was intended to serve: expectant mothers, children, people with disabilities and the elderly,” said Rep. Brett Guthrie, a Kentucky Republican who chairs the committee.

The bill does not overtly detail cuts to services for people with disabilities, but Democrats said there is no doubt the plan would do just that.

“To all my colleagues who say you’re cutting waste and fraud, Medicaid is 22% more cost-effective than any private insurance plan,” said Rep. Debbie Dingell, D-Mich., who highlighted the family of a 6-year-old with Down syndrome named George who came to the hearing. “We have to protect George, other children, seniors in nursing homes and people with disabilities. Please don’t say you’re not going to hurt them, because many things in this bill are a back-door way of doing so.”

Continued

Opinion: GOP’s Stealth Medicaid Cuts Mean Millions Will Lose Coverage

By Ed Kilgore, New York Magazine, May 15, 2025

After a 26-hour marathon committee “markup” session (which began with angry protests by Medicaid advocates that led to 26 arrests), the House Energy and Commerce Committee approved its portion of the budget-reconciliation legislation on a party-line vote. It produced $880 billion in “savings” for Donald Trump’s “big, beautiful bill.” Most of that ($715 billion, to be exact) will come from Medicaid, the large and very popular federal-state program that provides health insurance for low-income families and individuals, including some long-term care for seniors.

E&C chairman Brett Guthrie’s “mark” for what he steered through his committee was released a couple of days ago and showed that he had managed to avoid some of the more blatant, and therefore controversial, ways of administering Medicaid cuts. There’s no “per capita cap” on Medicaid expenditures, a cost-shifting device that was in the first Trump administration’s failed Obamacare repeal legislation of 2017. And there’s no general reduction in the federal “match” rate paid to the 41 states that signed up for the expanded Medicaid coverage made available in the Affordable Care Act, mostly to cover low-income people without dependent children. Either of these methods would have produced more certain and more substantial Medicaid “savings” but would have also been easy for Democrats to describe and demonize, and for Republican governors and state legislators to oppose, loudly or quietly.

So Guthrie came up with Medicaid cuts that could be described as something other than cuts. There are mandatory work requirements that will inevitably eliminate eligibility for a significant number of beneficiaries who don’t meet very specific exemptions. There are additional eligibility “checks” that will snarl coverage for some beneficiaries in red tape. There are restrictions on provider taxes that many states use to finance their own share of Medicaid expenditures. And there are new “cost-sharing” requirements — meaning out-of-pocket payments — for beneficiaries with incomes just above the federal poverty level.

Republicans tend to call all such measures simply efforts to address “waste, fraud, and abuse,” so they can claim to have avoided the Medicaid cuts that Trump has occasionally foresworn. But according to a preliminary estimate by the nonpartisan Congressional Budget Office, the Medicaid provisions would cause at least 10.3 million people to lose Medicaid coverage. The exact damage to Medicaid will depend on the extent to which states are willing to absorb increased costs without restricting eligibility or coverage, but the entire “big, beautiful bill” is going to wreak havoc on state budgets in a variety of areas (though Medicaid is far and away the largest federal-state program). Hospitals and health clinics that can’t absorb reduced payments could go out of business altogether.

The House Budget Committee is expected to present the entire reconciliation bill as early as Friday, May 16, with a House vote on it planned for some point in the next two weeks. A big part of the game now will involve efforts to keep Republican defections over Medicaid to zero. That means Republican leadership will continue to placate both swing-district members who want to pretend they’re not cutting Medicaid and House Freedom Caucus types who want the largest and most conspicuous Medicaid cuts they can get. The latter are already howling about the inadequacy of the Medicaid cuts Guthrie’s committee has adopted, and particularly its decision to delay implementation of the work requirements until 2029 (which makes sense given how difficult it will be for states to set up and monitor compliance with these requirements). Meanwhile, Democrats can be expected to emphasize the number of people directly or indirectly losing their health insurance and the gimmicky nature of many reforms. As Politico explained, they really went after the work requirements, which sound reasonable but really haven’t been in practice:

Many Democratic committee members pointed to case studies in Arkansas and Georgia, the only states granted federal permission to enact Medicaid work requirements. Under Arkansas’ rules, thousands of low-income people lost coverage and the state saw no boost in employment. Georgia’s program has also struggled, enrolling a fraction of the anticipated population.

Taking such a policy national, lawmakers argued, would be similarly disastrous, imposing expensive bureaucratic burdens on states to determine eligibility and making millions of people who can’t navigate the red tape uninsured.

An underlying and very important point of debate is the planted axiom in Republican rhetoric that people on Medicaid can be divided into those who deserve it and those who don’t, with coverage losses limited to the latter. Democrats will be sure to argue that expanded Medicaid coverage is good for everybody, in part because it keeps otherwise uninsured people to show up in emergency rooms with untreated health conditions.

But Democrats aren’t the only ones who may object to cuts advertised as assaults on “waste, fraud, and abuse.” The Senate will ultimately have to approve Medicaid cuts, and MAGA Republican senator Josh Hawley made it clear this week in a New York Times op-ed that he’s for more, not less, coverage of the working-class people most likely to lose benefits if Medicaid takes a major hit. (See article below)

Read the full article here

Josh Hawley: Don’t Cut Medicaid

Opinion - Guest essay by Sen. Josh Hawley (R-MO), The New York Times, May 12, 2025

Polls show Democrats down in the dumps, at their lowest approval level in decades, but we Republicans are having an identity crisis of our own, and you can see it in the tug of war over President Trump’s “one big, beautiful bill.” The nub of the conflict: Will Republicans be a majority party of working people or a permanent minority speaking only for the C-suite?

Mr. Trump has promised working-class tax cuts and protection for working-class social insurance, such as Medicaid. But now a noisy contingent of corporatist Republicans — call it the party’s Wall Street wing — is urging Congress to ignore all that and get back to the old-time religion: corporate giveaways, preferences for capital and deep cuts to social insurance.

This wing of the party wants Republicans to build our big, beautiful bill around slashing health insurance for the working poor. But that argument is both morally wrong and politically suicidal.

Let’s begin with the facts of the matter. Medicaid is a federal program that provides health care to low-income Americans in partnership with state governments. Today it serves over 70 million Americans, including well over one million residents of Missouri, the state I represent.

As for Missouri, it is one of 40 Medicaid expansion states — because our voters wanted it that way. In 2020, the same year Mr. Trump carried the Missouri popular vote by a decisive margin, voters mandated that the state expand Medicaid coverage to working-class individuals unable to afford health care elsewhere. Voters went so far as to inscribe that expansion in our state Constitution. Now some 21 percent of Missourians benefit from Medicaid or CHIP, the companion insurance program for lower-income children. And many of our rural hospitals and health providers depend on the funding from these programs to keep their doors open.

All of which means this: If Congress cuts funding for Medicaid benefits, Missouri workers and their children will lose their health care. And hospitals will close. It’s that simple. And that pattern will be replicated in states across the country.

Continued

State-Level Context for Federal Medicaid Cuts of $625 Billion and Enrollment Declines of 10.3 Million

By Rhiannon Euhus, Elizabeth Williams, Alice Burns, and Robin Rudowitz, KFF, May 16, 2025

The Energy & Commerce Committee passed a reconciliation bill out of committee on May 14 after 26.5 hours of debate. Based on draft reconciliation language, the Congressional Budget Office (CBO) released preliminary estimates showing the proposals would reduce federal Medicaid spending by $625 billion. While there are a number of policy changes, three changes account for the vast majority of the savings: requiring states to implement work requirements for the expansion group, increasing barriers to enrolling in and renewing Medicaid coverage, and limiting states’ ability to raise the state share of Medicaid revenues through provider taxes. Building on earlier KFF analysis, this analysis puts this magnitude of federal funding cuts into context by showing how the cuts relate to states’ budgets and exploring the potential effects on Medicaid enrollment by state. Cuts of $625 billion will force states to make tough choices: maintain current spending on Medicaid by raising taxes or reducing spending on other programs; or cut Medicaid spending by covering fewer people, offering fewer benefits, or paying providers less.

Key Take-Aways

• The three biggest sources of federal Medicaid savings in CBO’s preliminary estimate of the Energy and Commerce reconciliation package account for nearly 90% of the total savings and include:
• Mandating that adults who are eligible for Medicaid through the ACA expansion meet work and reporting requirements ($300.8 billion);
• Repealing the Biden Administration’s rule simplifying Medicaid eligibility and renewal processes ($162.7 billion); and
• Establishing a moratorium on new or increased provider taxes ($86.8 billion).
• Provisions that would only apply to states that have adopted the ACA expansion account for $374.2 billion, or 60% of the total federal savings.
• Federal cuts to states of $625 billion over 10 years (or $62.5 billion per year) would represent 20% of total state-financed Medicaid spending per resident. By state, the cuts as a share of Medicaid spending per resident range from 6% in Wyoming and 8% in Florida to 50% and 48% in Louisiana and Kentucky, respectively.
• Proposed federal cuts represent 4% of state taxes per resident. If states opted to raise tax revenues to offset the entire amount of federal Medicaid reductions states would need to increase taxes by 4% overall, with state-level increases ranging from 1% in Kansas and Wyoming to 11% in Louisiana and 10% in Kentucky.
• States could instead make cuts to other state programs to offset federal Medicaid reductions. Proposed federal cuts represent 13% of state education spending per pupil. If states opted to cut education spending, the largest source of expenditures from state funds, to offset the entire amount of federal Medicaid reductions, cuts per pupil would range from 2% in Wyoming and 3% in Kansas to 36% in Louisiana and 32% in Kentucky.
• CBO estimates that 10.3 million people will lose Medicaid but that reflects state responses in the aggregate.
• The most heavily affected states include: Washington, Virginia and Montana. In each of these states, Medicaid enrollment could decrease by 15% to 32%.

Read the full article here

Medicaid Payments Barely Keep Hospital Mental Health Units Afloat. Federal Cuts Could Sink Them.

By Tony Leys, KFF Health News, May 12, 2025

SPENCER, Iowa — This town’s hospital is a holdout on behalf of people going through mental health crises. The facility’s leaders have pledged not to shutter their inpatient psychiatric unit, as dozens of other U.S. hospitals have.

Keeping that promise could soon get tougher if Congress slashes Medicaid funding. The joint federal-state health program covers an unusually large share of mental health patients, and hospital industry leaders say spending cuts could accelerate a decades-long wave of psychiatric unit closures.

At least eight other Iowa hospitals have stopped offering inpatient mental health care since 2007, forcing people in crisis to seek help in distant facilities. Spencer Hospital is one of the smallest in Iowa still offering the service.

CEO Brenda Tiefenthaler said 40% of her hospital’s psychiatric inpatients are covered by Medicaid, compared with about 12% of all inpatients. An additional 10% of the hospital’s psychiatric inpatients are uninsured. National experts say such disparities are common.

Tiefenthaler vows to keep her nonprofit hospital’s 14-bed psychiatric unit open, even though it loses $2 million per year. That’s a significant loss for an organization with an overall annual budget of about $120 million. But the people who use the psychiatric unit need medical care, “just like people who have chest pains,” Tiefenthaler said.

Medicaid covers health care for about 72 million Americans with low incomes or disabilities. Tiefenthaler predicts that if some of them are kicked off the program and left without insurance coverage, more people would delay treatment for mental health problems until their lives spin out of control.

“Then they’re going to enter through the emergency room when they’re in a crisis,” she said. “That’s not really a solution to what we have going on in our country.”

Continued

In New Letter, Mayors Raise Concern Over Proposed Cuts to Medicaid and Effect on Public Safety in Cities

The United States Conference of Mayors, May 9, 2025

Washington, D.C.— Today, United States Conference of Mayors (USCM) President Columbus (OH) Mayor Andrew Ginther and USCM CEO and Executive Director Tom Cochran sent a letter to the House Energy & Commerce Committee, calling on its members to preserve and strengthen Medicaid as a matter of public safety. Cuts to Medicaid are currently being considered by Congress that will hurt beneficiaries and jeopardize the progress made on public safety in American cities. Medicaid supports programs that address behavioral health and substance abuse, helping those in crisis connect with providers and keeping police officers focused on violent crime.

The letter reads in part, “Our police officers and EMTs are often the first on the scene when someone is experiencing a mental health crisis, struggling with addiction, or suffering from a preventable health condition that has gone untreated. These are not simply public health issues—they are public safety challenges. Without access to the ongoing care that Medicaid provides, these challenges grow more severe, more dangerous, and more costly for local governments.”

Continued here

Full text of the letter is linked here:

Conservatives block Trump agenda bill from advancing in major setback for GOP leaders

By Scott Wong, Sahil Kapur, Syedah Asghar and Melanie Zanona, NBC News, May 16, 2025

The GOP-led House Budget Committee voted to reject a sweeping package for President Donald Trump's agenda on Friday, dealing an embarrassing setback to Speaker Mike Johnson, R-La., and Republican leaders.

The vote in the Budget Committee was 16-21, with a band of conservative hard-liners who are pushing for steeper spending cuts joining all Democrats in voting against the multitrillion-dollar legislation, leaving its fate uncertain.

The Republicans who voted "no" were Reps. Chip Roy of Texas, Ralph Norman of South Carolina, Andrew Clyde of Georgia and Josh Brecheen of Oklahoma. Rep. Lloyd Smucker of Pennsylvania changed his vote from "yes" to "no," he said, as a procedural move to allow Republicans to call the bill up again.

During the hearing, Roy fired a warning shot at Republican leaders, saying he opposes the bill as written because it will increase the deficit.

“I have to now admonish my colleagues on this side of the aisle. This bill falls profoundly short. It does not do what we say it does with respect to deficits,” Roy said. “That’s the truth. Deficits will go up in the first half of the 10-year budget window and we all know it’s true. And we shouldn’t do that. We shouldn’t say that we’re doing something we’re not doing.”

“This bill has back-loaded savings and has front-loaded spending,” Roy added. “I am a no on this bill unless serious reforms are made today, tomorrow, Sunday. Something needs to change or you’re not gonna get my support.”

After the vote tally was read, Rep. Jodey Arrington, R-Texas, the committee chair, adjourned the hearing and told members they would not be meeting again this weekend.

“It’s like the last day of third grade. We get to go home,” Rep. Glenn Grothman, R-Wis., quipped after the hearing.

Continued

IDD Providers Increasingly Swallowed Up By Private Equity

By Michelle Diament, Disability Scoop, May 12, 2025

In a major shift, disability service providers across the nation are being acquired by investment firms seeking a quick profit, raising serious questions about implications for care.

Traditionally, providers of residential care, home health, personal assistance and other services for people with intellectual and developmental disabilities were nonprofit or religious organizations. But, a new report from the Private Equity Stakeholder Project, a nonprofit watchdog organization, details how private equity firms have moved to consolidate local and regional providers into large, national entities in recent years with an eye toward maximizing profit.

Between 2013 and 2023 alone, there were more than 1,000 private equity acquisitions of disability and elder care providers, the report found. As a result, multiple private equity firms now employ tens of thousands of people serving those with disabilities. Often the firms operate under subsidiaries with various names, obscuring their ownership.

Two providers — Sevita and Help at Home — are owned by the same private equity firms and together they have more than 100,000 employees located in nearly every state, according to the report.

“Firms typically seek to double or triple the value of their investment in 4-7 years, which is challenging to do in IDD services without cutting costs in a way that compromises the quality of care,” the report finds. “In an industry where companies provide such encompassing and essential services as IDD services and supports, private equity’s entrance poses a serious threat.”

The report cites multiple cases where state investigators have uncovered mistreatment or hazardous conditions at private equity-owned IDD providers involving the use of restraints, medication management, severe understaffing and more. In some cases, these issues have endangered individuals with disabilities or even led to death.

In less extreme examples, the report authors note that cutting staff or limiting access to transportation could mean that a group home resident is unable to attend a weekly bowling night or take a job across town, even when such activities are called for in their person-centered service plan and are necessary for the home to qualify as a community-based setting under Medicaid rules.

All the while, the report details how private equity firms have managed to net hundreds of millions of dollars by having disability service providers they own take on debt even as care standards declined.

“Private equity firms are fundamentally altering these services in ways that put some of the most vulnerable members of our communities at risk,” said Eileen O’Grady, director of programs at the Private Equity Stakeholder Project and the lead author of the report. “The private equity model prioritizes short-term financial gains, often at the expense of staffing levels, service quality and even basic client safety.”

Continued

People with intellectual disabilities died and were injured at Pa. group homes. Regulators are taking action.

By Harold Brubaker, The Philadelphia Inquirer, May 12, 2025

At a group home for people with disabilities, a resident languished on a bedroom floor for 12 hours, too weak to move. By the time they got to the hospital last spring, they had no feeling in their fingers and couldn’t speak. The person eventually needed a partial arm amputation and to be fed through a tube.

Another resident died in December at a Berks County home operated by the same nonprofit, Supportive Concepts for Families, after months of inadequate medical care and losing dangerous amounts of weight. The person couldn’t stand on the only scale at the house, so staffers recorded inaccurate weights.

At least four deaths at Supportive Concepts homes were investigated by state regulators in the span of a year.

That was just the start. Investigators also confirmed four serious injuries, 11 cases of abuse, 77 cases of neglect, four cases of exploitation, two suicide attempts, and two rights violations at its homes in the year ended Feb. 28, according to data from the Pennsylvania Department of Human Services.

The Inquirer requested the tally, as the state does not routinely release information on its investigations into group homes.

The pattern of neglect led to state sanctions for Supportive Concepts last month and is raising questions about its fast-growing owner, Inperium Inc., a corporate parent for a constellation of human services nonprofits. Inperium has more than doubled the number of group homes it operates after acquiring Philadelphia’s financially ailing Resources for Human Development last year.

Inperium CEO Ryan D. Smith started his career in human services three decades ago at Supportive Concepts. Its model of profiting from government-funded care provided the springboard for the creation of Inperium in 2016. Since then, Inperium has acquired 40 nonprofits. It now operates in behavioral health, children’s services, and substance-use disorders treatment, in addition to intellectual disabilities services.

“This is heartbreakingly distressing to me to see this type of abuse all from the same provider and to also see it all occurring within a short time frame,” said Leonard G. Villari, a Philadelphia lawyer who has represented many people with intellectual disabilities and their families in abuse and neglect cases.

Inperium and Supportive Concepts, both based in Reading, did not respond to requests for comment.

It is unusual to see so many deaths and serious harm events in the same organization, advocates for people with disabilities say. Few details are known about the incidents, because the state heavily redacts its reports to protect residents’ privacy.

Last month, Pennsylvania regulators barred Supportive Concepts from accepting new residents in its 103 group homes for intellectually disabled people in Northeastern Pennsylvania and prohibited it from opening new homes in that 15-county region.

Continued

The two stories below are the third and fourth installments in a series from NorthJersey. com, "Hidden At Home"

Hidden at Home: Wrong doses. Missed doses. Medication errors in group homes pose grave risks

By Jean Rimbach and Ashley Balcerzak, North Jersey .com, May 10, 2025

Key Points:

• NJ group homes are not required to have nurses or other licensed medical professionals dispense medications or oversee their delivery.
• Many NJ group home residents have a complex mix of prescriptions for their physical and behavioral needs.
• There were 1,620 confirmed cases of medication errors and medication going missing in NJ group homes from 2019 to 2024.

Katherine Anne Moronski was excited about the next phase of her life.  

After seven years at a therapeutic boarding school in Massachusetts, the young woman with autism — known affectionately as Katie — was going to live at a group home in New Jersey near her family. 

It was, her mother said, going to be “the year of yes.” 

“She was going to take advantage of every opportunity that was offered to her,” Lynne Moronski said. 

In June 2024, two days after moving into a home run by Broadstep in Newton, Katie was dead.  

She was 21 years old.  

Katie’s death was ruled an accident. The cause according to her autopsy: “Acute intoxication due to Bupropion, Olanzapine, Fluoxetine and Lorazepam.” 

The first three drugs were part of Katie’s regular medication regimen, which the group home is responsible for dispensing. Records show the lorazepam was administered in a hospital emergency room in response to a seizure.  

“She envisioned a future for herself,” Lynne said. “As we get really upset, obviously, it's not just that she died, it's that she was overdosed, and that's just really tough to take. That someone else took away her future is just really difficult for us to palate.”  

RHA Health Services, which owns Broadstep, did not answer questions about Katie’s death.  

Huge responsibility

Group homes are not required to have nurses or other licensed medical professionals dispense medications or oversee their delivery. The same workers who provide other routine care — bathing, feeding and changing clothes — are also responsible for dispensing prescription and over-the-counter drugs, keeping records and reporting mistakes. 

Many group home residents have a complex mix of prescriptions for their physical and behavioral needs. Katie’s medications numbered about 30, taken at varying intervals throughout the day, some on an as-needed basis. 

Dispensing medication is a “huge responsibility” being put on frontline workers — called direct support professionals, or DSPs — who have no license or certification at stake, said Vincent Giardina, a former chief of investigations for the Department of Human Services, the state agency that oversees the group home system.

“People who are not medical professionals sometimes don't understand the importance of keeping good records, keeping track of the medication, making sure people are getting what they need,” he said. 

In addition to being autistic, Katie was bipolar and struggled with depression and obsessive compulsive and attention deficit hyperactivity disorders. She was also prescribed medications for asthma and constipation. And she was allergic to dairy and nuts, so anaphylaxis — a life-threatening allergic reaction — was also a concern, and EpiPens had to be kept on hand. 

And like many group home residents, Katie could not administer her own medications.  

Her mother, a nurse, was diligent about supplying the group home with information in writing and in person. Lynne recalled that it took hours to compile the extensive medical and educational history the program required. 

“I wanted to be absolutely sure that they understood the complexity of Katie's routine,” she said. 

But Lynne couldn’t know the extent of medication errors in New Jersey’s group home system. 

The state and group homes confirmed 1,620 cases of medication errors and medication going missing from 2019 to 2024, according to data obtained by NorthJersey.com through a public records request. Of those cases, 57 were listed as having a “serious effect,” and another 1,305 a “potentially serious effect.”

Read the full article here 

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Hidden at Home: NJ group home staff are overburdened and underpaid, leading to care lapses

By Ashley Balcerzak and Jean Rimbach, North Jersey .com, May 13, 2025

Key Points:

• Workers on the front lines of NJ’s group home system provide critical care amid chronic understaffing, low pay, and a lack of preparation and support that puts them – and residents – in jeopardy.
• Direct support professionals provide care to NJ group home residents including feeding, bathing, dispensing medication, helping them use the bathroom and bringing them to doctor's appointments.
• Police reports show fights between NJ group home workers, and theft by staff of money and other items from residents. They also detail overwhelmed staff left to care for multiple residents alone.

A caregiver left alone struggled to save four women with disabilities — only one who could walk unattended — when fire broke out at their group home. 

Another group home worker said she was “thrown to the wolves,” forced to learn on the fly that one resident was prone to seizures and another would smear feces on walls. 

An aide with a criminal record pulled a knife on a colleague who confronted him for having sex on the job with a woman he brought to the group home.  

Workers on the front lines of New Jersey’s group home system provide critical care for adults with intellectual and developmental disabilities amid chronic understaffing, low pay, and a lack of preparation and support that puts them — and vulnerable residents — in jeopardy.  

t's not a simple job. It is very complex, one that I would not do, or could not do,” said Valerie Sellers, CEO of the New Jersey Association of Community Providers. 

And they’re supposed to do it all for little more than New Jersey’s $15.49 minimum wage — an average of about $20 an hour, according to the state.  

“I have staff that are begging for overtime just so they can pay their rent,” Lynne Rockstroh, group home director at a Diocese of Paterson home, told state officials during a public listening session on direct care workforce needs. 

Staffers churn through a system that has been slow to professionalize — certifications, licensing or other credentialing are not prerequisites for the job. New Jersey’s turnover rate for DSPs is 36%.

Desperate for staff, agencies lower standards; resident care suffers. Police reports show fights between group home workers, and theft by employees of money, medication and other items from residents. Worse, families point to caregivers who hurl insults such as “retard,” ignore resident needs, sleep on the job and strike residents in anger.   

“It was like they were just hiring people just for a body in the house,” said Maurica James, a former manager at Community Options.  

Longstanding issues with staffing were only exacerbated during the COVID-19 pandemic.  

“If you could fog a mirror, they were putting you in a house and training you along the way,” said David Wyher, the president of Delta Community Supports. “That is something that obviously led to a lot of those issues for a lot of different organizations.” 

What’s more, companies trying to entice potential workers leave out critical tasks. Not being up front about all the responsibilities increases turnover and leaves new staff members unprepared. 

“When they do hiring, they need to let everyone know, no matter where you work at, if there's diaper changing or what have you, you have to do it,” said Iris Mayfield, a former DSP at Allies. “If that's something you cannot do, we cannot hire you.”  

Workers who didn’t want to change diapers would leave the residents soaked or in their excrement so the next shift would do it instead, Mayfield said, echoing concerns expressed by other staff across the system.  

“They hire these young kids straight out of high school — 19, 20 years old,” Mayfield said. “They don't know nothing. The training when I started was two weeks straight. Now it’s only four to five days, and they put them out in the field. You got these young girls, saying ‘I'm not wiping nobody's a**. I'm not cleaning up no s***. They didn't tell me this.’”   

“This is why,” she said, “we have a lot of failures.”   

Persistent problems

Many of the issues the workforce faces today were baked into the system decades earlier, when the U.S. began shifting people with disabilities out of large institutions segregated from the public and into group homes scattered throughout communities. 

“Historically it has been seen as an unskilled, entry-level type of job that basically anybody could do,” said Joseph M. Macbeth, president and CEO of the National Alliance for Direct Support Professionals. “In fact, this job requires a high level of judgment, independent decision-making abilities, dealing with crisis situations.” 

Yet he said salaries are “shameful,” even in New Jersey, where the average wage for a DSP is the third-highest in the country. Workers are viewed as expendable and “aren’t trained for the complexity of the work,” he added. 

Continued

Years-long waiting list remains for Kentucky intermediate care facilities

Wave3, May 12, 2025,

(VIDEO ONLY - Click Here to watch)

Volunteer advocates meet with state senators’ staffs in start of effort to preserve Wrentham and Hogan centers

By Dave Kassel, The COFAR Blog, May 13, 2025

The fight to preserve the Wrentham and Hogan care centers in Massachusetts began this past Friday with a visit to the State House of a dozen advocates and family members of persons with intellectual and developmental disabilities.

Our group, which included several COFAR members, held meetings with legislative aides to State Senators Paul Feeney and Rebecca Rausch. Rausch’s district includes the Wrentham Developmental Center.

Jim Durkin, legislative director for AFSCME Council 93, a state-employee union in Boston, spoke to us prior to the Friday meetings, noting that AFSCME is currently deeply involved in fighting to save the Pappas Rehabilitation Hospital.

“AFSCME is fully behind your efforts to preserve Wrentham and Hogan, which are vital to the fabric of care in this state,” Durkin said. “Right now, we are fighting the battle for the Pappas Hospital, but we will be working with you to make sure that the ICFs are protected as well.”

The Healey administration’s move to close Pappas and allow Wrentham and Hogan to die by attrition are all part of the same effort to eliminate state-run care under what we have long argued is a faulty assumption that it will save the state money.

The first meeting we had on Friday was with Shane Correale, legislative director for Senator Feeney. We have asked Feeney to draft legislation that would open the doors at Wrentham and Hogan to new admissions and establish housing on the campuses of the facilities for elderly family members of the residents.

Continued

Connecticut - Group home workers join with nursing home workers in strike threat

By Laura Tillman, CT Mirror, May 15, 2025

Members of SEIU 1199 who work in group homes warned Gov. Ned Lamont on Thursday that they were planning to strike if a negotiation over wages isn’t reached by May 27.

Following a press conference, members of the union walked to Lamont’s office in the capitol on Thursday and delivered strike notifications to a member of his staff. They say it’s impossible to survive on the paltry $18.42 an hour that many are paid for work that is stressful and even dangerous.

Unless the groups reach an agreement, those 1,700 workers will join the 6,000 nursing home workers who have already pledged to strike, in what the union said would be the largest strike of health care workers in Connecticut history. Nursing home workers have demanded a pathway to increasing pay to $30 per hour and safe staffing levels.

Earlier this month, Lamont successfully delayed the strike deadline from May 19 to May 27 after meeting with nursing home and group home workers. Lamont said he “expressed to them that I agree that their current wages do not match the value of the service they provide and that I join them in their effort to seek an increase in their compensation.”

At the press conference on Thursday, Suzanne Clark, Secretary Treasurer of SEIU 1199NE, said that workers were being pushed to the brink at intense, low-wage jobs just to keep their families fed and housed.

“They’re working 60, 70, 80, frankly upward of 100 hours a week, just to get by. Not because they want to, but just to put food on the table, to pay rent,” Clark said.

Continued

North Dakota - Federal policy shifts impact Minot’s most vulnerable

A concerning pattern of federal policy shifts and budget proposals is casting a shadow over essential services that support Minot’s most vulnerable residents — our elderly neighbors, individuals with disabilities and families struggling with poverty. These are not abstract debates unfolding in distant Washington; they are changes with profound, real-world consequences for people in our community.

Many of these proposed and emerging policies align with plans detailed in initiatives such as Project 2025, a comprehensive blueprint for restructuring the federal government. Regardless of their origin, the tangible effects of these shifts on crucial support systems demand our community’s urgent attention.

The recent news that 23 employees at the North Dakota Center for Persons with Disabilities (NDCPD) at Minot State University are being laid off — with some already having lost their jobs — is a stark local example of this broader trend. These job losses, attributed to federal funding changes and new policy directions, show how decisions made in Washington directly affect the availability of services for our most vulnerable neighbors.

The human impact is real. Kyle Erickson, a research associate at NDCPD who has cerebral palsy, said the services offered “make it a little bit easier” to navigate a world not always built for people with disabilities. With funding for many programs “being paused — or soon may be completely ending,” as MSU President Steven Shirley said, the lifelines that Erickson and others depend on are increasingly at risk.

The challenges faced by NDCPD reflect a wider reevaluation of federal support for vital human services. Proposed changes extend to the Administration for Community Living, a key funder of services like Meals on Wheels. Discussions surrounding the Individuals with Disabilities Education Act, often framed in terms of “flexibility,” raise concerns among advocates about the erosion of protections for students with disabilities. Cuts to housing support through the Department of Housing and Urban Development, and changes to nutrition programs such as the Commodity Supplemental Food Program, could further strain families already struggling to meet basic needs.

Adding another layer of pressure is the Department of Government Efficiency, or DOGE — an initiative focused on reducing costs. Actions such as freezing health care grants and altering the management of federal funding opportunities have created instability for service providers. NDCPD Director Lori Garnes described the resulting “storm clouds of uncertainty,” noting that disrupted communication with federal agencies hampers long-term planning and threatens the center’s ability to retain staff and sustain services.

Further compounding these concerns are proposed sweeping changes to Medicaid, reportedly included in legislative frameworks like the “One Big Beautiful Bill.” Provisions include nationwide work requirements, increased cost-sharing and deep cuts to federal spending on the program. In North Dakota — where roughly one in seven residents rely on Medicaid — such changes could have serious consequences. Access to health care for seniors, children, working families and people with disabilities could be jeopardized, along with the financial viability of rural hospitals and clinics.

The loss of 23 jobs at NDCPD is more than a local workforce issue. It signals a diminished capacity to serve those who rely on developmental programs, education and critical support services. As federal policies continue to evolve, our community must recognize their real-world impact and advocate for the support systems that ensure a better quality of life for all. The well-being of Minot — and of those who depend on these essential services — hangs in the balance.

Read the full article here

As Maine diversifies, so does its health care workforce

By Rose Lundy, the Maine Monitor, May 11, 2025

Amanda Karomba’s family fled the 1994 genocide in Rwanda and immigrated to Maine when she was an infant. Three decades later, Karomba operates nearly 30 group homes in the Lewiston-Auburn area serving adults with intellectual and developmental disabilities, staffed primarily by people of color who are recent immigrants and identify as “New Mainers.”

Karomba’s organization, Happy Haven, is an example of the growing racial and ethnic diversity of Maine’s health care workforce.

Between 2014 and 2024, the number of Black, American Indian, Asian and Native Hawaiian or Pacific Islander employees across the health care sector increased 143 percent, while the number of White employees increased by less than half a percent, according to a Maine Monitor analysis of data from the state Department of Labor and U.S. Census Bureau. People of color — who made up about 4 percent of the workforce in 2014 — now make up 10 percent.

Experts and health care providers said this trend mirrors the state becoming more racially diverse, driven largely by an influx of new immigrants who often turn to health care as a way into the workforce, drawn by flexible hours and lower barriers to entry.

And it comes at a time when Maine is facing a severe shortage of health care workers — particularly direct care workers, who assist people with hands-on personal care like bathing, eating, housekeeping and managing medications.

“Without New Mainers, we wouldn’t be able to uphold our workforce,” Karomba said.

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New York - For the love of care: Brooklyn nonprofit group home grapples with staffing crisis

In New York’s group homes, the work is a labor of love, but for many caregivers, the love isn’t enough to make ends meet.

The direct support professional (DSP) workforce — essential workers who care for people with intellectual and developmental disabilities (I/DD) — is facing a labor crisis.

According to a report by the New York Disability Advocates, a statewide coalition of more than 300 nonprofit organizations serving over 130,000 New Yorkers with I/DD, nonprofit providers care for 85% of individuals with I/DD, yet 20,000 direct care positions remain vacant. As a result, 38% of nonprofit providers have been forced to reduce services or programs. The statewide annual workforce turnover rate of 30% costs nonprofit agencies an estimated $100 million each year.

Harvard Public Health reports the trend is expected to continue. In a 2024 article, the publication projected that 4.6 million home care jobs will go unfilled by 2032.

The causes of the shortage are multifaceted. In addition to low wages, limited advancement opportunities, and poor working conditions, the job is often physically and emotionally demanding. The COVID-19 pandemic further exacerbated the crisis.

Joseph Riley, CEO and executive director of the Guild for Exceptional Children, told Brooklyn Paper that the organization’s workforce has dropped from more than 530 employees in 2019 to 460. 

Families do not pay to place their loved ones in group homes. In fact, many residents do not even have family available to care for them. Their medical needs are typically paid for by government programs such as Medicaid, which provides health insurance and access to long-term care for nearly 7 million New Yorkers. 

Manhattan Assembly Member Rebecca Seawright, chair of the assembly’s aging committee and former chair of the people with disabilities committee, said retaining staff at nonprofit-run group homes would be improved if the salaries were higher. 

Last month, she reintroduced A7604, a bill to provide wage enhancements for DSP workers. 

“New York’s delicate infrastructure of care for people with disabilities and/or older adults rests on the shoulders of nonprofit direct service professionals,” she said, adding that they deliver 85% of services to most New Yorkers with I/DD.

Read the full article here

Disabled workers caught in cuts

Decades of progress against discrimination seen to be at risk

By Kenya Hunter and Fatima Hussein, TAssociated Press via Arkansas Democrat Gazette, May11, 2025

Spencer Goidel, an Equal Employment Opportunity Specialist with the Internal Revenue Service who was notified his job would be eliminated as part of the government's efficiency cuts, shows his government ID in Boca Raton, Fla., April 16, 2025. (AP Photo/Daniel Kozin)



Spencer Goidel, a 33-year-old federal worker in Boca Raton, Fla., with autism, knew what he could be losing when he got laid off from his job as an equal employment opportunity specialist at the IRS.

Because of his autism spectrum disorder diagnosis, Goidel had been able to secure his spot as one of more than 500,000 disabled workers in the federal government under Schedule A, which allows federal agencies to bypass the traditional hiring process and pick a qualified candidate from a pool of people with certain disabilities.

His job, he said, was accommodating and enriching, and he wonders if he'll ever get another one like that in the private sector.

"A lot of people who are disabled, they came to the federal government because it was a model employer for disabled individuals, and now they have nowhere else to go," he told The Associated Press.

The irony, he says, is that his job was to help resolve workers' harassment claims before they escalated into full-blown lawsuits against the government. So much for reducing waste, he says.

For decades, the federal government has positioned itself as being committed to inclusive hiring and long-term retention across agencies. But as mass layoffs ripple through the federal workforce under President Donald Trump's Republican administration, disabled employees are among those being let go.

Amid the firings, rollbacks of accommodation guidance for businesses and skepticism of disability inclusion practices, advocates and experts wonder if the government's status as a "model employer" will hold true.

Trump has said he ended diversity, equity and inclusion programs in the government because people should be hired based on work quality and merit alone.

However, under Schedule A, candidates already have to be qualified for the position with or without an accommodation. They don't get a job solely because they have a disability.

Disability advocates point to a slew of statements from Trump administration officials that indicate they view disabled workers as a liability to the government.

Trump criticized the federal government's inclusion efforts in January when a midair collision between a plane and a helicopter near Reagan National Airport killed 67 people. Without evidence, he blamed the Federal Aviation Administration's targeted hiring of people with disabilities for the crash, saying that only "psychologically superior" air traffic controllers should work for the agency.

Kelly McCullough, legal director at Disability Law Colorado, said the messaging from the Trump administration could affect how seriously the private sector takes on disability inclusion efforts. Recently, she said, the nonprofit has received an uptick in disability discrimination complaints.

"It does make me wonder, if the federal government is setting this example, challenging these ideas of inclusion that have (had) long-standing support from the government ... is that trickling down?" she said. "Is that messaging getting to employers in other contexts?"

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Please share this offer with your loved one's

Direct Support Professionals!

VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!

Our loved ones' caregivers are essential to their health, safety, and happiness.

In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

info@vor.net

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.

[Please click on blue link to view information about the bill]

VOR SUPPORTS:

H.R.1950 - Rep. Mark Pocan (D-WI)

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. 

H.R.869 - Rep. Susie Lee (D-NV)

To require full funding of part A of title I of the Elementary and Secondary Education Act of 1965 and the Individuals with Disabilities Education Act.

H.R.1509 - Rep. Lori Trahan (D-MA)

Accelerating Kids' Access to Care ActTo 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.

S.752 - Sen. Chuck Grassley (R-IA)

Accelerating Kids' Access to Care Act - A bill to amend title XIX of the Social Security Act to streamline enrollment under the Medicaid program of certain providers across State lines.

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)

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



H.R.2598 - Rep Jared Huffman (D-CA)

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

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.  

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) amd sheltered workshops for indiviiduals with I/DD and autism.