January 17, 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 Regulatory 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

VOR's Winter Networking Meeting

January 27, 2025

4 pm Eastern / 3 pm Central / 2 pm Mountain / 1 pm Pacific

On Zoom

The topic for this meeting will be

Addressing the challenges and opportunities of the Second Trump Administration

and the 119th Congress

You must be a member of VOR to attend this meeting.

To register,

Please Click Here

You will receive confirmation of your registration.

A link to the Zoom meeting will be sent to you shortly before the event.

House Budget Committee Chair Pushes House Republican Caucus to Adopt His List of Draconian Medicaid Cuts

By Ediwin Park, Georgetown University McCourt School of Public Policy, January 11, 2025

According to press reports, at a January 4^th meeting of the House Republican caucus, House Energy and Commerce Committee Chair Brett Guthrie (R-KY) presented policy options to deeply cut federal Medicaid spending, including a proposal to convert Medicaid to a per capita cap, as part of budget reconciliation legislation this year. Now, according to a Politico article from January 10t^h, Representative Jodey Arrington (R-TX), chair of the House Budget Committee, is widely circulating among House Republicans a document with a list of mandatory spending cut proposals, including draconian cuts to Medicaid, that could be used to partially offset trillions of dollars in tax cuts for the wealthy and corporations and satisfy a pledge of House Republican leadership to make at least $2.5 trillion in cuts to mandatory spending as part of budget reconciliation. 

According to the document, the seven Medicaid proposals listed would together cut federal spending by $2.3 trillion over ten years (though the document does not indicate the basis of such cost estimates). These proposals are each described in only a few words but they seem to largely mirror the Medicaid cuts in the fiscal year 2025 budget resolution reported out of the House Budget Committee in March 2024 and in other House Republican and conservative budget plans. Based on the details of the Medicaid cut proposals in those plans, the Arrington document appears to propose the following:

• Converting Medicaid to a per capita cap. Under the current federal-state financial partnership, the federal government pays a fixed percentage of states’ Medicaid costs, whatever those costs are. A per capita cap would instead radically restructure Medicaid financing: states would receive only a fixed amount of federal Medicaid funding on a per-beneficiary basis, irrespective of states’ actual costs. These funding caps are typically designed to fail to keep pace with expected growth in health care costs in order to severely cut federal Medicaid spending, with those cuts growing larger and larger over time. Moreover, the caps would also fail to account for any unexpected cost growth such as from another public health emergency or a new, costly drug therapy, which would make the federal funding cuts even larger than originally anticipated. The document claims the proposal would cut federal spending by up to $918 billion over ten years.

Continued

A one-page list of Medicaid cuts proposed by Rep Arrington to offset the cost of renewing tax cuts was leaked to the press last week. The list may be downloaded here

Maryland - House Appropriations gets a crash course on potential cuts to Medicaid

By Danielle J. Brown, Maryland Mattters, January 14, 2025

No one knows for sure what cuts President-elect Donald Trump has in store for Medicaid after he is sworn in to his second term Monday. But Maryland officials are pretty sure it’s not going to be good for the state’s bottom line.

That was the takeaway from a House Appropriations Committee briefing Tuesday by Anne Braun, the operating budget manager with the Department of Legislative Services, who said cuts could end up costing from tens of millions to a couple billion if the state decided to pick up the affected services.

“There have not been any formal announcements or indications of changes to Medicaid, so I would just emphasize that these [projections] are considering possible changes,” Braun said.

Even with that level of uncertainty — or perhaps because of it — the committee needs to be prepared for any eventuality at a time when the state is grappling with a nearly $3 billion shortfall in the fiscal 2026 budget, said Del. Ben Barnes (D-Prince George’s and Anne Arundel), the chair of the committee.

“We thought this was important – given the uncertainty of the new administration,” Barnes said at the top of the meeting.

Medicaid is one of the biggest parts of Maryland’s budget, with the state spending $14.6 billion on the program, according to August 2024 data from the health policy research group KFF. Medicaid provides health care coverage to about a quarter of Maryland residents.

Medicaid is a joint federal-state health care plan that assists specific eligible populations, including low-income households, people with disabilities and certain senior populations. In most cases, the federal government reimburses states for 50% of the cost of care, but some programs — particularly for people who got coverage through the Affordable Care Act — are reimbursed up to 90%.

Trump has promised sweeping cuts to the federal budget, with few details so far on where those cuts might land. But some Republicans in Congress are floating ideas to cut trillions from federal spending, according to a report last week in Politico, which include cuts to Medicaid that could take the form of restructuring payments to states, restricting beneficiaries or adding work requirements to qualify for the program.

Braun said many of the potential changes would lead to financial burdens for the state or a loss of care for some residents.

[One possible cut] that has been discussed is to replace the federal match with other funding formulas, such as a block grant or per person funding. Under either plan, Maryland would get a designated amount of federal money that would be capped.

If the program went to a block grant, Braun said, the impact on state budgets “would vary drastically on how that grant or cap is designed and calculated.” It will be difficult to predict a precise impact without more details, she said, but any block grant design would likely cause the state trouble if there are greater economic struggles.

Read the full article here

Cuts to Medicaid Will Shift Costs to Families, Providers and Will Be Especially Harmful to Rural Communities

By Joan Alker, Georgetown University McCourt School of Public Policy, January 15, 2025

Medicaid is the backbone of many aspects of our health care system including paying for the majority of nursing home residents, covering 40 to 50 percent of children and births depending on where you live, people with disabilities and other low-income people. Medicaid covers almost 80 million people in total – roughly four times as many people as covered by the Affordable Care Act Marketplaces and considerably more than the roughly 48 million seniors covered by Medicare. This is particularly true in rural areas where a higher share of residents are covered by Medicaid. Rural areas face greater challenges in their health ecosystems as their residents have higher rates of chronic diseases, hospitals are operating on tighter margins, and provider shortages are more acute.

As we release our new report “Medicaid’s Role in Small Towns and Rural Areas”, Congressional leaders are making highly consequential decisions about the future of Medicaid — and in particular whether or not to impose crippling and draconian cuts. Medicaid’s future has quickly become one of the most consequential issues that members of Congress will soon decide upon. Documents leaked last week made clear that key House Republicans are considering $2.3 trillion (with a T!!) in Medicaid cuts – that equates to almost one-third of Medicaid spending.

Medicaid – our nation’s health care insurer for the most vulnerable people in society — is at the top of the list for cuts to generate revenue that Republicans are looking for to finance among other things, extending tax cuts which will disproportionately benefit the wealthy. As the report findings make clear, rural communities are at grave risk if substantial federal cuts are enacted.

Medicaid is a health insurance program that protects families and people from exposure to high medical costs. Medicaid is very good at this! Cuts to Medicaid, which is already a very lean payer in the health care system, will result in transferring cutting services and shifting costs to families and providers – in rural communities health care systems are already under enormous pressure and can ill afford any loss of resources.

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Please visit our interactive maps (below) and see what the data shows for your state:

Tennessee - Safety Net Advocates Bracing for Big Cuts in Medicaid, Food Stamps  

by David Waters, Institute for Public Service Reporting via Nashville Banner, January 16, 2025

When Ashlie Bell-Seibers hears about congressional plans to slash Medicaid spending, she thinks about children she knows in Tennessee.

Children like Asher, 12, who sees 17 specialists and who is able to live and be cared for at home because she receives special coverage through TennCare, the state’s Medicaid program.

Then there’s Claire, age 10, who was born with a rare genetic condition that required life-saving open-heart surgery covered by TennCare.

And Aundrea, 8, one of three children in her family with hearing loss, Her growing body requires new and expensive hearing aids covered by TennCare.

Trip, who died at age 2, and whose chemotherapy treatments were covered by TennCare.

“He would have suffered more and died sooner without those treatments,” said Bell-Seibers, who works to support children and youth with special healthcare needs as director of Family Voices of Tennessee at the Tennessee Disability Coalition in Nashville.

Bell-Seibers and other safety net advocates are bracing for severe cuts in federal programs that provide food and health care to millions of lower-income adults and children in Tennessee.

Republican congressional leaders are looking for $2.5 trillion in budget cuts to pay for tax cuts for wealthier individuals and corporations, among other priorities of the incoming Trump administration.

Two of the largest targets seem to be Medicaid (called TennCare here) and SNAP (formerly called food stamps).

“These are massive cuts, bigger than anything we’ve ever encountered,” Gordon Bonnyman, staff attorney and co-founder of the Tennessee Justice Center in Nashville, told dozens of safety net advocates in a zoom meeting last week. “They’re going to happen very fast and they’re going to hurt a lot of people.”

Bonnyman said the massive budget cuts will be “camouflaged” in the arcane congressional budget reconciliation process, which is “filibuster-proof,” requiring the approval of a simple majority of members of Congress.

“There are infinite and complex ways for Congress to cut safety net programs without calling them cuts,” Bonnyman said. “Any significant cuts will hurt people.”

Some programs already have been cut.

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How do Medicaid Home Care Programs Support Family Caregivers?

By Alice Burns, Abby Wolk, Molly O'Malley Watts, and Maiss Mohamed, KFF, January 13, 225

KFF estimates that 4.5 million people use Medicaid home care, which provides medical and supportive services to help people with the activities of daily living (such as eating and bathing) and the instrumental activities of daily living (such as preparing meals and managing medications). Medicare generally does not cover home care (also known as home- and community-based services or HCBS), and Medicaid paid for two-thirds of home care spending in the United States in 2022. In Medicaid home care, many people “self-direct” their services, giving them greater autonomy over the types of services provided and who they are provided by; and in some cases, allowing payments to family caregivers. Beyond paying for their caregiving, Medicaid supports family caregivers with services such as training, support groups, and respite care (which is paid care that allows family caregivers to take a break from their normal responsibilities). According to a document made public by Politico, House Republicans are considering reducing Medicaid spending by $2.3 trillion over 10 years, which represents a nearly one-third reduction in Medicaid spending. Cuts of that magnitude would limit states’ ability to continue supporting family caregivers.

This issue brief describes the availability of self-directed services and supports for family caregivers in Medicaid home care. (It is unknown how many people are receiving paid care from family and friends, or how many family caregivers are receiving supports from Medicaid.) The data come from the 22^nd KFF survey of officials administering Medicaid home care programs in all 50 states and the District of Columbia, which states completed between April and October 2024. The survey was sent to each state official responsible for overseeing home care benefits (including home health, personal care, and waiver services for specific populations such as people with physical disabilities).

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Note: We sent this article out earlier this week. It's so good we're including it again in case any of our readers missed it.

Ignored Voices - Harris Capps: Ohio disability discrimination is being met with silence from Gov. DeWine

By Harris Capps, The Cleveland Plain Dealer, January 12, 2025

(Harris Capps is a past President of VOR)

Imagine the difficulty of being a parent to a child with severe-to-profound intellectual and developmental disabilities, fighting to protect your child’s well-being while struggling against a federally funded agency meant to prevent discrimination but, instead, perpetuating it. That unaccountable agency is Disability Rights Ohio.

In November 2022, hope surged as parents, guardians, and service providers packed the Statehouse to request accountability from Disability Rights Ohio (DRO). Yet today, the recommendations to Gov. Mike DeWine from the special legislative Joint Committee to Examine the Activities of the State’s Protection and Advocacy System and Client Assistance Program which held that hearing remain shelved, with families still waiting for action. On Monday, Jan. 6, the state ushered in a new legislative session with another opportunity to address these recommendations.

Federal law requires states to have a Protection & Advocacy (P&A) organization, designated by the state’s governor. Ohio’s P&A is DRO, with over 49 employees and funded ($5 million) by the federal Administration for Community Living (ACL), part of the U.S. Department of Health and Human Services.

Continued

Tennessee - 'There are no beds': Judge blasts lack of available treatment for people incompetent to stand trial

By Ben Hall, News Channel 4 Nashville, January 15, 2025

A disaster.

That's what a Davidson County judge calls the lack of treatment beds in Tennessee for people deemed incompetent to stand trial because of an intellectual disability. If a person is arrested but a doctor determines that the person does not understand the charges against them, then that individual cannot stand trial.

The legislature passed Jillian's Law last year, which required treatment for people found not competent to stand trial instead of releasing them back to the streets.

Before Jillian's Law passed, there were only four beds in the entire state for people with intellectual disabilities who were charged with a crime. The law provided funding for two more.

But the Tennessee Department of Disability and Aging told NewsChannel 5 Investigates it can only find staffing for one of those two additional beds. So, Tennessee only has five beds in the entire state.

A department spokesperson said they "are actively working to hire contracted staff to reach full capacity of six."

The only facility for those committed due to an intellectual disability is the Harold Jordan Center in Nashville and currently all five of its beds are full, according to the Department of Disability and Aging. Intellectual disabilities often involve a brain injury, which is difficult to treat to a level that restores competency.

People arrested with mental health issues can often become "competent" after receiving medication or treatment. However, some will never reach that threshold.

Davidson County Judge Melissa Blackburn is especially concerned for those arrested with intellectual disabilities.

"There are no beds that you can place an individual in that has an intellectual disability. There are no beds," Judge Blackburn said.

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Kentucky - 'We will find a way. He's ours.' Family fighting to keep son with severe autism in KY

By Brooke Hasch, WHAS 11 News, January 16, 2025

The Moldoveanu family made several life changes and accommodations for Frankie through the years, but his needs changed as he got older.

Rachel Moldoveanu's son, Frankie, hasn't been home since the first of December. It wasn't his choice, and it certainly wasn't what she wanted, either. But Rachel said life at home was no longer an option for her 15-year-old son with profound, or severe, autism.

Frankie Moldoveanu was diagnosed as a toddler and has received a variety of assistance over the years through the Michelle P. Waiver, a program through Kentucky Medicaid. It provides help to people with intellectual or developmental disabilities so they can live in their community as independently as possible. Frankie is also non-verbal.

"Frankie was one of the youngest kids at the time to ever receive the waiver," his mom said. "And the waiver was helpful for many years, because it stepped in and it paid for what our insurance didn't pay for, and those services out of pocket are extremely expensive."

As Frankie got older, his needs changed.

"What you need at 4 years old is very different than what you need when you're 14," Rachel said. "When he got older, he would elope, he would get out of house, and they would find him three houses down, and sometimes he'd be clothed and sometimes he wouldn't. You could just turn your back for a second. I could be folding clothes in a separate room, and he could slip out the door."

Rachel gave up her career as a nurse eight years ago to be with Frankie full-time. Her husband's a physician at UofL Health.\

"Frank was always a very happy, happy boy, until he wasn't," she said. 

Frankie started to develop aggressive behaviors two years ago. Combine that with his 'linebacker' build of almost six feet and 230 pounds, and Rachel said he was becoming a danger to himself and others at times. With two young girls at home, she couldn't risk it anymore.

Frankie sent his grandmother to the hospital with a bite injury so severe, she needed surgery last fall. He then attacked his dad while driving.

"He would either go after you, or he would bite you, or break a window or pull the cabinet door off. And I don't want people to think that he is some kind of monster, because he's not. He's an amazing, wonderful child. He's my son. We love him so much," Rachel said. "But it is a very hard thing to realize that when you're driving down the road and your son bites you and attacks you and you almost have an accident, at some point, you realize that you can't continue to live like you're living."

Read the full article here

Audit reveals gaps in oversight of Louisiana’s abuse and neglect database

By Nolan McKendry, The Center Square via AOL, January 13, 2025

The Louisiana Department of Health has significant shortcomings in overseeing its adverse actions lists for certified nurse aides and direct service workers, according to a new report from the Louisiana Legislative Auditor's Office. 

These lists are meant to identify health care workers who have findings of abuse or neglect against them, which should prevent them from working in settings where they could harm vulnerable individuals.

At one nursing facility, 11.1% of all certified nurse aides were found to have been employed despite being on the adverse action list. Of 380 direct service workers who worked for intermediate care facilities for individuals with developmental disabilities, 4.2% continued to be employed after being added to the list.

Between 2019 and 2023, the state health department recorded findings for 80 certified nurse aides and 431 direct service workers on the adverse actions lists.

The report notes that the data from the Louisiana Workforce Commission includes only wage information and does not specify job roles or responsibilities. As a result, it is unclear whether certified nurse aides and direct service workers listed on the adverse actions lists and later employed in prohibited health care settings were involved in direct care or worked in other roles, such as administrative, janitorial or food service positions.

A primary concern is the lengthy process for evidence reviews. On average, it took the state health department 390 days for certified nurse aides and 375 days for direct service workers to add findings to the adverse actions lists after facilities reported allegations. 

During this time, these workers were allowed to continue their employment. "LDH does not have adequate staff to conduct reviews timely," the auditor said.

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Mississippi - Holding unlicensed personal care homes accountable, Disability Rights Mississippi calls for new legislation

By Christopher Fields, WLBT 2 News, January 16, 2025

Disability Rights Mississippi is calling for a bill to be passed to crack down on unlawful practices that take advantage of vulnerable people regarding housing.

The group says for far too long, those with disabilities have not been protected under a law when it comes to housing.

Through their investigation, they have gathered evidence of neglect, abuse, and manipulation.

“The longer this is unmitigated, the more vulnerable citizens will suffer and have their safety and well-being threatened,” said Polly Tribble, the Disability Rights Mississippi Director.

Members of Disability Rights Mississippi stood in solidarity on the steps of the State Capitol Thursday voicing their concerns as well as demands.

“We are hopeful that our leaders will take the findings in this report seriously and act with the urgency we believe that this issue requires,” said Tribble.

The agency is funded by the state to provide legal and advocacy services for people with disabilities across the state.

They say over the past decade, DMRS has conducted extensive investigations into unlicensed personal care homes. Those investigations uncovered a crisis of widespread misconduct, unsafe living conditions, and discriminatory practices.

“The conditions outside of the home are often deplorable. The inside is only worse. Inoperable plumbing, improper cooling, and heating. Windows nailed shut and covered with plastic instead of a window,” said Raven LeSure with Disability Rights Mississippi.

The group also provided photos from their findings of homes in harsh conditions.

Some clients were even living in sheds and tents.

Those on hand tell us people with severe mental illness, veterans, and those without family are staying in these facilities.

“It’s a life-or-death issue. We have seen people who have had to go to hospitals because they haven’t been taken care of. So, it’s a big deal. It’s a big deal to us because we want people to be treated with dignity and we want people to be treated humanely,” said Tribble.

Now the organization is demanding that lawmakers establish meaningful penalties for those operating unlawful, unlicensed facilities. 

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Virginia - Judge ends 12-year intensive monitoring of Virginia’s intellectual disability programs

By Brad Kutner, Radio IQ (WVTF), January 16, 2025

Over a decade ago Virginia closed most of its state-run training centers used to house the intellectually and developmentally disabled. The institutionalized treatment provided in them led to a Department of Justice monitoring program that ended this week.

“It’s important to integrate every member of our society, and we will continue, and we need to do more, but we’ve made significant progress,” Senator Barbara Favola told Radio IQ, reacting to the announcement that Virginia had completed its 12-year-long monitoring program with the Department of Justice.

Aimed at creating better conditions for the Commonwealth's most needy, and after spending hundreds of millions of dollars, a federal Judge in Richmond issued a permanent injunction Wednesday. The move reduces federal supervision but requires new reimbursement rates and quality of care and housing option benchmarks.

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What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?

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, there have been over 600 bills introduced in the 119th Congress.

Currently, there have been no bills introduced in the 119th Congress that affect the lives of people with I/DD or autism.

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

VOR SUPPORTS:

VOR OPPOSES:

VOR supports increasing funding for people with I/DD, but we have concerns with bills would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities or employment programs that are most appropriate to their needs.