January 24, 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 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.

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

Platinum - $ 2,500

Gold - $1,000

Silver - $ 500

Bronze - $ 250

Advocacy Hero - $ 100

Friends & Families - (Other amounts)

Any and all gifts are welcome

More on Potential Medicaid Cuts

Over the past several weeks, we have featured a host of articles on looming cuts to Medicaid. For good reason: Medicaid is the foundation of all services that our family members with I/DD and autism receive.

We are not trying to politicize this issue. We are trying to inform our members, in hopes that you will reach out to your members of the House and Senate, your Governor, your State DD Services Administrator, and anyone you can think of who might be helpful in protecting the services on which our loved ones and their families depend.

We offer more informative articles below:

Medicaid: What to Watch in 2025

By Robin Rudowitz, Alice Burns, Elizabeth Hinto, and Jennifer Tolbert, KFF, January 23, 2025

At the start of 2025, many issues are at play that could affect Medicaid coverage, financing, and access to care. Medicaid is the primary program providing comprehensive health and long-term care to one in five low-income Americans. While Medicaid was not discussed much on the campaign trail, there are expectations that big changes will likely be proposed through executive actions by the Trump administration and as part of a tax and spending debate in Congress. Even without Congressional action, the Trump administration can make significant programmatic changes through administrative action (including state demonstration waivers, regulations, and other guidance). Other areas to watch with Medicaid implications include state budgets and long-term care workforce challenges.

The most significant changes to Medicaid in 2025 could include federal funding cuts and financing reforms. According to documents reported on by Politico, House Republicans are considering $2.3 trillion in Medicaid cuts from policy changes that include: imposing a per capita cap on federal Medicaid spending, reducing the federal government’s share of costs for the Affordable Care Act (ACA) expansion group, imposing Medicaid work requirements, reducing the minimum federal matching rate for Medicaid expenditures, changing the match rate for the District of Columbia, and repealing the incentive for states to newly adopt the Medicaid expansion that was passed in the American Rescue Plan Act. These policy changes would fundamentally alter how Medicaid financing works and federal spending reductions of this magnitude would put states at significant financial risk, likely forcing them to cut the number of people covered, cover fewer benefits, and cut payment rates for physicians, hospitals, and nursing homes. If the House and Senate pass a budget resolution with a $2.3 trillion target for Medicaid, Congress will need to come up with detailed legislative policy proposals to hit that target through the budget reconciliation process.

Under current law states are guaranteed federal matching dollars without a cap for qualified services provided to eligible enrollees. The match rate (the share that the federal government pays, known as the federal medical assistance percentage or “FMAP”) varies across states based on per capita income. States receive a higher match rate for some services and populations, most notably, the 90% enhanced match for the ACA expansion population, and sometimes, Congress adjusts the match rate upwards during economic downturns.

The previous Trump administration’s Section 1115 waiver policy emphasized eligibility restrictions and capped financing. Eligibility restrictions included permitting states to charge premiums and lock out enrollees who are disenrolled for unpaid premiums. Waiver priorities shift across presidential administrations and the new Trump administration’s waiver priorities will likely differ significantly from those of the Biden administration; however, it is unclear how the Trump administration will treat certain waivers promoted and approved by the Biden administration, such as those focused on addressing health-related social needs, multi-year continuous eligibility primarily for children, and leveraging Medicaid to help individuals leaving incarceration transition to the community. The Trump administration could choose not to approve waivers that remain pending, rescind existing waiver guidance, and withdraw approved waivers, although some of these waivers, particularly those that are using Medicaid to assist with reentry from incarceration, have been pursued by both Republican and Democratic governors.

Read the full article here

Cutting Federal Medicaid Payments to States: Bad News for Their Credit Ratings

By Andy Schneider, Georgetown University - McCourt School of Public Policy, January 22, 2025

Medicaid is the nation’s largest health insurer, covering over 70 million Americans. And, as a new CCF report documents, it is a particularly important source of coverage for children and adults in rural areas and small towns. Republicans in the House are reportedly discussing cutting federal Medicaid spending by up to $2.3 trillion (with a “t”) or more. These federal “savings” would be achieved not by reducing health care inflation but by cutting federal Medicaid payments to states. This will force states to dramatically raise taxes, cut other parts of their budget like K-12 education to make up the shortfall and, as is most likely, make deep and damaging cuts in eligibility, benefits, and/or payments to providers and plans. Those cuts, in turn, will lead to millions of people having their Medicaid benefits reduced or losing their Medicaid coverage altogether. The resulting increase in the number of uninsured Americans — there’s been no reported discussion of “replace” — will disrupt a critical source of revenue for many hospitals, clinics, nursing facilities, and other providers, especially in those rural and urban communities where Medicaid is a dominant payor. 

That much is obvious. Or at least it should be. What is less well understood is that large cuts in federal Medicaid payments to states may also affect state credit ratings. States commonly borrow funds in order to finance capital spending like roads and schools and other infrastructure, usually by issuing general obligation bonds. Investors who purchase the bonds generally demand an interest rate that is consistent with the risk that the state will not be able to honor its financial obligations and they will not be repaid when the bond matures. They look to credit rating agencies to assess that risk. The greater the risk of nonpayment, the lower a state’s credit rating, and the higher the interest the state must pay in order to borrow the funds it needs for investment. In some states, a strong credit rating is a particular point of pride for policymakers.

So, what does Medicaid have to do with state credit scores? As it happens, quite a bit. The National Association of State Budget Officers estimates that total spending by all states in state fiscal year 2024 will be $3.064 trillion (with a “t”). Federal funds will be the source of one third of that amount— $1.047 trillion. (The other sources are state general funds, other state funds, and bonds). Of that $1.047 trillion, federal Medicaid funds are estimated to account for over half—$588 billion, or 56.1 percent—which is by far the largest source of federal funding for states budgets. In short, federal Medicaid funds alone represent a little under one fifth of states’ total spending. A significant cut in federal Medicaid funds will matter.

There are lots of questions that state and local officials, as well as constituents, should be asking their Congressional delegations about how their state or locality can be expected to deal with hundreds of billions (if not trillions) of dollars in cuts in federal Medicaid spending over the next ten years. As noted above, these cuts are simply a cost shift from the federal government to states and localities, which we know will put children and families at risk for loss of health insurance coverage and increased medical debt. What we don’t know is how much of a cost shift a particular state or locality can absorb without seeing its credit rating fall? If the cost shift is too large, what actions, if any, can the state or locality take to avoid having its credit rating decline? And what are the implications of impaired credit ratings for state and local infrastructure and economic growth?

Read the full article here

GOP lawmakers coy on Medicaid cuts for tax extension

By Peter Sullivan, Axios, January 22, 2025

Republicans from swing states and districts are ducking questions about their openness to cutting Medicaid in order to help pay for an extension of President Trump's tax cuts.

Why it matters: Republican leadership can lose only a handful of votes, making cuts to the safety net program a high-stakes loyalty test that could deliver an early legislative win but result in millions of people losing their health coverage.

• "We're far away from going through all the payfors," said Rep. Mike Lawler (R-N.Y.), who hails from a suburban district north of New York City and could run for governor. "I'm not negotiating in the press on this."

• "I have to look at it," Sen. Thom Tillis (R-N.C.), one of Senate Democrats' top targets in 2026, told Axios, noting that he had heard of some discussion of "block granting." "I'm very familiar with North Carolina's waivers and Medicaid program, so as long as I feel like it doesn't come into conflict with the legislative priorities for Medicaid in the state, I'd be open to it," he added. Pressed on whether there is a concern about people losing coverage, Tillis responded: "Well, that's the question. I have to be convinced that it comports with our strategy in North Carolina."

• Sen. Lisa Murkowski (R-Alaska), a key moderate vote who is not up for reelection, expressed the most concern about cuts. "I come from a state where Medicaid expansion has been really, really very key, so if it's going to be part of reconciliation, [it's something] I would be looking very critically at," she said.

• Sen. Shelley Moore Capito (R-W. Va.), was among the most vocal Republicans who expressed concerns about Medicaid cuts being too steep during the 2017 repeal effort. "There's big drivers [of debt], Medicaid's one of them," Capito told Axios last week. "I would have to see specifically what they would be cutting."

Read the full article here

Trump’s Return Sparks Worry About Cuts To Medicaid, Disability Services

By Michelle Diament, Disability Scoop, January 21, 2025

Disability advocates are preparing to fend off potentially seismic cuts to Medicaid and community-based services now that President Donald Trump is back at the White House and Republicans are in control on Capitol Hill.

Republicans in the U.S. House of Representatives are reportedly circulating a “menu” of possible options to slash more than $5 trillion in spending in order to fund tax cuts and other Trump priorities. Options outlined in a document obtained by Politico show that up to $2.3 trillion could come from Medicaid.

If such cuts were to become reality, that would represent nearly a third of projected Medicaid spending over 10 years, according to KFF, a nonprofit that conducts health policy research.

That’s raising major concerns for disability advocates who have been pushing for years to see greater investment in Medicaid home and community-based services, the nation’s primary system of supports for people with developmental disabilities.

“It would be hard to overstate how serious these threats are,” said Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. “Medicaid is a lifeline program for our community — we need to make it clear that it should be expanded, not looted to pay for tax cuts for billionaires.”

Advocates have been warning for years that the Medicaid home and community-based services system is under extreme pressure. A recent survey of hundreds of disability service providers nationwide found that 69% turned away new clients and 39% closed programs or services in the previous year and over a third said they were considering additional program cuts.

Among the options that Republicans are reportedly weighing is shifting Medicaid to a “per-capita cap system.” Currently, the federal government provides matching grants to states to help pay for the cost of care for anyone eligible for Medicaid, no matter how expensive. But, under a per-capita cap system, the government would provide a set amount of money for each enrollee leaving states to make up any difference in cost.

The draft document also lists lowering the matching funds that the federal government provides states for Medicaid, implementing work requirements for the program and other options to squeeze savings.

“We have concerns that when federal Medicaid funding is reduced, states must find new funding to balance the shortfall in state budgets. If new funding cannot be found, optional services like community-based services for people with IDD are often reduced, leading to longer wait lists for (home and community-based services) and higher rates of unnecessary and expensive institutionalization,” said Elise Aguilar, senior director of federal relations at the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation.

All of this has advocates experiencing déjà vu from Trump’s first term as president when Republicans in Congress tried to switch Medicaid to a per-capita cap system.

“Some of the proposals that we are hearing about are eerily similar to what was proposed in 2017, like fundamentally changing the structure of Medicaid,” said Nicole Jorwic, chief of advocacy and campaigns at Caring Across Generations, an organization advocating for caregivers and people who rely on them. “This would put access to home (and) community-based services at extreme risk, increase waiting lists and further exacerbate the direct care workforce crisis.”

A broad coalition of over 200 groups representing people with disabilities, family caregivers, seniors and care workers came together this month in a letter to leaders of the House and Senate to push back against any cuts to Medicaid.

“We are deeply concerned about recent statements from some Congressional leadership supporting proposals that would deeply cut Medicaid funding. Medicaid is already lean and efficient,” reads the correspondence organized by The Disability and Aging Collaborative and the Consortium for Constituents with Disabilities. “We strongly oppose per-capita caps, block grants, work requirements, restrictions on eligibility, barriers to enrollment and any other cuts or harmful changes to the Medicaid program. The result is the same: taking away coverage from people with disabilities, older adults, and others who cannot otherwise afford health care and long-term services and supports.”

Continued

Federal and State Share of Medicaid Spending - Interactive Map from KFF

Click on the map to see the percent and amount of Medicaid spending in your state

Link to map and table here

Ed Department Report Reveals Sharp Inequities For Students With IEPs, 504 Plans

By Shaun Heasley, Disability Scoop, January 21, 2025

New data from thousands of school districts across the nation is highlighting stark differences in the experiences of students with disabilities compared to their typically developing peers.

Children with disabilities are far more likely to be subject to restraint or seclusion, suspended, expelled, referred to law enforcement or arrested at school, according to the U.S. Department of Education’s most recent civil rights data collection.

The findings, released this month, are based on responses from 17,704 school districts accounting for more than 98,000 schools during the 2021–2022 academic year.''

The federal agency found that children served under the Individuals with Disabilities Education Act account for 14% of the nation’s 50 million public school students while another 3% are covered by Section 504 of the Rehabilitation Act.

Nonetheless, 29% of students who received one or more out-of-school suspensions and 24% of those who were expelled had disabilities, according to the report. The trend extended to even the youngest learners with the Education Department finding that 41% of preschool students who were suspended and 74% of young children who were expelled were served under IDEA.

Similarly, K-12 students with individualized education programs, or IEPs, accounted for a quarter of those referred to law enforcement or arrested at school.

Read the full article here

National Core Indicators Intellectual & Developmental Disabilities: State of the Workforce 2023 REPORT RELEASE

By The Human Services Research Institute and The National Association of State Directors of Developmental Disabilities Services, January 23, 2025  

Human Services Research Institute (HSRI) and The National Association of State Directors of Developmental Disabilities Services (NASDDDS) announce the release of the final National Core Indicators State of the Workforce for Intellectual and Developmental Disabilities (NCI-IDD SoTW)^® 2023 report. The NCI-IDD SoTW is the most comprehensive data on IDD provider agencies and the Direct Support Professional (DSP) workforce across the nation and is a pivotal tool in combatting the workforce crisis.

For the 2023 survey year, 3,934 provider agencies responded, representing 325,501 DSPs in 26 states and the District of Columbia. The data for 2023 suggest some positive trends for the state of the IDD DSP workforce.

For example:

• Across the nation, the median hourly wage for DSPs was $17.20 which is almost a dollar-and-a-quarter increase from the median hourly wage of $15.98 in 2022.
• The weighted average turnover ratio was 39.7% and of those 24 states that also conducted the NCI-IDD State of the Workforce in 2022 survey, 17 states demonstrated a decrease in turnover ratio.
• On average, 38.1% of agencies report they turned away or stopped accepting referrals due to staffing issues, down from 49.7% in 2022.

The release of the 2023 State of the Workforce Survey data marks an opportunity for state developmental disabilities agencies, advocates, policy makers, and researchers to continue to work together to determine the best strategies to address the DSP workforce crisis and improve supports.

For 2023 NCI State of the Workforce Survey^® Data-At-A-Glance:

https://idd.nationalcoreindicators.org/wp-content/uploads/2025/01/SotW-2023-At-a-Glance-3.pdf

Read the full article here

Safety Net Hospitals: Key Elements of a Successful Advocacy Strategy

From Manatt Health, January 21, 2025

A good synopsis on the critical role of Safety Net Hospitals. These hospitals provide essential services, and are most likely to be at dangerously overburdened if the federal government cuts Medicaid.

Read the article here

COFAR opposes Healey’s decision to close two state-run hospitals

By Dave Kassel, The COFAR Blog, January 24, 2025

COFAR is joining state employee unions in opposing a decision by the Healey administration to close two state-run hospitals — one for persons under 22 with developmental disabilities and the other for individuals with mental illness.

The 60-bed Pappas Rehabilitation Hospital in Canton offers medical, rehabilitative, educational and recreational services for persons with developmental disabilities up to the age of 22, according to the Massachusetts Nurses Association (MNA). The administration plans to move the hospital’s programs to the state-run Western Massachusetts Hospital in Westfield.

The Pocasset Mental Health Center is a 16-bed facility that serves persons with mental illness.

“The Healey administration does not realize the importance of preserving state-owned and operated facilities that offer a comprehensive set of services to some of our most vulnerable residents,” said Thomas J. Frain, COFAR’s president. “These are unique assets whose closure may provide some short-term savings. But there will be a long-term detrimental impact to the state and taxpayers if these assets are eliminated.”

COFAR has long expressed concern that the administration has a policy of allowing the Wrentham Developmental Center and the Hogan Regional Center — its two remaining state-run congregate care centers for adults with intellectual and developmental disabilities – to close by attrition.

The Pappas Hospital in Canton hospital offers 24/7 nursing care, therapeutic services including speech and language therapies, and operates full-time classrooms. The hospital offers a wide range of recreational programs, including a therapeutic horseback riding program.

Continued

New report outlines how potential cuts to Medicaid could impact Minnesotans

By Dene K Dryden, Duluth News Tribune, January 18, 2025

A new report out of Georgetown University details Medicaid's role in rural communities and their health systems — and how proposed funding cuts at the national level could impact Minnesotans.

"(Medicaid) is absolutely essential to providing access to health care services in Greater Minnesota and in most parts of the Dakotas," said Katy Kozhimannil, co-director of the University of Minnesota's Rural Health Research Center and Rural Health Program. "Medicaid is an absolutely essential source of revenue for those hospitals to keep operating."

Medicaid — the state-federal program known as Medical Assistance in Minnesota — supplies health insurance coverage to low-income Americans. Another program, the Children's Health Insurance Program, provides health coverage for children and, in some states, pregnant women who do not meet the financial requirements for Medicaid. Almost 80 million people in the U.S. receive health coverage through Medicaid/CHIP.

"Medicaid is the backbone of many aspects of our health care system, including paying for the majority of nursing home residents," said Joan Alker, lead author of the report from Georgetown University's Center for Children and Families. She is also the center's executive director. "Covering 40% to 50% of children at birth, nationwide ... covering people with disabilities and many other low-income people."

In Minnesota, 18% of the state's population, more than 1 million people, is covered by Medicaid/Medical Assistance or CHIP. Rural Minnesota counties have a larger percentage of Medicaid enrollees (21.5%) than metro counties (18.1%), per the report.

The report comes as U.S. House Republicans consider cutting more than $5 trillion (over 10 years) in spending on health, environment and social safety net policies. The greatest bulk of those proposed cuts — an estimated $2.3 trillion — would come from Medicaid.

"That equates to almost one-third of federal Medicaid spending," Alker said.

In 2022, Medicaid spending in Minnesota totaled $16.3 billion, according to the Kaiser Family Foundation. The federal government takes on 50.8% of the state's Medicaid costs, said Anne Dwyer, associate research professor with the Center for Children and Families.

"So for about every dollar that is spent on medical care in Medicaid in Minnesota, the federal government is picking up over half," said Dwyer, who noted that federal funds cover 90% of the cost for people covered under expanded Medicaid.

Because federal dollars make up a big chunk of how Medicaid is paid for, Dwyer said large cuts would dramatically impact state Medicaid programs, including Minnesota's.

"States will have no choice but to dramatically raise taxes, cut other parts of their states' budgets including K-12 education and/or institute large and harmful cuts to their Medicaid programs such as cuts to benefits, eligibility and payment rates for providers and plans," Dwyer said.

Continued

Big cuts to Medicaid could be particularly hard on South Carolina children and mothers

By Tom Corwin, The Post and Courier, January 19, 2025

Congressional leaders are eying drastic cuts to Medicaid that could have a damaging impact on rural areas, including in South Carolina, where more mothers and children depend on the program, advocates say. Adding a work requirement for S.C. Medicaid patients, as Gov. Henry McMaster would like to do, would impact those same families even more, one national expert said.

An analysis from the Georgetown University Center for Children and Families looked at the breakdown of Medicaid patients between urban and rural counties, with rural counties defined as those which did not have a city with at least 50,000 people.

The analysis was prompted by leaked plans from Republican congressional leaders eying drastic cuts to the program of up to $2.3 trillion — or a third of the whole Medicaid budget, said Joan Alker, the center's executive director and lead author of the report.

"Rural communities are at grave risk if substantial federal cuts are enacted," she said, noting people in those areas already suffer higher rates of chronic disease and a lack of health care resources.

Nationally, Medicaid covers 80 million people and is a major source of health coverage for children, Alker said. In South Carolina, it covers 51.1 percent of children in rural areas — much higher than the national average of 40.6 percent. The Palmetto State is one of six states where more than half of rural children depend on it for care, the report found.

Among adults under age 65, South Carolina also is among the 10 worst states for disparities between rural adults who depend on Medicaid for care versus those in urban areas, where 17.5 percent have Medicaid coverage.

McMaster has already signaled he would like able-bodied adults to have to work to keep those benefits, putting in 80 hours a month through a job site, school, training or community service. He plans to submit an application for a waiver to implement those policies "on the first day of President Donald Trump’s administration," according to his executive budget report for next fiscal year.

Because South Carolina is one of 10 states that chose not to expand Medicaid, it is difficult for adults who are not parents to qualify for the program, "so the adults in your program are primarily parents, very low income, disproportionately women," Alker said.

S.C. Medicaid covers 60 percent of the births in the state, and much of the coverage then extends from that. 

"While I think we all have an interest in supporting work, this policy is a mistake," Alker said. "It's misguided."

Beyond maternity care, Medicaid is a major supporter of other rural health care, said Katy Backes Kozhimannil, co-director of the Rural Health Research Center at the University of Minnesota School of Public Health. It helps to provide access to services ranging from adolescent mental health to substance abuse treatment to long-term care for the elderly, she said.

"While the influence of Medicaid policy on access to and outcomes of care may begin at birth, or even before, the effects of changes in Medicaid are felt across the life-course for rural residents," Kozhimannil said.

Read the full article here

Maryland - Disabilities community ‘distressed,’ ‘scared’ by proposed $200 million cut to state services

By Danielle J. Brown, Maryland Matters, January 20, 2025

Advocates are reeling at recent proposals to cut $200 million from a state agency that administers resources for people with developmental disabilities — cuts that advocates call inhumane and harmful for the people who need those services.

“We are deeply distressed by the nature of a number of these proposals,” said Laura Howell, CEO of the Maryland Association of Community Services, who said the plans “are absolutely going to hurt people.”

The fiscal 2026 budget unveiled last week by Gov. Wes Moore (D) calls for a $200 million cut from the Developmental Disabilities Administration, one of the tough choices Moore said state officials and lawmakers face as they grapple with a $3 billion budget shortfall.

“We will be advocating strenuously in the General Assembly to try to find a way to reverse some of this, if not all of it,” Howell said. “I think it’s going to be a really tall order, given the size of the cut.”

Continued

Follow-up article:

Advocates ask to be ‘at the table’ amid talks of budget cuts to disability agency

By Danielle J. Brown, Maryland Matters, January 24, 2025

Members of the disability community told a Senate panel Thursday that they feel they’re being left out of the conversations surrounding potentially huge budget cuts to the state agency responsible for administering resources for their community.

“The community is here to work with the department — we’re here to be a voice. But I don’t know that we feel that we’ve been heard,” said Mat Rice, executive director for People on the Go of Maryland, in testimony before Senate Budget and Taxation Committee.

“We ask you to please consider the full impact of these cost-containment measures and not to turn back the clock on a marginalized community that has made significant civil rights progress,” he said.

The cost-containment measure he was referring to is a proposed $200 million cut to the budget for the Developmental Disabilities Administration, one of the largest hits in a fiscal 2026 budget that has to close a projected $3 billion spending gap.

About 20,500 Marylanders with developmental disabilities got state support last year to help their families afford services, usually through a Medicaid waiver that also brings in federal dollars.

The waivers provide two avenues for services — a community model where people join an established organization for disability care or a self-directed model where the waiver recipient or their family hires individual employees for services.

The proposed cuts hit several programs and resources currently provided through the DDA, according to documents from the Department of Health. Many of those proposed cuts would restrict current rate increases for certain providers or programs, such as a geograpic rate differential for work in certain counties in central Maryland, and one-on-one care for high-needs patients.

Health Secretary Laura Herrera Scott told the Senate committee Thursday that there are regular stakeholder meetings where members of the public can voice their concerns to the department. But advocates and members of the developmental disability community said they do not feel that their voices and concerns are not being prioritized by the department as the legislature works on next year’s budget.

The advocates worry that service providers, whether they are in a community model or self-directed care, will be asked to perform the same services for less pay, which could lead to personnel leaving the field to find better paying positions.

“Volatility is bad for people with developmental disabilities, and these proposals absolutely create volatility in our world,” said Laura Howell, CEO of Maryland Association of Community Services, in her testimony.

Read the full article here

Indiana - Proposed Medicaid Cuts Threaten Access to Critical Autism Care: Families and Advocates Call for Immediate Action              

From Bierman Autism Centers and the Council of Autism Service Providers, January 21, 2025

Families of children with autism in Indiana face alarming challenges as Medicaid introduces three drastic changes to Applied Behavior Analysis (ABA) therapy coverage. Without input from families or providers, Medicaid announced:

1. A 30-hour weekly limit on ABA therapy per child.
2. A three-year lifetime cap on ABA services per child.
3. Mandatory credentialing for all Registered Behavior Technicians (RBTs).

Impact on Indiana's Children with Autism

The changes will disproportionately impact the most vulnerable children in Indiana. Decades of clinical research support intensive treatment—30+ hours per week over multiple years—as essential for children with the most significant needs. "These caps will harm the children who need care the most," Roche emphasized. Medicaid's approach prioritizes cost-cutting over the well-being of vulnerable children. In addition, lawmakers agreed long ago that insurance, including Medicaid, cannot arbitrarily cap mental health services in the interest of saving money. This new policy puts Indiana Medicaid in violation of federal Mental Health Parity laws.

Medicaid is required, per their own regulations, to provide medically necessary treatment, including the necessary dosage, and should not be allowed to implement these caps," Roche added.

Some of these new requirements for authorization of services include additional assessments and paperwork that are inconsistent with standard clinical practices for medical treatment. For example, the new guidelines require an assessment called the Behavior Assessment System for Children, Parenting Relationship Questionnaire (BASC-PRQ). This assessment cannot be used with children under 2 years old. However, providers are already seeing treatment requests being fully denied if the BASC-PRQ is not administered for a child under age two. These denials of services have begun even before the proposed new rules go into effect.

Bierman is already working with one family that received a full denial because of the assessment requirements. This further highlights that these new regulations were not created with proper input from clinical experts, and that Medicaid is using these arbitrary rules to deny medically necessary treatment to children.

Continued

Deaths spark fight for stricter group home protections in Texas

By Tanya Eiserer, WFAA News, January 23, 2025

The deaths of two North Texas men with intellectual disabilities revealed through WFAA's Disabled in Danger investigation have reignited calls for reform. State Rep. Chris Turner has reintroduced legislation aimed at addressing the loopholes exposed in the wake of their deaths. 

Joshua Moore, who had the intellect of a third grader, was living in a state-funded group home when tragedy struck. In 2021, his caretaker admitted to police that he shot and killed Joshua after leaving a knife out, which he said Joshua grabbed. 

“There simply shouldn’t be firearms around that that are accessible,” Turner said. 

A WFAA investigation uncovered that Texas does not ban firearms in group homes. In response, Turner has refiled “Joshua’s Act,” a bill that would prohibit guns in group homes caring for people with intellectual disabilities. 

“This would simply extend the same common-sense protections that we currently have in nursing homes, that we currently have in hospitals, to also include group homes,” Turner said. 

Joshua’s father, Don Moore, supports the legislation. 

“It’s needed for safety and protection and has nothing to do with the Second Amendment,” he said. 

However, the bill faces an uphill battle in a legislature where restrictive gun bills have become an anathema. In the last legislative session, it failed to advance out of committee. 

“I’m hopeful that we can earn some bipartisan support on this bill because it’s a common-sense bill,” Turner said. 

Turner is also renewing efforts on another piece of legislation stemming from WFAA's 2019 investigation into the death of Leroy Anderson, another intellectually disabled man. The investigation revealed that the owner of Anderson’s group home, not his family, was poised to collect his $50,000 life insurance payout. 

“It is the definition of a conflict of interest and a conflict of interest impacting some of the most vulnerable people in our society, and so that’s a loophole that needs to be closed yesterday,” Turner said. 

Continued

Nebraska’s Caregiver Tax Credit Act now in effect

By 10/11 NOW, KSNB News 4, January 21, 2025

A law establishing tax credits for individuals and organizations supporting those with intellectual and developmental disabilities (IDD) is now in effect.

In April 2024, Governor Jim Pillen signed LB 937 into law. These tax credits benefit direct support professionals (DSPs), their employers, and employers of individuals receiving services through the Individuals with Intellectual and Developmental Disabilities Support Act.

Nebraska Revised Statutes §§ 77-3154 to 77-3162 outline eligibility for the credits:

• Employers of DSPs may claim a $500 credit per DSP employed for at least six months and 500 hours during the taxable year.
• Direct support professionals are eligible for a $500 credit if they meet the same criteria.
• Employers of individuals receiving Medicaid Home and Community-Based Services (HCBS) may claim a $1,000 credit per employee who receives HCBS services, has been employed for at least six months, and worked a minimum of 200 hours during the taxable year. This provision promotes employment opportunities for individuals with IDD, supporting their ability to lead lives grounded in the dignity of work.

“These tax credits are essential for supporting individuals with intellectual and developmental disabilities and the people and organizations that assist them,” said Tony Green, Director of the Division of Developmental Disabilities within the Department of Health and Human Services. “They recognize the vital contributions of DSPs, service providers, and employers in helping individuals with IDD live their best lives and pursue meaningful employment in their communities.”

The Individuals with Intellectual and Developmental Disabilities Support Act addresses workforce challenges by incentivizing the recruitment and retention of DSPs, ensuring individuals with IDD receive necessary support to live safe, healthy, and independent lives. The tax credit program allocates:

• Up to $1,000,000 for fiscal year 2025-2026,
• $1,500,000 for fiscal year 2026-2027,
• $2,000,000 annually thereafter.

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So far this year, 1,061 bills have been introduced in the 119th Congress.

None of these bills would do anything to improve the lives of people with I/DD or autism.

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