November 29, 2024

VOR's Weekly News Update

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Finding homes for individuals with intellectual and developmental disabilities

Opinion, by Pat Swanson, The Cape Gazette, November 26, 2024

What will happen to my disabled son when I can no longer care for him, or ultimately when I die? That question hit me hard two years ago when I received a call from my husband’s work telling me he had collapsed and was headed to the ER. As I rushed to meet him, my concern for his health was quickly joined by concern for our 35-year-old son Andrew, a person with autism, a type of intellectual and developmental disability. Despite his desire to live outside our home, he has few residential choices in Delaware, so he still lives with us. In that moment, I was forced to deal with this reality; one I share with most members of A-Team Delaware, an advocacy group for people with and families of IDD that I am part of.

November is National Family Caregiver Awareness Month, so it is a fitting time to look at this concern.

Let’s start with facts. Roughly 75% of adults with IDD in Delaware still live with and are cared for at home by their parents, 37% of these live with parents ages 41-59, and 28% with parents over age 60. Additionally, there is a shortage of workers trained to provide the care or support services needed when parents can no longer provide this care or may need services themselves. Finally, a trend to deinstitutionalize or support living in smaller settings is increasing the need for trained workers/caregivers and the number of affordable places to live. This leaves few residential options for people with IDD other than remaining at home.

If we do nothing, we can see what the future holds for them. Steeped with good intentions, deinstitutionalization of people with mental illness began in the ’60s, and with it, the political promise for funding to build and run small community mental health centers. These centers were supposed to provide an infrastructure of supports to replace what they were receiving in an institution. This promise never materialized. Today we see the results. The population is indeed living in the community. But without the service infrastructure to support them, how does that look? As reported recently in the New York Times: “Over time, this has resulted in hundreds of thousands of Americans with mental illness left to toggle between living in homeless shelters, jails or the streets. The [mentally ill] are victims of a mental health system that is not designed to meet their needs – and of a society that has proved mostly indifferent to their plight.”

Similarly, Delaware falls seriously short of having an infrastructure to meet the needs of the IDD population. Having people live at home and dependent on their parents is not a long-term solution. A-Team believes the time is now to develop an infrastructure that includes a full set of housing options and services for citizens with IDD whose residential needs can range from drop-in to 24-hour support. How can we accomplish this? 

Continued

While we agree with much of Pat Swanson's sentiment, we would add the provision in Olmstead the says that for some individuals, an institutional setting may be the least restrictive and the most appropriate setting. We should support ICFs as part of the community for people with severe and profound I/DD and autism. We agree that other institutional settings, be they nursing homes or prisons, are not appropriate to the needs of people with ID/A.

The community-based model of care that doesn’t exist in any Montana community

By Darrell Ehrlick, Daily Montanan, November 28, 2024 

The only thing that Republican and Democratic governors seem to agree on is that no one likes the state hospital or the state forensic units, housed respectively at Warm Springs and Galen.

Both are old. Both are expensive. Both are located away from many other “populated” places in Montana. And, both seem based on something borrowed from decades earlier, rather than facilities meant to address a growing mental health and addiction problem in Montana.

For years, we’ve heard lawmakers talk about the need to get away from large institutional settings like Warm Springs and placing patients and services to places closer to patients’ homes. We like the phrase “community-based” providers instead of “state-run institutions” and it’s easy to see why.

But as we prepare for another legislative session in which lawmakers will talk about outsourcing services from places like Warm Springs or Galen, the immediate follow-up question should be: Where? Where are those community-based services?

It’s easy to see how large, out-of-state companies have come to Montana in order to allegedly help run social services. During Gov. Greg Gianforte’s first term, we’ve seen him outsource some services for unemployment and services to support childcare providers, all in the name of private business doing something more efficiently and better than the public sector, even though we haven’t seen definitive proof of either.

Lawmakers have distributed $300 million in one-time money for community-based support, but at a meeting earlier this week, four lawmakers were asked how that money was helping and none could give a clear answer if the extra funding was making any meaningful differences in Treasure State communities.

Still, there doesn’t seem to be a rush of providers or healthcare leaders running toward the Republicans’ plan of wanting to set up in-patient psychiatric centers or counseling programs. Yet, a cursory look around shows that we are continuing to expect our stretched and diminished social services agencies to do more with less.

Continued

Again, we need to re-think our system of services for people with disabilities. We have been investing in a system that only works for some, and leaves too many others behind. Why have there been no new residential models in the last 25 years? Why are there no alternatives to a large 60-bed or 250-bed institutional setting and a small 3-bed group home? Why are more and more families being forced to leave the workforce to look after a loved one with I/DD? We need new solutions, and we won't get them by insisting on doing the same things over and over again but expecting better results.

Texas - Nonverbal child left lying on school floor for 2 hours after shattering his femur, family says

By Jessica Willey, KTRK via CNN Newsource, November 27, 2024

A nonverbal child with autism in Texas was left lying on the floor for hours, crying in pain after a slip and fall at school.

The 11-year-old boy named Kyle was eventually taken to a hospital where he underwent surgery for a shattered femur.

Now, his parents are demanding answers from the school district.

Hermann Bensurto, Kyle’s father, is relieved to see his son is feeling better after the traumatic event three weeks ago.

Bensurto said his son was lying on the floor in a school classroom, crying in pain for two hours before he was given help.

The situation was even captured on video, showing Kyle crying out in pain while he lay on the floor, surrounded by two school employees.

“It was like an animal struggling on the road, and people just surrounding it waiting for him to die, that’s how I describe it. I’m sorry, but it looks like that way,” Bensurto said.

On Nov. 5, the family got the call from Quail Valley Middle School that Kyle, who is described as nonverbal with severe autism, wouldn’t get up off the floor.

Kyle’s mom drove to the school, where she found her son still lying on the floor. She then called her husband.

“I heard in the background the nurse was asking, ‘Do we need to call an ambulance?’ And I was like, what? They don’t know? My son has already been lying there for … two hours. So, I told them, ‘Yes!’” Bensurto said.

Kyle was finally taken to the hospital and admitted. Doctors discovered he shattered his femur, which required surgery to insert a metal plate and eight pins in his left thigh.

Bensurto doesn’t understand why his son was left on the floor in screaming pain for so long before getting help.

“You could hear on the phone that he was screaming … how come they don’t know what to do?” he said.

Joe Matthew, the family’s attorney, said he has watched the entire video of Kyle on the floor, which lasted two hours and 15 minutes.

He said the video shows Kyle slip and fall, but the rest was shocking.

“What do they [school employees] do? They just leave him on the ground, they leave him on the ground for two hours while they’re sitting around. They’re talking, they’re laughing, they’re eating lunch, they’re ordering orange chicken,” Matthew said.

Continued

How can Republicans Reform Medicaid?

Chris Pope, The Washington Examiner, November 26, 2024

The newly elected Republican Congress seems set to place Medicaid reform at the top of its legislative agenda. Previous reform attempts have stumbled due to fears that cuts would leave the poorest beneficiaries uninsured. But, rather than cutting payments for core services, Congress can best curb rising Medicaid costs by limiting high-spending states’ further expansions of benefits and eligibility. 

To claim federal Medicaid funding, states must provide a core package of healthcare benefits to low-income parents, children, and elderly and disabled people. But 63% of Medicaid spending comes from states opting to expand benefits and eligibility beyond what is required by federal law.  

Federal Medicaid spending surged from $265 billion in 2013 to $616 billion in 2023. This increase was partly due to COVID-19, but mostly because states exploited an extraordinarily lucrative revenue opportunity: For every $1 that states spend on most beneficiaries, the federal government will normally provide between $1 and $3 in matching funds. For beneficiaries made eligible by the Affordable Care Act, the federal match is $9 for every $1 spent, with no upper limit.

Although low-income states are entitled to more federal aid per dollar they spend, the wealthiest states with the deepest tax bases can put up many more dollars and claim more federal funding. For example, Delaware obtained $24,639 in federal Medicaid funding per poor resident in 2021, whereas Alabama received only $7,052.

The disparity in spending between states owes much to unilateral expansions of eligibility: In 2022, Delaware’s Medicaid program covered almost twice as many enrollees per poor resident as Alabama’s. Costly programs also offer more generous benefits: For instance, New York spent $9.1 billion in 2023 (up from $0.6 billion in 2016) on a Medicaid benefit to pay family members to care for elderly relatives, which even Gov. Kathy Hochul (D-NY) called “a racket.”

States are supposed to claim federal funds only for covered benefits, but they lack incentives to minimize improper payments. Medicaid’s enrollment has been concentrated among beneficiaries with incomes above the program’s supposed eligibility cutoff. In 2022, 26 million of 88 million enrollees did not know they were covered, yielding enormous windfalls for insurers to cover beneficiaries who did not use any medical services because they had other forms of insurance.

States have often accepted such arrangements in return for insurers using overpayments for purposes for which direct federal funding would be unavailable. This has allowed an expansion of Medicaid’s dark money arrangements, whereby states overpay medical providers for covered beneficiaries, with the understanding that surplus funds be used for purposes that are normally prohibited. For decades, states have used overpayments to hospitals to fund expenditures beyond healthcare, and such resources have increasingly been used to finance services such as abortion or treatment for illegal immigrants, for which federal aid is specifically prohibited. This year, the Biden administration doubled the limits on payments states could claim for hospitals. 

The new Republican-led Congress is therefore considering Medicaid reform to offset the cost of renewing the 2017 Trump tax cuts. Proposals include work requirements for able-bodied enrollees, reducing federal matching rates, and restricting dark money financing schemes. However, these don’t address Medicaid’s core underlying problem: unilateral spending expansions by the wealthiest states. Instead, they would likely provoke a backlash by leaving millions of beneficiaries suddenly worse off — including in Republican states that currently receive relatively little in federal funding.

Continued

Medicaid Expansion is a Red and Blue State Issue

By Jennifer Tolbert, Clea Bell, and Robin Rudowitz, KFF News, November 27, 2024

Although health care did not figure prominently in the 2024 presidential election, with President-elect Trump returning to the White House and Republicans controlling Congress, significant changes to Medicaid are expected. One potential target for federal spending reductions is the Affordable Care Act’s (ACA) Medicaid expansion. The ACA expanded Medicaid coverage to nearly all adults with incomes up to 138% of the Federal Poverty Level ($20,783 for an individual in 2024) and now provides states with an enhanced federal matching rate (FMAP) of 90% for their expansion populations. While the expansion was originally mandatory for states, a Supreme Court decision in 2012 effectively made it optional and as of November 2024 all but 10 states have adopted the expansion. Twelve states have “trigger” laws in place that would automatically end expansion or require other changes if the federal match rate were to drop below 90%.

Rather than repealing the ACA outright, some conservative and Republican proposals would instead lower the federal match rate for the expansion population from 90% to the standard Medicaid match rate, which is calculated based on a state’s per capita income and ranges from 50% to 83%. The Congressional Budget Office estimated in 2022 that reducing the match rate for the expansion group would save the federal government $631 billion over 10 years. This financing change would shift a substantial amount of Medicaid spending from the federal government to states. States would then need to decide whether to use states funds to make up for the lost federal funding or cut coverage. Given the challenges states would face replacing substantial lost federal funds, the health coverage implications would likely be significant and could reverse gains in financial security, access to care, and health outcomes. A large body of prior research shows that Medicaid expansion has helped to reduce the uninsured and improve access, affordability, and financial security among the low-income population.

More recent research shows improvements in health outcomes and continues to show positive effects for providers (particularly rural hospitals) and for sexual and reproductive health.

Because of the widespread adoption of the Medicaid expansion across states, the financial and coverage impacts will be felt by both states that voted for President-elect Trump and those that voted for Vice President Harris. This data note provides key facts on the Medicaid expansion using enrollment data as of March 2024 and FY 2023 spending data from the Medicaid Budget and Expenditure System (MBES).

Medicaid expansion has been adopted by 41 states including the District of Columbia, split nearly evenly between states that voted for Trump (21 states) and those that voted for Harris (20 states) (Figure 1).

Over the past ten years, Medicaid expansion has been broadly adopted by states led by Republicans and Democrats. Consequently, any changes to the Medicaid expansion authority or financing structure will affect both red and blue states. While the data are presented by states that voted for Trump or Harris in the November 2024 elections, there are five states with Democratic governors that voted for Trump (Arizona, Kentucky, Michigan, North Carolina, and Pennsylvania) and three Republican-led states that voted for Harris (New Hampshire, Virginia, and Vermont). In total, there are 19 expansion states with Republican governors, and 22 expansion states (including DC) headed by Democrats. Ultimately, it will be state governors and legislatures that will respond to any federal policy changes.

Continued

Slashing Medicaid for tax cuts would hurt millions

By Lisa Jarvis, Bloomberg Opinion via the San Antonio Express-News, November 27, 2024

Medicaid, the program that provides vital health insurance coverage to one in five Americans, is being targeted for deep cuts.

The effects could be devastating for some of the most vulnerable Americans, including children, pregnant women, seniors and people with disabilities. And data show that for children who lose coverage or access to basic health services, the consequences could be lifelong.

Republicans in Congress and other allies of President-elect Donald Trump are discussing significant changes to the program to help pay to extend the sweeping tax cuts he gave the wealthy in 2017.

Several proposals are reportedly under discussion, ranging from introducing work requirements to fundamental changes in how money for the program is provided to states. Funding is currently awarded based on how many people are enrolled, but under a block grant model, for example, states would be given a lump sum.

While not a talking point during the election, there are clues that an overhaul is coming. Trump has said he has no intention of cutting Medicare, Social Security, or defense spending. That leaves one big line item to target: Medicaid.

“Despite the fact that there is very little public discussion, despite the fact that Medicaid is very popular, there is a great deal of interest among some Republicans to make severe and disabling cuts,” says Joan Alker, a professor at Georgetown University’s McCourt School of Public Policy. “I think everything is on the table.”

One big unknown is how Dr. Mehmet Oz’s nomination as administrator of the Centers for Medicare and Medicaid Services might affect all of this. Every health policy expert I spoke with struggled to explain how Oz might approach the job, let alone his stance on Medicaid.

Trump’s pick to lead the Office of Management and Budget might be a better harbinger of what’s to come, Alker says. Last week, Trump named Russell Vought, who led the office during his first administration. Vought is one of the authors of Project 2025 and founder of the conservative nonprofit Center for Renewing America, which has proposed significant reforms to the program that would result in draconian cuts to funding.

Lawmakers floating these cuts will say they plan to protect some of the most vulnerable. The problem is trying to protect any one group comes at a cost to others. As McIntyre points out, seniors and people with disabilities account for about 23% of enrollees but just over half of overall Medicaid spending. These groups require more care, including some that can’t be accessed through other insurance. About 40% of kids in the US are covered by Medicaid, yet they account for less than 15% of the program’s overall budget, meaning even minor cuts would disproportionately impact them.

“There isn’t a ton of fat to be trimmed in the Medicaid program, so when you go looking for it, you end up hurting people,” says Adrianna McIntyre, a health policy expert at the Harvard T.H. Chan School of Public Health. “If there was a magic way to extricate funding, we would have done it already.”

Continued

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Washington - Care providers for developmentally disabled people ask Legislature for more pay

By Laurel Demkovich, Washington State Standard, November 26, 2024

Providers of supported living services for people with intellectual and developmental disabilities are asking the Legislature for more funding to increase wages in an increasingly difficult-to-staff field.

People with disabilities can sometimes require intensive 24/7 care to help them live as independently as possible. Those who meet certain eligibility guidelines can qualify for in-home or group home care with costs covered by the state. But workers who provide these services, known as direct support professionals, often earn low pay, leading to high turnover, staff shortages and long waitlists.

Advocates are asking lawmakers to increase rates for these workers by 9.5% in both 2026 and 2027, which would cost the state roughly $99 million a year. That’s based on recommendations from a 2023 Department of Social and Health Services rate study report that found providers were severely underpaid compared to living wage benchmarks. At the time, the average hourly wage for a direct support professional was $20.12.

“Pay is one of the most needed things to stabilize supported living,” said Randy Hauck, executive director at Community Living, a nonprofit that provides supportive living services.

Most of the funding for direct care professionals comes from Medicaid. The money flows mostly through the Department of Social and Health Services Developmental Disabilities Administration which determines the rate at which staff get paid based on need and available funding.

The Department of Social and Health Services has not submitted a 2025 budget request to Gov. Jay Inslee for the rate increase. Other efforts to secure the funding could run into a roadblock as lawmakers are facing a deficit over the next four years estimated to be in the $10 billion to $12 billion range.

Washington has about 14,000 direct care professionals who serve about 4,600 people. But the turnover rate in this field is high, currently around 37%. That can be especially problematic for people with developmental disabilities who rely on consistent relationships.

“If you bring in 10 people that you’re training, you look around the room and know three or four of them are going to be gone by the end of the year,” Hauck said.

Continued

Justice Department, Maine settle lawsuit over treatment of children with disabilities

By Eric Russell, Portland Press-Herald, November 26, 2024

Maine must strengthen its community-based services for children with behavioral health challenges to keep them from being placed outside the home, according to an agreement with the U.S. Department of Justice filed Tuesday in federal court.

The agreement ends a lawsuit filed in September by the federal agency, which said the state has been violating the Americans with Disabilities Act by “unnecessarily segregating children with behavioral health disabilities in hospitals, residential facilities and a state-operated juvenile detention facility.”

Maine officials were put on notice in 2022 about alleged violations of the ADA, and the Justice Department filed suit this year after failing to see adequate progress.

Kristen Clarke, an assistant attorney general with the Justice Department, said the agreement ensures “that children with disabilities can live at home surrounded by the love and support of their families rather than isolated away in facilities.

“We know that too many children with behavioral health disabilities end up in juvenile justice settings or in out-of-home placements, often in different states far from their families, disrupting their lives in ways that can cause permanent harm,” she said. “Under this agreement, more children will have access to community-based services and in-home behavioral health services so that they can grow up surrounded by family and loved ones.”

Continued

Maine proposes major staffing changes for assisted living and residential care facilities

By Rose Lundy, The Maine Monitor, November 24, 2024

In the first major update to assisted living and residential care regulations in more than 15 years, the Maine Department of Health and Human Services has proposed significantly increasing staffing requirements, among other changes.  

Advocates have applauded this step as necessary to meet residents’ increasing medical needs and address gaps in care, but facility representatives say the associated costs could lead to “catastrophic outcomes.”

During a public hearing earlier this month, the department proposed big changes to the current staffing ratios, including doubling the number of direct care workers at residential care facilities overnight and setting stricter rules in memory care units that go beyond the state and federal staffing requirements at nursing homes.

The new expectations, which are not accompanied by additional funding, came as a surprise to most in the industry, who thought the regulations would be limited to the licensing structure.

The proposed updates come after an 18-month investigation into the state’s largest residential care facilities published by The Maine Monitor and ProPublica found dozens of resident rights violations including abuse and neglect incidents, more than a hundred cases where residents wandered away from their facilities and hundreds of medication and treatment violations. Experts, advocates and providers said requiring higher staffing levels, better training and more nursing care would help address these problems.

Assisted living programs — which the state currently categorizes in 10 tiers — serve older Mainers, adults with intellectual and developmental disabilities and people with mental illness. These facilities offer less medical care than nursing homes but have expanded in recent years as people opt to live in more home-like and independent settings.

Continued

Massachusetts - Opinion: Outrageous to pit special-ed costs against striking teachers’ pay

By Barbara Salisbury, The Boston Globe, November 28, 2024

I was outraged by the Nov. 18 front-page story “Huge special-ed bills hamstring districts.” It cites the view of officials in some Massachusetts communities that the high cost of providing specialized education for students with disabilities stands in the way of meeting striking teachers’ demands. This position is a misinformed, antiquated way of thinking about the challenges our school districts face.

Pitting spending on special ed against the need to raise salaries for public school teachers is specious. Government budgets are a reflection of our values. Why is spending on meeting the needs of students with disabilities any more of the cause of inadequate funding for teachers’ salaries than anything else the government spends money on?

Meanwhile, where’s the analysis of how well students with disabilities do in special-ed schools as compared with how they do in public schools? Students are outplaced only when their public schools are unable to meet their needs. Rather than examining whether students’ outcomes in special-ed schools are worth the money, the article suggests that many believe spending on all students in public schools is more important than spending on students with disabilities. This is the kind of thinking that would take us back to a time when people with disabilities were ignored.

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How companies plan to adapt to new Illinois Dignity in Pay Act

By Matt Christensen, KWQC Iowa, November 27, 2024

A new law in Illinois will require people with intellectual disabilities to be paid a normal minimum wage.

Supporters say it brings dignity to those workers, but some worry job providers will have to cut programs to meet the new requirements.

Kristen Hammond is 47 and has worked at the Arc of the Quad Cities Area for 17 years.

She makes boxes at the Arc’s business hub, which employs people with disabilities. Hammond used to get paid based on how many boxes she processed, but now she earns a straight wage.

“It’s a lot better instead of getting paid per piece,” Hammond said.

Starting next year, all people with disabilities will be paid like Hammond– a minimum of $15 an hour. It’s a law change designed to bring dignity to workers with disabilities.

But now some employers worry they won’t be able to cover the wage increases without cutting jobs or other programs.

Employees at the Workshop in Galena, Illinois, run a thrift store. Some work in an on-site kitchen, shuttle meals to jail inmates or work in the laundry that cleans sheets and linens for local businesses.

“It’s a sense of everyday life, like you and I, you know, we wake up, we know we’re going to do for the day, we come to work, we earn a paycheck,” said Laura Moyer, retail director. “You know, we’re we’re contributing to our community. I think it brings them joy and a sense of a normal life.”

The Workshop is preparing for what comes next. A temporary grant will help cover the mandatory wage increase for now, but it needs a long-term plan to protect the jobs it offers now.

“We’ll have to pay minimum wage,” said Alyssa Havens, The Workshop executive director. “That’s that’s still all – we really don’t know. We’re just going to keep an open mind and with the proper resources, we’ll be able to adapt.

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VOR SUPPORTS:

S.4120 / H.R.,7994 - The Long-term Care Workforce Support Act - This bill would increase FMAP and offer grants to all DSPs and caregivers for the elderly and for people with I/DD and autism. VOR worked with members of the Senate Aging and Diability Policy Committee and other peer organizations to improve this bill from its original form. It is not perfect, and it contains one major flaw to which we continue to object (the permanent reauthorization of the Money Follows the Person Rebalancing Demonstration Program) but we will continue to work to improve this bill and remove its flaws.

S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

H.R.7267 - Disability Community Act of 2023 To amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental disabilities.

H.R.485- Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

S.7302 - The Credit for Caregiving Act of 2024 Sen. Michael Bennett (D-CO) This bill would amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers. In the case of an eligible caregiver, there shall be allowed as a credit against the tax imposed by this chapter for the taxable year an amount equal to 30 percent of the qualified expenses paid by the taxpayer during the taxable year to the extent that such expenses exceed $2,000. The tax credit is not to exceed $5,000 per year.

H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.

S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.

VOR OPPOSES:

H.R.8109 - To Make Permanent the Money Follows the Person Rebalancing Demonstration Program. MFP has been used to erode the ICF system. We call for congressional hearings, studies by the GAO, and audits by the Congressional Budget Office before any action should be taken to reauthorize this program.

S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.

S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.

S.1193 / H.R.2708 - The Latonya Reeves Freedom Act of 2023

Sen. Michael Bennett (D-CO) / Rep. Steve Cohen (D-TN) Allegedly written and strongly supported by ADAPt and other self-advocacy groups, this is a watered-down version of the Disability Integration Act. It is strongly biased against care in larger congregate facilities, and falls just short of seeking the elimination of ICFs.

VOR HAS SIGNIFICANT CONCERNS WITH:

S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.

S.3118 - The HCBS Relief Act of 2023

Sen. Boby Casey (D-PA) A bill to provide for an emergency increase in Federal funding to State Medicaid programs for expenditures on home and community-based service. This bill, like others above, only provides funding for people receiving Long-Term Services and Supports through HCBS, denying any support for people in nursing homes or ICFs.

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