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.
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VOR's Winter Networking Meeting
January 27, 2025
4 pm Eastern / 3 pm Central / 2 pm Mountain / 1 pm Pacific
On Zoom
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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.
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Please join us on Capitol Hill
May 12-14, 2025
VOR's Annual Legislative Initiative
Washington, D.C.
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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 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
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Support Sheltered Workshops & 14(c) Programs | |
The Department of Labor's Wage & Hour Division has issued a proposed role in the Federal Register that would phase out the use of Commensurate Wages under Section 14(c) of the Fair Labor Standards Act.
There is a comment period from now until January 17th, and we ask our members to send comments to the Wage & Hour Division to express your opposition to this rule and your support of 14(c) provisions for people with intellectual disabilities and autism.
To download the document from VOR's website, please click here
To post a comment opposing this rule, please click here
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UnitedHealth Is Strategically Limiting Access to Critical Treatment for Kids With Autism
by Annie Waldman, ProPublica, December 13, 2024
Reporting Highlights
- Secret Playbook: Leaked documents show that UnitedHealth is aggressively targeting the treatment of thousands of children with autism across the country in an effort to cut costs.
- Critical Therapy: Applied behavior analysis has been shown to help kids with autism; many are covered by Medicaid, federal insurance for poor and vulnerable patients.
- Legal Questions: Advocates told ProPublica the insurer’s strategy may be violating federal law.
There was a time when Sharelle Menard thought her son would never be able to speak. She couldn’t soothe Benji when he cried, couldn’t read him books he could follow, couldn’t take him out in public.
Benji was nearly 3 when he was diagnosed with severe autism and soon after started a specialized therapy to help him develop basic skills. After two years in treatment, his murmuring gave way to small words, with “bubbles” among the first. To celebrate, Menard powered up a bubble machine she found at the dollar store, and for hours, they watched the iridescent orbs drift over their porch.
Menard, who is raising Benji alone in south-central Louisiana, began to picture a future for her son that diverged from the stories she’d heard about some kids with similar diagnoses, who grew up still unable to manage their frustrations and had to live in nursing homes or institutions.
But now, she’s worried again.
The insurer that has been paying for her son’s therapy, UnitedHealthcare, has begun — to the befuddlement of his clinical team — denying him the hours they say he requires to maintain his progress. Inside the insurance conglomerate, the nation’s largest and most profitable, the slashing of care to children like Benji does have a reason, though it has little to do with their needs. It is part of a secret internal cost-cutting campaign that targets a growing financial burden for the company: the treatment of thousands of children with autism across the country.
Continued
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Trump Signals His Administration Will Investigate Debunked Link Between Vaccines And Autism
By Michelle Diament, Disability Scoop, December 11, 2024
President-elect Donald Trump says he’s “open to anything” when it comes to understanding the dramatic rise in autism prevalence, an approach that advocates worry could distract from making real gains for those with the developmental disability.
In an interview with Kristen Welker on NBC’s “Meet the Press” over the weekend, Trump suggested that Robert F. Kennedy Jr., his nominee to lead the U.S. Department of Health and Human Services, would have wide latitude to look into the causes of autism, including investigating the long-discredited connection between autism and vaccines.
“I’m open to anything. I think somebody has to find out,” Trump said in response to questions prompted by Kennedy’s skepticism of vaccines. “If you go back 25 years ago, you had very little autism. Now you have it.”
The estimated prevalence of autism has increased from 1 in 150 U.S. kids in 2000 to 1 in 36 currently, according to the Centers for Disease Control and Prevention. Experts attribute the rise to improved awareness and identification.
Kennedy, however, has spent years blaming the increase in autism on childhood vaccinations. That idea originated from a 1998 study, which has since been retracted. The doctor behind the study had his medical license revoked and subsequent research has found no link between autism and vaccines.
Trump told Welker that he’s “not against vaccines,” but called the rise in autism over the last two decades “pretty scary.”
“I mean, something is going on,” he said. “I don’t know if it’s vaccines. Maybe it’s chlorine in the water, right. People are looking at a lot of different things. I want them to look at everything.”
The comments about autism and vaccines come in contrast to the position of several national autism advocacy groups, including Autism Speaks, the Autism Society of America, the Autistic Self Advocacy Network and the Autism Science Foundation, all of which align with the scientific consensus that vaccines do not cause autism.
“We are concerned,” said Kim Musheno, vice president of public policy at the Autism Society, about Trump’s comments. She pointed to a recent statement that her group issued urging “policymakers and leaders to prioritize accurate information and scientific integrity in all discussions and decisions affecting public health.”
Alison Singer, president of the Autism Science Foundation, said she welcomed interest in studying the causes of autism, but indicated that efforts to revisit any link to vaccines are misguided.
“We can’t let the discredited vaccine hypothesis become a distraction here,” Singer said. “Vaccines are probably the best studied potential cause of autism, and all the studies come back the same; there is no relationship.”
Continued
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A plea from aging parents of adult children with intellectual disabilities/autism
By Cindy Jennings, Pittsburgh Post-Gazette, December 9, 2024
For decades, we have fought tirelessly for our adult children with intellectual disabilities and autism (ID/A). As parents now in our 60s, 70s and 80’s, we have spent a lifetime navigating a confusing bureaucratic system to secure the resources our loved ones need to live safely and with dignity.
Despite our efforts, many of us are exhausted, demoralized, and fearful for the future. We live in constant fear: What will happen to our children when we are no longer here?
State help
Individuals with ID/A may access the Department of Human Services (DHS) Home and Community-Based Services (HCBS) waivers through either the Office of Developmental Programs (ODP) or the Office of Long-Term Living (OLTL) funded through the Commonwealth’s Medicaid program. (We apologize for all the acronyms.)
Both programs face challenges in recruiting and retaining Direct Support Professionals (DSPs) however, rates for their services in OLTL programs are significantly lower despite providing similar supports.
Last year, Gov. Josh Shapiro’s recommendation for the ODP budget was constructed to reflect actuarially sound rates, in accordance with PA Rules and Regulations. Those rates were intended to raise DSP wages, reduce waiting lists, and stabilize the underfunded system. OLTL services received no such study or rate increase.
The final enacted budget reduced the Governor’s ODP proposal by $93 million. While we appreciate the $270 million allocated to increase DSP wages in ODP programs and the $100 million to begin the process of ending the ODP Emergency Waiting list, the final budget still left aging families to bear unsustainable caregiving burdens performing as DSPs for our loved ones.
Our anxiety is compounded by the incoming Trump Administration’s goal to convert Medicaid into block grants, capping federal funding and giving states discretion to scale back Medicaid services. A block grant would diminish already struggling programs and result in devastating consequences for families across the Commonwealth.
Short-falling funding
For years, we have shared our stories with legislators, attended hearings, and advocated for change. Many of us have visited our legislators so often we know them and their staff members by their first names.
Yet, even when funding increases, it often falls short of what is required. As we age, our strength and energy are waning. The relentless strain of caregiving, coupled with fighting for resources, has pushed many of our families to the brink.
Despite setbacks, we remain committed to advocating for meaningful change. We urge Pennsylvania’s leaders to:
• Make ID/A issues a priority in the FY 25/26 budget.
• Fully restore the $93 million to fund ODP rates and DSP wages as determined by the Commonwealth’s own actuarial study.
• Oppose any efforts to convert Medicaid into a block grant, which would devastate the ID/A community.
• Build a system that does not rely on families to fill gaps caused by inadequate funding.
• Prioritize individualized supports that address significant needs across all programs, ensuring equitable access and reducing risks of neglect or poor outcomes.
We trust that the governor and many legislators understand the daily crisis we face. But understanding is not enough — we need action. Budgets cannot continue to balance themselves on the backs of families like ours.
Families are exhausted, and the future of our loved ones hangs in the balance. The ID/A system must stop depending on aging parents to do the work of professional caregivers.
Despite setbacks, we remain hopeful. We love our sons and daughters. We will keep fighting and hoping that our wait for change will not grow longer.
Read the full editorial here
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Millions could lose health insurance to pay for Trump tax cuts
By Joseph Burns, Association of Health Care Journalists, December 11, 2024
Republicans in Congress and the incoming Trump administration could make deep cuts in funding for two programs: Medicaid and the Affordable Care Act (ACA). If spending goes down significantly, at least nine states could end their Medicaid expansion initiatives, throwing millions of low- and moderate-income Americans off of their government-funded health insurance, health policy experts predict.
As we reported last month, a Republican-backed Congress and President-elect Trump are expected to cut spending forMedicaid and the ACA. During his presidential campaign, Trump said he would not cut Medicare or Social Security, making Medicaid the next largest target. Those cuts are designed to offset the costs of Trump’s planned tax cuts.
When Congress passed the ACA in 2010, lawmakers included a provision to pay 90% of the cost of expanding Medicaid coverage for people living in poverty, leaving the states to pay the remaining 10%. That year, almost 49 million Americans (16%) were uninsured. However, as a result of the ACA and the Medicaid expansion, more than 26 million Americans (7.9%) were uninsured by the first half of 2024, according to reports from the National Center for Health Statistics.
The effects of cutting Medicaid
“Cuts in Medicaid will definitely cause a big surge in the number of uninsured Americans,” Edwin C. Park said. Park is an expert on financing for Medicaid, the Children’s Health Insurance Program (CHIP) and the ACA. He is also a research professor at the Georgetown University McCourt School of Public Policy’s Center for Children and Families.
Park’s prediction is based on the 2023 budget from the Center for Renewing America (CRA) and on last year’s budget from the Republican Study Committee (RSC), which calls for cutting nearly half of the federal funding for Medicaid, CHIP and the ACA’s premium tax credits over the next decade, Park wrote. The CRA is a right-leaning nonprofit organization that Russell Vought founded. Vought is the former director of the federal Office of Management and Budget under Trump and has been named to fill the same job in the coming year.
As Trump prepares to return to the White House and the Republicans take full control of Congress in 2025, cutting funds for the ACA’s Medicaid expansion could put more than 3 million adults in nine states at risk of losing their health coverage, Phil Galewitz reported for KFF Health News. If federal Medicaid cuts are deep enough, those nine states (Arizona, Arkansas, Illinois, Indiana, Montana, New Hampshire, North Carolina, Utah, and Virginia) have trigger laws that would end their Medicaid expansions, he explained.
Revisiting block grants or per-capita caps
In 2017, conservative groups and Republicans in Congress endorsed using block grants or per-capita caps to slash federal matching payments for the ACA and Medicaid expansion, as we explained in our earlier reporting.
Either method would limit federal spending and likely force states to cut what they spend as well, said Akeiisa Coleman, a senior program officer for Medicaid at the Commonwealth Fund. Under block grants, each state would get a set amount; with per-capita caps, states would get a certain amount per Medicaid or CHIP member.
“There would be a reduction either way,” Coleman explained. “It could be most extreme under a block grant, because there’s not any acknowledgment that there could be an increase in the number of low-income people, or even the number of people residing in the state, who would be eligible for Medicaid.”
Both are onerous, however, because neither would be indexed to the growth in health costs, which rise faster than the standard, the Consumer Price Index, she noted.
Another problem with block grants is that they led to a fiscal and debt crisis when they were used in Puerto Rico, Coleman said. In 2021, a Commonwealth Fund report showed that using block grants in Puerto Rico led to large federal Medicaid funding shortfalls that contributed to the commonwealth’s fiscal and debt crisis.
The problem with block grants or per-capita caps is that states would be responsible for all Medicaid costs that exceed funding levels for any reason, the report showed.
Read the full article here
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South Carolina - Justice Dept. suit accuses SC of violating ADA
By: Robert Cox, WSPA-7 News, December 9, 2024
The Justice Department has sued South Carolina, alleging the state violated the Americans with Disabilities Act by unnecessarily segregating adults with mental illness in adult care homes.
According to the Department of Justice, the ADA and the Supreme Court’s decision in Olmstead v. L.C require state and local governments to ensure that the services for adults with mental illness are provided in the most integrated setting appropriate.
The lawsuit alleges South Carolina unnecessarily sent adults with mental illnesses to care homes rather than provide community-based services and supportive housing to keep people in their own homes and communities.
The DOJ said the failure resulted in more than a thousand adults with mental illness being segregated in adult care homes for years and more continue to enter facilities each month.
“People with disabilities in South Carolina can and must be able to receive services in their own homes, rather than being isolated in institutions,” said Kristen Clarke, assistant attorney general for the Justice Department’s Civil Rights Division. “The Civil Rights Division will continue to ensure that people with disabilities can receive the services necessary to enable and empower them to leave institutions, and participate fully in community life.”
The goal of the lawsuit is to get the state to support more community-based services.
A spokesman for Governor Henry McMaster said it is not surprising that the current administration is confused about healthcare in South Carolina.
“However, this lame-duck DOJ, which has a track record of political lawfare, chose to race to the courthouse in the waning days of the Biden Administration rather than acknowledging state agency leaders’ responsive, collaborative communications,” said spokesman Brandon Charochak.
Continued
Note: The emphasis in the last paragraph was mine. It was not in the original article.
To see the DOJ's statement on this lawsuit, click here
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Alabama’s special education funding: Rising needs, rising costs
By Trisha Powell Crain, Alabama Daily News, December 9, 2024
Alabama lawmakers will meet today to continue examining whether the state’s 1995 formula for funding education is still adequate. Special education costs, which are rising rapidly, play a significant role in the debate.
School officials are identifying more students in need of special education services than they did five years earlier: 13% of all students in 2018 versus 18% in 2023 according to federal report card data. Providing these services – from assessments to additional teachers – comes at a high cost.
According to data produced by the Alabama Department of Education, in the 2022-23 school year, Alabama spent $891 million on special education for 131,000 students with disabilities. These costs – for teachers, services, transportation, testing and supplies – are in addition to the expenses of general education programs that children with disabilities participate in.
Federal funding from the Individuals with Disabilities Education Act (IDEA) covered just $179 million, or 20%, of the total.
The remaining $712 million had to come from state and local funding, with $36 million of that provided through temporary federal pandemic relief funds.
This heavy reliance on state and local funding underscores a key question lawmakers face: Is Alabama’s current funding system equitable and enough to meet the needs of all students?
Federal funding falls short
Many assume that IDEA, as a federal law, comes with significant federal funding. However, the reality is starkly different. Nationally, federal funding covers only around 14% to 17% of the actual costs of special education according to funding experts, leaving states and localities to shoulder the rest.
There’s also a common misconception that Congress promised to fund 40% of special education costs. Tammy Kolbe, a special education funding expert and researcher with the American Institutes for Research, clarified this misunderstanding.
Kolbe said the 40% figure – the most the feds were expected to pay for special education – is actually based on the count of students with disabilities during the 2004-05 school year. And the figure used for the base per pupil amount was the national, not state or local, average per pupil expenditure.
The rest was always up to the states and localities, she said.
Local wealth drives inequities in funding and outcomes
The reliance on local funding creates significant disparities between districts. Wealthier districts with higher tax bases can allocate more resources to special education than poorer districts can.
For instance, Mountain Brook City schools spent $9.5 million on special education last year for 700 students with disabilities. Local funding covered 62% of those costs, while federal IDEA funds contributed just 9%.
This financial flexibility likely contributes to better outcomes: 55% of Mountain Brook’s students with disabilities reached proficiency in English language arts, compared to just 17% statewide.
The gap in math was nearly as wide. In Mountain Brook, 40% of students with disabilities reached proficiency, compared to 9% statewide.
By contrast, Eufaula City schools spent $2.7 million on special education for 1,100 students with disabilities. Local funding accounted for only 2%, while IDEA funds covered half the total. Student outcomes reflected these resource gaps, with just 13% of students with disabilities reaching proficiency in English language arts and 3% reaching proficiency in math.
“Money matters,” Kolbe said. “And if, in fact, a school district doesn’t have access to adequate funding – and adequate funding includes general education and special education funding – our research suggests that they’re less likely to identify a child for special education.”
Continued
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Massachusetts - Legally blind and quadriplegic woman ‘thriving’ at Hogan Center
By Dave Kassel, The COFAR Blog, December 12, 2024
After initially being denied a placement at the Wrentham Developmental Center, Kristen Robinson has been living and “thriving” since June at the Hogan Regional Center, her sister, Kim Meehan, said last week.
Kim said the family is now ready to talk about the happy outcome of their months-long struggle to get Kristen, who is 51 years old, into an Intermediate Care Facility (ICF) in Massachusetts.
“She (Kristen) is so happy,” Kim said. “ She’s joyful, cared for, loved. They love her at Hogan. She’s treated the way she should be treated.”
Hogan, which is in Danvers, and the Wrentham Developmental Center are the state’s two remaining ICF-level congregate care centers. But as we’ve noted many times, it is extremely difficult for people to get admitted to them.
As we reported in May, then Department of Developmental Services (DDS) Commissioner Jane Ryder initially promised Kristen’s family she would admit Kristen for evaluation and rehabilitation to Wrentham’s May Center medical unit.
But Ryder reneged on that promise just a few days later, saying she hadn’t been aware that only Wrentham Center residents are admitted to the May Center unit. This was despite the fact that Kristen is profoundly intellectually disabled, legally blind, and quadriplegic, and has seizure disorder and severe dysphagia, a medical condition that causes an inability to swallow.
DDS rarely admits individuals to either ICF because the Department maintains that so-called community-based residential settings are less “restrictive.” But DDS had been unable to find either a community-based group home or a nursing home that could meet Kristen’s needs.
Yet, while Ryder did go back her promise to admit Kristen to Wrentham, Kim said Ryder then gave the family some other options. One option was for an “evaluation” of Kristen at Hogan; and the other options were for short-term placements at either of two private rehab facilities or a state-operated group home.
Kim said the family visited all of those settings and selected Hogan even though it is a three-hour round trip from Kim’s home in Norfolk. “We felt she would be safe there,” she said.
Kristen was admitted to Hogan on June 17. It is not clear whether the placement is considered by DDS to be permanent, but Kim said she and Karen are prepared to fight to ensure that she remains there.
Continued
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New York - What does NY's I/DD community need in 2025? A stable care system - Opinion
By Mike Alvaro (President of NY Disability Associates and Cerebral Palsy Associations of NY State),
USA Today network, via the Times Telegram, December 10, 2024
Aretha Franklin’s iconic demand for R-E-S-P-E-C-T resonates today as a rallying cry for New York’s disability community— a field that has long been undervalued despite its critical contributions to our state.
People with intellectual and developmental disabilities — I/DD — remain insufficiently integrated into our health system, schools, and communities, while the dedicated workers who support them are denied the dignity of a living wage. These workers, whose salaries and benefits account for over 70% of the funding received by providers, are paid far less than their counterparts employed by the state. Meanwhile, the broader disability sector — a powerhouse that generates $14.3 billion in economic output, supports nearly 195,000 full-time jobs, and contributes $2.2 billion in tax revenue — must beg Albany year after year to increase rates to keep up with inflation.
On Nov. 19, hundreds of advocates, people with disabilities and the dedicated staff that support them rallied in Albany and called on Gov. Kathy Hochul to support a stable care system for New Yorkers with I/DD. That system has been hard hit by a workforce crisis compounded by our inability to offer a living wage and years of underfunding that has pushed many providers to reduce their operations.
While Hochul has supported the disability community in recent years, we urge her to solidify that commitment by prioritizing the following: a 7.8% Medicaid rate increase; creating a wage commission to develop a sustainable plan for adequately compensating direct support professionals, or DSPs; and ensuring that all disability service providers have access to the capital necessary to upgrade facilities where individuals live, spend their days, and receive essential services.
Current Medicaid rates fall drastically short of covering the true costs of quality care, including staffing, housing, food, electricity, and transportation. From 2019 to 2024, overall inflation in the U.S. rose by 24.8%, with food costs surging 29.3% and transportation costs climbing 27.1%, according to the U.S. Bureau of Labor Statistics and Experian. During that period, Medicaid rate increases for disability providers amounted to less than half of those inflationary rises, leaving providers unable to keep pace with skyrocketing costs.
For organizations whose sole funding source is Medicaid, such inadequate adjustments effectively amount to funding cuts. This systemic underfunding jeopardizes essential services and perpetuates a workforce crisis. DSPs care for some of our most vulnerable neighbors and are paid far below a living wage, despite their critical contributions. We deeply value our workforce and the people they serve, and we urge Governor Hochul to show the same respect by including a 7.8% rate increase in her executive budget.
Furthermore, we ask that the governor create a wage commission to evaluate wages across the human services sector. DSPs in the non-profit sector support over 85% of the people in the I/DD system, yet our providers are funded at levels that do not fully value the essential work they do, resulting in chronic staffing shortages and high turnover in non-profit agencies, jeopardizing the quality and continuity of care. The commission would develop a comprehensive plan to raise frontline staff wages and address wage compression—an issue that cannot be resolved by establishing a wage floor or new minimum wage.
Continued
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Connecticut - DSS Study Suggests MCOs Don’t Make Sense For HUSKY
by Ellen Andrews, Ph.D., CT News Junkie, December 10, 2024
Last Friday, the state released a consultants’ report exploring the Governor’s controversial plan to bring private insurers back to run Medicaid in Connecticut.
The report’s authors agree with advocates that there is no evidence that MCOs control costs or improve quality or access to care. They also agree that HUSKY, our state Medicaid program, is doing very well compared to other states. Some advocates have valid concerns with the report, especially for people with disabilities and seniors, but the authors acknowledge that more study is needed to craft solutions to these problems. There are caveats and lots of questions, but Connecticut is good at finding effective solutions that work, through public, inclusive policymaking.
In 1996, Connecticut like most states brought in private Managed Care Organizations (MCOs) to run HUSKY. Very soon it became clear that the arrangement wasn’t working. Complaints flooded legislators’ offices, costs of the program shot up, providers fled the program, and DSS staff were overwhelmed. Since they left in 2012, access to quality care is up and Connecticut is a national leader in Medicaid cost control.
Despite this, in April, Gov. Ned Lamont was developing a plan to return MCOs to the program. Resistance to the idea was immediate and strong across interest groups and legislators. In response, DSS engaged consultants to survey the program’s landscape, identify strengths and weaknesses, and evaluate whether MCOs are an answer to any identified problems.
The well-researched report released last week found that “CT Medicaid performs well on most health care outcomes and has lower per-enrollee costs than its peer states.” Our per member costs are 14% lower than Northeastern states and are growing more slowly. HUSKY’s administrative burden is less than half what states with MCOs spend. Our program also performs better than most states on about 70% of Medicaid quality measures. Ninety seven percent of HUSKY providers are satisfied with the program and provider participation grew 5.4% from 2021 to 2022.
Continued
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What's Happening In Your Community?
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Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?
Contact us at info@vor.net
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[Please click on blue link to view information about the bill]
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.
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