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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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Take Action!
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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Congressional Report
In the waning days of the 118th Congress, several bills that affect the lives of people with I/DD and autism have passed through both chambers and are headed to the President to sign into law.
The most notable of these bills is the Autism CARES act. While it isn't all that the severe / profound autism community had hope for, it is a step forward, and it is indeed good news that the 118th Congress managed to pass this bill at all.
Republican Marc Molinaro, who lost his seat in the House next week, did manage to pass two bills to help the disability community at large with his "Think Differently" Initiative. The "Think Differently Database Act" would crate a comprehensive and easy-to-access national web to help individuals access resources that meet their unique needs. The "Think Differently About Transportation Act " would demand that Amtrak improve accessibility for people with disabilities.
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Opinion: Who "Neurodiversity" Left Behind
By Freddie DeBoer, Substack, December 23, 2024
Recently I received an email of a type of that I’ve gotten occasionally in the past several years, from a mother of a severely autistic adult. Her intent was familiar: frustration with autism discourse and disability rhetoric generally, along with gratitude that someone would say what she has always wanted to say but which she felt bullied out of saying. She finds the autism disability community to be self-righteous, totally out of touch with her son and his practical needs, shameless in shouting down anyone they don’t like, and genuinely scary, given their willingness to scream at those who disagree with them. She told me she feels like anyone who publicly criticizes them ends up on a list, and that people on that list end up shunned. I’m not sure if she meant it metaphorically or literally. But I understand where she’s coming from either way.
That’s something I’ve heard so many times, in the past several years - people who are affected by disability, whose lives are intimately connected to disability, yet who feel that they have no right to have an opinion because standpoint theory has been so ruthlessly enforced in the disability discourse. When I was a guest on a podcast hosted by three women with adult schizophrenic children, they told me that they were glad I was there to say the things they couldn’t say, not having a psychotic disorder themselves. It broke my heart. They had spent their best years fighting to keep their severely disturbed children alive and out of long-term institutions; they had sacrificed so much. Of course they have the right to share their opinions about schizophrenia or mental health or disability or whatever else they would like to. And so do you and everyone else in the world because that is what democracy is. I am entitled to speak on “marginalized identities” to which I do not belong because I am a part of mankind.
A lot of people share my great discontent with the disability activist community and how they have fundamentally changed what it means to be disabled, what a disorder is, and whether autism in particular is a disease or disorder at all.1 But they’re scared by the rhetorical ferocity of the activist crowd, and I don’t blame them. And there are clear consequences. Prior to 2000 or so, a majority of what was written about autism directly concerned severe autism2, but in the present era, that prevalence has shrunk dramatically, in favor of books and essays and podcasts and YouTubes and TikToks and more that front people whose autism has never prevented them from flourishing in the most elite spaces in American meritocracy. (I am working on quantifying this change for the book I’m writing on these and related issues.) The public face of autism has changed from the undoubtedly problematic portrayal of the disorder in the 1989 film Rain Man, a character who was lovable but who was also obviously severely disabled, to contemporary characters whose autism does not result in any particular difficulties at all; they are, instead, simply quirky and adorable and wise and sensitive and lacking in any problems that do not stem from the world’s awful treatment of people with autism. If you’re someone who has struggled to care for a person whose autism has made them unable to communicate verbally, reliant on diapers even into adulthood, incapable of feeding or bathing themselves, maybe inclined to repetitively injure themselves…. Well. Perhaps the change in focus does not seem especially salutary.
This, of course, is the gentrification of disability. Autism was a neighborhood that was unfairly seen as hardscrabble and rundown by the “neurotypical” world. But a group of autistic people with an unusual amount of privilege decided that it was a great spot to set up shop, they fancied it up, they made more and more of it in their own image, and before you know it, they owned the place. In doing so they drove the original residents out of town.
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62% of Americans Believe the Government Should Provide Healthcare Coverage
By Briana Contreras, Managed Healthcare Executive, December 20, 2024
Data from Gallup’s recent, annual Health and Healthcare survey revealed that 62% of adults in the U.S. believe it’s the federal government’s responsibility to provide healthcare coverage for all Americans.
Now at the highest percentage in over a decade, this number has rebounded from 42% in 2013 during the rollout of the Affordable Care Act (ACA), also known as Obamacare.
Historically, between 2000 and 2008, a majority of Americans supported the idea that the government should provide healthcare for everyone. However, these opinions shifted during President Obama’s push for the ACA, which sparked much debate.
By 2009, public opinion was divided, and between 2012 and 2014, many expressed the belief that providing healthcare was not the government’s responsibility.
Opinions shifted once again in the later years of Obama’s presidency, with a growing number of Americans viewing healthcare access as a governmental responsibility.
This view has continued in recent years and can be supported by the declining satisfaction with the overall quality of healthcare in the U.S.
Currently, 44% of Americans rate healthcare quality as excellent or good, a decrease from previous years when positive ratings ranged as high as 62%. This decline is notable among Republicans and Republican-leaning independents, with 42% now rating healthcare quality positively, down from 65% to 68% during the Trump administration.
Support for government involvement in healthcare has increased among independents and Republicans.
While 32% of Republicans agree the government should provide healthcare for all, this is an increase from 22% in 2020. Among independents, 65% now support government responsibility for healthcare, up six percentage points from 2020.
As for Democrats, they have consistently shown strong support for government involvement, with the current figure at 90%, the highest Gallup has ever recorded.
The survey also observed public opinion on the structure of the U.S. healthcare system.
Data shows Americans are divided, with 46% favoring a government-ran system similar to those in Canada or the United Kingdom, and 49% supporting a system based on private insurance.
In the past, support for private insurance systems has been higher, with most favoring this approach.
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Redesigning Integrated Care For Dually Eligible People With Intellectual/Developmental Disabilities
By Alixandra Gould, Stephanie Anthony, Edo Banach, Jonah Frohlich, Dennis Heaphy, and Anna Lansky
Health Affairs, December 23, 2024
More than one in 10 individuals who are dually eligible for Medicare and Medicaid have an intellectual disability or a related condition, such as a developmental disability, and up to half of all individuals served by state intellectual and developmental disabilities (I/DD) systems are dually eligible. Despite this, the design, implementation, and evaluation of models of care that integrate comprehensive Medicare and Medicaid services for dual eligibles rarely consider the particular needs of people with I/DD, or common challenges they face in addressing those needs.
Instead, most states have taken a one-size-fits-all (or one-size-fits-most) approach to designing integrated care models for their dually eligible populations. This lack of inclusive policy making and program design suggests that existing integrated care models are not meeting the needs of people with I/DD who enroll in those programs, as many advocates in the I/DD community have argued. In fact, a 2022 Health Affairs article on integrating care for dual eligibles with I/DD noted that most state Medicaid agency contracts “lack mention of individuals with I/DD altogether as a subpopulation, instead focusing on older adults and individuals with physical disabilities.”
Integrated Care Models Have Not Considered The Needs Of People With I/DD
A core goal of integrated care is to bridge the service continuums and align performance incentives of Medicare and Medicaid programs. Most integrated care models do this through varying levels of coordination, or by bringing all services under a single entity, or some combination of both. For dual eligibles with I/DD, Medicare and Medicaid fund these individuals’ physical and behavioral health services, but those individuals often rely on a third system for a broad range of disability-related and social support services. These I/DD systems are primarily Medicaid-funded but have specialized vendor and provider networks for I/DD-related services and supports as well as have deep expertise in person-centered service coordination and support navigation for I/DD populations. However, integrated care models for dual eligibles with I/DD have not focused on aligning physical health, behavioral health, and I/DD services across these systems to meet the needs of the individuals those models are meant to serve.
Individuals with I/DD are a heterogeneous group with widely varying physical and behavioral health and long-term services and supports (LTSS) needs, and they face increased barriers to accessing the services they need compared to the general population. Provider availability is significantly limited due to a lack of provider awareness and training about disability, as well as insufficient provider rates. There are also financial barriers (people with I/DD are more likely to live below the poverty line), social barriers stemming from misconceptions about disability, and access barriers related to mobility challenges and a lack of disability-related accommodations. The true nature and impact of these barriers is unknown because there is both a dearth of research about the health care needs of people with I/DD and a lack of data analyses focusing on people with I/DD who are dually eligible and the impact that has on their health outcomes. What we do know is that barriers exist and are far-reaching, and that integrated care models available today do not address them.
Redefining And Redesigning Integrated Care For Dual Eligibles With I/DD
A one-size-fits-all model of integrated care for dual eligibles with I/DD would not work. States take varying approaches to how they deliver Medicaid services to their members, including dual eligibles (for example, fee-for-service versus managed care systems); how they coordinate service delivery across their Medicaid-funded systems; and how they align and integrate Medicare and Medicaid services for dual eligibles.
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Caregiver Tax Credit Could Pass in 2025 With Trump, GOP Support
By Tony Pugh, Bloomberg News, December 24, 2024
- Tax credit would give financial relief to family caregivers
- Bipartisan legislation in Congress has languished for 8 years
Advocates for the elderly and people with disabilities are hopeful that, after eight years, Congress may finally pass bipartisan legislation to provide a tax credit for family caregivers in 2025.
Support for the policy was included in the 2024 Republican Party Platform, and President-elect Donald Trump has endorsed it, as well.
It was “one of the few caregiver-specific policies that he talked about on the campaign trail,” said Jason Resendez, CEO of the National Alliance for Caregiving. “So while it’s proved difficult to move to date, I think we’re going to see increased momentum going into the next Congress.”
By helping loved ones with daily activities like eating, bathing and getting dressed, family caregivers provide about $600 billion in unpaid labor each year, AARP estimates. Their efforts allow struggling family members to remain at home, which helps avoid costly institutional care often subsidized by taxpayers.
Care-Giving Costs
But nearly four out of five family caregivers incur about $7,200 a year in care-related expenses, the AARP estimates. That can create financial problems that cause them to cut personal spending or borrow from their retirement savings. Caregivers with jobs may have to cut their hours, forgo promotions, or leave the workforce altogether to care for loved ones.
In 2016, a bipartisan group of lawmakers introduced the Credit for Caring Act that aimed to provide a nonrefundable tax credit for family caregivers. But as party warfare increased over the Affordable Care Act, two Trump impeachment hearings, and Covid-19, the legislation stalled for years.
“Family caregivers were not front and center a few years ago,” said Nancy LeaMond, AARP’s chief advocacy and engagement officer. “We think now there is a general recognition that the 48 million family caregivers who suit up every day to provide support for loved ones are the newest, and the biggest, and the most underappreciated provider group in the health-care industry.”
Reintroduced in the House in January by Reps. Linda Sanchez (D-Calif.) and Mike Carey (R-Ohio), the Credit for Caring Act (HR 7165) provides a nonrefundable tax credit of up to $5,000 to cover 30% of qualified long-term care expenses that exceed $2,000 in a taxable year. Eligible caregivers must have income greater than $7,500, and care expenses for a spouse or dependent relative with long-term care needs.
The income requirement will keep some low-income families from qualifying for the tax credit even though they incur out-of-pocket costs and are more likely to go into debt, to stop paying bills and to stop saving in order to provide care, Resendez said.
The Senate version (S. 3702) was reintroduced by Sens. Shelley Moore Capito (R-W.Va.), and Michael Bennet (D-Colo.). Both Sanchez and Bennet introduced the original legislation in 2016.
In July, the Republican Party Platform said the GOP would “support unpaid Family Caregivers through Tax Credits and reduced red tape.” And Trump supported the policy at an October rally in New York City.
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Three trends that worry disability advocates as they look ahead to 2025
Increasing use of AI, potential Medicaid cuts, and anti-mask attitudes worry disabled Americans
By Timmy Broderick, STAT, December 27, 2024
Brace yourself, people with disabilities. 2025 could be a wild one.
Donald Trump’s second term in office is shaping up to be even more consequential than the former president’s first term. Longtime vaccine critic Robert F. Kennedy Jr., — who popularized the debunked claim that vaccines cause autism — is poised to lead the U.S. Department of Health and Human Services. Republicans want to slash Medicaid, the main vehicle for people with disabilities to receive long-term care. Reducing the federal dollars flowing into state coffers will force health officials and politicians to make tough decisions regarding their residents’ health care.
Meanwhile, artificial intelligence is transforming health systems, from research to payroll to making referrals. While researchers have detailed how AI impacts marginalized communities by perpetuating historic health disparities, not enough attention has been paid to how these technologies could affect people with disabilities.
The combination of AI making deeper inroads into health care, and the looming cuts to Medicaid, has experts worried.
“We’re really talking about an existential threat to a lot of progress that people with disabilities have made over the last several decades,” said Jennifer Lav, senior attorney at the advocacy group National Health Law Program.
States automating health benefits
While Medicaid is on the chopping block, it’s not clear yet how Republicans are planning to pare back the federal health program. It could be through work requirements, block grants, or other mechanisms, but the cuts will likely alter states’ calculus for who receives care. As states look for help making healthcare decisions, that could usher in the use of more algorithms to complete tasks like calculating benefits or detecting fraudulent claims.
More states are using these algorithms, sometimes with harmful results. Earlier this year, KFF Health News published a report detailing how Deloitte’s Medicaid enrollment systems — active in nine states — had made numerous errors, including disenrolling eligible individuals in many states. In 2016, Arkansas switched its algorithm for home and community-based services and left Arkansans lying in their own waste. The new algorithm had mistakenly cut care hours for people with diabetes or cerebral palsy, among others.
Experts worry that the advent of generative AI will only exacerbate these problems. Federal oversight remains nascent, and a person’s health or disability status affect their life in unsuspecting ways, such as determining housing for abused children. It is unclear how policy changes during the Trump administration will influence this issue.
“There is a major threat to disabled people’s ability to lead independent and safe lives, and automation is a tool for these cuts. Budget cuts may further push states towards privatizing essential government functions, which erodes accountability to the public,” said Emma Weil, a policy analyst at Upturn, a technology research and advocacy nonprofit.
Threats to community care
Community care is essential for many Medicaid enrollees. For most of the 20th century, disabled activists fought for the right to receive care in their community rather than at an institution. They were fed up with substandard living conditions and awful treatment options when institutional care was the norm. In recent decades, more and more people with disabilities have received care in their homes. However, this care is primed for cuts: long-term services and support account for 30% of the $600 billion spent on Medicaid.
The home care industry has been on life support for years. Direct care workers — providing hours of care to people with complex support needs — are often paid less than a McDonald’s cashier. Biden tried to give the industry a shot in the arm in 2021, but Congress failed to push through a $400 billion bill that would have overhauled home care.
In October, Trump suggested he would pass a tax credit for caregivers, potentially alleviating some of the burden. However, his proposed immigration crackdown would further decimate the industry, as immigrants comprise much of the direct care workforce.
The need for community care will only grow as the country’s population ages. If Medicaid cuts are as steep as Republicans suggest, states might be left with the unenviable position of having to decide, in a room full of people who need care, which vulnerable population they will no longer support.
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Washington - What we know about the proposal to close Yakima Valley School
By Questen Inghram, Yakima Herald-Republic, December 23, 2024
Selah's Yakima Valley School, a state-run residential care facility for people with intellectual and developmental disabilities, is facing a potential shutdown due to budget constraints and a transition to smaller, community-based facilities.
Gov. Jay Inslee's proposed budget for the 2025-27 biennium includes new taxes and cuts to services, including shutting down Yakima Valley School and the similar Rainier School in Buckley by 2027, to fight a potential $13 billion deficit.
Yakima Valley School was created in 1978 on the former grounds of the Central Washington Tuberculosis Hospital. It is run by the Washington State Department of Social and Health Services.
Cynthia Shipley, a spokesperson for DSHS, said in an email that the school has a staff of 260 and has 37 long-term residents. Its budget for 2025 is $29.3 million, Shipley said. The center also provides respite care and crisis stabilization beds.
"Individuals with intellectual and developmental disabilities have the right to personal choice in choosing a residential setting," the budget proposal states, adding the state has increased funding for other options to promote greater community inclusion and integration.
Other options
The cut is a part of the state's transition away from larger institutional care facilities and toward adult group homes and state operated living alternatives, or SOLAs.
"We believe we will be able to provide great care for folks in alternate settings," Inslee said. "This is not something that would happen overnight. We would have a transition period while planning takes place to get everyone comfortable with other options."
There is one SOLA program in Yakima with a capacity of 30, Shipley said. It currently has 29 residents.
Tom Gaulke, CEO of Entrust Community Services, a nonprofit that provides employment services and other resources to people with disabilities in Central Washington, said the Yakima Valley School has been in this position many times before.
Gaulke said the final budget is likely to be very different than the governor's proposal. He said that moving away from facility-based care to community-based care is in line with the prevailing philosophies of caring for those with intellectual and developmental disabilities — "that they should have the ability and choice to live in the community near their non-disabled neighbors."
Other services
Yakima Valley School does not just house and provide care for lifelong residents, he said. The facility also provides important physical therapy, dental, psychiatric and other care for patients, he said.
Yakima Valley School also serves as a respite center, taking care of a person with a disability while their caregiving families need to travel.
"That is so important to those families. Without those beds, there's not many other places for them to go," he said.
The Yakima Valley School has eight beds for its respite center and another eight for crisis stabilization care, Shipley said. On Wednesday, six people were in respite care and seven in crisis care.
Reaction
The Legislature will work on the budget for several months in a session that begins in January.
State Sen. Nikki Torres, R-Pasco, told the Yakima Herald-Republic that she would like to see funding to keep the facility open. She said she was worried that some residents may have to be moved farther away from their families to remain in facility-based care.
"I want to know a really good reason for removing funding for this program when there are others with a lot less benefits," she said.
State Sen. Curtis King, R-Yakima, said he was disturbed by the proposal to shut down YVS and said he has already received calls to his office about the issue.
Some of the residents have been living in the facilities their whole lives, and need constant care and attention, he said.
"To assume that they are going to get the same level of care, that to me feels like an impossibility," King said.
The facility and the state came to an agreement to no longer accept new residents many years ago, which is why the number of patients is so low, King said. He'd like to see the facility open up for new patients.
He said a few groups are pushing for the move away from state-run residential care facilities to smaller living alternatives.
"I'm not sure that these facilities can provide the same level of care," King said. "Closing a residential care facility is not the answer."
Rainier School in Buckley
Inslee's budget also eliminates another residential care facility, Rainier School in Buckley. It opened in 1939 and reached a peak population of over 1,900 residents in 1958, according to the DSHS website.
It currently has 74 intermediate care facility clients and nine transitional care facility clients, Shipley said. It has a staff of 443 employees and a budget of $57 million.
There is no SOLA program in Buckley, Shipley said.
The part of the facility that offered independent living skills training for residents closed in 2023 as part of a settlement with the Health Care Authority, according to the DSHS.
If the Yakima Valley School and Rainier School close, two state-run residential care facilities would remain: Fircrest School in Shoreline and Lakeland Village in Medical Lake.
Fircrest School is planning to have additional capacity in 2027, and could accept current residents of Yakima Valley School and Rainier School, according to the governor's proposal.
Read the full article here
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Caregivers of Georgians with disabilities finally realizing long-awaited pay hike
By Jill Nolin, The Georgia Recorder, December 23, 2024
Workers who assist Georgians with disabilities are starting to see a long-awaited pay-bump, giving providers hope that they can finally compete again with the fast-food and retail jobs that have been eroding their workforce and hamstringing their capacity to function.
The pay increase is the result of a wage study two years ago that led to a recommended $6-per-hour increase for workers called direct support professionals. Previously, they were on average making $10.63 an hour at a time when fast-food chains and big box retailers were offering higher pay.
That lagging wage has contributed to a workforce crisis that providers say intensified after the pandemic, causing providers to close facilities and scale back services. That workforce shortage continues today, often leaving people with disabilities and their loved ones scrambling to find caregivers.
That’s why increasing the wage for these workers has been a priority issue for advocates who are often at the state Capitol pushing for more funding for Medicaid services meant to keep people with disabilities out of an institutional setting, often referred to as a waiver service.
But getting the funds to service providers is slow-going. This year, the governor and state lawmakers set aside the funding for the $107 million pay increase, and the federal government approved the rate increase on July 1, kicking off a monthslong implementation process that is still ongoing.
Providers were able to start using the higher rate in mid-October.
Ryan Whitmire, who is the president of the state’s provider association, said he hopes the increase will help turn around the industry’s workforce woes.
“What the governor and the General Assembly did last session was historic in the sense that they truly made an investment to get things back in balance that had been out of balance for over a decade,” Whitmire said.
“And that leap forward was really just to get it back in balance, to have direct support staff be able to compete with the fast-food industry. That’s not where we want to end, but we were so far out of balance that we couldn’t even compete with fast food,” he said.
Whitmire said each provider is handling the pay increase differently, including the timing. But his organization, Developmental Disabilities Ministries, was able to start paying the higher rate last month and plans to give workers a special Christmas bonus and an “end of year blessings bonus.”
The bonuses are possible because the organization has received almost half of the back pay owed to them.
“We really appreciate our employees that have really hung on and stayed at a job that they could have gone anywhere else and been paid more money, but they’re doing it because they love the people that they serve,” Whitmire said.
“They’re not just doing it for a paycheck, but it’s going to greatly help, I believe, recruit new staff, as well as to pay people not what they’re worth because I think they actually deserve to be paid more than the average of $16.70. But it is a giant leap forward from where we were,” he said.
Read the full article here
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Montana - Enhanced penalties: Business advocating for bill revision following homicide at Billings group home
By Hailey Monaco, KQTV News, Decemberf 23, 2024
Incoming Billings state Sen. Mike Yakawich is aiming to push forward an amendment to a law in the upcoming 69th Montana Legislative Session for enhanced penalties for caregivers who deliberately victimize the vulnerable population.
Currently, there are no additional legal consequences for caregivers if they harm or steal from the ones in their care, aside from those imposed on the general public.
"The bill that we're intending to bring forward here is to enhance the penalty for someone who hurts or injures someone who is under a paid caregiver. So these are terms that we'll be building up for this bill. We're not creating a whole new law. It's just an enhancement," Yakawich said on Monday. "We're trying to address 1% of the working population. Ninety-nine percent of the working population are awesome, do a great job working with those who are most vulnerable."
This stems from a homicide that happened in February of this year at a Residential Support Services (RSS) group home in the Heights. The dozen group homes in Billings run by RSS care for adults with intellectual and developmental disabilities. The man who was killed was 37 years old, but he had the cognitive function of a two- or three-year-old, was blind, non-verbal and weighed 108 pounds.
According to court documents, the defendant, Dante Anthoney Garriott, 19 at the time, grew frustrated with the resident, identified only as "A." in court records, when he was trying to walk him back to his room. The man kept falling, and Garriot confessed to kicking the man on the side of his body. Garriot then punched him in the body and once in the face with a closed fist. The man died nearly 2 weeks later.
Garriot faces deliberate homicide charges and his trial date is set for Feb. 24, 2025 in Yellowstone County District Court.
The proposed bill would not apply to acts of negligence, but deliberate intent.
“There should be a higher standard," said Calvin Calton, the Executive Director of RSS. "I think when you're paid, when you take a position and draw a paycheck, and care for somebody, you need to take it seriously."
Read the full article here
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Oklahomans With Disabilities Receiving State Services After DHS Waitlist Time Reduced To 2 Years
By Alexis Young, News 9, December 26, 2024
Oklahoma families on the waitlist for state services for their loved ones with disabilities are receiving good news after the Department of Human Services (DHS) cut waitlist times from 13 years to two years.
The DHS Developmental Disabilities Services (DDS) said more than 2,000 families are now approved or receiving services since new funding became available.
This drastic change is thanks to the state lawmakers giving DHS the funding it needed, and now, it is a game changer for anyone living with a disability and needing assistance.
DDS said it serves anyone ages three and older living with an intellectual disability, including in-home support, waivers for special facilities, guardianship services, and more.
Some families, such as the Weeder family in Stillwater, said they were waiting for nearly a decade to get approved, but now, DDS says the process to apply is easier.
"We've waited for so long," Mike Weeder, the father of disabled adults said. "We love them so much and we just wanted to get this help, and it was finally happening."
The Weeder family says thanks to the new funding, they are now able to connect their son with a life center four days a week, while their daughter is now in a transition program at Stillwater High School.
DHS said the state legislature is now appropriating $3 million to people who applied from May 2, 2022, to Oct. 31, 2024.
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New York - Federal Approval Granted for NY State Tax on Managed Care Organizations to Amplify Medicaid Funds
By Luis Lombardi, Hoodline, December 25, 2024
In a significant move that may bolster New York's Medicaid funds, federal authorities have approved a tax on Managed Care Organizations (MCOs) in the state. This approval, announced on Monday, is a strategy expected to unlock potentially billions for New York's state budget — particularly in regard to Medicaid reimbursements. Ken Raske, president and CEO of the Greater New York Hospital Association, expressed his optimism in a released and subsequently removed memo, stating, "This critical development provides a pathway to addressing our dual goals of eliminating health care disparities in vulnerable communities and addressing Medicaid underpayments to hospitals and other providers."
According to reports by Crain's New York, the tax on MCOs could generate between $1.4 billion and $1.8 billion annually, although initial estimates suggested it could reach up to $4 billion. However, as New York prepares for a political shift with President-elect Donald Trump's incoming administration, the question of whether this decision will stand remains.
This development follows California's similar move in April 2023, which is expected to generate $20.9 billion by its expiration at the end of 2026. While the approval is seen as a significant step for New York under Governor Hochul’s administration, stakeholders, particularly in the business and commercial health insurance sectors, have raised concerns. Over the summer, they lobbied against the new tax, citing potential rate increases that could affect both employers and employees. The specific timeline for the implementation of the New York tax and the new rates for health insurers have yet to be clarified, contributing to uncertainty as a presidential transition approaches.
Read the full article here
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Indiana Medicaid director to step down in early 2025
By Abigail Ruhman, IBP News, December 20, 2024
Indiana’s Medicaid director will resign in early 2025. The Family and Social Services Administration announced Friday Cora Steinmetz will step down after less than two years in the role.
Steinmetz was named Indiana’s Medicaid director in 2023 after working in a number of other senior operations roles in Gov. Eric Holcomb’s administration.
She was in charge of Indiana's response to the $1 billion Medicaid forecasting error presented last year to the State Budget Committee.
That response included a number of strategies, including changes to how the Medicaid forecast is prepared, increasing transparency measures and addressing the growth in the utilization of home- and community-based services.
Many of the “cost-containment” strategies focused on home- and community-based services housed under certain Medicaid waivers, including the current Health and Wellness and Pathways waivers.
Many of the changes implemented as a part of the response received criticism from lawmakers, advocates and people impacted by the strategies.
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We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.
If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at
info@vor.net
with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.
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[Please click on blue link to view information about the bill]
VOR SUPPORTS:
H.R.10427 - To require the Secretary of Labor to withdraw a proposed rule relating to certificates issued under section 14(c) of the Fair Labor Standards Act
H.R.7213 - Autism CARES Act of 2024 - This bill reauthorizes several programs that support autism education, research, and resources.
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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