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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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Registration is Open!
VOR's 2026 Legislative Initiative
June 8 - 10
Washington D.C.
We are proud to announce that we will be returning to Capitol Hill this June.
We have a limited number of hotel rooms avaialable, at the ridiculously low price of $178 per night for a single room, $269 per night for a double.
Please register for the initiative now to reserve your rooms.
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This is a critical year for our families.
Last year, Congress passed legislation that cut Medicaid by nearly
One Trillion Dollars.
They ignored our pleas for better wages and benefits for DSPs.
Their actions have cut the DSP workforce dramatically.
They have cut Special Education programs for people with I/DD and autism.
They have acted like we do not exist.
This year, we have to show up, stand up, and speak up.
We are the voice of our loved ones who cannot speak for themselves.
| | A Little Help From Our Friends: | |
New Cost Comparison Study
for
High-Acuity Individuals in Massachusetts
Our friends in Massachusetts have created a new cost comparison study showing that the cost of care in an ICF is less expensive and offers better care than HCBS waiver settings for high-needs individuals with I/DD and autism.
The Saving Wrentham and Hogan Association, an advocacy group working to renew admissions to Massachusetts' two remaining state-operated ICFs, has released an extensive report providing a detailed, data‑driven look at what it actually costs to support individuals with the most complex medical and behavioral needs, and it exposes the gap between those real costs and the assumptions driving current HCBS policy.
Although the analysis focuses on Massachusetts, the underlying issues are national: states are underestimating the resources required for high‑acuity care, and individuals with the most significant needs are the ones most at risk when systems are stretched too thin.
Please click here to download the cost comparison
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And here is a link to their most recent blog post:
Families Rarely Hear About ICF/IID Care in Massachusetts
For many families navigating the disability service system, the landscape can feel confusing, fragmented, and full of hidden assumptions. Families rarely hear about ICF/IID care. One of the most common questions we hear is, “Why didn’t anyone tell me about all the options, including ICF/IID care?”
Read the blog here
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Medicaid and Upcoming State Budget Debates
By Akash Pillai, Elizabeth Williams, and Robin Rudowitz, KFF, January 23, 2026
As states begin budget debates for state fiscal year (FY) 2027, many states are facing a more tenuous fiscal climate. Slowing revenue growth and heightened spending demands coupled with anticipated federal Medicaid cuts under the 2025 reconciliation law, changes to the Affordable Care Act (ACA) enhanced Marketplace subsidies, and economic changes are contributing to tighter budget conditions and fiscal uncertainty for states. Medicaid is often central to state fiscal decisions as it is simultaneously a significant spending item as well as the largest source of federal revenues for states.
States projected Medicaid enrollment to remain flat for FY 2026 in KFF’s 2025 budget survey of Medicaid officials and total Medicaid spending was expected to increase 7.9%, though there was substantial variation across states. States reported a variety of cost pressures including provider and managed care rate increases, greater enrollee health care needs, and increasing costs for long-term care, pharmacy benefits, and behavioral health services. Some states have already implemented Medicaid spending cuts to address recent budget challenges, and others may follow as they contend with budget gaps and prepare for the implementation of the Medicaid changes in the 2025 reconciliation law.
Now in January 2026, halfway through FY 2026, governors are beginning to release proposed budgets for state legislatures to consider for FY 2027. Most states will be adopting FY 2027 budgets this year and another 16 states enacted biennial budgets last year, though some of these states may adopt a supplemental budget for FY 2027. The state budget cycle in most states runs from July to June, and governors typically release their budget proposals early in the calendar year followed by a convening of the legislature to finalize and enact a budget. While most states have not yet released budget proposals, implementation of the 2025 reconciliation law will put pressure on state Medicaid programs and states such as Colorado and Idaho have already announced Medicaid cuts. Medicaid issues are also likely to intersect with broader health care coverage and affordability debates leading up to the mid-term elections in November 2026. There will be 39 gubernatorial elections (18 incumbent governors running for reelection and 21 incumbent governors who are either term-limited or not seeking reelection) and control of state legislative bodies could also be affected. This brief describes current state fiscal conditions as states begin FY 2027 budget debates and highlights key areas to watch for Medicaid policy changes as states respond to fiscal challenges and the 2025 reconciliation law.
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Medicaid: What to Watch in 2026
By Robin Rudowitz, Alice Burns, Elizabeth Hinton, Jennifer Tolbert, and Elizabeth Williams, KFF. January 23, 2026
At the start of 2026, many issues are at play that could affect Medicaid coverage, financing, and access to care. Medicaid, which is administered by states within broad federal rules, provides comprehensive health and long-term care coverage to one in five low-income Americans. A more tenuous fiscal climate in 2026 coupled with implementation of the 2025 reconciliation law will put pressure on state Medicaid programs. While major legislative changes to Medicaid at the federal level are unlikely in 2026, key areas to watch include federal policy actions such as new regulations or guidance related to work requirements, implementation guidance for other components of the 2025 reconciliation law, and states’ policy actions in response to federal policy changes and state budget pressures.
Medicaid Financing
Cuts to federal Medicaid spending will exacerbate the fiscal challenges states are experiencing because of slowing revenue growth and increasing spending demands. The 2025 reconciliation law made historic cuts to federal Medicaid financing, which are estimated to reduce federal Medicaid spending by $911 billion over 10 years. Although the most significant changes to federal Medicaid financing don’t take effect until October 2027 or later, some states will experience more immediate effects resulting from changes to federal requirements governing provider taxes. One of the most immediate effects is that states are prohibited from establishing any new provider taxes or increasing existing taxes. Historically, states have used provider taxes as a means of sustaining Medicaid funding in times of slowing revenue growth or increasing spending demands, but that tool is no longer available because of the new prohibition.
Medicaid Access to Care
State decisions to restrict provider reimbursement rates or benefits in response to federal Medicaid spending cuts could limit access to care for some Medicaid enrollees in 2026. Changes to Medicaid financing will make it difficult for states to increase payment rates to providers and may create pressure for states to restrict payment rates. Reduced or stagnant payment rates to providers coupled with rising costs and increases in the number of people who are uninsured (from Medicaid and Marketplace coverage changes) could pressure providers to reduce staff, services or potentially close. Some providers already struggling financially, such as rural hospitals or hospitals serving a high share of Medicaid enrollees, could face more challenges. An influx of funding from the Rural Health Transformation Program may help to mitigate some challenges in the near term, but those funds are temporary and not expected offset the full magnitude of Medicaid funding cuts over the next ten years.
Restricting Medicaid coverage of “optional” services (like behavioral health or home care) could result in less access to care for people with complex health conditions. This may be particularly likely for home care services, where existing tools for managing spending such as caps on total spending or enrollment make it easier for states to limit spending in the future.
The administration may shape Medicaid access through actions to curtail or approve new Section 1115 Medicaid demonstration waivers. Such waivers allow states an avenue to test new approaches in Medicaid if the Department of Health and Human Services (HHS) Secretary determines the waiver is likely to “promote the objectives of the Medicaid program.” Waiver priorities may shift from one presidential administration to another. For example, the Trump administration has rescinded Biden-era 1115 waiver guidance on covering health-related social needs (HRSN) services, indicated plans to phase out certain waiver financing tools (related to use of “Designated State Health Programs” (DSHP), notified states that it does not anticipate approving or extending waivers with continuous eligibility provisions for children and adults or workforce initiatives. While the Trump administration has indicated the phase out or rescission of certain Biden-era waiver policies, the administration has not provided details about its priorities for the use of 1115 waivers. The 2025 reconciliation law included a new provision that requires the Chief Actuary at CMS to certify that 1115 waivers are not expected to result in an increase in federal expenditures compared to federal expenditures without the waiver. While “budget-neutrality” for waivers has been required under long-standing policy and practice, typically the calculations are determined on a per enrollee basis over the course of the waiver and are negotiated between states and the administration.
Workforce challenges tied to reimbursement rate policies and changes in immigration policy could also exacerbate access challenges. KFF survey data finds that 13% of immigrants have avoided going to work since January 2025 because of concerns about drawing attention to someone’s immigration status, a number which rises to 40% among people who are likely to be undocumented immigrants. Such concerns are most significant for the long-term care workforce because Medicaid is the dominant payer for care and more than one in four long-term care workers are immigrants. Beyond long-term care, immigrants constitute a large share of workers in other health care fields, including over one in four physicians in US hospitals.
Read the full article here
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Our Darwinian Approach to Health Care Costs
Dr. Drew Altman - Beyond the Data, KFF, January, 2026
President Trump is now railing about insurance company premiums.The Ways and Means Committee and Energy and Commerce Health Subcommittee in the House just held hearings putting insurance company executives on the hot seat and examining a broad range of health cost issues. Politically, it’s an effort to shift accountability for affordability worries from Republicans to tried-and-true villains (insurance companies and drug companies), and blunt Democratic attacks to come in the midterms on affordability issues. It also helps to put health care costs back in the spotlight. What it doesn’t really do is put the costs that matter most in focus: spending for hospitals and doctors, which together represent 52% of the health care bill. With the exception of the occasional piece of legislation affecting them, such as site neutral payment for some hospital services, they have mostly been basking on the sidelines while drug companies (retail drugs are 9% of spending), and now insurance companies, take it on the chin.
The other thing Congress has been doing aggressively is reducing federal health spending through cuts in Medicaid and the ACA tax credits, shifting cost burdens to states and to consumers. It underscores how reducing health care costs has become a Darwinian game; everyone wants to reduce health care costs and spending—their own, often at the expense of someone else.
It’s like a Venn diagram with spending problems that only somewhat overlap and more often conflict.
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Here is a brief review of the multiple spending problems in play and the tradeoffs in addressing them.
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Kennedy Overhauls Federal Autism Panel in His Own Image
By Azeen Ghorayshi, The New York Times, January 29, 2026
Health Secretary Robert F. Kennedy Jr. has overhauled a panel that helps the federal government set priorities for autism research and social services, installing several members who have said that vaccines can cause autism despite decades of research that has failed to establish such a link.
The panel, the Interagency Autism Coordinating Committee, was established in 2000 and has historically included autistic people, parents, scientists and clinicians, as well as federal employees, who hold public meetings to debate how federal funds should best be allocated to support people with autism.
The 21 new public members selected by Mr. Kennedy include many outspoken activists, among them a former employee of a super PAC that supported Mr. Kennedy’s presidential campaign, a doctor who has been sued over dangerous heavy metal treatments for a young child with autism, a political economist who has testified against vaccines before a congressional committee, and parents who have spoken publicly about their belief that their children’s autism was caused by vaccines.
The group, which also includes 21 government members across many federal agencies, will advise the federal government on how to prioritize the $2 billion allocated by Congress toward autism research and services over the next five years.
Though it’s not yet clear what the committee will do — or what it can do, given that it serves only an advisory function — many longtime autism advocates and researchers said they were alarmed by the fact that the committee seemed stacked to advance Mr. Kennedy’s priorities on vaccines.
“The new committee does not represent the autism community,” said Alison Singer, who served on the committee from 2007 to 2019. Ms. Singer, whose 28-year-old daughter has profound autism, is the head of the Autism Science Foundation. “It disproportionately, excruciatingly so, represents an extremely small subset of families who believe vaccines cause autism.”
Continued
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Related article
RFK Jr. Names 21 New Members to Federal Autism Committee
By Kristina Flore, MedPage Today, January 28, 2026
HHS Secretary Robert F. Kennedy Jr. has appointed 21 new members to the Interagency Autism Coordinating Committee (IACC), many of whom have a history of criticizing vaccines.
IACC is a federal advisory committee that coordinates federal efforts and advises the HHS secretary on issues related to autism spectrum disorder, according to its website, which states that it "helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum."
The committee launched about two decades ago, after the Combating Autism Act passed in 2006. Its charter requires at least three members who have been diagnosed with autism; three who are parents or guardians of someone with autism spectrum disorder; and a minimum of three members who represent autism research and advocacy organizations.
Many of the new members have stated they believe vaccines caused their children's autism, others have made critical comments about vaccines. [One appointee] alleged in a written statement to a Senate committee that there was a link between vaccines and autism, claiming two studies indicated that the birth dose of the hepatitis B vaccine "significantly increases" autism risk.
The move isn't unlike Kennedy's attempts to upend the CDC's Advisory Committee on Immunization Practices (ACIP), as he last year ousted all 17 members, ultimately replacing them with individuals more sympathetic to his own views.
Experts in autism science have raised concerns about the new group and its potential impact on autism research and policy.
David S. Mandell, ScD, of the department of psychiatry at the University of Pennsylvania Perelman School of Medicine, told MedPage Today that the "bulk of the recently appointed members appear to be people who adhere to untested, disproven, and sometimes dangerous ideas about what causes autism and the best ways to care for autistic people."
"The group appears stacked to give Secretary Kennedy political cover to continue his assault on life-saving vaccines and to promote unproven treatments," Mandell continued. "My hope is that, as IACCs have done in the past, they will focus on the need to increase funding and expand care within the many public systems that serve the overwhelming majority of autistic people, including special education, Medicaid-funded services, and vocational and rehabilitation services."
Read the full article here
Read the Bio's of the appointees from the HHS website here
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The ‘R-Word’ Returns, Dismaying Those Who Fought to Oust It
By Dan Barry and Sonia A. Rao, The New York Times, January 26, 2026
Late last month, a woman posted a photograph on social media of a purple hat she had knitted, while a black-and-white dog lounged on the carpet a few feet away. The cozy scene was accompanied by a single sentence: “This hat is an hour behind schedule thanks to influencer retards.”
The proud knitter, Harmeet K. Dhillon, is also the assistant attorney general overseeing the Justice Department’s Civil Rights Division. Her purview includes protecting the rights of people with intellectual disabilities by ensuring compliance with the Americans With Disabilities Act.
For decades now, the “R-word” has been regarded as a slur against people with intellectual disabilities — a word to be avoided. Yet it has had a striking resurgence, in part because people in high-profile positions of power and influence have chosen to resurrect it, often with an air of defiance.
“The word ‘retarded’ is back,” the popular podcaster Joe Rogan declared in April, describing its return as “one of the great culture victories.” He did not respond to requests for elaboration, but there is abundant evidence to support his muscular declaration.
In the past three months, the musician Kid Rock donned a face mask while appearing on a program streaming on Fox Nation and said he was dressing up as a “retard” for Halloween. (He was also wearing a Jesus trucker cap.) The Fox News personality Greg Gutfeld coupled the word with a schoolyard taunt to mock mayors who oppose President Trump, and Elon Musk used it on his social media platform to insult a critic. The word has recently been uttered on the podcasts of the white nationalist Nick Fuentes and the right-wing commentators Derek Hunter, Steven Crowder and Tim Pool.
The word’s proliferation has alarmed many advocates and people with disabilities who thought it had long since been removed from circulation.
“The drumbeat and use of this word has been like nothing I’ve seen in a very long time,” said Katy Neas, the chief executive of the Arc of the United States, a disability rights organization. She called its use by the Justice Department’s civil rights chief “simply mind-blowing.”
The word’s return raises an obvious question: Why?
Why decide to resurrect a term well known to offend a community that has been historically marginalized, so much so that its usage prompted public-awareness campaigns and wholesale changes to nomenclature?
“I think there’s a perception of power, of ‘I am powerful, therefore I can use this language; I am powerful, and therefore I can diminish others,’” Ms. Neas said. She added: “It’s language used by bullies to bully.”
To Amy Hewitt, the director of the Institute on Community Integration at the University of Minnesota, the word’s return reflects a divisiveness defining the United States of 2026, in which a sizable part of the population believes that “many people are a drain on our society, on our progress, on what makes us great.” She pointed in particular to the Trump administration’s dismantling of diversity, equity and inclusion efforts.
“It’s not just about race and ethnicity, it’s also about disability,” she said. “This is why the R-word is completely acceptable to them. It’s ‘us versus them.’”
Read the full article here
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Nebraska - Pillen, DHHS alter developmental disabilities program proposal following public comment period
By Aaron Bonderson , Nebraska Public Media, January 27m 2026
A waiver program for people with developmental disabilities will be changing following public outcry earlier this month, according to the Nebraska Department of Health and Human Services and Gov. Jim Pillen.
The department had proposed to cap live-in caregiver services at 40 billable hours per week for those on the Aged and Disabled Waiver. That limit, and an additional 30-hour limit on other caregiver services, will be dropped under a new proposal, DHHS said in a news release Tuesday.
In the announcement, Gov. Pillen said, “I am truly appreciative of the Nebraskans who reached out to my office and participated in the public feedback process,” he said. “Based on my conversations with dedicated family members and AD Waiver recipients, I directed DHHS to take a second look at the proposal and make necessary changes to ensure Nebraska families continue receiving the support they need.”
The process of updating the AD Waiver provisions is a part of a routine five-year examination, Tony Green with DHHS told Nebraska Public Media News in mid-January. The department had been getting concerns from people saying limiting family caregiving could cost the state by directing people to understaffed agencies.
“We have received a significant number of comments that have indicated if we operationalize it as written, it would cost the state additional money,” Green said in mid-January, “and we are absolutely evaluating that and appreciate that feedback.”
Also included in the updated proposal, DHHS is changing the annual cost limit per waiver recipient to 150% of the average spending at nursing facilities. It was previously 175%. The new proposal drops the limit from nearly $162,000 to just under $139,000, but an “exception process will be available when services provided by out-of-home caregivers are necessary to protect the participant’s immediate health and safety,” the department said Tuesday.
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A plan to cut Medicaid rates for Coloradans with disabilities gets no support from governing board, moves ahead anyway
By Jennifer Brown, The Colorado Sun, January 26, 2026
When it came time for any of the Colorado Medical Services Board members to make a motion, there was only dead silence.
For two hours, the 11-member board that governs the state Medicaid program heard pleas from parents who provide round-the-clock care of their adult children with severe disabilities. And when the testimony was over, no one on the board would make a motion that would result in cuts to the parents’ monthly pay.
The request from Medicaid officials for an emergency rule change that means a 10% pay cut for families of Colorado’s most vulnerable people with disabilities effectively died when the board refused to bring it to a vote.
But about a week later, Medicaid officials posted a memo directing case managers to move ahead with the rule change anyway.
The at-odds actions have left families confused — first thrilled when the board seemed to take their side, then devastated and angry when the Colorado Department of Health Care Policy and Financing, which includes Medicaid, signaled it was moving forward with the rate change.
It’s the latest wound in a painful year for the state Medicaid program, which faces wide-ranging cuts in services that will affect thousands of Coloradans with disabilities.
Among the cuts resulting in the loudest protest is the rule change Medicaid officials brought to the Medical Services Board this month, which would move family caregivers into the same rate category as host homes that can care for up to three people at a time.
Family caregivers have accused Medicaid officials, who call the change an “alignment” instead of a rate cut, of circumventing the public comment and approval process normally followed for rate changes. Now, they say, they are ignoring the wishes of the Medical Services Board.
One mother, Nicole Villas, accused Medicaid officials of creating a “fictional emergency.”
“It’s not an alignment. It is a cut,” she said. “It has not been confusing. Family caregivers are not host homes.”
The families, who receive “long-term services and supports” from the Medicaid program, have given up working outside the home to instead provide 24/7 care for adults who in many cases need feeding tubes and tracheotomies, have multiple seizures each day and whose intellectual abilities are similar to those of toddlers. Depending on the severity of needs, they are paid from $30,000 to $100,000 per year to provide round-the-clock care for their adult children through the state-federal program.
Read the full article here
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Here's why New Jersey's first Disability Watchdog has hope despite scandals
By Gene Myers, The Daily Record, January 30, 2026
For eight years, Paul Aronsohn served as New Jersey’s first ombudsman for people with developmental disabilities. He built the office from scratch, took calls at all hours, drove thousands of miles to meet families in crisis and often found himself at odds with his colleagues in state government.
Now, with the end of Gov. Phil Murphy's administration, Aronsohn, a former Ridgewood mayor, is leaving a job that motivated him and kept him on his toes.
The work was “heartbreaking and infuriating, yes, but definitely the most meaningful work I’ve ever done,” Aronsohn, 59, said recently, days after his tenure came to an end.
New Jersey's disability ombudsman, a watchdog office designed to be a resource for families when disability services fail, has become a national model under Aronsohn's watch. U.S. Rep. Tom Kean Jr. has introduced a bill in Congress to create a federal version of the office.
Aronsohn came to the job with a tragic, personal view of how the system can leave people with disabilities behind. He also arrived with a long résumé in government that included stints with some of the most recognizable names in American politics. But the work that made him proudest wasn’t on the world stage; it took place in living rooms, in group homes and on the streets of New Jersey.
Read the full article here
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Please share this offer with your loved one's
Direct Support Professionals!
VOR ❤️s OUR
DIRECT SUPPORT PROFESSIONALS!
Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.
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.6137 / S.3211 - Rep.Brian Fitzpatrick (R-NJ) and Sen. Maggie Hassan (D-NH) - A bill to require the Office of Management and Budget to consider revising the Standard Occupational Classification system to establish a separate code for direct support professionals
H.R.4796 - Rep. Laura Friedman (D-CA) - Restoring Essential Healthcare Act -To amend Public Law 119-21 (The One Big Beautiful Bill Act) to repeal the prohibition on making payments under the Medicaid program to certain entities.
H.R.4807 - Rep Greg Landsman (D-OH) - Protect Our Hospitals Act - To amend Public Law 119-21 to repeal certain changes to provider taxes under the Medicaid program.
H.R.1262 & S.932 - Rep. Michael McCaul (R-TX) and Sen. Markwayne Mullin (R-OK) "Give Kids A Chance Act" - To amend the Federal Food, Drug, and Cosmetic Act with respect to molecularly targeted pediatric cancer investigations. This bill would renew research into pediatric cancers and includes increasing funding for rare diseases, some of which cause Intellual and developmental disabilities and autism.
H.R.1509 & S.752 - Rep. Lori Trahan (D-MA) & Sen. Chuck Grassley (R-IA)
Accelerating Kids' Access to Care Act -
This bill would amend titles XIX and XXI of the Social Security Act to streamline the enrollment process for eligible out-of-state providers under Medicaid and CHIP, and streamline enrollment under the Medicaid program of certain providers across State lines.
H.R.2598 & S.1277 - Rep Jared Huffman (D-CA) and Sen Chris Van Hollen (D-MD) The IDEA Full Funding Act
To amend part B of the Individuals with Disabilities Education Act to provide full Federal funding of such part.
S.2279 - Sen. Josh Hawley (R-MO)
A bill to repeal the changes to Medicaid State provider tax authority and State directed payments made by the One Big Beautiful Bill Act and provide increased funding for the rural health transformation program.
H.R.1950 - Rep. Mark Pocan (D-WI) - Protect Social Security and Medicare Act
To protect benefits provided under Social Security, Medicare, and any other program of benefits administered by the Social Security Administration or the Centers for Medicare and Medicaid Services.
S.779 & H.R.1735 - Sen. Alex Padilla (D-CA) & Rep. August Pfluger (R-TX)
To amend title XIX of the Public Health Service Act to provide for prevention and early intervention services under the Block Grants for Community Mental Health Services program
H.R.2491 & S.1227 - Rep Kat Cammack (R-FL) & Sen. Edward Markey (D-MA) - The ABC Act
To require the Administrator of the Centers for Medicare & Medicaid Services and the Commissioner of Social Security to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs
VOR OPPOSES:
H.R.2743 & S.1332 - Rep. Bobby Scott (D-VA) & Sen. Bernie Sanders (I-VT) Raise the Wage Act - A bill to provide increases to the Federal minimum wage and for other purposes. VOR opposes the provision in this bill that would phase out section 14(c) and sheltered workshops for indiviiduals with I/DD and autism.
S.2438 - Transformation to Competitive Employment Act (Sen. Chris Van Hollen (D-MD) - A bill to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support people with disabilities through competitive integrated employment, to phase out the use of such special certificates, and for other purposes.
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Elk Grove Village, IL 60007
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