November 23, 2024

VOR's Weekly News Update

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run by families of people with I/DD and autism

for families of people with I/DD and autism.

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VOR & You:

VOR's

Early Giving Tuesday

November 26, 2024


Once again, we are celebrating holiday traditions and the joys of giving with VOR's annual Early Giving Tuesday. We're asking our members to put a little something into our hat a bit early, the Tuesday before Thanksgiving, to make room in your budget for VOR before the frenzied spending of Black Friday, Small Business Saturday, Send-it-all-back Sunday, and Cyber Monday, also known as Order-all-new-stuff-online Day.


All kidding aside, we do rely on our members' generosity in order to continue our advocacy, and Tuesday, November 26th would be a fine day to make a donation.

If you prefer to wait until December 3, Regular-Giving-Tuesday, that would be okay, too.


Please click here to donate

Apologia:


This week's newsletter is being sent out a day late, due both to the volume of information about cabinet appointees and policies proposed by the incoming Trump Administration each day, and to a possible leak in the ceiling directly above my computer workstation. The ominous leak wa contained, thankfully, but nothing seems to stop the flood of information coming into my newsfeed about the incoming administration and the power shifts in Congress.


Though many of our members are already aware of these stories, or may have tired of them, we feel it's important to collect them and present them to those who do wish to dig deeper or to prepare for the challenges and opportunities that come with a change in the power structures of the major branches of the federal government.


For those who have read enough speculation on what may or may not happen in the months ahead, we suggest you scroll down to the state news for stories about some current events with major consequences for families, like ours, of people with intellectual and developmental disabilities and autism.


Thank you,

Hugo

The Uncertain Future of Medicaid Services for People with I/DD and Autism:

Trump taps Dr. Oz to head CMS   

By Kimberly Marselas and James M Berklan. McKnight's Long-term Care News, November 19, 2024


President-elect Donald Trump said Tuesday he will nominate TV personality and unsuccessful Senate candidate Mehmet Oz, MD, a cardiothoracic surgeon, as the next administrator of the Centers for Medicare & Medicaid Services.


Oz unsuccessfully ran for Senate in Pennsylvania as a Republican in 2022 and has been an outspoken supporter of Trump. He could serve under Robert F. Kennedy Jr., who was previously announced as Trump’s pick to head the Department of Health and Human Services. Both nominees must be confirmed by the Senate.


Read the full article here

Medicaid ‘At Risk’ Under Incoming Administration, According To CMS Leader

By Audrie Martin, Home Health Care News, November 20, 2024


The Medicaid program could face significant challenges under the Trump administration, according to Dan Tsai, the deputy administrator and director of the Center for Medicaid and Children’s Health Insurance Program (CHIP) Services. He expressed these concerns during a leadership update call from the Center for Medicare & Medicaid Services (CMS) on Wednesday.


“Medicaid is so important across the country,” Tsai said. “Over one in five Americans get their health care coverage through us. We are leaving the program stronger today than where we started four years ago, but that progress is at risk.”


Tsai specifically opposed the introduction of work requirements or block grants for the program, arguing that they would create excessive bureaucratic hurdles.


“They are just plain bad policy not backed up by facts and evidence. And the cost will be people’s lives and health across the country,” he said.


The Trump administration has indicated that these requirements and grants may be introduced during President Trump’s next term.


Continued

Disability Advocates Sound Alarm Over Possible Medicaid Cuts

By Michelle Diament, Disability Scoop, November 21, 2024


President-elect Donald Trump and his allies on Capitol Hill are reportedly looking to squeeze money from Medicaid and other safety-net programs as they hunt for ways to offset the cost of extending tax cuts that were passed during his first term in office.


The moves are setting off alarm bells for disability advocates who have spent years pleading for increased investment in the long-struggling Medicaid home and community-based services program, which serves as the backbone of supports for people with developmental disabilities in this country.


“We are extremely worried about Medicaid right now,” said Nicole Jorwic, chief of advocacy and campaigns at Caring Across Generations, an organization advocating for caregivers and people who rely on them. “We have already heard that Republican leadership is looking into ways to cut Medicaid, like they proposed in 2017 and again in the 2023 debt ceiling fight, with either draconian work requirements or block granting. Either would put at risk the whole home and community-based services infrastructure.”


Traditionally, the federal government has provided matching grants to states to help pay for the cost of care for anyone eligible for Medicaid, no matter how expensive.


However, during his first term, Trump and Republicans in Congress repeatedly pushed to transform Medicaid into a “per-capita cap” or “block grant” system. Under those models, the federal government would instead provide a fixed amount of money to states each year for the program.


Such a change would put pressure on states to limit spending and jeopardize funding for disability services, advocates say.


“If Congress were to block grant the Medicaid program, it would eliminate the minimum standards, leaving all decisions to states on eligibility criteria and scope and duration of services,” said Katy Neas, CEO of The Arc of the United States. “Such changes could force impossible choices. Would states decide to finance health and developmental services for children with disabilities or would they only finance nursing home care for older adults? Would states pay for services that allow an adult to live at home or would that adult be forced into a nursing home or hospital?”


Continued

Congressional Republican Leaders Start to Show Their Hand: Draconian Medicaid Cuts on the Agenda for Next Year 

By Edwin Park, Georgetown University McCourt School of Public Policy, November 18, 2024


I have been warning for months that Medicaid would be on the chopping block if there is a second term of the Trump Administration and if Congressional Republicans win House and Senate majorities in 2025. That is because the Project 2025 blueprint, the fiscal year 2025 Republican Study Committee budget plan, and the fiscal year 2025 House budget resolution all propose draconian Medicaid cuts, with a radical centerpiece of capping and cutting federal Medicaid funding through block grants and/or per capita caps. 

Read the article here

Medicaid cuts in crosshairs as Trump, GOP take control 

by Joseph Choi, The Hill, November 21, 2024


Significant cuts to Medicaid could be on the table next Congress as President-elect Trump and Republicans look for ways to offset tax cuts and streamline government spending. Republicans on Capitol Hill don’t seem thrilled with the idea but aren’t rejecting it outright. 


Sen. Chuck Grassley (R-Iowa) said it was too soon to be sure whether Medicaid cuts were coming. “But with this effort to … reform everything, programs, I think it’s something that you can expect. I wouldn’t be surprised if we were going to be looking,” he said. 


Continued

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Thank you!

Special Education:

How Trump’s Plan To Close The Ed Department Might Impact Students With Disabilities

By Michelle Diament, Disability Scoop, November 18, 2024


President-elect Donald Trump says he wants to eliminate the U.S. Department of Education, but experts are split on what that would mean for students with disabilities across the nation.


On the campaign trail, Trump pledged to close the federal agency responsible for overseeing implementation of the Individuals with Disabilities Education Act and enforcing it.


Shuttering the Education Department would require an act of Congress, but with the former president headed back to the White House, the question of how such a move might impact students in special education emerged at a public briefing of the U.S. Commission on Civil Rights late last week.


Amidst a discussion about teacher shortages, Commissioner Mondaire Jones asked a panel of experts to address how closing the Department of Education could affect students with disabilities.


Eric Hanushek, a fellow at the Hoover Institution at Stanford University who specializes in the economics of education, said that the push to close the Education Department is largely political and wouldn’t fundamentally alter special education.


“I don’t think eliminating the Department of Education would do much,” he said. “Congress is the one who decides on appropriations and they would just redirect who in the executive branch is in charge of these appropriations. So that I don’t think it has any obvious impacts on IDEA funding or other funding.”


However, Hanushek did acknowledge that that doing away with the Education Department might lead to less emphasis on special education if it were tucked into a larger federal agency with other priorities and such changes could compromise the collection of data and the research role of the agency.


William Trachman, general counsel at Mountain States Legal Foundation, a conservative public interest law firm, said that the implications will largely come down to details.


“A lot of the question depends on what replaces a Department of Education,” Trachman said. “If you are merely moving the civil rights office to the (Department of Justice) and the special education office to (the Department of Health and Human Services) and you are block granting things to the states, a lot of the impact of what happens is going to be revealed through those details which I don’t believe any proposal have spelled out so far.”


Others, however, said the consequences of dismantling the Education Department could be dire for students with disabilities, particularly in terms of access and equity and the protection of civil rights.


Continued

The Dept. of Education might shut down. Here’s what that actually means for your neurodivergent or special needs kid

By Annabel Rocha, Reckon Media, November 19, 2024


Over a year ago, the current president-elect Donald Trump promised to shake up education as we know it.


“One other thing I’ll be doing very early in the administration is closing up the Department of Education in Washington, D.C., and sending all education and education work and needs back to the states,” he said in a video posted to social media in October 2023, outlining his vision for education if elected to a second term. “We want them to run the education of our children because they’ll do a much better job of it.”

That radical restructuring of American education is now closer to reality.


Now, as he prepares to take office in January, Trump is doubling down on his pledge to abolish the Department of Education, which was elevated to a Cabinet-level department by President Jimmy Carter in 1979, though federal education oversight has existed in various forms since 1867. Doing so would require an act of Congress, and even though Republicans control both chambers, the measure would need Democratic support to pass, which analysts say is unlikely.


Continued

How Special Education Might Change Under Trump: 5 Takeaways

By Mark Lieberman, Education Week, November 21, 2024


Students with disabilities are among the K-12 populations most likely to feel the impacts if some of President-elect Trump’s most radical and sweeping proposals gain traction.


The bulk of K-12 funding and policymaking happens at the state and local level—but special education is an exception, thanks to the Individuals with Disabilities Education Act (IDEA), which turns 50 next year.


Under IDEA, students with disabilities have a federal right to a free appropriate public education. If schools deprive them of that right, parents can file complaints with their state or the federal government—specifically the U.S. Education Department’s office for civil rights.


  • IEPs and IDEA are most likely here to stay
  • States and districts could face pressure to step up investments
  • Under-the-radar functions like research and technical assistance could suffer
  • Pursuing legal challenges over special education issues could get harder or take longer
  • National attention on special education could open the door to positive change


Read the full article here

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Other National News:

Booker Introduces Bill to Improve Access to Support and Emergency Services for Individuals with Developmental Disabilities

Press release, Office of Cory Booker, November 21, 2024


Today, U.S. Senator Cory Booker (D-NJ) introduced legislation to expand and improve access to critical support services for individuals with Autism and other developmental disabilities. The EASE with 211 Act (Enhancing Access to Support and Emergency Services for Individuals with Developmental Disabilities through 211) would establish a grant program through the Department of Health and Human Services (HHS) to help states expand the capacity of 211 services to better support individuals with developmental disabilities.


The 211 system is a nationwide network of community service programs providing free and confidential information and referrals to callers on where to obtain assistance from local and national social service programs, government agencies, and non-profit organizations. The 211 network can be an incredibly valuable tool to aid vulnerable populations in accessing essential services for their health and survival. 


The majority of the requests that 211 service lines receive are for essential needs like resources to reduce housing and food insecurity and ways to access basic utilities. For individuals with developmental disabilities, the 211 system can serve as an essential bridge to accessing specialized care, resources, and community support. By leveraging 211’s existing infrastructure, the EASE with 211 Act will ensure that individuals with developmental disabilities can more easily find the help they need.


Continued

Preparing State I/DD Systems for Implementation of the Medicaid Access Final Rule

By Anna Lansky, Xue Shetty Dai, Alixandra Gould, and Jona P. B. Frohlich, Manatt Health, November 21, 2024


This spring, the Centers for Medicare & Medicaid Services (CMS) finalized a highly anticipated rule that, among other things, updates program standards and processes for Medicaid home- and community-based services (HCBS), including HCBS for people with intellectual and developmental disabilities

(I/DD). The rule, “Ensuring Access to Medicaid Services” (or the “Access Rule”), establishes or updates requirements for state HCBS incident management systems, payment reporting and adequacy, grievance systems, and access and quality reporting. It also creates new process requirements for when states seek to reduce or restructure rates, and new transparency requirements for publishing fee-for-service HCBS rates. Effective dates vary by provision, ranging from July 2024 to July 2030.


States need to begin assessing their HCBS program policies, processes, and IT infrastructure now to be prepared to fully implement the changes required by the Access Rule within required timelines. Critically, implementation necessitates:


  • Significant investment in IT infrastructure changes or new builds;
  • Close collaboration across Medicaid and I/DD programs; and
  • Sustained engagement with community partners and individuals receiving services, their families, and caregivers.


Continued

Addus CEO: Trump Administration Will Likely ‘Do Away With’ Medicaid Access Rule

By Andrew Donlan, Home Health Care News, November 19, 2024


Addus Homecare Corp. (Nasdaq: ADUS) leaders believe that the Medicaid Access Rule may now be going away due to Donald Trump’s win, as well as the 80-20 provision. 


Broadly, the Medicaid Access Rule was put forth by the Centers for Medicare & Medicaid Services (CMS) to create more transparency in home- and community-based services (HCBS). It also included the 80-20 provision, however, which would have mandated that a certain amount of reimbursement for HCBS go toward direct care workers.


While providers thought the Medicaid Access Rule was generally good policy, most had significant gripes with the idea of wage mandates, particularly because of how much HCBS varies by state. 


Read the full article here

State News:

Illinois - Bill to phase out subminimum wage for Disabled Workers clears General Assembly

By Bill Szalinski, Capitol News Illinois, November 21, 2023


A long-awaited bill to stop Illinois organizations from paying subminimum wage to workers with disabilities will soon head to Gov. JB Pritzker’s desk after being approved by the Senate on Thursday.


The Senate took a bipartisan 43-11 vote to pass the legislation that supporters dub the “Dignity in Pay Act.”


House Bill 793, if signed by the governor, would prohibit businesses and other residential facilities in Illinois from claiming an exemption allowing them to pay workers with disabilities less than minimum wage.


The exemption is known as a 14(c) certificate, named after the section of the Fair Labor Standards Act of 1938 permitting lower wages. Certificate holders are allowed to pay a “commensurate wage” based on the worker’s individual productivity in proportion to the wage and productivity of workers who do not have disabilities but are performing the same or a similar task.


Under the bill, Illinois has through 2029 to abolish the subminimum wage for workers with disabilities.

The bill was previously approved on a bipartisan 78-30 vote in the House in May following lengthy negotiations. It would create a transition grant program designed to provide financial support for organizations to continue employing people with disabilities while paying them at least the state minimum wage. It also establishes a task force to oversee the transition in the coming years.


Pritzker issued a statement on Thursday in support of the bill, which would make Illinois the 19th state to end 14(c) participation.


Read the full article here

Georgia - He was stuck in a hospital for 8 months. How states can fail people with disabilities

By Sam Whitehead, KFF via NPR, November 21, 2024


Lloyd Mills was tired of being stuck in a small, drab hospital room. On a rainy mid-September morning, a small TV attached to a mostly blank white wall played silently. There was nothing in the space to cheer it up — no cards, no flowers.


In February, the 32-year-old with autism, cerebral palsy, and kidney disease was brought to Grady Memorial Hospital from the group home where he had been living because he was having auditory hallucinations and suicidal thoughts, he said.


"Being here is not helping me, mentally, physically, emotionally," Mills said.


He wanted to return to a group home or some other community setting where he could receive the care he needs without being confined. It's his legal right. But it took the state agency overseeing his care more than eight months to get that done — and that placement would be short-lived.


Nearly 15 years ago, the U.S. Department of Justice sued Georgia for unnecessarily segregating people with developmental disabilities and mental illness. The state settled the case and agreed to a massive overhaul of the services it offers to that population. Despite hundreds of millions of dollars in investments and some notable improvements, the state's system of caring for people with developmental disabilities and mental illness still has holes. The gaps often leave people like Mills sequestered in institutional settings and without the proper community supports.


Advocates said those failures continue to violate the rights of Georgians who have been historically marginalized and put their health at risk. 


That decision in Olmstead v. L.C. became the foundation for the lawsuit the Department of Justice levied against Georgia in 2010 that sought to force the state to fix its system.


Later that year, state officials agreed to stop putting people in state hospitals solely because they have developmental disabilities. They also agreed to use Medicaid to pay for people to receive care in the community, and to establish crisis response and housing services for those with mental illness.


The state agreed to make the fixes within five years. Nearly a decade and a half later, it's still not finished.


[See Note Below]


But people with developmental disabilities and mental illness regularly can't find appropriate community placements, so they cycle in and out of hospitals and nursing homes, Goico and other observers noted.

In 2010, Georgia launched a housing voucher program for people with mental illness who are chronically homeless, incarcerated, or continually in and out of emergency rooms.


The state agreed to create the capacity to offer vouchers to 9,000 people by July 2015. Currently, only about 2,300 are in the program. Even so, state lawmakers declined to fund additional waivers in next year's budget, saying they were waiting for an update on Georgia's compliance with the DOJ settlement.


Not only was Lloyd Mills' extended time in the hospital hard mentally and physically, it also made him lose his Medicaid coverage, said his representatives from the Georgia Advocacy Office, a nonprofit that represents people with disabilities.


Because he was in a hospital, he was unable to spend his monthly Supplemental Security Income payments, which accumulated until he had too much money to keep his health coverage.


In late October, eight months after his hospital stay began, the state moved him to a group home in Macon, about 85 miles southeast of Atlanta. In the days before his move, Mills said he was ready to start his next chapter.


"I'm just ready to live my life, and I don't plan on ever coming back here again," he said.


But his stay was short. In mid-November, after just a few weeks of living at the group home, Mills ended up back in a hospital. His advocates worry he won't be heading to a community placement anytime soon.


Read the full article here


Note: This article overlooks the disastrous outcome of DOJ's previous settlement with the state of Georgia, in 2010 and in 2015, which resulted in the death of over 1,000 intellectually disabled individuals. To bring perspective to the above article, we ask that you read the following:


Review critical of Georgia care

By Tom Corwin, The Augusta Chronicle, August 26, 2019


Georgia claims it is in compliance with a settlement with the federal government to improve the care of those with developmental disabilities and mental illness, but an independent source found their death rate is climbing and that the state still failing to meet its responsibility to house thousands suffering from these disorders.


Earlier this year, the state twice asked the Justice Department to find it had complied with and should be released from a 2010 settlement over its treatment of the developmentally disabled and mentally ill in its care. But in her report to the U.S. District Court filed last week, independent reviewer Elizabeth Jones found a number of areas where the state was lacking and in fact doing worse than in previous years, particularly with the deaths of developmentally disabled patients in community care.


An Augusta Chronicle investigation in 2015 found nearly 1,000 deaths among those patients in community care in both 2013 and 2014, and the state has twice halted moving them from state hospitals into community care over the lack of adequate care among those providers. In its last Annual Mortality Review that covered fiscal year 2017, Jones noted that the death rate has continued to climb each year, from 12.5 per 1,000 in fiscal year 2015 to 16.4 per 1,000 in 2017.


"Perhaps most significantly," Jones notes, the death rate for those the state has already identified as high risk is anywhere from twice to four times as high.


Continued



Girl's death among 500 in one year in community care

By Tom Corwin and Sandy Hodson, The Augusta Chronicle, March 21, 2015

Via the USC Annenberg Center for Health Journalism


Months after her daughter died, LaTasha Gordon’s voice still shook with quiet fury as she talked about questions she still has about why her severely developmentally delayed child died in state-sponsored community care.


“I want justice because I want to know what happened,” Gordon said. “Because they weren’t taking care of her the way they were supposed to.”


Christen Shermaine Hope Gordon was one of 500 patients in 2013 who died in community care while under the auspices of the Geor­gia Department of Behavioral Health and Developmental Disabilities. The 12-year-old was one of 82 classified as unexpected deaths, including 68 who, like her, were developmentally disabled. In 2014, an additional 498 patients who were receiving community care died, including 141 considered unexpected.


Despite her mother’s objections, Christen was also one of more than 499, as of January, moved from department facilities to community providers such as group homes under a 2010 settlement with the U.S. Justice Department over the conditions in the state hospitals. Christen is one of 62 of those transfers who have subsequently died.


Faced with mounting evidence, including a rash of deaths, the state agreed to suspend the wholesale transfer of patients out of state hospitals into the community in 2013, subsequently fired a handful of providers and began to reassess how it was doing its community placements.


Late last year, a state official said the department would restart community placements for the developmentally disabled in the region surrounding Augusta with the Pioneer Pilot Project. That worries some parents at the Gracewood wing of East Central Georgia Hospital in Augusta, who aren’t convinced the state can take those patients – many of whom need round-the-clock care – and provide a safe environment.


Continued

DOJ files lawsuit against Pennsylvania, saying state’s fire suppression and sprinkler system laws for group homes are too burdensome

Staff Report, Tri-State Alert, November 19, 2024


The U.S. Attorney’s Office for the Middle District of Pennsylvania and the Justice Department announced today that a lawsuit was filed against the Commonwealth of Pennsylvania, Pennsylvania Department of Labor and Industry and Pennsylvania Department of Human Services to challenge discriminatory code requirements that deny or limit the availability of community-based housing for people with intellectual disabilities and autism.


“Although expensive fire prevention methods, like automatic sprinklers, may reduce personal injury and damage to property, Pennsylvania cannot require individuals with disabilities to obey this code requirement without assessing their unique and specific needs,” said U.S. Attorney Gerard M. Karam for the Middle District of Pennsylvania. “Pennsylvania’s building code enforcement improperly demands individuals with disabilities living in community homes to pay thousands of dollars to install automatic sprinklers yet allows those without disabilities in similar resident housing to avoid such costs. This office will continue to enforce the Fair Housing Act and partner with the Justice Department’s Civil Rights Division to ensure our disabled citizens share the same rights as their neighbors.”


Under the Commonwealth’s Uniform Construction Code, which all local governments must follow, every “community home” for persons with intellectual disabilities and autism must install, at their own expense, an automatic sprinkler system. 


Pennsylvania’s building code classifies community homes for persons with intellectual disabilities and autism as “facilities” and requires them to install automatic sprinkler systems, regardless of how old the home is or how capable the residents are to evacuate notwithstanding their disabilities.


Read the full article here

Hundreds of New York Disability Advocates Rally at the NYS Capitol to Demand a Stable Care System

Press Release from NY Disability Advocates, November 23, 2024


On Tuesday, November 19, over 300 members of New York Disability Advocates (NYDA) coalition rallied in the War Room of the Capitol to urge lawmakers to support a stable care system for New Yorkers with disabilities. Among the attendees were representatives from non-profit provider agencies throughout the state, direct support professionals, family members, and people with disabilities.


NYDA is calling on legislators to address in next year’s state budget the decades-long underfunding that has left non-profit providers struggling to maintain facilities and provide the high quality care that people with disabilities deserve. To address these issues and ensure a stable care system for people with disabilities, NYDA is advocating for a 7.8% Medicaid rate increase, adequate wages for direct support professionals, and enhanced capital funding to meet New York’s ambitious climate goals.


“A stable care system is necessary to uphold dignity, respect, and opportunity for people with disabilities,” said Mike Alvaro, president, New York Disability Advocates. “It’s time for New York to prioritize this funding to ensure non-profit providers have the resources needed to provide the support that New Yorkers with intellectual and developmental disabilities have come to rely on.”


In the FY 2026 Executive Budget NYDA is asking for:

  • A 7.8% Medicaid Rate Increase – Medicaid rates go beyond just addressing wages. Rates for programs and services are all-inclusive and support the whole person. This rate increase would address the rising costs of providing quality care and ensure stability for non-profit providers.
  • Creation of a Wage Commission – A wage commission would examine the roles and responsibilities of human service workers and establish fair, sustainable compensation standards commensurate with their work.
  • Enhanced Capital Funding – This funding would help non-profit providers modernize their operations, making them more energy-efficient and in alignment with the state’s climate goals.


Continued

Maryland - Disability advocates say new state policies will burden caregivers with paperwork

By Danielle J. Brown, Maryland Matters, November 19,2024


Disability advocates who receive “self-directed” care rallied Tuesday in Annapolis to protest new state documentation requirements that they say were rushed through and will burden thousands of disabled people and their caretakers with unnecessary paperwork.


Affected families said they were overwhelmed by the changes, which they only learned about in an Oct. 24 email from the Developmental Disabilities Administration, notifying them of new reporting requirements and a 120-page manual on self-directed services. Those changes are scheduled to take effect Thursday.


At issue are the DDA’s oversight of Medicaid waivers that allow people to receive a wide variety of services, from live-in caregiver supports to transportation, respite care, employment services and more.


About 20,500 Marylanders with developmental disabilities received a Medicaid waiver in 2024 to help their families afford services. Of those, 16,827 families opt for “traditional” services, meaning they join an existing program that provides day care, transportation and other services for people with disabilities.


But 3,632 families choose “self-direction,” which lets them determine how to best support their disabled relative without the guidance of a program, so long as they use those funds on accepted services such as hiring support staff to help with the disabled family member’s day-to-day activities. The waiver recipient, or a designated representative, takes on the responsibility of organizing those services.


But advocates at Tuesday’s rally said the DDA did not seek adequate public input from families and waiver recipients before issuing the new policy changes that require more paperwork and make it harder to self-direct certain services.


“I get perfect care … that’s the way I want it to stay,” said Ed Little, a Frederick resident whose family members manage most of his care under a self-directed Medicaid waiver, at the rally.


Read the full article here

Massachusetts - DDS hearing officer’s denials of appeals for placements at Wrentham Center appear to show bias against families and guardians

By Dave Kassel, COFAR Blog, November 19, 2024


It’s becoming clear that the legal division and even the internal appeals division of the Department of Developmental Services (DDS) have a bias against families and guardians seeking residential placements for their loved ones at state-run congregate care centers in Massachusetts.


A decision by a DDS hearing officer last summer marks at least the second time in the course of a year that the Department shot down appeals by families to transfer intellectually disabled persons from corporate, provider-run group homes to the Wrentham Developmental Center.


In both cases, the same DDS hearing officer, William O’Connell, denied the appeals in rulings that used the same language in many instances. And O’Connell appeared to downplay or even ignore concerns raised by the families about a lack of adequate care and meaningful activities in the “community-based” group homes and day programs.


In his decisions, O’Connell stated either that he did not give “substantial weight” to testimony of the families, or that they had not provided “substantial and probative evidence” that their adult children were receiving inadequate services or that Wrentham had more services and less turnover among staff. At the same time, he found to be “credible” every argument raised against the families by DDS in its closing briefs.


In particular, O’Connell didn’t explain why he didn’t give substantial weight to what is arguably easily verifiable and true assessments about the Wrentham Center regarding services and staff turnover. This is clearly due to the fact that O’Connell fully subscribes to the administration’s ideology that all congregate residential care is institutional and therefore bad.


Continued

A waiting list to join a program for developmentally disabled New Mexicans may be gone, but challenges remain

Dan Boyd, Albuquerque Journal, November 18, 2024


After some families spent more than a decade waiting, Gov. Michelle Lujan Grisham's administration used federal pandemic funds to eliminate a lengthy waitlist for a program providing support services for individuals with developmental disabilities.


But the rapid change has strained the state's provider system and led to cost containment questions, a new legislative report found.


Specifically, about half of the current providers are not accepting new clients in the developmental disability waiver program, which now serves about 7,900 New Mexicans, according to the Legislative Finance Committee report unveiled Monday.


In addition, the total cost of the program hit hit $773 million in the most recent budget year — federal funds make up the bulk of that amount — as per-client costs have continued to surpass projections.


That amount is projected to keep growing in future years as the Lujan Grisham administration's move to eliminate the waiting list is projected to cost about $40 million in additional state funds annually, plus federal matching dollars, starting in the 2025 budget year.


Continued


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VOR Bill Watch:

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VOR SUPPORTS:



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


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

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


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


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

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


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


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

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


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


H.R.670 - Think Differently Database Act

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


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

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


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

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


H.R.3380 - HEADs UP Act of 2023

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


VOR OPPOSES:


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


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

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


S. 1148 - The Guardianship Bill of Rights

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


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

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



VOR HAS SIGNIFICANT CONCERNS WITH:


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

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

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


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

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


S.3118 - The HCBS Relief Act of 2023

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



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



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