November 8, 2024

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.

Follow us on Facebook
Watch us On YouTube
Visit our website: www.vor.net
Click here to Join VOR or Renew your Membership

VOR & You:

The More Things Change, The More They Stay The Same


With the majority of the 2024 election results in, we currently know that Donald Trump will be the 47th President and that the Republicans will have the majority in the Senate. There are several House races yet to be called, but it appears the Republicans will retain a slim majority. 


At VOR, elections are a reminder that our mission for high quality care and human rights for all people with I/DD and autism are constant. Political winds may shift, the people occupying various positions in government may change,but the needs of the most vulnerable Americans still need to be addressed.


As always, we are planning for the incoming Congress and new administration to ensure our bipartisan priorities are most effectively communicated and moved forward. 


Because VOR has always worked with members of both parties, we are well positioned to meet with the incoming members of Congress. Through our advocacy work and reputation on Capitol Hill, VOR has effectively protected the 14(c) program which has been under constant threat the past several years. We have had several meetings with the office of Representative Virginia Foxx, who will be leading the discussions on preserving these opportunities. We have directly assisted in moving forward legislation improving the work status of DSPs with the leaders of the Senate Committee on Aging and Disabilities, and we have already been working alongside Senator Cassidy on legislation to reform Medicare and Medicaid. We will continue our work with members of the House and Senate Appropriations Committees to protect funding for people with I/DD and autism.


Not to mention — we held our first Hill fly-in since the Covid epidemic earlier this year, which was a fantastic opportunity to further our mission and also connect in person with each other. We intend to meet again next spring, dates to be announced, so start preparing now by getting to know who your elected officials are and invite them to visit your loved ones' facilities now.


In the coming days and weeks, we will be communicating with Members of Congress, transition team leaders and key staff working at the federal level impacting the needs of the I/DD community.


Key to our past and future successes is engagement with you! As we ramp up for 2025, please take a moment to connect with us and learn specific ways you can best engage and support VOR.

NOVEMBER:

Now, more than ever.


Our Fall / Winter Campaign for Membership and Donations

is in full swing.


Our work continues.


Please click here to join, renew, or give a gift membership to VOR


We are always grateful for your support!

Chocolate for a Good Cause!


What Could Be Sweeter?


Buy delicious See's Candies to show your support for


VOR'S Winter Fundraising Campaign


Visit our Yum-Raising Shop to purchase your favorites today.


See's Candies make wonderful gifts for your friends, family,

and

The Direct Support Professionals who care for your loved ones!


They're perfect for Thanksgiving, Christmas, Hanukkah, or for any

Holiday Party!


We are taking orders now through December 6th.

Orders will begin shipping on November 11th.


Don't Delay! Order Now! 

The Transition of Power:

The election is over, the seats are being filled. News outlets and political pundits are trying to predict what will policies will evolve in international and domestic affairs. VOR will try to sort through all of this to find a path forward.


Much of what we see in the news is just conjecture. Some of it is based on past actions from the Trump administration and key players in the House and Senate, but nothing is written in stone. Nonetheless, it's worth examining in order to prepare for what lies ahead.


The following stories come from sources we have relied upon in the past.

Trump’s White House Return Poised To Tangle Health Care Safety Net

By Stephanie Armour, KFF Health News, November 6, 2024  


Former President Donald Trump’s election victory and looming return to the White House will likely bring changes that scale back the nation’s public health insurance programs — increasing the uninsured rate, while imposing new barriers to abortion and other reproductive care.


The reverberations will be felt far beyond Washington, D.C., and could include an erosion of the Affordable Care Act’s consumer protections, the imposition of work requirements in Medicaid and funding cuts to the safety net insurance, and challenges to federal agencies that safeguard public health. Abortion restrictions may tighten nationwide with a possible effort to restrict the mailing of abortion medications.

And with the elevation of vaccine skeptic Robert F. Kennedy Jr. to Trump’s inner circle of advisers, public health interventions with rigorous scientific backing — whether fluoridating public water supplies or inoculating children — could come under fire.


While Trump has said he will not try again to repeal the Affordable Care Act, his administration will face an immediate decision next year on whether to back an extension of enhanced premium subsidies for Obamacare insurance plans. Without the enhanced subsidies, steep premium increases causing lower enrollment are projected. The current uninsured rate, about 8%, would almost certainly rise.


Policy specifics have not moved far beyond the “concepts of a plan” Trump said he had during his debate with Harris, though Vice President-elect JD Vance later said the administration would seek to inject more competition into ACA marketplaces.


Trump supporters and others who have worked in his administration say the former president wants to improve the law in ways that will lower costs. They say he has already shown he will be forceful when it comes to lowering high health care prices, pointing to efforts during his presidency to pioneer price transparency in medical costs.


“On affordability, I’d see him building on the first term,” said Brian Blase, who served as a Trump health adviser from 2017 to 2019. Relative to a Democratic administration, he said, there will be “much more focus” on “minimizing fraud and waste.”


Efforts to weaken the ACA could include slashing funds for enrollment outreach, enabling consumers to purchase more health plans that don’t comply with ACA consumer protections, and allowing insurers to charge sicker people higher premiums.


Democrats say they expect the worst.


“We know what their agenda is,” said Leslie Dach, executive chair of Protect Our Care, a health care policy and advocacy organization in Washington, D.C. He worked in the Obama administration helping to implement the ACA. “They’re going to raise costs for millions of Americans and rip coverage away from millions and, meanwhile, they will give tax breaks to rich people.”


Theo Merkel, director of the Private Health Reform Initiative at the right-leaning Paragon Health Institute, which Blase leads, said the enhanced ACA subsidies extended by the Inflation Reduction Act in 2022 do nothing to improve plans or lower premiums. He said they paper over the plans’ low value with larger government subsidies.


Other Trump supporters say the president-elect may support preserving Medicare’s authority to negotiate drug prices, another provision of the IRA. Trump has championed reducing drug prices, and in 2020 advanced a test model that would have tied the prices of some drugs in Medicare to lower costs overseas, said Merkel, who worked in Trump’s first White House. The drug industry successfully sued to block the program.


Within Trump’s circles, some names have already been floated as possible leaders for the Department of Health and Human Services. They include former Louisiana Gov. Bobby Jindal and Seema Verma, who ran the Centers for Medicare & Medicaid Services during the Trump administration.


Kennedy, who suspended his independent presidential run and endorsed Trump, has told his supporters that Trump promised him control of HHS. Trump said publicly before Election Day that he would give Kennedy a big role in his administration, but he may have difficulty winning Senate confirmation for a Cabinet position.


While Trump has vowed to protect Medicare and said he supports funding home care benefits, he’s been less specific about his intentions for Medicaid, which provides coverage to lower-income and disabled people. Some health analysts expect the program will be especially vulnerable to spending cuts, which could help finance the extension of tax breaks that expire at the end of next year.


Possible changes include the imposition of work requirements on beneficiaries in some states. The administration and Republicans in Congress could also try to revamp the way Medicaid is funded. Now, the federal government pays states a variable percentage of program costs. Conservatives have long sought to cap the federal allotments to states, which critics say would lead to draconian cuts.


“Medicaid will be a big target in a Trump administration,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes KFF Health News.


Read the full article here

What Administrative Changes Can Trump Make to Medicaid?

By Robin Rudowitz, Jennifer Tolbert, Elizabeth Hinton, and Alice Burns, KFF, November 8, 2024


With Donald Trump returning to the presidency, the future of Medicaid is uncertain. While Medicaid did not receive a lot of attention directly during the campaign, Trump’s first term can shed light on potential changes that could be implemented administratively without Congress.

Trump administration could choose not to implement or rewrite recent regulations.

The Biden administration finalized a number of major Medicaid regulations designed to promote quality of care and advance access to care for Medicaid enrollees as well as to streamline eligibility and enrollment processes in Medicaid and the Children’s Health Insurance Program (CHIP).


  • The Access rule addresses several dimensions of access: increasing provider rate transparency and accountability, standardizing data and monitoring, and creating opportunities for states to promote active enrollee engagement in their Medicaid programs. The rule also included many provisions governing access to home care (also known as home- and community-based services or HCBS), which include ensuring that at least 80% of spending on certain services be spent on compensation for direct care workers and requiring states to report the number of people on waiting lists for care.


  • The Managed Care rule addresses Medicaid managed care access, financing, and quality, including strengthening standards for timely access to care and states’ monitoring and enforcement efforts.


  • The Long-Term Care Facility (LTC) Staffing rule requires minimum staffing standards for nursing facilities.


  • Two rules streamline Medicaid enrollment and renewal processes for the Medicare Savings Program (MSP) and for Medicaid, CHIP and the Basic Health Program. The first rule helps eligible Medicare beneficiaries more easily access Medicaid coverage of Medicare premiums and cost sharing through the MSP while the second rule simplifies application, enrollment, and renewal processes and removes access barriers for children in CHIP. Each rule is expected to increase Medicaid enrollment by about one million people.


These rules are complex and are set to be implemented over several years. The Trump administration could delay implementation of certain provisions, which would reduce regulation of managed care companies, nursing facilities, and other providers, while rolling back enrollee protections, payment transparency, and improved access. Alternatively, the Trump administration could issue new regulations that would undo these final regulations.


Read the full article here

What Trump’s Win Could Mean For Medicaid, Disability Programs

By Michelle Diament, Disability Scoop, November 8, 2024


With former President Donald Trump returning to the White House, advocates say they are bracing for his administration to push major changes to Medicaid and other programs that people with disabilities rely on.


Trump reclaimed the presidency this week after defeating Vice President Kamala Harris. While the campaign largely steered clear of disability issues, advocates say that Trump’s record during his first term offers reason for worry.


“Based on actions taken during the first Trump administration, we are concerned with what (the) election will mean to the funding and structure of many important programs for people with disabilities like Medicaid, (Individuals with Disabilities Education Act) funding, enforcement of civil rights laws, among others,” said Eric Buehlmann, deputy executive director for public policy at the National Disability Rights Network. “Efforts to radically restructure Medicaid and pay for tax cuts for corporations by cutting other programs, are things we saw last time and expect to be tried again.”


Many of these types of policy changes are echoed in Project 2025, a 900-page conservative playbook from the Heritage Foundation. Though Trump has distanced himself from the plan, it is widely viewed as a possible blueprint for his second term.


Before this week’s election, the Consortium for Constituents with Disabilities, a coalition of national disability organizations, was raising alarm bells about Project 2025. The group called out proposals to restructure Medicaid and impose lifetime eligibility limits on the government health program as well as sweeping changes to the way that special education is funded, a plan to eliminate the U.S. Department of Education and measures that they say would weaken civil rights protections for people with disabilities.


Kim Musheno, vice president of public policy at the Autism Society of America, said her group is particularly worried about any moves the new administration might take to retool health care policies that benefit people with disabilities.


“The Affordable Care Act has been life changing for everyone, especially those with pre-existing conditions, such as autism. Medicaid is literally a lifeline for people with disabilities who depend on home and community-based supports to be able to live with their families, work in the community and stay out of more expensive institutions,” she said. “We fought back attempts to repeal the Affordable Care Act and proposals to (cut) Medicaid before. If similar proposals come forward in the new Congress, we will be ready to defend them again.”


Meanwhile, Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, said advocates are also concerned about the possibility of the government circulating misinformation about autism and vaccines. Trump has reportedly promised a role in his administration to Robert F. Kennedy Jr., who has spent years speaking out about a link between the two, despite studies finding no connection.


During the campaign, Trump faced backlash from disability advocates and members of both political parties for referring to Harris as “mentally impaired” and “mentally disabled.” In addition, Trump’s nephew, Fred C. Trump III, alleged that the former president told him that people like his son, who has intellectual and developmental disabilities, “should just die.”


Nonetheless, Maria Town, president and CEO of the American Association of People with Disabilities, said she’s optimistic that it will be possible to find common ground.


“Regardless of who won, many disabled people have long felt that Social Security and Medicaid’s current levels of function have left a lot to be desired. It’s possible that Trump will be open to some of the changes the community has hoped for in those programs,” she said. “We hope we are all able to move forward and turn a new leaf to create the most positive working environment possible.”


Read the full article here

Medicaid could be targeted for spending cuts under Trump

A growing industry constituency is likely to push back, however

By John Wilkerson, STAT News, Novermber 6, 2024


With former President Trump headed back to the White House, the U.S. Medicaid program, which covers medical care for people with low incomes, could face cuts. 


But Medicaid’s transformation to a program mostly run by private insurers adds an influential industry to its list of guardians, alongside the rural hospitals that rely on the program to balance their budgets.


The threat to Medicaid emerges, in part, from simple math. Republicans are likely to go looking for some major places to cut spending to help fund a plan to extend Trump’s 2017 tax cuts, which expire after next year. When Republicans passed the tax cut legislation, the Congressional Budget Office estimated that the tax cuts would add $1.8 trillion over a decade to the deficit. 


Trump has already promised to not touch Medicare or Social Security, and has called for increasing the defense budget. Medicaid is just about the only large government program left, and Trump has made no similar promise to preserve it.


Despite its importance, it’s not unusual for Medicaid to get little attention during presidential campaigns. Medicare beneficiaries are much more likely to vote than people on Medicaid. Lawmakers pitch Medicare and Social Security as programs that seniors have paid into and are owed. Medicaid, especially among Republicans, is often considered welfare.  


But some powerful industries are Medicaid constituents, too. 


Many people on Medicaid live predominantly in rural areas and small towns, according to Edwin Park, a research professor at Georgetown University’s Center for Children and Families. Hospitals and health centers in those areas have lower profit margins than those in urban areas where a significant percentage of patients are covered by private insurance that pays more than government health insurance. Rural hospitals rely heavily on Medicaid to keep their doors open.


Insurers are another Medicaid constituency. A steady, increasing stream of states have been turning to private insurers to run their Medicaid programs. According to KFF, 41 states and Washington, DC, contract with private managed care insurers to provide residents Medicaid.


“One byproduct of the fact that Medicaid is now largely delivered through private managed care plans is that insurance companies have a big stake in Medicaid,” Levitt said.


The national debt level ballooned during Trump’s first term, and some of his tax and spending proposals would continue to increase it. On the other hand, Trump has said he’d tap the billionaire Elon Musk to help make the government more efficient. Musk recently said he wants to cut national spending by $2 trillion.


Although Trump didn’t say he will target Medicaid for spending cuts during his campaign, Republicans have put forth proposals to reduce Medicaid spending. The Project 2025 blueprint, the 2025 budget plan by the Republican Study Committee, which represents conservative Republicans, and the 2025 House Republican budget resolution all propose major Medicaid reforms. 


Those proposals focus on per-person spending limits and block grants, which give states a fixed amount of federal Medicaid funding, regardless of their actual costs. They also all call for limiting federal funding to state Medicaid programs. The House budget resolution would cut $2.2 trillion from Medicaid over a decade. 


Project 2025 and the conservative members of the House Republican Study Committee also propose restricting eligibility and eliminating the taxes that states charge health care providers to raise Medicaid funding. The Project 2025 plan does not include savings estimates. But estimates in the Republican Study Committee report suggest that their proposals, when combined with block grants for the Affordable Care Act’s marketplace subsidies, could double federal savings compared to the House budget resolution.

The Paragon Health Institute, which includes some of Trump’s inner circle from his past administration, proposed to reduce federal funding for adults added to Medicaid by the Affordable Care Act and make additional funding cuts to wealthy states. Paragon estimates the two proposals would cut federal spending by $592.4 billion from 2026 to 2034.


When Republicans last tried to repeal the Affordable Care Act in 2017, that legislation also called for block granting Medicaid. And during Trump’s first term, his administration laid out how states could implement work requirements in Medicaid plans and approved 13 waivers to roll them out. Only one waiver, Georgia’s, took effect. Trump could resurrect the issue.


“I think that all adds up to Medicaid being a top target for really deep, really damaging cuts,” Park said.


Read the full article here

Six GOP lawmakers poised for power on health care as the Senate flips Republican

By Rachel Cohrs Zhang, STAT News, November 6, 2024


With Republicans set to take control of the Senate in January, a new cast of lawmakers will gain power and influence on health care policy. 


The GOP will have at least 52 seats in the chamber next year, after defeating Democratic senators Jon Tester in Montana and Sherrod Brown in Ohio, and winning the West Virginia seat left open by Joe Manchin. Republicans also fended off challengers in states like Nebraska and Texas.


Republican lawmakers will have chairmanships of plum committees, which carry the ability to schedule hearings, mark up legislation, conduct investigations, and hold subpoena votes. Their offices will also get more staff and resources to execute their visions.


The Senate has been under Democratic control for the past four years, so newly empowered committee chairs will have a bigger platform to advance their policy initiatives. 


The Republican victory in the Senate also makes the race to replace Senate Majority Leader Mitch McConnell (R-Ky.) more important, as the leader of the caucus will determine what legislation gets a vote on the Senate floor, and will be a more influential negotiating partner with the House and White House on key legislation.


STAT takes a look at six lawmakers who will be poised for influence in health care when Republicans take power in early January.


Sen. Bill Cassidy (R-La.) 


Cassidy is the heir apparent to run the Senate health committee, having been the panel’s top Republican this Congress. 


Cassidy has expressed interest in reforming public health agencies including NIH and CDC, which he would oversee under the health committee’s jurisdictio.


Sen . Mike Crapo (R-Idaho)


It’s finally going to be Crapo’s time to shine, after playing second fiddle on the Senate Finance Committee for four years. As a tax lawyer, he’s going to be a key player on dealing with the expiration of the Trump tax cuts next year, as well as the expiring Affordable Care Act premium subsidies. 


Crapo showed during his time with Sen. Ron Wyden (D-Ore.) that the pair can negotiate on major bipartisan health packages, like the committee’s hefty pharmacy benefit manager reform legislation this Congress. 


Read the full article here

This Week's News:

New Study Reports Dramatic Increase in Autism Prevalence

By Amy S. F. Lutz, Inspectrum, via Psychology Today, November 1, 2024


A new study published Wednesday by JAMA Network Open confirmed trends previously reported by the Centers for Disease Control (CDC) and others: autism prevalence is increasing dramatically. The authors—most, but not all, of whom are affiliated with Kaiser Permanente—turned to electronic health records between 2011 and 2022 to track prevalence across populations sorted by age, race, ethnicity, and sex.


Given that the increase in autism prevalence has already been well established, one might wonder how this study contributes to ongoing conversations about autism diagnosis and treatment. The authors are very careful not to speculate on the implications of their findings, limiting their analysis to a strict reporting of the data. Still, these statistics support multiple important conclusions.


Key points

  • A new study published in JAMA reported that autism prevalence dramatically increased between 2011-2022.
  • Findings also suggest possible reductions in racial, ethnic, and gender disparities in autism diagnosis.
  • Factors driving increased prevalence remain undetermined.


Continued

DSP Wages Up, But Disability Providers Still Struggling To Maintain Services

By Michelle Diament, Disability Scoop, November 4, 2024


Hourly pay is on the rise for direct support professionals, but advocates say that doesn’t appear to be enough to forestall the barriers facing people with developmental disabilities seeking services. Across the nation, hourly wages for direct support professionals averaged $15.79 in 2022, exceeding $15 per hour for the first time ever.


Despite the increase, however, the turnover rate in the field remained over 40%, leaving many service providers struggling to maintain enough staff to support people with developmental disabilities living in the community.


The figures come from a report issued by United Cerebral Palsy and the American Network of Community Options and Resources, or ANCOR, which represents disability service providers nationally.


In an ANCOR survey late last year, 77% of providers said they were refusing or no longer accepting referrals and 44% had discontinued offerings. The majority indicated that they were considering additional service cuts.


Providers got some help from the 2021 American Rescue Plan, a pandemic relief package that included $26.3 billion to improve recruitment and retention of direct care providers, according to the report. But, that money — which the advocacy groups say is largely responsible for the increase in DSP wages — must be used up by March 31, 2025.


As of 2022, average vacancy rates for full-time DSPs remained at over 15%, the report indicates. And, wages in some states like Louisiana and Alabama were still under $11 per hour.


Meanwhile, more than half a million Americans with developmental disabilities were on state waiting lists for services last year, with waits averaging 50 months, data shows.


“Decades of underinvestment in the Medicaid program, in which reimbursement rates are set by states and financed with federal matching funds, have effectively rendered providers powerless to raise wages to a competitive level,” said Armando Contreras, president and CEO at United Cerebral Palsy. “Without meaningful action to support the direct care workforce, and the indispensable services direct support professionals provide, people with intellectual and developmental disabilities will continue to spend years waiting for services, delaying their fundamental right to live in their communities and in the most integrated settings possible.”


Read the full article here


What's Happening In Your Community?


Is there an issue in your loved one's home that you need help with?

Do you have information or a news story you would like to share?

Is there legislation in your state house that needs attention?


Contact us at info@vor.net


Connecticut -   State audit finds DDS slow to investigate neglect, abuse, client death

By Brandon Whiting, CT Inside Investigator, November 7, 2024


The State Auditors’ Office uncovered a litany of issues with the Department of Developmental Services (DDS) in its 2021-2022 report, released earlier today. Perhaps the two most concerning findings outlined in the report were DDS’s inconsistent follow up on reports of abuse or neglect, and its lengthy backlog of client death reviews.


In addition, DDS was found to have a lack of proper controls and documentation regarding promotion and hiring, overtime, workers compensation, compensatory time, time reporting codes, procurement, contracting, and state mandated reporting. 


The Auditors reviewed 353 complaints involving intellectually disabled people under DDS care and found that in 70 of these complaints, investigations began anywhere from one to 439 days late. Three cases which were opened in January 2022, had still remained un-updated in DDS’s database as of March 2024. Additionally, DDS did not document the completion dates of 25 investigations. In 10 investigations which substantiated abuse or neglect, DDS was unable to provide the auditors with copies of investigation reports.


“DDS did not complete the abuse and neglect investigations in accordance with its policy, which increased the risk of delayed detection of abuse and neglect,” read the report. “The absence of an investigation report can lead to a lack of accountability.”


The auditors said that DDS’s issues with investigation oversight likely stems from “a lack of management oversight, staffing shortage, and poor recordkeeping.” The auditors recommended that DDS should “strengthen its internal controls and monitoring efforts to ensure the prompt completion and adequate documentation of abuse and neglect investigations.”


The report also found there to be a backlog of mortality reviews, which are reports conducted after a client in DDS care dies, with some of these reviews being submitted to the Independent Mortality Review Board (IMRB) significantly later than the 90-day time frame required of DDS personnel. The auditors found that all 66 mortality reviews conducted by DDS from 2021-2022 were completed anywhere from 85 to 1,251 days late. Auditors also found DDS to have provided no explanations or documentation for these late reporting delays.


“According to the department’s tracking log, as of January 2024, 31 of the 66 cases were still open, 11 needed responses from other state agencies, and the remaining 20 were waiting for IMRB meeting minutes,” read the report.


The auditors asserted that the lack of timely reviews “increases the risk that unexpected deaths due to abuse or neglect were not promptly identified.” Auditors again cited lack of managerial oversight, poor recordkeeping and staff shortages as reasons for DDS’s shortcomings, and recommended it strengthen internal controls and update its outdated policies and procedures regarding its mortality reviews.


Read the full article here

Massachusetts - Update on our efforts to advocate for families in probate court

By David Kassel, The COFAR Blog, November 8, 2024


We reported last month about our efforts to help family members of persons with intellectual and developmental disabilities who have lost their guardianships and have found themselves legally outgunned in probate court.


In many cases, families can’t afford attorneys whose fees can run into the tens of thousands of dollars.

Even family members that do go into probate court with attorneys often feel outnumbered by the personnel arrayed against them there. Those opponents may not only include the attorney or attorneys for the Department of Developmental Services (DDS), but, in many cases, both the state-funded guardian appointed to replace the family member, and the state-funded attorney appointed to represent the intellectually disabled client.


In some cases, even the guardian ad litem (GAL), an attorney appointed to independently advise the judge, may take what appears to be a position against the family. We have seen cases before involving biased GALs.


In two cases in which we are currently involved, the GALs appear to have sided with DDS and with the state-appointed guardians and attorneys in seeking to remove the parents’ guardianships.


Probate judges open to allowing parents’ advocate to attend sessions


Last month, I contacted probate court clerks’ offices in Worcester and Woburn to see whether I could attend court sessions on behalf of the parents in those two cases. I received conflicting answers from the offices as to whether I, as a non-attorney, could appear as an advocate in the sessions.


However, when I did appear in court in those cases, the judge allowed me, in each case, to stay and stand at the counsel table alongside a mother who is seeking to regain her guardianship of her son.


In one of the two cases last month, Middlesex Probate Judge Thomas Barbar allowed me to speak on behalf of the mother, and then suggested that I “work with” her attorney as an advocate for her. It was encouraging, although it wasn’t quite clear whether I will be allowed to continue to address the judge directly in that case.


In the other case, Worcester Probate Judge Kathryn Bailey said she would allow me to be called as a witness for that mother when her case goes to trial, tentatively in February.


I came away from both sessions with a sense that my attending as an advocate from COFAR at least provided some independent weight to both parents’ positions before the court. Both sets of family members seemed to feel that way as well.


But the jury (no pun intended) may still be out on how effective a courtroom advocate, who is not an attorney, can be, and, perhaps ironically, whether I would be allowed to participate as an advocate if the person I am supporting does not have an attorney.


Continued

Colorado - State Settles Lawsuit Over Housing Individuals With Disabilities In Nursing Homes

By Bruce Finley, The Denver Post via Disability Scoop, November 8, 2024


Colorado has agreed to do more to prevent needless isolation of thousands of people with physical disabilities who were confined to nursing homes, settling a federal lawsuit that claimed state health officials illegally segregate too many people.


U.S. Department of Justice officials announced the settlement this month. Colorado officials committed to taking the following actions before February 2026:"


  • Help thousands of nursing facility residents move
  • Identify people at risk of unnecessary confinement
  • Give information needed to make choices.
  • Help people with disabilities find accessible, affordable housing
  • Connect people with Medicaid long-term care services
  • Boost opportunities for people with disabilities to control their care
  • Support family caregivers


It resolves a federal lawsuit filed in September 2023. Federal investigators found Colorado violated the Americans with Disabilities Act by unnecessarily confining people with physical disabilities. They found Colorado had more people with low-care needs living in nursing homes than all but nine states.

Under the ADA, states are required to make services available to people with disabilities in the least restrictive, most integrated setting appropriate for their needs. The services include help with bathing, dressing, managing medications and preparing meals.


Colorado “is violating the ADA by administering its long-term care system in a way that unnecessarily segregates individuals with physical disabilities in nursing facilities and places others with physical disabilities at serious risk of unnecessary institutionalization,” federal prosecutors warned in a March 2022 letter to Gov. Jared Polis.


The lawsuit alleged Colorado had too few in-home service providers, particularly those who could help people find housing that meets their needs. Colorado officials regularly increased payments to nursing homes but not to providers working in the community, the lawsuit said — contributing to the problem by making it financially unattractive to offer home services.


Read the full article here

Minnesota - There’s a shortage of people who take care of our most vulnerable citizens

And it’s no wonder — the pay and support systems for direct support professionals are insufficient. A bill before Congress would help.


By Pam Dewey, MinnPost, November 8, 2024


Did you know that 1 in 4 adults in Minnesota has a disability? Out of the disabled adults who are employed, a shocking 25% live below the poverty line. This is the unfortunate reality for many, resulting from a lack of workplace accommodations, low wages and physical restrictions that inhibit disabled employees from working additional hours.


Without a living wage, it’s challenging to survive, much less afford the support of a personal home health aide. Direct support professionals, or DSPs, are essential to the health and safety of our communities; their support allows disabled individuals to live fulfilling lives.


DSPs play a crucial role in the everyday lives of disabled individuals, assisting with personal tasks, such as teeth and hair brushing, cooking and public outings. The support provided by DSPs results in the safety and independence of our disabled and autistic community members. Just like everyone else, autistic and disabled individuals deserve to live a life where they can flourish.


While the work of DSPs is essential to so many families and individuals across the state of Minnesota, their wages severely undervalue the importance of their roles. According to Access Press, “Nationally, 40 percent of direct care workers live near the poverty line, and 43% of direct care workers rely on public benefits to get by.”


According to the Massachusetts Institute of Technology Living Wage calculator, an hourly pay of $22.49 is considered livable for a single adult with no children in the Twin Cities metro, while $43.91 an hour is the wage required for one adult with one child. Yet, DSPs are currently paid $16.22 per hour, which is far below the stated living wage.


Due to the extreme shortfall in necessary compensation, our nation is now experiencing a detrimental hiring and retention crisis. As stated by Access Press, the national turnover rate for DSPs is between 40% and 60%.


In addition to unreasonable wages, retention difficulties and high turnover rates are caused by a “lack of professional development or career growth opportunities, … lack of benefits, and rising inflation/cost of living over the past two decades.” Another factor that greatly contributed to the DSP shortage was the COVID-19 pandemic. Many DSPs were faced with the stress and anxiety of transmitting the disease to their clients, resulting in many of these professionals leaving their occupations.


While this has become a national issue, the situation in Minnesota is particularly concerning. As stated by the Minnesota Department of Human Services, “Minnesotans in every region of the state are struggling to recruit and retain direct support professionals (DSPs)… numerous positions remain unfilled and shortages are predicted to get worse over the next 10 years.”


The Long-Term Care Workforce Support Act proposes legislation to aid DSPs by “improving caregiver compensation, benefits, and support systems.” This bill will greatly support DSPs as it aims to enhance workplace protection and wellness support, increase compensation, and address low Medicaid reimbursement rates.


In order to secure DSPs positions, it is up to us to show them our support. To support this bill, contact your local members of Congress. DSPs are essential to our healthcare system, and we need them to continue providing the care that they do.  


Read the full article here

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.

VOR Bill Watch:

[Please click on blue link to view information about the bill]


VOR SUPPORTS:



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


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

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


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


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

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


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


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

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


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


H.R.670 - Think Differently Database Act

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


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

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


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

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


H.R.3380 - HEADs UP Act of 2023

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


VOR OPPOSES:


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


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

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


S. 1148 - The Guardianship Bill of Rights

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


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

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



VOR HAS SIGNIFICANT CONCERNS WITH:


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

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

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


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

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


S.3118 - The HCBS Relief Act of 2023

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



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



Please click here to Join, Renew, or Donate to VOR
836 South Arlington Heights Road #351
Elk Grove Village, IL 60007

Toll Free: 877-399-4867 Fax: 877-866-8377
Facebook  Twitter  Youtube  
FACEBOOK: /VOR ----- TWITTER: @VOR_NET ----- YouTube