September 6, 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:

In Loving Memory

Larry Innis


May 25, 1949 to August 30, 2024


It is with great sadness that we share that we lost a member of our family last week. Our Treasurer, Larry Innis, passed away on August 30, 2024 Larry died peacefully, with family by his side, in his home town of Bethalto, Illinois.

Larry Robert Innis was born May 25, 1949, to Sarah Watkins Innis and Robert Innis. He attended Civic Memorial High School and Southern Illinois University. After earning an MBA from the University of Missouri, Larry volunteered in the office of Ohio Congresswoman Marcy Kaptur. His love of sailing and government led him to work as a staffer for the Coast Guard Subcommittee on Merchant Marine and Fisheries. He subsequently established his own company, Innis Associates, which provided legislative consulting in the boating industry. He established the Washington D.C. office for Marine Retailers Association of the Americas and worked for them until his retirement. He played a leading role in the creation of the Marina Operators Association and the Environmental Education Foundation. He successfully lobbied for the Clean Water Act and for safe boating legislation.


Larry came to VOR as a federal legislative liaison, working on Capitol Hill with Peter Kinzler and Tamie Hopp. After he retired from that position, he joined our Board of Directors, and served as Treasurer from late 2015 until his death last month.


Larry’s dedication to VOR was outstanding, and he was the only member of our board who did not have a family member with and intellectual or developmental disability or autism, nor had he worked in as a DSP or in any facility providing for their care. Larry just cared.


Larry had a gift. His powers of persuasion came from a soft voice and a cheerful disposition. He spoke softly, but with both warmth and conviction. People listened.


Larry lived for many years in Annapolis, Maryland, where he enjoyed sailing his Hinckley sailboat on the Chesapeake Bay and driving classic sports cars. He was an active member of the First Presbyterian Church of Annapolis and was a supporter of the Annapolis Symphony Orchestra and the Chesapeake Youth Symphony. He was a collector of nautical antiques and a lover of history.


Larry is survived by his beloved son, Drew. He also leaves behind many dear friends. Larry will always be remembered as a part of VOR’s history, and one of its truest friends.


If you would like to make a donation to VOR in Larry’s memory, please click here.


We alsk that those who knew Larry please visit his legacy page to sign his guest book and post a fond memory.

https://www.legacy.com/us/obituaries/thetelegraph/name/larry-innis-obituary?id=56205951

Another Member of Our Family:

Virginia - Amherst Mother Lobbies State to Find Suitable Location for Son with Medical Needs

By Justin Faulconer, The News & Advance, September 1, 2024


A family album dear to Amherst County resident Martha Bryant’s heart shows a photo of her and her twin sons, Tyler and Taylor, as young boys and the phrase “With God all things are possible.”


Just more than 7½ years after the brothers were relocated from the former Central Virginia Training Center in Amherst County to the Hiram W. Davis Medical Center in Petersburg, Bryant’s prayer is a state facility that will meet her surviving son’s medical needs. Tyler died two months after the move and Taylor has been in a challenging environment at the Petersburg center, Bryant said.


“I’m praying for God to make a way,” Bryant said. “We’ve been praying this ‘God, make a way’ for 30 years.”


The Virginia Department of Behavioral Health and Development Services (DBHDS) recently announced the Petersburg medical center will close no later than 2027, which Bryant said during an interview caught her somewhat off-guard. She did not consent to moving her sons out of CVTC, a state-run facility in Madison Heights that closed in April 2020, and fought them going to Hiram Davis, which is about a 2½-hour drive from her Amherst home.

Tyler “spiraled down terribly” following the move from CVTC, she said. He died March 16, 2017, at age 23.


Taylor fared better but isn’t in a setting as good for him as CVTC was, going from his own custom room to sharing a “very tight” room with several others in a building that has a host of issues and constantly causes her to worry over his quality of care, according to Bryant.


She’s toured multiple facilities across the state but “once you say intellectual disability, Medicaid reimbursement” and his requiring a tracheostomy (trach) tube, just fewer than a dozen will provide that, she said. Taylor sometimes is around others with psychiatric issues, which he doesn’t have, and he didn’t come across at CVTC, she added.


“The family would like him to be closer and be in a non-psychiatric setting,” Bryant said. “I can’t defend that building. It’s a terrible building and it’s failing rapidly.”

Just in the past year she said contaminated water, failing air conditioning and a broken elevator are among its problems, leaving her frustrated by what she feels is a lack of planning by DBHDS in not wanting to spend money for needed repairs and investment. “In other words, letting us stay in this situation,” she said.


The 94-bed facility was built in 1974 and, as of Aug. 6 had 46 patients, according to an Aug. 9 news release from DBHDS.


“HDMC has undergone no major renovations in its history and all of its building systems are nearing, or have exceeded, the end of their estimated life,” the release said. “The building design does not allow for phased renovations, meaning that staff and residents would need to vacate the building for up to 24 months to accomplish any significant and costly repairs.”

DBHDS Commissioner Nelson Smith said in the release: “Given its current state, which requires extensive repairs and renovations to maintain the highest level of care, closing the center is the best option.”


Bryant’s hope is a replacement facility with the same services closer to home. “The model is good, the building is terrible,” she said of Hiram Davis.


While attending a DBHDS official’s recent presentation in Richmond, Bryant said she observed a major focus on the mental health side of priorities listed. She requested Hiram Davis upgrades or replacement to be put on the list.


“Hiram has got to be a priority,” she has told state representatives. She also fears Taylor could be placed in a hospital, which she doesn’t want.


She described issues Taylor has had with medication, losing weight with tube feeding and challenges in consistent safety there, adding he has done well to only have two hospitalizations in nearly eight years. The nursing shortage and lack of skilled nursing beds is a major problem, she said.


A lot of times Taylor’s Medicaid reimbursement doesn’t cover the cost of care, she said. She has looked into the Southeastern Virginia Training Center in Chesapeake, which is farther away and doesn’t meet Taylor’s skilled nursing needs. Her priority for Taylor is a true skilled nursing model of care closer to home.


She said a care provider in the private sector could “cherry pick” who they want to serve, and fears Taylor could be discharged at any given time.


Taylor is next door to Alisha Gupta, the last resident to be relocated from CVTC in April 2020, and the two families both say they won’t accept less than what their children need, Bryant said.


Atul Gupta, her father, in an interview said when CVTC closed against his family’s wishes, they were told Hiram Davis would be home. Four years later, the family has to look for a new one, he said in voicing frustrations “the commonwealth doesn’t have a long-term plan for disabled people in their care.”


Not having a plan is unacceptable, he said of “a very sad state of affairs.” His question to the state is: why aren’t there more skilled nursing beds?


Lauren Cunningham, a spokeswoman for DBHDS, said most other states do not operate the type of medical center as Hiram Davis or skilled nursing beds and instead rely on the private sector to provide specialized medical care for those who need it.


“DBHDS has been working to incentivize private skilled-care beds that admit patients with behavioral health disorders and developmental disabilities, and we work with those private facilities to increase their staff’s ability to care for these individuals by providing training and resources,” Cunningham said.


Placing Alisha in a private nursing home is not an option because she would lose legal protection from being discharged, Gupta said. His wife moved to Colonial Heights so she can visit Alisha every day and he commutes from Lynchburg, where he serves as a city school board member, at least once per week to see her, he said.


“Every time my daughter goes to a hospital it is a nightmare to feed her,” Gupta said. “They’re not ready.”

Gupta feels an optimal solution is a new skilled nursing bed facility in Richmond or Petersburg, which he added is centrally located for Virginia residents.


“Some people will die without this setting,” Gupta said.


Read the full article here

September is National Direct Support Professionals Appreciation Month

Texas - Groups Seek Pay Hike for Caregivers of People with Intellectual, Developmental Disabilities  

by Monique Webb, Houston Landing, September 3, 2024


It has been a blessing and a nightmare ever since Marisa Luparello placed her now 25-year-old son Blaine, who has autism, attention-deficit/hyperactivity disorder and bipolar disorder, in a group home nearly 13 years ago. 


After Hurricane Katrina flooded their family home in Metairie, Louisiana, they struggled to find a place to rent. Instead, they bounced from hotels to staying with family members, but couldn’t settle into permanent housing.


The unstable living situation most affected Blaine, who thrives on routine. Without one, he’d have outbursts that would turn physical. 


“He went ballistic and wouldn’t leave my car, attacked me all the time, so I had to get him somewhere where he was stabilized and able to get some kind of normalcy,” Luparello said. “That was the hardest thing. He is my baby.”


With health issues of her own dealing with dysautonomia, a nervous system disorder that causes her to occasionally pass out, a husband who travels frequently for work, and a daughter in college who struggles with lupus, she needed help. 


Once in the Houston area, she placed her son in an intensive, round-the-clock group home designed to create routine and provide habilitation care, such as nursing services, behavioral support and dietary services. 

Luparello is among a collective of Texas families, service providers and community leaders who say the state has failed to provide and fund quality care for people with intellectual and developmental disabilities at home or via community services. They are calling on state legislators to raise wages for direct support professionals, caregivers whose base hourly wage in Texas is $10.60, a rate advocates say is inadequate to recruit and retain quality staff.


“We inevitably see increased costs to local governments and taxpayers because DSP income falls below the poverty line, prompting many of them to turn to public assistance programs. Investing in our DSP workforce isn’t just compassionate. It’s the only financially sound approach for Texas communities,” Charles Njuguna, president and CEO of The Center For Pursuit, said last week at a joint press conference alongside leaders of the Down Syndrome Association of Houston, the Avondale House, and the Time to Care Coalition.


The lack of investment also poses a significant public safety risk, said Michael Roberts, executive director of Down Syndrome Association of Houston.


“When individuals with IDD lack proper support, they can end up in situations that lead to homelessness, hospitalization, and even incarceration, which further burdens our state’s social service and emergency resources,” he said. “We cannot afford to overlook this risk.”


Continued

Opinion: A Connecticut Worker has Two Full-Time Jobs. Patients, Students, and Workforce Deserve Better.  

By Rob Baril, (Pressident of SEIU 1199 NE), The Hartford Courant, September 1, 2024


Hartford’s Yvonne Dimmet won’t be working this Labor Day. That is rare for Yvonne, who holds two full-time jobs, both demanding, care focused 40-hour positions. With overtime that often leads to 110-hour work weeks, as she recently detailed to me in a meeting of 1199NE leaders working in non-profit group homes caring for developmentally disabled adults.


Medicaid-funded agencies like Yvonne’s have been starved for funding since 2009, victims of successive austerity budgets to the tune of more than $500 million since the start of the Great Recession. These cuts haven’t just been numbers on a balance sheet—they’ve been lives affected, futures dimmed, and dreams deferred.


Last May, Yvonne and 1.500 1199NE members at six group home agencies decided to take a stand by striking against poverty wages for 21 days. It was a strike not against the employers, but legislated poverty.


These health care workers toil day in and day out at the bottom of the “care economy.” They are predominantly female, often Black and brown, and almost always motivated by a deep commitment to offer gentle compassion to those in need. Dimmett and other caregivers feed, bathe, and care for adult group home residents, as well as providing recreation, job support, and a listening ear.


The strike leveraged about $1.25/hr in raises for 20,000 workers in the industry —the biggest raise in years, but only up to a minimum of $18.50/hr— It’s a start, but not nearly enough to lift caregivers out of poverty. Among those on the picket lines were a few full-time workers who were, at that very moment, struggling with homelessness.


Why wasn’t more funding available, even with billions in budget surpluses? The answer lies in Connecticut’s fiscal guardrails. The guardrails are intended to protect the state’s financial health- a laudable goal and one of Governor Lamont’s signature achievements.


But for care work the guardrails are shackles, preventing spending on pressing, immediate needs. Yvonne’s work—work funded by the public sector Medicaid dollars—is undervalued and underfunded.


The guardrails are now impacting every aspect of working class life. Rising tuitions and program closures at state community colleges. School layoffs in virtually every city and town. Shrinking Husky eligibility. Long waits for state funded addiction and mental health treatment. Long term care workers with rising rents being forced into the streets. Nursing home residents without access to quality, nutritional food or safe, stable staffing of nurses aides and nurses.


Continued

Other State News:

Federal Judge Rejects Illinois’ Bid to End Court Oversight of Disability Programs

By Molly Parker and Beth Hundsdorfer, Capitol News Illinois, September 6, 2024


A federal judge on Friday denied Illinois' request to end court oversight of its disability services.

Judge Sharon Johnson Coleman, with the U.S. District Court for the Northern District of Illinois, agreed with legal advocates who argued that the state still hasn't met its decade-old promises to help people with intellectual and developmental disabilities live outside large institutions.


The ruling stems from a legal settlement that established court oversight of the Illinois Department of Human Services’ programs in 2011. Known as the Ligas consent decree, it followed a 2005 lawsuit accusing Illinois of failing to support people who wanted to live in community settings — whether with family, in their own homes, or in small group homes. The lawsuit claimed Illinois violated a 1999 U.S. Supreme Court ruling, which mandated that states provide options for care in integrated community settings.


In a court filing late last year, the state argued that it had substantially increased funding for community-based care and, as a result, saw the number of people served in family homes and group homes increase from 13,500 in 2011 to over 23,000 in 2023. The state also said it had raised pay for workers who assist with daily tasks like eating and bathing in community settings and had reduced wait times for services, especially for those in crisis.


Read the full article here


Note: The above ruling appears to indicate that Illinois is not meeting its responsibility in moving people out of institutional settings and into group homes. But a recent report from the Illinois Auditor General indicates that the state is not meeting its responsibilities in attending to its group homes (CILAs) Click here to download the Auditor General's report on the Department of Human Services' Oversight and Monitoring of the Community Integrated Living Program.


Ohio - ‘I went into panic mode’; Families Want Answers as Group Homes Close Following Funding Reductions

By Samantha Wildow, Dayton Daily News, August 30, 2024


For the Degnan family, it was a battle to find a group home like Places Inc. for their brother, Chris, who was diagnosed with schizophrenia at around 18 years old.


“This is the last thing any of us ever expected to hear about,” Chris’ brother Steve Degnan said, describing what it was like for them when they found out Places Inc. was closing its group homes. Chris has been a resident of Places Inc. for more than 30 years, his family said.


“It’s been a rock for decades,” Degnan said.


Places Inc., a nonprofit providing supportive housing and health care services to adults with severe mental health challenges, announced it would be closing 36 beds in four permanent housing facilities.

The closures of Places Inc. group homes comes after the Montgomery County Alcohol, Drug Addiction and Mental Health Services (ADAMHS) board approved funding reductions for multiple mental health agencies in the county.


Montgomery County ADAMHS further reduced the funding approved for Places Inc. two weeks after the original amount was discussed at its program and services committee meeting earlier this month, as staff and trustees conveyed they were caught off guard by Places Inc.’s decision to close the group homes.


“I was completely shell-shocked,” said Kim Roberson, who is a caregiver for her brother. Her brother is also a resident of one of the Places Inc. group homes and has schizophrenia.


“I just went into panic mode,” Roberson said after finding out they would have to find him new housing after her brother had been living in a Places Inc. group home for more than 25 years.


Earlier this month, the full 2024 funding amount for Places Inc. was disclosed as $861,161, according to ADAMHS. Places Inc.’s 2023 funding was $1,266,512 from ADAMHS.


This week, the full 2024 amount went down to $703,013 in order to account for the closure of the group homes, according to ADAMHS.


The new contract only funds Places Inc. through the last 30 days of the group homes being open instead of the remainder of the year, said Laura Ferrell, CEO of Places Inc.


“Unfortunately, that means there are no options for us to find another way in the 30 days to reverse the closing decision,” Ferrell said to the Dayton Daily News.


ADAMHS board trustees approved the funding reductions for Places Inc. and a number of other mental health agencies on Wednesday evening as staff provided board trustees detailed notes on the changes.


For the families, it’s not just about finding a group home their loved one is happy with, but they’re concerned with making sure this change does not cause a disruption in their loved one’s treatment.


The Degnan family described how they recently went through an ordeal where Chris’ medication changed during the pandemic, even causing some mobility issues due to an anti-psychotic medication he was taking.


It took them multiple iterations of new medications after that before they found one that worked, Degnan said.


“When we make this jump to whatever the new facility is, the risk of that getting screwed up again is huge,” Degnan said.


Michele Emerick had been trying to get a spot in a Places Inc. group home for her son, Christopher, for years, she said. He was finally able to get a spot after he lived in four previous group homes.


“He’s lived there for a year and a half, and this is the best group home he’s ever had,” Emerick said. Emerick, who lives in Huber Heights, travels for work since she is a flight attendant. Christopher, who is on the autism spectrum, needs someone to provide him daily support for his medication and other needs.


“Most of the people that live there, they don’t have family,” Emerick said.


Continued

Louisiana - Services for People with Disabilities Could Be Eliminated under Landry Budget Plan

By Julie O'Donohue, Louisiana Illuminator, August 30, 2024


Programs for medically vulnerable children, seniors and people with disabilities could be eliminated next year as a result of Louisiana’s looming budget deficit, officials with Gov. Jeff Landry’s administration said Friday.

Louisiana Health Secretary Michael Harrington laid out services he might be forced to cut if the governor and lawmakers reduce the state health care budget by $105.1 million to deal with a financial gap in the next fiscal year. He’s been told to expect a large cut as the state tries to figure out how it will cope with automatic tax reductions scheduled for mid-2025. 


Harrington said that $105.1 million cut to state health care services would balloon to an overall loss of $332.4 million with resulting federal funding reductions. The state would no longer be able to put up the money needed to draw down more dollars from the federal government for health care services. 


Given the size of the cut the state health department anticipates, Harrington said there are few options for absorbing the budget reduction that don’t involve eliminating programs considered crucial for seniors, children or people with disabilities.

“Any of these kinds of cuts is going to naturally impact the most vulnerable,” Harrington said at a Louisiana House budget hearing Friday. “That’s what we [the health department] do. We take care of seniors and children.”


More than 90% of Louisiana’s $19.9 billion health care budget is spent on Medicaid programs, which pays for health care for people who are pregnant, low-income or disabled, according to Harrington. The bulk of that money, 71%, comes from the federal government, but the state is required to contribute funds in order to receive the federal support. 


If forced to make a $105.1 million reduction, Harrington said the Landry administration would eliminate pediatric day care centers ($26.4 million) for families with medically fragile children. Money for a program that helps children with behavioral challenges, called the coordinated system of care, would also be reduced by $5.9 million. 


Continued

Iowans Who Need Disability Services Face up to Five-Year Wait

By Emily Andersen, The Gazette, September 3, 2024


Gauri McClure thrives on structure. At 8 years old she was diagnosed with focal dermal hypoplasia — a genetic disorder that affects her eyes and other organs and causes developmental delays that make it hard for her to stay organized and on time without help.


Now 16, Gauri relies on her mother’s planning to stay on task.


“As a soon-to-be 11th-grader, she can't tell time,” Gauri’s mother, Karla McClure, said last month. “She cannot count money. She doesn't know what tomorrow means or what ‘in an hour’ means. She doesn't have a sense of time whatsoever.”


As a single, working parent, Karla isn’t always able to be around to help Gauri, so she does a lot of advanced planning. Karla leaves for work each morning before Gauri has to get herself to the bus for school, so she leaves Gauri with a detailed morning cheat sheet outlining exactly when she needs to brush her teeth, take out the dogs, lock the door and begin walking to the bus stop.

“Gauri needs a lot of structure in order to function well. She's mobile. She moves around. She talks, but her processing is very slow, and if there are any changes, she has a hard time understanding how that change will impact herself and others,” Karla said.


Karla works as a special-education teacher at Linn-Mar High School. She previously worked as the director of special education at Prairie High School, and has worked in other administrative roles, but left administration when she got the notice 10 years ago that she and her then-husband would be able to adopt Gauri, who was born in India.


Because of her experience working with special needs students and families, Karla knew when Gauri was diagnosed that she would want respite services, like a home nursing system, by the time Gauri was in high school. What she didn’t know was how long it would take to get approved for those services.


Respite services are available through the Iowa Medicaid program. Beyond providing basic health insurance for those who can’t pay for it themselves or access it through employment benefits, Medicaid also covers the costs of needed services and equipment that aren’t covered under most private insurance plans for people with disabilities. These needs include things like respite care, wheelchairs, occupational therapy, and other services.


In order to access disability services through Medicaid, a person has to be approved for a disability waiver, meaning the income requirements for Medicaid are waived. There are currently seven disability waiver categories in Iowa: elderly; physical disability; health and disability; brain injury; AIDS/HIV; intellectual disability; and children’s mental health.


When Karla was the director of special education at Prairie, she often worked with families who applied for and received a disability waiver within a few months or a year.


But when Karla filled out an application for Gauri’s Medicaid waiver two and a half years ago, she was told the wait would be up to five years. Now she’s just hoping to have access to respite care by the time Gauri graduates high school.


There are many factors that contribute to the long waitlist for Medicaid waivers, but it mostly comes down to a lack of funding, according to Theresa Lewis, executive director of The Arc of East Central Iowa. The Arc is a nonprofit agency that provides disability services.


“Medicaid doesn’t have a ton of money, and their budget keeps getting cut every year. Waivers mean that you get any service that you qualify for, for free. So, somebody has got to pay for that,” Lewis said.

Iowa overhauled its Medicaid system in 2016, switching from a state-run insurance program to a managed-care model, which utilizes three out-of-state insurance companies to manage Medicaid coverage for Iowans. Lewis said she believes that change has contributed to the funding issues that providers are seeing now.


“Prior to that, providers got regular increases that mostly kept up with the cost to provide the service,” Lewis said, adding that managed care “made things difficult for a lot of providers, The Arc being one.


“If you look back at the history of our budgets, it was positive, positive, positive, until 2016, when managed care took over and it wasn’t as positive. Then in 2017 and 2018, it was negative,” Lewis said.


Continued

Oklahoma - Opinion: First Do No Harm: It’s Time to Undo the Governor’s Managed Care Disaster

By Dr. Stephen Jimerson, The Norman Transcript, September 6, 2024


Tell me if you’ve heard this one before: “Trust us, we’re with the health insurance company.”


For patients and doctors, it’s a familiar refrain, especially when it comes to care for patients on Medicaid.

Oklahoma receives funding from the federal Medicaid program with the disbursement of funds flowing to physicians to reimburse the cost of treating Medicaid-eligible patients, including single mothers and their children, low income seniors and Oklahomans with a disability.


From 1996 to April of this year, Oklahoma managed its Medicaid program through “Soonercare,” which operated successfully under the purview of the Oklahoma Health Care Authority. Under Soonercare, patients were served and medical claims were processed quickly, with the vast majority being processed within 24 hours.


In fact, a 2022 review of Soonercare found that our state’s Provider Error Rate Measurement (PERM), a rate that measures how accurately states process Medicaid claims and determine eligibility, had an error rate of only 1.95% — placing Oklahoma at second best in the country and well below the national error rate of 15.62%.


In short, Soonercare wasn’t just working – it was best in class. Oklahomans who needed care were receiving it, and physicians who provided the care were being reimbursed for the work.


Our Medicaid program wasn’t broken, but that didn’t stop Kevin Stitt from trying to “fix it” anyway. And how, you might be asking, did he propose to fix our best in class program? By handing the program over to insurance companies – privatizing a well-run state government program.


Yes, really.


It was still the governor’s first term in office when he forced the Oklahoma Health Care Authority to issue contracts to four health insurance companies to “manage” our state’s Medicaid dollars.


The first time around, the governor did not even seek legislative approval for the more than $2.1 billion in new contracts for his insurance company cronies. Challenged legally by physicians represented by the Oklahoma State Medical Association and others, the contracts were ultimately voided by the Oklahoma State Supreme Court, which ruled in June of 2021 that the State Constitution gives the legislature sole authority over budget allocations.


Not to be detoured, Stitt went back to the drawing board, pitching his insurance company healthcare takeover to legislative leaders until he ultimately got his way in 2022, when the legislature passed a new managed care plan that promised timely response and an easier process for patients and physicians alike.


The slow-motion shipwreck that ensued was entirely predictable.


Since Oklahomans were forced to transition to managed care in April of this year, here’s what’s happened just in my office:


My office manager now spends hours a day on the phone appealing to “representatives” for the managed care insurance companies, who routinely deny things as simple as a urine analysis – something we do at every appointment during a woman’s pregnancy to monitor the health of a mother and her unborn child.


For the services that are approved, our reimbursements from the insurance companies have arrived slowly or not at all, in a way that would be comical if it weren’t potentially devastating to my medical practice. As an example, reimbursement checks for my office in Norman have routinely and without explanation been mailed to South Carolina. By the time they are re-routed to my address in Norman, the checks have been voided, and the managed care companies told my office manager they would reissue the check with the correct address. When the checks were reissued, the checks were again mailed to South Carolina.


And I’m not alone. Ask any provider, from obstetricians to behavioral health practitioners, and you’ll find similar stories.


Physicians are being forced to take out loans to make payroll – all while the managed care companies are earning interest on millions of dollars earmarked to treat Oklahomans.


Continued

National News: The Future of Medicaid

VOR members come in all political stripes, and have strong convictions on both sides of the issues that are prominent in the coming election: Second Amendment Rights vs. Gun Safety, Right to Life vs. Reproductive Rights; The Economy.


One thing we all have in common is the fact that most of our loved ones rely on Medicaid for their support. Whether in ICFs, group homes, nursing homes, independent living, or family homes, Medicaid provides for their essential services.


The two candidates for the Presidency, and the platforms of their parties, differ greatly on the future of Medicaid.


We urge our members to look for themselves at this issue, and put it into perspective with the other issues that will determine your vote. We urge our members to seek other sources, from media from both sides of the aisle, to better understand this issue.


We do not wish to tell anyone how to vote. Nor do we want to alienate any of our members by printing anything that may be considered as favoring either party.


Here are a few articles that appear less biased than others. We start with one from the Kaiser Family Foundation, a source we have relied on for years as a forum for issures that matter to the families of people with I/DD and autism.

What the Outcome of the Election Could Mean for Medicaid

By Elizabeth Williams, Robin Rudowitz, Jennifer Tolbert, Elizabeth Hinton, Alice Burns, Priya Chidambaram, and Jada Raphael, Kaiser Family Foundation, September 6, 2024    


While Medicaid policy may not be a central issue candidates are talking about, the outcome of the election could have major implications for Medicaid, the primary program providing comprehensive coverage for over one in five low-income Americans. Medicaid is jointly financed by the federal government and states and administered by states within broad federal guidelines. Medicaid represents nearly one in five dollars spent on health and disproportionately finances safety-net hospitals and clinics, behavioral health care, and long-term services and supports (LTSS) in the community and nursing homes for seniors and people with disabilities. Medicaid has become a major part of our health care system, with two-thirds of Americans having a connection to Medicaid. Public opinion polling shows Medicaid has broad support across political parties.


This brief highlights major policy differences under the Biden-Harris Administration and the Trump Administration on key Medicaid topic areas.


Continued

Future of Medicaid Likely Hinges on Election but Voters Are Not Yet Hearing About Candidates' Views

By Joan Aiker and Michael Perry, Georgetown University, McCourt School of Public Policy, August 27, 2024


We’ve worked on Medicaid policy and/or public opinion research for three decades now and have observed its growing importance as the backbone of our health care system – now covering approximately 80 million people — as well as its centrality to voters. Medicare and Social Security are often described as the third rail of politics and had many mentions at last week’s Democratic convention; Medicaid gets less attention; yet it consistently polls almost as well as Medicare.


As a very consequential election approaches, Medicaid should be added to the long list of issues whose future may hang in the balance.


Two-thirds of Americans say they have a personal connection to Medicaid and most of these (59%) have actually been enrolled or had a family member or close friend covered by Medicaid at some point. Medicaid engenders positive views among the public across parties with higher favorability ratings for Democrats but a clear majority across parties. Interestingly, Republicans with a personal connection to the program value it more. The numbers of people with a personal connection to Medicaid is growing; Medicaid covers approximately half of all children, including a larger share of children of color, pays for 40-50 percent of births depending on the state, is the largest payer for behavioral health care services and long term services and supports, helps make Medicare affordable for low-income seniors, and covers many low-income parents and other adults.


Read the full article here

2024 Pre-Election Analysis: Health Care Issues

By Alexander Hecht, Matthew Tikhonovsky, and Daniel A. Cody, Mintz Insights, via JD Supra, August 26, 2024



In recent elections, health care has been one of the most hot-button issues with consequences for millions of Americans, and this election is no exception. The next administration and the 119th Congress have the potential to shape the future of the Affordable Care Act (ACA), Medicare (including the new Medicare drug price negotiation program), Medicaid, abortion and contraception rights, pharmacy benefit manager (PBM) reform, and health equity issues, among other issues. Vice President Harris and former President Trump, as well as congressional leadership, have not yet proposed during this election season the significant changes to the American health care system that we’ve seen in past elections – including pledges to repeal and replace the Affordable Care Act or transition the private insurance market to a “Medicare for All” single-payer framework. Nevertheless, the next administration and Congress will bring changes that may transform the landscape of American health care.


This pre-election analysis from ML Strategies explores the different health care priorities that may be pursued by the next administration and 119th Congress.


Continued

Upcoming Meetings of

The President's Committee for People with Intellectual Disabilities (PCPID)


September 26, 2024 9am - 4 pm Eastern

September 27, 2024 9 am - 3 pm Eastern


The President's Committee for People with Intellectual Disabilities (PCPID) will host a meeting for its members to discuss the 2024 PCPID Report. The meetings will be held in-person in Washington, D.C. and on Zoom. All PCPID meetings, in any format, are open to the public. Members of the public can join in person or virtually. This meeting will be conducted in presentation and discussion format. The PCPID is overseen by members of the Administration for Community Living (ACL), and all meetings are facilitated by the ACL.


This year's report will focus on Home and Community Based Services (HCBS) and discuss emerging issues facing people with intellectual disabilities who receive services through the HCBS channel of Medicaid.


Once again, people with I/DD or severe autism who require ICF services or choose to work in 14(c) programs will not be included in the findings and recommendations of this committee.


We urge our members to sign up for the virtual meetings and make your presence known. Remember:


"If you don't have a seat at the table, you are probably on the menu."


Please click here to register for the Zoom meetings and to submit comments to the PCPID

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 share this offer with your loved one's

Direct Support Professionals!


VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!


Our loved ones' caregivers are essential to their health, safety, and happiness.

In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.


We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.


If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at


info@vor.net


with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

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