November 15, 2024

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VOR's Weekly News Update

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run by families of people with I/DD and autism

for families of people with I/DD and autism.

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VOR & You:

VOR's

Early Giving Tuesday

November 26, 2024


Once again, we are celebrating holiday traditions and the joys of giving with VOR's annual Early Giving Tuesday.


Our fundraising this year has already been set back by the election. We couldn't compete with all those text messages asking for donations for candidates from both parties, Lord-knows-how-many good causes, and people you've never heard of running for offices in states you've never even visited.


We're asking our members to put a little something into our hat a bit early, the Tuesday before Thanksgiving, to make room in your budget for VOR before the frenzied spending of Black Friday, Small Business Saturday, Send-it-all-back Sunday, and Cyber Monday, also known as Order-all-new-stuff-online Day.


All kidding aside, we do rely on our members' generosity in order to continue our advocacy, and Tuesday, November 26th would be a fine day to make a donation. If you prefer to wait until December 3, Regular-Giving-Tuesday, that would be okay, too.


Please click here to donate

The Incoming Administration:

We continue to examine the challenges and opportunities that families of people with I/DD and autism will face as the second Trump presidency begins to take form.


As cabinet picks are being announced, news outlets and national advocacy groups are speculating as to what may or may not come to pass in the coming days.


It would appear that the greatest challenge we may face could be cuts or caps to Medicaid, especially to programs that benefit people with Intellectual and Developmental Disabilities and autism (ID/A).


One area where we expect to see great upheaval is in the Department of Health and Human Services. While many of our families would welcome a move away from the one-size-fits-all policies that developed since the Obama Administration created the Administration for Community Living, which effectively marginalized those with the most severe ID/A, no one wants to see any ID/A families lose services.


There has also been a lot of conjecture about President Trumps assertion that he will eliminate the Department of Education, and how that might affect children in Special Ed classes.


On a positive note, we do expect that the movement to eliminate 14(c) programs will be weakened with the make-up of the 119th Congress and the priorities of the Trump Administration. Yet, we would rather achieve that result through people understanding the value of these programs, not through political turnover.


Again, what we present here is not intended to take sides politically. Our concern is, and has always been, helping families of people with intellectual disabilities navigate a complex and ever-changing system, in order to make informed choices for the well-being of their loved ones.

Medicaid:

Deep cuts in health spending likely under second Trump administration, experts say

By Joseph Burns, Association of Health Care Journalists, November 11, 2024


During a second Trump administration, president-elect Donald Trump and a Republican-backed Congress are expected to limit abortion access and cut spending for Medicaid and the Affordable Care Act (ACA), health policy experts from the nonpartisan KFF said Friday.


On a Zoom call, the topic was “What a Second Trump Administration May Mean for Health Care.” Here’s a recording and transcript


Keep in mind that Larry Levitt, KFF’s executive vice president for health policy, warned, “There’s a lot of tea-leaf reading in trying to anticipate what might happen.”


“We know there will be a big debate coming on taxes, and I fully expect health care to be a big part of that debate,” he added. “Trump has said Medicare, Social Security and Defense (Department) cuts are off the table with Republicans looking for spending reductions to help pay for tax cuts.”


The election represented a “fork in the road for health policy,” Levitt added. That means more emphasis on deregulation than under the Biden administration, and for health care, less federal spending and less transparency, he said.


“That means the math is inescapable,” Levitt noted, explaining that cuts are coming in spending for Medicaid and the ACA. “Medicaid is the next biggest chunk of money after those other programs, and if there is pressure to cut spending to finance tax cuts, then Medicaid will have a big target.”


In the past, Trump, conservative groups and Republicans in Congress have endorsed plans to cut Medicaid spending by making block grants to states or per-capita caps or by slashing federal matching payments for the ACA and Medicaid expansion, Levitt commented.


On the issue of Medicaid spending, Levitt said, there are questions about whether cuts will come in the form of reductions in federal matching payments to the 40 states that have expanded enrollment in Medicaid or for the 10 states that have not expanded Medicaid, including Georgia. If Trump or Congresses used block grants or per-capita caps to fund Medicaid, every state would be affected, he explained. In turn, every state could cut Medicaid spending, leading to reductions in coverage and benefits, he added. Both block grants (meaning a set amount for each state) and per-capita caps (meaning a set amount for each enrollee), Trump and Congress could limit federal Medicaid spending.


Robin Rudowitz, KFF’s vice president and director of the Program on Medicaid and the Uninsured, commented that changes in spending for the ACA also could affect whether the remaining 10 states expand Medicaid and would affect the waivers that some states, such as Georgia, use to enroll residents in Medicaid without expanding enrollment more broadly.


Read the full article here

What Trump’s 2024 Victory Means for Medicaid 

By Robin Rudowitz, KFF Quick Takes, November 14, 2024


With Donald Trump returning to the presidency and with a Republican controlled Congress the future of Medicaid is uncertain. While Medicaid did not receive a lot of attention directly during the campaign, if Social Security and Medicare cuts are largely off the table, Medicaid spending reductions are left as a likely source of funding to help pay for tax cuts. Trump has previously supported policies to repeal or weaken the Affordable Care Act (ACA), as well as cap and reduce Medicaid financing; however, these proposals were not able to pass a divided Congress in 2017. With support of Congress, Trump could enact foundational changes to the program that serves 1 in 5 Americans and is the primary payer for long-term care in in the United States. Proposals from conservative groups include converting Medicaid into a block grant to states, capping federal funding on a per capita basis, and reducing federal matching funds for ACA Medicaid expansion enrollees.


Potential legislative changes to Medicaid are in addition to changes the Trump administration could make to the program through executive action, including work requirements.


Here are 3 things to keep in mind as changes to Medicaid are considered:


Changes to Medicaid could have major implications for people.

Overall Medicaid covers 1 in 5 people in the United States, but Medicaid has a key role for certain groups. In 2023, Medicaid covered nearly 4 in 10 children, 8 in 10 children in poverty, 1 in 6 adults, and 6 in 10 nonelderly adults in poverty. Medicaid covers 44% of nonelderly, noninstitutionalized adults with disabilities. Medicaid also covers 41% of all births in the United States, nearly half of children with special health care needs, 5 in 8 nursing home residents, 23% of non-elderly adults with any mental illness, and 40% of non-elderly adults with HIV. Medicaid pays Medicare premiums and often provides wraparound coverage for services not covered by Medicare (like most long-term services and supports) for nearly 1 in 5 Medicare beneficiaries (13 million). 


Federal cuts to Medicaid could have major implications for states.

Medicaid financing is complex. States are guaranteed federal matching dollars without a cap for qualified services provided to eligible enrollees. The match rate (known as the federal medical assistance percentage or “FMAP”) varies across states, some services and populations, and sometimes is adjusted during economic downturns. Because Medicaid is administered by states within broad federal rules, Medicaid programs and spending vary across states. Spending depends on multiple factors, including the number and mix of enrollees, their use of health care and long-term services and supports, the prices of Medicaid services, and state policy choices about benefits and provider payment rates. In 2023, the federal government paid 69% ($606 billion) of the total costs of Medicaid ($880 billion). While children and adults make up most of the enrollees, more than half of spending is for people who qualify on the basis of age or disability.


Proposed changes to Medicaid could come up against public support for the program.

Significant cuts to Medicaid could also run up against public opinion. Two-thirds of adults in the U.S. say they have had some connection to the Medicaid program and three-fourths of the public have favorable views of the program (with majorities across political parties). In addition, the majority of Medicaid enrollees and the public prefer to keep Medicaid as it is today with the federal government guaranteeing coverage for low-income people, setting standards for who states cover and what benefits people get, and matching state Medicaid spending as the number of people on the program goes up or down.


Read the full article here

HHS:

RFK Jr. Selected to Lead HHS

By Kristina Flore, Medpage Today, November 14, 2024


Donald Trump has nominated Robert F. Kennedy Jr. to be secretary of the Department of Health and Human Services, the president-elect announced.


The move is expected to send a jolt through the medical and public health community, which has long criticized Kennedy's anti-vaccine activism.


During a campaign rally at Madison Square Garden in New York City in October, Trump talked about letting Kennedy "go wild" on health, medicine, and food.


"For too long, Americans have been crushed by the industrial food complex and drug companies who have engaged in deception, misinformation, and disinformation when it comes to public health," Trump said in a social media post announcing his pick of Kennedy.


"The safety and health of all Americans is the most important role of any administration, and HHS will play a big role in helping ensure that everybody will be protected from harmful chemicals, pollutants, pesticides, pharmaceutical products, and food additives that have contributed to the overwhelming health crisis in this country," Trump said.


Think-tank experts interviewed by MedPage Today in the run-up to the election essentially said it was unlikely Kennedy would pull off that kind of demolition job, but that they also said they've come to expect the unexpected from a Trump administration.


Kennedy has made no secret of his disdain for the agencies under the HHS Secretary's purview. In a video for the Make America Health Again (MAHA) initiative that he leads, Kennedy said his "big priority will be to clean up the public health agencies like CDC, NIH, FDA, and U.S. Department of Agriculture."


"Those agencies have become sock puppets for the industries they're supposed to regulate," Kennedy said in the video. "President Trump and I are going to replace the corrupt industry-captured officials with honest public servants."


Continued

Here Are the Agencies Robert F. Kennedy Jr. Would Oversee as H.H.S. Secretary

By Hank Sanders, Sara Ruberg, and Christina Jewett, The New York Times, November 14, 2024


When President-elect Donald J. Trump announced on Thursday that he would nominate Robert F. Kennedy Jr. to lead the Department of Health and Human Services, questions immediately arose about how the department would change if it were to be led by someone who has expressed skepticism toward vaccines and a resistance to public health measures.


If confirmed, Mr. Kennedy would run a department whose divisions manage billions of dollars and regulate the nation’s food, medications, vaccines and medical treatments.


The H.H.S. oversees 13 divisions that administer services and conduct research through various agencies and offices, including:


Centers for Disease Control and Prevention

National Institutes of Health (which includes the National Institute on Mental Health)

Centers for Medicare and Medicaid Services

Administration for Children and Families

Administration for Community Living

Agency for Healthcare Research and Quality

Health Resources and Services Administration

Substance Abuse and Mental Health Services Administration


Read the full article here

Kennedy’s F.D.A. Wish List: Raw Milk, Stem Cells, Heavy Metals

By Christina Jewett, The New York Times, updated on November 14, 2024


Excerpt:


Mr. Kennedy has a history of promoting the possible benefits of chelation, which is an accepted therapy for removing heavy metals from the blood after a serious exposure, but not for treating autism.

A blog entry posted by the Children’s Health Defense, a nonprofit founded by Mr. Kennedy, claims that “many cases of autism” are actually cases of mercury poisoning brought on by a preservative found in some vaccines. The post, which says it was written in 2000 and posted in 2017, went on to note the promise of chelating agents — chemicals that remove toxic metals from the body — as a potential treatment for autism. A 2015 book edited by Mr. Kennedy that focused on widely debunked theories about vaccines and autism notes “evidence of chelation’s benefits” from a handful of small studies.


Doctors do use chelating agents to treat some conditions, like lead poisoning, said Dr. Jeffrey Brent, a toxicologist at the University of Colorado School of Medicine. But he said he doubted that “any legitimate physician” believed that chelation was an appropriate treatment for autism.


Chelation can also be dangerous. A 5-year-old boy died in 2005 from cardiac arrest after a doctor in western Pennsylvania tried to treat his autism with chelation.


“It was a huge problem and there are people out there that are pushing it,” Dr. Brent said. “I’m sure they feel emboldened right now.”


Yet, several companies have marketed what they described as chelation products for a number of uses not approved by the F.D.A., including treating autism, prompting the agency to send warning letters to those organizations in 2010.


Mr. Kennedy underwent chelation therapy himself after blood tests showed that his mercury levels were elevated. He attributed the high levels to his preference for eating tuna, which is known for containing mercury.


Read the full article here

From our friend Jill Escher at the National Council on Severe Autism:


Opinion: Trump, RFK, and the Autism Dilemma

Kennedy and the president-elect are asking why more kids like mine are disabled by autism. They have the power to find real answers—and it’s not due to vaccines.

By Jill Escher, The Free Press, November 15, 2024


Whatever you may think of Donald Trump and Robert F. Kennedy Jr., let’s give them credit for being essentially the only politicians to invoke an alarming and shadowy topic few want to acknowledge: the crisis of America’s rising rates of autism.


And with the news that Kennedy is going to be Trump’s nominee to head the Department of Health and Human Services, there will be an opportunity for them to act upon their concern. But the peril is that, given Trump and Kennedy’s history of blaming vaccines, they might continue down this discredited path. 

The once-rare diagnosis of autism now consumes the lives of ever-growing numbers of U.S. families—including mine. But autism has become so mired in controversy that wary politicians tend to look away. When comedian Dave Smith recently asked this unfunny question about Trump and Kennedy—“Why are they the only ones who are talking about this?”—his remarks on Instagram were viewed 3.7 million times. 


This crisis urgently needs to be addressed, not just because children with autism and their families need research, hope, and help but because all of society is affected by a growing cohort of young adults who will require lifetime care. The numbers are astonishing and irrefutable. 


An autism diagnosis was extremely rare in the 1960s to early 1980s, in the range of 0.01 to 0.05 percent of all children. Then, in the early 1990s, clinics and schools began to notice an inexplicable surge of cases. A 1996 Centers for Disease Control and Prevention surveillance conducted in response to national concerns found a prevalence of 0.42 percent of 8-year-old children in the Atlanta area. Starting in 2000, the CDC undertook rigorous multisite studies using consistent methodology. It first found that 0.67 percent of 8-year-olds had autism, followed by steady increases thereafter: 1.13 percent in 2008, 1.85 percent in 2016, and 2.76 percent in 2020. 


The latest U.S. federal agency surveys now identify more than 3 percent of children ages 3 to 17 as having autism—at least a 60-fold increase from 50 years ago. And some studies report even higher rates: For example 4.6 percent of 4-year-olds in San Diego County in 2020.  


No matter the magnitude of each successive increase, the media often issues the reassurance that the rise is not real, but a function of more recognition and of broader definitions of the condition. But Kennedy, who is 70 years old, made a salient observation last year in an interview: “I have never in my life seen a man my age with full-blown autism, not once. Where are these men?” 


The truth is, not a single study has identified them in any appreciable numbers. For example, the California Department of Developmental Services, well-known for its robust data on the more disabling forms of autism, counts a mere 60 cases of autism in residents born in 1954—Kennedy’s birth year. Compare that to 5,163 cases identified in kids born in 2010. It’s important to note that this system has not expanded its eligibility criteria and, in fact, enacted more stringent requirements in 2003. It has seen its overall autism caseload soar from about 3,200 in 1989 to about 190,000 today.


What I appreciate about Trump and Kennedy is their public insistence that indeed there is something to see here, something real, something deserving of our utmost concern. 


I know, because I have two profoundly autistic children who are now young adults. My daughter Sophie is 18 and lives with my husband and me. Our son Jonathan, 25, lives a few minutes away and is aided by us and paid staff. They cannot talk, read, write, or follow even simple directions, like how to draw a smiley face, change their clothes, prepare food, or use a television.


Autism is on a spectrum, and I accept that some highly verbal but socially awkward children who might have been called “quirky” in another era may be diagnosed as autistic today. But there also is no question that the population of substantially disabled children like mine, children whose problems could not have been overlooked by families and schools, has been surging. Even when one restricts autism to its most stringent definition, called profound autism, with IQs under 50 and minimal language, one still sees prevalence nearly doubling from 0.27 to 0.46 percent of 8-year-olds in the U.S. between just 2000 and 2016, according to a CDC study. 


While RFK Jr. and Trump are right to say unraveling the causes of autism should be a public health priority for a second Trump administration, they are deeply wrong to invoke the discredited idea that childhood vaccines could be a culprit. As explained by Dr. Richard Besser, the former acting director of the CDC, the specter of reduced vaccination rates would pose an intolerable risk to public health, especially the health of children. It would also do nothing—nothing—to reduce the incidence of autism.

How do we know vaccines cannot be causing the autism increase? Let me count the ways:  


  • We know that a hallmark of autism is dysregulation of brain development starting in the prenatal period. Childhood immunizations simply cannot explain what goes wrong during gestation. 
  • There is not a single ingredient in vaccines that can cause childhood brain development to go awry, and no animal study shows links between vaccines and the abnormal brain development seen in autism. 
  • There is no plausible reason vaccines could explain autism’s strong heritability (e.g., sharply increased incidence among siblings), or its strong male-to-female ratio of about 4 to 1. 
  • The vaccine schedule cannot possibly explain the steadily accelerating rates over time. 
  • And most importantly, every epidemiological study on the topic has confirmed zero association between vaccination status and the development of autism. 


Continued



Special Education:

How Trump's Plan to Close the Department of Education Threatens Special Education

By Antonio L.. Ellis, Diverse Education, November 14, 2024


Donald J. Trump's proposal to close the Department of Education represents a dramatic shift that could have devastating consequences for special education services in the United States. The Department of Education plays a pivotal role in ensuring that students with disabilities receive the support and resources they need, and its potential elimination raises serious concerns about how special education will be impacted.


One of the primary functions of the Department of Education is to enforce the Individuals with Disabilities Education Act (IDEA), a federal law that guarantees students with disabilities the right to a free and appropriate public education. This law ensures that children with disabilities have access to individualized education programs (IEPs), specialized instruction, and necessary accommodations. Without the oversight of the Department of Education, there is a legitimate fear that states and school districts could fail to meet these obligations, leading to significant disparities in the quality and accessibility of special education services across the country. IDEA’s implementation requires rigorous monitoring and enforcement, and the absence of a centralized federal authority would make it far more difficult to hold states accountable.


Federal oversight is critical because it ensures a level of consistency in how special education is administered. The Department of Education provides guidance and resources to help schools comply with IDEA and address the needs of students with disabilities. If Trump’s plan were to be enacted, enforcement of these laws could become fragmented, and the responsibility would likely fall to individual states, many of which are already struggling to adequately fund education. This decentralization could result in a patchwork system where a child’s access to quality special education services is determined by the state they live in, exacerbating existing inequities. Wealthier states might be able to uphold standards, while underfunded states could be forced to make cuts, leaving vulnerable students without essential support.


Funding is another critical aspect of special education that could be jeopardized if the Department of Education is eliminated. The federal government currently provides billions of dollars in funding for special education programs, helping to offset the significant costs associated with individualized support and specialized staff. This funding is crucial for many school districts, particularly those in low-income areas, where resources are already stretched thin. Without a federal agency to allocate and manage these funds, there is a real risk that the financial burden would fall disproportionately on states and local governments. As a result, schools could face budget shortfalls that might force them to increase class sizes, cut specialized programs, or lay off support staff, all of which would be detrimental to students with disabilities.


The Department of Education also serves as an advocate for students with disabilities and their families, providing a framework for parents to challenge schools when their children are not receiving appropriate services. If the department is disbanded, parents may find it much more difficult to navigate the system and advocate for their children’s rights. The bureaucratic protections and resources that currently exist to support families could be weakened or disappear entirely, creating barriers for those who need them the most. Families who have already fought hard for their children’s education could be left without recourse, forced to rely on state systems that may not have the same level of commitment or resources to uphold their children’s educational rights.


Trump’s plan to close the Department of Education poses a grave threat to the well-being of students with disabilities. The department’s role in enforcing IDEA, providing consistent funding, and advocating for the rights of students is essential to maintaining the quality of special education services in the United States. Eliminating this federal oversight risks creating a system of inequity, where only some students receive the education they deserve, depending on their state’s resources and priorities. As our nation continues to strive for educational equity, the dissolution of the Department of Education would be a step backward, undermining decades of progress in the fight for inclusive and fair educational opportunities for all students.


Read the full article here

What does the Department of Education do?

By the USA Facts Team, USA Facts .org, November 14, 2025


The Department of Education (DOE) is a relatively new federal agency – it was founded on May 4, 1980 when legislation split the old Department of Health, Education, and Welfare into two new departments: Education, and Health and Human Services.


The DOE is has received 4.0% of all federal funding in 2024, totaling $268.35 billion. That makes it the sixth highest-funded federal agency.


It’s also the smallest of any cabinet-level department, employing about 4,100 full-time employees in 2023. The next closest was Housing and Urban Development with around 8,100 full-time employees in 2023.


According to the Department of Education, education is primarily a local and state responsibility rather than a federal one. Elementary and secondary education are mostly funded by local governments, while state governments support higher education, per the Census Bureau’s Annual Survey of State and Local Government Finances.


Continued

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This Week's News:

National program helped 27 states develop background check processes for long-term care

By Kimberly Bonvissuto, McKnights Senior Living, November 11, 2024


A national background check program was so successful in helping states develop or enhance systems for conducting background checks of prospective long-term care employees that more than a quarter million prospective employees were disqualified from working in the sector, even after funding for the program ran out, according to a final report on the program.


The US Department of Health and Human Services Office of Inspector General released a final analysis on Thursday of the National Background Check Program for long-term care providers. The agency reported that 29 states participated in the program between 2010 and 2024 and that the program helped 27 of them develop programs to identify efficient, effective and economical procedures for conducting background checks on prospective long-term care employees.


During the National Background Check Program, states disqualified at least 106,000 individuals with criminal convictions from employment. Disqualifying criminal convictions included offenses of murder, assault, battery, robbery, theft, fraud and forgery. 


States were eligible to receive up to $3 million in federal funding for three years to develop and design background check systems. The act required states to provide matching funds and to include several types of background checks in their programs, including enabling a search of state databases and abuse registries, state criminal history records, a fingerprint-based search of FBI criminal history reports, records from any relevant criminal proceedings and continued monitoring of status changes to previous background checks. 


Even after funding for the program ended, 17 states continued to use the systems built during the program, disqualifying an additional 254,000 potential long-term care employees from employment. 


Although program funding ended in September, some of the participating states are working on new ways to continue to fund the National Background Check Program Forum, a quarterly web-based meeting and annual conferences providing ways for states to collaborate on issues that arise.


Read the full article here

Oklahoma Human Services reduces disability services waitlist from 13 years to two 

By Journal Record Staff, The Journal Record, November 14, 2024


Oklahoma Human Services reported significant progress in reducing the state’s Developmental Disabilities Services waitlist from 13 years to two, with the release of Cohort 7 data in October.

Since the Oklahoma Legislature’s historic 2022 investment, which organized over 5,000 applicants into cohorts based on waitlist entry dates, more than 2,000 families have been approved for or are currently receiving services.


In fiscal year 2025, the Legislature allocated an additional $3 million to process new applications received from May 2022 to October 2023, establishing two more cohorts. Applications for Cohorts 8 and 9 will be processed chronologically by application date.

“Thanks to these additional appropriated funds, we’ll be able to serve even more Oklahoma families as we make strides toward becoming a no-wait state,” said DDS Division Director Beth Scrutchins. “Previously, children ultimately waited until adulthood to be connected to services because of the 13-year waitlist. But now, we’re able to process applications quickly enough that any qualified age can receive support, improving the quality of life for the whole family.”


Oklahoma Human Services is also taking steps to address the needs of Oklahomans with developmental disabilities with a provider rate increase. 


Read the full article here

Oklahoma families with children who have disabilities talk DDS's 13-year waitlist ending

By Kilee Thomas, KOCO News, November 14, 2024


Thousands of Oklahoma families waited more than a decade to get help for their children with developmental disabilities.


On Wednesday, the Department of Human Services said the 13-year waitlist is over and the state is helping new families.


"It's just been a blessing," Monique Sitton, whose son Josiah was on the waitlist, said.

Josiah was one of more than 5,000 Oklahomans who joined the Developmental Disabilities Services' waitlist. Like the others, he waited 13 years for care.


"I kinda forgot about it. I just kinda went on with life and all the challenges you know with autism," Sitton said.


This year, Josiah's mom finally got the call. Now, she's employed as his caretaker and helps Josiah with everyday tasks like doing laundry and finding him a job.


"I became his home-trained specialist. So, I felt like, 'Hey, mom is the best sometimes,'" Sitton said. 


For more than half of the families who joined the waitlist, though, help isn't coming. According to the Department of Human Services, they couldn't connect with a quarter of the families while others declined services or refused to cooperate.


"My brother has been mentally disabled his entire life, and growing up, it was very rough on my parents because back in the 90s and 2000s there was not any kind of resources or help for that," Kianna Archer said.


Archer told KOCO 5 that her little brother Frankie was one of the 5,000 waiting for care, but the call didn't come until two years ago when he was 27 years old. 


"DHS made the promise of 'Well, we have all these resources and help. We'll just get you and the waitlist.' And the relief never came," Archer said. "My parents basically struggled our entire teenage years until Frankie turned 18, and they were able to place him in a long-term care facility. And that's where he's been ever since."


Frankie's family gave up his spot to help another family. 


Continued

Virginia Medicaid program faces $632M hole

By Michael Martz, Richmond Times-Dispatch via Daily Progress, November 9, 2024


Virginia’s Medicaid program faces a budget shortfall of almost $632 million over two years, as Gov. Glenn Youngkin says he is preparing another package of tax cuts for the Democrat-controlled General Assembly to consider next month.


The Department of Medical Assistance Services submitted its annual forecast to assembly budget committees in the last week of October. It shows a shortfall of $337 million the first year and $295 million in the second, which is unusual in the year after the state adopts its two-year budget.


The shortfall includes $160 million in bills that the state carried over from the last fiscal year after the process of “unwinding” Medicaid rolls from the COVID-19 pandemic resulted in delays that drove up costs in the fiscal year that ended on June 30.


Those costs include the repayment of $41 million in pharmacy rebates the state had mistakenly deposited in the general fund instead of sending to the U.S. Centers for Medicare and Medicaid Services and a state assessment fund to help cover hospital costs for Medicaid patients.


“The adjustments in the Medicaid forecast are driven by one-time costs associated with post-pandemic redetermination, increases in services to the most vulnerable enrollees, rate increases mandated by the General Assembly, and a reduction in federal matching funds because Virginia’s personal median income has grown significantly in the last three years,” Virginia Secretary of Health and Human Resources Janet Kelly said in a statement. “The governor’s budget will reflect these changes to the forecast and the administration will continue to prioritize oversight to ensure taxpayer dollars are used efficiently.”


The financial shortfall comes on top of the $95 million that the assembly included in the budget last spring to cover a portion of higher costs from delays in the Medicaid re-enrollment process.


Continued

California - Valley Latinos lose out on state’s disability services. These initiatives bridge the gap

By Melissa Montalvo, The Fresno Bee, November 8, 2024


Araceli Ramirez felt lost when her 5-year-old son Abraham was diagnosed with autism two years ago. The Modesto-area mother of four didn’t know much about the disorder or how to get her son help.


“I felt like, ‘What do I do now? Where are the resources?’” Ramirez said in an interview. “Estaba desesperada,” she said. “I was at my wit’s end.”


It wasn’t until Ramirez discovered a nonprofit called Escuchen Mi Voz, which means listen to my voice, that she got the services her son needed. A community health worker with the nonprofit helped her with the “complicated, difficult and tedious” processes to enroll her son in the therapy and recreational classes he’s entitled to under state law.


“I was unaware of all that,” she said.


Ramirez’s situation is not uncommon. Rather, it is emblematic of Latinos’ disproportionate access to disability services statewide.


Nonprofits like Escuchen Mi Voz are among the dozens of state grant-funded initiatives that try to bridge these gaps, sometimes in inventive ways, like dispatching mobile offices to rural Central Valley communities to assess and enroll people who require services.


Continued

Florida - First affordable housing project for Intellectual and Developmental Disabilities in Palm Beach County

By Nathalie Pozo, WPBF News, November 14, 2024


The first affordable housing project for adults with Intellectual and Developmental Disabilities, or IDD, is coming to Palm Beach County. 


Video available here


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VOR SUPPORTS:



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


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

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


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


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

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


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


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

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


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


H.R.670 - Think Differently Database Act

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


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

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


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

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


H.R.3380 - HEADs UP Act of 2023

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


VOR OPPOSES:


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


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

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


S. 1148 - The Guardianship Bill of Rights

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


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

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



VOR HAS SIGNIFICANT CONCERNS WITH:


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

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

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


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

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


S.3118 - The HCBS Relief Act of 2023

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



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



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