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VOR's Weekly News Update
VOR is a national non-profit organization
run by families of people with I/DD and autism
for families of people with I/DD and autism.
| | National Core Indicators - IDD Report 2025: | |
New Report Spotlights Families' Voices on State Developmental Disability (DD) Service Systems Nationwide
Nearly 38,000 Families Share What’s Working, and What’s Still Missing, in State-Funded DD Supports
EIN Presswire, August 4, 2025
National Core Indicators – Intellectual and Developmental Disabilities® (NCI-IDD®), a collaboration between Human Services Research Institute (HSRI) and the National Association of State Directors of Developmental Disabilities Services (NASDDDS), announces the release of the 2023-24 Family Survey National Reports. Data were gathered from 37,888 family members of children and adults receiving state-funded DD services across 18 states. NCI data can be used to examine the impact of Medicaid-funded disability services on the lives of those receiving services and their families.
The NCI-IDD Family Surveys capture the perspectives of those who know the service systems best: families of people with intellectual and developmental disabilities (IDD). The national reports include results from three distinct surveys:
- Family Guardian Survey (FGS): For families of adults with IDD who live outside the family home
- Adult Family Survey (AFS): For families of adults with IDD who live at home
- Child Family Survey (CFS): For families of children with IDD who live at home
Together, these surveys provide a detailed, family-centered perspective on access, satisfaction, and the quality of state-funded developmental disability services.
FAMILIES SEE THE VALUE IN SERVICES, BUT ACCESS REMAINS UNEVEN
Across all three surveys, families overwhelmingly feel that services help their loved ones with IDD live a good life.
- More than 90% of respondents agreed with this sentiment, regardless of survey type. However, not all families are getting the support they need:
- 88% of Family Guardian Survey respondents say their family gets needed services
- 73% of Adult Family Survey respondents say the same
- 64% of Child Family Survey respondents report having adequate support
ROOM FOR IMPROVEMENT IN SATISFACTION
Although services are seen as helpful, fewer than half of respondents said they are always satisfied with the supports they receive.
The reports also provide detailed insights on other essential areas, including:
- Access to planning and service information
- Choice and control in support decisions
- Workforce challenges and community integration
- Health, safety, and overall wellbeing
ACCESS THE REPORTS:
View the full 2023–2024 NCI-IDD Family Survey National Reports.
Read the full article here
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Pay raises can trigger ‘benefits cliff’ for direct care workers, report says
By Kathleen Steele Gaivin, McKnight's Senior Living, August 5, 2025
Even a modest increase in wages for direct care workers (personal care aides, nursing assistants and home health aides) can drive them to a “benefits cliff,” leaving them worse off than before, according to a new report from PHI, LeadingAge Virginia and its foundation, PositiveAge.
“To make ends meet, they often depend on public benefit programs to survive,” according to the report. “Because of strict program rules, modest income gains can reduce or eliminate access to these public benefits and increase workers’ tax burden, offsetting income increases or erasing them altogether — a situation known as a ‘benefits cliff.’”
A median share of 35% to 37% of each hypothetical $5,000 increase in income is lost to reduced benefits and taxes statewide in Virginia, according to the research. Nine percent of workers would experience a benefits cliff with a $5,000 pay increase, with an additional 3% of workers being affected after a second $5,000 pay increase. After three $5,000 pay raises, up to 16% of Virginia’s direct care workers experience at least one benefits cliff.
“Such situations can exacerbate economic instability and, combined with other factors, increase the likelihood that workers exit the profession altogether, at a time when their services are in extremely high demand,” the report authors wrote.
Medicaid is the primary driver of benefit cliffs, followed by Supplemental Nutrition Assistance Program, school meal programs and childcare subsidies, according to LeadingAge Virginia.
In light of looming cuts to Medicaid and SNAP under the federal budget reconciliation bill that President Trump signed into law July 4, LeadingAge Virginia recommends several state policy changes:
- Evaluating and adjusting eligibility thresholds for programs such as Medicaid and Children’s Health Insurance Program.
- Offering transitional cash assistance to bridge the gap for benefit losses.
- Expanding benefits coaching to help workers plan and navigate complex rules to avoid cliffs.
“In the immediate future, the state may need to focus on preserving progress to date, as federal policymakers have enacted significant and harmful changes to SNAP, Medicaid, and the Affordable Care Act insurance marketplace,” according to the report.
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Foreign-Born Workers Made Up Half The Increase In The Direct Care Workforce In Home And Community Settings, 2012–22
By Britainy Barnes and David C. Grabowski, Health Affairs, August , 2025
Abstract
Persistent shortages of workers providing long-term services and supports (LTSS) for more than a dozen years have led to increased reliance on foreign-born workers to meet the growing demand. However, there is a dearth of empirical data on long-term changes in the composition of the direct care workforce by nativity status and care setting. Using data from the American Community Survey (2012–22), we examined the extent to which foreign-born workers contributed to LTSS workforce growth and how their participation was distributed across care settings. We found that foreign-born direct care workers have increasingly filled workforce gaps, particularly in the home and community-based services (HCBS) sector.
The HCBS workforce grew by more than 24 percent during the period 2012–22, while the institutional workforce declined by 23 percent; this decline was primarily due to the exodus of native-born workers. Foreign-born workers accounted for approximately half of the increase in the direct care workforce in HCBS settings during this period.
To address continued workforce shortages in LTSS and meet the demand for HCBS, policy makers should consider immigration reforms to support a sustainable supply of foreign-born workers, investments in training and career pathways, and improvements in job quality through higher wages and opportunities for career advancement.
Link to the article here.
(NOTE: The full article is only available for purchase on this site)
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Op-Ed: New Princeton study marks a breakthrough in autism research
By Dr. Suzanne Buchanan and Cassidy Grom, New Jersey Spotlight News, August 6, 2025
A new study released in Nature Genetics last month made promising connections between the symptoms of individuals with autism and their genetic profiles.
Autism affects about one in 31 children in the United States and one in 29 in New Jersey. With further research along these lines, we may eventually be able to identify more genetic causes of autism and customize treatments based on both an individual’s symptoms and their genetic profile.
As leaders of Autism New Jersey, a nonprofit that helps families navigate the world of autism services, this study is a very welcome development. Our helpline fields more than 2,000 calls a year, and the spectrum of needs we address is as wide as the autism spectrum itself.
On a given day, we may speak to an autistic young adult who is struggling to make friends and has anxiety in social settings, and to a mother whose autistic child is nonverbal, tends to run away and engages in severe challenging behavior that harms themselves and others. The first caller may need to connect with an autism-informed therapist or life coach. He may also benefit from inclusive recreational or job training programs where he can hone his social skills. The second caller may need to wear arm guards and extra padding when interacting with her child to protect herself and enroll her child in intensive applied behavior analysis therapy to reduce challenging behavior.
Both people are diagnosed with autism, but their symptoms are so vastly different that the diagnosis is almost clinically meaningless — doctors and therapists need to dive deeper into their behavior and developmental histories to know how to help.
Currently, we only have one diagnostic code for the whole spectrum, with three “levels of severity.” These levels are based only on the individual’s social-communication abilities and their restrictive and repetitive behavior. Yet, people with autism often also have intellectual disability, anxiety and what we call “severe challenging behavior,” where an individual harms themselves or others. These can impact an autistic individual’s day-to-day functioning just as much — and they deserve to be included in comprehensive autism research.
Having only one diagnostic code lumps individuals at every level into the same category, forcing researchers to create their own unique criteria for participants every time they design a study. This makes it incredibly difficult for other researchers to replicate those studies, detect patterns, and overall, slows scientific advancement.
Our organization and others in the autism community have long argued for an approach to autism that will create clear, standardized subgroups incorporating more symptoms.
The recent Princeton study is a leap in the right direction. The researchers analyzed more than 230 symptoms (including developmental, medical, behavioral and psychiatric) in over 5,000 autistic children. Dr. Olga Troyanskaya and her team then grouped them together based on similar symptoms, formalizing four different subtypes.
Creating these subtypes based on symptoms was helpful in and of itself. Other researchers can now use those same subtypes to create more targeted studies.
But the Princeton team took it a step further. They discovered that individuals within each subtype shared common genetic patterns with each other — a major breakthrough made possible by advanced computer modeling and large datasets.
Natalie Sauerwald, who co-led the research, compared it to trying to solve a jigsaw puzzle, only to realize there were multiple puzzles mixed together. Once they sorted the individuals into subtypes, they had a clearer view of their genetic patterns.
This advancement echoes medical history. For centuries, people thought a fever was a disease in and of itself, and it was not until the 18th century that doctors realized it was a common symptom, or a diagnostic clue, for many diseases. Our understanding of autism is undergoing a similar transformation. And as this study shows, all the core and related symptoms are pointing us to not one, but an untold number of underlying causes.
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New Genetic Study Reveals 4 Autism Subtypes
Each autism subtype has its own pattern of symptoms, development, and genetics.
By Alison Escalante, M.D., Psychology Today, August 5, 2025
Conversations about autism are often complicated by the fact that autism spectrum disorder (ASD) looks and feels different in different people. Because of this variability, we call autism a spectrum—a misleading term that suggests a linear progression from mild to severe.
That’s why a recent research paper published in Nature Genetics is so important: It advances our understanding by identifying four distinct subtypes of autism. Conducted by researchers at Princeton University and the Simons Foundation, the study linked each subtype to its own unique cluster of symptoms and genetic markers.
A Person-Centered Approach to Autism Research
Using a method called generative mixture modeling, researchers analyzed a large dataset of both behavioral and genetic information from more than 5,000 children in the SPARK autism cohort, funded by the Simons Foundation. This database included detailed tracking of each child’s individual symptoms.
The team called their approach “person-centered,” examining more than 230 traits in the children, including social behaviors, repetitive actions, and developmental milestones.
This approach flipped the script on autism research, which often looks for single genes linked to isolated symptoms. Instead, the researchers identified four distinct autism subtypes first, then examined the genetic patterns unique to each group.
4 Types of Autism
Autism is a difference in brain wiring that leads to a unique way of experiencing the world, but it is only diagnosed based on two parts of the autistic experience. Clinicians call these the “core autism traits,” which include social difficulties and restrictive or repetitive behaviors.
The study found that within those diagnosed with autism, there are four subtypes of autism with their own profiles beyond the core autism traits.
- Social and behavioral challenges: Including about 37 percent of the study participants, these autistic individuals typically reach developmental milestones at a pace similar to children without autism. They also demonstrate core autism traits of social challenges and repetitive behaviors, and are more likely to have attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder, anxiety, or depression, along with their autism.
- Mixed ASD with developmental delay: This group of children included roughly 19 percent of the study participants, and usually showed developmental delays in areas like walking or talking. However, they did not usually have anxiety, depression, or disruptive behaviors. The study authors used the word mixed because the way the children’s core autism traits presented varied.
- Moderate challenges: Representing about 34 percent of the study participants, the moderate challenges group generally reached developmental milestones at the same time as children without autism. They also demonstrated the core autism behaviors, but with less intensity than children in the other groups. This group typically did not have co-occurring psychiatric conditions.
- Broadly affected: The broadly affected group of children was the smallest, including about 10 percent of the study participants. These children had more extensive and extreme challenges, including developmental delays, social and communication difficulties, and repetitive behaviors. They also had co-occurring psychiatric conditions like anxiety, depression, and mood dysregulation.
It would be natural for autistic individuals and those who love them to try to fit themselves into one of these groups, but the study authors caution that there may be more types of autism beyond these. “It means we now have a data-driven framework that shows there are at least four—and that they are meaningful in both the clinic and the genome,” Avila Litman, a Ph.D. student at Princeton and co-lead author, explained in a press release.
The Genetics Behind the Autism Subtypes
Autism has long been known to be genetic, but existing research looking for single genes has made it hard to find all the genes related to autism. Up until now, standard genetic testing has revealed genes to explain autism in only about 20 percent of patients. By using a large cohort and defining autism subtypes, this study was able to map each of the four subtypes to their own genetic pattern.
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States face tough choices as federal Medicaid cuts loom
By Stephanie Akin, Arizona Capitol Times, August 5, 2025
State leaders will likely need to cut spending or move money from savings to manage Medicaid cuts and cost-shifts under the One Big Beautiful Bill Act, lawmakers said Monday at the National Conference of State Legislatures annual summit.
Nevada Gov. Joe Lombardo (R) has said he will not raise taxes. So lawmakers will need to consider cutting Medicaid spending, said Sen. Fabian Doñate (D), the deputy majority whip.
“You either cut eligibility that’s not mandatory, or you cut services. That becomes a challenge,” he told a packed room at the national gathering for state lawmakers and legislative staffers.
Lawmakers are still working to understand how sweeping changes in the new federal law will affect their Medicaid programs, one of the largest line items in state budgets.
The new law also comes amid uncertainty about how other federal actions such as tariffs, workforce cuts and immigration crackdowns will impact state revenues.
To balance Nevada’s Medicaid budget, Doñate said lawmakers could drop coverage for health care services considered luxuries.
Lawmakers likely will not be able to afford additional pay increases for doctors and other providers that treat Medicaid patients, he said. Many states have used Covid-era federal aid to increase Medicaid payment rates, which are below the rates Medicare and private insurance plans pay.
“I would say that provider enhancements are probably off the table now,” Doñate said.
Fast-growing Medicaid costs were already squeezing state budgets before Congress passed the Big Beautiful Bill.
It will impact state budgets in complex ways. In the short term, it will reduce tax revenues for some states while requiring all states to spend more to administer food stamp and Medicaid programs. In future years, states may need to partially fund food stamp benefits.
States will no longer be able to raise taxes on hospitals and other providers to help fund Medicaid services. States that have expanded Medicaid to cover more low-income adults will need to cut such taxes in future years, as well as begin administering work requirements and twice-yearly program eligibility checks.
Over the long term, the new eligibility rules could reduce the number of adults enrolled in Medicaid. But states must foot the bill for technology and staff needed to implement those changes.
Oklahoma lawmakers will need to cover new administrative costs in their Medicaid and food stamp programs, said Sen. John Haste (R), vice chair of the appropriations committee. He said lawmakers are also worried about how their rural hospitals will fare.
“All of those things added together could come up to a very big number,” Haste said. “We don’t know what that is.”
Oklahoma’s Republican-led legislature has focused for years on cutting taxes, in part to spur economic growth, Haste said. Raising taxes requires a vote of the people or three-fourths vote in the state House and Senate.
“That’s not going to be an option,” Haste said of raising taxes to cover new costs.
Utah has three rainy day funds to help protect its Medicaid program from fiscal risks, such as an economic downturn or loss of federal funding, said Jonathan Ball,
Utah’s legislative fiscal analyst. Utah leaders could use those savings to pay for I.T. upgrades needed to implement new Medicaid eligibility rules. “Because this is a one-time cost, I think it’s manageable,” Ball said.
He said he did not know how large the bill would be.
Ball said he was also worried about overhauling the state’s Medicaid payment system, which could lead to glitches.
Lawmakers there had to scramble to fill a $60 million budget hole in the final days of the legislative session this year after they discovered providers had been underpaid under a new Medicaid payment system.
“I’m not only worried about how to tackle the administrative cost of changing the system,” Ball said, “but what does that do to all the other components and how to avoid messing it up again.”
Read the full article here
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With Medicaid cuts, pain for hospitals isn’t imminent, but it’s coming
By Ron Southwick, Chief Healthcare Executive, August 5, 2025
While hospitals have lambasted the pending cuts in Medicaid that are part of the massive tax legislation President Trump signed last month, industry analysts say they won’t feel the pain right away.
That doesn’t mean some hospitals and health systems won’t be facing a difficult road. But analysts from Fitch Ratings say they have some time to prepare.
Much of the impact of the Medicaid cuts and new work requirements on healthy recipients won’t be felt for at least a couple of years. So hospitals may likely continue modest financial improvements over the course of 2025, and perhaps into 2026, says Mark Pascaris, senior director of Fitch Ratings.
The package calls for about $1 trillion in reduced spending for Medicaid over the next 10 years, according to an analysis from the Congressional Budget Office.
Assuming that estimate is accurate, Pascaris tells Chief Healthcare Executive®, “There's no way that that doesn't pose some kind of challenges for not-for-profit hospitals.”
Hospitals will likely start to see the impact of Medicaid cuts by 2027, when some of the cuts in funding and work requirements take effect.
“It’s not to say that there won't be any pressure points on Medicaid between now and then, but a lot of it, the bulk of it, won't be felt for a couple of years,” Pascaris says.
But he says, “This comes up in conversation with just about every health system we work with. You know, they're taking action today because they know what's coming.”
Hospitals have rebounded financially over the past couple of years, with Fitch upgrading the outlook for nonprofit hospitals from “deteriorating” to “neutral” in December 2024. Fitch had assigned a “deteriorating” outlook to nonprofit hospitals for more than two years.
But Fitch has also warned about the prospect of Medicaid cuts dealing a blow to hospitals. Fitch warned in March that Medicaid cuts could reverse the recovery of the nonprofit hospital sector.
Hospitals have warned that with Medicaid cuts over the coming years, health systems are going to be treating more people without the ability to pay, with many showing up in emergency departments for their health care. Nearly 12 million Americans could lose Medicaid coverage over the next decade, according to the Congressional Budget Office.
States may be forced to cut benefits or cover fewer people, or they’ll face the unpopular remedy of raising taxes to support their Medicaid programs. But with less support from Medicaid, hospitals have warned that they may have to reduce services or potentially close their doors.
Holloran says if the projections of up to nearly 12 million people losing coverage prove to be accurate, the system will see more patients “self pay, which we generally call no pay.”
“The reality is that's going to really smack the margins hard,” Holloran says. “You probably will see closures.”
Pascaris says he expects vulnerable hospitals to, at minimum, begin to scale back services, and adds that some may not survive.
“When you're in a period of stress, one of the tools you're going to look at are going to be staff cutbacks, are going to be a rationalization of services,” Pascaris says.
“Management teams will just look down the the roster of what it is they do and what is high value, in terms of margin generation, and in terms of mission priority, and those that are third or fourth tier might go,” he adds. “I mean, we will see some of that. Now in terms of hospital closures? Yeah, I think that that is a concern that we might see in parts of rural America and in the poorer parts of urban America.”
Most closures will likely involve hospitals that are already struggling, including those outside of Fitch’s rated universe, he adds.
“There's just a real public policy concern for a lot of policymakers in a lot of states, because if their rural hospitals close, and therefore there's just no alternative, comparable services to be offered to their constituents,” Pascaris says.
Read the full article here
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Commentary: Why Cuts to Medicaid Will Raise Everyone’s Health Care Costs
By Martha Santana-Chin, US News and World Report, August 4, 2025
What many Americans don’t realize about President Donald Trump's signature “One Big Beautiful Bill Act” is that it will raise the cost of health care not just for poor and working families, but for hospitals, insurance companies and, ultimately, for every American.
The new law slashes federal funding for health care by about $911 billion over the next 10 years by radically cutting access to Medicaid and health insurance under the Affordable Care Act. These are the largest cuts ever to health care in our nation’s history, and the price of these cuts will be passed on to consumers, care providers and insurance plans alike.
For the last 60 years, Medicaid has covered low-income Americans at a fraction of the cost of commercial health insurance. The passage of the ACA 15 years ago allowed millions more income-eligible workers to buy subsidized health insurance. Draconian cuts to both under the new law will result in 16 million Americans losing health coverage and losing access to lifesaving care, according to estimates by the nonpartisan Congressional Budget Office.
When families lose health coverage, they stop using preventive care and end up in emergency rooms, incurring higher costs that they can’t afford to pay. Hospitals and community clinics are forced to shift the cost of that uncompensated care onto commercial insurers. That added burden will raise insurance premiums for everyone, and the economy suffers.
Under the new law, by Dec. 31, 2026, all able-bodied adults aged 19-64 without dependents will have to demonstrate that they are engaged in work, community service, or a qualifying educational or training program for at least 80 hours per month. Work requirements are often framed as a commonsense measure to encourage employment and community contribution, but the reality is different.
When similar Medicaid work requirements were implemented in Arkansas and Georgia, too many people lost coverage not because they weren’t working, but because of red tape, confusing reporting systems or circumstances that made compliance nearly impossible. These requirements create administrative burdens and gaps in care for patients, especially for working parents, students, caregivers and people juggling multiple jobs to get by or who have fluctuating gig work.
Layered on top of this is the freeze and elimination of so-called provider taxes, which help states fund their portion of Medicaid, allowing them to access higher federal matching funds. Every state except Alaska relies on provider taxes to provide patients with critical care. These taxes are not fraud, waste or abuse as the Committee for a Responsible Federal Budget claims. And without them, states will face impossible choices: to cut provider payments that are already too low, to shrink eligibility and leave millions uninsured, or to dramatically reduce the types of care that are covered.
It’s time to roll up our collective sleeves and fight back, sharing the stories of the people who will suffer. In a best case scenario, we could push Congress to roll back some of the changes – or at least to require reasonable implementation of new rules to minimize harm.
That also means creatively empowering patients to play a more active role in their health and streamlining how we administer programs and deliver care. We must meet this moment not only with compassion and conviction but with ingenuity – reimagining a health care system that stabilizes families and is equitable, sustainable and serves every person who depends on it.
Read the full commentary here
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Louisiana - Medicaid cuts in Trump’s tax and spending law could burden school budgets
By Safura Syed, Verite News New Orleans, August 4, 2025
Hundreds of billions of dollars in cuts to federal health care spending, passed last month as part of President Donald Trump’s “One Big Beautiful Bill,” could mean that, over the next 10 years, millions more Americans will be left without health insurance of any kind. But the sweeping domestic policy bill — which Trump signed into law on July 4 — won’t just impact American households. They could also hit public school budgets.
School districts across the country rely on federal Medicaid dollars to pay for medical services and counseling for students, as well as related personnel expenses, such as school nurse salaries. Medicaid payments to schools total more than $7 billion every year, including tens of millions every year to Louisiana public schools, according to a Healthy Schools Campaign study released this March.
But much of that funding could be at risk following the passage last month of Trump’s massive domestic policy bill. For schools, particularly those in high-poverty areas such as New Orleans — where 60% of children are enrolled in public health insurance programs — Medicaid cuts could mean less access to health care for students.
The cuts could also stretch school budgets in other areas. Schools are legally required to provide certain medical services, such as for students with disabilities who are enrolled in a special education program. Jessie Mandle, the national program director of the Healthy Schools Campaign, said some schools may have to make difficult budget decisions — weighing cuts to non-medical staffing, building maintenance or school programming — in order to pay for those services.
“I want to make sure that school districts understand that these tough decisions that they’re making now are directly connected … to the provisions of this bill, that they are not making these devastating choices in isolation, that they are making these decisions because of the provisions of this bill,” Mandle said.
Rather than direct budget cuts, the new law achieves Medicaid cost savings primarily through changes to how the program is administered — including a work requirement and a more stringent renewal process — that will make it harder for people to qualify for and stay on Medicaid. The Congressional Budget Office has estimated that nearly 12 million people could lose health coverage over the next decade as a result of the changes.
Schools that provide health services to students enrolled in Medicaid bill their costs to the program through the Louisiana Department of Health. The department reimburses schools for the health care services they provided over the school year, including the salaries of the people who provided them. Money from the reimbursements can be reinvested anywhere in the school, increasing the amount of funding that schools have access to in a given fiscal year.
But if fewer students are enrolled in Medicaid, then less Medicaid money will be available to schools.
Sabrina Corner, a Medicaid recipient whose son, Kaleb Bolden, is in 8th grade at Mary Mcleod Bethune Charter School in Gentilly, said the school’s medical services have been instrumental in making sure he takes his medication. Kaleb, who has Type 1 diabetes, needs to take insulin after every meal and any period of physical activity, including gym and band class.
“The school plays a big part,” Corner said. “Because he is a child, he can’t do it himself. He needs to have supervision and of course I can’t just leave my job or wherever I am to give him the meds. And it’s very important that he gets his meds because it’s his life. He has to take this in order for him to live every day.”
Special education services could be threatened, too
Under the federal Individuals with Disabilities Education Act, which governs special education services, public school students with disabilities must be placed on education plans tailored to their needs.
Such plans may call for students to be given extra time on tests or provided access to speech-to-text software for assignments. But they can also include medical services, such as physical therapy, mental health counseling or speech pathology.
Schools are legally required to follow those plans. And the federal government reimburses certain medical costs for special education students — but only if they’re enrolled in Medicaid.
Nationwide, Medicaid cuts in schools are expected to lead to school health staff layoffs, a reduction in mental and behavioral health services and a reduction in resources for students with disabilities, according to the March survey of 1,440 public schools across all 50 states by Healthy Schools Campaign. The combined effects of these rollbacks will affect student achievements, survey respondents and Horwood said.
Louisiana was the first state to expand its school-based Medicaid program in 2015, allowing reimbursements for nursing services delivered to all students on Medicaid. And in 2020, Louisiana expanded the program to cover all medically necessary services for students on Medicaid. New Schools for New Orleans, an education advocacy group, found in 2023 that New Orleans schools had an estimated $10.5 million in possible Medicaid reimbursable funding, but due to complexities in billing and lack of resources, schools were only receiving around 40% of that. Since then, New Schools for New Orleans, the Orleans Parish School Board and the New Orleans City Council have collaborated to increase the amount of Medicaid reimbursements schools receive.
Orleans Parish School Board member Olin Parker said the NOLA Public Schools district has made expanding access to physical and mental health services for students one of its priorities. He fears that reduced Medicaid reimbursements will force schools to make cuts elsewhere in their budgets to keep up with federal requirements for special education students.
“Now you’re spending your own fund balance on what used to be reimbursable services, that means you have less money to pay your teachers,” Parker said. “That means you have less money to invest into your school buildings. That means you have less money to invest in the programming that’s happening at your schools.”
Read the full article here
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‘Not just a number’; Nevada’s disability community fears backslide amid funding cuts
Experts note that cuts to services for people with disabilities are often the first to take place, but they’re vital for ensuring independence.
By Tabitha Mueller, The Nevada Independent, August 3, 2025
Shelby Benzing is a 21-year-old UNR student who lives with cerebral palsy — a neurological condition that disrupts control of muscle movement and coordination.
Benzing uses a power wheelchair and is able to live independently with support from a host of safety net programs. She hopes to leverage the degree she’s earning in human development and family science to be an advocate for the estimated 269,000 children and adults in the Silver State who have some form of disability.
But Benzing is now worried about the pending federal health care cuts to Medicaid passed as part of the “One Big Beautiful Bill” and separate budget changes to disability services that federal lawmakers are considering.
“[Medicaid] helps cover my wheelchair, covers doctor’s appointments, medications, medical supplies … this is not only affecting me, but thousands of other people,” Benzing said. “I know how vital these accommodations are, and they don’t know what they’re messing with.”
Though the reconciliation bill has gotten its fair share of headlines and is projected not to create a major immediate budget shortfall in Nevada, disability advocates and community members are increasingly afraid of a backslide stemming from additional cuts and changes being weighed at the federal level that are expected to affect supportive services that help disabled people live independently.
“We are not just a number on a card,” Benzing said. “We are actual human beings trying to be a functioning citizen and a productive member of society, and we use those benefits every day of our life.”
In addition to Medicaid work requirements implemented as part of the bill for adults without a documented disability, the Trump administration has dismantled the federal Department of Education (which supports students with and without disabilities) while removing disability-related information resources from federal websites and lawmakers are considering federal cuts to programs that help Nevada’s disabilities network.
Already, at the state level, health officials implemented waitlists for new applicants seeking various contracted services, including supportive living arrangements for individuals who need help living independently, job training, service coordination and family support services. Officials said that as of June 30, between 10 and 1,300 people are on any one of several waitlists. For example, the waitlist for personal assistance services, which provide community-based in-home services to enable adult individuals with severe physical disabilities to remain in their own homes and avoid placement in a long-term care facility, is 67 people long; the developmental services respite care waitlist has more than 1,300 people on it and 483 people are on the waitlist for optional Medicaid home and community-based services waiver for persons with physical disabilities.
Jaeron Mickle, spokesperson for the Nevada Aging and Disability Services Division (ADSD), wrote in an email that the Legislature approved additional funding in 2025 to maintain services for existing clients across all programs, but overall funding didn’t increase. Therefore, he said, waitlists have been implemented for new applicants for services through the division.
Catherine Nielsen, executive director of the Nevada Governor’s Council on Developmental Disabilities, said broadly, cuts of any sort usually disproportionally affect supportive services, which enable people with disabilities to remain in their own homes and communities of choice. These types of services are often optional or supplemental by law, she said, which means that when state budgets get tight, they’re the first to go.
If non-Medicaid federal funding for supportive services goes away, Nielsen said she fears that people with disabilities could have to move into group homes, larger living situations with limited choices and even face the potential for increased placement in institutions, which have a historical aspect of abuse and neglect. Institutions have been slowly phased out in Nevada. Still, there are documented instances of people being sent out of state to institutions for care because services were not available within the state.
“We’re talking about personal care aides, supported employment, assistive technology, respite, things that make daily life possible,” Nielsen said, clarifying that these aren’t guaranteed Medicaid services. “[These types of cuts] reduce opportunity, dignity and independence for really everybody in the community.”
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Minnesota - Medicaid cuts will rip away care from deserving American families
By Alicia Schaupp, Minnesota Reformer via News From The States, August 5, 2025
In Minnesota and across the nation, hardworking families like mine are bracing for impact after our Republican members of Congress voted to cut spending on Medicaid by $1 trillion over the next decade.
As a result, 17 million Americans will have coverage ripped away from them, all for tax breaks whose biggest beneficiaries will be billionaires and big corporations. The latest estimate reported by the Minnesota Reformer shows at least 140,000 Minnesotans will lose coverage. The consequences of this bill will be felt for years to come, but some of its worst provisions will take effect in a matter of months.
Families like mine rely on Medicaid to keep our children, and our loved ones, healthy.
Our family receives Medicaid for our 11 year old daughter. She has a primary immune deficiency as well as a tethered spinal cord. Her medication costs over $75,000 a year, which we could not afford on our own or with my husband’s insurance.
Medicaid helps my daughter maintain her health so she does not end up critically ill with severe infections. It also prevents hospital visits and allows her to remain in school. Medicaid also helps cover the costs to monitor her tethered spinal cord and provide her with life-changing physical therapy. Without it, she could be at risk of losing her ability to be mobile.
Medicaid has changed her life.
Starting in 2026, families in Minnesota will feel the full force of the severe health care cuts.
First, premiums and out-of-pocket costs will skyrocket for people who purchase their own health insurance through the Affordable Care Act, and many will lose coverage altogether due to miles of red tape.
Then, devastating cuts to Medicaid will begin to take effect. The savings are expected to come from pushing people off Medicaid through increasing eligibility verification. If we don’t vigilantly submit the correct paperwork, my daughter could lose her coverage.
At risk are hospitals whose patients are on Medicaid; seniors who need Medicaid for their nursing home care; and people fighting addiction or cancer.
Costs will skyrocket across the board: Minnesotans will be forced to travel further for maternity care and emergency rooms, face longer wait times due to hospital closures, and it will be harder for families to get covered and stay covered.
I fear for my daughter’s future — and for the millions of Minnesotans who rely on Medicaid to live. She did not ask for this. Nothing we did caused this. She was simply born with it. Both my husband and I are hard-working, tax-paying citizens that just happen to have a child with complex medical needs. For my daughter, this isn’t just about policy; it’s about survival. Without Medicaid, she loses access to the treatment that keeps her healthy, in school and full of life.
The damage will be felt in every corner of the country, including across Minnesota. In addition to people losing their health coverage, our local economy will suffer, with 18,000 jobs at risk in Minnesota due to these cuts.
Continued
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Medicare and Medicaid turn 60 – and face historic cuts decades in the making
By Jessica Glenza, The Guardian, July 30, 2025
The US’s largest public health insurance programs, Medicare and Medicaid, turn 60 years old on Wednesday – a birthday that will be celebrated only weeks after Republicans enacted the largest cuts to healthcare in the nation’s history.
Passed in the civil rights era, the sister health insurance programs served as tools for the Democratic president Lyndon Johnson to desegregate American healthcare and fight poverty.
In a health system defined by a patchwork of public and private coverage, Medicare and Medicaid have stood for 60 years as the civil rights era’s health legacy – their history more often marked by expansion than contraction, even amid decades of attacks from conservatives.
That history took a sharp right turn on the Fourth of July, when Donald Trump signed a Republican budget law that will cut $1tn from Medicaid beginning in 2026.
Today, Medicare insures more than 68 million seniors, and Medicaid insures 71 million low-income, elderly and disabled adults. Cuts signed by Trump are expected to result in nearly 12 million people losing Medicaid coverage and another 5 million people losing health insurance because of a reduction in government subsidies to private insurance, through so-called “Obamacare” plans.
The cuts are the largest in the program’s history, and enact decades of conservative rhetoric – tracing all the way back to then-actor Ronald Reagan’s 1961 criticism of public health insurance as “socialized medicine”.
What’s the history of Medicare and Medicaid?
Medicare and Medicaid were enacted together on 30 July 1965 – born with Johnson’s signature on the Social Security Amendments of 1965, or HR 6675.
The programs represented both an enormous victory and, in a way, a concession. A group of campaigners for universal health coverage tried and failed to pass a “national health insurance” after the second world war – in large part because of the antagonism of American doctors – around the same time that the United Kingdom’s National Health Service was getting off the ground.
Unable to achieve universal coverage, proponents settled for an “add-on” to social security, the retirement benefit for older Americans, according to Pulitzer prize-winning author Paul Starr, whose book, The Social Transformation of American Medicine, is the authoritative history.
“Medicaid was a footnote,” said Starr. “The whole focus was on passing Medicare.”
When did conservatives start pushing for cuts?
Beginning in the Reagan era in the 1980s, conservatives proposed transforming Medicaid from an “entitlement”, which does not cap costs, to a limited “block grant” to states – necessarily capping how many people and what services would be covered.
The former House speaker Newt Gingrich, George W Bush’s administration and the former House speaker Paul Ryan, all Republicans, made proposals to block-grant Medicaid.
Decades of rhetoric pushing to cut Medicaid carried into talking points about the One Big Beautiful Bill Act, Trump’s signature spending bill. Trump officials rolled out vintage Republican arguments to describe Medicaid beneficiaries as caught in “a lifelong trap of dependency”.
A wide array of evidence shows most Medicaid beneficiaries who can work already do, and new requirements instead function as red tape to limit enrollment. Polls show that Medicaid is widely popular, even among Republicans.
The Obama administration led a historic expansion of Medicaid in 2010, through the Affordable Care Act (ACA), better known as Obamacare. For the first time, Medicaid would cover working-age single adults – not just pregnant women or families, as the program had traditionally done.
In 2025, a major economic study again showed its benefits: expanding Medicaid to millions more Americans probably saved more than 27,000 lives.
The improvement in Americans’ health was perhaps only matched by the ferocity of attacks from the political right. For nearly a decade, the repeal of Obamacare became a cornerstone of Republican politics.
Trump himself has only sporadically engaged in the healthcare debate. In 2017, he would tell the press: “Nobody knew that healthcare could be so complicated.” Before he was elected again in 2024, he said he had “concepts of a plan” to replace Obamacare, and promised not to touch Medicaid, Medicare or social security.
Trump first attempted to repeal Obamacare in 2017, a change that would have left an estimated 15 million people without insurance. The bill was memorably tanked with a thumbs-down from the Republican senator John McCain.
However, ideas about how to cut Medicaid did not sink with the bill. In 2018, the Trump administration approved the first Medicaid work requirements as pilots in Arkansas and Georgia. Courts struck down those pilots, but they now form a critical part of how the One Big Beautiful Bill Act is expected to push people off the program.
Starr described the cuts to Medicaid as out of step with reality.
“A lot of people do work at the minimum wage, millions of people, and they’re still poor,” he said. “And by the way those minimum-wage jobs won’t provide them any healthcare – so you’re just going to let them die when they get sick? What are you going to do?”
Read the full article here
| | Dental Care for People with I/DD and Autism: | |
Touro’s Transformative Dental School: The Future Home Of the TouroCares Dental Clinic for Adults With IDD
By Moshe Kinderlehrer, Jewish Link, August 7, 2025
As a parent of an adult son with intellectual and developmental disabilities (IDD)/autism, I know all too well the profound challenges families like mine face when taking a child with IDD or autism to the dentist. Some of the absolute worst moments of my parenting career have come in the dentist’s office as I pleaded, mainly in vain, to my special needs child to listen to our dentist, to open his mouth, to try and stay still, or just to be calm. Nothing really ever worked too well and sometimes I would need to physically hold my son down or use my weight or strength or both to make sure his arms and legs didn’t hit the dentist. Very unpleasant times as a father, and I came to dread these biannual visits. And as our son got bigger and older, my wife informed me that taking him to the dentist was going to be exclusively my job as it was too difficult physically and emotionally for her.
Don’t get me wrong; our son’s dentist was and is literally a malach (angel) and knew exactly the right tone of voice to use with our son to keep him calm, but it was never easy. Even in the best of visits, I always worried about my son biting the dentist’s fingers by accident. (Thankfully, that never really happened, although we had a few close calls. Now is a good time to offer a heartfelt shoutout and deep hakarat hatov to Dr. Sari Zimmer and her staff!
But perhaps even more challenging than the experience of visiting the dentist is finding a dentist in the first place who is willing to treat children like ours. It only gets harder as our children become adults. Our current dentist is our 24-year-old son’s pediatric dentist, and at some point in the next few years, he will have to go to a dentist who treats adults. We currently do not know where he would go once his lovely pediatric dentist finally tells us he is too old. And we are not alone in this. Practically all parents with kids like ours have very few options, if any. The bottom line is that most dentists do not treat or specialize in adults with IDD.
So when Alan Fuchs from Teaneck, whom I have known and respected for many years, called me (he and his wife Heidi are longtime Teaneck residents and active in our community on many levels) and let me know that he is currently working in the Office of the President as Strategic Lead for Special Projects, he was excited to share that he is actively raising money for the planned TouroCares Dental Clinic, a dedicated facility designed to provide comprehensive, compassionate dental care for children and adults with IDD.
My ears perked up when I heard about the clinic since I understood the incredible need for such a facility quite personally. I was very happy to learn that the TouroCares clinic is going to be on the campus of Touro’s dental college in the heart of nearby Westchester (in Hawthorne) and not a long drive at all for me or the majority of our readership. Fuchs invited me to come to the campus and interview the dental college deans, visit the school and tour the site of the planned clinic. I happily said yes. I had never visited a dental school before and didn’t really know what to expect.
When I reached the school’s beautiful building, the lobby area was filled with dental students (each student year wearing a different color uniform) and patients from all walks of life, including Chasidim from Rockland County, going to the school’s existing dental clinic. I was ushered upstairs to the executive suite and met with Dr. Ronnie Myers, the dean; Dr. David Katz, vice dean and director of halachic dentistry; Barbara Kram, the school’s director of marketing; and Ellie Schlam, Touro University’s executive director of communications and marketing; along with Fuchs as well. I was already familiar and quite friendly with Katz, who is practically family to me as he is my brother-in-law’s uncle, also lives in Teaneck, and we featured him in our paper back in 2017 for his unique halacha sefer, entitled “Kesser Dovid: The Halachic Guide to Dentistry.” I consider Dr. Katz to be a bit of a talmid chacham and certainly one of the most knowledgeable dentists I know. He has been talking to me for years about how much he loves his role as clinical dean, and I was excited to see him in action.
I began the interview with Myers, who told me about his background. A pediatric dentist by training and a passionate advocate for IDD care, he serves as the driving force behind the dental school and the planned clinic, TouroCares. His personal and professional journey has uniquely positioned him to lead this effort. Early in his career in the late 1970s, he did a fellowship at the Rose F. Kennedy Center in the Bronx, where he treated a wide spectrum of individuals with significant medical and IDD issues, profoundly shaping his understanding of the need. “To me, it was mind-blowing … it was just an incredible experience,” he recalled of his immersive year, where he learned to treat patients with and without sedation and general anesthesia. He taught and practiced there for a few more years as well.
Myers pinpointed the core issues affecting treatment for children and adults with IDD: “It’s the lack of training more than anything else that makes it so that these individuals can’t get treated in a general dental office,” he said. This lack of specialized education often leads to patients being “pushed off” and facing long waits, frequently necessitating hospital treatment due to the complexity of their care.
He further elaborated on the current state of dental education: “It has become increasingly part of dental education to say that it’s imperative and a standard that we have to train individuals with IDD/autism. But how much time in a general program can you train individuals because you have to train them to do everything else as well? So it really doesn’t take on the magnitude that it needs for people to really learn how to treat individuals.”
Continued
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[Please click on blue link to view information about the bill]
VOR SUPPORTS:
H.R.1262 & S.932 - Rep. Michael McCaul (R-TX) and Sen. Markwayne Mullin (R-OK) "Give Kids A Chance Act" - To amend the Federal Food, Drug, and Cosmetic Act with respect to molecularly targeted pediatric cancer investigations. This bill would renew research into pediatric cancers and includes increasing funding for rare diseases, some of which cause Intellual and developmental disabilities and autism.
H.R.1509 & S.752 - Rep. Lori Trahan (D-MA) & Sen. Chuck Grassley (R-IA)
Accelerating Kids' Access to Care Act -
This bill would amend titles XIX and XXI of the Social Security Act to streamline the enrollment process for eligible out-of-state providers under Medicaid and CHIP, and streamline enrollment under the Medicaid program of certain providers across State lines.
H.R.2598 & S.1277 - Rep Jared Huffman (D-CA) and Sen Chris Van Hollen (D-MD) The IDEA Full Funding Act
To amend part B of the Individuals with Disabilities Education Act to provide full Federal funding of such part.
S.2279 - Sen. Josh Hawley (R-MO)
A bill to repeal the changes to Medicaid State provider tax authority and State directed payments made by the One Big Beautiful Bill Act and provide increased funding for the rural health transformation program.
H.R.1950 - Rep. Mark Pocan (D-WI) - Protect Social Security and Medicare Act
To protect benefits provided under Social Security, Medicare, and any other program of benefits administered by the Social Security Administration or the Centers for Medicare and Medicaid Services.
S.779 & H.R.1735 - Sen. Alex Padilla (D-CA) & Rep. August Pfluger (R-TX)
To amend title XIX of the Public Health Service Act to provide for prevention and early intervention services under the Block Grants for Community Mental Health Services program
H.R.2491 & S.1227 - Rep Kat Cammack (R-FL) & Sen. Edward Markey (D-MA) - The ABC Act
To require the Administrator of the Centers for Medicare & Medicaid Services and the Commissioner of Social Security to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs
VOR OPPOSES:
H.R.2743 & S.1332 - Rep. Bobby Scott (D-VA) & Sen. Bernie Sanders (I-VT) Raise the Wage Act - A bill to provide increases to the Federal minimum wage and for other purposes. VOR opposes the provision in this bill that would phase out section 14(c) and sheltered workshops for indiviiduals with I/DD and autism.
S.2438 - Transformation to Competitive Employment Act (Sen. Chris Van Hollen (D-MD) - A bill to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support people with disabilities through competitive integrated employment, to phase out the use of such special certificates, and for other purposes.
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