August 14, 2026

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.

Here's a nice thoughtful piece that one of our members sent in.

The Great Divide

When did belonging start requiring an enemy?

Jillian Eisloeffel, Bobby’s World, August 10, 2026

Religion, politics, race, class, nationality. We inherit some of these distinctions before we are old enough to understand them. Others we choose. Then there are the ones we create along the way, sometimes around causes that began with very good reasons for people to find one another.

Humans have always needed belonging. For most of our existence, finding your people wasn’t some abstract exercise in identity. It was survival. Your group protected you, fed you, taught you how to live and gave you a place in the world.

There is a particular relief in finding someone who understands a part of your life that usually requires an explanation. Parents like me know this feeling. You can spend an hour trying to explain profound autism to someone who has never lived near it, or you can look across a table at another mother who has and barely finish the sentence. “She knows”.

There is comfort in that kind of recognition, and there is power in it too. People who have been ignored find one another and become harder to ignore. People who have been mistreated organize. People who have been excluded build their own rooms when nobody will give them a seat in the existing ones.

None of that troubles me. What troubles me is what can happen next. The danger comes when belonging requires an enemy.

At some point, knowing who we are can become tangled up with knowing who they are. The boundary starts doing more than identifying the group. It protects the group from ideas that threaten it. Listening to the wrong person becomes suspicious. Questioning something your own people believe can feel disloyal. Agreement with someone outside the circle needs an explanation.

Human beings have been doing versions of this for a very long time. History contains the catastrophic examples, when governments turned human differences into laws and entire populations were taught to fear people they once lived beside. There are quieter versions too, passed through families and institutions until nobody remembers exactly who drew the original line. We inherit the division and assume the division itself is natural.

Difference is natural. The decision that difference requires opposition is OURS.

I’ve started wondering about this because I see a smaller version of it playing out in a community that has become a large part of my life.

Continued

August is Make-A-Will Month

August is Make-A-Will Month, and VOR would like to remind our families how important it is to plan ahead for your loved ones with intellectual and developmental disabilities and/or autism, and to make sure your will is up to date.

Most VOR members have already made sure their affairs are in order, but if you need guidance, the American College of Trust and Estate Counsel (ACTEC) offers free, expert-vetted resources to help you get it right.

https://www.actec.org/august-is-make-a-will-month

Take Action At Home

The House of Representatives is on vacation for the month of August.

The Senate will follow next week, or the week after that, depending...

They will probably be out through September 13, a week after Labor Day.

This is your chance to meet with your representatives in their district offices, and your two senator in their state offices.

Call them, meet with them, attend a town hall, whatever works for your family. Tell them your story. Show them pictures of your loved ones if you can't bring them with you. Ask them to help people with I/DD and autism.

Repeat, as often as you can, until everything has been fixed.

It's always nice to be quoted in an article, and VOR has been working to expand our outreach. On that note, if any members have connections with members of the media who might be supportive of our advocacy, we ask you to contact us at info@vor.net

These Places Banned Subminimum Wage. Here’s What Happened To Workers With Disabilities

by Michelle Diament, Disability Scoop, August 11, 2026

More than a dozen states have moved in recent years to stop employers from paying workers with disabilities less than minimum wage. Now, it’s starting to become clear how that decision is playing out on the ground.

A first-of-its-kind analysis finds that eliminating what’s known as subminimum wage employment does not lead to a significant drop in the number of people with disabilities who are employed, the hours they work or their wages.

Within two years, subminimum wage employment fell by about 2,000 workers per state, according to findings published in the June issue of the journal Labour Economics. At the same time, income from government welfare programs declined by more than 12%.

“The biggest takeaway from our study is that the employment fears that have kept section 14(c) in place at the federal level are not supported by the national data,” said Michelle Yin, an economist at Northwestern University who led the study. “The policy does exactly what it is designed to do, that is sheltered workshop employment falls, … but workers do not disappear from the labor force. They remain employed, and by different measures, they become more economically self-sufficient.”

Since 2015, however, 17 states have enacted legislation eliminating 14(c) certificates, according to the Association of People Supporting Employment First. The Biden administration sought to take things a step further by ending the program nationally. In 2024, the Labor Department proposed plans to stop issuing new certificates and phase out 14(c) over three years.

Now, the winds appear to be shifting. The Trump administration withdrew the Labor Department plan last year and the House Committee on Education and Workforce advanced a bill in May designed to make it easier for young adults with disabilities to enter 14(c) employment.

For the study, Yin and her colleagues looked at administrative data from the Department of Labor and the Census Bureau’s Current Population Survey from 2009 to 2024 on 15 states that eliminated subminimum wage employment. Each state ended subminimum wage on a different timetable, but notably, the patterns the researchers observed were remarkably similar across states no matter their size or political leanings.

However, Yin admits that the outcomes aren’t entirely rosy for everyone.

“The aggregate results likely reflect two groups moving in different directions,” she said. “Workers with higher productivity and more labor market experience appear to find competitive employment. Workers with the most significant disabilities and the least experience outside sheltered settings may exit employment rather than transition. The averages look encouraging, but averages can mask who gets left behind.”

That’s where the approach a particular state took matters, Yin said. In states that prioritized supported employment, job coaching and vocational rehabilitation alongside eliminating subminimum wage, individuals were more like to transition to new employment, while states that neglected to build such infrastructure left some workers without appropriate options.

Still, Yin says the findings broadly support moving away from subminimum wage.

“The feared employment collapse has not materialized in any of the 15 states we studied,” she said. “The transition from subminimum wage to competitive employment pays for itself when the investment is in place.”

But Hugo Dwyer, executive director of VOR, which supports the availability of subminimum wage employment, said the numbers don’t tell the whole story.

“We need to somehow look at the human side, and measure satisfaction and the opportunity for personal growth,” he said, adding that it’s important for individuals with disabilities to have choices.

“No one has to work in a sheltered workshop if they don’t want to,” Dwyer noted. “But they are right for a certain cohort of individuals who have a combination of skills that exceed those exercised in day programs and challenges that make it difficult for even the most patient employer to accommodate them.”

Read the full article here

Senators reintroduce bill that would make HCBS a mandatory benefit, end wait lists

By Marissa Fernandez, McKnight's Home Care, August 13, 2026             

A newly reintroduced Senate bill aims to help more than 600,000 Americans who are waiting for Medicaid home- and community-based services (HCBS) that allow them to age in place. 

The Home and Community-Based Services Access Act would make HCBS a mandatory benefit and eliminate the need for the current waiver programs. It also would increase federal Medicaid funding for HCBS and provide states with grants to expand their program’s capacity and reduce waiting lists.

According to KFF, almost 607,000 Americans were waiting for HCBS in 2025 and the national average wait time is 37 to 40 months.   

“Every American deserves the opportunity to receive care in the place they call home,” said Sen. Ben Ray Luján (D-NM) who introduced the bill with Sen. Tim Kaine (D-VA). “Far too many older adults and people with disabilities are forced into getting care in a setting far from home, not because it’s what they want, but because it’s the only option they have. My legislation would give families the freedom to choose the care that best meets their needs, while strengthening the caregiving workforce and providing critical support for family caregivers.”

While all 50 states and the District of Columbia offer Medicaid HCBS, waivers are used to deliver services to specific populations and limit enrollment. Currently, HCBS coverage is optional and nursing home care is required which leaves these programs vulnerable to budget cuts. 

Beyond expanding HCBS, the legislation would support the direct care workforce through improving job quality and increasing stability by providing higher wages. And there would be expanded training and support for caregivers as well as improved oversight for HCBS as a whole. 

Continued

Note: According to CMS, ICFs are also an optional Medicaid benefit. It is not clear whether this bill, should it pass, would include ICFs.

Note: the following article presents an interesting overview of the HCBS system and some of the challenges and opportunities in the years ahead.

A Look at Medicaid Home and Community-Based Services: Background and Policy Landscape

By Kamryn Perry, Allison Buffett, and Lisa Harootunian, Bipartisan Policy Center, August 12, 2026     

Many older adults and people with disabilities require assistance with daily activities such as bathing, dressing, and medication management, collectively referred to as long-term care (LTC). As the nation’s population ages and more people choose to receive care at home, home and community-based services (HCBS) has become an increasing share of Medicaid’s long-term care spending and benefits. HCBS helps many people, including people with disabilities, maintain their independence while remaining connected to their communities

Because Medicaid is the nation’s primary payer of long-term care, changes to Medicaid funding affect HCBS along with millions of beneficiaries, family caregivers, providers, and state budgets. Recent federal and state policy developments have renewed attention to how HCBS is financed, administered, and overseen.

This explainer provides an overview of Medicaid HCBS, explains why these services have become a vital component of long-term care delivery, and examines the current policy landscape shaping future decision-making.

Continued

Indiana families lose Medicaid access for children with disabilities             

By Kara Kenney, WISH TV News, August 7, 2026

Some Indiana families with disabled children said they are being kicked off their health insurance through Medicaid.

Several mothers contacted Kara Kenney with Indiana’s I-Team.

Parents of kids with disabilities rely heavily on Medicaid and its Home and Community Based Services waivers. These programs help fund critical therapies like speech, occupational, physical and behavioral.

Ruth Hevelone lives in Kokomo. She’s a mother to twin boys with autism.

Her son Sammy waited three years to get on the Medicaid wavier, and when he did, it was a game changer.

“My son sees nine different specialists,” Hevelone said. “He has more than autism, way more going on.

He gets 40 hours of therapy a week. That’s paid for by this waiver.”

The waiver also allows Ruth’s husband to be a full-time home health aide to the children.

On June 1, the family was notified by the Indiana Family and Social Services Administration (FSSA) that Sammy was kicked off Medicaid, which also impacted his waiver.

“It’s just devastating,” said Hevelone. “I was in a panic, a state of complete panic.”

If a child is under 18 with a waiver, Medicaid only looks at the child’s income and assets.

Ruth says earlier this year, they wrote FSSA a letter stating their income was waived. Yet months later, FSSA told them they also needed proof of the entire family’s income and assets, which Ruth provided.

“You have to turn in everything: your mortgage, 30 days bank statements, 30 days pay stubs, everything,” said Hevelone.

When they went to the FSSA office, it didn’t help, Ruth said.

“They said that the paperwork we turned in on May 22 was still sitting on someone’s task list to process, and therefore, because it was never processed it was canceled,” said Hevelone.

Something similar happened to Trisha Norfleet. She also lives in Kokomo and has two sons with autism.

“We have been struggling so hard to get our boys back on Medicaid,” said Norfleet. “They are both on the waiver. We are beside ourselves.”

Trisha said the state kicked her son off Medicaid, saying she did not meet the income requirements, something she said doesn’t make any sense because parental income is usually disregarded with the waiver.

“We just want to get our kids back on their insurance,” said Norfleet. “I don’t have the words to describe how much our youngest son needs these therapies. They are literally life changing for him.”

Continued

Lawmakers want transparency in Medicaid waiver denials

By Mackenzi Klemann, Indiana Capital Chronicle, August 13, 2026

Democratic lawmakers are calling for an independent audit of an assessment tool used by the Indiana Family and Social Services Administration amidst a surge in Medicaid disability waiver denials.

The agency denied 6% of disability waivers this year following the rollout of interRAI in January — far higher than the previous sub-1% denial rate.

The tool is used to determine when a person is eligible for family supports and community integration and habilitation waivers, which allow disabled Hoosiers to remain in their homes.

FSSA officials contend the new assessments are needed because they believe too many waivers were being approved, but Democrats on the Medicaid Advisory Committee questioned the accuracy of the assessments when the committee met Tuesday.

Indiana isn’t the only state using the new tool. Legal Aid of Nebraska, joined by other groups, filed a lawsuit in May against the Nebraska Department of Health and Human Services, challenging the state’s use of the assessment system, which uses an algorithm to cut Medicaid home-care services for many individuals with intellectual and developmental disabilities.

FSSA approved more than 99% of disability waivers before the rollout of interRAI, but internal estimates suggest the appropriate approval rate is closer to 90%, according to spokesperson Marcus Barlow.

Barlow said eligibility remains the same, but criteria is now being more accurately enforced.

“Where there is smoke, there is sometimes fire,” FSSA Secretary Mitch Roob said Tuesday. “Sometimes that smoke turns out to be fog. An assessment tool that has approved over 99% of determinations and redeterminations should be questioned, let alone reviewed.”

Some have suggested that the new tool uses artificial intelligence but state leaders say humans make the final decision.

He continued, “We need consistency and objectivity in this process. This tool, developed by researchers and practitioners from around the world, is a way to move us closer to these ends.”

In a letter to Roob last week, Rep. Robin Shackleford asked the agency to pause waiver denials, conduct an independent audit of the assessment tools and provide families with complete, unreacted copies of their assessment evaluations and other documentation.

“It is impossible to look at these numbers and conclude anything other than that the state is using rigid, flawed assessment tools as a sledgehammer to make up for FSSA’s budget shortfalls at the expense of Hoosier families,” Shackleford said in a statement.

“A three-day lookback window, binary yes-or-no questions, and opaque scoring algorithms cannot replace the realities of what a person with complex needs experiences every single day,” she said. “Furthermore, forcing families to beg for basic documentation of their own child’s assessment just to navigate an intimidating appeals process violates fundamental principles of fairness and transparency.”

Read the full article here

Maine is preparing to launch a new program to improve adult disability services, but some fear it could make the system worse

By Patty Wight, Maine Public, August 14, 2026

When kids turn 18 and leave the house, many parents worry how they'll get along in the working world or in college. For parents of children with autism and developmental disabilities, the transition to adulthood can be terrifying as the school-based safety net of state services suddenly falls away.

To provide more stability, the Mills administration is preparing for the launch of a new program which it says will provide more services as well as enhanced independence. But some families fear it won't achieve its much-needed goals.

After David Cowing's son graduated from high school, life at home became more complicated. Cowing says he had to rush home from work many times to deal with emergencies.

"I would come home to broken windows or come home to a smoke-filled house where my son had decided to have popcorn and had put the popcorn in the microwave for an hour because, of course, that's how you pop popcorn," he says.

Cowing's son has an intellectual disability and physical challenges. When he was younger, the school system provided support. But after he graduated, he was referred to the state's adult system of services, which is complex and fragmented.

"The vernacular that is most often used is falling off a cliff," he says. "You really fall off a cliff of services."

Cowing and his wife pieced together whatever care they could. But Cowing says it took a couple of years for their son to access the support he needed in a group home.

"And services that aren't just nice to have," Cowing says." If you're a person with a disability, it's really necessary in the same way that childcare is necessary, in the same way that elder care for aging parents that can't sustain themselves anymore is required."

Cowing's son is now in his fifties, but the transition to adult services in Maine continues to be a major challenge for many families. The state now has a plan to improve the system. Betsy Hopkins, the director of state's Office of Aging and Disability Services says it's a program that would provide support to a person over the course of their life, aptly named the Lifespan waiver.

"So, once a person is on the waiver, they don't have to switch a to a new waiver if something changes in their life," says Hopkins. "They stay on one waiver."

A waiver in this case means that standard Medicaid funding rules can be "waived" to pay for community or home-based services. And the Lifespan waiver would start at age 14 to allow more time to prepare for the transition to adult services.

"This is really a sort of once in a generational foundational system reform," says Lauren Wille, legal director for Disability Rights Maine.

She says the Lifespan waiver will also offer dozens of new services and more flexibility "really aimed at improving the lives of people with disabilities," Wille says. "And I think that the way it's aimed at doing that is really recognizing the independence and the self autonomy of people with disabilities, and really trying to lift that up."

But some providers say while they support the goals of the Lifespan waiver, they fear that the state lacks the needed workforce or funding to make it work.

"It's important to keep in mind the providers are delivering services within exceedingly challenging times within an existing home and community-based system that's already under resourced," says Laura Cordes, executive director of the Maine Association for Community Service Providers. She says services are already collapsing and closing.

Others are concerned that Lifespan could actually make things worse.

"Our goal is to make sure that it's a success and not a detriment to the system," says

Valerie Landry, executive director of the Maine Developmental Services Oversight and Advisory Board. The board provides independent oversight of state services.

"Right now, as designed, we think it will be a detriment," she says.

Landry says she's worried that individual assessments of needed services will be conducted by Maximus, a national for-profit company that's come under scrutiny in other states for performance issues. And Landry says Lifespan is expected to launch next spring, under a new governor and administration. It also comes at a time when the Trump administration is reducing Medicaid funding.

"So our position is let's pause now," Landry says. "Let's pause and get this right."

Continued

Please share this offer with your loved one's

Direct Support Professionals!

VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!

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

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

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

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

info@vor.net

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

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

VOR SUPPORTS:



S.4889 - Sen. Tim Kaine (D-VA) - The Supporting Our Direct Care Workforce and Family Caregivers Act - 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.6137 / S.3211 - Rep. Brian Fitzpatrick (R-NJ) and Sen. Maggie Hassan (D-NH) - Recognizing the Role of Direct Support Professionals - A bill to require the Office of Management and Budget to consider revising the Standard Occupational Classification system to establish a separate code for direct support professionals

H.R4849 / S.2556 - Rep. Adam Grey (D-CA) and Sen. Chuck Schumer (D-NY) Protecting Health Care and Lowering Costs Act of 2025 - To repeal health-related portions of An Act to provide for reconciliation pursuant to title II of H. Con. Res. 14 (Public Law 119-21, The One Big Beautiful Bill Act)

H.R.8736 - Rep. Glenn Grothman (R-WI) - Restoration of Employment Choice for Adults with Disabilities Act - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities. 

H.R.6766 / S.3492 - Rep. Claudia Tenney (R-NY) and Sen. Richard Blumenthal (D-CT) - Essential Caregivers Act - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any period in which regular visitation is restricted.

H.R.4796 - Rep. Laura Friedman (D-CA) - Restoring Essential Healthcare Act -To amend Public Law 119-21 (The One Big Beautiful Bill Act) to repeal the prohibition on making payments under the Medicaid program to certain entities.

H.R.4807 - Rep Greg Landsman (D-OH) - Protect Our Hospitals Act - To amend Public Law 119-21 to repeal certain changes to provider taxes under the Medicaid program. 

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 individuals 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. 

H.R.9401 / S.4865 - Rep. Steve Cohen (D-TN) & Sen. Michael Bennet (D-CO) The Latonya Reeves Freedom Act of 2026 - A bill to prohibit discrimination against individuals with disabilities who need long-term services and support. The bill is "softer" than in previous years, yet still biased against institutions (without specifying ICFs) and fails to acknowledge the importance of ICFs and SNFs in a full continuum of care. 

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