December 22, 2023

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.

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VOR's Winter Fundraising Campaign

For over Forty Years, VOR has advocated for the needs of people with I/DD and their families, supporting a Full Continuum of Care.

We believe that there are no simple, one-size-fits-all solutions. We have consistently advocated to innovate and invest in the ICF system as an integral part of our system of I/DD services.

We know that without appropriate and high quality large congregate care facilities, individuals who cannot be properly served in HCBS waiver settings will be placed into inappropriate large care facilities - warehoused in psychiatric facilities that do not properly address their needs.

We need your help in ensuring that people receive the care they need, whether in ICFs, Group Homes, Intentional Communities, or their Own Homes, and that the caregivers, and family caregivers who help them to lead their best lives are appropriately compensated for their work.

VOR strives improve the DD System for all, regardless of their level of need, the form of care that is best for them, and the manner in which they are employed.

Please Click Here to Join, Renew or Donate

A few weeks ago, we held a Networking Meeting, asking members what intermediate care facilities meant to their families. Below are two of the many responses.

Thank you to all who participated!

What is the importance of ICF's?

How are they saving lives?

Just one son's life. 

When he was born the neurologist told us to put him somewhere to die. His brain stem and spinal cord connection was damaged. The pediatrician told us to take him home and love him for as long as he lived.

When he was 9 yrs old his condition deteriorated to a point I could not continue his care.

An ICF accepted him. The amazing staff of doctors, nurses, personal care, and therapies all worked with our son for 42 years! He lived to be 51 yrs old.

He enjoyed life in so many ways in the ICF. The staff did so much more then protect his life...they provided a life of experiences I could never do. Our son laughed and smiled to show his pleasure for the good things in his life.

Thanks to the ICF his life was saved.

A grateful mother and father - Judith Dyer

Do ICF's Matter?

Of course, ICF's matter.......they matter a great deal!! My sister resided at White Haven Center in Pennsylvania from 1966 until January 2023, very was well-maintained, well-staffed, and it was "home". I visited her a minimum five times every year from my home in Virginia Beach, VA (I am retired Navy), from 1996 (when our step-mother passed-away) until Gov Wolf of Pennsylvania took it upon himself to close White Haven Center in 2022. As for those 7-hour drives from Virginia Beach, "The horse knew the way......and he DIDN'T "dilly-dally". Since the beginning of 2023, Isabel is living at Selinsgrove Center in central Pennsylvania. An ICF has been the only option. I seriously considered bringing her down here to Virginia, but decided she was much better with the stability in Penna. Like them or not, we MUST have ICF's, and WE must make them work for the good of the residents, which White Haven Center most definitely did, and which Selinsgrove is doing as well! I most definitely wish that the people in Pennsylvania government who make these decisions had a "stake in the game". If they had, things would be much different, I assure you.  - Frank Marlow


For the month of December, we are offering Free One-Year Digital Memberships to new subscribers.

We want to get more information out to more people and hopes to be a resource for families. Please feel free to take advantage of this offer and share the link with anyone you like.

Please click here, or on the image below.

In Memoriam - Mark Schomaker

November 24, 1958 - December 20, 2023

It is with great sadness that we share the passing of Mark Schomaker, beloved brother of VOR's Secretary Rita Winkeler. Mark lived in a CILA (group home) in Aviston, Illinois, rooming with his friend of 59 years, David. Mark worked at Community Link for over 40 years.

Known as Buddy, Mark had a great sense of humor, could be cantankerous when he felt like it, and was known and loved by many in his community as well as by his family.

This Week's News:

PBS has aired a new installment from its series "Disability Reframed", with Judy Woodruff, focusing on the shortage of Direct Support Professionals (DSPs). While most VOR members will find nothing new in this presentation, it is important to note that the crisis is now being aired by a major media outlet and being viewed by a large audience of non-disabled people.

Unfortunately, PBS has missed an opportunity to show how serious the crisis is for families who are unable to receive the services they need. They also miss the opportunity to address the economic realities of what will happen socially and economically if the crisis escalates for this, the largest single workforce in America.

What's Behind the Shortage of Workers who Support People with Disabilities?

By Judy Woodruff and Layla Quran,

PBS Newshour"Disability Reframed",

December 20, 2023

The nearly five million direct care workers who support older adults and people with disabilities are the largest workforce in the U.S. But despite high demand, many are paid little more than minimum wage. A longstanding workforce shortage means people with disabilities who depend on those workers are left without the support they need.

Watch the video of this story here

CBO Score: Eliminating 14(c) Will Cost Jobs

The Congressional Budget Office released an evaluation of the Budgetary and Econ omic Effects of S.2488, The Raise The Wage Act Of 2023. Since this bill includes a provision to phase out and eliminate 14(c) compensatory wages, the report includes a section on the negative effects of this provision.

The CBO report concludes that "the increase in earnings (per affected worker) from a higher minimum wage would be larger for workers who would not become jobless, but the larger mandated wage increases would cause larger increases in joblessness. The increase in joblessness might also be relatively large because the disabled workers affected by this section are less productive".

The report goes on to state, "Under current law, employers of section 14(c) workers are required to establish that workers’ wages are commensurate with their productivity. Thus, the lower wages those workers earn indicate that they tend to be less productive.. Employers who are trying to maximize profits would respond to an increase in the minimum wage by first laying off the least productive workers."   

It is important to note that this is the only time the Congressional Budget Office has evaluated the effects of eliminating 14(c) programs, and that their conclusion was that this would result in many of those participating in these programs losing any employment opportunities. Previous CBO scores on similar bills have not included information about the resultant job losses for 14(c) participants.

Click here to download the report

Three Million Fewer Children in the U.S. are Covered by Medicaid: CHIP Enrollment Isn’t Growing Much

By Joan Aiker, Georgetown - University McCourt School of Public Policy, Center for Children and Families, December 18, 2023

We’ve been closely tracking data from around the country related to the lifting of the COVID-19 pandemic related continuous coverage protections in Medicaid. The tracker is going up very quickly now– we hit one million on Halloween, two million on Thanksgiving and today three million fewer children are enrolled in Medicaid. We hit three million and counting as Florida posted its November data which was fitting – as Texas and Florida account for over one million of the children who have lost coverage. Total Medicaid net enrollment decline for adults and children due to the unwinding is now at approximately 7.8 million.

States are moving at different speeds to reassess eligibility for everyone covered by Medicaid – and as feared the process has laid bare the indifference of some elected officials — as well as the systemic challenges of conducting redeterminations for approximately 90 million people even in states where top officials are deeply committed to protecting against coverage loss.

Our tracker looks at the cumulative net decline in child and total enrollment in Medicaid by state using the latest available data for each state and comparing it to the month before the state began redeterminations. These numbers represent net change — so more children have been impacted or faced a gap in coverage. It’s especially problematic to see large declines in child Medicaid enrollment because most of those losing coverage likely remain eligible suggesting that the number of uninsured children is rising rapidly.

Coincidentally the Biden Administration released its own data today on the numbers of children losing coverage, more guidance about what states should and can do, and Secretary Becerra sent individual letters to nine Governors (TX, FL, GA, OH, AR, SD, NH, ID, MT) with the worst records in the country on disenrolling children. We’re parsing through the many pages of information and will have more to say, but we’re very pleased to see that the Biden Administration has put children at the top of their list as the Christmas break looms and recognizes the gravity of the crisis and the number of children losing coverage keeps going up.

As discussed below, we don’t know how many of these children are becoming uninsured but there is good reason to worry. In 2022, 3.9 million children were uninsured, so even if the majority of children losing Medicaid have other sources of coverage, the number of uninsured children is rising sharply.

Continued here

Biden-Harris Administration Releases New Medicaid and CHIP Renewal Data Showing the Role State Policy Choices Play in Keeping Kids Covered

Press Release from the Department of Health and Human Services, December 18, 2023

Today, the U.S. Department of Health and Human Services (HHS) released new data on state Medicaid and Children’s Health Insurance Program (CHIP) enrollment changes among children and youth since full eligibility renewals for these programs restarted earlier this year. The data released today make it clear that state policy choices have real consequences for children and families during Medicaid and CHIP renewals. States that take up proven flexibilities and strategies from the Centers for Medicare & Medicaid Services (CMS) are better able to protect kids’ coverage – especially when the state has also expanded Medicaid.

Continued here

MACPAC Releases 2023 MACStats Medicaid and CHIP Data Book

MACStats presents data and information on Medicaid and CHIP that can be difficult to find or require looking across multiple data sources. MACStats is updated online as new data become available, and published in print as a data book at the end of the year. The tables and figures found here thus represent MACPAC’s most up-to-date statistics on Medicaid and CHIP enrollment and spending and document key aspects of both programs including federal matching rates, eligibility levels, and access to care measures, among others.

Download it here

‘This is unacceptable’: Scorecard says Tennessee Falls Short for Supporting Children and Adults with Disabilities

By Bria Bolden, Action News 5, December 15, 2023

Almost one-third of Tennesseans live with a disability, but advocates monitoring support, education and available resources give the Volunteer State a “D” for its policies, practices, opportunities, and outcomes for those living with disabilities.

The Tennessee Disability Coalition is behind the scorecard.

This year’s “D” grade is lower than last year’s “D+.”

This year’s failing categories are in caregiving support, affordability of care, and housing.

The state scored a “D, ” average or above, in aging, transportation, early intervention, mental health access, and employment.

Despite the passing grades, the coalition says the state has not made the necessary improvements to soar past last year’s score.

The Boywids of Memphis tell Action News 5, they’re not surprised.

William and Elizabeth Boywid’s five-year-old daughter Dauphine was diagnosed with Rhombencephalosynapsis, a rare brain malformation, when she was just a baby. Her secondary diagnoses, VACTERL with Hydrocephalus, have threatened her life, causing several emergency visits over the last five years.

William says in her short life, she’s made tremendous strides they can only describe as a miracle.

“She’s incredibly smart, and up until May, she couldn’t even walk one step,” said Dauphine’s father, William Boywid. “Two and half years before that, she couldn’t even lift her head up. She would roll around on the ground. I’m just saying, she is amazing.”

William says he and his wife work six jobs between the two of them to help cover medical expenses.

“We have definitely forgone opportunities in the past to make a little extra money here and there so we could care for Dauphine,” said William. “The state is committed to taking care of her by supporting us. At least that’s what they say, but the ‘F-’ in that category on the scorecard totally makes sense. I wish it could be lower because it feels that way.”

Dauphine uses a “G-Tube” in order to eat and has a service animal, a Cavalier King Charles Spaniel, named Figgy.

“She has tons of medical equipment that has to be kept up, maintained,” said William. “We have to stay ahead of it. It’s not just a, you do it once and it’s automatic. On a monthly basis, we are calling various different vendors to make sure she has everything that she needs.”

They’ve been in a sort of a tug of war at times with TennCare when it comes to caring for their daughter.

“In September, it took about three weeks before we were able to start talking to Consumer Directed Care, our provider,” said William. “My wife’s mother has not gotten paid after three-and-a-half weeks of submitting her first payroll cycle. And it took us that long, three-and-a-half weeks to go before she could even start caring for Dauphine under this program.”


Families Say Autism Therapy Helped Their Kids. Indiana's Medicaid Cuts Could Put iI Out Of Reach

Starting with the new year, Indiana will implement a universal reimbursement rate for a therapy commonly used by children with autism, at a rate significantly less than what healthcare providers received on average in the past

Shaunna Thompson was running out of childcare options. Her daughter Abbie was expelled from daycare in 2022 because of “all over the place” behavior. Thompson found an in-home provider for the toddler, but was told Abbie was “too much” to watch every day of the week.

The experiences motivated Thompson to seek assistance for her daughter, who also was missing developmental milestones. Abbie, now 3, was diagnosed with autism spectrum disorder in October of last year.

By March, Thompson enrolled her in applied behavior analysis — a therapy based on learning and behavior focused on improving communicative, social and motor skills — at a local facility in northern Indiana for 40 hours a week. Abbie, nonverbal most of her life, has since said her first word: “Mom.”

“It brought tears to my eyes” Thompson said.

But Thompson and other families reliant on Medicaid worry changes coming in January will limit access to the therapy as Indiana attempts to limit the cost and, along with other states, cut the size of the low-income health care program.

Indiana’s Family and Social Services Administration said the cost of Medicaid reimbursement for the behavioral therapy, commonly referred to as ABA, has ballooned in recent years because of the growing number of children seeking the services and the amount that providers have billed the state. The state plans a universal, hourly reimbursement rate for the therapy, but the planned amount is lower than what providers have previously received on average.

Advocates and centers worry this will mean accepting fewer patients or even closing, as has happened in other states such as Colorado this year.

“Companies just kept leaving and it just kind of turned into a crisis situation,” said J.J. Tomash, who leads an ABA provider in Colorado called BehaviorSpan. He blamed Medicaid reimbursement rates that have not kept up with the cost of living.

Medicaid began covering the services in 2016, and providers in Indiana set their own rates until now. But centers say the new rates are still not enough to keep them running and are far below the previous statewide average of $97 per hour.

Indiana Act for Families, a coalition opposing the new rates, said the proposal is 10% below providers’ operating costs. Although Indiana has said the new rates are aligned with pay in other states, the coalition argued the state used outdated data in their comparison. 


Montana - Gov. Announces First Allocation out of $300M for Behavioral Health, Developmental Disabilities

By Keila Szpaller, Daily Montanan, December 19, 2023

The first set of funds allocated from $300 million approved this year to support behavioral health and developmental disabilities will include money to catch up on a longstanding backlog in forensic fitness evaluations at the Montana State Hospital, according to an announcement Tuesday from the Governor’s Office.

“After decades of applying Band-Aids to our broken systems and kicking the can down the road, we’re making a commitment and generational investment to get Montanans healthy,” Gov. Greg Gianforte said in a statement from his office.

The governor, a Republican, had proposed the $300 million investment in his budget, and Rep. Bob Keenan, R-Bigfork, sponsored House Bill 872, carried by Sen. John Esp, R-Big Timber, in the Senate.

The governor said an advisory group, the bipartisan Behavioral Health System for Future Generations Commission, recommended the first couple of initiatives, worth up to $17.5 million altogether:

  • The first initiative, representing up to $7.5 million, will fund the completion of court-ordered forensic fitness evaluations at the county level. There are currently few options for court-ordered forensic fitness evaluations in Montana, with most conducted by one psychiatrist at the state hospital. “This investment will boost the number of professionals qualified to perform these evaluations in our communities, and alleviate a growing backlog at the state hospital,” the governor said.

  • The second initiative, representing up to $10 million, will provide one-time grants to community providers offering behavioral health care or developmental disability services to Montanans. Once awarded, the grants may be used to help purchase or construct new facilities, upgrade and maintain existing facilities, and hire and train staff to increase bed capacity.

“I thank the commission for advancing its recommendation and look forward to its impact on the delivery of behavioral health care in Montana,” Gianforte said.

It was not immediately clear Tuesday afternoon when the work would begin to take place on the ground.

The Commission recommends investments to stabilize behavioral health and developmental disabilities service providers; increase and strengthen the workforce to provide critical care to those in need; increase availability of integrated physical and behavioral health care; and support the establishment of behavioral health settings and intermediate care facilities for individuals with intellectual disabilities.


‘Darkest of Dark Stains’: Kansas Advocates Call for Funding of Long-Forsaken Disability Services

By Rachel Mipro, Kansas Reflector, December 18, 2023

Rocky Nichols, who for years has advocated for disabled Kansans to receive services, increasingly relates to the popular “Peanuts” comic. Nichols used the analogy to describe attempts by him and other advocates to secure government action on the state’s long-stagnant wait lists for disability services.

“I kind of feel like Charlie Brown,” Nichols, executive director of the Disability Rights Center of Kansas, said. “I feel like the legislature and the governor, whoever they have been in the past, is Lucy on this issue. … Lucy is holding that ball. And we’re running at it, and then, ‘Good grief,’ the ball is pulled out of our way and we’re flat on our back.”

Nichols joined Sara Hart Weir, executive director of the Kansas Council on Developmental Disabilities, to talk about the issue during a recording of the Kansas Reflector podcast.

Kansans with intellectual or developmental disabilities are eligible for Medicaid-funded support waivers that cover a variety of needed services, such as in-home care. People who want to receive this assistance, known as intellectual and developmental disability waivers, are placed on a waiting list supervised by the Kansas Department for Aging and Disability Services.

But wait times can last more than 10 years, and more and more Kansans have been added to the slow-moving lists. The wait list for intellectual and developmental disability services is up to 5,235 people, according to November data, and the physical disability list has 2,484 waiting Kansans.

Kansas Reflector examined this issue earlier this year in the series “On the List.”

Weir said she wanted to see legislative action on the wait list in the upcoming legislative session.

“Enough with the finger pointing,” Weir said. “We have a $2.7 billion surplus in our budget here in the state of Kansas. We have $1.4 billion in a rainy day fund. We have a Democratic governor and a Republican Legislature. Let’s get together. Let’s roll up our sleeves. And let’s provide the adequate and necessary funding to start to reduce the wait list.”


VOR Bill Watch:

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


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. 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.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.

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.


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.


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

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

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

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

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

S.3118 - The HCBS Relief Act of 2023

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

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

Please share this offer with your loved one's

Direct Support Professionals!



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

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

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What's Happening In Your Community?

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

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