June 10, 2022
VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
VOR's Annual Members' Meeting

Celebrate VOR's 39th Year of Family Advocacy


Sunday, June 12, 2022
11:30 am - 5:30 pm (Eastern)
On Zoom

The Bears Are Back!
This year, we will award two of our adorable VOR Bears to the top two donors for our Annual Meeting.
Donations received by credit card or mailed and postmarked between May 15th and June 15th of this year are eligible for the drawing.
The winners of the bears will be notified in July.

Schedule of Events

Part 1 - VOR Board of Directors Presentations
  • 11:30 am - Opening remarks from President Joanne St. Amand, Presentation from VOR Board of Directors and Committee Chairs on the State of VOR

Part 2 - Guest Speakers:
  • 12:30 pm - Jill Escher - President, National Council on Severe Autism; Escher Fund for Autism, Past President of the Autism Society San Francisco Bay Area
  • 1:30 pm - Kit Brewer - Executive Director, Project CU - St. Louis, MO; Director, Coalition for the Preservation of Employment Choice (formerly the Coalition for the Preservation of 14c)
  • 2:30 pm - Micki Edelsohn - Founder, Homes For Life, and Author of “Mom with a Megaphone”
BREAKING NEWS: Micki will be joined for her presentation
by a very special guest, VOR's past Director of Government Affairs,
Tamie Hopp, who has helped in editing Micki's book.

Part 3 - State Reports and Networking
  • 3:30 pm - Reports from the States - VOR members present updates on the State of their State. To be followed by an Open Networking Meeting

Closing Remarks - 5:30 pm

All times and events are subject to change...
National News:
Biden Administration Gives States More Time To Spend Disability Services Funds
By Michelle Diament, Disability Scoop, June 9, 2022

States will get extra time to spend billions of federal dollars aimed at bolstering the beleaguered Medicaid home and community-based services system after it took longer than expected for the money to make it their way.

The U.S. Department of Health and Human Services is giving states an additional year to use funds that were made available for home and community-based services as part of the American Rescue Plan, a $1.9 trillion pandemic relief package signed in 2021. The cash infusion was intended to address pressures on the nation’s disability services system that were exacerbated by the pandemic, chiefly a long-simmering workforce crisis.

The measure included a 10% bump in the federal government’s share of spending on home and community-based services between April 2021 and March 2022. States were given broad flexibility in how the added federal funds — estimated to total $12.7 billion — could be used, but the money had to go toward services that were not available before April 2021.

States have outlined plans to use the money to reduce or eliminate their waiting lists for home and community-based services, raise wages for direct support professionals and improve employment opportunities for people with disabilities, among other initiatives.

Note from VOR: This was a missed opportunity, an opportunity to get things right. CMS could have extended the ARPA payments to all people with I/DD, not only those receiving Medicaid long-term services and supports through home and community-based services (HCBS). Hundreds of thousands of people with I/DD have been left out of the ARPA package, as have the Direct Support Professionals who serve people with I/DD in non-HCBS settings. Policies should be written to help people, not to limit their ability to choose the setting that is most appropriate to their needs.
Medicaid Weighs Attaching Strings to Nursing Home Payments to Improve Care
By Susan Jaffe, California Healthline, June 10, 2022
The Biden administration is considering a requirement that the nation’s 15,500 nursing homes spend most of their payments from Medicaid on direct care for residents and limit the amount that is used for operations, maintenance, and capital improvements or diverted to profits.

If adopted, it would be the first time the federal government insists that nursing homes devote the majority of Medicaid dollars to caring for residents.

Three states have already set such mandates, and California lawmakers are considering one during the current session. The bill would require nursing homes to spend at least 85% of revenue from all payers on direct care for residents.

The strategy, which has not yet been formally proposed, is among several steps officials are considering after the covid-19 pandemic hit vulnerable nursing home residents especially hard. During the first 12 months of the pandemic, at least 34% of the people killed by the virus lived in nursing homes and other long-term care facilities even though residents of those facilities make up fewer than 1% of the U.S. population.

Medicaid, the federal-state health insurance program for low-income people, pays the bills for 62% of long-term care residents in nursing homes. In 2019, that totaled $50.8 billion. Medicare, which covers short-term nursing home visits for older adults or people with disabilities, spent $38.2 billion that year. (Officials have not included Medicare payments in their discussions of a direct care spending mandate.)
“The absolutely critical ingredient” for good care is sufficient staffing, Dan Tsai, a deputy administrator at the Centers for Medicare & Medicaid Services and Medicaid director, told KHN.

CMS requested public comments on a possible direct care spending mandate in its proposed update of nursing home payment policies and rates for next year. Tsai also spoke about it at a meeting with Illinois state officials, nursing home workers, residents, and relatives in Chicago in April.

Note from VOR: Perhaps CMS should consider applying these rules in all of their LTSS settings, including those that offer services to individuals with intellectual and developmental disabilities. (Just a thought.)
Bridging the Gap between Adolescent and Adult Care
Eureka Alert, American Association for the Advancement of Science, June 3, 2022

Medical researchers estimate that about 4.5 million Americans with chronic health conditions are currently moving from adolescence into adulthood.

The process of becoming an adult can be stressful enough, but this population has the added challenge of no longer being able to get care from the pediatric health care team they are familiar with and having to find new adult health care providers.

Researchers at the University of Cincinnati have studied best practices to make the transition from pediatric to adult care a more streamlined process and have launched two transition clinics to help patients in this process. Jensine’ J. Clark, MD, leads the Physical Medicine & Rehabilitation (PM&R) Transition Clinic at the UC Gardner Neuroscience Institute (UCGNI) for patients with childhood-onset disabilities, while Emily Nurre, MD, leads the Epilepsy Transition Clinic.

Pediatric-onset disability is a broad term used to describe any disability that happens to a child and affects their development, Clark said, including spinal cord injuries, spina bifida, cerebral palsy or any condition that causes developmental delay.

“Previously, children with pediatric-onset disability didn’t live into adulthood, and so our general understanding of the processes and what adults with childhood-onset disabilities look like is relatively new in terms of the field of medicine,” said Clark, assistant professor in the Department of Neurology and Rehabilitation Medicine in UC’s College of Medicine and a UC Health physician. “Unfortunately, we did not have enough robust systems to care for them once they became adults, and that care continuum was not always smooth.”

Many patients can feel anxiety in having to begin a relationship with new doctors, therapists and others after engaging with the same care team for years, Clark said. The clinic has three main objectives as patients make the transition to adult care.

First, the team works to develop a transition action plan and an individualized treatment plan for each patient, which includes identifying what providers the patient is currently seeing and who they need to continue to see in adult settings.

EVENT: What’s Next in Home and Community-Based Services?
Presented by the Alliance for Health Policy

Home and community-based services (HCBS) is a subset of long-term services and supports (LTSS) that allows patients to receive health services in their home or a local setting rather than a typically higher-cost institutional setting. Offerings include intensive, round-the-clock care through more wrap-around services such as caregiver support, home-delivered meals, and employment supports. About 2 million people received home and community-based services in 2020. Traditionally, Medicaid is the largest payer of HCBS in the country, but recently Congress has discussed dedicating more federal funding, including through American Rescue Plan Act and the House-passed Build Back Better.

During this session, panelists will provide an overview of home and community-based services, including populations receiving these services, current enrollment numbers, workforce challenges, benefits of HCBS, and barriers to caring for complex populations. Panelists will also speak to recent federal policy measures taken to bolster HCBS as well as potential long-term policy levers to better improve this model.

VOR's Annual Meeting & Legislative Initiate help our families to participate in our organizations, to reach out to their Members of Congress, and to become better advocates for their family members with I/DD.

Those who have attended our June meetings in years past will recall what they spent on transportation to and from D.C... what hotel rooms cost, and what other expenses they incurred while in Washington. We ask that you consider giving a share of that expense, maybe part of the cost of airfare or a night at the Hyatt on Capitol Hill,
or even the cost of a quick lunch in the Longworth Cafeteria.

Any and all contributions will be graciously accepted.

Please help us to help you.
Please help us to help families like yours.
State News:
'The System Is In Ruins': Minnesotans with Disabilities Feel Left Behind Amid Workforce Shortage
By Chris Serres, Star Tribune, June 4, 2022
Before the pandemic, Caleb George-Guidry lived in a group home with a circle of friends and staff who understood his spirited personality. He also attended a day support center where he enjoyed a wide range of activities, from painting to yoga, designed for adults like him with significant disabilities.

Now, more than two years later, George-Guidry's life has been turned upside down. Because of severe staffing shortages, the 31-year-old last fall was forced to move out of his group home of the past 12 years and into a new house with strangers who did not comprehend his way of communication. Then George-Guidry's day center in St. Paul abruptly suspended his services after nine years — leaving him isolated and depressed. Today, George-Guidry, who was born with a rare disorder that affects his physical and cognitive development, spends much of his time watching videos and playing games in the common space of the house.

"Most of us are moving past this pandemic, but there's a whole community of people with disabilities who have not been able to move on," said Matt Guidry, his father, who lives in Minneapolis. "It could and should be different."

Even as the worst of the pandemic has eased, the state's carefully stitched safety net for adults with significant disabilities remains badly frayed amid a severe and worsening workforce crisis. Adults with cerebral palsy, autism and other disabilities — who took pride in living independently — are being forced to move back home with their parents or into larger, congregate-care settings where their daily choices are often carefully controlled. Many with intense medical needs feel abandoned and neglected, as their social media feeds are filled with relatives and friends returning to normal lives.

Across Minnesota, more than 3,500 adults with intellectual and developmental disabilities are still waiting to return to day and employment centers that have curtailed services since the pandemic began, according to the industry group that represents these providers. Waiting lists at some large day centers, where individuals make social connections and participate in learning activities, have swelled to hundreds of people. With nowhere to go during the day, many are languishing at home.
"The system is in ruins, and we all feel stretched beyond our capacity," said Stacey Vogele of Cottage Grove, whose 21-year-old daughter, Tana, has multiple disabilities and has been waiting for more than a year to be accepted into a day support center.

The chief cause is a critical shortage of people willing to care for adults with disabilities and high medical needs. Amid a tightening job market, in which the state's unemployment rate recently dipped to an all-time low of 2.2%, thousands of openings for caregiving jobs have gone unfilled. Vacancies for home health and personal care aide jobs ballooned nearly 70% over the past year to 9,110 at the end of 2021, up from 5,383 vacancies at the same time in 2020, according to the most recent state data. The median wage for direct support positions has inched up to nearly $15 an hour, still too low to attract workers from less-demanding jobs, say disability service providers.

In a sign of how severely the safety net is strained, state lawmakers took the unusual step this spring of expanding the licensed capacity of care facilities for people with disabilities. Group homes that for decades have been mostly limited to four people could temporarily house up to six; and licensed six-bed homes, known as "intermediate care facilities," would be permitted for up to eight, under the provisions. While the changes would last only a year, they were opposed by some disability advocacy groups.

To date, the workforce crisis has not caused widespread closings of disability support programs, thanks in part to an emergency infusion of state funding early in the pandemic. Because of staffing constraints, however, some day support centers are serving half as many people as they did two years ago. Others are having to ration services and turn down clients with complex health needs.

"The people who most need services — the medically fragile — are hurting the most," said Julie Johnson, president of the Minnesota Organization for Habilitation and Rehabilitation (MOHR), which represents 100 day support providers statewide.

Delaware - Closure of Day Center for Adults with Disabilities Poses Challenges for Clients and Caregivers
By Paul Kiefer, Delaware Public Media, June 5, 2022

170 adults with disabilities — mostly adults with intellectual and developmental disabilities, but also including some disabled seniors — need a new daytime care provider after one of the largest providers in Wilmington could not find enough staff to reopen their center.

The COVID-19 pandemic forced day centers for adults with intellectual and developmental disabilities to close temporarily, leaving them and their caretakers searching for backup plans.

Clients at a Wilmington center run by Pennsylvania-based nonprofit provider Elwyn expected some relief June 1 when that center was slated to reopen. But Elwyn lost hundreds of employees during the pandemic, forcing it to leave some centers - including the one in Wilmington shuttered indefinitely. Ability Network Delaware executive director Thomas Cook says that caught some families off guard.

“They pulled the plug fairly quickly," he said. "I think families were anticipating that people would be able to get back into services on June 1st because it looked like that’s what they were doing and communications were along that line.”

Rex Carney, Chief of Staff to Elwyn’s director, says the nonprofit struggled to retain staff during the pandemic and had to move some from day centers to residential centers; Elwyn does not operate any residential facilities in Delaware.

“For a variety of reasons, we lost hundreds of people," he said. "And when we closed day programs, what we tried to do was take people from those programs and move them to residential programs because we have to provide services to those people - they live with us.”

But family advocates say most clients can’t easily find a backup plan; some caretakers may need to quit a job, while others may have no options at all.

New Mexico - Opinion: Victory Lap for NM’s Developmentally Disabled is Premature
By Peter Cubra And Ann McCartney / plaintiff lawyers, Jackson v. Ft. Stanton,
Albuquerque Journal, June 9, 2022

As lawyers who, with the late Phil Davis, worked on the Jackson lawsuit since 1987, we write to respond to the Journal’s April 28 article regarding its dismissal and to urge the state to protect the benefits of the case.

Despite the court’s ruling that defendants achieved most of what they promised in 2019, the 5,000 people in New Mexico’s I/DD service system are, in our opinion, in danger. They are not receiving the services required by their Individual Service Plans (ISPs) in violation of the Medicaid Act, and participants who have severe disabilities are not receiving the reasonable accommodations required by the Americans with Disabilities Act.

A major threat is underfunding; particularly regarding: (1) wages for direct support professionals (DSPs) who must implement the ISPs; (2) improper compensation for nursing services and (3) inadequate therapy service rates. Wages paid to DSPs are comparable to Burger King employees; accordingly, many DSPs are young, with limited education and without the sophistication ISP implementation requires. This problem is now a crisis. Therefore, the state must: (1) increase the rates paid to provider agencies to enable them to pay sufficient wages to attract people who can properly implement ISPs; and (2) mandate the wages provider agencies pay are a “living wage” enabling sophisticated adults to be DSPs as a career. In 2002, the state required Medicaid-funded “personal care option” provider agencies to pay $9 per hour. DSP wages should be similarly mandated.

The second threat is the 1,500 people in the “self-directed” Mi Via Waiver don’t get the oversight and protections from harm that “traditional waiver” participants receive, and reasonable accommodations are not provided to Mi Via participants with severe disabilities. The residential rates paid, and the health care oversight and nursing services required, are not stratified based on level of need, unlike in the traditional waiver. People have died due to Mi Via’s failure to accommodate their severe disabilities.

The third threat is that, although the ink is barely dry on the dismissal order, officials are reportedly discussing eliminating vital improvements caused by the Jackson case, including: (1) post-hospitalization discharge planning by state staff, (2) periodic on-site monitoring of people with highest medical risks by state nurses, and (3) eliminating detailed service standards established through court supervision.

If these concerns are not promptly corrected, New Mexico’s celebration of our I/DD system being freed from court oversight could be short-lived. That would be tragic and must be avoided now.

Being Autistic in Florida means Delayed Diagnosis, Delayed Therapy
By Rose Wong, Tampa Bay Times, May 11, 2022

The sooner a child is diagnosed, the sooner they can get therapy. Some parents say it’s taking too long in Florida.
At age 3, Grace couldn’t sit still or hold a conversation with her mom. Angela Falleur said her daughter was kicked out of pre-school for misbehaving.

The family had to wait nine months for Grace to get diagnosed by a developmental pediatrician.
Until then, Falleur had never heard of autism spectrum disorder.

“I felt like we wasted a whole year of her life,” she said. “We spent that year not understanding my child’s deficits, not really knowing what to do to help her.”

That was 12 years ago. Falleur and her husband had three more children who were diagnosed with autism. Now she’s a teacher for third to fifth graders who are autistic at a Pasco County public school and often hears from parents who say they’re stuck in months-long waitlists for autism therapy.

Autistic children respond best to treatment in the first few years of their lives, when the brain is most active in reforming neural pathways — the key to learning and unlearning behaviors. Delayed diagnosis and treatment can lead to greater challenges adopting the motor and social skills taught in therapy, hurting a child’s ability to become autonomous later in life.

“Kids can be diagnosed at 18 months,” said Lauren Gardner, autism program director at Johns Hopkins All Children’s Hospital in St. Petersburg. “Unfortunately for most kids, they’re not getting diagnosed until they’re 4 years old.”

The wait times for undergoing a diagnosis screening and starting therapy in Florida can range from 8 to 24 months, according to Elemy, a national autism therapy provider. Insurance companies require an official diagnosis before they’ll pay for applied behavior analysis, the most common type of autism therapy.

Texas - Families of Kids with Disabilities Unable to Access Medicaid Waivers
The wait time is up to 16 years for some children.
By Tanvi Varma, KVUE News, June 8, 2022
Two-year-old Harvey Foster loves playing with his dad. But unlike many kids his age, he needs help moving around the house. And when he can, it's special. "He loves the independence of being able to get up and move and not have to have someone pick him up and physically move him to another place,” said Harvey’s mom, Jacqueline Skinner-Foster.

It took a year for Harvey's family to finally find out that Harvey's issues with motion are because he has a rare disease called DLG4-related synaptopathy, making it hard for him to learn new things or talk.

"He can't even feed himself right. He can't walk. He'll have toilet issues most likely the rest of his life,” said Skinner-Foster.

Skinner-Foster quit her job to take care of Harvey full-time and signed up for five Medicaid waiver lists that would help them financially. Just last year, they spent more than $10,000 on care for Harvey.

According to Texas Health and Human Services, as of December 2021, the longest Medicaid waiver waiting list was 16 to 17 years long. That waiver is for people with intellectual disabilities who need at-home care like Harvey.
The shortest waiting list is three to four years long and is for medically dependent people under 20.

Texas Health and Human Services says the wait is so long because it is constrained by the amount of money the Legislature allocates, though it does say funding has increased. It said in a statement in part, "Senate Bill 1 provides authority for HHSC to spend an additional $76.9 million in general revenue funds to address interest lists and we plan to fill 1,549 new slots during the 2022-23 biennium."

Harvey is about 500 spots away from getting his turn on one of the lists, and that's after waiting almost a year. So this family waits and makes do while they can, focused on raising money for research into Harvey's rare disease. You can click here to donate.

Florida - Special Olympics Drops COVID Vaccine Mandate After Florida Threatens $27.5 Million Fine
By Jeffrey Schweers and Steven Lemongello, Orlando Sentinel via Disability Scoop, June 6, 2022
Florida threatened to fine Special Olympics $27.5 million for requiring 5,500 participants at the USA Games, which kicked off in Orlando over the weekend, to be vaccinated against COVID-19, prompting the organization to drop the mandate late last week.“There needs to be a choice in this regard,” Gov. Ron DeSantis said at an event in Orlando surrounded by a cheering crowd. “Let them compete. We want everyone to be able to compete.”

In a letter sent to Special Olympics International last Thursday, the Florida Department of Health said the organization’s requirement that athletes show proof of vaccination violated state law. It said there had been several attempts by health officials to avoid imposing fines and bring the event into compliance by not requiring proof of vaccination.
But Special Olympics “was unable to bring the event into compliance for the benefit of their delegates, and reinstate all who were denied access based on proof of vaccination,” the DOH said.

Special Olympics said it had lifted its requirement to show proof of vaccination, and DeSantis confirmed that all athletes, vaccinated or not, would be allowed to compete in the games.

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 join.

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

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.
VOR Bill Watch:
[Please click on blue link to view information about the bill]


Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.
H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 & S. 3238 - The Transformation to Competitive Integrated Employment Act - this bill purports 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 individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.
Help Us Help:
Shop at Amazon?

Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to smile.amazon.com instead of the regular Amazon site, and sign in with your account credentials.
  2. Amazon should then give you a prompt to Select A Charity.
  3. Type into the search box: VOR - Elk Grove Village and click on the Select button.
  4. Now, bookmark the Amazon Smile page and paste it into your Bookmarks Toolbar, so that every time you go to Amazon, you go through the SMILE portal.
Families of individuals with severe/profound intellectual and developmental disabilities and autism need a voice in Washington, D.C.

For 39 Years, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we engaged in over sixty meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
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