April 1, 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

Sunday, May 15, 2022
2 - 5 pm EDT / 1 - 4 pm CDT / Noon - 3 pm MDT / 11 am - 2 pm PDT
On Zoom

Followed by calls to congressional offices throughout the week.

Debriefing sessions on May 16 & 17,
6:30 - 8 pm EDT

This year's initiative will focus on the diversity of individuals within the I/DD population, the need for a full continuum of care, and need to ensure parity for all services - ICF, group home, family home, or intentional community - to meet the needs of all people with I/DD and to allow families to choose from a full range of options.

As always, our Legislative Initiative is geared to helping you become a better advocate for your loved ones with I/DD. We will help our participants to arrange meetings with Congressional Staffers via Zoom, help our members to understand how to use Zoom if they need it, and give you the advance materials and tools to make a strong presentation.
The Sunday Initiative will help prepare you for your meetings with Congressional Staffers. It will be followed by individual and group Zoom meetings with Congressional Offices
May 16 - 19,
with follow-up meetings during May and June while Congress is in session.

Registration is free. Donations are welcome.
You must be a current member of VOR to participate in the Initiative
VOR's Annual Membership Meeting

Celebrate VOR's 39th Year of Family Advocacy

Sunday, June 12, 2022
On Zoom

Due to the ongoing Covid pandemic and the continued lock down of many congressional offices in Washington, D.C., we are holding our annual events online via Zoom again this year.

As in previous years, the Annual Meeting will feature an open meeting of the VOR Board of Directors, reports from states, networking opportunities, and much more!

Details coming soon. Registration will open in May.
2022 Annual Meeting & Legislative Initiative Fundraising Drive

VOR advocates for human rights and high quality care for all people with intellectual and developmental disabilities. What sets us apart from many other advocacy groups is our recognition of those individuals with the most severe and profound I/DD, and the need to preserve a wide range of options to enable them to live their best lives.

Our Annual Meeting & Legislative Initiate are designed to 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.

To continue our work, we are asking members to contribute, yet again, to keep
VOR viable.

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, say 1/4 or 1/3 if you can,
to help us cover the ongoing costs of our advocacy and of maintaining our organization.

VOR has helped so many families over the years. Times change, politicians come and go, policies change, but the need to help families of people with I/DD continues.

Please help us to help you.
Please help us to help families like yours.
National News:
CMS Giving States $110 Million to Boost Money Follows the Person Programs
By Patrick Filbin, Home Health Care News, March 31, 2022

The U.S. Centers for Medicare & Medicaid Services (CMS) announced Thursday it will distribute more than $110 million to expand access to home- and community-based services (HCBS) through Medicaid’s Money Follows the Person (MFP) program.

The MFP demonstration began in 2007 and was funded by the Affordable Care Act through 2016. The goal of the program is to increase the use of home- and community-based services, while allowing people to have greater control over where they receive long-term care.

The program has provided states with over $4 billion for people who choose to transition out of institutions and back into their homes and communities.

VOR understands the value that this program has brought to many individuals, especially the aging community, but we are concerned that MFP has been used to erode, even eliminate the ICF system for individuals with I/DD. We feel the program has exceeded its original goal of re-balancing services between ICF and HCBS offerings and has significantly eroded the ICF system in many states. MFP was meant to give families choice of settings, but in many instances it has given governors and legislators the ability to close ICFs using federal funds to transition people out of the facilities, effectively taking away a family’s choice of an ICF for their loved ones with I/DD.

We fear that this $110 million expansion will result in further closures of both state and privately operated ICFs, and fewer options for families of individuals with server/profound I/DD.
State News
We would like to share this opinion piece with our readers. While it echoes many other editorials asking for increased wages and benefits for our direct care workforce, it stands out by advocating for all caregivers, not only those in HCBS settings, and it adds a few interesting ways to provide funding and incentivize the workforce. The sections in bold have been added by our editor, to bring them to our readers' attention.

Opinion: Iowa's Direct Care Workforce Needs a Transformation, and Now is the Time to Do It
By Maribel Slinde, Des Moines Register, March 31, 2022
The demand for direct care workers, or DCWs, will increase substantially in coming years as the population of older adults and people with disabilities in Iowa increases. DCWs go by different names often determined by where they work and the populations they support or serve. Regardless of their title they provide most of the hands-on care in settings that range from in-home care, assisted living, nursing homes, and hospitals to residential care facilities, supported living, adult day services, and hospices.

Our state has struggled mightily to maintain an adequate direct care workforce. This is a challenge that we share with every state in the country, but an especially vexing problem in Iowa due to our slow population growth, and the increasing number of people needing direct care services further compounded by the pandemic. In fact, 59.2% of Iowa’s nursing homes report they are short-staffed, according to a February AARP Nursing Home COVID-19 Dashboard. Attracting and retaining DCWs to meet Iowa’s present and future needs is impossible with the wages currently paid. DCWs’ median hourly wage is below $15 an hour with 15% living below the poverty guidelines according to PHI National. Twenty-eight percent work more than one job to make ends meet. Caring for and supporting other human beings is a wonderful calling but should not require people to take a vow of poverty to do so.

The American Rescue Plan Act (ARPA), federal legislation passed in 2021, brought large sums of one-time funding into Iowa. A portion of the funds are being used to provide bonuses for direct support professionals (DSPs) who serve individuals with disabilities in some settings. While temporary bonuses help DSPs and their employers, it isn’t a solution and falls short of what is needed. Needed, is a more equitable distribution of wage enhancements across settings and populations served to shore up the direct care workforce. Iowa lawmakers should seize this golden opportunity (pun intended) to use ARPA funds to jump-start the following and commit to their future sustainability:

1) Increase Medicaid reimbursement rates to all health, long-term care, and home and community-based providers. The increased rates should be accompanied with requirements that employers spend the reimbursement increases on improving wages and benefits for the direct care workforce.

2) Exempt all DCWs who have worked for a Medicare/Medicaid provider for at least one year and are making at least $15 an hour from paying Iowa income tax. This would incentivize employers who are not paying at least $15 an hour to increase their wages. In addition to the income tax exemption, provide those same DCWs a tax credit or incentive for each quarter that they remain working in the direct care field. The incentive must be high enough to lift DCWs out of poverty as specified in the United Way’s Asset-Limited, Income-Constrained, Employed report, with updated data due out in 2023, and eventually eliminate reliance on state help for food, housing, health insurance, and childcare.

The following article came to us via our own Jill Barker. The program cited herein applies to people with I/DD as well as the aging community. Indeed, the group home where Jill's two sons live has participated in the program, and Jill has been grateful for the benefits this care has brought to her family.
Michigan - Home-visit Programs Save Money, Free ERs. Many Insurers Don’t Cover Them
By Ted Roelofs, Bridge Michigan, March 25, 2022
Paramedic Shannon Williams has become something like family to 80-year-old Grand Haven resident Leslie Toth.

Over the past few years, Williams and a team of paramedics and nurses have steered Toth through a bout with COVID-19, urinary tract infections, fever and falling blood pressure, kidney stones and a case of pneumonia that could have landed him in the hospital.

“I don’t know where I’d be without it,” Toth said of the paramedic team as Williams stopped by his home to check his vitals one afternoon earlier this month. 

Williams is part of a Grand Rapids-based health management program built around paramedics, nurses and social workers called Tandem365. The mission is to offer support in the homes of more vulnerable residents, most of them elderly and all of them more susceptible to serious illness and frequent hospitalizations.

The result: Far fewer of the team’s patients wind up in hospital emergency rooms than a comparable group of residents who lack such support.
In southeast Michigan, Ann Arbor-based Huron Valley Ambulance yields similar outcomes with an emergency response system that treats many 911-call patients at home instead of taking them to the ER. According to Huron Valley records, its community paramedicine program received just over 3,000 calls from 911 in 2020 ─ and was able to treat more than half of them (1,569 patients) at home instead of transporting them to the hospital.
An average ER charge in Michigan is estimated at nearly $1,300. In contrast, a visit from the Tandem365 paramedic team is about $200.

Aside from cost savings, paramedicine programs free up often-crowded ER rooms for more critical medical cases, while allowing many vulnerable patients to be treated where they are most comfortable, at home. But despite the positive results, there are fewer than a dozen such networks in Michigan.

Maine Group Homes Struggle while Waiting for Promised Funds
By Joe Lawlor, Press Herald, March 27, 2022
The nonprofits that run adult group homes were supposed to receive a boost in state funding in January to increase pay for their workers. But the payments approved by the Legislature in 2021 never arrived, leading some homes to close their doors.

The Mills administration and Legislature are working to fix the problem – caused by an apparent oversight during the legislative process last year. In the meantime, the delay is causing disruptions in a financially fragile network of homes that serve some of the most vulnerable members of society, and in the lives of the residents who have been forced to leave.

“It’s not fair. I have to move out of a place I’ve been living in for seven years. I love where I live,” said Scott Wilson, 32, of Auburn, who has intellectual disabilities.

Wilson is moving from one group home in Auburn to another, although the new placement has not been finalized. The agency that provides the service, John F. Murphy Homes in Lewiston, had to close two group homes this year for financial reasons.

The Legislature and the Mills administration are working to fix the funding mistake. The crux of the problem is that the Legislature approved the reimbursement rate increase to set the wages of direct care workers at 125 percent of minimum wage, but didn’t fully fund the increases in the state’s budget.
Low wages for direct care workers have been a problem for years, pre-dating the pandemic. An overall worker shortage worsened as agencies were no longer able to pay more than a rising statewide minimum wage. That meant workers can snag much less challenging jobs and earn more money. Inflation and gas price increases are also affecting the ability to retain and attract workers.

Todd Goodwin, CEO of John F. Murphy Homes, said no one told nonprofits that the reimbursement boost wouldn’t happen in January. When the money didn’t come in, nonprofits were left scrambling when promised wage increases for employees didn’t go into effect. Communication between the Mills administration and nonprofit leaders about what was going on and whether the problem would be fixed was lacking, Goodwin said.

The services are paid for out of Medicaid, called MaineCare in the state. About 2,500 people are employed in adult group homes, serving a population of about 1,500 adults with intellectual disabilities. In total, about 4,000 adults with intellectual disabilities receive some type of state services, such as day programs.

Funding McNesby Act Critical to Helping Delawareans with Disabilities
By Brendan O'Neill, USA Network via Delaware Online, March 31,2022
The bad news is that our state is facing a crisis: Delaware citizens with intellectual and
developmental disabilities (I/DD) are not getting the care that they need.

The good news is that we have the money and the mechanism to solve this crisis.

In 2019 Delaware’s General Assembly passed, and Governor Carney signed into law, the McNesby act. The idea behind the McNesby Act is simple and it is profound: As a state, we should provide funding to ensure that the most vulnerable among us, those living with I/DD, can lead lives of dignity.

The most meaningful way we can help people with disabilities to live their best lives is to significantly increase the funding for Direct Support Professionals (DSPs). DSPs are essential to full and inclusive lives for people with disabilities. They work inside the home on the most basic needs of daily life that are impossible for many to do by themselves: getting dressed, eating food, and using the bathroom. Equally important, they work outside the home to facilitate community participation, serve as job coaches to enable people with I/DD to work meaningful jobs, and foster inclusive lives for those in their care.

By not allocating all the funding authorized by the McNesby Act, we have failed to build upon the promising first step of its passage. Because of this failure, service providers, including Autism Delaware and others, cannot afford to pay DSPs a living wage. The low wages and demanding work has driven many DSPs away from a profession that they love and the people who need them. DSP vacancies are at an all-time high and the lack of care is having a devastating impact on Delawareans with disabilities and their families.

The time is long past due to invest in the caregiving workforce — paying them a professional, family-sustaining wage for their physically and emotionally demanding work. This is the best way to ensure that people with I/DD get the services they so desperately need. DSPs not only care for those with I/DD, they allow for their family members to work, to care for other children, and to live a full life.

It bears repeating that we are at a crisis point and we have a choice to make. One choice is the status quo: continue to pay DSPs a non-living wage while allowing the standard of care for those with IDD to slip. The other is to fully fund the McNesby Act, to pay caregivers a living wage, and ensure that the most vulnerable among us get the care they deserve. If we choose to fund the McNesby Act by making a $16.5 million investment, Delaware is guaranteed $21 million in matching federal funds according to figures presented by the Division of Developmental Disabilities Services during the public hearing on the state budget. If we choose not to, the crisis will only get worse and the federal matching funds disappear.

Our state has the money to fully fund this program. Our budget surplus makes that clear. What is not yet clear is whether we have the moral conviction and political will to ensure that our most vulnerable citizens receive the care that they need. We believe that the General Assembly will show that conviction and they will fully fund the McNesby Act. For people like Lorraine, for families like ours, and for the DSPs who help us make it through the day, it is imperative that they do.

Ohio - Judge Creates Program to Keep People with Developmental Disabilities out of Jail
By Homa Bash, News 5 Cleveland, March 31, 2022
A courtroom can be an intimidating and scary place regardless of what you are there for, and for people with developmental disabilities, it can add another layer of distress.

A few years ago, Akron Municipal Court Judge Ron Cable started RISE Court to help human trafficking survivors caught up in the criminal justice system.

Now, he’s created the “Connect” program, focused on individuals with developmental disabilities.
“I think it's unique in that it serves a very vulnerable group of people,” Cable said.

According to the court, there are roughly 40 to 50 people with developmental disabilities charged with misdemeanor crimes in Summit County each year — like 22-year-old James Stohler, who is set to graduate from Connect in just a few weeks.

“I’ve had a couple anger issues in the past,” James explained. But now, he says having people surrounding him who care and look out for him has made all the difference. “It’s kind of like having a family around you,” added James.
And speaking of family, the program is personal for Cable.

“I have a son who has autism, he’s 24 years old, he has a huge heart,” Cable said. He's also near and dear to Magistrate and mom Jennifer Towell’s heart.

“Our middle son is 11 and his name is Joey,” Towell said. “Joe was born with Down Syndrome.”

Here’s how “Connect” works:

Participants have a developmental disability diagnosis and voluntarily take part in the one-year probation program as an alternative to jail for minor misdemeanor crimes. If they meet all the requirements and stay out of trouble, their records will be sealed.

“They really don’t need to be placed back in jail,” Cable said. “It’s not the proper place for them.”

Vermont Discontinues Mobile Clinic for Children
By Nora Doyle-Burr, Valley News, March 29, 2022

A state-run mobile clinic that evaluated children for developmental disabilities such as autism is closing, and the Vermont Department of Health is now directing families whose children need such evaluations to the University of Vermont Medical Center in Burlington.While some families can get these evaluations — which can take two hours — at Dartmouth-Hitchcock Medical Center in Lebanon, both academic medical centers have waits of as much as a year.

In the meantime, families and those trying to support them while they await a diagnosis are left to manage children’s behaviors without a complete understanding of what might be causing them.
“I do not have a lot to say beyond how desperate we are for care of our neurodiverse pediatric patients,” Dr. Rebecca Yukica said of the clinic’s closing, which the state’s maternal and child health director announced in a March 21 letter to community partners. “There is a tremendous need. This is an area of great hardship.”

Yukica owns Upper Valley Pediatrics, which has offices in East Thetford and Bradford.
The Child Development Clinic at Children with Special Health Needs and the Vermont Department of Health has operated for more than 60 years, providing evaluations for children with neurodevelopmental delays through a network of community-based, regional clinics, in collaboration with local and statewide service providers. In addition to autism, the clinic evaluated children for cerebral palsy, intellectual disabilities, genetic disorders, learning disabilities and ADHD. At its height, the clinic was evaluating as many as 400 children annually, according to Ilisa Stalberg, maternal and child health director at the Vermont Department of Health. Amid the pandemic, the clinic had stopped doing evaluations.

The clinic was once staffed by a state-contracted pediatrician who traveled throughout Vermont offering pop-up services, Stalberg said. Now that the state-contracted pediatrician has retired and UVM Medical Center has recruited a pediatrician who specializes in child development and behavior, the state is shifting to this Burlington-based model.

“It’s been a long time coming,” Stalberg said.

She acknowledged that the shift “will leave a gap for families” in the number of available spots and in the convenience of their location for those who live a distance from Burlington with varying access to transportation. She said the state is working to sort out whether there is a way to offer a mid-level evaluation for children with less complex conditions through community-based providers.

News of the clinic closing left some concerned that the change will reduce access to already scarce resources for families. It comes at a time when parent-child centers such as The Family Place in Norwich are struggling to meet high demand for support for families as many have been isolated for two years. Some continue to be isolated as Covid-19 vaccines for children younger than 5 are not yet available and child care spots remain hard to come by.

Kelly French, a nurse who serves as The Family Place’s Children’s Integrated Services Early Intervention Program supervisor, said the announcement of the clinic’s closing comes as early intervention programs — which serve children ages birth to 3 — across the state are seeing high caseloads, which has driven up referrals for developmental evaluations.

“I can’t remember when we’ve had a quiet period,” French said.

International News
United Kingdom - Anger Over Plan to Close Centre for Adults with Learning Disabilities
By Georgia Roberts and Sandish Shoker, BBC News, March 29, 2022
The Whitemoor facility in Belper is one of eight centres proposed for closure by Derbyshire County Council.

More than 2,000 people have so far signed a petition against closing Whitemoor.

The county council said the eight centres were under used and shutting them would free up cash to redesign the service.

Francine and Ashley Franklin are full-time carers for their 38-year-old daughter Claire, who has Down's syndrome and autism, and has attended Whitemoor in John O'Gaunt's Way for 15 years.

"She's a creature of routine and to be torn away from a place like Whitemoor, which she regards as her second home almost, would be a terrible wrench for her," said Mr Franklin. "I don't think she would be able to cope."

"She's not got any siblings living at home with her anymore. So she is very much an isolated character at home. When she goes to Whitemoor she's totally different."

The couple said the council's claim that use of the service was dwindling was "rubbish".

"There are a lot of people like Claire. Not everybody can live independently," said Mrs Franklin.

"The aspiration is wonderful, but she can't. So we need to have something in place. There are lots and lots of people out there who want that service, and they've been denied. These are people with no voice. They are individuals who need to be looked after."
Helen Smith's 30-year-old son, Daniel, who has severe autism and learning disabilities, attends the same centre twice a week.

She said the council showed a "total lack of understanding" in their proposals.

"The people making the decision have no idea of the impact it will have on the service users and their families and, unfortunately, we don't feel they care either," she said.

"For some, such as Daniel, it is their parents and carers who have to make the choices and decisions for them and, unfortunately, we are the people who are not being listened to."

Daniel Smith attends the Whitemoor centre two days a week

If the centre closed, Daniel's family said he would have to travel 27 miles from the family home in Woodville, Swadlincote, to the next nearest centre in Alfreton, which his mother said would be difficult as he "cannot cope with change".

"Because of his autism Daniel finds it difficult to make friends but at Whitemoor he is surrounded by caring staff and other service users who he may not interact with, but he watches them and listens to them and takes it all in.

"If these closures materialise, then there are no appropriate services we can access, and our son faces a lifetime of solitude and isolation."

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, our Executive Director Hugo Dwyer, our legislative policy advisor Gayle Gerdes, Presidents Sam Friedman and Harris Capps, and members of the VOR Board of Directors have participated in over fifty 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.

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.


S. 3417 - The Latonya Reeves Freedom Act of 2021 - This bill may be seen as the offspring of the Disability Integration Act from the 116th Congress. It misrepresents Olmstead, and contains provisions that would be harmful to the existence of ICFs, including a section that would promote lawsuits against larger congregate care facilities.

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.
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.

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]
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
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