December 2, 2022

VOR's 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.

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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities


Save the date:

VOR's January Networking Meeting

Tuesday, January 24

4 pm Eastern, 3 pm Central, 2 pm Mountain, 1 pm Pacific

We invite you to join us on Zoom to meet with like-minded advocates and families of individuals with I/DD and autism.

Our topic this month will be a look at the

118th Congress

and the issues that we may be bringing to their attention in coming session.

The forum will be moderated by Roslyn Leehey. and feature a presentation from Gayle Gerdes of Health Policy Solutions and

VOR's President Joanne St. Amand & Executive Director Hugo Dwyer

Registration will be free.

Stay tuned for more details.

Three Weeks Left to Give!

Our 2022 Year-End Fundraising Campaign

Like many other non-profit organizations, VOR relies on contributions from members and friends to remain viable. And we are now in the make-or-break period.

Most of our contributions are posted during the month of December.

This year we have set a pretty high goal for our fundraising.

We are aiming at raising


We would like to increase our membership by adding 100 new families.

We have a long way to go.

We understand all too well that times are hard, that prices have risen, and that there are other worthy non-profits out there appealing to your generosity.

We believe that we occupy a very special place in this world.

We speak for those who have no voice.

Our mission is to keep you informed, so that you may better advocate for your loved ones with I/DD. 



Special Offer!

For the months of November and December,

anyone donating $250 or more to VOR

will receive a first-edition copy of


new book


Micki addressed VOR members at our 2022 Annual Meeting, telling the story of her 50 years of advocacy and philanthropy, starting with the birth of her son Robert, through her building of 25 homes for people with intellectual disabilities, and sharing her experiences, hopes, and fears as she navigated the political and financial landscape that defines the I/DD system today.

Please click here to Donate

Special Offer Extended!

Give Two VOR Gift Memberships for the Price of One!

From now until December 31st, when you give a friend or family member the gift of a one-year membership in VOR,

you may give another gift membership for free!

This offer applies only to individual gift memberships. You must be a current member to take advantage of this offer, and your gift recipients must either be new members or people whose membership have lapsed for more than one year.

    Click Here to Give Two VOR Gift Memberships     For the Price of One!

The DSP Crisis:

Massachusetts - Shortage of Care Workers Means Heartache, Stress for People with Disabilities and Their Families

By Yasmin Amer, WBUR News (PBS), December 5, 2022

For parents like Anne Kaufman, the moments their kids reach certain milestones are unforgettable. One of those moments happened just a few months ago, when her 22-year-old daughter, Maya, performed on stage before dozens of people.

In knee-high, leopard print boots and a sparkly dress, Maya sang along to "Wunderkind," by Alanis Morissette.

"I was so proud of her and weepy, and I wished I had brought my Kleenex," Kaufman said.

The moment was both happy and sad for Kaufman, who said she wondered, "What could [Maya] have done if she weren't battling all these other challenges?"

Maya has schizoaffective disorder. It's a mental health condition that causes her to have hallucinations and makes everyday tasks difficult. She needs full-time care to get through the basic activities of life.

"If left to herself, she would not shower or take care of her hair or clean up her room or do her laundry," Kaufman said.

Getting Maya confident enough to perform on stage took a lot of work. For six years, she was a student at the Ivy Street School in Brookline, where caretakers and educators helped her develop social skills and a love of art.

But now that Maya is transitioning to adult services, Kaufman is anxious about the future. She worries whether she’ll get to see her daughter reach more milestones.

In Massachusetts, there aren't enough daytime programs available for adults with severe disabilities who need them, or who could benefit from them. Many facilities lack staff and placements can be hard to come by. Since she aged out of school, Kaufman has struggled to find these services for Maya.

"There's the worry that she's sliding backwards because the programs that she might be in — and have to get up for in the morning — are too full or understaffed, and there's no room for her," Kaufman said.

Day programs provide structured activities designed to help people go out and explore their communities, connect with others and learn new skills. Many of these programs have taken a brutal hit since the start of the pandemic. Severe staffing shortages have forced many facilities to reduce services or shut down completely. Kaufman said the situation is already affecting Maya.

Without a structured day program, Maya does fewer activities she loves, like painting. Instead, she often sits alone in her room napping or listening to music. "She's in the home during hours that she ought to be somewhere else with her brain occupied," Kaufman said.

For people who work in the human services industry, which is more than 80% women, it’s no surprise that so many of their colleagues are quitting. The work is difficult, and the median pay hovers around $17 per hour.

Noel Lozada, incoming chapter president of the Service Employees International Union local 509, has worked with adults with developmental disabilities for almost three decades. She's an assistant manager at a residential facility in Danvers.

"The people who are here are burnt out, overworked and underpaid," she said. "I work 90 hours a week. Some days I come in, and I'm completely exhausted."

Lozada works so many hours because she needs two additional part-time jobs to keep up with her bills, which she said is typical for workers in her industry.

She said she loves her job and feels a deep loyalty to the people she cares for, but admitted she’s thought about leaving the field.

"We're nurses, we’re doctors, we're therapists, we're personal shoppers, we're cooks, we're maids," she said. "We wear so many hats, yet our pay matches someone who works at a fast food restaurant."

Residential and day programs, and home care services have long struggled to attract and retain skilled workers to care for people with disabilities. But over the last three years, people who work in this field say the challenges have multiplied. Many workers decided the low pay wasn't worth it, especially with the added health risks of COVID.

Ellen Attaliades, the president of the Association of Developmental Disability Providers, said the current staffing shortages are the worst she’s ever seen.

"What we're faced with is vacancy rates anywhere from 25% to 40% in the different kinds of programs we provide — some as high as 60% in programs like deaf services," she said. "It’s very hard to hire staff."

Attaliades said at least 4,500 individuals with disabilities in Massachusetts are on waitlists for day programs. Others have trouble finding any care at all.

That doesn’t just mean heartache for those thousands of people and their families. It can also bring serious economic consequences.

"It's concerning," Attaliades said. "People can be losing skills and are relying on their family members, or a number of family members have had to quit their jobs to stay home with their adult children."


Wisconsin - Shortage Of Home Care Workers A ‘Real Challenge’

By David Wahlberg, The Wisconsin State Journal via Disability Scoop, December 6, 2022

"More than 1 million additional home care workers will be needed by 2029, on top of the 2.3 million who now support people with disabilities and older adults."

 Born with cerebral palsy, Adrienne Murdent, 59, uses a wheelchair and relies on aides to help her get up, go to the bathroom, bathe, prepare meals and clean her condo on Madison’s Far West Side.

Some of the aides are good but many are unreliable, coming late, leaving early or failing to perform basic tasks, Murdent said. At times, she spends hours waiting to go the bathroom before they arrive.

“I try my best before I get upset, but if I have to get indignant, that’s what I do,” she said.

Home care for people with disabilities, long a challenge, is becoming more difficult, with demand for the care growing, the COVID-19 pandemic worsening the workforce shortage and wages failing to keep up with inflation and other types of jobs, recent reports say.

“As a result, long-term care employers are facing acute recruitment and retention challenges as they compete with employers from other industries that can offer higher wages in a fiercely competitive labor market,” said a report in September from PHI, a New York-based organization that advocates for the industry.

The median hourly wage for home care workers in Wisconsin was $13.65 in 2021, up 16% from $11.80 in 2011, according to PHI. A report in June from the Economic Policy Institute in Washington, D.C., said home care workers in Wisconsin should be paid a living wage of $21.96 an hour. The report called for a federal increase in Medicaid funds, which pays for most of the care.

“In every state, an undervalued home health care workforce — overwhelmingly composed of women, workers of color, and immigrants — is paid extremely low wages to perform vital work,” the EPI report said.

More than 1 million additional home care workers will be needed by 2029, on top of the 2.3 million who now support people with disabilities and older adults, the report said.

In Wisconsin, the shortage of paid home care workers is causing an “unsustainable” strain on unpaid family caregivers, according to a survey released in October by the Survival Coalition of Wisconsin Disability Organizations.

Family members provide 80% of the care for people with disabilities and older adults, with 60% of the family members spending more than 40 hours a week providing care, according to the survey of nearly 500 caregivers.

About 20% of the family caregivers are working less at their regular jobs and about 40% have left the workforce because of caregiving duties, the survey found.


California - To Attract In-Home Caregivers, CA Offers Paid Training — And Self-Care

By Laurie Udesky, California Healthline December 8, 2022  

One November afternoon, Chris Espedal asked a group of caregivers — all of whom work with people who have cognitive impairments, behavioral health issues, or complex physical needs — to describe what happens when their work becomes too much to bear. The participants, 13 caregivers from all over California, who had gathered in a Zoom room, said they experienced nausea, anxiety, shortness of breath, elevated heart rates, and other telltale signs of stress.

“I want to scream!” one called out. “I feel exhausted,” said another.

Espedal, who has been training caregivers for 18 years, guided the class through a self-soothing exercise: “Breathe in for four counts, hold the breath for four, exhale for four.” She taught them to carve out time for themselves, such as setting the goal of reading a book from beginning to end, and reminded everyone to eat, sleep, and exercise. “Do not be afraid to ask for help,” Espedal said. She added that one of the best ways they can care for their clients — often a loved one — was to care for themselves.

The class is a little touchy-feely. But it’s one of many offerings from the California Department of Social Services that the agency says is necessary for attracting and retaining caregivers in a state-funded assistance program that helps 650,000 low-income people who are older or disabled age in place, usually at home. As part of the $295 million initiative, officials said, thousands of classes, both online and in-person, will begin rolling out in January, focused on dozens of topics, including dementia care, first-aid training, medication management, fall prevention, and self-care. Caregivers will be paid for the time they spend developing skills.

Whether it will help the program’s labor shortage remains to be seen. According to a 2021 state audit of the In-Home Supportive Services program, 32 out of 51 counties that responded to a survey reported a shortage of caregivers. Separately, auditors found that clients waited an average of 72 days to be approved for the program, although the department said most application delays were due to missing information from the applicants.

The in-home assistance program, which has been around for nearly 50 years, is plagued by high turnover. About 1 in 3 caregivers leave the program each year, according to University of California-Davis researcher Heather Young, who worked on a 2019 government report on California’s health care workforce needs.

It doesn’t help that the pay is low. According to the state, the average hourly rate for caregivers in the in-home assistance program is $15.83. Rates vary because the program is administered locally, with each county setting its own.

“Training is very helpful,” said Doug Moore, executive director of the United Domestic Workers of America AFSCME Local 3930, which represents roughly 150,000 caregivers in California. “But when the wages are low — and you can make more at Target or McDonald’s and get a signing bonus — then you’re going to go and do that work versus harder work, which is taking care of someone with a disability or a person that’s aging.”


State News:

Washington - DSHS Set to Close Portion of State-Run Rainier School in Buckley

By KIRO 7 News Staff, December 6, 2022

A portion of a state-run school for adults with intellectual and developmental disabilities is set to be closed by next August.

The closure of a portion of the Rainier School, which is located in Buckley, is the result of a settlement between the state’s Health Care Authority and the Department of Social and Health Services, which operates the school.

The school is one of four state-operated residential habilitation centers for adults with developmental and intellectual disabilities, according to DSHS.

The decision affects about 50 residents of the school who participate in Program Area C, or PAT C, which provides specialized care and independent living skills for adults with intellectual and developmental delays.

A 2018 inspection and investigation into the school found repeat deficiencies relating to student care, staffing for field trips, training for clients, not using disposable gloves properly and not notifying parents or guardians when their student was involved in violent incidents.

“This is a sad time for the individual residents and their families as well as the staff who support them,” said Debbie Roberts, DSHS’ assistant secretary for the Developmental Disabilities Administration. “This agreement will allow time to properly help our residents safely transition to a new setting, instead of the 30-day period CMS allows for transitions if we lost (an) appeal. We will work closely with the individuals impacted to develop a person-centered plan, ensuring safe and supported transitions.”

The program area must close on July 1, 2023 or earlier, if the last PAT C resident has transitioned out of the school before that date. Other Rainier School entities are not impacted by the settlement.

Read the full article here

New Jersey - Advocates Demand Cameras in Homes for Developmentally Disabled Adults to Reduce Abuse

By: Dana DiFilippo, New Jersey Monitor, December 5, 2022

When 33-year-old Nick Aquilino, who is severely autistic and completely nonverbal, suffered a broken finger in July 2021, he couldn’t say what happened — and no one at the state-run home for developmentally disabled adults in Cape May County where he lives had answers either.

Two weeks later, the same joint on Aquilino’s other hand got mysteriously injured, and an X-ray revealed another healed fracture his mother never knew about.

So Allen started keeping track, and found Aquilino has had 248 injuries in the past 17 months, averaging an injury every other day. For two-thirds of those injuries, workers at the Woodbine Developmental Center — where Allen supposedly is under one-on-one, 24-hour monitoring —couldn’t explain what happened, she said.

Allen asked state authorities to investigate. But without proof of wrongdoing, they told her they couldn’t hold anyone accountable, she said.

Now, Allen is on a crusade. She wants state legislators to act on a long-stalled bill that would require group homes to install security cameras in common areas and private rooms, if residents request and consent to such monitoring.

"I think Nick’s situation would be perfect for cameras because if they have one-to-one or two-to-one staff there and he’s still getting all these injuries and nobody knows what happens, you

would look at the video, and there hopefully would be your answer,” she said.

Without change, Allen added, “my fear is that he’ll end up dead.”

Calls for cameras in group homes started more than five years ago, when Billy Cray was found dead, face down on a bloody pillow, in the bedroom closet of his Somers Point group home.

An autopsy concluded he died of natural causes. But his mother, Martha, an outspoken disability rights advocate even before his August 2017 death, always suspected foul play because she said Billy, 33, had been repeatedly physically and sexually abused during 25 years of living in group homes.

After helping to pass the 2017 Stephen Komninos Law that strengthened protections for people with developmental disabilities, Cray again set her sights on Trenton, working with lawmakers to craft legislation known as “Billy Cray’s Law,” that would require group homes to install security cameras, with residents’ consent.

First introduced in May 2020, the bill has bipartisan support. It attracted 23 legislators as sponsors in the last legislative session and passed unanimously in two Assembly committees — but failed to move at all in the Senate.

Lawmakers reintroduced it for the current legislative session in February, and 22 legislators signed on as sponsors. But it has yet to be scheduled for a committee hearing in either chamber.

That infuriates Cray.

“How many deaths of a client does it take to pass a law?” she said. “I find that astounding. I find it, oh my god, horrible. People are going to be continuing to bury their children. I’m offended that these are not considered. Bills that protect dogs get passed quicker than a bill passed for the disabled.”

Read the full article here

South Carolina - SC Disability Service Loses License after State Says Client Reportedly Ate Floor Parts, Missed Medications

By Kayland Hagwoodm, WLTX News, December 6, 2022

A company providing support services to those with disabilities is under fire after the State of South Carolina said residents were not properly cared for.

They're called Lutheran Services Carolinas (LSC) and serve those with mental and developmental challenges in North and South Carolina.

The S.C. Department of Disabilities and Special Needs, or DDSN, said improper distribution of medication was just one of the violations it found at LSC.

At an emergency meeting of the DDSN Commission in November, the state laid out its case, saying its concerns started months prior when it was notified a resident reportedly ate part of the flooring.

"Our review revealed a failure to secure and/or administer ordered medications or treatments promptly or at all. A failure to accurately and consistently document known health conditions or diagnoses. A failure to follow up promptly or at all with physicians recommendations to seek services from a specialist such a neurologist," Ann Dalton, DDSN Director of Quality Management, said.

But, an attorney for LSC said the state's argument did not provide a full picture.

"I think if all I knew about this situation was what Mrs. Dalton said, I would burn it all down," LSC Attorney Micah Caskey said, "... but what has been presented to you is not in fact the complete and total story."

News19 reached out to LSC for comment, but did not hear back by story publication December 5.

The commission ultimately voted to revoke all of its licenses to LSC and work toward transitioning residents elsewhere.

LSC also supports refugees, seniors and those in foster care. DDSN said it does not oversee those programs, therefore they will not be impacted.


Virginia - Better Disaster Support for People with Disabilities Sought

By Katie King, The Virginian-Pilot via the Washington Post, December 4, 2022

Sandy Hermann feels a sense of dread every time she hears a serious storm may be headed to Hampton Roads.

Her 26-year-old daughter has a neuromuscular disorder and requires a ventilator, wheelchair and feeding tube. She can’t be on the road for long periods, and standard emergency shelters can’t accommodate her.

With limited options, they almost always hunker down at home when hurricanes come through.

“I’ll just pray that it won’t be a direct hit,” said Hermann, who lives with daughter Felicia in Virginia Beach.

Emergencies aren’t easy for anyone. But disability advocates say disasters of all sorts — be it a hurricane or a pandemic — are generally far more challenging for people with special needs. A state staffer in a newly created position will work with two Virginia entities over the next year and a half to examine the issue and find ways to help.

“We want to promote equality and access and full inclusion for people with disabilities,” said Jamie Liban, who took on the role of emergency preparedness development coordinator in late September.

Liban is embedded with the Virginia Department of Emergency Management but also works closely with the Virginia Board for People with Disabilities. The 18-month position was created using federal funds designated to assist the disabled community.

She said she doesn’t have any recommendations yet; her work is in the early stages, and she’s focused on research. She plans to speak with various state agencies and local-level organizations for their input — and urges others with feedback to reach out.

Teri Morgan, the disability board’s executive director, said the pandemic highlighted the disadvantages disabled people face during emergencies.

She said some residents who can’t drive or easily travel told the board they struggled to reach testing and vaccination sites while others explained updates and information weren’t

Ralph Shelman, executive director of Peninsula Center for Independent Living, a Hampton facility that offers services to disabled people, said one of the biggest challenges is that there’s no one-size-fits-all solution.

Read the full article here

For a related article, please clic here to read the account from our own Mary Kay Cowen on the evacuation of Crossroads LA during Hurricane Ida in the Fall, 2021 issue of the VOR Voice.

Ohio Disability-Rights Group Advocates for More Public Adult Changing Tables

By Danae King, The Columbus Dispatch, December 6, 2022

Kim Boulter has used bathroom floors, angled the back of her van away from onlookers in various parking lots and cleared off conference room tables in order to change her 9-year-old son.

Aiden has developmental disabilities that necessitate him needing protective undergarments that must be changed, and since he was about 3 years old, she has struggled to use weight-limited baby-changing tables typically found in public restrooms.

“Laying someone on the dirty restroom floor to change them is very undignified, and it’s very unsafe for the caregiver lifting that heavy person,” Boulter said. “It’s undignified to have your loved one exposed in public and not be afforded that same privacy that everyone else enjoys in the restroom.”

She began to realize that it will become even more challenging as Aiden grows older and heavier and goes through puberty. So the Lewis Center mother decided to do something to change the circumstances.

In March, she teamed up with Dayton mother Jennifer Corcoran, and the two began advocating through a national campaign called Changing Spaces for more appropriate, safe and private changing tables for their children and other adults and children who need them.

"Jennifer and I are working hard to try to make our whole state more accessible and more inclusive for individuals with developmental disabilities and medical conditions that need this accommodation," Boulter said.

Changing Spaces Ohio was born through their partnership, and it joined chapters in 14 other states. Its goals include spreading awareness about the lack of appropriate changing facilities for older children and adults and advocating for height-adjustable adult-size changing tables in public restrooms.

Because of the necessity of changing her son — and the fact that there are few places where she can do it — her family misses out on many activities, Boulter said. And, as she realized, there are other disabled people, older than Aiden, who have been living at home for years, isolated because they are unable to go out into their community.


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 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

[email protected]

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. 3089 & S. 1544Accelerating Kids' Access to Care Act - This bill requires state Medicaid programs to establish a process through which qualifying out-of-state providers may enroll as participating providers without undergoing additional screening requirements. Among other things, a qualifying provider must (1) serve minors, or adults whose condition began as a minor; and (2) have previously been screened for Medicare participation or for participation in the Medicaid program of the state in which the provider is located.

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid programs.

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.

H.R.6860 & S.3417 - The Latonya Reeves Freedom Act - Supporters of this bill consider it to be the Disability Integration Act of the 117th Congress. The bill calls for the phasing out of intermediate care facilities for individuals with Intellectual Disabilities.

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