November 12, 2021
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
World Kindness Day
Saturday, November 13, 2021

World Kindness Day is an international holiday that was formed in 1998, to promote kindness throughout the world and is observed annually on November 13 as part of the World Kindness Movement. It is observed in many countries including the United States, Canada, Japan, Australia and the U.A.E.

World Kindness Day presents us with the opportunity to reflect upon one of the most important and unifying human principles. On a day devoted to the positive potential of both large and small acts of kindness, try to promote and diffuse this crucial quality that brings people of every kind together.

Gathering for the months ahead...
VOR's 2021 Year-end Giving Campaign

Act Now to Double Your Donation!
We have great news! A family group that has been a long-time supporter of VOR has made a generous offer - they are willing to match dollar for dollar the first $5,000 of donations received between now and Thanksgiving!

This gives us all a great opportunity to reciprocate their kindness. Let's make sure that we can meet, and exceed, this goal for the next two weeks. Any donations made online or postmarked on or before November 25th will qualify for this match!

So don't delay! Help us to start off our Year-end Giving Campaign with a gift of gratitude. And let's all share in this very Happy Thanksgiving together!
Last notice for:
VOR's Nationwide Networking Meeting
via Zoom

November 15, 2021
7:00 pm Eastern, 6:00 pm Central, 5:00 pm Mountain, 4:00 pm Pacific.

VOR advocates for a full continuum of care for all individuals with disabilities. We believe that one size doesn’t fit all. Many of our members have loved ones with severe or profound disabilities- often with medical or behavioral issues- a population that is so often ignored.
After a brief introduction by one of our board members on some of VOR’s initiatives, we would like to hear from you. What is going on in your state? How are the needs of your loved ones being met (or not)? What changes would you like to see that would benefit your family member? How are you advocating for your family? And any other comments that you feel are relevant.
We’re hoping for an informal, relaxed conversation. We’re all in this together!

Enrollment is limited.

Please RSVP to [email protected] to receive a Zoom invitation.
National News: Opinion
The Reverse Field of Dreams Fallacy in Disability Policy
Even if we don't build it, they will still come.
By Amy S. F. Lutz, Psychology Today, November 8, 2021

The logic that drives much contemporary policy for the intellectually and developmentally disabled continues to baffle me. I’ve written before about one persistent refrain in these debates – I don’t want X, so no one should have X – but now I’d like to address a different assumption that, at the risk of dating myself, I’m going to call the “Reverse Field of Dreams Fallacy”: If we don’t build it, they won’t come.

I’m seeing this more and more recently. Many disability advocates argue that we should completely get rid of – and you can fill in the blank here, guardianship/special ed classrooms/sheltered workshops/Intermediate Care Facilities and all larger residential settings – based on the assertion that nobody really needs such intensive supports. Instead, these advocates offer the vision of even the most profoundly intellectually and developmentally disabled children flourishing in inclusive classrooms and adults thriving in their apartments, holding competitive, minimum-wage jobs, and exercising their autonomy with a little guidance from friends or family members through supported decision making.
It’s a lovely vision – I completely understand why so many policymakers are listening. Who doesn’t wish that for everyone? If only wishing made it so.

However, the truth is that intensive, disability-specific supports exist because they are desperately needed – particularly by those with the dangerous behaviors that are often associated with severe autism.

Last week, The Philadelphia Inquirer featured a story about 12-year-old Emmett Tolis, a severely autistic boy who has been languishing at the world-renowned Children’s Hospital of Philadelphia (CHOP) since July because of aggressive behaviors that are not only too unsafe to manage at home, but, ironically, preclude his acceptance by providers who, with limited resources and huge waiting lists to draw from, are heavily incentivized to choose the easiest clients. (Note: See article below in State News)

The lack of appropriate services for Emmett is no accident. Still, it is the completely foreseeable consequence of policies issued by the Office of Developmental Programs (ODP) in Pennsylvania, where I also live. ODP has fought hard (and is still fighting) to close our state developmental centers, sheltered workshops, and virtually all intensive, disability-specific settings. The agency “is now phasing out ‘Day Habilitation Programs’ and replacing them with Community Participation Supports,” regardless of whether it is safe for participants with aggression and self-injury to spend most or all of their days in public spaces, or whether such unstructured, over-stimulating environments might even exacerbate those behaviors.

Housing regulations similarly mandate that new residential settings be “integrated and dispersed in the community in noncontiguous locations” and “may not exceed a program capacity of four,” even if larger settings might better support the diverse staffing needs (including, potentially, direct support professionals, behavior specialists, occupational therapists, nurses, etc.) of the most severely impaired.
Keep in mind these limits are not mandated by the Centers for Medicare and Medicaid Services (CMS), which has explicitly called for an individualized and outcome-oriented approach to service provision.

But states are permitted to be more restrictive than required by the federal government; ODP is exercising that right; and families like the Tolis’ are left with no option besides trying to manage extraordinarily dangerous behavior at home – which is what they will be doing going forward, as CHOP decided to discharge Emmett with no explanation and no plan.

Suppose you’re skeptical about how violent an autistic child can be. In that case, the Inquirer article also included the heartbreaking story of Zoe Potack, an eleven-year-old whose self-injurious behavior is so intense that she has permanently blinded herself.

Importantly, these are not isolated cases. Last month, a consortium of organizations, including the National Council on Severe Autism (of which I’m a board member) and the Autism Science Foundation, released a short video with the express purpose of showing those who have never experienced it what extremely aggressive and self-injurious behavior in autistic kids and young adults look like. I think it should be required viewing for everyone involved in crafting policy for this population.

Need for a Continuum of Care

This is not just a Pennsylvania problem. In 2017, Kaiser Health News reported that an increasing number of autistic youths were “spending weeks or even months in emergency rooms and acute-care hospitals, sometimes sedated, restrained to mesh-tented beds” because of a lack of appropriate services. Between 2009 and 2014, the number of autistic individuals seen in hospital ERs almost doubled, reaching nearly 160,000, with the most prolonged stays clocking in at nearly a year.

It’s also not just an autism problem. As has been well documented, the closure of psychiatric hospitals and the exclusive focus on community-based mental health care has resulted in a phenomenon known as psychiatric “boarding,” where patients with severe mental illness are forced to wait for days in ERs because of a lack of inpatient beds. More broadly, deinstitutionalization has resulted in dramatically increased rates of homelessness and incarceration.

My Brother Is Still Unvaccinated Because Our Medical System Is Ableist
By Amanda Calhoun, Time Magazine, November 8, 2021

A recent study showed that adults with autism spectrum disorder, intellectual disability, and other mental illnesses are at higher risk of contracting COVID-19 and having more severe cases of the virus. Based on my brother’s experience, I know one reason why: ableism.

“He needs sedation!” Mom explained to the medical team. “He is not going to tolerate you placing an IV. He may hurt someone!”

My brother has limited verbal ability, so Mom spoke for him. The medical team tried to place the intravenous line anyway. My brother immediately began defending himself, hitting a nurse and scratching the physician. A medical tech walked by the hospital room, his beady blue eyes landing on my chestnut-skinned brother with a sneer. The medical tech did not see a struggling man with autism spectrum disorder—my brother—he saw a problem. “You need any help, doc?” asked the medical tech poking his head through the doorway. “No, we’re okay here,” the doctor responded. My brother froze mid-struggle. His deep brown eyes rested on the blue eyes of the medical tech. “Help, please,” my brother said clearly.

When patients with autism access the medical system, it often fails them, as it does my brother. Physicians fail to give them the support they need to feel safe, and staff fail to give them the compassion they deserve. When I became a doctor, I watched colleagues sigh when a patient with autism was admitted. “Ugh, this is going to be a lot of work.” “Yes,” I replied, frowning at my colleague. “Yes, it is.” 2.2 % of adults currently have autism spectrum disorder. 1 in 3 people with autism have a severe form—and are minimally verbal—yet severe forms of autism have been understudied. Adults with severe autism are even less studied, as the majority of research studies focus on children and adolescents with autism, leaving adults out of the picture. Patients with autism are more likely to have other medical and psychiatric illnesses, some of which could be averted or attenuated, with preventative care. Yet, they are less likely to receive routine healthcare from vaccinations to dental care, and their use of medical services declines as they transition into adulthood. Sadly, most healthcare providers are largely unprepared and untrained to treat patients with autism, leading to poor outcomes.

Even before the pandemic, my brother struggled to receive decent medical care. Once COVID-19 came, the medical system did not treat him any better. When the vaccine was rolled out, he was excluded even as I watched my parents (a physician and a pharmacist) relentlessly advocate for him to receive it. As his guardians, they make medical decisions for my brother because he does not have the ability to make choices for himself. Vaccine clinics turned my brother away because he would require sedation or a physical hold to tolerate a needle being stuck in his arm. His dentist, who routinely sedates him for his annual teeth cleaning and medical labs, did not know how to gain access to the vaccine. His primary care physician dropped the ball too, not even bothering to coordinate my brother getting the shot. I checked autism advocacy websites, full of helpful documents promoting vaccination in individuals with autism. There were no resources for individuals with autism who were denied the vaccine. I left voicemail messages for autism advocates, but never heard back.

Plenty of reporting has been done about the profile of the unvaccinated. But, the missing pieces of the story are the many unvaccinated individuals who have severe forms of autism spectrum disorder, intellectual disability, or other mental illnesses.

To be sure, vaccinating adults with severe autism and other mental health disorders, would require additional staff, either to physically hold the patient or to ensure that they have no adverse reactions to sedation. And if the moral weight of discrimination due to disability does not sway you, then let’s look at the costs and benefits. If these individuals are not given special accommodations, and are denied the vaccine, they are 29 times more likely to be hospitalized if they contract COVID-19, adding to the billions of dollars in healthcare cost and burden on medical staff.

Primary care physicians should be spearheading this care coordination, no doubt, and the burden should not fall on emergency department physicians and staff. Additionally, the federal government should give additional funds to federally qualified health centers, enabling them to provide special accommodations for disabled individuals to receive the COVID-19 vaccine. The federal government could also provide additional funding to emergency departments, so they can get the staffing and support needed to administer the vaccine safely to disabled patients. Either way, the clock is ticking for individuals like my brother, and I hope that the medical system steps up to the plate soon. My brother is still not vaccinated, and he deserves to be.

State News: Emergency Rooms Are Not Long-term Care
Pennsylvania - Nowhere to Go
By Jason Laughlin, The Philadelphia Inquirer, November 5, 2021
On the 110th day of 12-year-old Emmett Tolis’ residence at Children’s Hospital of Philadelphia, his mother returned from a brief meeting with a friend and found her son again strapped to his hospital bed.

He had another aggressive outburst while she was away, expressions of frustration that cause Emmett to lash out at people around him. More agonizing than seeing Emmett in restraints, Elizabeth Tolis said, was that he didn’t seem to mind it. The process of being bound to his bed had become familiar to her severely autistic, ritual-craving son.

“That’s what chokes me up. He doesn’t even really have an understanding,” she said. “Humans are not supposed to be strapped like that.”

Since he arrived at the hospital July 8 from his home in Jamison, Bucks County, a child who loves swimming and roller coasters has not stepped outside once. He has been put in restraints as frequently as once weekly through the course of his stay to cope with his aggression. His parents try to keep him active with art projects, an exercise bike, and walks around the hospital floor, which are marked by his insistence on greeting people he passes and touching specific objects. Most of his day he spends with headphones on, playing games on a smartphone.

Emmett went to the hospital as an interim step on the way to finding residential treatment, his family said, but he is still there because there is nowhere else for him to go.

“He is warehoused. He’s like inventory at an Amazon plant,” said George Tolis, Emmett’s father. “He’s just sitting there.”

The family is wary about taking him home, concerned his aggressive episodes will dominate the household and risk harm to himself. Six residential treatment facilities have turned him down for lack of space or the complexity of his condition. One told his mother a bed wouldn’t be available until December 2022.

Now, Emmett’s time at CHOP is ending and his family must take him home, with fears he will do no better than when they took him to CHOP.
Dramatic as their experience sounds, it’s not unique. The state Office of Developmental Programs doesn’t track the waiting lists at 33 residential treatment facilities that serve children with intellectual disabilities and autism in Pennsylvania, but people in the provider industry said they are worse than ever. Months-long waits, like the Tolis family’s, are becoming more common.
“We recognize the strain this puts on families,” said Ali Fogarty, a spokesperson for the Pennsylvania Department of Human Services. “We are working to make more services and supports available to help families waiting for a residential placement.”

Tami D. Benton, CHOP’s psychiatrist-in-chief, testified before Congress in April about the crisis in behavioral health care for children exacerbated by COVID-19.

“Even before COVID, the shortage of options, particularly across the continuum of care, were staggeringly limited,” Benton said in her testimony. “It is, in fact, hard to overstate this concern.”

Benton described “extreme shortages” in behavioral care for children. That is coupled with a lack of psychiatrists, psychologists, and other professionals at facilities — a long-term problem that experts blame in part on the low rates paid by Medicaid for this high-stress work. COVID-19 worsened the situation. Behavioral care facilities in the state have almost a quarter of their staff positions unfilled, said Mark Davis, president of Pennsylvania Advocacy and Resources for Autism and Intellectual Disability, compared with 19% pre-pandemic.

Hospitals have increasingly been a last refuge. Hospital stays for people with autism of all ages grew by 43% from 2016 to 2019, according to the most current data from the federal Agency for Healthcare Research and Quality. Anecdotally, experts say the pandemic likely has only accelerated the trend. A CDC study found that more children are landing in emergency rooms with mental health problems, and treatment options are sorely lacking. CHOP has seen a 60% increase in psychiatric emergency visits in recent years, Benton said.

New Hampshire - His Parents Brought Him for Urgent Psychiatric Help. Then, He Waited in the Emergency Room for Nearly a Month.
By Teddy Rosenbluth, The Concord Monitor, November 6, 2021
Jeremy Sheppard returned from visiting his son at the emergency room last week to his quaint brick house in Derry.

“He’s really depressed, and it’s going not well for him right now,” he told his wife. “Twelve days in isolation will do that.”

Sheppard and his wife, Kristen, brought their 17-year-old son to the emergency room in late September to get him mental health treatment at an inpatient psychiatric facility.

After two weeks at Parkland Medical Center and twelve days at Portsmouth Regional Hospital, their son Christopher was still waiting in a windowless room outfitted with a hospital bed, a television and a two-way mirror for nurse supervision.

Christopher, who had intellectual disabilities, cognitive delays and PTSD, struggled in the emergency room, where he spent most of the day alone. Screaming coming from down the hall kept him up at night. The constant door-slamming from the nurse’s triage station across the hall made him agitated and aggressive.

“This is what solitary confinement is, minus the TV,” Kristen Sheppard said.

New Hampshire has seen a record number of children in need of urgent mental health care over the last year— the number of children calling a state-wide crisis hotline increased by nearly 20% in 2020. The demand for youth mental health beds has dramatically outpaced the state’s resources, creating a backlog of children in hospital emergency rooms, which often do not have the resources to care for children in psychological distress. Last week, 18 children were on the waiting list for an inpatient psychiatric bed, according to NAMI New Hampshire.

When Christopher was younger, Kristen could calm his meltdowns by wrapping her arms around him, barrel rolling him onto the carpet and holding him until he settled. As he grew into a 230-pound young man, his mother’s strategies no longer worked.

Unintentionally, he became dangerous to his family while struggling with frustration and anger he couldn’t understand or control. After he pulled an airsoft gun on his brother, which looked almost identical to a real 9mm pistol, the Sheppards decided it was no longer safe for him to live at home.

Kristen said she worries that in the pursuit of help for her son, they have done irreparable damage to his mental health.

Thirteen days into his stay at Parkland Medical Center emergency room, Christopher began hallucinating, something he never experienced before arriving at the hospital.

“When I saw him, he was very scared,” Kristen said. “He kept saying, ‘The demons keep moving around, and they keep telling me to kill myself and if I don’t kill myself, they’re gonna kill me.’ ”
Jeremy and Kristen said they feel that many of Christopher’s basic needs have not been met during his hospital stays. They said he was taken to shower three times over the course of 14 days at Parkland. A spokesperson from the hospital did not respond to questions about the frequency of showers minors are entitled to during their stay.

Through a spokesperson, Dean Carucci, the CEO of Portsmouth Regional Hospital, and John Skevington, the CEO of Parkland Medical Center, said limited beds at Hampstead Hospital, a youth mental health facility, often causes children to wait in emergency rooms for “more time than is ideal.” The hospital compensates for this by providing individualized therapy on a case-by-case basis, they said.

“The only hospital appropriate for children and adolescents in the state of New Hampshire is Hampstead Hospital, which often has a long waitlist for admissions,” they said.

Becky Whitley, a State Senator from Hopkinton, said the best way to decongest the emergency rooms is by expanding community mental health resources that can prevent some children from going to the hospital in the first place.

Senate Bill 14, passed into law in June 2019, allocated funding for mobile crisis teams, a 24/7 hour service that dispatches a clinician and a “peer support specialist” – someone recovering from their own mental illness – to children in need. She said the Department of Health has been slow to realize the law’s goals.

“There has been movement to get the mobile crisis up and running,” she said. “But certainly right now, you cannot say that children have statewide access to mobile crisis within one hour.”

Another important piece of limiting the number of children waiting in emergency rooms is increasing the number of psychiatric beds devoted to youth mental health care. Officials at Hampstead Hospital, a private inpatient psychiatric facility for children, said the facility has served an average of 40 children at a time, though the program has the capacity for more than 100 beds. Service was limited due to staffing shortages. Gov. Chris Sununu announced earlier this month that the state was in the final stages of purchasing the facility to open up additional beds for children.

After 28 days in the emergency room, Christopher was placed at Hampstead Hospital. Though he has finally moved onto the next stage of his treatment, Kristen said the experience has inspired her to push for change in the mental health system.

“He just said, ‘I want to go home, I want to go home,’ ” Kristen said.

“He said it isn’t fair, and he’s right.”

Happier State News:
Maryland - New Sensory-Friendly Play Experience Opens at Centennial Park in Howard County
Press Release, Howard County, Nov. 8, 2021
Howard County Executive Calvin Ball today celebrated the opening of Centennial Park North’s new Sensory-Friendly Play Experience playground. Inclusive amenities ready to be used includea lower overhead ladder, two expression swings, a Zero-G swing chair, a Merry-Go-All, a nonverbal communication board and musical instruments. Ball also announced the second phase of Park’s North side renovation, which includes a sensory trail, set to open next summer.

Centennial Park North’s new Sensory-Friendly Play Experience playground is the first PlayCore National Demonstration Site
in Howard County and was designed with PlayCore’s principles of fairness, inclusion, independence, comfort and safety.

“After we determined that the existing playground at Centennial Park North should be replaced instead of repaired, we began to consider how we could follow the standard set by the Laura’s Place playground at Blandair Regional Park,” said Acting
Bureau Chief of Capital Projects, Parks Planning and Construction Bob Linz. “This Sensory-Friendly Play Experience will provide even more recreation opportunities for our park visitors and their families.”

In the second phase of the playground’s Sensory-Friendly Play Experience, sensory play
equipment pods will be designed in cooperation with a stakeholder planning group comprised of residents, parents of consumers, disability advocates and Recreation & Parks staff members. Construction on this phase is expected to begin in late spring and weather permitting, should be completed in summer 2022. Once complete, the area will also include a paved pathway and fence that encircles the playground and amenities.

Missouri - Elks Mobile Unit Offering Free Dental Care this Week
News Tribune, November 9, 2021

Elks Lodges are improving smiles for people with developmental disabilities in Central Missouri. The Elks Mobile Dental Unit began offering free dental care for qualified clients Monday at the Jefferson City Elks Lodge 513 at 901 Ellis Blvd.

Elks have reached out to sheltered workshops, such as Capital Projects in Jefferson City and Gateway Industries in Eldon, and informed them of the unit's availability, said Cindy Smith, a dental assistant on the vehicle.

Smith has been setting up appointments for this week. She can be reached at 573-690-6003.

Appointments are available Monday through Thursday. Hours depend on services needed.

Staff offer cleanings, X-rays, fillings and selective extractions in the mobile treatment room. The vehicle includes a wheelchair lift, which makes it accessible.

In addition to people with developmental disabilities, Elks will accept clients who are in extreme financial distress who have found it impossible to receive dental care anywhere else. These individuals should be given a letter of referral from the lodge.

Individuals who are to receive treatment will be screened for eligibility and ability to receive treatment in a mobile clinic with the aid of local anesthesia, when needed.

Wisconsin - NIH Grant to support Groundbreaking Stem Cell Models for Down Syndrome at UW
By Tara Disanayaka, Badger Herald, November 11, 2021
'[This] work can significantly advance our understanding of the cognitive and health conditions seen in individuals with Down syndrome,' UW expert says

Anita Bhattacharyya, a professor of cell and regenerative biology at the University of Wisconsin, is doing innovative research to understand how changes to brain development in the womb lead to intellectual disability in people with Down syndrome at the UW Waisman Center.

This approach aims to shed light on how brain development in individuals with Down syndrome differs from typically developing individuals and find potential targets for therapy.

Down syndrome is a genetic disorder that occurs when abnormal cell division causes an extra chromosome to be added to chromosome 21, also known as Trisomy 21. Though the genetic cause of Down syndrome and its related phenotypic effects are well studied, there are some gaps in the understanding of how prenatal brain development of Down syndrome differs from those who do not have the disorder.

The researchers received an $11 million Transformative Research Grant from the National Institutes of Health, also known as NIH. This grant is awarded to research that the NIH believes is highly innovative and is likely to have a large impact on the biomedical and behavioral fields.

The main method of studying the disorder currently uses animal models which do not accurately represent how the disorder presents in humans. Bhattacharyya and her collaborators are developing a new technique of modeling the prenatal Down syndrome brain based on human-induced pluripotent stem cells, also called iPSCs.

According to the NIH, since scientists are unable to manipulate human development like they can with model animal organisms due to ethical reasons, much of the information about development has been extrapolated from model organism experiments and studies. While these models have been essential in studying development, iPSCs offer a new way to study embryonic development by using human cells instead of model organisms.

Human induced pluripotent cells start as either adult skin or as blood cells that can then be reprogrammed to become almost any other cell type. Bhattacharyya and her colleagues are using iPSCs from adults with Down syndrome and reprogramming them into neuron cells — cells located in the brain, specifically the prefrontal cortex — to study how Down syndrome neuronal developmental pathways diverge from the neurotypical pathway.

“Although Down syndrome is quite prevalent and we know a lot about individuals with Down syndrome … what we don’t have a good understanding of is how brain development in Down syndrome is different,” Bhattacharyya said.

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

  1. Just go to instead of the regular 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. Then paste a link to AmazonSmile into your bookmarks, and use that link every time you shop!

Thank you for supporting VOR!
Staffing Shortages: The Toll of the DSP Crisis
Rhode Island - Staffing Shortage prompts Homes for Mentally Ill to Close
AP NEWS, November 11, 2021

Two privately run group homes for the severely mentally ill in Rhode Island are closing at least temporarily and the residents are being moved to another facility in response to a severe staffing shortage, officials say.

Twenty-one residents from the Singleton House in Burrillville and the Chicoine House in Cumberland were being moved Wednesday to a temporary home in a closed state property in Smithfield, The Providence Journal reported. (* See below)

“There is a public health emergency and a staffing shortage, and even staffing agencies cannot meet all the staffing needs,” said Randal Edgar, a spokesperson for the state Department of Behavioral Healthcare, Development Disabilities and Hospitals, the agency that oversees and pays for the group homes. “In this case, the provider is moving clients from two smaller facilities into this larger facility because it will allow the provider to pool staff.″

Note: Rhode Island closed its state-operated intermediate care facilities for people with I/DD a few years ago and privatized all services.
New York - Group Homes in Crisis: East End Homes For People With Disabilities Struggle With Staffing, Funding
By Jennifer Corr, Dan's Papers, November 6, 2021

Advocates for people with disabilities have been sounding the alarm for months that East End group homes are in crisis amid staff shortages, but the problem is not going away, experts warn.

Fueling the fire are New York State budget cuts that have limited raises offered by nonprofit agencies that run group homes, and the ongoing coronavirus pandemic, which prompted funding declines and staff shortages across an array of industries.

“The problem you have now, with all these mandates and cuts, 80% of our budget is salaries,” said Charles Evdos, the executive director of the agency Rise Life Services, based in Riverhead. “The problem is, we want to raise the direct care workers to $20 an hour. The state doesn’t give us the money to do that. Basically, agencies on Long Island are paying anywhere from $14.50 to maybe $16. Agencies can’t afford to pay the $20 an hour.”

Nearly 25% of direct support professionals — staffers who work with people with disabilities both in group homes and other settings — positions are vacant across New York State, according to a recent statewide survey conducted by The New York Disability Advocates. The survey found that nearly 70% of agencies reported senior staff had to cover shifts due to staffing shortages and nearly half had to close programs or reduce operations due to staffing shortages.

Evdos blamed the state funding cuts for impeding such agencies’ missions to provide a good quality of life, full of activities and socialization, for group home residents. The budget cuts — 16.2% in 2020 and 23% in 2021, followed by a decade without cost of living adjustments (COLA) — make it difficult to maintain and incentivize staff, Evdos said.

“The current staffing crisis has also resulted in East End Disability Associates operating its programs at minimum capacity, deploying senior staff to cover direct support professional shifts, postponing planned development and discontinuing some programs that we have provided to families since 1993,” said Lisa Meyer Fertal, the chief executive officer of East End Disability Associates, in a letter sent to family, friends and business associates. East End Disability Associates operates seven group homes across the Twin Forks.

And it does not help that budget cuts, along with the lack of COLA, are not taken into consideration by the state as it continues to implement mandates such as requirements for filling positions or having a certain amount of staff to watch residents of the group homes.
What happens, Evdos added, is that staff members realize they can work a job at Lowe’s Home Improvement or McDonald’s for an easier job that will get them more money. The New York Disability Advocates survey also found a 93.16% decrease in job applications.

Massachusetts - Caregiver Compensation is Too Low to Attract Sufficient Staff
By Larry Thayer, Cape Cod Times via Yahoo News, November 7, 2021

Asad Jung’s recent article (Oct. 27) on apartments in Dennis for people with autism highlighted the critical lack of staffing for adults with disabilities on the Cape.

This is a crisis, and inadequate compensation needs to be addressed now.

Many Cape programs serving adults with autism, traumatic brain injury, cerebral palsy, blindness and other intellectual and developmental disorders lost up to 40% of their direct-care staff during the pandemic. They cannot hire new staff due to low pay rates set by the state. Our programs simply cannot compete with higher salaries offered by employers such as local supermarkets, hotels and restaurants.
The crisis is worse here due to the higher cost of housing, lack of affordable housing, higher food costs and the need to maintain a vehicle due to inadequate public transportation on the Cape.

Each day that people with disabilities lack adequate staffing, their health and safety are at risk.
Employees are required to obtain and maintain certifications in first aid, CPR, medication administration and non-violent restraints, and to exercise independent and compassionate judgment. They are professionals who individuals and their families rely on for their safety, health and well-being. Programs have been unable to operate at full capacity, jeopardizing safety and leaving individuals needing and deserving services without them.

How many parents have been unable to return to work in order to stay home to take care of a family member with a disability? Many Cape Codders have been out of programs for over a year.
Let us urge our legislators and Governor Baker to raise salaries and benefits for the heroic men and women who care for people with disabilities. Paying them a living wage, commensurate with their skills and training, is key. People with disabilities and their families need our support now more than ever.

Year-End Giving for VOR

For those members who have been blessed to reach their seventies, and who will be required to take a distribution from their IRA's by December 31, 2021, please consider using this opportunity to make a contribution to VOR.

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


Including language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services in the Build Back Better Reconciliation Act (H.R. 5376)

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.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. 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 - 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.
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
Toll Free: 877-399-4867 Fax: 877-866-8377
New York - Group Homes in Crisis: East End Homes For People With Disabilities Struggle With Staffing, Funding

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