July 22, 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
President's Council for People with Intellectual Disabilities
will be holding its first virtual meeting of the new term on July 28, 2022 from noon to 4 pm (Eastern).

For more information about the PCPID, please click here.
To register for this meeting, please click here.

This is a great opportunity to let the decision makers know that
we are watching!
National News:
CMS Announces Unprecedented Quality Measure Set for Home- and Community-Based Services
By Andrew Donlan, Home Health Care News, July 21, 2022

The Centers for Medicare & Medicaid Services (CMS) released its first ever home- and community-based services (HCBS) quality measures Thursday.

The agency said the measures will promote “consistent quality measurement within and across state Medicaid HCBS programs” and are a “critical step to promoting health equity among the millions of older adults and people with disabilities who need LTSS.”

The measures are built around three pillars: access, a rebalancing of HCBS spend versus institutional care spend and community integration. For now, the measures are voluntary – with one caveat. 

“While use of this measure set is voluntary at this time, CMS plans to incorporate use of the measure set into the reporting requirements for specific authorities and programs, including the Money Follows the Person (MFP) program and future section 1115 demonstrations that include HCBS,” a state Medicaid director letter read.
The MFP program is a CMS-directed way to get individuals out of institutional-based care and back into their homes and communities to receive HCBS. As recently as March, CMS put forward $110 million to boost MFP, and therefore HCBS services, across the country.
In other words, following the measure set is strongly encouraged for states.

“CMS is using every lever available to protect and expand coverage for all people eligible for Medicaid,” CMS Administrator Chiquita Brooks-LaSure said in a statement. “We are working to expand their access to care across settings – including in the setting of their choice.”

Related Article:
Provider Groups Decry ‘Chronic Underfunding’ as CMS Introduces HCBS Quality Measures
By Lois A. Bowers, McKnight's, July 22, 2022

The federal government’s introduction Thursday of quality measures for the home- and community-based services offered by assisted living and other providers comes amid “longstanding, chronic underfunding” of HCBS that has led to provider workforce shortages, senior living industry advocates told McKnight’s Senior Living Thursday.

The financial issue must be addressed, the groups said, noting, however, that they support the quality improvement effort in general.

Meredith Chillemi, director of Medicaid and home- and community-based services policy at LeadingAge, told McKnight’s Senior Living that CMS’ release of the nationally standardized quality measures is a step toward ensuring that beneficiaries have information to “fully participate in creating a service plan that meets their needs and goals.”

“But knowing their options does not guarantee consumers’ ability to access needed services,” she added. “Longstanding, chronic underfunding of HCBS in our country, and the resulting workforce shortages — exacerbated by the pandemic — mean millions of older adults and families’ requests for care are going unfilled.”

Members of Congress and policymakers must take action, Chillemi said. “More support, such as a permanent HCBS Federal Medical Assistance Percentage (FMAP) bump*** and investments in workforce training and development to recruit and keep more workers in the sector, is critical,” she said. “Because without staff, there is no care.”

Argentum told McKnight’s Senior Living that although it backs governmental efforts to improve the quality of care delivered to assisted living residents receiving long-term services and supports through Medicaid HCBS programs, the release of the measure set “comes at a time when the majority of states provide inadequate reimbursement for HCBS programs utilized in assisted living.”

“Inadequate provider reimbursement cannot be separated from the broader issue of improvements in care quality,” the group’s statement continued.

*** VOR supports a permanent FMAP bump for all CMS services, not only HCBS. Funding increases should apply to all individuals who receive Long-term services and supports through CMS, regardless of their choice of settings.
State News:
New York - Broken Homes: How Troubled Residences for Disabled New Yorkers Operate for Years
By Jacqueline Neber, NY City News Service, July 20, 2022

At Crystal Run Village Inc., a group home for disabled adults in New York’s Hudson Valley, two residents died within a year from the same reason: They choked trying to eat a meal.

The residents, who died in 2018 and 2019 at Crystal Run’s four-bedroom home in the hamlet of Campbell Hall, were supposed to be supervised by staff during mealtime to prevent mishaps. State records show that did not happen. 

The New York Office for People With Developmental Disabilities, the state agency in charge of overseeing group homes, deemed the deaths preventable, citing them as just two of the instances involving poor supervision at facilities operated by Crystal Run, a nonprofit chain of 46 homes in the Hudson Valley and the Catskills.

A month after the second death, the state issued its most serious public warning about poor conditions—an Early Alert letter. It disclosed more troubling events, including “serious incidents involving lapses in nursing oversight.” In all, the state found at least 16 serious mealtime choking incidents. A resident at a different Crystal Run home also died from choking during a meal. The state determined Crystal Run did not have enough workers to help prevent injuries—despite state requirements designed to prevent these kinds of incidents.

The 2019 Early Alert letter was lifted this month, not because Crystal Run fixed the troubled operation—but because the homes were acquired by a different nonprofit, the Adapt Community Network.

A review by the NYCity News Service found that 13 of the state’s most-troubled private and public providers—operating from Brooklyn to the Catskills and from Rochester to Syracuse—have been allowed to continue running dozens of homes and programs despite serious unresolved issues. 

The deficiencies include dangerously dilapidated housing, failure to report serious incidents involving patients, poor nursing oversight, accusations of chronic financial mismanagement and failure to take measures to prevent avoidable deaths.

In recent months, the state agency has issued more additional Early Alert letters, raising concerns about the financial stability of two private operators. 

In 2020, the state reported more than 2,600 complaints were filed and closed against privately run facilities. State investigators found more than a third were “substantiated” by evidence. 

Close to a decade ago, after a series of scandals and tragedies chronicled by The New York Times, New York reformed the network of state and privately owned group homes where almost 40,000 disabled residents are living. The residences are intended to be settings in which residents can get the support they need while trying to become more independent. Group home residents have disabilities including autism, cerebral palsy, Down syndrome and other neurological disabilities.  

The group homes currently on the Early Alert list have not resolved their problems for an average of almost three years. The longest unresolved case is almost seven years old.

A 2021 audit by the U.S. Department of Health and Human Services inspector general found critical gaps in oversight at group homes in New York. Serious incidents were not reported properly, putting disabled residents at a great risk of harm and preventing thorough investigations. 

“New York did not ensure that [group homes] fully complied” with federal rules for serious incidents, the inspector general wrote. The state, which did not dispute the findings, said it is working to improve incident reporting.

“The HHS audit found that in a very small number of incidents, providers did not immediately report an incident; that a very small number of providers did not complete their investigation of incidents within the timelines defined by the regulations; and that two providers did not identify trends in their incident reporting,” the state said. “OPWDD enhanced its training and guidance to providers on incident management and reporting.”

Separately, the News Service also found dozens of lawsuits alleging neglect and abuse within the network of the state’s roughly 300 group home operators—including accusations that residents died needlessly, were injured, abused, and sexually and physically assaulted. The News Service analysis checked each of the state’s licensed residential home operators, as of 2021, against state court records. At Crystal Run, earlier instances had already raised questions about safety that predated the 2019 Early Alert letter.

Oklahoma - DHS Unveils Plan to End 13-Year Waitlist for Developmental Disabilities Services
The agency plans to offer services to families on the list over the next two years
By Kilee Thomas, KOCO News-5, July 21, 2022
Help is finally on the way for more than 5,100 “special needs families” who have been waiting more than a decade for state assistance.

On Thursday, the Oklahoma Department of Human Services laid out a timeline for families to receive the long-awaited call.

Families who have been waiting for almost 13 years will finally get the help they’ve been asking for.

“A lot of people have been on this waitlist forever,” said Monique Pendleton, whose son, Josiah, is waiting for services.

Said family advocate Wandy Felty: “I remember being on the list thinking nobody cares. This is a game-changer.”
“That’s actually what the waiver waiting list is,” Felty said. “Thank you for the application. I’m going to put it right here. And we’ll call you when you get to the top of the list in about 13 years.”

But today, the Oklahoma Department of Human Services said the long wait is almost over. In just two years, the agency’s Developmental Disability Services will help each of the 5,100 families on the list, starting with those who have been on it the longest.

“Right now, we are contacting 340 families on the waiting lists that had applied through January of 2011, between the months of June and September, and then we’ll move on to the next waiting lists group,” said Beth Scrutchins, division director for developmental disability services at DHS.

Southwest Oklahoma’s First and Only Intermediate Care Facility for Adults with an Intellectual Disability is Officially Open
By Diamond Hubbard, ABC-7 News, July 16, 2022
Sue Wigington - a retired teacher, had this vision for a decade, and today her family made her dream come to life. Wigington daughter’s started working on opening the facility two years and ran into a lot of obstacles, but she said today it made it all worth it.

This facility is for individuals with intellectual disabilities. The goal for residents is to reach optimal levels of physical, intellectual, social, and vocational function.

Matthew Scott is one of the residents. His parents said they’ve been looking for a facility for their son that is closer to them and gives top-notch care.
“He’s becoming more independent since being here away from us his parents. He’s also exercising more and expressing more love for friendships and developing those. And we’re are so excited that he is here and he loves it and we do also,” said Melody Scott.
Mathew’s parents said he is not a hugger and he gave the staff their first hug yesterday.

Heather Clements, Sue Wigington’s daughter, is the administrator and co-founder of Parker place. She said her mother saw there was a need for a facility like this in Southwest Oklahoma and in 2019 Clements started training to become a long-term care administrator.

“I just wish my mom could be here, she passed about a year ago and she would just be thrilled to see this come to fruition, and so I know she’s here with us in spirit and we wanted to dedicate this first home to her,” said Clements.

Connecticut - Report Finds Deep Vacancies at Social Services Agencies
By Hugh McQuaid, CT News Junkie, July 18, 2022

A report detailing state workforce staffing levels at the beginning of July found deep vacancies in social safety net agencies like the Department of Developmental Services, where more than one-third of positions were vacant. 

Connecticut’s state government weathered a surge of retirements ahead of July 1, when a previously negotiated change in retiree cost of living benefits incentivized retirement for those who were eligible. 

In late June, Gov. Ned Lamont and members of his administration held a press conference to report that despite some “hot spots,” the so-called “silver tsunami” had been less severe than anticipated. 

However, a recent state workforce report found that of 6,945 state vacancies, 1,512 were at the Developmental Services Department. The agency, which is tasked with caring for people with intellectual disabilities, had 2,543 employees as of June 30.

A spokesperson for DDS referred questions regarding this story to the Department of Administrative Services. In an email, Lora Rae Anderson, a spokesperson for DAS and the governor’s office, said that DDS staffing levels remain in flux as recruitment efforts proceed.

“Recruitment to refill direct care and clinical positions has been challenging, as it has been across the nation,” Anderson said. “These two factors combined have led to vacancies. However, it’s critical to note that the agency has not reduced service delivery as a result. State agencies continue to work in partnership to devise and deliver new recruitment strategies to fill these vacant positions.”

Autism Science Foundation Launches First-of-Its-Kind 'Profound Autism' Funding Mechanism
News provided by Autism Science Foundation, Cision PR Newswire, July 18, 2022,

The Autism Science Foundation (ASF), a nonprofit organization dedicated to funding innovative autism research and supporting families facing autism, today announced a new, focused funding mechanism to support research on individuals with "profound autism" and those with severe and challenging behaviors including impulsivity and aggression. ASF's new funding mechanism is intended to support projects that will improve, expand, or make possible the inclusion of those with "profound autism" into research studies to ensure that scientific discoveries help individuals across the spectrum.

In December 2021, The Lancet Commission on the Future of Care and Clinical Research in Autism – a group of autism researchers, advocates, and experts including ASF President Alison Singer – called for the use of the term "profound autism" for the first time in a peer-reviewed journal to distinguish individuals who have high dependency needs and have historically been underrepresented in research.

Per The Lancet, the term "profound autism" applies to autistic people who are at least 8 years old, minimally verbal or nonverbal, have an IQ below 50, are not able to advocate for themselves, and will likely require 24-hour access to an adult who can care for them for the rest of their lives.

"As both a longtime autism advocate and mother of a 25-year-old daughter with profound autism, I am intimately aware of how people on the severe end of the autism spectrum have been significantly underrepresented in research for decades," said ASF Co-Founder and President Alison Singer. "I am incredibly proud that ASF will debut this new funding mechanism, which will be an important step toward addressing the disparity in who benefits from research."

"The Lancet Commission on the Future of Care and Clinical Research in Autism proposed the concept of 'profound autism' and called for targeted research into this understudied population because of concerns that sometimes, within the complex heterogeneity of autism, the immediate practical needs of those children and adults with autism and significant intellectual and language limitations are not sufficiently recognized and addressed," said Lancet Commission Co-Chair Dr. Catherine Lord, a professor at UCLA's Center for Autism Research & Treatment and a member of ASF's Scientific Advisory Board. "The Autism Science Foundation has stepped up to address this challenge through this new funding mechanism."

Families of Individuals with
Severe/Profound I/DD and Autism
Need a Voice in Washington, D.C.

For Four Decades, VOR Has Been That Voice

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

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

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

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

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

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.
VOR Bill Watch:
[Please click on blue link to view information about the bill]


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

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

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

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


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

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

H.R. 2383 & S. 3238 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

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

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