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.
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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities |
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Time Is Running Out!
VOR's End Of Year Fundraising Campaign
At this writing, we have still not reached our year-end goal.
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We rely on the support of families like yours, so that we may support other families, just like yours, with loved ones with intellectual and developmental disabilities.
Please help to us to give a voice to
those who cannot speak for themselves.
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We almost missed this article from last week, featuring VOR Board member Rita Winkeler discussing the effects of the Covid pandemic on this year's holiday season at the Murray Center: |
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Illinois - Residents in Congregate Care Facilities Face Yet Another Uncertain Holiday Season
By Stephanie Whiteside, PBS (WFYI), December 23, 2021
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The Murray Developmental Center in Centralia, Illinois, is home to around 250 residents, many of whom are medically fragile. During the pandemic, these residents and their families have been separated by lockdowns, which have continued long after the rest of the country has been opening up.
Rita Winkeler, who runs the Murray Parents Association, said the pandemic was devastating for her family — and for many others with loved ones at the facility.
“One day they [told] us you can no longer come in, and the next time we got to see our loved ones was four months later,” Winkeler said.
On another occasion, Winkeler’s family had plans to visit her son the following day. But the night before, a staff member tested positive for COVID-19.
“So then we had another two weeks to wait,” she said.
Families with loved ones in facilities for the developmentally disabled are especially eager to spend the holidays together this year. But as the pandemic continues, they face new uncertainty and continuing lockdowns even as the rest of the country tries to get back to normal.
Margaret Nygren, who heads the American Association on Intellectual and Developmental Disabilities, said the impact of COVID-related closures is greater for people in congregate care facilities because they are already somewhat isolated from the rest of the world.
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"Taking away even small amounts of access to the larger world can be devastating,” Nygren said.
Murray residents and their families faced the same pandemic challenges as everyone else — uncertainty, isolation and worry. But family members of people with intellectual and developmental disabilities face additional challenges, trying to help their loved ones understand what’s going on and why they’re not able to visit.
Some of Murray’s residents understood what was going on, like Ineke, whose guardians requested her last name not be used. Ineke said she’s proud of the way she has stayed strong.
“This pandemic, I've been a trooper right through it,” Ineke said.
To help her pass time when the facility was on lockdown, Ineke said she turned to arts and craft
Other residents, like Winkeler’s son Mark, don’t have the capacity to understand why they are suddenly unable to see their families.
“How do you explain to someone, like our son, who functions like a nine month old?” Winkeler said. “All of a sudden his [parents are] not coming anymore. It was just really horrible.”
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We would like to thank VOR's Deborah Napolitano, who worked with our New York State Coordinator to help bring part of the following bill into law. Together, we helped increase funding and access for Applied Behavioral Analysis (ABA Therapy) for individuals with intellectual disabilities in New York State. |
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New York - Governor Hochul Announces Historic $240 Million Increase in Investment for Schools Serving Children With Disabilities
Press Release from NY State Governor's Office, December 30, 2021
Governor Kathy Hochul today announced plans to include a historic $240 million increase in investment for approved private schools serving children with disabilities in her upcoming 2022-2023 Executive Budget. Governor Hochul also signed a package of legislation to increase resources and support for students with disabilities, their families and social services providers.
Governor Hochul also signed a package of legislation to support students with disabilities: legislation (S.2911/A.1953) establishes that the Autism Spectrum Disorders Advisory Board provide a report on autism detection, education, and mapping; legislation (S.6682/A.7614) appoints an impartial hearing officer to address due process complaints for students with disabilities; legislation (S.1662-B/A.3523-A) makes the issuing of behavior analyst licenses in New York consistent with other states; and legislation (S.5560-A/A.5339) provides funding to early intervention education for toddlers with disabilities.
Senator James Skoufis said, "While every other state permits its applied behavior analysts to broadly practice their skills, New York has long pigeonholed these professionals, keeping children and individuals with disabilities from benefiting from this impactful therapy. For those struggling in the face of various mental health or developmental diagnoses, this legislation is a game-changer. I am grateful to the many ABAs, families, and colleagues who worked tirelessly to get this bill across the finish line, including Majority Leader Stewart-Cousins, Majority Leader Peoples-Stokes, and Senator Mannion. Finally, we owe a debt of gratitude to Governor Hochul for supporting this important legislation and her commitment to children with disabilities."
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Missouri - Longtime Disability Services Leader Retiring
By Dale Garrison, Courier Tribune, December 27, 2021
CEO Randy Hylton is leaving after 46 years with a Kansas City-area nonprofit that provides employment and other opportunities for people with developmental disabilities.
A graduate of William Jewell College, Hylton’s career in many ways mirrors the history of employment for people with disabilities.
His story began in early 1975 at VSI’s first location in North Kansas City, one of Missouri’s early workshops first launched in a former hair salon. Later that year, Hylton was on hand for building Liberty’s first workshop, the first of two Liberty locations that, along with North Kansas City, would eventually serve more than 200 people with disabilities.
Named VSI’s executive director in 1993, Hylton initiated a number of changes. He led VSI to its first national accreditation by CARF and helped bolster a parent organization, giving formal voice to a group that had been behind workshop creation in VSI’s area and throughout Missouri.
“There’s always been a lot of people involved in workshops that weren’t always obvious,” he noted. “It’s important they have a way to be involved.”
A major change involved opportunities for people with disabilities outside of workshops via “supported” or community employment with private companies. The jobs were especially good for employees with moderate disabilities who benefited from the support of a job coach and the workshop “parachute.” If the community job didn’t work out, they could return until they wanted to try again. VSI became the first workshop in Missouri to launch a supported employment program.
“I thought, there is no reason we can’t offer both workshop and community employment,” Hylton said. “I’m proud to have provided that service. It made a difference to the people we serve.”
Another change involved those challenged to meet state guidelines for workshop employment. Hylton devised a plan where these workers could receive extra training in work and social skills.
Despite all of this, not everyone appreciated workshops, and some actively campaigned to close them. That was one reason Hylton became active in the Missouri Association of Sheltered Workshop Managers, eventually serving as the group’s vice president, president and legislative chair.
“There were a lot of things happening,” he recalled. “There was a lot of pressure to do away with workshops.”
While new challenges have arisen, positive steps were, and continue to be, achieved. Workshops, once an often-overlooked resource, are better known. Along the way, Hylton has testified before the Missouri Senate, worked with state and national advocacy groups and even faced grilling on television as he made points that aren’t always popular.
“Those who question the value of workshops don’t realize how many people are involved,” he explained, citing grassroots support from parents, including many who helped found workshops.
Others who are overlooked can be surprising. “Most of all, there are the people with disabilities,” Hylton said. “We must ask, ‘What do they want?’ I think a lot of people forget that question. They don’t realize how much the employees enjoy their time at work with their friends, working with their peers and the other benefits of the workshop environment.”
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[Please click on blue link to view information about the bill]
VOR SUPPORTS:
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.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.
VOR OPPOSES:
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.
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Direct Support Professionals: |
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VOR ❤️s OUR 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.
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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?
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