December 17, 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
VOR & YOU:
VOR's End of Year Fundraising Campaign

Our goal for this year is to make at least $45,000 in donations during the months of November, December, and January. So far, we're halfway there, but there we still have a good way to go.

And please don't think we wouldn't be delighted to exceed our goal. In past years, we have even surpassed $65,000!

We rely on your support, to support families like yours who rely on us to keep them informed, to advocate and to educate, and to be the voice for those who cannot speak for themselves.

Please help us to reach, and to exceed, our goal for this year.
We are happy to announce that we did receive enough donations before Thanksgiving to qualify for the $5,000 match that one of our donors had promised.

As a result of that success, they extended their offer to match an additional $5,000 of donations received or postmarked by Christmas!
What's more, another supporter has announced that she will add match donations up to another $5,000 received by NEW YEAR'S EVE!

This means that we have the opportunity to receive $15,000 of our goal of $45,000 if our members can contribute that amount before the end of 2021!
National News:
After 52 years, Sister Rosemary Connelly has Stepped Down as Head of Misericordia Home
By Stefano Esposito, Chicago Sun-Times, December 9, 2021
She took over at Misericordia Home not long after Neil Armstrong stepped onto the surface of the moon.

Some 52 years later, Sister Rosemary Connelly has stepped down as the North Side charity’s executive director.

“It’s been a wonderful journey, and I’ll continue as long as I can because I feel I do continue to have something to offer,” said Connelly, 90.

Connelly is now chair of the newly created Misericordia Foundation.

Misericordia, a Catholic charity, offers a variety of programs for a total of about 600 children and adults living with a range of developmental disabilities.

“Since 1969, you have served as a steadfast witness to our faith, growing Misercordia’s ministry and mission as a destination for children and adults with disabilities, where they can live active
and rich lives in an embracing, grace-filled community,” Cardinal Blase Cupich wrote in a Nov. 11 letter to Connelly. “Through this ministry, you have celebrated and lifted up the dignity and beauty of each life. In the process, you have modeled not only acceptance and a commitment to educate and nourish each of God’s children, but a true love for all and the joy found in service.”

The Rev. Jack Clair, who has held various roles since arriving at Misercordia Home in 2000, is now the facility’s president and executive director. The most immediate challenge is trying to hire more staff, Clair said. Misericordia is down about 80 people since the start of the pandemic, he said.

The organizational changes come as Misercordia gets set to celebrate its 100th anniversary.
Fifth Circuit Affirms Stay of CMS Vaccine Mandate For 14 States, Overrules Nationwide Stay

By Mark Garriga and Brent Siler, JD Supra, December 16, 2021

On December 15, 2021, a panel of the Fifth Circuit Court of Appeals partially affirmed an injunction entered by the U.S. District Court for the Western District of Louisiana on November 30, enjoining the Centers for Medicare and Medicaid Services (CMS) from enforcing its Interim Final Rule (IFC) mandating that most Medicare and Medicaid-certified providers and suppliers take steps to ensure that all staff at the included healthcare facilities are vaccinated for COVID-19 (see the list of covered healthcare facilities, below). The fourteen states affected by the ruling are: Louisiana, Montana, Arizona, Alabama, Georgia, Idaho, Indiana, Mississippi, Oklahoma, South Carolina, Utah, West Virginia, Kentucky, and Ohio. The Circuit Court’s ruling, however, vacates the District Court’s nationwide injunction.

The net effect of the Fifth Circuit order is that CMS, at least for now, is prohibited from enforcing the IFC vaccine mandate in the fourteen states that brought the Louisiana suit, while allowing the agency to proceed with enforcement in the rest of the country. The Court noted, however, that other courts have reached differing conclusions on the vaccine mandate in other pending cases, a hint that the ultimate decision on “an issue of great significance” will eventually be in the hands of the U.S. Supreme Court.

Healthcare facilities covered by the IFC and affected by the mandate include Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) and other Long Term Care (LTC) Facilities, including Skilled Nursing Facilities (SNFs) and Nursing Facilities (NFs) (generally referred to as nursing homes).
Follow up on last week's news:
Push To Add ‘Profound Autism’ Label Gains Steam
By Blythe Bernhard, Disability Scoop, December 17, 2021
Support for recognizing profound autism as a separate psychiatric diagnosis has gained momentum recently with several high-profile endorsements.

Since a 2013 change to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, or DSM, autism spectrum disorder has been an umbrella diagnosis encompassing everyone from mildly affected individuals who used to be diagnosed with Asperger’s syndrome to those who are nonverbal and require 24-hour care.

That’s far too broad, said Amy Lutz, vice president of the National Council on Severe Autism.

“It’s not useful to think of everybody having the same disorder, including a range of presentations from people who are law school graduates to those who are still in diapers and nonverbal,” Lutz said. “It’s not helpful for research or therapeutics. It’s become a meaningless category.”


The council adopted a position statement in October asking the American Psychiatric Association to revise the DSM to include a “distinct, stand-alone diagnostic category” for severe autism.
“The umbrella ASD diagnosis has marginalized a growing population of individuals whose neurobehavioral pathologies are among the most alarming and disabling in the entire field of psychiatry,” reads the statement.

Identifying autism as a spectrum that includes a growing number of people with no intellectual disability has led to potentially unintended consequences in research, government and culture, said Alison Singer, co-founder and president of the Autism Science Foundation.

“Whether you had an IQ of 50 or 150 you were diagnosed the same,” Singer said. “This turned out to be a huge problem. A group of very high-functioning people were called upon to represent autism at policy tables and in the media.”

The emergence of high-achieving characters with autism on television shows like “The Good Doctor” meant “this is the only type of autism the public sees,” Singer said.
Margaret Giannini, Champion of People With Disabilities, Dies at 100
After meeting the parents of children with a range of disabilities, she decided almost on the spot to start a clinic to treat such children exclusively.
By Katharine Q. Seelye, The New York Times
December 11, 2021
Dr. Margaret Giannini, a pioneer in treating developmental and physical disabilities, died on Nov. 22 at her home in San Diego. She was 100.

Dr. Giannini, an internationally recognized expert in the care of people with disabilities, was the catalyst behind what is now the Westchester Institute for Human Development in Valhalla, N.Y., north of New York City, one of the world’s largest facilities for people with developmental disabilities.

A pediatric oncologist at New York Medical College, she was summoned one day in 1950 to the office of the chairman of her department, Dr. Lawrence B. Slobody. He introduced her to several parents whose children had a range of disabilities; they had not been able to find a doctor in New York City willing to provide them with general medical care.

Recognizing the obvious need, Dr. Giannini decided almost on the spot to start a clinic that would focus exclusively on such children. That year, she founded the Mental Retardation Institute in East Harlem, which she said was the first of its kind in the country. She worked out of a basement because others in the building did not want children with visible problems coming through the lobby.
“If ever a vital need and the right one to fill it were well met,” The Daily News wrote in 1970, “it’s in the person of Dr. Margaret Giannini and the field of mental retardation,” the commonly accepted term of that era.

By 1971, she had raised more than $7.5 million to establish a new building in Valhalla. The institute provided diagnosis, evaluation and therapy. It also trained professionals and students in psychology, social work, speech, audiology, nutrition and rehabilitation.

Dr. Giannini was dedicated to helping people with disabilities “before it became respectable,” she told The Daily News.

“There was a feeling of hopelessness about it,” she said. “I think the feeling of many physicians was, ‘What do you want to bother with that for? You can’t do anything anyway — it’s just time-consuming and draining.’”
What are the Experiences of Clinical Psychologists Working with People with Intellectual Disabilities During the COVID-19 Pandemic?
By Nataliya Chemerynska, Magda Marczak, and Jo Kucharska, Wiley Online Library, December 16, 2021

People with intellectual disabilities are a particularly vulnerable group, at an increased risk of mortality from COVID-19 and of poor mental health. Psychologists providing mental health support to people with intellectual disabilities report poorer mental wellbeing and higher occupational stress. Moreover, they raise concerns about the ability of people with intellectual disabilities to engage with digital technologies for mental health support in the context of reduced face-to-face psychological provision.

The study aimed to understand psychologists’ experiences of working with people with intellectual disabilities during the pandemic.

The current study demonstrates psychologists' ability to adapt to extremely challenging circumstances, exposes the vulnerabilities of people with intellectual disabilities and highlights the gaps in service provision.

The stresses and uncertainties of working during the pandemic took a significant emotional toll on psychologists' wellbeing: ‘I feel like a speck in the base of a tsunami’.

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

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  3. Type into the search box: VOR - Elk Grove Village and click on the Select button.
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Thank you for supporting VOR!
State News:
For Kids in Crisis in Illinois, There is Nowhere to Turn for Help
Experts say there are no residential facilities available for students requiring intensive mental health or behavioral support as needs surge.
By Sarah Karp and Susie An, WBEZ News,
December 13, 2021
Peter Jaswilko’s son Kyle has autism and long-standing issues with aggression. But starting last year, in the dark days of the pandemic when everything was shut down, the situation turned into “complete chaos,” Jaswilko said.

Kyle, who is 15 and over 6 feet tall, started attacking his father, causing hearing loss and several concussions. At one point, both father and son were admitted to the hospital — Kyle for psychiatric care, Peter with blood dripping from his head. Kyle has punched so many holes in the walls of their home in suburban Lake in the Hills home, Jaswilko said there’s barely any drywall left.

Everyone — from his parents to school district officials to the police who have frequented the home — agree Kyle needs to go to a place that can help him and keep his family safe.

But there’s nowhere for him to go. Kyle is one of many Illinois teens with developmental disabilities, behavior or mental health issues being turned away from residential treatment facilities, experts and state lawmakers say. Finding a spot in these facilities, which is what many of these teens need to be stabilized and attend school, can be difficult
under normal circumstances but the pandemic has both exacerbated the needs and created crisis-level shortages.

Residential facilities report that they have been hit hard by staff shortages, making them unable to run safely at full capacity. This comes as experts in IIllinois say they are seeing a spike during the pandemic in the number of children threatening self-harm and harm of others. Some, like Kyle, have developmental disabilities and their behavior is more than their families can safely address at home.

The state didn’t supply numbers of families waiting to getting into treatment facilities, but parents, school district officials and experts say there isn’t a single residential facility available that will admit children with the most extreme needs. With many pediatric psychiatric units also full, some children are waiting in hospital emergency rooms for weeks at a time. Others are languishing in juvenile detention centers.

Some are at home with terrified, desperate parents.
Pennsylvania - Hutchinson Joins Renewed Effort to Halt Closure of Polk State Center with Senate Passage of Moratorium
By Aly Delp, Explore Clarion, December 16, 2021

The struggle to halt the closure of the Polk State Center continued on Wednesday with Senate passage of legislation co-sponsored by Sen. Scott Hutchinson (R-21) which would keep it open for a minimum of five years.The approved bill, Senate Bill 924, would also create a Task Force on the Closure of State Facilities. This task force would perform a “comprehensive evaluation” of the remaining state centers and provide recommendations prior to the closure of any of the state centers.

Under this legislation, no state center would close until the task force completed their comprehensive evaluation and provided their recommendations to the department, the state center is deemed eligible for closure, and the plan is approved through a majority vote of the task force.

The legislation would also stop the closure of any state center until at least five years have elapsed.
If a state center is deemed eligible for closure through a majority vote taken by the task force, the department will be required to prepare a plan for the closure of the state center and the transition of individuals receiving care in the state center to a home or community-based support system. Once the plan is approved by the task force, the department would be required to make the plan available to the public, as well.

“Since the announcement of this closure, we have had a worldwide pandemic. What that has meant is there has been zero to little thought about where these residents will go,” Hutchinson said. “We have families deathly afraid about the future living arrangements for their very fragile family members.”
Similar legislation was introduced in the previous legislative session and while it was approved by the General Assembly, it was later vetoed by Gov. Tom Wolf.
Pennsylvania - Opinion: Wolf, Lawmakers Fail to Address Collapse of Pa. Disability System
By a coalition of 17 intellectual disability and autism service providers,
Erie Times-News, December 16, 2021

At a time when Pennsylvania has billions of dollars in federal money plus state treasury receipts dramatically outperforming projections, the Wolf administration is failing to fully address the collapse of the community system that provides critical services for people with intellectual disability and autism. The administration’s actions may have tragic consequences for people with disabilities.

Congress and the president have asked governors to rescue disability programs by increasing funding for the community system’s direct support professionals. DSPs provide lifesaving, caring supports for persons with disabilities, and this goal was a key element of the passage of the American Rescue Plan. It is also a vital provision of the pending Build Back Better legislation. Our commonwealth has received money to achieve this goal, but doing so requires leadership by our governor to use both the federal dollars and Pennsylvania ’s increasing revenues for this purpose.

Instead of responding to the crisis, the Wolf administration has presented a plan that fails on several fronts. It:
• Fails to strengthen community services as required by federal law.
• Fails to fund a wage that will hire enough skilled workers to operate community services.
• Fails to offer a pathway to reduce an up to 60% turnover in community program staffing.
• Fails to provide rates for sufficient staffing for programs serving people with medically and behaviorally complex issues.
• Fails to restore service to 6,500 people who have lost supports in the last 18 months.
• Fails to provide equal pay for equal work — 30% less than state workers.
• Fails to support the 5,000 people in crisis at this moment.
Arkansas - Hutchinson Offers Plan to Eliminate Waiting List for Home, Community Services for Developmentally Disabled
By Michael R. Wickline, Arkansas Democrat-Gazette, December 15, 2021
Gov. Asa Hutchinson on Tuesday unveiled his plan to provide services by June 2025 to the 3,204 people on the state's waiting list for people with intellectual and developmental disabilities who want to stay in their homes and communities.

Of those on the waiting list for services as of Dec. 1, 1,861 of them had income low enough to qualify for some form of services through the state's traditional Medicaid program and the remainder are receiving no services at all, the Republican governor said at his weekly news conference in the governor's conference room at the state Capitol.

"Today, I am announcing a plan to provide services to everyone, everyone, that is currently on the waiting list," said Hutchinson, who has been governor since 2015 and whose term as governor ends in January 2023.

The state is submitting a waiver request to the federal government to have 200 more slots for people to receive services that will be funded with existing revenue, he said.
In addition, Hutchinson said he also will ask the General Assembly to add special language to devote $37.6 million of his proposed $60 million increase in the Medicaid general revenue budget in fiscal 2023 to "create more slots, so that everyone who is currently on the list will be served by June of 2025."

Hutchinson said he expects lawmakers will support his proposal during the fiscal session that starts Feb. 14.

"Once approved in terms of that funding, then [the state Department of Human Services] will submit a request to amend the current waiver to progressively add enough slots over the next three years to serve everyone who is currently on the waiting list as of today," he said. "It gives them hope and it gives a specific plan as to how to address this great need that we have to meet the needs of our most vulnerable citizens."
Connecticut - Health Care Workers’ Union Reaches Deal to End Strike Against Nonprofit
By Keith M. Phaneuf, CT Mirror, December 9, 2021
Connecticut’s largest health care workers’ union reached a tentative agreement this week, ending its two-month-long strike against a major provider of residential and other services for the developmentally disabled.

More than 180 members of SEIU District 1199 New England must now vote on the tentative deal with Sunrise Northeast Inc., which operates 28 group home and day services programs spread across 17 communities in eastern and central Connecticut. They serve more than 160 disabled clients.

Union officials did not release full details of the tentative agreement struck late Tuesday but confirmed in a written statement that the package is retroactive to July 1 and runs through March of 2023.

“We see this agreement as an enormous step forward in the fight for economic and racial justice,” said Stephanie Deceus, a vice president with District 1199, who said no further details would be provided until the deal was ratified.

The union statement also quoted Charmayne Brown, a caregiver with 14 years of service at Sunrise, who said that:
“With this contract, we have achieved historic wage increases, real affordable health care and a retirement with dignity. My coworkers and I look forward to getting back to our clients whom we love and miss.”

Dawn Frey, executive director for Sunrise Northeast, could not be reached for comment Thursday.

The work stoppage against Sunrise was just the latest move in a long-running struggle involving low-paid health care workers, a financially strapped nonprofit social services industry, and the state — which relies on the private sector to deliver the bulk of its human services programs.

Most of these nonprofits, the union asserts, have long provided their workers — most of whom are minority women — with little more than minimum wage salaries, expensive yet low-quality health insurance, and meager retirement benefits, if any.
Wisconsin - A Sheboygan Group Home Closed Due to a Staffing Shortage. Families of the Residents had about 30 Days to Find New Housing for Loved Ones.
By Jelissa Burns, Sheboygan Press, December 13, 2021

Diane Daane was told at the beginning of November that she had fewer than 38 days to find a new place for her 33-year-old son to live because his adult family home would be closing as a result of a staffing shortage.

The Plymouth resident, 66, went from being fully retired and living at home alone to becoming a full-time, in-home caretaker for her son, Christopher, in just less than a month.

Families were notified that the official closing date for the facility was Dec. 1.
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]

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.
Direct Support Professionals:
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.

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]
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