May 13, 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
VOR & YOU:


Sunday, May 15, 2022
3 - 5 pm EDT / 2 - 4 pm CDT / 1 - 3 pm MDT / Noon - 2 pm PDT
(Nofe: Times have changed from previous announcement)

Virtual Meetings with Congressional Offices
Week of May 16 - 20
We will help our participants to arrange their own Zoom meetings with
Congressional Staffers

Debriefing & Feedback Sessions on May 16 & 17,
6:30 - 8 pm EDT

This is a great opportunity to introduce your family to Members of Congress!


Registration is free. Donations are welcome.
You must be a current member of VOR to participate in the Initiative.



VOR's Annual Membership Meeting

Celebrate VOR's 39th Year of Family Advocacy

Sunday, June 12, 2022
On Zoom

Guest Speakers:
  • Jill Escher - President, National Council on Severe Autism; Escher Fund for Autism, Past President of the Autism Society San Francisco Bay Area
  • Kit Brewer - Executive Director, Project CU - St. Louis, MO; Director, Coalition for the Preservation of Employment Choice (formerly the Coalition for the Preservation of 14c)
  • Micki Edelsohn - Founder, Homes For Life; Author, “Mom with a Megaphone”

Reports from the States!
Family Networking Meeting!
Our World Renowned Cakeless Bake Sale!

As in previous years, the Annual Meeting will feature an open presentation from the
VOR Board of Directors and we will reveal the results of the current Board elections.

Registration is Open!
State News:
Minnesota - As Group Homes Struggle to Find Workers, Families Forced to Provide Complex Care for Loved Ones with Disabilities
By Kirsten Swanson, KSTP-5 News, May 11, 2022
For the last six months, Nick Skluzacek’s regimented life has been anything but routine.

The 29-year-old has Dravet Syndrome, a rare genetic disorder that causes a severe form of epilepsy. He lives in a group home in Afton, where caregivers and nurses work around the clock to tube feed him, give him dozens of medications and monitor his frequent and intense seizures.

However, over the past few months, that intense level of care has largely been provided by Nick’s parents at their home in Wisconsin, not by the health care personnel at the group home.

“There just aren’t staff available to do it,” said Joan Skluzacek, Nick’s mother.

A severe worker shortage in the care professions in Minnesota has upended critical care for people with disabilities. Provider organizations, unable to financially incentivize workers to the field, are struggling to fully staff group homes across the state.
Several months ago, the crisis hit a breaking point when dozens of group homes across the state closed, leaving people with disabilities scrambling to find alternative care and a new place to live.

While state officials say their data shows the closures have decreased to more normal levels, 5 INVESTIGATES found even facilities that managed to stay open continue to face dire staffing shortages, leaving families like the Skluzacek’s to fill in the gaps.

“We’re at a crisis,” said Paul Skluzacek, Nick’s dad. “It’s not just us. We know that it’s across the board.”
Indiana - Without Millions in Cash, South Bend Group Home Could Close
By Jordan Smith, South Bend Tribune, May 10, 2022
The board that oversees and ensures the future of Portage Manor, a historic and stately residential health care center in northwest South Bend, is signaling the facility could shut down without a $25 million to $32 million long-term investment from St. Joseph County.

Failing to get the money, board members say, would mean Portage Manor needs to determine where its 116 tenants — most of whom are adults with disabilities — will live.

“Frankly, half of the people at Portage Manor, I would guess, would be homeless without Portage Manor,” said Mike Misch, who's now the county attorney but previously served as vice president of the board of managers, last fall.

Because the Manor has lost $2 million in cash reserves since December 2012, its Board of Managers says it needs the St. Joseph County Council to agree later this month to invest millions in a new facility.

The hope is the facility would become financially self-sustaining because it could house more residents and garner Medicaid funding, which entails at least $21 more per person a day than the state Residential Care Assistance Program. The current building, finished in 1907, would need to meet requirements of the American with Disabilities Act and has been deemed too costly to bring into compliance.
Portage Manor, which sits on 114 verdant acres off of Portage Avenue to the west of the St. Joseph River, is one of at most 10 county homes still operating in Indiana. Each of Indiana's 92 counties once had its own; they were also known as poor farms, asylums or sanitariums.

These facilities historically have housed the elderly, ill, orphaned and physically or mentally handicapped. St. Joseph County residents who are older than 65, blind, or ages 18 to 65 with mental or physical disabilities are eligible to stay in Portage Manor.

Eby, who served as interim director from September to February, said the homes have graduated from "barbaric" treatment of people with mental illnesses to substantive long-term care. The barred cells toward the back of the building are now used for dry storage, he said, not locking away misbehaving residents.

“It’s not just somewhere to warehouse people," Eby said. "We try to do as much with them as possible. Our staff are really engaged.”
Florida - New Facility for People with Developmental, Intellectual Disabilities Slated for Madison County
By Christine Jordan Sexton, Florida Politics, May 11, 2022

A new $10.5 million long-term care facility for people with developmental disabilities will be built in Madison County in the next 18 months.

The Agency for Health Care Administration announced that Sunrise Community, Inc. is taking advantage of a 2020 law championed by Sen. Gayle Harrell and Rep. Colleen Burton that allows it to build an ICFDD, or intermediate care facility for the developmentally disabled, without obtaining a “certificate of need,” or CON.

AHCA did not immediately provide Florida Politics with Sunrise Community’s application for the CON exemption. The application provides project details such as costs, timelines and services that will be provided.

But the law requires that three separate “homes,” each with eight beds, be built on the ICFDD campus. The beds must be reserved for individuals who require increased levels of behavioral, medical and therapeutic oversight because of severe maladaptive behavior.
In Florida, new ICFDD beds and new nursing home beds — both of which generally rely on Medicaid for reimbursement — usually require a CON, as do new hospice beds.
Oregon's Paid Parent Caregiver Program is set to Expire in July. Families are Fighting to Extend It
By Alma McCarty, KGW-8 News, May 6, 2022
Before the pandemic hit Oregon, state law did not allow the parents of minors with disabilities to be paid as their child's caregiver, but during COVID-19, the Office of Disabilities Services applied for and received a federal waiver allowing it during the public health emergency. With that public health emergency set to end on July 15, the exception will end as well, unless the state takes action to make the temporary policy permanent.

Families of children with serious, round-the-clock needs are calling for this change, with a dwindling number of qualified caregivers and nurse available outside of the home.

Calli Ross and her family have been advocating for policy change even before the pandemic.
"It is ridiculous that this program should be discontinued and parents should be left hanging once again," she said.

Her son, Tens, is seven years old. He was born with 1p36 deletion syndrome, in which a small segment of DNA is missing, and a form of primordial dwarfism. On top of that, he's had several health complications that have led to his total reliance on a ventilator to breathe.

"He's vent dependent. He is oxygen dependent. He requires a specific feeding schedule. He has
moments of crisis where he stops breathing. He has seizures," said Ross.

Due to his disability, he qualifies for more than 500 hours a month of in-home intensive services through Medicaid. A pandemic rule-change allowed his parents and others like them to be paid to provide those services to their children. The Office of Developmental Disability Services (ODDS) told KGW the temporary waiver was put in place to reduce exposure to COVID-19.

"It's life-changing money, but not large. It’s not large, but it’s enough to help families," said Ross.

With the money, Ross said she doesn't have to choose between medications and food. Her family can afford to pay for things not covered by insurance, like a potty training chair or a wheelchair-accessible van. She's set aside some money for tools and intensive therapies for Tens.

If the temporary program ends, the hours Tens qualifies for might not be staffed, due to a shortage of caregivers that was made worse during the pandemic.
Maryland - School District Agrees To Pay $2.5 Million, Make Changes After Pica Choking Death
By Rachael Pacella, The Capital via Disability Scoop, May 10, 2022

The estate of Bowen Levy and the Anne Arundel County Board of Education entered into a consent decree last week under which the system will pay $2.5 million, implement a special safety protocol geared toward children with a specific form of autism and provide special education staffing data to the family of a student who died after choking on a disposable glove at school.Central Special School student Bowen Levy of Annapolis died Nov. 10, 2019, five days after gaining access to a rubber glove and swallowing it. Levy was diagnosed with autism as well as pica, a disorder that involves the eating of non-food items.

In a lawsuit filed last January, his family said the school system was aware of Levy’s pica and failed to provide the one-on-one supervision it had promised.

“The consent decree addresses the chronic staffing shortages in special education and lack of supervision which led to Bowen’s tragic and unnecessary death. The Levy Family filed this suit to make sure no other child is placed at risk like Bowen was,” Tim Maloney, Bryan and Tanya Levy’s attorney, said in a statement. “They will work vigorously to enforce the consent decree to make sure special education programs in the county are properly staffed and supervised and safe for all children.”

The Levy family started a foundation when Bowen was a child to help other area families who have children with autism. The Bowen Foundation for Autism distributes grants, which pay for equipment, therapy and medical treatment, through Arc of the Chesapeake.

The foundation has distributed hundreds of thousands of dollars in aid, and the settlement will give them the ability to make sure the foundation continues in Bowen’s name, forever, Brian Levy said Thursday in an interview with The Capital.

“He was everything I could have asked for in a son,” Levy said.
New York - Bill Targeting Facility that uses 'Aversion Therapy' On Tap in Senate
By Brendon J. Lyons, Times-Union, May 11, 2022

For many parents the Judge Rotenberg Educational Center in Massachusetts has been the only facility to help their children with behavioral issues

Legislation that would ban New York's use of an out-of-state behavioral facility that uses a controversial form of treatment known as "aversion therapy" passed a key state Senate committee this week.The bill, which is poised to be voted on by the full Senate, targets the programming at the Judge Rotenberg Educational Center outside Boston. The center has faced scrutiny for its use of electric stimulation devices (ESDs), which aim to deter injurious behavior by delivering electric shocks to patients. The U.S. food and Drug Administration banned the therapy in 2020 but the Rotenberg center successfully appealed the ban in court. 

The bill has sparked a fierce debate among lawmakers and some parents who say their children have benefited from the unique programs at the residential facility in Canton, Mass. Those parents also have said their children are afflicted with neurological disorders that trigger aggressive and self-harming behavior that resulted in New York facilities declining to care for them.

"As chair of the Disabilities Committee, I have a sacred responsibility to stand up for vulnerable and often voiceless New Yorkers and ensure they are getting the care and services they need to live fulfilling and comfortable lives," state Sen. John Mannion said in a statement. "Fifty years after Willowbrook, I believe it is appropriate for New York to join the 40 other states that have banned electro-shock."

Electric shock therapy and other aversive conditioning, which involves using pain or discomfort to alter a person’s behavior, was banned in New York in 2005. Mannion was referring to the Willowbrook State School, a state-run institution on Staten Island. Revelations of unsanitary and dangerous conditions there prompted New York to deinstitutionalize its treatment programs for individuals with neurological conditions.

But parents of children treated at the Massachusetts facility visited the Capitol this week to pressure lawmakers against supporting the legislation. Many say their children have not been subjected to electric-shock therapy — and never will be — but could lose access to the programs there because New York is expected to discontinue funding for treatment at the facility if the legislation becomes law.

Last year, the Rotenberg Educational Center had 63 adults in its program who were from New York, including 58 whose treatment was funded by OPWDD. Seven of those individuals had been there for more than 20 years, and 32 had been there for between five and 20 years. The center also was providing services to 82 school-aged students from New York, whose treatment is paid for by their New York school districts or social services.
Health News:
Joubert Syndrome: The Link Between Intellectual Disability and Defects in the Hippocampus
American Association for the Advancement of Sciences, Eureka Alert, May 11 2022

An important link has been found between the intellectual disability experienced by children with the rare disease Joubert Syndrome (JS) and defects in the hippocampus. The hippocampus is the part of the brain associated with learning and memory. It also plays a role in various neurological and psychiatric disorders.

Biologists at the University of Bath in the UK, led by Dr Vasanta Subramanian, made this link in animal models by manipulating a gene (one of 34) known to cause JS in humans. Results from the study are published in Human Molecular Genetics.

The findings from the study suggest a link between hippocampal defects, and the learning and memory deficits seen in JS patients. Malformations in the hindbrain (the lower part of the brainstem) are already known to be responsible for many of the physical symptoms associated with JS.“This is the first time we have seen a link between changes to the hippocampus and this disease in mouse models,” said Dr Subramanian. “This is an exciting area of research that we hope to continue making a contribution to. Joubert Syndrome is one of many rare diseases that has a devastating impact on those affected and is now rightly getting the research attention it deserves.”

With further research on animal models, Dr Subramanian and her team expect to deepen their understanding of the causes of JS. In time, they hope drugs will be developed to target some of the genes or proteins involved in the disease, thereby alleviating symptoms or stopping the disease from developing in the first place.

Joubert Syndrome is a rare childhood disease that leads to poor muscle coordination, developmental delay, abnormal eye movements and neonatal breathing abnormalities. It is estimated that between 1 in 80,000 and 1 in 100,000 newborns are affected by the condition.

VOR's Annual Meeting & Legislative Initiate help our families to participate in our organizations, to reach out to their Members of Congress, and to become better advocates for their family members with I/DD.

Those who have attended our June meetings in years past will recall what they spent on transportation to and from D.C... what hotel rooms cost, and what other expenses they incurred while in Washington. We ask that you consider giving a share of that expense, maybe part of the cost of airfare or a night at the Hyatt on Capitol Hill,
or even the cost of a quick lunch in the Longworth Cafeteria!

Any and all contributions will be graciously accepted.

Please help us to help you.
Please help us to help families like yours.
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.
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. 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.


VOR OPPOSES:

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.
Help Us Help:
Families of individuals with severe/profound intellectual and developmental disabilities and autism need a voice in Washington, D.C.

For 39 Years, 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.
Shop at Amazon?

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

  1. Just go to smile.amazon.com instead of the regular Amazon 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. Now, bookmark the Amazon Smile page and paste it into your Bookmarks Toolbar, so that every time you go to Amazon, you go through the SMILE portal.

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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836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377