February 25, 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's Legislative Initiative, 2022

Sunday, May 15, 2022
On Zoom
To be followed by Zoom meetings with Congressional Offices May 16 - 19

VOR Annual Meeting

Sunday, June 12, 2022
On Zoom

Due to the ongoing Covid pandemic and the continued lockdown of many congressional offices in Washington, D.C., we are holding our annual events online via Zoom again this year. We ask members to please mark the dates in your calendars.
More information on how you may participate in these events will be coming soon.
VOR's Networking Meeting on the DSP Crisis

Video from our Zoom Meeting on February 24th
has been posted on our YouTube page.
The link is available on our website, at
VOR & The Coalition for the Preservation of 14c:
A few months ago, VOR's Harris Capps encountered a newly formed group of advocates named the Coalition for the Preservation of 14(c). Since Harris' son works in a vocational center under a 14(c) certificate, the continued attacks on the 14(c) programs has been one of his great concerns in recent years. https://preserve14c.org

VOR has been fighting preserve 14(c) programs for several years. While we haven't been alone in this struggle, it has been hard to gain much traction in our attempts to inform legislators about the need to protect this program. The Obama, Trump, and Biden administrations have all taken actoin against 14(c) certificiate programs. The Administration for Community Living, Department of Labor, key members of the House and Senate, and several national I/DD advocacy groups have been determined to shutter these programs.

In just a few month's time, the Coalition for the Preservation of 14(c) has set quite an example for advocates everywhere. Working with the help of the legal team at K L Gates, they have managed to schedule over 40 meetings with congressional office staff in the past few weeks. VOR's Hugo Dwyer, Gayle Gerdes, and others have taken part in abot 15 of those meetings, with more scheduled in the weeks ahead. We are proud of our partnership with the Coalition and are grateful for the chance to help preserve this program that provides employment opportunities for individuals with I/DD.

Occupational Services wants to Preserve 14(c) Organizations for People with Disabilities
By Shawn Hardy, Echo Pilot, February 21, 2022

Jack Shoemaker of Greencastle loves to work. It's like pulling teeth for his parents, Carolyn and Barry Shoemaker, to convince him to go on vacation.

Michelle Lane is breathing a temporary sigh of relief that with the Build Back Better Act stalled, employment through Occupational Services Inc. will continue — at least for now — for Jack and dozens of other local residents with intellectual and developmental disabilities.

Based in Chambersburg, the non-profit OSI was founded in 1957 and is marking its 65th year helping "individuals with disabilities or other barriers to employment to lead more productive and meaningful lives by maximizing their abilities to achieve their highest potential through vocational programs and employment services," according to its website.

Lane, OSI's executive director, is part of the nationwide Coalition for the Preservation of 14C, which is amping up efforts to protect the future of commensurate wage work center programs. At sites like OSI, some employees are paid a "piece rate" rather than an hourly wage.

A small section of the 2,000-plus page Bill Back Better Act is aimed at moving away from organizations certified by section 14(c) of the Fair Labor Standards Act under which people with disabilities may earn less than minimum wage.
The most recent challenge has been tied to efforts to raise the minimum wage, but this was not the first time 14(c)s have been in the bull's eye and some bad seeds can taint the whole bunch, according to Lane.

"Those kind of stories hit the media," she said, citing one boarding home where the residents were basically doing forced labor.

The Coalition for the Preservation of 14C is working to educate lawmakers on why their organizations are important and that they do not take advantage of people with disabilities, who are receiving pay in line with what they do on the job.

"We really think our congresspeople don't understand," Lane said.

Workplaces like OSI may be the only opportunities for meaningful employment for some 100,000 individuals with disabilities across the country "who rely on commensurate wage work centers for their employment with extensive accommodations and supports," according to a position paper the coalition distributed to lawmakers in January.

The paper highlights the value of 14(c) organizations for people with disabilities and their communities, outlines strict federal and state guidelines they must meet and says 14(c) should not be tied to efforts to raise the minimum wage. It is not financially feasible for some disabled workers to be paid minimum wage because that is higher than their level of productivity and they have additional needs, such as job coaching, according to the coalition.

"These providers offer a safe environment, with professional staffing, to allow individuals to thrive in an employment setting, work with their peers and others, and receive a paycheck," the paper says. "Ultimately, Congress should take action to ensure that the most vulnerable members of the workforce, including those with significant intellectual and developmental disabilities, are not abandoned by an ill-advised wholesale elimination of the 14(c) program."

State News:
Nearly 200 People are Locked Down, Living in Inhumane Conditions at N.J. Nursing Home
By Susan K. Livio and Ted Sherman, NJ Advance Media, February 19, 2022
They live three to a room, in a space that is visibly dirty and smells like urine and feces. They have serious mental illnesses, developmental disabilities and traumatic brain injuries and are segregated from the rest of the nursing home.

Woodland Behavioral and Nursing Center at Andover in Sussex County, now facing a widening investigation into allegations of abuse and neglect, confines nearly 200 residents with mental illness and developmental disabilities on a locked floor that operates like an “unlicensed psychiatric hospital,” charged the leader of a federally funded legal group that advocates for the human, civil, and legal rights of those with disabilities.

After visiting the facility Wednesday, Gwen Orlowski, executive director for Disability Rights New Jersey said she immediately contacted the commissioners for the departments of Human Services and Health and urged them to go see it for themselves.

The third floor is home to 196 people diagnosed with traumatic brain injuries, mental illness or developmental disabilities, or recovering from strokes, according to Orlowski. They live three to a room, in a space that is visibly dirty and smells like urine and feces. The floor is not locked, but no one can use the elevator to leave without permission, she said.

Orlowski stressed hat the frontline staff appeared dedicated and were helpful. “The staff I saw working there today are working under extraordinary circumstances,” she said.

Taxpayers foot the bill for the roughly 450 people who live at Woodland. The Medicaid program, which is state and federally funded, pays $216 a day per resident from New Jersey, according to Human Services spokesman Tom Hester. About 70% of the residents are from New Jersey, with the remaining 30% coming from New York, which also pays $216 per resident per day.
For many years, New Jersey has lacked sufficient supervised housing for people with disabilities, she noted. Many become homeless and wind up in nursing homes, she said.

Orlowski said she has conveyed to the state her concerns that Woodland may be transferring out residents.

“That is of significant concern for us. We don’t want people traumatized by a quick move that won’t meet their needs,” Orlowski said. “It’s important to do independent assessments. The state absolutely understands that is critically important.”

“We want to make sure they are transferred to the right setting with the rights support,” she said.

Woodland’s future, meanwhile, may be in doubt.
Federal regulators have given the owners until March 3 to remedy a long list of deficiencies or risk losing all Medicaid and Medicare funding. The federal oversight agency, the Centers for Medicare & Medicaid Services, said Woodland has amassed a list of violations that place residents in “immediate jeopardy,” which include a lack of monitoring of residents with COVID-19 symptoms and vaccination rates.

The latest inspection report does not identify the problems Orlowski reported to the state concerning the locked third floor.

“We have a broken system that funnels those people into nursing homes,” she said. “What COVID did was shine a light on how broken the long-term care system is.”

Idaho - In a Pandemic, is it Price Gouging to Charge a Premium for Nurses?
By Audrey Dutton, Idaho Capital Sun, February 21, 2022

As the delta variant crashed down on Idaho last fall, a hospital staffing shortage turned into a staffing crisis — and gave way to an expensive swap.

Hospitals would lose nurses to lucrative, short-term gigs with staffing agencies that offered upwards of $4,600 to $8,000 per week, sometimes with housing allowance on top of the wages. And every time a nurse left, their job had to be filled. So, hospitals turned to those same staffing agencies to fill job openings, and the agencies charged the hospitals a premium on top of the worker’s own wages and benefits.

The same thing has happened in all health care facilities, according to the representative of an industry group that wants to set some boundaries on what staffing agencies can charge.

A bill introduced on Feb. 11 and referred to the Senate Commerce and Human Resources Committee would add temporary health care staffing as a category under Idaho’s consumer protection law that forbids price gouging — charging “an exorbitant or excessive increased price” during an emergency.
Other states, industry groups and members of Congress have mulled similar bills and sought inquiries into the high rates charged by health care staffing agencies during the pandemic.

For long-term care facilities, those that accept patients with Medicaid health insurance cannot afford to pay higher wages, he said.
Just as in hospitals, jobs in nursing homes, assisted living or group homes can be physically and emotionally taxing. Health care staff have spoken of feeling underappreciated and overworked during the pandemic, often because the staffing shortages have forced them to take on more work.

When offered a higher wage by a staffing agency, some of them jump at the opportunity to at least make more money — or, in free-market terms, getting paid what they are worth — and their departure worsens the staffing shortages.

“It’s a downward spiral,” said Vande Merwe, describing the phenomenon that has become well-known in the pandemic. “You kind of have to use agency (staff) because there’s no other choice. … One hospital told me the nurse is being paid $75 an hour, but the rate (charged) to the hospital is $250 an hour.”

Washington - Editorial: Those Caring for Disabled Need Better Compensation
By The Herald Editorial Board, February 22, 2022
Amienata “Ami” Sankareh is one of about 12,000 long-term health care workers in Washington state who provide direct support services to about 4,600 people with developmental disabilities.

The Everett single mother, who came to the United States from Gambia, has worked in care home settings for about five years. During a normal work day she usually cares for about four clients, work that includes getting them up, showered, dressed, fed, given medications and assisted with activities. Two of her current clients are in wheelchairs.

“It’s difficult work, of course,” Sankareh said. “But I like my job and I love my clients. I want to work to help them.”

But it’s also a job that now pays about the same as most other minimum wage jobs in the state, currently $14.49 an hour. Some 14 years ago, most direct support professionals earned about 24 percent more than minimum wage; that figure is now about 5 percent above minimum wage.

For Sankareh, who also is raising a 12-year-old daughter, her current pay rate means that she must work two jobs — for a total of about 60 to 70 hours each week — to make ends meet. Ideally, Sankareh said, she wants to be able to work fewer hours and still support her family and spend more time raising her daughter.

And more than just an economic issue for herself and her daughter, Sankareh said, the low pay for the profession — which requires 75 hours of training before employment as a direct support professional — has meant difficulty in attracting and retaining fellow workers, especially during the pandemic. As well, there’s an element of equity to consider; the majority of those providing this care are from communities of color.

“We’re in the middle of a huge staffing crisis,” said Scott Livengood, the chief executive for Alpha Supported Living Services, a Bothell-based nonprofit agency providing supportive living and group home services to adults and children in Snohomish, King and Spokane counties.

Care facilities, Livengood said, are seeing annual staff turnover of about 50 percent. As the minimum wage has increased in Washington state — increasing this January from $13.50 an hour last year — a demanding field has fought to attract and retain workers.
One new co-worker, Sankareh recalls, showed up on her first day and then didn’t return. She and her co-workers are left shorthanded, which adds to the job’s difficulty and spreads the care to clients more thinly.

But it’s difficult for agencies such as Alpha, Livengood said, to increase pay enough because its services are funded by fixed Medicaid reimbursements, split between federal and state governments. Livengood and others in the supported care sector have made a request to the state Legislature, as it prepares a supplemental budget, to increase Medicaid reimbursements so that Alpha and other providers can raise wages to $18 an hour and provide regular cost-of-living increases to account for inflation.

Also making the case for an increase in the state budget: The state ranks 46th in the country, when measuring the gap between the minimum wage and that paid to direct support professionals.

Lawmakers have been receptive to the request, Livengood said, and good news on state revenue forecasts is also providing optimism. “But we’ve been pushed aside for a number of years. It feels like now is the time to address this,” he said.

At the same time, state lawmakers are looking to address a loss of nurses and health care workers in hospitals and other care centers, including legislation that would require more state oversight of hospital staffing committees and set staffing standards for specific patient units in hospitals, again with the intention of ensuring adequate staffing that eases the daily demand on those providing care and slows and exodus of those leaving the profession. House Bill 1868 passed the House last week and is now under consideration in the Senate.

Minnesota - 10 Cardinal of Rochester Group Homes Will Be Closed
By James Rabe, KROC News, February 22, 2022
Cardinal of Minnesota is closing 10 of its 55 homes by March 5, 2022. It's shocking news to those of us on the outside of the situation, but to those on the inside (from clients to families and of course the people working in the group homes) it can lead to anxiety like you don't want to imagine.

Cardinal of Minnesota's mission is to provide a safe, happy, healthy environment for its clients. It was founded in 1995 by Jack Priggen, who'd spent 20 years in the intellectual/developmental disabilities industries. They currently have locations in Rochester (home office), Austin, Spring Valley, Harmony, Charfield, Winona, Red Wing, and Bemidji.

According to the Rochester Post Bulletin, the closures leave about 30 families with major uncertainties and little time to find solutions. Some of the group homes will likely be taken over by other organizations, though none have been mentioned by name.
The homes that are completely shut down though...what happens?

[T]his news isn't surprising. [F]or years now it has been very hard to hire enough people to fill all the needs in and around Rochester. Not just at Cardinal, but other organizations as well. They've had to close homes too, but were fortunate to find room for all their clients in other group homes.

Medical News:
Signs of Autism Differ in Brains of Boys, Girls
By Robert Preidt, KOAM News Now February 21, 2022

Researchers have discovered differences between the brains of girls and boys with autism that they say may improve diagnosis of the developmental disorder in girls.“We detected significant differences between the brains of boys and girls with autism, and obtained individualized predictions of clinical symptoms in girls,” said study senior author Vinod Menon, a professor of psychiatry and behavioral science at Stanford University.

“We know that camouflaging of symptoms is a major challenge in the diagnosis of autism in girls, resulting in diagnostic and treatment delays,” Menon said in a university news release.

In the study, he and his university colleagues used artificial intelligence to analyze MRI brain scans from 637 boys and 136 girls with autism worldwide.

Girls had different patterns of connectivity from the boys in several brain centers, including motor, language and visuospatial attention systems. The largest differences between the sexes were in a group of motor areas. Among girls, the differences in motor centers were linked to the severity of their motor symptoms. Girls whose brain patterns were most similar to boys tended to have the most significant motor symptoms of autism.

The researchers also identified language areas that differed between boys and girls, and noted that previous studies have found greater language impairments in boys with autism than in girls with autism.
The brain differences between girls and boys with autism were not seen in youngsters without the condition.

Autism is diagnosed in four times as many boys as girls, and most autism research has focused on males, the researchers noted.

The study was published online Feb. 15 in the British Journal of Psychiatry.

Kidney Injury From Too Many Medicines Shows Risk to Intellectually Disabled Patients
By Lindsey Shapiro PhD, Prader-Willi Syndrome News, February 22, 2022

A case of acute kidney injury in a woman with Prader-Willi syndrome (PWS) and intellectual disability was attributed in a recent report to the use of multiple medications.

The case shed lights on how vulnerable people with an intellectual disability are to being over-medicated, with the complications that raises. Its researchers noted that consistent and comprehensive care with an established primary care doctor can help to prevent such incidents.
“Our case illustrates that patients with [intellectual disability] are at increased risk for [medication]-related adverse outcomes, which are preventable medical errors,” the team wrote. “Continuity of care by an established primary care doctor is critical in managing patients with [intellectual disability].”

The report, “Polypharmacy in a Patient With Intellectual and Developmental Disabilities,” was published in the Cureus Journal of Medical Science.

PWS is usually accompanied by a wide range of coexisting conditions, including obesity, thyroid problems, high blood pressure, and diabetes. Most PWS patients also have intellectual and developmental disabilities (IDD).

Chronic conditions associated with PWS are often managed with long-term use of several medications, which can lead to adverse reactions including kidney injury. Patients with IDD usually rely on doctors and caregivers to manage their medications, and on average receive more medications and have more side effects than those without IDD.

“Clear communication between healthcare providers and caregivers is vital in orchestrating appropriate healthcare delivery to adults with IDD. Additionally, prescribers, pharmacists, and caregivers should be specifically trained to care for patients with IDD,” researchers concluded.

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.


S. 3417 - The Latonya Reeves Freedom Act of 2021 - This bill may be seen as the offspring of the Disability Integration Act from the 116th Congress. It misrepresents Olmstead, and contains provisions that would be harmful to the existence of ICFs, including a section that would promote lawsuits against larger congregate care facilities.

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.
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?

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