January 6, 2023

VOR's 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

VOR & YOU:

Happy New Year!

2023 marks VOR's 40th Anniversary!


We would like to thank all of our

families and friends,

who contributed to our 2022 fundraising campaign,

and to all those who have supported us throughout

the past 40 years.

VOR's January Networking Meeting

Tuesday, January 24

4 pm Eastern, 3 pm Central, 2 pm Mountain, 1 pm Pacific


We invite you to join us on Zoom to meet with like-minded advocates and families of individuals with I/DD and autism.


Our topic this month will be a look at the

118th Congress

and the issues that we may be bringing to their attention in coming session.

The forum will be moderated by Roslyn Leehey. and feature a presentation from Gayle Gerdes of Health Policy Solutions and

VOR's President Joanne St. Amand & Executive Director Hugo Dwyer


To register, please write to

info@vor.net

with the subject line "Networking Meeting"

National News:

Congress Approves Boost To Special Ed, Disability Programs

By Michelle Diament, Disability Scoop, January 5, 2023


A newly approved $1.7 trillion federal spending bill will bring more funding for special education while expanding access to ABLE accounts and addressing the use of electric shock on people with disabilities.


The legislation, which funds the government through September, was signed by President Joe Biden just before the start of the new year.


It includes over $15 billion for special education, a $904 million jump over last year, and it extends Money Follows the Person, a Medicaid program that helps people with disabilities move from institutions to community-based living, through September 2027.


In addition, the measure increases the eligibility age for ABLE accounts, a special savings vehicle that allows people with disabilities a way to save money without jeopardizing their government benefits. Since the accounts were established under a 2014 law, they have been limited to individuals with disabilities that onset prior to age 26. With the change, eligibility will expand starting in 2026 to include anyone with disabilities that present by age 46.


The higher age limit, which is expected to make an additional 6.2 million people eligible, had been long sought by disability advocates and others in order to broaden access and increase the number of ABLE accounts opened to help ensure that the program is sustainable.


Separately, the spending bill creates a path for the Food and Drug Administration to ban what are known as electrical stimulation devices. The devices send shocks through electrodes attached to the skin in order to condition people not to engage in self-injurious or aggressive behaviors. They are known to be used at only one facility in the U.S. — the Judge Rotenberg Educational Center in Canton, Mass., which serves children and adults with developmental disabilities as well as those with behavioral and emotional problems.


For years, advocates have pushed to end the practice and in 2020 the FDA finalized a ban on electrical stimulation devices citing an “unreasonable and substantial risk of illness or injury.” But, the regulation was overturned when the U.S. Court of Appeals for the D.C. Circuit determined that the agency had overstepped its authority. Now, with the new legislation, Congress has clarified that the FDA has the right to institute such a ban.


“This opens the door for FDA to pass another ban without fear that it will be struck down on the same grounds,” said Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, who called the development “a step forward.”


Continued


Note: The families who support the use of electronic shock therapies do so with full knowledge of the treatment, and believe that the pain caused by this treatment is better than the pain of their loved ones' self-inflicted injuries.


VOR has not taken a position on the use of electronic shock devices, we believe the very personal and often difficult decision to choose the best form of treatment an individual with I/DD, autism, or behavioral disorders belongs to the family or guardian of the individual, not to legislators or self-advocacy organizations.


We are concerned that this legislation could lead to further legislation to eliminate options unpopular with one or another group of advocates and to limit the choices available to families with loved ones with more complex needs.

Major Study Links Staff Vaccinations to Lower Resident Deaths, Calls for Updated Booster Guidance   

By Kimberly Marselas, McKnight's Long-Term Care News, January 3, 2023


Policymakers should rethink their “stagnant” approach to booster shots, argue the researchers behind a new, first-of-its kind national study linking COVID-19 vaccination of nursing home staff to significantly improved resident outcomes over time.


As little as a 10-percentage point increase in staff vaccinations delivered lower weekly case counts and deaths among residents in the first months after shots became available, according to an analysis of federal vaccination data from more than 15,000 nursing homes. The landmark study was published Thursday in JAMA Network Open.


University of Chicago researchers calculated that, over the course of a year, a 10-point vaccination increase would have prevented 102.9 cases per 1,000 residents, 15.6 deaths per 1,000 residents and approximately 21,000 staff infections nationwide.


Extrapolating those results to all nursing homes in the US would have resulted in more than 20,000 fewer nursing home resident deaths in a year, co-author R. Tamara Konetzka, PhD, Louis Block Professor of Public Health Sciences at the University of Chicago, told McKnight’s Long-Term Care News Wednesday.


But the study also found that the staff-to-resident benefits waned as the omicron variant took hold in late 2021. No rules mandating that workers have updated COVID shots were in place at that time, nor are they today.


“Current vaccination rates would never have been achieved without [a] mandate,” said Konetzka, who co-authored the paper with Soham Sinha, a PhD student in health economics at The University of Chicago.

 “As the pandemic evolves to include newer, more infectious strains of the virus, evolving policies in the form of extending mandates for booster doses for staff in nursing homes will be critical to prevent a return to the early days of the pandemic when mounting nursing home deaths seemed almost inevitable.”


The first US COVID booster shot became available in September 2021. But with its then-proposed mandate under intense public and legal scrutiny, the Centers for Medicare & Medicaid Services did not dictate additional shots for healthcare workers. Even after the mandate was upheld by the Supreme Court in January 2022 — and as additional boosters, including a bivalent shot, were formulated to protect against more variants — federal regulators never required healthcare workers get more than their initial COVID vaccine.


In an email to McKnight’s, Sinha said that the mandated initial regimen (two doses of Pfizer, two doses of Moderna, or one dose of the J&J vaccine) “no longer constitutes appropriately sufficient vaccination.”


“It’s not that the vaccines stopped working, but that what we think of and mandate as sufficient vaccination needs to evolve along with the disease variants,” Sinha said. He pointed to a recent study of nursing home residents that found a lower risk of COVID infection and hospitalization after boosters were widely adopted by two large US nursing home systems after omicron took hold.


Continued

Sheltered Workshops & Employment Choice:

Note: The following article reflects a commonly held view that anyone with I/DD or autism who desires to work can be accommodated in the competitive marketplace, participate in work environments without the need for supplemental supports, and deserves minimum wage or better for their work.


VOR supports competitive employment, but we also recognize the fact that not everyone can be reasonably accommodated by most businesses, nor that they can always compete with non-disabled workers in productivity, customer support, or any number of other job requirements. We also recognize that for some, the wages are the least important part of the job.For some, the value of working, developing skills, contributing to their community, and engaging activities in a community of their peers can be far more rewarding than a paycheck.


Sheltered workshops offer a unique, safe opportunity for individuals to grow. They are voluntary, Employees must apply for a new certificate at regular intervals. They may quit any time they wish, and they may not be fired from their positions for not meeting the requirements of a competitive workplace (See Pennsylvania Walmart article in the State News section of this week's newsletter).


We understand that sheltered workshops and 14(c) certificates fill a void for people who would not be engaged in competitive employment opportunities. Both programs can exist (and DO exist) side by side. They serve different individuals within the diverse spectrum of the I/DD and autism communities.


On reading this article, please also read the comments and replies to this opinion, especially the "Reader's Picks" section.


Opinion: My Daughter Expects to Work. Will She Make Only $3.35 an Hour?

By Pepper Stetler, The New York Times, January 4, 2023


My daughter expects to work. When she was about 5 years old, one of her favorite bath time activities was playing with a set of cups that she would fill up carefully and place on the edge of the tub. “Mo-ka-ma-KE!” she called out. She was imagining she was a barista, a job she had seen performed hundreds of times at the coffee shop.


If my daughter, who has Down syndrome, can imagine herself working in a job that allows her to participate in her community and gain independence, then why can’t employers do the same?


Part of the answer lies in the Fair Labor Standards Act of 1938 which established a federal minimum wage, guidelines for overtime pay and child labor restrictions; it also created 14(c) certificates, which permit employers to pay people with disabilities less than minimum wage — and the law puts no limit on how much less.


Nearly 39 percent of Americans with disabilities were employed in October, with at least 70,000 working for 14(c) certificate holders, many of them “sheltered workshops” for adults with physical or intellectual disabilities. With no floor on wages, sheltered workshops have impoverished and isolated generations of people with disabilities.


But beyond fair pay we need to consider how we can more effectively support people with disabilities in the mainstream work force.


Continued


The following is one of the replies, written by a VOR member from Minnesota:


"Another One-Size-Fits-All argument. This article makes the assumption that all people with disabilities, regardless of the type of disability, severity of disability, and region where they live are capable of competitive level work and WANT to be a minority among nondisabled employees.


The few cases illustrated in this article are people who already have those choices available to them. Eliminating the choice to work in a specialized, supported environment with trained staff for wages that are commensurate with prevailing minimum wage will not limit the freedom to choose competitive work. All it does is prevent otherwise unemployable individuals the opportunity to work at all.


Commensurate wages are not “subminimum”. They are a very fair disability accommodation to compensate these people for their work based on productivity. If a person is able to produce about half of what an average employee can produce in an hour they are paid accordingly.


The bottom line is that without this accommodation, most of these individuals would never have a job at all. My daughter and her community of friends LOVE feeling productive, having a meaningful routine, and a developmentally appropriate place to go each day. It is their CHOICE to be there. Eliminating an informed choice that is desired by thousands of severely disabled people is highly discriminatory. It is eliminating their right to work.


--- Outstatefam (Permalink: https://nyti.ms/3GhSWZM#permid=122361593)

State News:

South Carolina Case Highlights Need for Attendants on School Buses

By Carol Brzozowski, School Transportation News, January 4, 2023


School bus driver, school district repeatedly fail to respond to beating of 4-year-old girl who was nonverbal 


A special investigative report that aired in December on television station Queen City News in Charlotte, North Carolina, detailed a 2018 incident in neaby Chesterfield County, South Carolina, when a nonverbal autistic child was attacked 96 times by one boy on a school bus ride.


Upon arriving home, her parents — noting numerous bruises and bite marks — took her to the emergency room and sent photos to their daughter’s teacher.


A subsequent law enforcement investigation including a review of onboard school bus camera footage led to the substitute school bus driver being charged with one count of unlawful neglect of a child.


A Chesterfield County grand jury indicted him, but the charges were ultimately dismissed by a Fourth Circuit deputy solicitor 18 days before the girl’s parents reached a $2.2 million settlement with the school district, bus driver and the South Carolina Department of Education in October.


“It is the goal of the Chesterfield County School District to ensure all schools are safe and all students are growing,” noted Chan Anderson, Ed.D, the new Chesterfield County School District superintendent. “This includes continuing to take measures that will increase the safety and well-being of all stakeholders involved in the transportation entity of our school district. This does not include making comments concerning litigation, including matters involving specific students, whose rights are protected by federal law.”

The previous superintendent, Harrison Goodwin, left Chesterfield County shortly after the incident and is now the superintendent at nearby Kershaw County School District. School Transportation News left several messages with Goodwin seeking comment, but he did not respond.


In a deposition, sections of which were aired during the news report last month, Goodwin admits to knowing about behavior issues on special needs routes prior to the incident. When asked if the district should add attendants to these routes, he suggested a cost analysis be performed. But no such analysis occurred.


Meanwhile, a South Carolina Department of Education school bus driver trainer made repeated inquiries with the school district’s then director of special education regarding complaints about no attendants on these buses.


Following the incident, South Carolina State Rep. Richard Yow of District 53 — encompassing Chesterfield, Darlington and Lancaster Counties — drafted two bills.


H3067 requires attendants on any bus transporting special needs students. A second bill, H3291, makes the school bus a “long arm extension” from the classroom, Yow said, adding “if you’ve got a child with severe health issues that could be dangerous for the child, the driver must be made aware of that type of situation so that if something were to happen, they would know how to react and extend lifesaving measures to that child.”


Read the full article here

Pennsylvania - Walmart Accused Of Wrongfully Firing Greeter With IDD

By Bret Pallotto, Centre Daily Times via Disability Scoop, January 6, 2023


A former longtime Walmart greeter recognized by at least hundreds of people in Happy Valley sued the retail behemoth recently, alleging he was wrongfully and unjustifiably fired.


Gregory A. Focht, who worked for the world’s largest retailer for nearly 27 years, alleged he was fired in July 2021 because he occasionally “mistakenly clocked in and out shortly before or shortly after he was allowed to do so.”


He worked during his final year under a new supervisor, who attorney David Gaines described as “much more rigid.” Focht was summarily fired one day after punching out several minutes before his shift was scheduled to end.


Focht, 56, has lived with the lifelong effects of a generalized intellectual and developmental disability. Gaines wrote the disability is similar to — but not the same as — Down syndrome.


Rather than provide reasonable accommodations, Gaines wrote the company “aggressively applied Byzantine employment policies … to a limited number of innocent mistakes.”


“Walmart’s failure to in any way assist Mr. Focht — an individual with a known, open, and obvious intellectual disability — with the clocking in and out process is the very definition of a failure to accommodate,” Gaines wrote in the 30-page lawsuit.” Mr. Focht was doing his best to manage the clocking in and out process on his own. Rather than embrace that positivity, Walmart unlawfully terminated Mr. Focht’s employment.”


Focht is seeking front pay, back pay, compensation for lost benefits, compensatory and punitive damages. Gaines alleged the business violated the Pennsylvania Human Relations Act and the Americans with Disabilities Act, a 1990 federal law that prohibits discrimination on the basis of disability.


Read the full article here

Minnesota - Mental Health Advocates Address New Hope’s ‘Drastic’ Decision to Shut Down Group Homes

By Kirsten Swanson, KSTP News, January 5, 2023


Mental health advocates say the city of New Hope took “a very drastic step” when it used a rental licensing ordinance to shut down two state-licensed facilities that cared for people with disabilities.  


In a letter sent to New Hope’s mayor and city council members on Tuesday, four local nonprofit organizations that advocate on behalf of individuals with mental health issues warned of the dire consequences of the city’s decision.


The decision displaced nearly a dozen individuals who struggle with severe mental illness and other disabilities.


Sue Abderholden, executive director of NAMI-Minnesota, said she began looking into the situation after seeing reporting from 5 INVESTIGATES last month.


“We were concerned that New Hope wasn’t looking at the larger picture, that people with mental illnesses, including people with serious mental illnesses, need to live in the community,” she said.

Last summer, the city began citing the two group homes on multiple occasions for “disorderly behavior” violations after police responded to disturbances in the group homes, nuisance calls, and a drug overdose death. 


That behavior, according to New Hope’s acting city manager and police chief Tim Hoyt, justified the city’s decision to revoke the rental licenses, effectively evicting the individuals who lived there.


“We want to make sure the tenant that is living in these group homes are safe,” Hoyt said last month during an interview with 5 INVESTIGATES.


“When I look at what was cited, you know, as the reason to close these homes, I don’t think it was about frankly, safety,” Abderholden said, adding she believes the city’s decision to use a drug overdose death as a citation was “particularly cruel.”


In the letter, advocates also warn the decision to shut down the group homes could have a chilling effect on other providers and staff, especially in situations when police are needed to assist an individual experiencing a mental health crisis.


“We don’t want people to be afraid to call 911 when they need it,” Abderholden said. “It shouldn’t be used as a weapon, and it shouldn’t be used to evict people.”


Read the full article here

Please share this offer with your loved one's

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 receive our newsletter.


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


info@vor.net


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:

Currently there are no bills in Congress for us to support or oppose.


(Currently, there is no congress, per se)


Please watch this space for information as bills affecting people with I/DD and autism are introduced.


~~~~~~~~~~~~~~~~~~~~~~~~


[Please click on blue link to view information about the bill]


VOR SUPPORTS:



VOR OPPOSES:



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