December 18,, 2020
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

Spotlight on: The Coronavirus Vaccine
Disability Advocates Urge People To Get Vaccinated Against COVID-19
By Michelle Diament, Disability Scoop, December 17, 2020
As the first COVID-19 vaccines become available, advocates say that people with developmental disabilities should get vaccinated and they are pushing for this population to be eligible as soon as possible.

In a statement, 20 advocacy groups are calling on people in the disability community to be immunized.

“We encourage our stakeholders to receive the COVID-19 vaccine,” reads the statement spearheaded by the Autism Society of America and signed by Autism Speaks, Easterseals, the National Association of Councils on Developmental Disabilities, the National Association of State Directors of Developmental Disabilities Services and the National Down Syndrome Society, among others.

The groups said that getting vaccinated will “make it significantly less likely you’ll get COVID-19” and it “may keep you from getting severely ill if you were to contract COVID-19.” In addition, doing so “will help protect vulnerable people around you.”

For those with disabilities, the advocates said that widespread vaccination could lead to an end to remote learning, resumption of regular therapy, support and respite care services, improved employment opportunities and it may allow individuals living in group homes and other congregate settings to see their families and friends again.
The benefits of vaccination could be greatest for those with more significant challenges, said Angela Geiger, president and CEO of Autism Speaks.

The push from disability advocacy groups comes as the first COVID-19 vaccine from Pfizer-BioNTech started to be administered in the U.S. this week. With limited supply, the initial shots are going to health care workers and residents of long-term care facilities.

Advocates have been speaking out for months about the need for people with developmental disabilities to be prioritized in the distribution of any COVID-19 vaccines given the high risks they face. Research shows that people within this population who contract the virus face a two to 10 times greater risk of dying as compared to others.

Nonetheless, only 10 states have specifically addressed people with developmental disabilities in their plans to allocate coronavirus vaccines, according to a new report from the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation.
As the report from ANCOR in the above article incdicates, different states have very different plans on who receives the vaccine in different phases or tiers of the rollout. Below are articles from a few states showing how different those plans may be. We encourage our members to find out the plans for your state.
Connecticut
From CT Business and Industry Association, December 17, 2020

CT received 31,000 doses of the COVID-19 vaccine in the first week of distribution and expects to receive 100,000 doses in week two.

“Half goes to healthcare personnel and the other half goes to long term facilities to enable vaccination of both staff and residents,” Benjamin Bechtolsheim, COVID 19 vaccination program director for the state Department of Public Health, said during a Dec. 15 webinar.

Per a state priority list, healthcare personnel, long term care facility residents, and medical first responders are the first to receive vaccines in Connecticut, known as the Phase 1A group. The Phase 1B group includes critical workers, people in other congregate settings, adults over 65, and high-risk individuals under 65.
Texas - More than a Million Texans will Receive COVID-19 Vaccination This Month, Gov. Abbott Says
By Bryce Newberry and Drew Knight, KCENTV, December 17, 2020

The governor explained that Texas will be getting a weekly allocation of the vaccine every week. UPS will be standing by to make that initial delivery.

He said that before Thursday, 95,000 doses of the vaccine had already been delivered. On Thursday, 129,000 more will be delivered, for a total now of 224,000. With the Moderna vaccine expected by next week, he said the state should be able to have more than a million people vaccinated by the end of the month.

The facilities that are set to be receiving these voluntary vaccines are hospitals, healthcare centers, clinics, pharmacies, free-standing emergency rooms, urgent care centers, long-term care facilities as well as health departments, state hospitals and state-supported living centers.
California - What We Know About The Vaccine Rollout
By Kat Schuster, The Patch, December 13, 2020

California public health officials have said that 2 million vaccines could arrive in California by the end of December, providing the first dose to 2 million. Second doses will follow as more shipments are approved and sent out.

Healthcare workers and residents of "long-term care facilities," will receive the first dose, Newsom has said.
During Phase 1a of the rollout, state officials have drawn up the following three tiers of Californians who will be eligible to receive the first dose:
Tier 1
  • Acute care, psychiatric and correctional facility hospitals
  • Skilled nursing facilities, assisted living facilities, and similar settings for older or medically vulnerable individuals
  • Also, in concordance with ACIP, residents in these settings
  • Paramedics, EMTs and others providing emergency medical services
  • Dialysis centers
Tier 2
  • Intermediate care facilities for persons who need non-continuous nursing supervision and supportive care
  • Home health care and in-home supportive services
  • Community health workers
  • Public health field staff
  • Primary Care clinics, including Federally Qualified Health Centers, Rural Health Centers, correctional facility clinics, and urgent care clinics
Tier 3 - Other settings and health care workers, including
  • Specialty clinics
  • Laboratory workers
  • Dental and other oral health clinics
  • Pharmacy staff not working in settings at higher tiers
Pennsylvania's COVID-19 Vaccine Plan: FAQ's
From WENY News, December 17, 2020

The department will work to get the vaccine out to Pennsylvanians in three phases, following the CDC guidelines regarding supply, demand and risk of the vaccine.
Phase 1: There may be limited supply of COVID-19 vaccine doses available in the first phase. Initial efforts will focus on reaching the following populations:
  • Healthcare personnel;
  • Emergency Medical Services first responders; and
  • Residents and staff of congregate care settings.
Phase 2: We anticipate a large number of vaccine doses available. Efforts will focus on ensuring access to vaccine for:
  • Phase 1 critical populations who were not yet vaccinated; and
  • General population.
Phase 3: In this phase, there should be a sufficient supply of vaccine doses for entire population. Efforts will focus on ensuring the entire population will have access to the vaccine.
Massachusetts - DDS Residents are Likely to get Vaccinated in January; Questions Remain about Vaccine Priority List
Bu Dave Kassel, The COFAR Blog, December 16, 2020

Residents of Department of Developmental Services facilities will get vaccinated in January, according to an email this week from DDS Commissioner Jane Ryder to a COFAR member.

Ryder’s message still seems ambiguous, however, as to exactly where DDS residents fall within Phase 1 of the state’s COVID-19 Vaccine distribution plan.

It appears residents of DDS group homes and developmental centers are included in Phase 1 of the plan, which stretches from this month through February. But DDS facilities are not specifically mentioned in the plan, and Ryder’s statement appears unclear as to whether DDS clients are closer to the top or the bottom of the Phase 1 priority order.
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A Christmas Wish:
Missouri - Capitol Projects Provides Sense of Pride for People with Intellectual Disabilities
By Jeff Haldiman, News Tribune, December 18, 2020
For several charitable organizations, the holiday season — like the rest of the year — is a time to help those dealing with some of life's toughest problems and providing solutions to those problems. In the week leading up to Christmas, the News Tribune is showcasing people whose lives have been impacted by United Way of Central Missouri partner agencies and supporters in the annual "A Christmas Wish" series.

Ronnie Schaefer started working at Capitol Projects not long after its doors first opened just more than 50 years ago.

The sheltered workshop on East McCarty Street employs residents with intellectual disabilities from Jefferson City and surrounding communities, subcontracting with businesses to do a variety of jobs such as small parts assembly and mailroom tasks.

Schaefer, who started in February 1970, has the most years of service of any current Capitol Projects employees.

The first Capitol Projects site was just below St. Peter Catholic School on West High Street, said Ronnie's sister, Rita Storey.

"Ronnie attended school for a while, but it just really wasn't a good fit for him," Storey said. "The workshop had only been operating for a little over a year when Ronnie's mom learned of it and the services it might offer Ronnie and our family."

Capitol Projects Executive Director Tami Bock said Schaefer is a hard worker and a favorite of everyone.

"Not only did Ronnie have a place to be productive, but it gave his family the peace of mind that he was in a safe environment with people that cared for him and where he could be happy," Bock said.

Storey said Capitol Projects was the best thing for Schaefer and their family, and the people at the shop have become an extended family.
"Ronnie looks forward to going to work every day because it gives him a purpose," Storey said. "He loves to interact with the staff and his friends at the workshop. He really enjoys his days there. He likes to tease them all — he thinks he's the boss. If it wasn't for the workshop, I'm not sure how I could keep him occupied every day. The staff looks after him and the other employees and cares about all of them so much."

An example of just how important Capitol Projects is to Ronnie became apparent to Storey and Bock when Schaefer spent an extended time in the hospital a few years ago.

"We honestly weren't sure that Ronnie would ever be able to work again," Storey said. "Every day, even when he could barely function and showed no real signs of improvement or being able to go home, he begged us to let him go to work. He was sad and depressed and missing the routine that work had always brought to his life."

Bock and the Capitol Projects staff decided to send some "work" to Schaefer while he was in the hospital to lift his spirits and give him something to do.

"It simulated the decollation job that he always worked on for Scholastic," Bock said. "Rita let him work on a few of the book sets but didn't want him to overdo and get too tired. That night, much to her surprise, when she came back to check on him, she noticed the entire 'job' had been completed and was sitting by the door."

When Storey asked Schaefer about it, he told her the workshop needed him to finish his work and needed him back at his job.

"After that, Ronnie began improving," Storey added. "Knowing that he had friends and coworkers that missed him and needed him was just the dose of medicine he needed at that point."
State News:
Arizona - They Made a Revolutionary System to Protect People With Developmental Disabilities. Now It’s Falling Apart.
By Amy Silverman, ProPublica and Arizona Daily Star, December 12, 2020
More than 40 years ago, Arizona set up a revolutionary system to protect the safety of residents with developmental disabilities like Down syndrome, autism and cerebral palsy.

The state created panels of volunteers — family members, nurses, disability advocates — in different regions to oversee the agency charged with the care of those with developmental disabilities.

The volunteers visited group homes, advocated for new programs and reviewed reports of possible abuse. They helped Arizona earn its reputation as one of the best states in the country for the care of people with developmental and intellectual disabilities.

But today, the Independent Oversight Committees are falling apart, with members accusing the state Division of Developmental Disabilities, or DDD, of neglecting to provide the information and resources they need to do their job, according to interviews, official documents and a review of confidential incident reports by the Arizona Daily Star and ProPublica.
Four committee members — including several long-serving leaders — have resigned during the past year. Several others interviewed by the news organizations report they are considering doing so. Some of the panels are barely functioning because not enough people show up for meetings.

Nearly all of the 20 committee members interviewed — a group that includes representatives from each of the state’s six regional committees — expressed frustration with the agency. They said that DDD officials do not regularly attend meetings to answer questions.

Abuse reports arrive months or even years after the incidents occurred, preventing timely interventions. Suggestions for improvements are ignored.

The new findings follow an investigation by the news organizations this year that found that DDD was failing some of the state’s most vulnerable residents as a result of budget cuts, poor management and leadership turnover.
New Jersey - Her Disabled Son Died Alone in a Group Home Closet. Now N.J. May Require Group Homes to Install Cameras
By Susan K Livio, NJ Advance Media, December 14, 2020

William Cray was found dead on the floor of his bedroom closet in a group home in Somers Point three years ago.

His mother said she’ll never know what happened to her son, a 33-year-old man with developmental disabilities. The autopsy said he died of natural causes. The operators of the state-licensed group home, Devereux Advanced Behavioral Health, didn’t say much, although she had been at odds with them in recent months over Billy’s unexplained bruises and other injuries.

Martha Cray asked a state Assembly panel Thursday to spare other families this fear and uncertainty by supporting legislation that would require the installation of security cameras if residents or their guardians give consent. She noted her son had suffered abuse in other licensed facilities, and when she complained and demanded an investigation, the claims were always “unsubstantiated.”

“What exactly is the purpose of having a Department of Health and (a Department of) Human Services if they don’t oversee these facilities and hold them accountable?” she said.

Following an emotional three-hour hearing, the Assembly Human Services Committee agreed and voted 6-0 to pass the bill (A4013).

The bill requires the group home to retain the video recordings for 90 days, and the state Department of Human Services to list the names of group homes that have cameras on the state website. The bill, which was amended before the vote, makes clear the cameras would be installed in common areas — including back yards and doorways — and only if all of the residents agree they want them.
Florida Dropped its Probe of a Troubled Group Home. Then a Man Died at its Sister Facility
By Carol Marbin Miller, Ben Conarck, and
Daniel Chang, Miami Herald December 15, 2020
State disability administrators were so concerned for the safety of residents at an Orange County group home that they filed a complaint in March, alleging the home’s staff improperly restrained a resident, and then it lied about what happened.

The resident at the center of the complaint could hardly have been more high-profile: In 2016, video of a North Miami police sniper shooting at the man, Arnaldo Rios-Soto, was broadcast around the world. Rios-Soto’s caregiver was shot in the leg as he raised his hands in surrender.

State disability administrators took uncharacteristically strong action in the more recent case. They asked a judge to shut down the Beechdale Group Home, owned by a chain called Crystal Lakes Supportive Environments.

But without explanation, the Agency for Persons with Disabilities withdrew the complaint against Beechdale on Nov. 20. The home, and its owner, suffered no discipline.
Five days later, a resident at a sister facility, Oconee Group Home, was dead — the victim, his family says, of the same type of restraint that was used on Rios-Soto.

“We were assured he would be safe,” said Sarah Walker, the mother of Caleb Walker, who died Nov. 25. “There’s nothing that will bring him back, but I believe that they all deserve better.”

“What we ultimately want is justice for Caleb and that those who were responsible in any way be held accountable,” she added. “This is the last thing we can do for him. He mattered and made a difference in people’s lives.”

Lake County Sheriff’s Sgt. Fred Jones said his department could not discuss Walker’s death, which is the subject of an ongoing investigation.
Shopping for the Holidays 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.com 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 Bookmark Toolbar, so that every time you go to Amazon, you go through the SMILE portal.
National News:
New Drug Moves Closer to Becoming First Treatment for Fragile X Syndrome
By Marcene Robinson, University of Buffalo, December 15, 2020

A new drug discovered through a research collaboration between UB and Tetra Therapeutics has taken a major step toward becoming a first-in-class treatment for Fragile X Syndrome, a leading genetic cause of autism.

The drug, BPN14770, achieved positive topline results in a phase 2 clinical study. The innovative treatment improved cognitive function in adult male patients with Fragile X Syndrome.

Fragile X Syndrome, a genetic disorder for which there is no cure, is the most commonly known cause of inherited intellectual disability, according to the Centers for Disease Control and Prevention.

“We are very excited about the results of this study,” says Mark Gurney, founder and chief executive officer of Tetra Therapeutics. “In addition to being safe and well tolerated, treatment with BPN14770 led to significant cognitive improvement, specifically in the language domains, and we also saw a clinically meaningful benefit in overall daily functioning. These findings validate our approach to treating this disease through a mechanism that addresses a core deficit in the disorder.”
HHS Expands Access to COVID-19 Countermeasures in PREP Act Declaration
By Laura French, EMS1, December 4, 2020

The new amendment to the Public Readiness and Emergency Preparedness Act declaration aims to open more pathways for telehealth use and distribution of the COVID-19 vaccine.

The Department of Health and Human Services (HHS) has issued an amendment to the 2020 Public Readiness and Emergency Preparedness Act (PREP Act) declaration to increase access to COVID-19 countermeasures.

The amendment, issued Thursday, is the fourth amendment to the declaration, which provides immunity from liability for providers administering certain countermeasures during the COVID-19 pandemic.


Read the full amendment on the HHS Public Health Emergency website.
HHS Recognizes Key Role of Telehealth in Amended PREP Act Declaration
By Vrushab Gowda, Harvard Law Bill of Health, December 14, 2020
On December 3rd, the Department of Health and Human Services (HHS) extended its provisions to cover telehealth services in amending its Declaration Under the Public Readiness and Emergency Preparedness Act (PREP Act) for Medical Countermeasures Against COVID–19.

This represents the first time HHS has covered telehealth services under the authority of the PREP Act. Telehealth providers are now permitted to deliver a range of COVID-related care across the country, including states in which they do not hold professional licenses. The Declaration, moreover, offers them expansive liability protection, effectively immunizing them against a host of claims in connection to their administration of designated countermeasures.
Direct Support Professionals:
Pandemic Helpline For Caregivers of People With IDD

As the COVID-19 pandemic wears on, a new 24-hour support line is working to help individuals with developmental disabilities and those who care for them cope during this tough time.

Known as Project Connect, the telehealth line is free and available anytime for people with disabilities, their families, caregivers and other members of their support teams across the nation.

Project Connect is available by calling 888-847-3209.
VOR Bill Watch:
Click on blue link to view information about the bill

VOR SUPPORTS:

H.R. 6045 & S. 3669 - 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. 5443 & S. 3220 - Ensuring Access to Direct Support Professionals Act -
To amend title XIX of the Social Security Act to clarify that the provision of home and community-based services is not prohibited in an acute care hospital, and for other purposes.

H.R. 2417 - 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).


VOR OPPOSES:

H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 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. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.
VOR ❤️ 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?

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