November 13, 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
VOR & You:
VOR's Fall Membership & Fundraising Campaign!

It is the season of giving. We give thanks, we give gifts, we give or ourselves.

Won't you help us to provide our gift to those who need it most?

There are many ways to give.
Click on the links below for details.

National News:
Developmental Disorders Top the Medical Conditions That Heighten the Risk of Dying from Covid-19
By Robin Gelburd, STAT, November 11, 2020
Some underlying medical conditions put Covid-19 patients at higher risk of severe outcomes, including death. But much remains unknown about exactly which conditions are involved and how much they increase risk.

To explore the connections between underlying conditions and Covid-19, my organization, FAIR Health, collaborated with the West Health Institute and surgeon Marty Makary of the Johns Hopkins University School of Medicine. Our study, published on Wednesday, sheds some light on the subject.
Using FAIR Health’s vast database of private health care claims, we studied 467,773 patients diagnosed with Covid-19 from April 1 through Aug. 31, looking for the risk factors that increased their odds of dying from Covid-19. Our goal was to inform public health policy, particularly protocols for distributing first-line vaccines or therapeutics.

Caregivers of Those with Mental Health or Developmental Disabilities Have New Support Group
News Press Now, November 6, 2020
A new virtual NAMI Family Support Group is being formed to provide support for families with loved ones with mental health conditions and Developmental Disabilities/Intellectual Disabilities (DD/ID). This group will meet the second Wednesday of each month from 6:30 to 8 p.m. via Zoom beginning Jan. 13, 2021.

Signup is open now.

This is a free, peer-led support group for family members, caregivers and friends of loved ones living with mental health conditions and developmental disabilities/intellectual disabilities. Attendees gain insight from the challenges and successes of others facing similar circumstances.

NAMI’s support groups are unique because they follow a structured model, a press release states, ensuring everyone in the group has an opportunity to be heard and to get what they need.

By sharing experiences in a safe and confidential setting, individuals gain hope and develop supportive relationships, the release states. This group provides an opportunity for personal needs to be met. It encourages empathy, productive discussion and a sense of community. Benefits include identifying local resources and learning how to use them.
NAMI Family Support Group aims to help individuals do the following:

  • See the individual first, not the illness
  • Recognize that mental illnesses are medical illnesses that may have environmental triggers
  • Understand that mental illnesses are traumatic events
  • Aim for better coping skills
  • Find strength in sharing experiences
  • Reject stigma and not tolerate discrimination
  • Not judge anyone’s pain
  • Forgive ourselves and reject guilt
  • Embrace humor as healthy
  • Accept that we cannot solve every problem
  • Work for a better future in a realistic way

For more information or to sign up, contact

Coming Next Week: The Early Bird Special!
Nice Story of the Week:
A 21-year-old Man has Made History as the First Person with Down Syndrome to Complete an Ironman Triathlon
By Kelsie Smith, CNN, November 10, 2020
Special Olympics athlete Chris Nikic crossed the finish line on Saturday to become the first person with Down syndrome to complete an Ironman triathlon.

Guiness World Records recognized Nikic's achievement after he finished a 2.4-mile swim, a 112-mile bike ride and a 26.2-marathon run at the Ironman Florida competition in Panama City Beach.

"Ironman. Goal set and achieve," said Nikic in a post to Instagram. "Time to set a new and Bigger Goal for 2021."

Nikic completed the race in 16 hours 46 minutes and 9 seconds -- 14 minutes under the 17-hour cutoff time.

Nikic and his father Nik developed the "1 percent better challenge" to stay motivated during training.
The idea is to promote Down syndrome awareness while achieving 1% improvement each day, according to Nikic's website.

"To Chris, this race was more than just a finish line and celebration of victory," Nik Nikic said. "Ironman has served as his platform to become one step closer to his goal of living a life of inclusion and leadership."

Nikic's accomplishment earned him congratulatory messages from celebrities, such as tennis great Billie Jean King and runner Kara Goucher, and people around the world, including 33,000 new followers on social media, according to Nikic.

State News:
Texas - First Lady Cecilia Abbott, OneStar Foundation Announce 2020 Governor’s Volunteer Awards Recipients
STL News, November 6, 2020
Texas First Lady Cecilia Abbott, Honorary Chair of the 2020 Governor’s Volunteer Awards, today announced the recipients of the 37th annual Governor’s Volunteer Awards. These awards — presented in conjunction with OneStar Foundation — honor the exemplary service of individuals, groups, and organizations that have made a significant and measurable contribution to Texas communities through service and volunteering in the past year.

“The irrepressible spirit of service shines brightly in Texas,” the First Lady said. “I am honored to celebrate the extraordinary generosity of these 12 outstanding awardees, who have found selfless and compassionate solutions to strengthen their communities.”

The recipients of the 2020 Governor’s Volunteer Awards include:

Governor’s Lone Star Achievement Award: Bill Gilliland (Abilene):

Since 1990, Bill Gilliland has devoted himself to making “Christmas Lane” at the Abilene State Supported Living Center the region’s essential holiday destination. 2019 marked the 30th anniversary of this beloved seasonal tradition, which features more than 100 festive displays and hosts thousands of guests from across the region. The community extravaganza generates free-will donations from guests for the state-supported living center, which provides direct services and assistance to people with intellectual and developmental disabilities. Bill devotes more than 500 hours in service each year to coordinating Christmas Lane, and he has been instrumental in various fundraising events that have raised more than $650,000 in medical upgrades for the center.

California - How Families Are Fighting Racism And Disability Discrimination
By Claudia Boyd-Barrett, California Health Report via Disability Scoop, November 9, 2020
Ever since her son, Landon, was born three years ago, Nakenya Allen has been fighting.Fighting to get a diagnosis for the cause of Landon’s digestive problems, which landed him in the emergency room multiple times before he turned 18 months old. Fighting to get doctors to take her concerns about her son’s constant distress seriously. And, after he was diagnosed with a rare birth defect in his spinal cord, fighting with medical and disability service providers to get financial support for his care.

“I didn’t feel like I was being heard,” said Allen, 42, who is Black and lives in Martinez, in the Bay Area. “At the time, did I consider it a racist issue? I don’t think so because I was so serious about trying to help my son.

“I just knew that they weren’t helping us, and I was desperate. But looking back on that now, I do feel like there was a bias.”

Many parents of children with special health care needs — regardless of race — report struggling to receive prompt diagnoses and access to adequate therapy and support services. But for families of color, particularly those who are Black and Latinx, the struggle is more acute.
These families often grapple with biased attitudes from medical, service and education providers. Sometimes the bias is unconscious, but the net result is the same — poorer care than white families typically receive. Health systems also don’t often account for the impact of institutionalized racism on people of color — such as higher poverty rates, less access to jobs with flexible and paid time off to care for kids, and greater transportation challenges — and that lack of awareness can often exacerbate the inequities. Cultural and language barriers can make it hard for these parents to navigate California’s labyrinthine system for children with disabilities, advocates said.

“There’s just a lot of systemic racism,” said Kausha King, director of the Community Empowerment Project, a program that provides navigation support and training to Black families of children with special needs in Alameda and Contra Costa counties. “Systems are not technically set up to serve our families, and there are more and more Black families that are in need of these systems.”

New Jersey - Disability Leaders Condemn NJ's Handling of COVID, Worry About 2nd Wave
By Gene Myers, NorthJersey com, November 13, 2020
New Jersey residents with disabilities and their advocates are angry with the state and how it failed their high-risk community during the pandemic, shows a new report.

The report outlines 23 ways in which the state failed to protect the disabled community during the crisis.

People with disabilities, which make up 24% of the state's population according to the CDC, were left aside and outside of the planning process because of a lack of understanding of the community, how they live and the help they needed, the report states.

"More than ever, this pandemic has focused a spotlight on the marginalization of the voices, needs, and rights of people with disabilities not just in New Jersey but nationwide. Additionally, the
rights of parents of individuals with disabilities have been abrogated, and their voices are silenced by medical and political leaders," states the report.

While the report "takes a broad look at the state’s systems and functions and how they impact people with disabilities, their families, and service provider networks," some things need to be fixed “immediately” as COVID-19 sweeps back into the spotlight with cases rising again, said Javier Robles, a Rutgers University professor and organizer of the New Jersey Disabilities COVID-19 Action Committee, which prepared the report.
Fixing discriminatory hospital policies and a need for protective gear are the most pressing issues, said Robles.

Massachusetts - DDS Seeks to Remove Mother as Co-Guardian of Her Son After She Saves His Life
By Dave Kassel, The COFAR Blog, November 12, 2020

Cindy Alemesis’ son, Nicholas, nearly died in December 2018 after staff in his group home in Dracut failed to take him for a scheduled morning ultrasound appointment, which would have shown that his brain shunt was leaking spinal fluid.

Just hours after the scheduled time for the appointment, Cindy first noticed how ill Nick appeared.

Cindy was with Nick following an evening church service, and made sure he was taken to a hospital. There, doctors found that the shunt was leaking spinal fluid into his body, and that the fluid had begun to build up in his stomach. Cindy didn’t know at the time that the ultrasound appointment had been missed.
Nick got sepsis from the leaked fluid, and was in Mass. General Hospital for eight months, during which he underwent multiple brain operations and other procedures. Cindy was at his bedside for much of that time.

Nick, who is 28, has a mild intellectual disability, and was born with hydrocephalus, a condition in which there is excess spinal fluid in his brain. He has a shunt in his brain that drains the fluid.

Since Nick’s recovery and release from the hospital in July 2019, Cindy has regularly complained that staff in the group home, run by LifeLinks, a provider to the Department of Developmental Services (DDS), have continued to miss medical and dental appointments for him.

But rather than addressing those concerns, DDS is now moving to remove Cindy as her son’s co-guardian, stating only in a court document filed last month that she has made decisions that were not in Nick’s best interest. The DDS filing in Middlesex Probate Court does not provide any specifics as to what decisions those might have been.

Cindy said DDS has done little or nothing to address the concerns she has raised about Nick’s care in the group home. She said problems, in addition to the missed appointments, include sharp restrictions placed on her contact with Nick for reasons that have not been explained to her.

VOR Bill Watch:
Click on blue link to view information about the bill


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).


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 is concerned about the following bills because they only cover HCBS proivders, and because the sponsors of the bills have consistently fought against ICFs as part of the continuum of care in I/DD services.

H,R. 6305 & S. 3544 - Coronavirus Relief for Seniors and People with Disabilities Act of 2020 - Bill provides FY2020 supplemental appropriations to the Centers for Medicare & Medicaid Services for specified quality improvement and laboratory certification activities. The funds are designated as an emergency requirement, which exempts the funds from discretionary spending limits and other budget enforcement rules.
In addition, the bill (1) temporarily requires state Medicaid programs to provide Medicare cost-sharing assistance to certain individuals who qualify for, or are enrolled in, the low-income subsidy program under the Medicare prescription drug benefit; and (2) authorizes a grant program to support Medicaid home- and community-based services during the public health emergency.


During the COVID-19 Pandemic, Health Care Providers have been relying increasingly on Telehealth Services. Members of Congress have proposed a number of bills to learn more about telehealth services, with a possible eye toward expanding these services into our broader system of health care.

VOR has been following the expansion of telehealth, especially how incorporating these services into treatment of people with I/DD might change our delivery systems. Telehealth has the potential to improve care for some people with poor access to professional care, or it could be used as a less-expensive substitute for in-person treatment and quality professional care.

Current Telehealth bills in the 116th Congress include:

H.R. 6474 - Healthcare Broadband Expansion During COVID-19 Act - To provide for the expansion of the Rural Health Care Program of the Federal Communications Commission in response to COVID–19, and for other purposes.

H.R. 7078 - To study the effects of changes to telehealth under the Medicare and Medicaid programs during the COVID-19 emergency.

S. 3999 - A bill to amend title XVIII of the Social Security Act to simplify payments for telehealth services furnished by Federally qualified health centers or rural health clinics under the Medicare program, and for other purposes.

S. 3999 - A bill to amend title XVIII of the Social Security Act to ensure access to mental health and behavioral health services furnished through telehealth under the Medicare program.

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.

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