October 23, 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!

The days are growing shorter; the leaves changing color; the temperature dropping,
It's time we start gathering our acorns and storing them for the months ahead.
Every Member GIVE A Member!

A one-year membership is only $45. It's a great way to give to someone in your family and also give to our VOR Family.
So give a little. To someone you love, for someone you love.
Spotlight: Why Murray Center?
Why Murray Center?
The Murray Parents Association has been releasing a series of five videos featuring families explaining why Murray Center and Intermediate Care Facilities can offer care and benefits not available in other settings. ***** Highly Recommended!
Three of the families of Murray Center Residents tell their personal stories and show how Murray Center has helped people with Intellectual and Developmental Disabilities of all ages.
In the first video, Peggy strong describes Marjorie's journey, and how Murray Center has changed her life and given her freedom that she had never had in group home settings.
In the third video, Rita Hicks shares about how Murray Center has given a new life and new possibilities to her friend Renee Sharp.
In the second video, the Duecker family speaks about how important the Murray Center has been in supporting their son with severe autism and helping him to control his behaviors.
This incredibly moving video shows the difference that just one year at the Murray Center has made in the lives of Lori Feldt and her son Max.
National News:
Note: VOR strongly disagrees with the position taken by the National Council on Disabilities in the article below. We print this only in the interest of making sure our members understand that the agencies that claim to speak for us don't speak for all of us, and that their policies are often detrimental to those most severely impacted by Intellectual and Developmental Disabilities. Mr. Romano again shows his belief that all disabilities can be viewed through one lens, and that what is best for someone who has one disability is therefore appropriate for any person with any disability.

Federal Agency Recommends Ending Government Disability Jobs Program
By Michelle Diament, Disability Scoop, October 19, 2020

An independent federal agency says it’s time for a decades-old government jobs program for people with disabilities to come to an end.

The National Council on Disability, which is charged with advising the president and Congress on disability issues, is calling for the AbilityOne Program to be phased out.

The 82-year-old program funnels government contracts to a network of 500 nonprofits across the nation that make products or provide services to federal agencies. At least 75% of the direct labor hours undertaken by the nonprofits must be performed by people who are blind or who have significant disabilities.

However, in a report out this month, the National Council on Disability said the program is antiquated and is failing to increase employment opportunities for people with disabilities.

“The AbilityOne Program is a federally sanctioned segregated jobs system,” said Neil Romano, chairman of the council. “Not only is its effectiveness in question based on our research, it is a policy relic in tension with current national disability policy.”
Editorial:
Several members have requested that we share the following blog post by Dr. Lee Wachtel of the Kennedy Krieger Institute, which was published on the National Council on Severe Autism's web site.

Death by Severe Autism
By Lee E. Wachtel, M.D., NCSA, October 19, 2020

With the presidential election only two weeks away, our country stands at a tremendous crossroads during an era of unprecedented health and social challenge. Our lives literally seem at stake. As Republicans and Democrats spar on hotly contested issues ranging from Covid-19 to racial and social equity, climate change and the Supreme Court, disability activists are also jockeying for power and planning their next steps in whatever administration the American people elect. 

I had been quite excited to participate in some of these political advocacy initiatives, until I was upbraided and accused of “ableism” and hurting others’ feelings when I asked what plans might include those with severe autism and intellectual disability. I was informed that “severe” was an unacceptable term, and as discussion of this topic was deeply upsetting to some individuals, I would be dismissed from the committee if I mentioned it again. 

Let's be clear. There is obviously, without any doubt, such a thing as severe autism. The tragic death of autism advocate Feda Almaliti and her autistic 15-year-old son Muhammed (often called “Mu” or “Hammoudeh”) in a house fire in the early hours of September 26 underscores this reality, and also just how critical it is to never back down. We must never allow the plight of children and families dealing with severe autism to be suppressed by advocates who actively seek to downplay the serious mental challenges that ended up killing both Mu and his mother.

Feda, her sister Maysoon and Maysoon's daughter safely exited the burning home, but Feda ran back inside and upstairs to save Mu.

After a colleague and autism parent commented that “Autism killed Feda and Mu,” I had the chilling recognition that these two incredible people died a horrific death precisely because a severely autistic and intellectually disabled kid was unable to transition from point A to point B.
State News:
Missouri - Centers Face Likely Budget Challenges
By Rudi Keller, Missouri Independent, via The Examiner, October 21, 2020

When a drug store customer selects a promotional package offering a free toothbrush with a new tube of toothpaste or two extra razors in a bag of shavers, there's a good chance the sale display was assembled in a sheltered workshop.

Located throughout the state, the 87 workshops employ around 5,600 people with a developmental or other disability that makes them unable to work in competitive employment.

Workshop budgets rely on payments from client industries, local property tax funds and annual appropriations of state general revenue.

The last time the state boosted funding for the program was 2016, when lawmakers approved an $800,000 bump to $26 million. Funds are distributed monthly to workshops based on the hours employees spend working and training.

"As a general rule, some of our more rural shops, that have less industry in their immediate vicinity, are much more reliant on state funding," said Kit Brewer, executive director of Project CU in St. Louis and legislative chair of the Missouri Association of Sheltered Workshop Managers. "It is crucial to all of us, but it is more so to those shops."

When the COVID-19 recession hit, state revenues plummeted. As the shortfall grew in magnitude, Gov. Mike Parson cut $430 million from the $10.2 billion fiscal year 2020 general fund budget.

The cuts targeted both large and small spending items, ranging from $75,000 for epilepsy education to $139.2 million from the $3.2 billion in general revenue set aside for K-12 education.
The sheltered workshops lost $2 million – their entire June payment.
Kentucky - ‘Constant Stress and Worry’ Program for People with Disabilities on Brink of Collapse
By Beth Musgrave, Lexington Herald-Leader,
October 12, 2020
Before the pandemic, Fresh Approach had between 25 and 30 adults with intellectual and developmental disabilities at its adult day training program in Lexington.

The number of adults coming to the program has dwindled to eight on most days.

Lexington-based Employment Solutions operates several day training programs, including Fresh Approach. Prior to the coronavirus outbreak in March, it had 150 participants. Now it has just a quarter of that — roughly 40 to 50 participants.

“When your business model is predicated on Medicaid funding and people cannot attend, obviously it affects your profitability, and as with
any business, in order to continue to provide services, we have to have a funding source,” said Walter Barbour, director of Fresh Approach.

Most day training programs, which can provide exercise and arts classes, other activities and jobs to people with disabilities, are struggling across the state. Those programs closed from March until late June. When day training programs were allowed to reopen this summer, the number of participants plummeted. Many, like Fresh Approach, have had less than a third of their clients return.
Texas - State Allows Social Workers To Refuse Clients With Disabilities
by Paul Cobler, The Dallas Morning News via Disability Scoop, October 20, 2020

Gov. Greg Abbott’s office and a state regulatory board that oversees social work are facing backlash from social workers, state lawmakers and advocacy groups after the board stripped protections for LGBTQ people and people with disabilities in the social work code of conduct on last week after the governor’s office recommended it.

The Texas State Board of Social Work Examiners approved the decision unanimously during a joint meeting with the Texas Behavioral Health Executive Council, which oversees the social work board. The decision strikes disability, sexual orientation or gender identity from the nondiscrimination clause of the code of conduct.
Florida - Pinellas Group Home Workers Terrorized, Restrained Disabled Boy, Lawsuit Says
By Christopher O'Donnell, Tampa Bay Times, October 15, 2020
Caregivers at The Ranch, a residential group home for children with physical and developmental disabilities, sometimes had trouble getting one boy to go to bed.

So one of them would dress as the “bogeyman” to try and scare him to bed, according to a lawsuit filed in Pinellas County against The Arc Tampa Bay, a nonprofit group that runs the home. Other staff repeatedly warned the boy the bogeyman would attack him if he didn’t comply, the lawsuit states. A video of one interaction was taken and shared by one staffer.

Caregivers also used “bizarre and traumatizing disciplinary methods” including tying the boy’s
hands, the lawsuit alleges. It does not give his name or age but states that he has suffered from night terrors and anxiety.

The Arc’s executive director, Brian Siracusa, declined to comment on specific allegations, but acknowledged that five members of staff were suspended and then fired after the Florida Department of Children and Families conducted an investigation into allegations that a child was mistreated. No criminal charges were brought against the employees, he said.
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.

OF CONCERN:

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.

TELEHEALTH:

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.
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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