April 23, 2021
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 Comments on Proposed
HCBS Access Act of 2021

VOR has submitted a response to the draft version of the HCBS Access Act of 2021 as proposed by Rep. Debbie Dingell (D-MI), Sen. Bob Casey (D-PA), Sen. Maggie Hassan (D-NH), and Sen. Sherrod Brown (D-OH).

While we support the end of waiting lists and better pay and training for Direct Support Professionals, we believe that provisions in this bill would lead to the elimination of Intermediate Care Facilities (ICFs). The bill would require the federal government to fund 100% of HCBS waiver services, while only providing 50% of the funding for non-waiver services like ICFs, disincentivizing states from supporting this level of care.

Eliminating ICFs has long been a goal of several large advocacy organizations, and they are lobbying hard to enact these measures. It's time we fight back.

Comments are due by April 26, and can be sent to [email protected]
Time Is Running Out - Register Now!

VOR's 2021 Legislative Initiative
Your moment to
Speak Truth to Power!

VOR's Legislative Initiative Is Online This Year

Legislative Briefing - Sunday, May 16 - 4:00 pm, Eastern
Virtual Hill Visits - May 17 - 20
Online Debriefing Sessions - May 17 & 18 6:30 - 8:00 pm Eastern

Due to the pandemic, there will be no in-person meetings with Members and Congress or their staff on the Hill. We are encouraging our members to coordinate with others in their state to arrange meetings via Zoom, WebEx, Skype, FaceTime, or conference calls. We will provide the contact lists and let you know who in your state is participating. It will be up to you to coordinate with them and arrange your virtual meetings.

Part One: The Legislative Briefing
Sunday, May 16: 4-6 pm Eastern, 3-5 pm Central, 2-3 pm Mountain, 1-3 pm Pacific

The Sunday Briefing will explain in depth the issues that we wish to bring before our legislators this year. It will be followed by a Q&A, giving participants the opportunity to better understand our key points.

Part Two: Virtual Hill Visits
Monday - Thursday, May 17 - 20 - Virtual Meetings with Congressional Offices
We will try to make our presence known by concentrating our virtual meetings into a shortened time frame, much like during our in-person initiatives in the past when VOR members were meeting in offices in all six of the Legislative Office Buildings. If at all possible, please try to schedule meetings in the days that follow the Sunday Briefing.

Online Debriefing Sessions
Monday, May 17 & Tuesday, May 18  6:30 - 8:00 pm Eastern
There will be two online de-briefing sessions after each of the first two days’ meetings, to provide Q&A to help answer any questions that may have arisen and to help members follow up with anything that arises during their Hill visits.
You must be a current member of VOR to participate in this event, as the meetings with legislators and their aids will be conducted under the auspices of VOR.
National News:
The Terrible Toll of COVID-19 on People with Intellectual Disabilities
By Wendy Ross, MD, AAMC, April 20, 2021
Patients with intellectual disabilities are six times more likely to die from COVID-19 than other people. An expert weighs in on how we must improve their care both during the pandemic and down the road.

Approximately 6.5 million people in the United States have an intellectual disability. That means they have an IQ score below 70 and other cognitive limitations that affect their communication, social, and self-care skills. COVID-19 has certainly complicated their existence — but it also has ended their lives at tragic rates.

Consider this disturbing statistic: Having an intellectual disability was the highest independent risk factor for contracting COVID-19, controlling for race, ethnicity, and other variables. It was higher even than age or heart or lung problems, according to a recent paper I co-authored. Also, having an intellectual disability was second only to age for COVID-19-related deaths. The paper — which reported on more than 64 million patients at hundreds of U.S. medical centers — found that those with intellectual disabilities were six times more likely to die from COVID-19 than other members of the population.

Some of the increased illness and death may be related to the nature of intellectual disabilities and the supports they entail.
For example, people with intellectual disabilities more often live in group homes; use shared transportation; are exposed to people outside their households, including therapists and other providers; and struggle with precautions like mask-wearing.

But there are aspects of these uneven outcomes that raise serious questions about us as a medical community and as a society.

People with intellectual disabilities — in fact, people with any disability — have long suffered in the world of medicine. In a survey published in February, for example, only 41% of physicians felt very confident about their ability to provide the same quality of care to patients with disabilities.

When it comes to treating patients with intellectual disabilities, physicians often prefer to speak with their caregivers despite possible concerns over patient consent. And individuals from racial and ethnic minority groups with these disabilities often face additional obstacles: For example, Latino and Black adults with intellectual and developmental disabilities had worse outcomes than their White peers in several health domains.

New Report Offers Guidance for Pediatricians on How to Prevent Abuse of Children with Disabilities
By Rebecca Sohn, STAT, April 19, 2021
Children with disabilities are at least three times more likely to experience abuse and neglect compared to their peers, and a new American Academy of Pediatrics report underscores the role of pediatricians in preventing maltreatment and offers guidance on how they can support families.

“I’m always struck by the numbers of kids that are abused, and how prevalent abuse [is] in the population of children with disabilities,” said Lori Legano, the director of Child Protection Services at NYU Langone Health’s department of pediatrics and the lead author of the report, which was published Monday in Pediatrics. 

Legano said the report, which is an update to a 2007 AAP paper, allows busy pediatricians, especially those without specific expertise on child maltreatment or disability, to be more aware of the increasingly well-documented issue and approach it in an informed and sensitive way. The report looked broadly at disability in children and adolescents as “any significant impairment in any area of motor, sensory, social, communicative, cognitive, or emotional functioning.”
The majority of child maltreatment is neglect, and it is even more prevalent among children with disabilities, the report states. Children with less severe conditions, such as some intellectual and learning disabilities, may be at an even greater risk for abuse.

“It could be that if they have a less severe disability, the parent might not have accurate expectations of what they can do,” Legano said. For instance, a child may not follow directions or respond to discipline the way a parent expects, leading to frustration. 

The report also details associations that studies have found between certain disabilities and abuse: Children with mild cognitive impairment may be at an increased risk for physical abuse, while children with psychological or speech disorders might be at greater risk of emotional abuse. Nonverbal children and children with hearing loss may be at a greater risk for sexual abuse.

April is Autism Awareness Month
VOR's Virtual Annual Meeting

Sunday, June 6, 2021 on Zoom

Details To Be Announced
State News:
Massachusetts - COFAR Blog - Congress Still Trying to Eliminate Congregate Care for Developmentally Disabled
By Dave Kassel, COFAR Blog, April 19, 2021

In their latest attempt to do away with congregate care for persons with intellectual and developmental disabilities and promote further privatization of services, lawmakers in Washington have proposed the Home and Community Based Services Access Act (HCBS Access Act)
While we support the intent of this legislation to eliminate waiting lists for disability services, the bill’s provisions are heavily biased against congregate care facilities such as the Wrentham Developmental Center and the Hogan Regional Center in Massachusetts. The bill is also biased against sheltered workshops and other programs for people who are unable to handle mainstream or community-based settings.
In that regard, this legislation is similar to the federal Disability Integration Act of 2019, which ultimately did not pass in the previous congressional session.

While we think it was good news that the Disability Integration Act didn’t pass, the bad news is that many in Congress, including most, if not all, of the Massachusetts delegation, appear to subscribe to the notion that community-based or privatized care is the only appropriate option for people with cognitive disabilities. 

Every member of the Massachusetts delegation signed on to the Disability Integration Act, which would have encouraged further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country. The HCBS Access Act would do so as well.

W.Va. Gov. Signs Bill to Require Training of Officers Responding to Those With Autism
By Tori Yorgey, WSAZ-3 News, April 22, 2021
Several bills got the approval signature of West Virginia Gov. Jim Justice during a virtual ceremony Wednesday. One of them will require training for certain officers who are responding to those with disabilities.

“I just thought it was a step in the right direction with people with disabilities, specifically autism, that can help the communities and families have a little bit of relief as far as what might happen if they get into an emergency situation or they need assistance with their loved one,” Phenia Simmons, who has two sons that are on the autistic spectrum said.

The bill requires law enforcement and correctional officers to be trained on the best ways to interact with those with autism spectrum disorders.

“Some individuals with autism are non-verbal so there will probably be extensive training, I would hope, for those officers that would be visual,” Simmons said.
“They use a lot of visual images and things to communicate with people with autism because, some of them never can speak but they certainly have things going on in their brain and receive information but they’re not always (able to) express it.”

Steve Slack also has two children with autism and trains police officers around the country on how to deal with people with intellectual and developmental disabilities.

“According to the Ruderman Family Foundation, 50 percent of people that are killed during encounters with police, have a disability. Unfortunately, many of them are not violent, they aren’t armed, there’s (just) a communication difference.”

New Jersey - Day Programs for People with Intellectual and Developmental Disabilities can Reopen
By Briana Vannozzi, NJ Spotlight News, April 22, 2021

The state Department of Human Services released updated reopening requirements for congregant day programs for individuals with intellectual and developmental disabilities. After an outcry by many families, facilities will now have to follow capacity limits tied to the COVID-19 Activity Level Index for their region, also known as CALI.

Based on current CALI scores, programs across the state could open at 50% capacity. The guidance applies to all day programs funded by the Division of Developmental Disabilities. If a provider chooses to reopen in what CALI considers a Very High, High or Moderate region, participants must be notified and made aware of the increased risk of virus transmission.

The programs have remained shut since last March.

Kansas - Disabled Hays Woman waits Decade for Services; Kansas Wait List over 4,500
By Cristina Janney, Hays Post, April 22, 2021
9-year-old Bonnie of Hays has waited 10 years for a placement in a residential home with others with intellectual disabilities.

She waited until a crisis finally allowed her to qualify for a placement in a group home.

An online predator lured her into her confidence and was close to having her disability benefits transferred into his name before Bonnie's guardian, her aunt Barb Sherfick, was able to stop him.

Bonnie is living in an apartment owned by a family member, but Sherfick said she needs more support and guidance. This is the second time Bonnie, who has the mental capacity of about a 10-year-old, has been the victim of an online predator.

Sherfick said she hopes her niece's upcoming placement will open up her world to appropriate friendships, opportunities to be more active in the community and maybe even a job.

She said, sadly, it has just been a long time to wait.

"We are praying that she is placed in Hays or Great Bend, so we can visit and be close, but there are no guarantees," Sherfick said. "They need more facilities in the state and more funding of these people."

Bonnie's situation is common in Kansas. As of the beginning of April, more than 4,500 people with intellectual and developmental disabilities are on a waiting list to receive state-funded services in Kansas, said Jerry Michaud, president/CEO of the Developmental Services of Northwest Kansas.
The state is currently serving people who entered the list as of Nov. 2, 2011.

Unfortunately, many people who are on the waiting list end up in a crisis situation, such as Bonnie, before the state will take them off the waiting list, Michaud said.

Texas - One Reported Dead after 25 People Removed from Unlicensed Rosenberg Group Home
By Stefania Okolie, ABC-13 News, April 18, 2021
(Update from last week's newsletter)

Police are taking a closer look inside of an unlicensed group home after one patient was reported dead on Saturday, just a week after authorities raided the facility and found more than two dozen people inside.

Authorities reportedly returned to the home at 10:56 a.m. to see what essential items that the remaining occupants needed when they ended up finding a deceased patient.

"I feel like this is inevitable," one neighbor said. "These people are running a group home, not taking care of the people that are there, packing in as many as they can. And nobody is watching or stopping them, or checking in on them. I feel like this is going to keep continuing."

Adult Protective Services officials later released a statement confirming that more occupants were removed from the home.

"Adult Protective Services removed several more people from the unlicensed group home in Rosenberg and helped place them in licensed facilities that can properly address their medical needs," officials said. "Ensuring the safety and well-being of our clients is our number one priority."

Coronavirus Updates:
Covid-19 Tracker:
More Than 993 Million People Have Gotten Vaccines Worldwide;
The U.S. has Administered 222 Million Doses

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


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 - This is the new version of the Transformation to Competitive Employment Act - It 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 such special certificates, and for other purposes
Home and Community Based Services Access Act of 2021

Representative Debbie Dingell (D-MI), Senator Bob Casey (D-PA), Senator Maggie Hassan (D-NH) and Senator Sherrod Brown (D-OH) have drafted a new bill, the Home- and Community-Based Services Access Act of 2021. The bill was written with input from the Arc and possibly other like-minded organizations, and contains provisions to increase federal support of HCBS settings eliminate waiting lists for services, and alter the landscape of services for people with I/DD. The Bill has not yet been introduced. The sponsors have opened a forum for comments from stakeholders until April 26, 2021.

VOR is at work on a response to this bill and we will keep our members posted as to our comments and how you, as stakeholders, may get involved when the time comes.


At this writing, there have been no bills entered in the 117th Congress that support a full continuum of care, protect employment options that rely on 14(c) wage certificates,
or advance the interests of Direct Support Professionals.
Please stay tuned.
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?

Contact us at [email protected]
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