November 5, 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
Update on the Build Back Better Act

For months, VOR has been partnering with our peer advocacy groups, like-minded organizations, family groups and devoted family members, and staffers in offices of the House and Senate to have ICFs included in congressional legislation - first the Better Care Better Jobs Act, and then the Build Back Better Act when the BCBJ transformed into the BBB.

Simply put, Medicaid has two funding streams for people with I/DD. One works for those who seek community living and integration with non-disabled people. The other is there to attend to the health and well-being of a far more severely disabled population. With this bill, the House has literally turned their back on the most severely disabled Americans, their families, and the workforce that they rely upon for a better quality of life. The original language of both the BCBJ and the BBB would ahve increased funding for one group of intellectually disabled people, those who receive HCBS services, while ignoring another, those who rely on ICFs for a higher level of care.

VOR and our partners have asked this congress for parity - a share of funding increases for ICFs relative to HCBS services that mirrored the ratio of spending for ICF and HCBS in recent years. We have also asked for increases in wages and training for all Direct Support Professionals who work with people with I/DD, regardless of the setting in which those services are offered.

The current House bill does not provide this level of funding. Though cut down drastically from the $400 billion originally requested for HCBS, the current House bill provides $160 billion for HCBS. ICFs were acknowledged at the last minute, in Provisions Related to Elder Justice, which offer grants to train workers in a variety of settings. If the bill passes as written, ICFs will be competing with nursing facilities, skilled nursing facilities, home health agencies, hospices and tribal assisted living facilities for $1.6 billion - one one-hundredth of the amount offered to HCBS services. What's more, HCBS providers are also eligible for this grant. So not only do the HCBS advocates refuse to give people in ICFs a piece of their pie, they also have insisted on having the right to demand a share of the crumbs they have left for our families.

Also included in the House bill are provisions offering grants to states to fund programs that would help people with disabilities to participate in competitive, integrated employment. Unfortunately, the ideologues have included a provision that any state receiving these funds have to agree to end sheltered workshops and specialized (14c) wage certificates. Similar to the idea of supporting HCBS while not supporting people in ICFs, this provision would support programs for those who seek competitive employment while eliminating existing opportunities for individuals who prefer the sheltered, supervised environment. We believe this provision must be stricken from the bill.

Lastly, the bill contains a provision to permanently re-authorize the Money Follows the Person Rebalancing Act (MFP). VOR opposes this, mostly on grounds MFP has been used to erode the ICF system over the years. Moreover, how can congress continue to support a bill that proposes to "rebalance" the two funding streams without ever having stated what the proper balance might be? By permanently reauthorizing MFP, its proponents have made clear that their goal is to rebalance the two streams until only one exists, and there is no longer an option for families to choose ICF services.

Needless to say, we are trying to work with staffers in the Senate to remedy the injustices of the House bill. Admittedly, it is an uphill battle, but we do have more support and a stronger voice with these offices than we have had in years past. We persist, because we must persist.

In a nutshell, that's why we are fighting, and why we are asking for your support. We need all the help we can get. Please see our appeal below.
VOR's Annual Fall Membership Drive

Re-connect, Re-commit, Re-engage

This month, we are asking our members to renew their connection, their commitment and their engagement with VOR, and to our mission to advocate for human rights and high-quality care for all individuals with intellectual and developmental disabilities,

For nearly four decades, VOR has fought to protect a full continuum of care, a diverse offering of residential care options, a full range of employment opportunities, and the rights of families to make their own decisions in choosing what is best for their loved ones with I/DD.

Your options, your choices, are once again in danger of being phased out and eliminated. The needs of our most severely disabled individuals are being ignored by those who profess that one size fits all, that everyone does better in community settings, or that all people with I/DD are capable of working in integrated settings for competitive wages.

Once again, we need your help.

This November, we are asking you to dig a little deeper, to reach out a little further, and to work a little harder.

For your family.
For all of our families.
For those families who set the path for us.
For those not yet born who will need their families to follow our path in the years ahead.
We would like to extend an invitation to all VOR members and potential members to our
Nationwide Networking Meeting
via Zoom

November 15, 2021
7:00 pm Eastern, 6:00 pm Central, 5:00 pm Mountain, 4:00 pm Pacific.

VOR advocates for a full continuum of care for all individuals with disabilities. We believe that one size doesn’t fit all. Many of our members have loved ones with severe or profound disabilities- often with medical or behavioral issues- a population that is so often ignored.
After a brief introduction by one of our board members on some of VOR’s initiatives, we would like to hear from you. What is going on in your state? How are the needs of your loved ones being met (or not)? What changes would you like to see that would benefit your family member? How are you advocating for your family? And any other comments that you feel are relevant.
We’re hoping for an informal, relaxed conversation. We’re all in this together!

Enrollment is limited.

Please RSVP to [email protected] to receive a Zoom invitation.
National News:
Healthcare workers must be fully vaccinated by January 4
Emergency regulation pertains to the 76,000 providers which receive Medicare and Medicaid reimbursement.

By Susan Morse, HealthCare Finance News, November 4, 2021

Healthcare staff members who work in facilities that take Medicare and Medicaid reimbursement will be required by the Biden Administration to get vaccinated against COVID-19. The Centers for Medicare and Medicaid Services issued the emergency regulation today through an interim final rule that follows up on President Biden's promised vaccine mandate in September.

CMS will ensure compliance with these requirements through established survey and enforcement processes. If a provider or supplier does not meet the requirements, it will be cited by a surveyor as being noncompliant and have an opportunity to return to compliance before additional actions occur, CMS said.
The requirements will apply to approximately 76,000 providers and cover over 17 million healthcare workers across the country. Facilities covered by this regulation must establish a policy ensuring that all eligible staff members have received the first dose of a two-dose COVID-19 vaccine, or a one-dose COVID-19 vaccine, by December 5, before they can provide any care, treatment or other services.
All eligible staff must have received the necessary shots to be fully vaccinated – either two doses of Pfizer or Moderna or one dose of Johnson & Johnson – by January 4, 2022.

The regulation provides for exemptions based on recognized medical conditions or religious beliefs, observances or practices. Facilities must develop a similar process or plan for permitting exemptions in alignment with federal law.

"CMS's goal is to bring healthcare providers into compliance," the agency said. "However, the Agency will not hesitate to use its full enforcement authority to protect the health and safety of patients."

Study Finds Big Differences In Autism Rates By Community
By Shaun Heasley, Disability Scoop, November 5, 2021
In some U.S. communities autism prevalence is more than three times the national average, a new study suggests.

While the developmental disability is estimated to affect less than 2% of children nationwide, rates in parts of New Jersey are nearly 7% or higher, according to findings published recently in the journal Autism Research.

Researchers took an in-depth look at the number of children with autism in four New Jersey counties that include 76 school districts. They combed special education records and those from hospital-based developmental centers to identify all children born in 2008 who had autism indicators at age 8. Then clinicians reviewed the records to confirm whether a child qualified for a diagnosis on the spectrum. The methodology used is consistent with what the Centers for Disease Control and Prevention employs to come up with national prevalence estimates.
The study found rates of the developmental disability that varied considerably from one place to the next and by other factors including race, socioeconomic status and school district size.
Overall, autism prevalence was 3.6% in New Jersey. But the rate topped 5% in a fifth of school districts, reaching a high of 7.3% in the state’s largest suburban district, Toms River.

“We found that mid-socioeconomic status communities, like Toms River, had the highest ASD rates, which was contrary to expectation because in earlier U.S. studies ASD rates were highest in high-socioeconomic status communities,” said Josephine Shenouda, a project coordinator at Rutgers New Jersey Medical School and a co-author of the study.

The Fall Edition of the VOR Voice
is now available for download on our website

Competitive Employment & Sheltered Workshops:
Feds Update Rules For Disability Employment
By Michelle Diament, Disability Scoop, November 4, 2021
Please note: The following guidelines were issued by the Dept. of Education, not the Dept, of Labor. They do not mention Sheltered Workshops, but they do show an expansion of the DOE's definition of what constitutes a competitive integrated environment.

New federal guidance is spelling out what qualifies as competitive integrated employment for people with disabilities.

The U.S. Department of Education issued an updated frequently asked questions document late last month that serves as guidance for the vocational rehabilitation program. The new information replaces guidance from 2017, the agency said.

Federal law requires that individuals with disabilities receiving services through vocational rehabilitation must be provided the opportunity to obtain competitive integrated employment.

For a job to qualify under that standard, the guidance indicates that an employee with a
disability must be paid at least minimum wage and compensated on par with workers without disabilities doing the same jobs. In addition, the position must be one that is “typically found in the community” where employees with disabilities interact with people without disabilities to the same extent as other workers. And, the job must offer opportunities for advancement much like those available to people without disabilities doing similar jobs.

The updated guidance is the culmination of three years of meetings with stakeholders, the Education Department said. Most of the questions the agency received related to the location where work is performed. Though the guidance offers clarity on this point, officials noted that the Education Department’s interpretation has been in place since the mid-1990s.

If You Don’t Know, Now You Know - Disabled Workers Rights
From The Daily Show with Trevor Noah
One of our supporters recently brought to our attention a video clip from The Daily Show with Trevor Noah that discusses Sheltered Workshops. It's not what we would usually expect from a comedy program, but we are encouraged that this subject has been brought to the attention of a wider audience than it usually receives.
Shop at Amazon? Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to instead of the regular 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. Then paste a link to AmazonSmile into your bookmarks, and use that link every time you shop!

Thank you for supporting VOR!
State News:
Pennsylvania - Despite COVID Delays, Pa. Still Seeking to Close Two State Centers by Next Year
By John Finnerty, Post-Gazette, November 1, 2021

Two state centers the Department of Human Services plans to close next year have already shed about one-third of their workers and about one-quarter of their residents, an agency spokesman said.At the time the state’s plans were announced in 2019, there were 1,179 workers at the two centers — 752 at Polk Center in Venango County and 427 at White Haven Center in Luzerne County, said Brandon Cwalina, the DHS spokesman. The facilities provide care for people with mental disabilities. Today, there are just 526 workers at Polk and 274 at White Haven, Mr. Cwalina said.

The Department of Human Services announced plans to close the facilities within three years. Mr. Cwalina said that COVID-19 has created delays in the processing of closing the facilities but that the state hasn’t given up on its timeline of closing the centers next year.

“The pandemic has created delays in individual transitions, but we continue to follow the thorough person-centered transitioning planning process for each resident to ensure that each resident has a plan in place that best meets their needs and preferences,” he said. “At this time, we have not amended the closure timeline, but no resident will leave the center without a destination of their choosing and until a fully developed plan that meets their physical, emotional, social, and mental health needs is finalized,” Mr. Cwalina said.

Polk Center had 194 residents when the closure plan was announced and its current population is 156 residents. White Haven had 112 residents in 2019 and today it has 79.

The Senate Human Services Committee approved legislation last week, Senate Bill 924, that would require the Department of Human Services to halt the planned closure for at least five years. The legislation would also call for the creation of a task force to analyze the need for, and plans for, any state center closings.

Lawmakers opposed to the closings said that the department’s announcement came with little notice and that closing the facilities would be too burdensome for families, particularly elderly parents of residents of the state centers. When Polk and White Haven close, the state will only have two state centers — in Ebensburg, Cambria County, and Selinsgrove, Snyder County.

"Especially in light of the COVID pandemic, it is critical that we stop the announced closure of Polk and reassess the Wolf Administration's half-baked decision to move these fragile individuals out of the only home they have ever known, where they currently receive comprehensive and loving care," Sen. Scott Hutchinson, R-Venango, said.

Tennessee - Twelve Years on the Waiting List: Why is it Taking so Long to Get Services for People with Intellectual Disabilities?
By Diane Morrow-Kondos, Tulsa Kids, November 3, 2021
Wanda Felty lives in Norman with her husband and one of her daughters. She is the mother to three adult daughters and grandmother to seven grandchildren. Her middle daughter is 33 years old and was born with significant developmental disabilities along with complex medical conditions. Wanda works at the Center for Learning and Leadership, which is Oklahoma’s University Center for Excellence in Developmental Disabilities. She is also a Family Faculty for the Oklahoma LEND (Leadership Education in Neuro-developmental Disabilities) Program. Wanda and her husband Rick launched one of the first campaigns to bring awareness to the offensive use of the r-word, Wanda became the coordinator of the DDS Waiting List meeting in 2006 when the original parent creator asked her to take it over after the loss of her daughter. Wanda humbly accepted and hasn’t looked back once.

The DDS (Developmental Disability Services) Waiting List Meeting is a meeting created by families for families. It allows families to learn from each other, hear from leadership in our state, and share their family’s situation. It also is a place for state legislators to hear from families who have a loved one with developmental disabilities who need and want long-term supports for their loved one. Wanda remembers her daughter being on the Waiting List and thinking no one knows or even cares.
Since taking over as coordinator and facilitator of the Waiting List Meeting, Wanda has been dedicated to sharing the stories of families she hears from and offers support directly to the families waiting and promising that she will continue to advocate for everyone on the waiting list. She wants everyone on that list to know someone knows about them and someone cares about them. Wanda has always said she is just a mom. But what that translates to is that she is a mom on a mission to help as many people as possible in Oklahoma by advocating for services and supports to be available when needed and where needed. Because of her advocacy, dedication, knowledge, and skills, Wanda is considered one of Oklahoma’s leading experts in disability services and policy.

  1. Would you please explain what the waiting list is?
  2. Who should apply to get on the list, and how do they do that?
  3. What is the estimated wait time for someone on the list?
  4. Why is there such a long wait, and what is the solution to shorten that wait time?

Texas - A Man with Severe Autism Weighed just 85 Pounds when he Died in Taxpayer-Supported Care.
By Tanya Eiserer, Jason Trahan, Lourdes Vazquez, WFAA, November 4, 2021
Like any mother of a growing boy, Maria Covarrubias spent a lot of time in the kitchen. 
Her son, Raul Olguin, loved to eat.  

“With me, he always wanted to eat,” she said in Spanish. “With me, always.” 

Raul had the intellect of a toddler. He was severely autistic and needed constant supervision. He lived with his mother for most of his life – except for his final 71 days, when he was placed with a caregiver in a Garland home. 

By the time the 24-year-old died in April 2019, an autopsy showed he weighed 85 pounds. The pathologist found that he was malnourished and that lack of food contributed to his death.  

A two-year WFAA investigation into Raul’s case found his caregiver – licensed by the state – had a federal criminal conviction and should never have been looking after him or any other disabled people. The caregiver managed to make it through a loophole in Texas’ criminal background check process. Yet, another loophole allowed her to continue taking care of vulnerable individuals while under investigation for neglect, WFAA found. 
“Many people failed him,” said Ana Ortiz, Raul Olguin’s former caseworker who knew him and his mother well. “Someone needs to be held accountable for what happened to him.” 

Brandon was a caretaker working as a contractor for Paso a Paso, a company paid by the state of Texas to find and help supervise foster homes for the intellectually disabled. 

Records show Paso a Paso officials periodically checked on Raul at Brandon’s home. They noted that he was losing weight, according to state records obtained by WFAA. 

“The caregiver [Brandon] would say he won't eat, but when we witnessed him eating, he would gobble up his food like he had not eaten,” Paso a Paso’s program manager told state investigators looking into Raul’s death. “He inhaled his food. Raul was grabbing at the sandwich of other clients.” 

Year-End Giving to VOR

For those members who have been blessed to reach their seventies, and who will be required to take a distribution from their IRA's by December 31, 2021, please consider using this opportunity to make a contribution to VOR.

VOR Bill Watch:
[Please click on blue link to view information about the bill]


Including language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services in the Build Back Better Reconciliation Act (H.R. 5376)

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

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 - The Transformation to Competitive Integrated Employment Act - this bill 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 these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.
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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