August 6, 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

Please Help Us, That We May Better Help You
Get Involved

Here at VOR, we are always looking for members who want to get involved in helping us to continue our mission of supporting high quality care and human rights for all people with Intellectual and Developmental Disabilities, and supporting their families, their guardians, and their caregivers.

We have a new President, a smaller, more dedicated Board of Directors, and a will to get things done. This is a great time to join in. All it takes is a few hours of your time each month and a willingness to help.

  • We need active members in each state, willing to coordinate with each other to reach out to more individuals and families.

  • We need people to help with our marketing and communications, to help us spread our message.

We will help you to become a better advocate for your loved ones with I/DD.

Contact us at [email protected]


Other Ways You Can Help

Congress will be out of session for part or all of August. Many of our elected officials will be back in their home states, and VOR members in some states will take this as an opportunity to meet with them and discuss issues that affect the future well-being of our loved ones with I/DD. This is the time to make appointments in state or in district to meet with Senators and Representatives and to let them know that the Better Care Better Jobs Act doesn't provide for everyone with I/DD, that it overlooks, marginalizes, or discriminates against people in ICFs. This a time to let your elected officials know that they can do better, and to ask them to help all people with I/DD, not just those in HCBS settings.

We encourage our members to reach out. Make appointments with your elected officials. And reach out to us for support. We are here, working to help your family. We are here to help you become a better advocate for your loved one with I/DD. And we are here to provide you with the information and tools you need.

Likewise, most organizations don't look at August as a month for raising funds or asking for donations. But we have to. Our expenses are up this year, and the COVID pandemic has hit us just like it has many other non-profits. We haven't been able to meet in Washington, D.C. last June, or the June before. And that has had a marked effect on our ability to reach out to Members of Congress.

We have recently taken on the services of a political consultancy firm, Health Policy Source, to aid in our outreach and our access to congressional staff. In just a few short months, the results have been paying off. Together, we have been increasing VOR's presence on Capitol Hill through Zoom meetings, phone calls, and email conversations. We are re-establishing ourselves as a presence on the Hill despite the setbacks of the last few years.

So please,

Reach out to your Members of Congress
Donate to VOR

Or write to us, at [email protected]
and tell us how we can better help you.
State News:
TennCare Patients with Severe Disabilities have Less Access to Home Care than Others with Similar Needs
By Mariah Timms, Nashville Tennessean, August 3, 2021

Five young Tennesseans diagnosed with severe intellectual disabilities and medical conditions sued the state over a possible violation of the Americans with Disabilities Act.

Through their caretakers and attorneys with the Tennessee Justice Center, they say a quirk of health care logistics means they're getting worse care than others enrolled in the same care programs.

Each of them is eligible for Tennessee's Medicaid program known as TennCare and for a waiver through the Department of Intellectual and Developmental Disabilities.

With the waiver, these individuals and similar patients are able to use state funds to support their needs at home with their families, instead of being institutionalized to receive the same level of care.

But depending on which branch of the health care system is handling their DIDD waivers, they might have vastly different access to paid, trained caregivers.

Earlier this year, the Tennessee General Assembly enacted legislation that required the agencies that contract with TennCare to provide services under the waiver to pay an hourly wage of at least $12.50, including for the type of direct care professionals the patients in this case need.

The legislation did not change the wage requirements for other services under the waiver, which the lawsuit says are "well below" the rates TennCare pays for those services under other circumstances.

Tennessee Families Struggle with State Agencies to Get Home-Based Care for Those with Disabilities
A federal lawsuit alleges Tennessee violates the Americans with Disabilities Act and Medicaid Act
By Anita Wadhwani, Tennessee Lookout July 29, 2021
Drama Bryant’s entire life has revolved around caring for her little brother, Jay, who — at 32 years old — requires 24/7 assistance as a result of congenital conditions that leave him unable to eat, bathe, go the bathroom, speak or walk unassisted.Jay Bryant has Down syndrome and autism, suffers seizures, severe reflux disease and eczema and lives with chronic pain. If no one is looking, he will try to eat grass, dirt, rocks or other inedible items. When he’s distressed, he hits himself hard enough to leave marks.

His intellectual and physical disabilities qualify him for a program operated by the Tennessee Department of Intellectual and Developmental Disabilities that is supposed to provide Jay with 337 hours of professional care each month in the home he shares with his 69-year-old mom — who herself is disabled and suffering early symptoms of dementia.

But his family has gotten no outside help. Instead, it has fallen to Drama Bryant, 38, to step in to care for her brother, full-time, while their desperate search for caregivers continue.

Tennessee, much like the rest of the nation, has long experienced a shortage of workers willing to take the low-pay, high stress jobs that are vital to
helping people with severe disabilities. The caregiver scarcity has reached crisis proportions during the new COVID-era of labor shortages.

Families like the Bryants, however, face yet another barrier to finding professional caregivers, this one specific to Tennessee.

Jay Bryant is enrolled in a program through the Department of Intellectual and Developmental Disabilities, which provides home-based services. The services are paid for by Tennessee’s Medicaid program, TennCare, which provides similar services to people without intellectual disabilities.

The two programs offer differing pay rates for comparable work. DIDD’s program pays lower wages to in-home caregivers for people with intellectual disabilities than TennCare pays for caregivers providing the same services to other home-bound individuals — those with physical illnesses or disabilities, for example.

As a result, families of people with intellectual disabilities are not just competing for workers with fast food and retail industries. They are competing for workers who get more money from TennCare for providing the same toileting, feeding, bathing and daily care to people who are equally physically incapacitated but do not have an intellectual disability.

South Dakota - Closing Redfield Developmental Center Broached, Greenfield Backs Facility
By Elisa Sand, Aberdeen News, July 30, 2021
Last week wasn't the first time state Sen. Brock Greenfield, R-Clark, heard a fellow legislator bring up the idea of closing the South Dakota Developmental Center in Redfield.

The topic was broached during a July 21 meeting of the Joint Appropriations Committee in a follow-up discussion with South Dakota Department of Human Services Secretary Shawnie Rectenbaugh.
Rectenbaugh was providing information to the committee after the group toured the facility earlier this summer. That information included steps the South Dakota Developmental Center has taken to find efficiencies, including moving residents to a more centralized area and identifying buildings the campus no longer uses.

At one time, the developmental center served 1,200 people. But Rectenbaugh said during the meeting that the census is now closer to 80.

That reduction has happened through the years as residents at the developmental center have moved to community-based adjustment training centers once they are ready.

"The services we provide at SDDC are specialized," Rectenbaugh said. "They are services for people who are not yet ready for the community."

Once the residents are able to manage themselves, she said, the can move to other facilities.

[Greenfield] praised the employees for their hard work and said it is "short-sighted to say we could diminish costs by relocating them."

Pennsylvania - Two Mothers Share Fight for Disabled Sons at Ebensburg Group Home
By Randy Griffith, Tribune-Democrat, July 31, 2021
Carrie Krumenacker and Michelle Pletcher thought they had found a suitable home for their intellectually disabled adult sons.

A friend had recommended Ebensburg-based Community Services and Support Corp., one of about a dozen organizations operating group homes in Cambria County under the Department of Human Services’ Community Residential Rehabilitation program.

Krumenacker’s son Cody, 22, and Pletcher’s son Charles, 32, both had had issues at other homes, so the two mothers were wary and tried to keep in touch with staff at the Rowena Drive house.

“In the beginning, it was good,” Pletcher said, explaining that one of the direct support professionals took time to understand their sons’ complicated needs. “He was very empathetic with the boys. He was very empathetic to their need. Built that bond with them.”

Then that individual left CSSC’s employment.
“They took him out of the bus, and the wheels came off,” Pletcher said. “My phone started ringing at 7 a.m. and it wouldn’t stop until 7 at night. There was always a panic situation going on.”

They tried working with company management, then contacted the Department of Human Services and the Cambria County Behavioral Health/Intellectual Disabilities Programs. Concerns included missed doctors’ appointments and missed medication.

The Tribune-Democrat’s review of online documents showed that a November inspection of the home by the DHS Office of Developmental Programs cited the lapses and found other violations. The DHS ordered the company to implement staff training and additional measures to prevent future violations.

Documents obtained from the Department of Human Services show that, when the plan of correction had not been fully implemented in January, the office placed CSSC under a six-month provisional license and again ordered a plan of correction.

By then, Krumenacker and Pletcher had removed their sons from the CSSC center and were caring for them in their own homes. They say they are running out of options.
“We are the first ones to tell you our kids aren’t perfect,” Krumenacker said. “I wish I could find a place where they can get out and do things on their own.”

Group homes for those with intellectual disabilities have been around for about 50 years, reflecting a time when the state began moving those individuals out of large institutions and into community settings.

Although she doesn’t believe in institutionalizing her son or others with similar issues, Krumenacker said the institutions have the advantage of an infrastructure that includes medical professionals, psychologists, dietitians and others with expertise she says is lacking in many group home settings.
Pletcher also said more expertise is needed.

“You don’t have nurses,” she said. “You don’t have anyone with some sort of education in medicine who understands their diagnosis.”

In addition to intellectual disability, both of their sons have been diagnosed with mental health disorders. The mothers say failure to keep their medication on schedule has led to problems.

They say those working in the homes don’t receive enough training.

Direct support professionals receive a minimum of 24 hours of training before they can work in a group home. That includes specific training for each individual’s needs and information on how to follow the individual support plans that are updated every year to include all the individual’s special needs and strategies for social, vocational and recreational engagement.

While they admit providing full-time supervision of their sons at home is exhausting, Krumenacker and Pletcher say they don’t see any viable options.

“Would I love to have a place where he could be cared for and they would be able to handle him? Absolutely,” Krumenacker said. “They are not out there.”

Pletcher said: “You feel like you have to fight to get any kind of help.”

COVID Updates:
The Delta variant continues to spread across the US, The number of previously unvaccinated people now seeking vaccinations has risen, as have hospitalizations in many affected states. New rules are being imposed on healthcare workers, mask mandates are being enacted, and vaccine passport programs are being initiated. Below are a few articles showing trends in several states.
California Healthcare Workers Must Be Vaccinated by End of September Under New Health Order
By Luke Money, Los Angeles Times, August 2, 2021
In what officials characterized as the first requirement of its kind in the nation, California ordered Thursday that healthcare workers statewide must be fully vaccinated against COVID-19 come early fall.

The new mandate applies to employees in hospitals, skilled nursing facilities, clinics, doctor’s offices, hospice facilities, dialysis centers and most other healthcare settings, and stipulates that they complete their inoculation regimen by Sept. 30.

“As we continue to see an increase in cases and hospitalizations due to the Delta variant of COVID-19, it’s important that we protect the vulnerable patients in these settings,”
Dr. Tomás Aragón, state public health officer and director of the California Department of Public Health, said in a statement.

“Today’s action will also ensure that healthcare workers themselves are protected.
Vaccines are how we end this pandemic.”

The state also ordered that hospitals, skilled nursing centers and intermediate care facilities must verify that visitors indoors are either fully vaccinated or have tested negative for the coronavirus within 72 hours of their arrival.

Illinois Gov. Pritzker Announces COVID-19 Vaccination Requirement for Some State Employees
By Spencer Maki, KWQC TV-6, August 5, 2021

The state of Illinois is requiring COVID-19 vaccinations for some state employees, according to an announcement made by Gov. J.B. Pritzker on Wednesday.

“Such as our veterans homes, our correctional facilities, and the Dept. of Human Services Developmental Centers and psychiatric hospitals,” Gov. Pritzker said.

Those state employees are required to get the vaccine by Oct. 1.

The state’s new mandate comes as a growing number of private companies are making their own vaccine requirements.

Walmart announced all employees at their headquarters and managers who travel within the U.S. must be vaccinated by early October.

Meat producer Tyson Foods is requiring office workers to become vaccinated by Oct. 1. All other employees will have until Nov. 1. According to the company, almost half of their workforce is already vaccinated.

“I applaud those employers who’ve taken steps to protect their employees, their customers, and the public from the virus. I hope to see others join them,” Gov. Pritzker said.

A vaccination requirement for employees by the state of Illinois and private companies is completely legal and government organizations such as the Equal Employment Opportunity Commission make that clear.

New Jersey Health Care Workers Required to get COVID Vaccines by Sept. 7 — or Test Weekly
By Lindy Washburn, NJ Herald, August 2, 2021

Every health care worker in New Jersey's private and public health care facilities, along with those who work at state prisons and county jails, will be required to get vaccinated against COVID-19 by Sept. 7, or get tested once or twice every week for the coronavirus, Gov. Phil Murphy announced Monday.

The mandate applies not only to employees of state-owned facilities, such as the state veterans' homes, psychiatric hospitals and developmental centers, but also to privately owned hospitals, nursing homes and behavioral health care facilities.

"This mandate is the floor," Murphy said. "If we do not see significant increases in vaccination rates among employees in these settings, we are ready and willing to require all staff to be vaccinated as a condition of their employment."

Florida Doctors are ‘Angry and Ashamed’ at Governor Ron DeSantis as State Becomes National Covid Epicenter
By Josh Marcus, Yahoo News, August 1, 2021

Florida doctors say they’re “angry and ashamed” over governor Ron DeSantis’s response to the resurgent coronavirus. The high profile Republican has repeatedly criticized federal public health guidance and vowed not to institute new lockdowns or mask mandates, even as the state becomes the national epicenter of the virus, with the Delta variant ravaging the unvaccinated segments of its population.

“While hospitals in our state were filling up, DeSantis was shouting about ‘Freedom over Faucism,’” Bernard Ashby, a Miami cardiologist who leads the state’s Committee to Protect Health Care, told WLRN. “If DeSantis were as concerned about stopping COVID-19 spread as he was about coming up with these clever jabs about Dr. Fauci, we might not be in this position.”

The governor’s office insists the state is in good shape under Mr DeSantis’s Covid leadership, with the recent spike just a “seasonal” jump, but Florida’s Covid data tells another, far more grim story.

Florida is now the national center of the Delta-fueled Covid resurgence. Cases are up 50 per cent week over week, with 110,000 new ones this week alone, levels not seen since January when the vaccine wasn’t widely available. The state has a positivity rate of 18.1 per cent, and more people hospitalized than any other state in America.

What’s more, the people caring for those in hospital are at risk too: Florida health care workers have some of the lowest vaccination rates in the nation. An AARP report found that as of last month, just 42 per cent of the state’s nursing home workers were fully vaccinated, well behind the national average of 56 per cent.

“There is no higher risk area in the United States than we’re seeing here,” Dr. Aileen Marty, a Florida International University infectious disease expert, told the Miami CBS affiliate. “The numbers that we’re seeing are unbelievable, just unbelievably frightening.”

Despite the growing threat, Mr DeSantis has held fast to a stance against lockdowns, mandates, and other measures shown to stop the spread.

Virginia - Northam Announces New Vaccine and Testing Requirements for State Employees
School districts will also be expected to implement universal mask wearing this fall, governor says
By Kate Masters, Virginia Mercury, August 5, 2021

Roughly 122,000 state employees will be required to show proof of vaccination or undergo weekly testing, Gov. Ralph Northam announced Thursday — the latest in a line of mandates across the country aimed at curbing the spread of the coronavirus delta variant.

Northam’s spokeswoman, Alena Yarmosky, said the policy will apply to employees and contractors within the executive branch, which includes the Virginia Employment Commission, State Police, and Department of Motor Vehicles. Health care workers for state-run facilities — including psychiatric hospitals operated under the Department of Behavioral Health and Developmental Services — are also subject to the new requirements.

As COVID Cases Surge, Montana Officials Say Nursing Homes Can't Require Vaccinations
By Sam Wilson, Independent Record, August 3, 2021

Nursing homes and other long-term care facilities in Montana can't require employees or residents to be vaccinated against COVID-19, according to guidance released by the state last week to address lingering questions about a controversial new vaccine discrimination law.

And as the fast-spreading Delta variant has caused COVID-19 cases and hospitalizations among unvaccinated Americans to soar nationally, businesses in Montana also cannot require those who refuse to be vaccinated to wear masks to access their premises — unless they require everyone to wear a mask. Health care facilities are, however, allowed to ask employees, patients and others if they have been vaccinated, and provide "reasonable accommodations," like face masks, for those who are unvaccinated or decline to provide their status.

House Bill 702, sponsored by Rep. Jennifer Carlson, R-Manhattan, sought to bar discrimination against unvaccinated people in Montana by prohibiting government entities and most businesses from requiring that staff, customers or others be vaccinated as a condition of employment or to access the premises. Republicans who supported the bill argued refusing services or employment on the basis of vaccination status is a form of discrimination and a violation of individual freedoms. Some supporters of the bill also questioned the safety of vaccines in general and noted the COVID vaccines were approved under federal emergency use authorizations.

Federal and state agencies, as well as medical experts and organizations from across the country, have emphasized that large-scale trials have shown each of the approved vaccines to be safe and effective in adults.

The bill was aggressively opposed by medical professionals, hospitals and other health care groups during the recent legislative session. Republican lawmakers passed it despite universal opposition by minority Democrats in the House and Senate, and Republican Gov. Greg Gianforte signed it into law in May.

The law has made Montana the only state in the country that prohibits private businesses from requiring employees to get vaccinated, according to the National Academy for State Health Policy, which tracks vaccine-related legislation introduced across the United States. Similar legislation that's been signed into law in other states only applies that mandate to governmental entities.

The new law became effective at the beginning of July. Since then, a sharp uptick in new COVID cases among unvaccinated people in the U.S. has prompted parts of the country to return to restrictions that limit the spread of the virus. Last week, the federal government announced that federal employees will soon be required to either be vaccinated against the disease or be tested regularly for infection.

HB 702 carves out exemptions for vaccines required for attendance in public schools, as well as long-term care facilities, like nursing homes and assisted living centers — but only in the event that the new state law would put them at odds with federal health regulations.

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


Congressman Glenn Grothman (R-WI) has introduced two bills in the House to support
Vocational Centers and 14(c) Wage Certificates:

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 - 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]
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377