July 30, 2021
The following two stories come from McKnights
Create a great offer by adding words like "free" "personalized" "complimentary" or "customized." A sense of urgency often helps readers take an action, so think about inserting phrases like "for a limited time only" or "only 7 remaining!"
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
It's August. For some, this is a vacation month. For us, August is a month of opportunity.

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 this August. We are asking for your support.

Reach out to your Senators or Representatives if you can. Or donate to VOR, to help us with our outreach. Or just write to us, at [email protected] to ask how you can be involved. We are here to help. Please help us to help you.
National News:
VOR supports a full continuum of care and the rights of individuals and families to choose what residential care and treatment options are the best fit for the needs of each individual. We support a full array of employment opportunities, including competitive integrated employment as well as vocational centers that pay commensurate wages thought Section 14(c) wage certificates. We fight for the needs of the individual, not for one-size-fits-all ideologies.

Unfortunately, many well-meaning individuals, elected officials, advocacy groups, and media outlets believe that supporting HCBS services means you are supporting everyone with I/DD. They may not realize, or they prefer not to acknowledge, that they are leaving many of the most severely impacted individuals behind. Case in point, the following article from Disability Scoop:
On ADA Anniversary, Biden Recommits To Disability Rights
By Michelle Diament, Disability Scoop, July 27, 2021
President Joe Biden used a White House ceremony marking the anniversary of the Americans with Disabilities Act to push his plans to spend billions on home and community-based services and end subminimum wage.

Biden, who was a co-sponsor of the ADA during his time in the U.S. Senate, hailed the landmark disability rights law for transforming American life for people with disabilities, but said there is still more progress to be had.

“For more than 60 million Americans living with disabilities, the ADA is so much more than a law; it’s a source of opportunity, participation, independent living and respect and dignity, the bulwark against discrimination, and a path to independence,” Biden said. “But, of course, this law didn’t bring an end to the work we need to do. Today, too many Americans still face barriers to freedom and equality.”
Biden touted his plan to invest $400 billion into home and community-based services, which he indicated would help people with disabilities live more independently. He said he’s glad to see Congress starting to move forward on a bill known as the Better Care Better Jobs Act, which would turn that proposal into a reality.

In addition, the president emphasized his stance on the continued ability of employers to pay people with disabilities less than minimum wage.

“I’ve also called on Congress to eliminate the discriminatory subminimum wage provisions that too often keep people with disabilities from getting good jobs with fair wages,” Biden said.

Justice Department Says It Will Not Investigate Covid-19 Nursing Home Deaths in Several States
By Sunlen Serfaty and Veronica Stracqualursi, CNN, July 24, 2021
The Department of Justice will not open a civil investigation into the Covid-19 response in state nursing homes in New York, Pennsylvania and Michigan, after the department was seeking to determine whether policies issued during the pandemic requiring Covid-19 patients to be admitted into the facilities may have contributed to deaths.

The announcement in a letter sent to GOP Rep. Steve Scalise prompted swift outrage from him and other Republicans who have accused New York Gov. Andrew Cuomo, a Democrat, of covering up Covid-19-related deaths in nursing homes in his state. Cuomo has denied any wrongdoing, but the state's handling of the data surrounding deaths in long-term care facilities has been the subject of an ongoing criminal investigation by the US attorney's office in Brooklyn.

In a letter on Friday that was obtained by CNN, the Justice Department said it "decided not to open a CRIPA (Civil Rights of Institutionalized Persons Act) investigation of any public nursing facility within New York, Pennsylvania, or Michigan at this time" after reviewing information provided by the states and other available information.

The Justice Department confirmed it opened an investigation in October 2020 into two facilities in New Jersey.

A Justice Department spokeswoman told CNN the department would not comment beyond what is in the letter. Cuomo's office declined to comment to CNN, and messages left with the other governors' offices were not immediately returned Saturday.

Cuomo, who was widely lauded in Democratic circles for his leadership in the early days of the pandemic, has since been the focus of significant scrutiny over his administration's guidance regarding Covid-19 and nursing homes.

In March 2020, his administration issued an advisory barring nursing homes from refusing to admit patients solely on the basis of a confirmed or suspected Covid-19 diagnosis in order to free up hospital beds.
The directive "may have put residents at increased risk of harm in some facilities," according to a January report from the state attorney general. The attorney general also found that some nursing homes throughout the state failed to take proper infection control measures and did not isolate Covid-19 patients in nursing homes.

Cuomo's administration also underreported the number of Covid deaths among New York's long-term care patients, according to the report, and then delayed sharing potentially damaging information with state lawmakers.

One of Cuomo's top aides admitted in February that the administration tried to delay the release of the data, wary of a federal Justice Department preliminary inquiry.

The New York Times and Wall Street Journal also reported in March that some of Cuomo's top aides allegedly rewrote a June nursing home report from state health officials to hide the higher Covid-19 death toll among the state's nursing home residents.

Facing pressure, Cuomo in February defended his administration's delaying release of data on Covid-19 deaths at long-term care facilities, but took responsibility for not providing the data when lawmakers requested it.

He claimed that his administration was following CDC guidelines at the time and that recovering Covid-19 patients were transferred out of hospitals as soon as possible so they wouldn't contract a secondary infection. He also said nursing homes could only accept the patients if they were able to care for them.

He also attributed the virus' spread in nursing homes to the caregivers rather than his administration's directive.

Following up on the July 4th, 2021 NY Times Editorial from David Axelrod.
A curated selection of some the letters to the Times' editor

NY Times, July 24, 2021
To the Editor:

David Axelrod is not alone in his fear for his beloved daughter, nor in his gratitude to the disability community, nor his dread of dogmas that threaten to derail her life. Our daughter, 51 and multiply disabled, lived at home for 32 years but needed more than we, therapists and day programs could offer.

As we saw her enjoy the community, friendship, vitality and even a degree of independence at her home at the Center for Discovery (a place similar to Misericordia), we understood how lonely our home-based care had been for her. The pity is not that larger specialized residential settings exist; it is that too few have the qualities required to make them excellent homes for our children.

Well-staffed apartments or small neighborhood group homes are doubtless preferable for most disabled people. For those with intense and complex needs, however, the best and likely only way for them to have the good life they, no less than we, deserve is to live with peers in excellent and caring intentional communities. Policy that ignores them is simply discriminatory and not worthy of the ideal of inclusion for which disability advocates have so valiantly fought.

Eva Feder Kittay
White Lake, N.Y.
The writer is the author of “Learning From My Daughter: The Value and Care of Disabled Minds.”
To the Editor:

David Axelrod and his daughter are immensely fortunate to have found a very special residential facility where she can thrive, surrounded by friends and engaged in meaningful activities, all while retaining full access to her community. Tragically, however, unlike the Axelrods, hundreds of thousands of autism families are facing a devastatingly bleak landscape with no viable options for adult housing.

While we support the Better Care Better Jobs Act for expanding federal funding for home- and community-based services for people with disabilities, we agree that the bill betrays a large segment of more severely disabled adults who require special facilities equipped to serve their complex needs. No amount of idealism can substitute for the cold hard fact that most require much greater support — and options exactly like those described by Mr. Axelrod.

Jill Escher
San Jose, Calif.
The writer is president of the National Council on Severe Autism.
To the Editor:

I, too, am the parent of an adult daughter with disabilities. David Axelrod’s description of his daughter’s situation after high school is intimately familiar to me. There is no greater sadness for a parent than to see their beloved child sitting home alone day after day. There is also no greater responsibility than to know that, if not for you, your child would never have a social life and that someday you will not be there.

I was excited to hear about the living arrangement his family found for his daughter. Such a situation would be a godsend to my family. And I was angry to hear that there are those who believe they are “doing good” without asking the possible recipients of that purported good.

In New York State the usual wait time for community housing can be up to 10 years. I will continue to advocate for my daughter on my own and along with the agencies that currently support her. I will continue to contact my state and federal representatives. And I will continue to hope and pray that it’s enough.

Hilda Kapeles
Oakland Gardens, Queens
To the Editor:

Like David Axelrod, I, too, have a 40-year-old daughter with developmental disabilities. Being a retired special education professor, I know of what Mr. Axelrod speaks from both a professional and personal perspective.

Mr. Axelrod is correct in castigating the absurd dogma: “All larger communities are bad. All small, neighborhood-based group homes are good.” Unfortunately, the 1960s deinstitutionalization movement was not followed by enough federal and state dollars to ensure high-quality services in smaller group homes. Some are good, some are bad and some are in between.

Thankfully, after experiencing bad and in between residences, my daughter is now in a good group home. But what makes it good is not its size, but the expertise and dedication of the staff to provide for the individual needs of each resident. It is essential that families have options along a continuum of placements in order to meet the needs of individuals with disabilities. As is evidenced by these two 40-year-old adult children with developmental disabilities, one place definitely does not fit all.

Daniel P. Hallahan
Charlottesville, Va.
The writer is professor emeritus of education at the University of Virginia.
To the Editor:

David Axelrod’s essay about finding housing and an environment to meet the needs of his daughter who is disabled struck home like a bombshell. As two physicians with a 30-year-old daughter who has cerebral palsy, mostly confining her to an electric scooter, we thought we would be able to use our resources to find appropriate housing. We can’t.

She is verbally gifted but has problems with managing the business of life. She needs support and supervision, but not too much of either. A nursing home would be a cruel warehousing of an outgoing young woman who loves to sing and act and is finishing a degree in English and education at a local university. A small group home would not provide the exposure to the wide world she loves. There are myriad levels of disability that require funding for many different solutions. One size does not fit all.

Debra Grossman
Gregg Lipschik

COVID Updates:
The following two stories come from McKnight's Long-Term Care News, an organization that speaks for and to the Senior Living, Home Care, and Nursing Home industries. We find that their stories often have relevance to families of those who liven in ICFs or individuals who receive HCBS services, and we share these articles with you.
Providers ‘Spinning Again’ — COVID Cases Projected to Peak Nationwide in October
By Kimberly Marselas and Danielle Brown, McKnight's Long-Term Care News, July 20, 2021

Total coronavirus infections are being projected to skyrocket and peak in mid-October with an estimated 390,000 cases nationwide, according to a new national model projection. 

The latest projections were released late last week by the COVID-19 Scenario Modeling Hub, which is run by researchers working in consultation with the Centers for Disease Control and Prevention, NPR first reported. The model offers four scenarios based on how many people get vaccinated and how quickly the disease, particularly the Delta variant, spreads nationwide.

The United States is currently averaging about 62,000 new cases per day over the last week, according to the CDC.

Ruth Katz, LeadingAge’s senior vice president of public policy and advocacy, during a member call on Wednesday said the seven-day case average had quadrupled since June 26, “just as we thought we were moving out of the pandemic.”

“Here we are spinning again,” Katz says. “The next few weeks are going to call on all of us, especially aging services providers, to hold steady with all these skills we’ve sharpened together.”

Jill Schumann, also of LeadingAge, noted that the most probable scenario in the projections supplied to CDC, with an assumption that 70% of Americans are vaccinated and that the delta variant is 60% more transmissible, predicted a threshold of about 60,000 daily cases.

“That’s kind of close to where we are now,” Schumann said, but she also pointed out that other scenarios show trends spiking up to 240,000 new infections daily and 4,000 deaths daily in October. That would be “almost as bad as last winter,” Schumann noted.

“There are lots of factors that could impact the course of the pandemic,” she added. “One of those is how quickly unvaccinated people get the vaccine. … Clearly, we’re not out of the woods yet, so let’s keep encouraging vaccination.”

As of mid-July, only 56% of Americans 12 and older are fully vaccinated, and rates among nursing home workers are below that in many states.

LeadingAge Joins Call for COVID-19 Vaccine Mandate for All Healthcare Workers
By James M Berklan, McKnight's Long-Term Care News, July 26, 2021

LeadingAge joined a list of at least 56 other professional healthcare groups that came out Monday morning in favor of a COVID-19 vaccine mandate for all healthcare workers. 

The coordinated announcement was meant to capture the attention of the American public at a time when COVID infections are rising in every state.

It is sure to meet resistance from dissenters, as the country remains firmly divided with a significant minority of citizens and professionals hesitant or adamantly against receiving a COVID-19 vaccination, all of which are still authorized only under Emergency Use Authorization (EUA) status by federal authorities.

The coalition of associations and healthcare professionals groups, however, said it views vaccination as a medical ethical imperative backed up by overwhelmingly large statistical evidence of their safety and efficacy.

“We call for all healthcare and long-term care employers to require their employees to be vaccinated against COVID-19,” the joint statement declared.

“This is the logical fulfillment of the ethical commitment of all healthcare workers to put patients as well as residents of long-term care facilities first and take all steps necessary to ensure their health and well-being,” the statement continued.

The endorsement of a vaccination mandate is seen as a bold move, especially in long-term care, where critics say ongoing staffing shortages would be exacerbated if nurses and other workers decide to quit or stay away from work rather than become vaccinated. Recent reports show just 59% of the national nursing home workforce has received one or more vaccine shots, with the resident population sitting at 20 to 30 percentage points higher on average.

Roughly 35% of all U.S. COVID-19 deaths have been associated with long-term care settings, making them the single-most vulnerable place for infection and/or death since the pandemic was declared in March 2020.

(LeadingAge is a national organization representing more than 5,000 nonprofit aging services providers and other mission-minded organizations that touch millions of lives of aging Americans)
VOR Bill Watch:
Click on blue link to view information about the bill


H.R.4131 & S.2210 - The Better Care Better Jobs Act - While this bill 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 such 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.


VOR takes no position on whether or not the minimum wage should be raised to $15 per hour, or some other amount. We do, however, oppose any bills (see H.R. 603 & S. 53, above) that would remove vocational centers and 14(c) wage certificates.

For those who do support raising the minimum wage, there are currently two "clean" bills in the House that would raise the minimum wage without taking opportunities to work in a therapeutic environment through the use of 14(c) certificates. Those bills are H.R. 112, from Rep. Al Green (D-TX) and H.R. 325, from Rep. Steve Cohen (D-TN)

Additionally, Senator Tom Cotton (R-AR) has introduced a bill in the Senate, S 478, that would raise the minimum wage to $10 over a period of three years for some workers, without eliminating 14(c) wage certificates. The bill would also require the Department of Homeland Security to implement electronic verification to verify that prospective employees are legally authorized to work in the U.S.
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