August 13, 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.

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.

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.
National News:
Note: Several of the national stories this week focus on funding and initiatives that apply to non-ICF facilities, notably Nursing Homes, Skilled Nursing Facilities, HCBS Group Homes and HCBS Home Care services. Others include ICFs tangentially.

It is important to remember that all of these services are funded through Medicaid, and are part of the larger system of providing care for those in the aging, disability, and I/DD communities. We hope our readers will see these articles in context of the full continuum of care, and how ICFs might be affected or might be completely overlooked as our government makes increases funding or improves in staffing for these vital services.
Biden Administration Considers Withholding Funds and Other Measures to Spur Vaccinations
By Annie Linskey and Tyler Pager, Washington Post, August 5, 2021
The Biden administration is considering using federal regulatory powers and the threat of withholding federal funds from institutions to push more Americans to get vaccinated — a huge potential shift in the fight against the virus and a far more muscular approach to getting shots into arms, according to four people familiar with the deliberations.

The effort could apply to institutions as varied as long-term-care facilities, cruise ships and universities, potentially impacting millions of Americans, according to the people, who spoke on the condition of anonymity to discuss sensitive conversations.

The conversations are in the early phases and no firm decisions have been made, the people said. One outside lawyer in touch with the Biden administration on the issue is recommending that the president use federal powers sparingly.

There is a particular focus in the discussions on whether restrictions on Medicare dollars or other federal funds could be used to persuade nursing homes and other long-term-care facilities to require employees to be vaccinated, according to one of the people familiar with the talks.

The discussion at the highest level of government also signals a new phase of potential federal intervention as the White House struggles to control the delta variant of the virus, which is spreading more rapidly than even some of the more dire models predicted.

Health Economists Urge CMS to Mandate COVID-19 Staff Vaccinations through Quick Rule-Making Process

By Kimberly Marselas, McKnight's Long-term Care News, August 11.2021

A trio of prominent health policy experts is calling on the Centers for Medicare & Medicaid Services to “tap the levers” of its regulatory powers and use the Rules of Participation to require frontline nursing home workers to get vaccinated against the coronavirus.

“Unvaccinated healthcare workers put patients at high risk, given that their jobs require close interaction with unvaccinated patients and others who are immunocompromised and at higher risk for complications,” wrote Jill Rosenthal, Emily Gee and Maura Calsyn of the Public Health Policy at the liberal-leaning Center for American Progress.

“Congregate settings, such as long-term care facilities, are particularly susceptible to the spread of infectious disease…. CMS should now update (the Rules of Participation) to mandate that healthcare and LTC staff and contractors, as well as healthcare providers with hospital privileges, are vaccinated against COVID-19.”

The Rules of Participation govern the operations of all U.S. nursing homes receiving Medicaid or Medicare payments in exchange for caring for beneficiaries. Those that violate the rules are subject to penalties, and repeated infractions can lead to loss of certification and removal from the federal system.
To update such rules, CMS normally uses a notice-and-comment rulemaking process, but the authors noted the agency can instead adopt changes by issuing interim final rules when it finds there is “good cause” and the traditional process is “impracticable, unnecessary, or contrary to the public interest.”

On Tuesday, the agency confirmed to McKnight’s Long-Term Care News its authority to quickly institute workplace requirements in the name of patient safety, but officials did not say whether they are considering a vaccine mandate.

“The agency remains dedicated to ensuring nursing home staff and residents have the information they need to improve vaccination rates,” a spokeswoman said, noting ongoing requirements to educate staff and residents about shots and report acceptance rates. “CMS has authority to establish requirements to ensure the health and safety of individuals receiving care from all providers and suppliers participating in the Medicare and Medicaid programs.”

State Medicaid Home & Community-Based Services (HCBS) Programs Respond to COVID-19: Early Findings from a 50-State Survey
By Molly O’Malley Watts, MaryBeth Musumeci and Meghana Ammula, Kaiser Family Foundation,
August 10, 2021
The COVID-19 pandemic presented a public health emergency that was unprecedented in its scope and duration and brought new focus to the long-standing unmet need for home and community-based services (HCBS) among seniors and people with disabilities and direct care workforce shortages. Recognizing Medicaid’s role as the primary payer for HCBS, this issue brief presents early findings from the most recent KFF 50-state survey of Medicaid HCBS programs. It focuses on state policies adopted in response to challenges posed by the pandemic, the pandemic’s impact on Medicaid HCBS enrollees and providers, and states’ early plans for the new American Rescue Plan Act (ARPA) 10 percentage point temporary increase in federal Medicaid matching funds for HCBS. We survey states about HCBS provided through state plan authorities and waivers. There were 277 HCBS waivers in FY 2018. Overall, 41 states responded to the survey by mid-July 2021, accounting for 87% of total HCBS spending nationally in FY 2018, though response rates for specific questions varied. We highlight some specific state examples where states provided additional information with their responses. Key finding include the following:

  • Important data gaps remain, with just under half of responding states tracking COVID-19 vaccination rates among Medicaid HCBS enrollees. At the same time, state HCBS programs are playing a role in facilitating vaccine access for HCBS enrollees, with most responding states adopting multiple policies in this area. Over one-third of responding states have publicly available data on COVID-19 cases and deaths among HCBS enrollees.

  • The Medicaid HCBS provider infrastructure declined during the pandemic, with two-thirds of responding states reporting a permanent closure of at least one provider. Most of these states reported permanent closures among more than one HCBS provider type. States most frequently cited workforce shortages as the pandemic’s primary impact on in-home and group home services, while closures due to social distancing measures was the most frequently reported primary impact on adult day health and supported employment programs.

  • Over half of responding states reported early plans for the new ARPA temporary enhanced federal funds for Medicaid HCBS. The most frequently reported activities were provider payment rate increases and workforce recruitment.

Minimum Staffing Requirements, Higher Medicaid Funding for Nursing Home Workforce Highlight New Bill

By Danielle Brown, McKnight's, August 11, 2021

Nursing homes would be required to meet minimum staffing standards but also receive additional Medicaid funds to support workforce and care improvements under federal legislation introduced Tuesday. It aims to improve staffing, quality and oversight of facilities in response to the COVID-19 pandemic and its ongoing toll on the industry.

The legislation, billed the Nursing Home Improvement and Accountability Act, was introduced by Democratic lawmakers on the Senate Finance and Aging committees. The bill would require skilled nursing and other nursing facilities to have a registered nurse on duty 24 hours a day, as well as a full-time infection preventionist.

States would also be provided with a temporary, enhanced federal Medicaid match to fund the staffing and care improvements under one proposal in the legislation. It would kick in during the first full calendar quarter after the legislation’s enactment, if it’s approved by lawmakers.

The funding would only be allowed to expand efforts to improve nursing facility staffing, such as improved wages and benefits, and resident care, including expanded person-centered models of care.

The American Health Care Association/National Center for Assisted Living said it appreciates that lawmakers recognize the need to enhance Medicaid funding for additional staffing, but that a permanent funding source would be a more helpful solution. The association, along with LeadingAge, has pushed for more funding to help providers address staffing challenges exacerbated by the pandemic.

“While the profession appreciates the initial steps offered in this bill, more is needed to adequately serve the vulnerable residents in our nation’s long-term care centers,” AHCA President and CEO Mark Parkinson said in a statement Tuesday.

“The proposal to institute permanent minimum staffing requirements without a permanent funding source would be incredibly challenging for long-term care providers. Providers will not be able to meet staffing requirements if we can’t find people to fill the open positions. There must be a comprehensive approach to staffing beyond just numbers,” he added.

Parkinson added that “with proper funding, providers can offer meaningful jobs with competitive wages and enhance the overall quality of care for residents.”

Smaller facilities?

The legislation also would establish a $1.3 billion skilled nursing facility building modification and staff investment demonstration program. The pilot would provide select SNFs and nursing facilities additional funding to build and pursue resident-centered care approaches. While research has shown small, neighborhood-style nursing homes with private rooms were less vulnerable to deadly COVID outbreaks, many in the industry have argued that there is no viable funding mechanism to pay for construction of such facilities.

State News:
Connecticut - Long-Term Care Facility Staff Must Now Get Vaccinated Against COVID-19
By Angela Fortuna, NBC Connecticut, August 6, 2021

Governor Ned Lamont signed an executive order mandating that all long-term care facility staff members in Connecticut get vaccinated against COVID-19.

This means that staff members at facilities such as nursing homes will have to receive the first dose of the vaccine by no later than Sept. 7, Lamont said.

The governor filed Executive Order No. 13B, which will take effect starting immediately. Anyone who does not comply with the order will subject their respective facility to a $20,000 civil penalty per day, state officials said.

Other long-term care facilities include residential care homes, assisted living services agencies, chronic disease hospitals, managed residential communities, and intermediate care facilities for people with intellectual disabilities.

Connecticut - Health Care Workers Union appears to Support Nursing Home Vaccine Mandate
By Peter Yankowski, Middletown Press, August 9, 2021
The state’s largest union of health care workers on Monday appeared to offer its support after Gov. Ned Lamont issued a vaccine mandate for the state’s nursing home workers last week.

In a statement, the head of SEIU 1199 New England said the union has been encouraging workers to get their shots since last December, when the vaccine first became available.

“The vaccine is an essential tool to protect workers and the people we care for every day,” said Rob Baril, the union’s president. “The Union is working with employers and with the State of Connecticut to make sure vaccination efforts are effective. We are looking into the details of Gov. Ned Lamont’s executive order for further discussions with employers to ensure effective implementation.”

Industry leaders of Connecticut’s long-term care facilities have already lined up to support the
measure, though some have raised concern it could make filling staff shortages harder.

Genesis HealthCare, one of the largest operators of long-term care facilities in the state, had already said it would require workers to be vaccinated, and Massachusetts officials have issued a similar directive to nursing home workers in that state.

Lamont’s order, issued Friday, applies to staff at nursing homes along with other long-term care facilities, including residential care homes, assisted living services agencies, intermediate care facilities for individuals with intellectual disabilities, managed residential communities and chronic disease hospitals.

Washington Governor Orders State Employees, Health Care Workers to Get COVID-19 Vaccine
By Austin Jenkins, OPB, August 9, 2021

With COVID-19 cases once again surging and vaccination rates lagging in many parts of the state, Washington Gov. Jay Inslee on Monday ordered most state employees, as well as workers in private health care, long-term care and congregate settings to get fully vaccinated by October 18 as a condition of employment.

Unlike some other states, the order does not permit employees to opt for regular COVID-19 testing in lieu of getting vaccinated. Inslee’s office said a testing regime would be costly and not effective.

Inslee announced the new requirement at a news conference at Kaiser Permanente in Seattle. He was joined by Seattle Mayor Jenny Durkan and King County Executive Dow Constantine who were also scheduled to announce similar vaccine mandates for their employees, according to the governor’s office.

"We have essentially what is a new virus at our throats, a new virus that is twice as transmittable and is causing an explosion of this dread disease in the state of Washington," Inslee said during the outdoor news conference. He added that COVID-19 is now "a disease of those who have not been vaccinated."
The statewide order applies to anyone employed by a cabinet level agency, including the Department of Social and Health Services, the Department of Corrections and the Department of Veterans Affairs, which all operate congregate facilities and where staff vaccination rates have lagged.

Inslee's order is among the most sweeping and stringent in the nation and largely mirrors the requirements imposed in recent weeks in California. Other states with vaccine mandates include New York, Virginia and Hawaii. Last week, Oregon Gov. Kate Brown ordered health care workers to submit to weekly COVID-19 testing starting September 30, unless they show proof of vaccination.

The U.S. Department of Veterans Affairs and many private employers, including Microsoft, have issued vaccine mandates. The Pentagon is also expected to issue similar requirements for military personnel.

At the same time, at least nine states have enacted bans on vaccine mandates, according to NPR.

Delaware - Gov. Carney Announces Vaccination Requirements for Healthcare Employees
By Sarah Ash, WMDT-47 News, August 12, 2021

Governor John Carney and the Delaware Department of Health and Social Services have announced that starting September 30, staff in long-term care and other health facilities will be required to provide proof of vaccination or undergo regular testing for COVID-19.This requirement will be formalized by the end of this month and will cover the following:

  • Long Term Care Facilities – nursing homes, assisted-living facilities, immediate-care facility for persons with developmental or intellectual disabilities, neighborhood homes, group homes for persons with serious and persistent mental illness, group homes for persons with HIV/AIDS, family care homes, rest residential facilities, intensive behavioral support and educational residences

  • Acute and Outpatient Providers –  adult day cares, free-standing birthing centers, free-standing emergency departments, free-standing surgical centers, home health agencies (aide only – non-skilled), skilled home health agencies, hospitals, prescribed pediatric extended care centers, hospice, personal assistance service agencies, office-based surgery

“There’s no better way to protect our most vulnerable neighbors from this virus than getting the COVID-19 vaccine,” said Governor Carney. “If you haven’t gotten your COVID-19 vaccine yet, consider it. Vaccination is how we’ll make sure our communities get healthier and continue to build a great future in our state.”

Arizona - Expanded Silver Alert System Helps those with Developmental Disabilities
By Gianluca D’Elia, Cronkite News August 6, 2021
Cynthia Macluskie has memories of her 3-year-old son sneaking out of their Cave Creek home late at night, while she was asleep. “At 6 o’clock in the morning, someone’s banging on my door. … I still get goosebumps from this,” she said, looking down at her arm during an interview.

A couple who’d woken up early for work found her son, Mark, and the Macluskies’ dog playing near a ravine, and the family’s address was on the dog’s collar.

That was more than 20 years ago. But Macluskie, vice president of the Autism Society of Greater Phoenix, said she knows other families might not be as lucky as she was that night when a loved one with a disability goes missing.

Mark was engaging in a behavior that’s common among youngsters on the autism spectrum: wandering or elopement – a tendency to run off from a safe area or caregiver. Research shows it’s common in about half of youth on the spectrum; 1 in 4 children are missing long enough to cause concern and are most in danger of drowning or traffic injuries.

“I think that happens more than we hear reported because people are embarrassed. They don’t want to admit that it happened,” said Macluskie, who shares her story as a cautionary tale. “That took a lot of ingenuity for him to get out of our house. He was pretty fast and pretty smart about it.”
In 2018, after lobbying from Macluskie and others in the autism community, Arizona took a step to help address the problem.

The Arizona Legislature expanded the criteria for the state’s Silver Alert public notification system to include those with intellectual or developmental disabilities. It was previously intended for missing seniors with Alzheimer’s disease or dementia.

Municipal police departments are able to request a Silver Alert from the Arizona Department of Public Safety after they’ve exhausted all available resources, such as distributing missing person flyers, contacting family and friends, and checking area hospitals and jails.

Similar to the way an Amber Alert notifies the public about child abductions, Silver Alerts allow DPS to reach more people via phone notifications, broadcast alerts on TV and radio, and highway signs.

Three years after the program was expanded, Macluskie and other advocates say they’re confident the change was worth it.

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