November 19, 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
Giving Thanks

VOR wishes you all a very Happy Thanksgiving, and would like to express our gratitude to all of our members and supporters for your generosity, your encouragement, and your participation throughout this year, and throughout the past 38 years.

Together, we have saved lives, protected the most vulnerable, and helped preserve Choice and a Full Continuum of Care.

We continue to count our blessings.
VOR's 2021 Year-end Giving Campaign

Act Now to Double Your Donation!
We have great news! A family group that has been a long-time supporter of VOR has made a generous offer - they are willing to match dollar for dollar the first $5,000 of donations received between now and Thanksgiving!

This gives us all a great opportunity to reciprocate their kindness. Let's make sure that we can meet, and exceed, this goal for the next two weeks. Any donations made online or postmarked on or before November 25th will qualify for this match!

So don't delay! Help us to start off our Year-end Giving Campaign with a gift of gratitude. And let's all share in this very Happy Thanksgiving together!
National News: Build Back Better Act
House Democrats Pass Build Back Better Act

On Thursday, the Congressional Budget Office released its scoring of the House version of the Build Back Better Act. While most of the provisions were close to the Biden Administration's estimates, the CBO acknowledged that health care provisions, notably the funds allocated to people HCBS services for people with I/DD, would raise the deficit by $150 billion.

This morning, the House passed the bill with a narrow 220-213 vote that ran mostly along party lines. One Democrat strayed and voted against the bill. The bill now goes to the Senate, where it is expected to undergo substantial changes over the next few months, before returning to the House, if and when the Senate can reach agreement and pass it by a simple majority under reconciliation.

As it stands, the House bill will provide $150 billion to Home and Community-Based Services. No similar funding was written into the bill for ICFs, though they may be eligible for a small share of a $1.6 billion grant for which states may apply and appropriate to ICFs, nursing homes, skilled nursing facilities, assisted living facilities, hospice care, and/or Home and Community-Based Services. The House bill also offers grants to states that would like to develop programs for people who wish to engage in Competitive Integrated Employment, provided they agree to phase out (eliminate) programs that offer employment opportunities to people with I/DD who are unable or unlikely to participate in competitive employment. The House bill goes on to endorse the permanent re-authorization of the Money Follows the Person Rebalancing Act, which has been used to close ICFs and eliminate choice in states that have chosen to privatize their services.

While VOR supports funding for people receiving services through HCBS programs, we remain steadfast in our conviction that all people with I/DD and their caregivers deserve equitable funding increases. The House bill VOR continues to work with our allies in several national advocacy groups and with offices of members of the Senate to attempt to get parity for ICFs and to have the provisions that tie state grants for competitiive integrated employment to pledges to eliminate vocational opportunities that are afforded people with I/DD through special wage certificates though Section 14(c) of the Fair Labor Standards Act of 1938. Though unlikely, we continue to press for hearings on the effects of Money Follows the Person on damaging the ICF component of Medicaid and eliminating choice before it is granted permanent re-authorization.

The reconciliation process will be delayed by other Congressional deadlines,as  both the House and the Senate will be facing deadlines for addressing government funding (December 3rd) and the debt ceiling (probably December 15th).

Our friends at Health Policy Source have provided a handy recap of the health policy provisions. The document may be downloaded here. (Note: We have highlighted some of the items of interest to VOR members.)

Cost estimates from the Congressional Budget Office may be found here

(For those who have access to the New York Times, the article below offers an interesting look at how funds may be allocated for programs in the House bill.)

More information may be found on our web site at
Everything in the House Democrats’ Budget Bill
By Alicia Parlapiano and Quoctrung Bui, New York Times, November 18, 2021

After months of negotiations, House Democrats voted to pass a sprawling bill that would fulfill a large part of President Biden's agenda on climate change and the social safety net. It would be paid for mostly through higher taxes on the wealthy and on corporations.

[Our interactive table], based on estimates released by the Congressional Budget Office this week, includes nearly every provision in the package, and when policies would expire. The spending and tax cuts add up to about $2 trillion over 10 years, but budget experts say the true cost will be much higher if shortened programs are extended as many Democrats anticipate.

The bill is expected to change in the Senate to gain the support of all 50 Democrats and comply with a review by the Senate parliamentarian.

Other National News:
Guaranteeing Integrated Care for Dual Eligible Individuals
By Katherine Hayes, G. William Hoagland, Lisa Harootunian, Eleni Salyers, and Brian O’Gara, Bipartisan Policy Center, November 18,2021

In July 2020, BPC released a report urging integration of Medicare and Medicaid services for all individuals who are eligible for both programs (commonly referred to as dual eligible individuals). In that report, BPC recommended that Congress and the U.S. Department of Health and Human Services (HHS) provide incentives to states to integrate care for this population, including technical assistance and financial resources. The report also recommended a federal “fallback” program for states that choose not to integrate care.

Why Federal Action is Needed
When Medicare and Medicaid services are not integrated, dual eligible individuals must navigate separate programs to receive health care, long-term services and supports, and other services. In states that contract with managed care plans to deliver Medicaid services, some of which may separately provide, or “carve out,” certain benefits, a dual eligible individual must navigate not only separate programs but also multiple Medicaid plans. Individuals may choose to receive Medicare benefits through managed care or fee-for-service. They may obtain some Medicaid services on a fee-for-service basis but may be required to enroll in one or more Medicaid managed care plans for other services. In extreme cases, a dual eligible individual could be enrolled in five separate programs or plans to get the full range of Medicare and Medicaid benefits. These programs include:
  1. A Medicare Advantage (MA) plan (or fee-for-service Medicare) for Medicare-covered services.
  2. A Medicaid managed care plan for behavioral health services.
  3. A Medicaid managed care plan for dental services.
  4. A Medicaid managed care plan for long-term services and supports
  5. Medicaid fee-for-service or yet another Medicaid managed care plan for health services not covered by Medicare or one of the managed care carve-out plans listed above.
The current system makes it extremely difficult for health care providers to deliver patient-centered care, and incredibly challenging for beneficiaries and their families to navigate care, appeal a coverage decision, or determine who to call for help.

Biden Names Pick For Special Education Chief
By Michelle Diament, Disability Scoop, November 16, 2021

The country may soon see a new top special education official.

President Joe Biden said late last week that he will nominate Glenna Gallo to serve as assistant secretary for special education and rehabilitative services at the U.S. Department of Education.

Gallo is currently the assistant superintendent of special education for the Washington state Office of Superintendent of Public Instruction. Prior to that, Gallo was the state director of special education for the Utah State Board of Education and she worked as a classroom teacher and administrator.

“She has over 25 years of public education experience supporting students with disabilities and adults entering and within the teaching profession, and 16 years of experience in state-level educational leadership with expertise in the improvement planning, data analysis and monitoring of public pre-K-12+ special education programs,” the White House said.

This marks Biden’s first appointment to the post, which is responsible for the federal government’s implementation of the Individuals with Disabilities Education Act and other laws.

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  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:
Missouri to let Intermediate Care Facilities Close Due to Vaccine Mandate
By David A. Lieb, Associated Press, November 12, 2021
The Missouri health department is giving nursing homes a legal pathway to temporarily shut down if they face staffing shortages because of a new mandate from President Joe Biden’s administration for health care workers to be vaccinated against COVID-19.

An emergency rule published Friday from the state Department of Health and Senior Services would allow skilled nursing and intermediate care facilities to close for up to two years, if they are short staffed because of the vaccine requirement. They could then reopen without having to start the licensure process from scratch.

Missouri’s nursing homes have some of the lowest COVID-19 vaccination rates nationally, and the state’s top Republican elected officials have been pushing back against Biden’s vaccine requirements. State Attorney General Eric Schmitt sued this week as part of a coalition of 10 states seeking to block the vaccine mandate.

A federal rule issued last week by the Centers for Medicare & Medicaid Services requires COVID-19 vaccinations for more than 17 million workers in about 76,000 health care facilities and home
health care providers that get federal funding from the two health programs for senior citizens, the disabled and low-income residents. Staff must receive an initial dose by Dec. 6 and complete their vaccination by Jan. 4, unless granted a religious or medical exemption.

When initially announcing the vaccine requirement for nursing home staff in August, the CMS administrator said higher vaccination rates among staff are linked to fewer outbreaks among residents.

The most recent CMS data ranked Missouri last nationally with an average of 56.7% of its health care personnel in nursing homes having completed their COVID-19 vaccinations as of Oct. 31.

Florida - Group Home Closures Forcing Some into the Streets, Nonprofits Say
By Kylie McGivern, ABC Action News, November
Group homes, supporting Floridians with intellectual and developmental disabilities, are struggling to hire staff. Providers are calling it a crisis, with funding from the state among the lowest in the country.

The ABC Action News I-Team found that within the last six months, more than 100 group homes have closed, forcing some residents into the streets.
As advocates and providers push lawmakers for more money to care for some of the state's most vulnerable, the I-Team met with an organization that has served individuals in the Tampa Bay area for nearly 70 years and says its group homes could be next on the list of closures.

The nonprofit PARC, Providing Advocacy and Recognizing Capabilities, in St. Petersburg, provides programs and services to more than 600 children and adults with intellectual and developmental disabilities.

“Although we are almost an invisible population — we’re still here," Brian Rothey, Assistant Vice President of Adult Community Programs said.

Rothey said it's important for people to understand that the people they serve — matter. "The programs and services that they receive — they matter. The staff that come in and work with them every single day — the staff matters," he added.

And that staff is severely underpaid, Rothey said.
The money Florida provides for the care individuals with intellectual and developmental disabilities is among the lowest in the country.

Earlier this year, the Florida legislature made a historic investment in what's known as the iBudget Medicaid Waiver. The move is projected to allow nearly 2,000 people to come off of the state's years-long, 20,000 person waitlist. But that funding increase doesn't tell the whole story.

“What we’re seeing, recently in a pandemic and now coupled with a staffing crisis — we’re not able to bring the staffing in or hire on new individuals to provide these programs and services. So, while it’s great that the state received $96 million to remove individuals off of the waitlist and transition them onto the full Medicaid waiver program, we’re questioning — where’s the staff? Where’s the staffing going to come from?" Rothey said.

The typical wage is $11 an hour.

PARC just recently raised that hourly wage to $13 for group home staff, a move Rothey said, "has had a great impact so far, but it’s also put us at almost a $2 million deficit."

Missouri - ‘Build Back Better’ Funds Could Go to Kansas City’s Vulnerable Citizens
By Russell Colburn, Fox 4 News, November 16, 2021

Workers who care for some of Kansas City’s most vulnerable citizens hope desperately needed funding comes from President Joe Biden’s Build Back Better Act.The nonprofit Life Unlimited is funded by the state of Missouri and matched federally through Medicaid.

It provides long-term in-home care and services to more than 1,000 adults living with disabilities in the Kansas City area. It’s the largest provider in the area.

But, CEO Julie Edlund says these programs have long been underfunded.

“There are 15,000 direct support professionals across the state of Missouri who support people with disabilities,” Edlund said. “Over 50% of those receive public assistance to meet their daily needs, and one in four live below the federal poverty level.”

Edlund said she’s currently down 55 staffers, nearly one-sixth of what would be her total workforce.
Employees are working 80-to-100-hour weeks to make up for it, all for $12 an hour.

The result is a rotating door of people caring for people like 85-year-old, Marvin.

“The work is very rewarding, emotionally,” said team supervisor and healthcare coordinator Kim Boden. “I feel like I have a purpose, and I come to work every day to serve.”

Boden works with Marvin every day.

“These folks deserve the best care that we can give, but we can’t give it to them if we’re burnt out,” Boden said.

New York - New Curriculum Prepares Nurses to Care for Individuals with Developmental Disabilities
St. John Fisher College, via PR Newswire, November 18, 2021

A new and first of its kind curriculum designed for integration into existing primary care nurse practitioner residency programs to improve the health care experience for individuals with intellectual and developmental disabilities (IDD) has been developed by nursing faculty at the Golisano Institute for Developmental Disability Nursing at St. John Fisher College's Wegmans School of Nursing.

The online, modularized curriculum features an in-depth overview of health care topics and best practices in the field of IDD care specifically designed for nurse practitioners engaged in primary care residency programs. The curriculum focuses on practice areas where health outcomes are dramatically different for patients with developmental disabilities such as reproductive health, or where enhanced skills can reduce complications and stress, as in behavioral health. The content, which is divided into five online modules, aims to expand the resident's understanding of attitudinal, communication, policy, programmatic, social, and physical barriers that individuals with IDD encounter in primary care settings. The new curriculum is being piloted in the Primary Care Nurse Practitioner Residency program at Highland Family Medicine, based in Rochester, New York, and will then be distributed to similar residency programs nationwide.

According to Dr. Holly Brown, associate director of the Golisano Institute, the goals of the curriculum are not only better health, better care, and lower costs but also improved knowledge, confidence, and skills for the nurse practitioner. She said that this combination improves the provider's sense of well-being, which is a critical part of maintaining a thriving advanced practice nursing workforce.

"There have been too many situations where a patient with sensory challenges comes into a noisy, chaotic setting and may not react well to being overwhelmed. A nurse practitioner with these essential skills can improve the experience of the health care visit, for instance, by collecting health information and accommodation needs in advance. Nurse practitioners can also be change agents by leveraging existing billing systems to sustain and improve the quality of care for these patients," she explained.

With this new curriculum, the Institute provides an accessible tool for nurse practitioners to address the disparities in health outcomes experienced by individuals with IDD, a group that includes more than 6.5 million people in the United States, according to a 2019 study conducted by the Centers for Disease Control and Prevention. Research has shown that these individuals face a decreased life expectancy due to myriad factors, including a lack of trained health care professionals and reduced access to routine screenings and exams. In addition, patients with IDD often have multiple and complex conditions, such that their care requires additional time that current care provider systems do not often accommodate.

"Primary care nurse practitioners are on the front line of providing care for this population and yet we receive the least amount of training of any health care profession in working with people with IDD," said Brown, who is a psychiatric mental health nurse practitioner in addition to her role at the Institute. "Many skills developed in this program are transferable to our other patients with communication challenges, for instance, older adults with dementia, people who have experienced a stroke, or individuals living with traumatic brain injuries."

Year-End Giving for 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.

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