June 25, 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

VOR's Virtual Annual Membership Meeting

June 27, 2021

3:00 pm Eastern, 2:00 pm Central, 1:00 pm Mountain, Noon Pacific

Program to include:
  • Address to Members from VOR's President
  • Report on VOR's 2021 Legislative Initiative
  • Reports from VOR's Finance, Legislative, Issues/Oversight and Quality of Care in the Community Committees
  • Certification of the Election of Directors
  • Ratification of Change to Constitution
  • Guest Speaker - Mary Kay Cowen on the Louisiana Dental Task Force
  • Reports from the States**

(Events and program sequence are subject to change)

National News:
The Political Shuffle - The Better Care Better Jobs Act

*** This is important ***

Earlier this month, VOR's Legislative Initiative discussed issues that were likely to appear in Congress in the coming weeks, in some form or another. In April there had been the HCBS Access Act of 2021 and speculation about what elements of President Biden's American Jobs Plan might be introduced. In what bill might a permanent reauthorization of Money Follows the Person rear its head? Was there any chance that Congress might consider a bill that covered the needs of everyone in the I/DD community, or would they just appropriate funds for Home and Community Based Services as they had in the American Rescue Plan.

We found out yesterday and early this morning. The Better Care Better Jobs Act was introduced in the Senate as S.2210 by Bob Casey, Jr. (D-PA) and in the House as H.R.4131 by Rep. Debbie Dingell (D-MI-12). The Senate bill has 39 cosponsors, all of whom caucus with the Democrats. The House bill only has 3 cosponsors, but one of them is Frank Pallone, Jr. who is the chair of the House Energy and Commerce Committee, and who had been our ally in holding back the Disability Integration Act in the House last year in the 116th Congress.

Not only does this Bill include the permanent reauthorization of MFP, but the main thrust of the bill is to provide $400 Billion in federal funding to support increasing wages for the workforce of Direct Support Professionals (DSPs) in HCBS services only.

What does that mean to us? Privately operated ICFs hire from the same pool of workers as HCBS facilities. If you increase the wages paid to only DSPs in HCBS settings, and keep wages the same in the private ICFs, most of the workforce will gravitate to the significantly better-paying jobs in HCBS facilities, making it almost impossible for them to hire staff. No one wants to do the same job for less money.

There are other provisions in these bills that we would like our members to be more aware of. You can download a synopsis of the bills at:

The text of the bills is available for download at:

And the bills themselves, with full lists of cosponsors, are available at:
The Political Shuffle - Part 2 - Reconciliation

Reconciliation is the means by which a bill may pass in the Senate with a simple majority. Most bills do not pass this way, requiring 60 votes and being subject to filibuster. One President Biden's key policies, the Amecian Jobs Plan, has been essentially cut into two pieces - an infrastructure plan and a jobs plan that would include increasing funding for DSPs, but only in HCBS settings. The Infrastructure bill, the smaller of the two, would have to pass through normal channels. There is a bipartisan group in congress who have worked out a compromise that just might pass, as it provides funding for roads, bridges, and tunnels in every state. The jobs part of the bill, which also includes Democratic Party policies like health care, education, paid family leave, and child care, would go through reconciliation, requiring a simple majority in the Senate. That is not as easy as it might sound, though it requires fewer actual votes in favor of the bill.

Please excuse this gross oversimplification. It's far more complex than that. Read below from The Hill:
Biden Says He Won't Sign Bipartisan Bill Without Reconciliation Bill
By Alex Gangitano and Morgan Chalfant, The Hill, June 24, 2021
President Biden on Thursday said he won’t sign the bipartisan infrastructure deal if Congress doesn’t also pass a reconciliation bill, committing to a dual track system to get both bills passed.

“I expect that in the coming months this summer, before the fiscal year is over, that we will have voted on this bill, the infrastructure bill, as well as voted on the budget resolution. But if only one comes to me, this is the only one that comes to me, I’m not signing it. It’s in tandem,” Biden told reporters at the White House.

Speaker Nancy Pelosi (D-Calif.) said Thursday that the House would not vote on a bipartisan infrastructure bill until the Senate passes a larger set of Democratic priorities through budget reconciliation.

Biden said he agreed with the Speaker on the sequencing.

“The bipartisan bill from the very beginning was understood, there’s going to have to be the second part of it. I’m not just signing the bipartisan bill and forgetting about the rest that I proposed. I proposed a significant piece of legislation in three parts and all three parts are equally important,” the president said.
Still, Democrats will need to convince moderates like Sens. Joe Manchin (D-W.Va.) and Kyrsten Sinema (D-Ariz.) to go along with a big reconciliation bill, which could allow Democrats to pass the rest of their agenda without GOP support.

Senate progressives had already signaled Thursday that they wouldn’t bless the bipartisan infrastructure deal without a major reconciliation package.

Senate Budget Committee Chairman Bernie Sanders (I-Vt.) vowed that there would not be movement on a bipartisan deal unless there is a "firm, absolute agreement" on a reconciliation bill.

Sen. Chris Murphy (D-Conn.) also told reporters he wouldn’t vote for the package without knowing what is in a reconciliation bill.
The comments could also create problems with Republicans who oppose other aspects of Biden's agenda.

State News:
Massachusetts - COFAR and AFSCME Warn that President Biden’s HCBS Expansion Plan Could Harm ICFs
By Dave Kassel, The COFAR Blog, June 21, 2021

COFAR has joined with AFSCME Council 93, a key Massachusetts state employee union, in warning that President Biden’s proposed $400 billion expansion of home and community-based services for people with disabilities and the elderly could pose a threat to the future of state-run services.

In a jointly written letter to U.S. Senator Elizabeth Warren, COFAR President Thomas J. Frain and AFSCME Council 93 Executive Director Mark Bernard expressed overall support for Biden’s proposed expansion of access to affordable home and community-based services (HCBS) for people with I/DD and the elderly.

But the letter noted that Biden’s plan fails to similarly propose any additional funding for state-run Intermediate Care Facilities (ICFs) for persons with I/DD and complex medical needs.

Expanding only HCBS, the letter said, would pose “a serious threat to the future of critically important ICF-level care in this country…(and would) interfere with the ability of individuals, particularly those with severe forms of I/DD, to access the residential settings and programs that meet their needs.”

Biden’s $400 billion HCBS expansion plan is part of his $2 trillion American Jobs Plan, a proposal to Congress to rebuild the American economy and the nation’s infrastructure.

The two remaining state-run ICFs in Massachusetts are the Wrentham Developmental Center and the Hogan Regional Center in Danvers.

Steering increased funding only toward community care would create a strong incentive for Massachusetts to close the Wrentham and Hogan facilities, the AFSCME-COFAR letter stated.

In addition to stripping the DDS system of a badly-needed component of the continuum of care for the developmentally disabled, the closure of the ICFs would jeopardize the jobs of approximately 1,400 union workers represented by AFSCME alone.

Ohio - Disability Rights Group Argues Bill Amendment would Threaten Ability to Investigate Freely
By Bennett Haeberle, WBNS 10, June 23, 2021
The measure would create a legislative committee that could – on a recurring basis – “examine the activities” of Disability Rights Ohio.

Disability Rights Ohio, a nonprofit advocacy group for individuals with disabilities, says a bill floating through the Ohio statehouse could undermine their ability to freely investigate abuse and neglect and advocate for the rights of individuals in certain care facilities.

However, parents of children with disabilities argue the legislative review proposed under an amendment to House Bill 110 is needed because some of the advocacy efforts of Disability Rights Ohio interfere with what parents, guardians – and in some cases the courts – have decided is best for their children with disabilities.

In a statement, Sen. Mark Romanchuk (R-Ontario), who is in favor of the amendment, told 10 Investigates:

“I have heard the concerns of parents and guardians who have raised questions about the process to remove their loved ones from an Intermediate Care Facility without being consulted. Families need to know their voice matters. That is what we are providing, a way to make sure their voices are heard.”

The measure would create a legislative committee that could – on a recurring basis – “examine the activities” of Disability Rights Ohio, which says it has the blessing of the federal government to investigate abuse and neglect allegations independently and interview children or adults with disabilities who reside in facilities where the alleged issues have taken place.
Disability Rights Ohio’s executive director Kerstin Sjoberg told 10 Investigates during an interview Wednesday that:

“The exact language is -- they are going to examine the activities of the protection and advocacy program. And that’s very alarming to us - especially because one of the activities that Sen. Romanchuk is unhappy with is our ability to go in and speak privately and confidentially with people with developmental disabilities who have guardians.”

A parent group says DRO‘s investigations at other intermediate care facilities have been concerning — telling adults with disabilities that they can live outside a facility — what one parent called an overreach.

“Disability Rights Ohio is inserting itself between a parent and a child, between a guardian and their ward and trying to encourage the ward to go against what the guardian has decided is best. That is not investigating abuse and neglect, what that is doing is interfering in the decisions of private Ohioans,” said Caroline Larmann, a parent of children with disabilities.

The bill amendment is currently being considered as part of conference committee talks among lawmakers as the current legislative session winds down.

If it’s approved, Sjoberg said they’ll ask Governor Mike DeWine for a line-item veto.

Connecticut - Home Care Workers Want Fair Pay, But Can’t Strike
By Lisa Backus, CT News Junkie, June 21, 2021
More than 10,000 home care workers represented by the New England Health Care Workers Union, SEIU District 1199 are waiting for negotiations to resume this week with the state for increased pay, health care and a path to retirement.

Negotiations with the state have gone nowhere, according to Diedre Murch, home care director and vice president of the union, despite a federal allocation of $200 million from the American Rescue Plan Act earmarked for community care.
The contract is set to expire on June 30. 

“We need to create a home care system that will professionalize and stabilize the home care workforce,” Murch said. “You can’t do that without living wages and basic benefits like health care.”

The union is negotiating with the Workforce Council acting on behalf of Gov. Ned Lamont and the state Office of Policy and Management. The next negotiation session is slated for June 23, Murch said.

Officials in Lamont’s office and the Office of Policy and Management did not respond to a request for comment on the negotiations.

The workers are hoping that the state will grant them the same benefits that nursing home workers and group home workers were able to secure in recent weeks, Murch and Pedro Zayas, communications director for the union, said. 

The state increased the pay of nursing home workers and group home workers after they threatened to strike.
But the home care workers are in a tougher bargaining position since they cannot strike without leaving their medically and developmentally fragile clients without safe care. They also would have no workplace to picket other than their client’s homes.

The workers want a path to $20 an hour, affordable healthcare, paid sick and vacation time and reasonable retirement benefits, Murch said. The workforce is 80 to 90% female and made up of about 60% people of color.

Many home care workers, who are known as personal care assistants, juggle more than one client and work continuous overtime to make ends meet.

Nicole Bongiovanni, of Madison, is 65-years-old and works 73 hours a week to care for three clients.

Last year she suffered a mild heart attack and had to be hospitalized for three days. She has no idea how she is going to pay her $25,000 medical bill since she cannot afford health insurance which costs $700 a month.

New York - Disability Group Homes At Risk Of COVID Outbreaks As Staff Falls Behind In Vaccination
By Jaclyn Jeffery-Wilensky, Gothamist, June 22, 2021
Workers at group homes for intellectually and developmentally disabled New Yorkers in New York State are falling behind in COVID-19 vaccinations, according to data from the state’s Office for People with Developmental Disabilities.

Residents and staff at these homes were among the first New Yorkers to become eligible back in January. But as of mid-June, just 33% of workers in group homes have received at least one dose.

That’s far below the rate for group home residents—86%—and New York state as a whole, which reached a milestone last week of 70% of adults being partially vaccinated. Mikayla Hoskins, a group home resident and member of the Self-Advocacy Association of New York State, was thrilled to get a COVID-19 vaccine herself. She wants more workers to get inoculated, both so life can get back to normal and staff can be protected from the virus.

“I think it’s very important that staff gets vaccinated because we want them to still be alive,” she said.
While this trend in group homes is on par with the staff vaccination rates of some congregate settings, like prisons, it’s well behind nursing homes where 64% of employees are inoculated, according to data from the New York State Department of Health.
Group home agencies are creating their own pro-vaccine messaging for staff, with some mulling the idea of cash and other incentives. But advocates and experts say the issues underlying low vaccination rates are systemic. Chronic understaffing and low wages drive workers to put in hours of overtime, making it difficult to schedule a period to get the shots and recover from its side effects. And many workers are distrustful of guidance from the state government, which advocates say left them unsupported during the darkest days of the pandemic.

“Why should I trust someone to vaccinate me when they can’t even compensate me or understand that what I do is important?” Yvette Watts, executive director of the New York Association of Emerging and Multicultural Providers, asked during a New York State Senate roundtable about the topic held on June 3rd. “We need those individuals to be vaccinated. But you cannot mandate [it] in individuals that don’t even want to work with you anymore.”

Kansans with Developmental Disabilities Left Waiting Years through Backlog
By Sydnie Holzfaster, Fox 4KC, June 17, 2021
A state-wide backlog is preventing Kansans with disabilities from gaining access to the services they need. 

Johnson County officials estimate over 4,500 people with intellectual and/ or developmental disabilities (I/DD) have been placed on a waiting list to receive Medicaid funded support waivers from the state.

Mandy Flower is the Director of Johnson County Community Developmental Disabilities Organization (CDDO). CDDO is the single point of entry for Johnson County for I/DD services. 

“Currently the waitlist is about a nine-year wait. In Johnson County we have a little over 800 people on that waiting list,” Flower said.

Seth Kilber is an Eligibility Determination Specialist for CDDO. He works directly with families trying to apply for I/DD service funding.

“The hardest conversation I have to have with families is usually about the waiting list,” Kilber said.
Kilber said without financial help from the state, out-of-pocket costs for support services could cost families roughly $50,000 per person each year.

Without continual support, he says many I/DD individuals lose the skills they gain during their time in school.

“It doesn’t make a lot of sense to have people come out of high school at 18 or 21 and have made all this progress through high school but not be able to get into a day program,” Kilber said.

“What ends up happening is we see a lot of regression if they are not able to continue to build on the skills they learned in their high school program. That ends up costing the state money in the long run.”

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


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.

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