April 29, 2022
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 & YOU:

Sunday, May 15, 2022
3 - 5 pm EDT / 2 - 4 pm CDT / 1 - 3 pm MDT / Noon - 2 pm PDT
(Nofe: Times have changed from previous announcement)

Meetings w Congressional Offices
Week of May 16 - 20
We will help our participants to arrange their own Zoom meetings with
Congressional Staffers

Debriefing & Feedback Sessions on May 16 & 17,
6:30 - 8 pm EDT

This is a great opportunity to introduce your family to those who represent you in Congress!
This year's initiative will focus on the diversity of individuals within the I/DD population,
the need to ensure parity for all services to meet the needs of all people with I/DD
and to help support Direct Support Professionals in all facilities


Registration is free. Donations are welcome.
You must be a current member of VOR to participate in the Initiative.
(And you must register to receive the Zoom invitation)
National News:
The Private Equity Giant KKR Bought Hundreds Of Homes For People With Disabilities. Some Vulnerable Residents Suffered Abuse And Neglect.
By Kendall Taggart, John Templon, Anthony Cormier, and Jason Leopold, BuzzFeed News, Apr. 25, 2022
BrightSpring Health Services, which KKR bought in 2019, says it helps thousands of people with disabilities “live their best lives.” But a BuzzFeed News investigation found conditions that were often dire, and in some cases fatal.

Over five decades, the private equity giant KKR became famous — or infamous, depending on the observer — for a particular playbook. It acquired iconic companies such as RJR Nabisco, Duracell, and Toys R Us, loaded them up with debt, and sold them off.

In 2019, KKR took on a responsibility that was very different from selling cookies or batteries: caring for thousands of people with severe intellectual or developmental disabilities, some of whom cannot speak, wash, or feed themselves.

With its $1.3 billion purchase of BrightSpring Health Services, one of the nation’s largest group home operators, KKR became the owner of more than 600 residential facilities serving people from California to West Virginia. Many residents have no family to look out for them. Almost all need round-the-clock care. They all depend on the company to keep them safe.

Touting its financial success and BrightSpring’s mission to “help people live their best lives,” KKR has announced plans to take the company public. That development could yield windfall returns for investors and executives.

But a yearlong BuzzFeed News investigation found that KKR focused on expanding the business even as a crisis mounted in its group home division, where conditions grew so dire that nurses and caretakers quit in droves, a state prohibited the company from accepting new residents, and some of the most vulnerable people in its care suffered and died.

Reporters combed through hundreds of state inspection reports, internal company records, photographs, and videos, and conducted more than 170 interviews with regulators, clients’ families, and current and former workers. Again and again, they found residents consigned to live in squalor, denied basic medical care, or all but abandoned.

Overseen by KKR’s handpicked board of directors, BrightSpring executives in many cases kept wages lower than those at competing facilities or Walmarts, despite pleas from local managers that they were unable to safely staff the homes. Some managers resorted to making employees work three days straight or threatening to have them arrested if they tried to leave. In several cases, state inspectors arrived at homes and found no staff at all.

The staffing shortage was compounded by inadequate training and pressure to keep beds full. At least three people died following alarming lapses in their care. One of them died after state authorities warned the company — twice — that she was in danger.

Group homes like these, which mainly rely on Medicaid funding, were designed as a humane alternative to vast state institutions, a way for people with profound needs to get intensive, personalized support. But on a single day at one eight-person BrightSpring home, a resident who had expressed suicidal thoughts swallowed a battery that was supposed to be kept out of her reach. Another resident was left alone in a hot car until his temperature reached 104 degrees. A third nearly died after drinking antifreeze and did not receive medical care for at least nine hours.

At another cluster of homes, inspectors found, staff “failed to administer over 1,000 medication doses,” in part because the KKR-owned pharmacy ran out and the company “failed to obtain these medications from a back-up.”

VOR's Annual Meeting & Legislative Initiate help our families to participate in our organizations, to reach out to their Members of Congress, and to become better advocates for their family members with I/DD.

Those who have attended our June meetings in years past will recall what they spent on transportation to and from D.C... what hotel rooms cost, and what other expenses they incurred while in Washington. We ask that you consider giving a share of that expense, maybe part of the cost of airfare or a night at the Hyatt on Capitol Hill,
or even the cost of a quick lunch in the Longworth Cafeteria!

Any and all contributions will be most graciously accepted.

Please help us to help you.
Please help us to help families like yours.
State News:
Minnesota - State Law Threatens Work Options for People with Disabilities
By Shannon Geisen, Park Rapids Enterprise, April 26, 2022
Specialized work centers around Minnesota, such as the Hubbard County Developmental Achievement Center (DAC), are facing closure or reduced services for people with disabilities.
State legislation threatens to eliminate supported employment programs for those with intellectual and developmental disabilities (I/DD).

On April 22, State Sen. Paul Utke (R-Park Rapids) was recognized for his ongoing efforts to amend the bill during this session.

During the July 2021 special session, language was slipped into the Minnesota Health and Human Services omnibus bill creating a “task force to eliminate subminimum wage law.”

Many disability service providers hold special certificates from the U.S. Department of Labor that exempt them from the federal minimum wage and allow them to pay workers with disabilities based on productivity, instead of a fixed hourly rate.

Specifically known as Section 14c of the Fair Labor Standards Act, it is a highly regulated, licensed program, explains Dawn Kovacovich.
She is a retired special education teacher, a member of the DAC board of directors and a board member of the Federal Coalition for the Preservation of Employment Choice.

Her 30-year-old daughter, Laura, has multiple disabilities, including autism.

Dawn recently co-founded A-Team Minnesota in response to the new Minnesota task force. The A-Team Minnesota is part of a nationwide, nonprofit, grassroots network that advocates for people with disabilities.
Dawn said there are many people, like her daughter, who can’t work in a competitive, integrated work setting due to behavioral, medical, safety or other issues related to their disabilities.
She and others are seeking amendments so the task force focuses on increasing employment opportunities for all people with disabilities, rather than eliminating those choices.
“I love my jobs!” says Laura Kovacovich.

She has worked at the DAC since 2012. Some of her duties are filing office papers, cutting price tags for the thrift store or ripping jeans into long strips that will be woven into rugs. Her main job at the thrift store is to price and shelf items.

At Friday’s presentation, Laura told the crowd, “I have a right to choose where I work.”

She gave Sen. Utke a framed, colored drawing of her weaving rugs at the DAC and thanked him “for protecting my choice to work.”

If places like the DAC are shut down, she worries that “a lot of supervisors won’t understand my disabilities. They won’t know what to do when I become upset.”

“Staying at home is not my choice,” she added.

Minnesota currently employs about 7,000 people – like Laura – under the 14c program.
Oklahoma Parents Speak Out about 13-Year-Long State Waiting List, ‘It’s Shameful’
By Ali Meyer, KFOR News, April 27, 2022
This legislative session, lawmakers have hired a consulting firm to tackle the developmental disability services waiting list.The Medicaid Waiver Waiting List is embarrassingly long in Oklahoma. For the first time ever, the Department of Human Services (DHS) has a plan to eliminate the waiting list that has grown to 13 years long.

For decades, Oklahomans with disabilities were cared for in institutions. Years ago, the state closed those campuses to serve individuals in homes.

But the state doesn’t allocate enough funding to serve all those needs, and so there’s a waiting list.

Oklahomans like Sarah Garrison, 30, are on the waiting list. Garrison has cerebral palsy and intellectual disability.

The Garrisons are native Oklahomans who lived in Indiana for 20 years. In Indiana, state-funded help came over three days a week to bathe and feed and provide personal care needs for Sarah.

Those services were covered because of Sarah’s medicaid waiver. “(Indiana) managed to take care of their citizens like Sarah. I don’t see why Oklahoma can’t do it.,” Barbie Garrison said. “My biggest disappointment in moving back to Oklahoma has been that they just don’t seem to value families who need these services.”
In Oklahoma, Sarah is on a waiting list 13 years long.

Oklahomans who applied for services in November of 2009 are still waiting.

Thousands of Oklahoma families who applied way back then have been waiting years and years.

In the past 10 years, the State Legislature has added $1 or $2 million a year each year to help shorten the waiting list. But it’s not enough.

“The department has never been in a position where they believe that total elimination was within reach,” said Samantha Galloway, Deputy Director and Chief of Staff and Operations of Oklahoma Human Services. “And for the first time, we absolutely believe total elimination is within reach this year.”

The DHS has asked the legislature for $21.3 million to eliminate the Medicaid Waiver Waiting List and serve all Oklahoman who quality for services.
Connecticut - A CT Group Home Director wants to Cash In on her State-Funded Properties
By Andrew Brown, CT Mirror, April 24, 2022
For nearly four decades, Malcolm and Margaret Winkley have run a pair of nonprofits in Connecticut that serve individuals with developmental disabilities.

And over the course of those 40 years, the husband and wife used their authority over the two organizations — and the taxpayer money they received — to amass millions of dollars’ worth of real estate.

As the founders and directors of Brian House Inc. and Adult Vocational Programs Inc., the couple helped decide where to house dozens of people who were in the nonprofits’ care, and they frequently arranged for those individuals to move into group homes they personally owned.

Between 1983 and 1990, the Winkleys licensed eight different houses along the lower Connecticut River Valley. Audits, contracts and other records show the couple held the titles for those group homes, while the nonprofits used state and federal funding to pay the taxes, insurance and mortgages on those properties.

That arrangement was specifically called out in an ethics opinion in 1999. State officials ruled the setup was a “direct conflict of interest” under Connecticut’s laws, and they argued it allowed the couple to use their authority over the nonprofits “for their own financial gain.”
Even so, state officials never required the Winkleys to change the ownership structure for the group homes, and they allowed the couple to retain control of the properties as the state paid off all of their mortgage loans.

Now, as Margaret Winkley prepares for retirement, she is looking to cash in on those taxpayer-funded investments by selling off the homes and other related properites.

State lawmakers and disability advocates are confused about why the state allowed the Winkleys to personally own the properties for decades, and they are deeply concerned about how a potential sale could affect the people who are currently living in the group homes.

Rep. Michelle Cook, who has been a member of the Connecticut Legislature's Human Services Committee for 14 years, called the Winkleys' ownership of the homes "extremely problematic."

"We, as a state government, should not be in the business of allowing folks to profit in the millions like this," said Cook, D-Torrington. "That is just unconscionable to me when you recognize that all of the folks in these homes could feasibly be on the street if they are not successful in relocating them."
Iowa - Local Leaders say Closure of the Glenwood Resource Center will Change the Makeup of their Community
By Kendall Crawford, Iowa Public Radio, April 26, 2022
With the Glenwood Resource Center slated to close in 2024, local officials are concerned about the gap it will leave in the southwest Iowa community.

The state-run center for people with severe intellectual disabilities has been in Glenwood for over 150 years – first opening as an orphanage and then transitioning to a care center. It is Mills County’s largest employer, providing more than 500 jobs to Glenwood-area residents.

Glenwood’s mayor Ron Kohn said he believes its closure could lead to many of its families and employees looking to new communities for support and jobs. He said it would be hard to see the relocation of so many of the communities’ families.

“It's very unfortunate for our community because many of these people have contributed a great deal in our various organizations over the years and so they're important,” Kohn said. “But we understand that their family must come first.”

Kohn said he foresees many of Glenwood’s employees will have to look to other communities for similar positions. He said he’s hopeful the state will provide retraining for those employees who want to stay in the county.
“The possibility of a similar job opening up is not very likely,” Kohn said. “And so that presents a seriously challenging environment for them to decide what their future is going to hold.”

Glenwood Community School District Superintendent Devin Embray said he’s concerned about the families who will be impacted by the facility’s closure. He said it will be important for the community and state to focus on easing their transition.

Embray said the school district could lose anywhere between 50 to 150 students if those with ties to the facility decide they need to relocate.

“My first thought goes to the families and what we can do for them in retraining anybody,” he said.
“We would want to keep as many families as possible in our area, so it wouldn't impact the school in a negative way, nor our communities in a negative way.”
New Jersey - Shortage of Aides Hurts Quality of Life for Disabled NJ Residents
By Gene Myers, North Jersey dot com, April 29, 2022
Advocates for New Jerseyans with disabilities and lawmakers from both sides of the aisle continued their push this week for higher wages for the home health aides who make daily life possible for some of the state’s most medically fragile residents. 

During Wednesday's Department of Human Services budget hearing, Assemblywoman Carol Murphy, D-Burlington, said she has been “bombarded” by families pleading for help as staff shortages affect quality of life for thousands of state residents with developmental disabilities. 

Murphy used the hearing to rally support for home aides — known in the industry as direct support professionals, or DSPs — who assist with daily needs, including bathing, clothing and feeding around the clock. It’s a grueling task for which they are underpaid, advocates said. 

The state has approved three rate increases for the aides since 2019, and another is planned for January 2023. All four totaled will account for an additional $4.75 per hour for each worker, bringing the current median wage to $17.86 an hour, according to the state.

"These investments are moving the needle. In the latest national survey of DSP wages, New Jersey is among the top five states for DSP pay and among the top three states with the lowest turnover rates," said DHS commissioner Sarah Adelman in an emailed statement.
But advocates and families said more needs to be done.

Average wages for the aides fall below federal poverty levels, and most staffers work two or three jobs, according to the most recent report from 2017 to the U.S. president on “America’s Direct Support Workforce Crisis.”

The system has long been under strain with the low pay and long hours that caused a high turnover rate even before the pandemic. The current shortage of workers has exacerbated the problem.

Trips into communities are halted, as are therapy and other essential services. Even trips home to see family have slowed because of the staffing crisis.

Catherine Chin is the executive director of the Alliance for the Betterment of Citizens with Disabilities, a trade group for the companies that run homes and day programs. She surveys the companies monthly and said day programs are operating at 62% of pre-pandemic levels, primarily because of the shortage in staffing. She said about 21% of people in the community are stuck at home rather than taking part in the programs they rely on.
Massachusetts - House Leadership Rejects Budget Amendment to Raise Direct Care Wages
By David Kassel, The COFAR Blog, April 28, 2022

Despite support from well over a majority of the Massachusetts House of Representatives for a state budget amendment that would raise wages of direct care workers in the Department of Developmental Services (DDS) system, the amendment was rejected on Tuesday (April 26) by House leaders.

Debate concluded yesterday (April 27) in the House on a $49.7 billion state budget for Fiscal Year 2023, which begins on July 1. The budget legislation now goes to the Senate Ways and Means Committee.
Amendment 788 to the House budget bill would have required that 75% of funding in a reserve account for state payments to corporate human services providers go toward boosting wages for their direct care workers.

As COFAR has recently reported, low pay has become a recognized cause of staffing shortages in the state’s human services system. COFAR has called for a minimum wage for direct care workers in the DDS system of $25 per hour. Right now, the average hourly rate for these workers appears to be $16 or possibly even less.

In January, Governor Baker had proposed placing $230 million in the provider reserve account, an amount almost three times the size of the account’s current-year funding. Amendment 788 would have required that 75% of the account, or some $173 million, be used to boost direct care wages.

However, the budget process in Massachusetts does not generally allow for votes in the House on individual amendments. Instead, legislative leaders, including the House speaker and the chair of the House Ways and Means Committee, appear to make the decisions as to which amendments survive and which fail.

In other words, rank-and-file legislators are allowed to vote only on “consolidated amendments,” which are bundles of individually proposed amendments that have been deemed acceptable by the leadership. In this case, the language of Amendment 788 was not accepted into a consolidated amendment.
VOR's Annual Membership Meeting

Celebrate VOR's 39th Year of Family Advocacy

Sunday, June 12, 2022
On Zoom

Guest Speakers:
  • Jill Escher - President, National Council on Severe Autism; Escher Fund for Autism, Past President of the Autism Society San Francisco Bay Area
  • Kit Brewer - Executive Director, Project CU - St. Louis, MO; Director, Coalition for the Preservation of Employment Choice (formerly the Coalition for the Preservation of 14c)
  • Micki Edelsohn - Founder, Homes For Life; Author, “Mom with a Megaphone”

Reports from the States!
Family Networking Meeting!
Our World Renowned Cakeless Bake Sale!

As in previous years, the Annual Meeting will feature an open meeting of the VOR Board of Directors and we will reveal the results of the current Board elections.

Registration for the Annual Meeting will open in May.
Help Us Help:
Shop at Amazon?

Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to smile.amazon.com instead of the regular Amazon site, and sign in with your account credentials.
  2. Amazon should then give you a prompt to Select A Charity.
  3. Type into the search box: VOR - Elk Grove Village and click on the Select button.
  4. Now, bookmark the Amazon Smile page and paste it into your Bookmarks Toolbar, so that every time you go to Amazon, you go through the SMILE portal.
Families of individuals with severe/profound intellectual and developmental disabilities and autism need a voice in Washington, D.C.

For 39 Years, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we engaged in over sixty meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.
VOR Bill Watch:
[Please click on blue link to view information about the bill]

VOR SUPPORTS:

Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.
H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

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.


VOR OPPOSES:

S. 3417 - The Latonya Reeves Freedom Act of 2021 - This bill may be seen as the offspring of the Disability Integration Act from the 116th Congress. It misrepresents Olmstead, and contains provisions that would be harmful to the existence of ICFs, including a section that would promote lawsuits against larger congregate care facilities.

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 & S. 3238 - 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.

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.
Direct Support Professionals:
VOR ❤️s OUR 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]
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Toll Free: 877-399-4867 Fax: 877-866-8377