October 1, 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 & YOU: Happy October!

The days are getting shorter, there's a crispness in the air, leaves are turning,
and it's time for

VOR's Annual Fall Membership Drive!

Simply put, we hope to increase our membership rolls over the next few months.
Please help us to amplify our voices, to help us to better help you.

Now is the time to reach out to friends, family, and members of your community and
ask for their support.
National News:
Note: Congress continues to work on the Build Back Better reconciliation bill, and VOR and other organizations continue to advocate for parity for ICFs in the bill. We are also reaching out to Members of Congress in hopes of removing any provisions that would eliminate employment opportunities for people with I/DD in sheltered workshops or phase out 14(c) wage certificates.

Stay tuned.

If you would like to sort through the reconciliation bill, you may download a copy HERE

Meanwhile, the crisis-level shortage of Direct Support Professionals continues to dominate the news in the I/DD, autism, and aging communities.
Survey Finds Disability Service Providers On The Brink
By Michelle Diament, Disability Scoop, October 1, 2021
Disability service providers across the nation are in crisis, with a majority reporting that they’re shutting down programs, turning away new referrals and struggling to maintain standards.

A survey out this week of 449 organizations that provide services to those with intellectual and developmental disabilities paints a dark picture of the current state of the industry a year and a half into the COVID-19 pandemic.

Of those surveyed, 58% of providers said they’re discontinuing programs or services, 77% are turning away new referrals, 84% are delaying the launch of new offerings and 81% said they are struggling to achieve quality standards. Meanwhile, 40% of providers said they’re seeing higher frequencies of reportable incidents.

[W]e are actually going backwards,” said Barbara Merrill, CEO of the American Network of Community Options and Resources, or ANCOR.
The organization, which represents disability service providers across the nation, conducted the survey during a five-week period starting in August.

“Programs are being closed, people aren’t taking new referrals. We’re getting concerned that people are going to be moved to larger settings. We’ve never seen anything like it,” Merrill said.

Insufficient staffing is at the root of most of the problems providers are experiencing, according to the ANCOR report. The industry has long
struggled to attract and retain direct support professionals, but that situation has only gotten worse. Nearly 93% of providers surveyed said that “industries that previously paid comparable wages now pay employees more than my organization can afford to pay” while 86.2% said that the pay for direct support professionals is less than what people can receive from unemployment and other government safety net programs.

And there’s not much that providers can do about the situation since their pay rates are largely determined by the reimbursement they receive from Medicaid.

As a result, the disability service provider industry is “extraordinarily fragile and beginning to break down,” Merrill said, and that means families and people with disabilities aren’t getting what they need.

“Services aren’t being staffed at the levels that they need to be staffed to be safe and to allow people to experience the community,” Merrill said. “We’re concerned about basic human safety here. That’s why providers are moving to close and consolidate programs. They’re not going to run programs where people aren’t safe.”

Long Hours, Low Pay, Loneliness and a Booming Industry
By Liz Donovan and Muriel Alarcón, New York Times, September 25, 2021

For 15 years, Yvette Dessin spent long work days with her elderly patients, accompanying them on walks, cooking them meals and bathing those who needed that most intimate kind of care. If a patient died, Ms. Dessin and her adult daughter attended the funeral services to pay their respects.
Ms. Dessin worked up to 60 hours a week as a home health aide, her daughter said, making minimum wage. She often worried about being able to pay the mortgage on her Queens home. She was one of roughly 2.4 million home care workers in the United States — most of them low-income women of color and many of them immigrants — who assist elderly or disabled patients in private residences or group homes.

The industry is in the midst of enormous growth. By 2030, 21 percent of the American population will be at the retirement age, up from 15 percent in 2014, and older adults have long been moving away from institutionalized care. In a 2018 AARP survey, 76 percent of those ages 50 and older said they preferred to remain in their current residence as they age. In 2019, national spending on home health care reached a high of $113.5 billion, a 40 percent increase from 2013, according to the most recent data from the Centers for Medicare and Medicaid Services.

The ranks of home care aides are expected to grow by more than those of any other job in the next decade, according to the Bureau of Labor Statistics. It’s also among the lowest paying occupations on the list.

Nearly one in five aides lives below the poverty line. In six states, the average hourly wage for home care aides is less than $11, and nationally, the median pay has increased just $1.75 an hour over the last decade, when adjusted for inflation.

Much of the aides’ low wages are paid for with taxpayer dollars — about two-thirds of home care revenue is through public programs, primarily Medicaid, according to the nonprofit PHI, which monitors the eldercare work force. The state and the federal government — and sometimes the local municipality — split the cost of Medicaid, which makes for varying rules from state to state, including on what services home health aides can provide.

State News: Crises
Ohio - Developmental Disability Services Facing ‘Crisis’ Labor Shortage
By London Bishop, Dayton Daily News, September 25, 2021
Exacerbated by the pandemic, and years of fewer hires, developmental disability services across the nation are facing a labor shortage of crisis magnitude, health professionals say.

The lack of direct support professionals, or those who work with people with developmental disabilities, is being seen in Greene County and other local counties.

“It’s been called a crisis, but it’s really a systems failure. It’s becoming to the point where it’s unmanageable,” said Mark Schlater, CEO of Towards Independence in Xenia.

Managers at the Greene County Board of Developmental Disabilities say the state has taken strides to rectify the issue, but many issues remain.

“There are fears and frustrations over ‘how are we going to cover the shifts that we need to cover?’ We’ve had to get creative in how we can help in other ways,” said Provider Support Manager Sarah Combs. “The people that are doing what they’re doing are incredible. We just need more of them.”

“Most providers in Ohio are not taking on new business. We’re seeing more and more providers in Ohio turning down people for services because they don’t have enough staff,” he said.

As of Sept. 8, 1,822 people are on the waiting list for community or home-based service waivers in the state of Ohio, over half of whom are under the age of 21. More than likely, the waiting list is going to get longer.

The state has taken steps to address the problem.
On Sept. 21, the Ohio Department of Developmental Disabilities announced that it would waive the requirement that direct support professionals need a high school diploma or GED through Sept. 30, and temporarily allow 16 and 17-year-olds to be hired. Minor employees perform more limited duties, cannot administer medication, and must work with another direct support professional, but state officials say this measure will attract more candidates to an industry stretched thin.

Despite this, major problems remain with the push to hire and retain employees. Agencies are currently struggling to provide competitive pay, and while private businesses can raise wages to address the worker shortage, direct support organizations can’t.

“Other businesses can modify their hours, cut back on services, but we can’t do that,” Schlater said. “Lives are at stake here.”

“The rate that they get is set in rule,” Combs said. “An agency is given a unit rate for the service, and then they pay DSPs based on that. There’s a very slight margin with operating costs.”

“The state matches federal dollars, but the state of Ohio sets those rates,” Schlater said. “We’re seeing more and more companies spending above what they’re getting reimbursed for. It’s a pending disaster.”

Starting pay for support workers starts at $13 per hour. Kelly Bergstrom, a senior services manager for Graceworks Enhanced Living, says in a perfect world, her dedicated workers would be getting twice that.

Missouri - ‘Really Good People Leave’: Low Wages, Hard Work Drive Out Caregivers for Disabled
By Colleen Schrappen, St. Louis Post-Dispatch, September 27, 2021
Someone is with Maria Fields seven days a week, from 6 in the morning until 10 at night. They visit the park with her, take her to the doctor and make her favorite PBJs for lunch.

Maria is 34, blind and has autism. It takes a team of special workers rotating through parents Beverly and Carl Fields’ home in Florissant to care for her. And it’s getting increasingly difficult to find team members.

“We’ve seen some really good people leave,” said Beverly Fields. “And they wanted to stay. It breaks my heart when someone leaves Maria. She is very emotionally attached to her staff.”
Low pay and high demands fuel a worker churn that leave nonprofits and families in a constant cycle of hiring, training and forming new relationships.

Maria is minimally verbal and needs help with daily tasks most people take for granted: using the bathroom, getting dressed, eating a snack. A 2-inch binder is packed with her medical information, schedules and behavior interventions.

Georgia’s Disability Support Staffing Shortage now at ‘Epic Proportions’
By Jill Nolin, Georgia Recorder, September 29, 2021

As a nurse working at a metro Atlanta hospital, Becky Turner is part of a workforce experiencing well-known staffing shortages as the pandemic persists.

But as the sister of a 58-year-old woman with Down Syndrome and Alzheimer’s Disease who uses a wheelchair, the Lawrenceville resident and her family are also at the mercy of another workforce crisis that is unfolding more quietly in homes and at facilities serving people with disabilities.

Turner’s sister, Gretta, lives with her in a basement apartment and receives services at home through Medicaid.

“We promised – me and my sister – our parents that we would always take care of her, that she would never have to go into a home,” Turner said.

Gretta, though, needs constant supervision. So, when Turner leaves for a long weekend shift at the hospital, she relies on the assistance of workers known as direct-support professionals to come care for her sister.

Those workers have become increasingly scarce during the COVID-19 pandemic as they risk exposure to the coronavirus and as less-stressful jobs at stores like Target and some fast-food restaurants offer higher pay.

The staffing shortage has left Turner scrambling at times to make last-minute arrangements with family to care for Gretta. When she cannot find someone, she is left with no choice but to call into work so she can stay with her.

Turner has called into work three times lately, which she knows puts the hospital and her exhausted colleagues in a bind. Likely, someone else is paid overtime to cover for her.

“This costs the hospital money, it’s an inconvenience for the other people, and then, you know, I’m just eaten up with guilt and feel terrible,” Turner said. “But I feel like I have no control.”

Admission Holds Up to 60% of SNFs for Oklahoma Operator
By Alex Zorn, Skilled Nursing News, September 26, 2021

Despite seeing adequate census to remain open, Medford-Okla.-based Servant Living Center, owned by the Diakonos Group, was forced to close earlier this year due to not having enough staffing to take care of its residents.

Diakonos Group CEO and President Scott Pilgrim hopes it will be the only one of his facilities that will close due to staffing challenges, but worries what the current shortage could mean for the rest of the state.

Diakonos Group currently operates nine skilled nursing and rehabilitation facilities, three assisted living communities, one independent living community and three intermediate care facilities, according to its website.

With admission holds at 60% of his facilities, Pilgrim thinks it’s time for the federal government to step up to better support SNFs. The release of the Provider Relief Fund will help “temporarily,” but Pilgrim wants to see more long-term commitments in the way of Medicaid reimbursement increases.

State News: Solutions
Colorado - "This Increase is Absolutely Amazing:" Caregivers Rejoice over $15 Minimum Wage
By Mayo Davison, KOAA News, September 30, 2021

Some frontline workers who care for aging adults and people with disabilities will get a pay raise next year.

The state Joint Budget Committee voted 5-1 to approve a minimum wage of $15 per hour for direct care workers funded with any state dollars working in-home and community-based settings. This applies to personal care workers, homemakers, direct support professionals, and others.

"I'm happy about it because we do deserve the pay for the type of work that we do because we are caring for individuals," said Erin Taylor.

Taylor has been a caregiver for the past five years.

"I enjoy helping others and keeping their independence," said Taylor. "When I started getting into caregiving, the pay was pretty low. This increase is going to be absolutely amazing and it may help other people get into caregiving."

She says the increase makes her feel appreciated for the hard work she does.

"When there is pay, but also incentives like pizza parties, gift cards, and vaccination things," said Taylor.
“Every Coloradan should be able to live and enjoy the Colorado we love and I’m proud that we’re taking care of those who take care of our loved ones. Colorado has one of the fastest-growing aging populations in the country so making sure we can hire and retain caregivers is important for today and for years to come. In Colorado, we value our workers so I fully support moving to a $15 minimum wage for caregivers,” said Governor Jared Polis.

National data shows turnover for the direct care workforce is 82 percent.

"It is low wages, can be difficult work in terms of physical and emotional, and trying to meet people wherever they are at," said Bonnie Silva, Colorado Department of Health Care Policy and Financing.
The department has been trying to figure out new ways to retain and attract workers, which includes utilizing American Rescue Plan Act funds.

"We were able to craft a plan, it is a $530 million plan to invest in our system and support these workers. Out of this $530 million plan, we are directing $280 million toward the workforce, and out of that $280 million, we are directing $260 million to wages and rate increases," said Silva. "Coupled with that, we provided some rate increases to providers so they can look at compression pay. We know there are variances in regards to tenure."

Connecticut - One Group Home Settles with 1199; Two More Face Strikes
By Mark Pazniokas, CT Mirror, September 29, 2021
The union representing low-wage caregivers at private, non-profit group homes for the intellectually disabled in Connecticut struck a deal Wednesday with one owner and issued strike notices for two others.
District 1199 New England, an SEIU affiliate, said the contract settled with Network Inc., which operates 26 group homes in the state, provides unprecedented raises and retirement and health benefits that the union hopes will become an industry template.

The new deal and strike threats come as District 1199 tries to finalize how its members will share in the $184 million the state reserved in June to reward underpaid group home workers who risked their health during the pandemic.

“Some of our members have waited over 15 years to get compensated with wages and benefits that truly reward their hard work,” said Rob Baril, the union president. “This contract sets a high bar for other operators to come to the table and give workers a fair chance to improve our lives.” 

Network and another provider, Whole Life, were facing strikes on Oct. 5. Baril said Whole Life still faces a walkout on Oct. 5 and the union has called strikes at 6 a.m. Oct. 12 against two others, Alternative Services and Sunrise Northeast.

Overall, the union represents 3,000 workers at group homes that are owned by 20 non-profit agencies that heavily rely on Medicaid reimbursements set by the state.

“The state, frankly, did its job. They stepped up to the plate and provided the industry with $184 million,” Baril said. “The agencies have to submit to the state what their costs needs are.”

For non-union homes, that is wholly under the control of the owners. In the union homes, that means negotiating over wages and benefits for work forces that are nearly all female and heavily minority.
“You’ve got employees who have 15 years of experience, 20 years of experience, 25 years of experience, were making 16, 17, 18 dollars an hour,” Baril said.

Whole Life operates 38 homes in Connecticut, while Sunrise has 30 and Alternative Services has 18.
Strike votes are underway at other homes represented by the union.

“A year ago, we began fighting around the concept of a long term care workers bill of rights that would create a minimum standard of $20 an hour over time, access to health insurance for all and retirement security for all,” Baril said.

The contract settled Wednesday provides starting wages of $16.50 this year and $17.25 next, with raises of up to 5% for others based on seniority. It creates a defined benefit retirement plan and significantly cuts employee costs for health insurance.

Other State News:
Massachusetts - Opinion: Time to End Virtual Legal Immunity for DDS Nonprofit Providers
By David Kassel, The COFAR Blog, September 27, 2021

Under a state law that is now a half century old, corporate providers to the Department of Developmental Services (DDS) can’t be sued for more than a nominal amount of money even if they are found to be responsible for serious instances of abuse or neglect of their clients.

We think it’s time to change or end the Charitable Immunity Law (M.G.L. c. 231 Section 85K), under which the legal liability of nonprofit organizations in Massachusetts is limited to a maximum of $20,000 in most cases. Very few attorneys will even consider representing clients in cases in which such a low level of allowable damages is allowed.

This situation has contributed to the overall poor quality of care and conditions that is frequently found in group homes in the DDS system.

By way of disclosure, Thomas Frain, COFAR’s president, is an attorney who represents DDS clients. He maintains that raising or eliminating the $20,000 cap would provide an avenue of redress for those clients and their families that isn’t currently available.

“The 300 companies contracting with DDS to care for people with developmental disabilities should be held accountable just like everybody else,” Frain said. “There was a time that these charities got by with bake sales, can drives and private benevolence; but no more. The executives are handsomely paid and should be called to task when they inflict or ignore suffering.”

While states have different standards regarding charitable immunity, Massachusetts is one of the few states left with a charitable immunity statute that imposes such a low cap on liability, Frain said.
We think the $20,000 cap needs either to be significantly raised or eliminated entirely. We support the intent of H.1599, a bill which would eliminate the cap.

Legislation similar to H.1599 has been proposed for many years in the state Legislature. The bill is currently in the Judiciary Committee.

In testimony that we submitted last week to the Judiciary Committee, we noted that unless the chariable immunity cap is raised or eliminated, egregious cases of neglect by nonprofits in the DDS system will continue to go virtually unpunished, creating an enormous accountability problem.

VOR Bill Watch:
[Please 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 - 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.

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?

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