June 11, 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:
To Keep Their Son Alive, They Sleep in Shifts. And Hope a Nurse Shows Up.
By Ted Alcorn, New York Times, June 4, 2021
A nursing shortage — driven by the pandemic — has made life miserable for parents with profoundly disabled children. “What if I’m so exhausted that I make a mistake?”.

It was 9 a.m. on a Sunday in May, and Chloe Mead was already worn out.

In her living room, she cradled her 7-year-old son, Henry, supporting his head with one hand and helping him toss a ball with the other, careful not to disturb the ventilator that was keeping him alive. A nearby monitor tracked his blood-oxygen levels and a pump was at the ready should his tracheotomy tube need cleaning. In the corner, her 4-year-old daughter was building a pillow fort.

“I need, like, five extra arms,” she said.

Ordinarily, she wouldn’t be by herself. Since infancy, Henry, who has spinal muscular atrophy, a rare muscle-wasting disorder, has had intensive, round-the-clock nursing at home, with Ms. Mead and her husband serving as fallbacks when a nurse unexpectedly cancels a shift.

But the recent shortage of home-care nurses has forced the couple, who live in Queens, to handle longer and longer periods on their own — as many as 36 hours at a stretch. That morning, her husband, Andy Maskin, was catching up on sleep so he could take that night’s late shift, from 2 a.m. until 7 a.m., when he begins his own workweek.

About 4.5 million Americans with illnesses and disabilities are cared for at home by aides, therapists or nurses. Most of these patients are older, but hundreds of thousands are children with complex health needs, a number that has climbed upward as medical advances allow more to survive into adulthood.

The families of these children have long struggled to find skilled help, but many say Covid-19 has made an already untenable situation even worse. Nurses left the work force to care for their own out-of-school children, or abandoned the profession permanently. And the surging demand for personnel at hospitals, testing sites and vaccination centers drew nurses away with as much as double the wages they earn caring for patients at home.

The easing of the pandemic may not improve conditions much. The shortage of nurses is longstanding and in the wake of a public health crisis that prompted 29 percent of health care workers to consider leaving the profession, many expect a wave of retirements.

“This is as bad as it’s ever been,” said Liz Wise, who works for the nationwide nonprofit Bayada Home Health Care, helping transition young patients from hospitals to homes. Her own daughter needed home-care nursing, so she feels it keenly when patients can’t get the coverage they need. “Disappointing families is enough to keep me up at night.”
Many had pinned their hopes on the Biden administration’s infrastructure plan, which would provide $400 billion to improve home and community-based care. But as the president and Republicans vie over the proposal’s size and scope, it’s unclear whether that part will survive.
Parents, meanwhile, continue to shoulder an unrelenting burden, increasingly alone.

The Pandemic Deepens a Pay Gap

A nurse caring for a medically fragile child at home has the same responsibilities he or she would in a hospital but no medical backup in case of emergency. It’s a high-wire act, and experts say that prevailing wages don’t reflect its difficulty.

Federal guidelines permit state Medicaid programs to cover in-home care for eligible children regardless of their families’ income, since the price of round-the-clock nursing would bankrupt almost anyone. But states generally pay home care nurses at much lower rates than they would for equivalent care in a hospital or other medical center.

“They effectively establish a benchmark of workers’ compensation that competitively disadvantages this field,” said Roger Noyes, a spokesman for the Home Care Association of New York State. In turn, state-certified home health agencies that provide families with nurses pay meager salaries and seldom offer health insurance or other benefits to the nurses they employ.
So, although home care is more appropriate for medically fragile children, hospitals receive about half of Medicaid spending on these cases compared with 2 percent for home care, studies show.
And Covid-19 generated competing demands for nursing that further diminished the home care work force. Surging with the pandemic, the state’s largest health care provider, Northwell Health, hired 40 percent more nurses in 2020 than the year prior and contracted with 1,000 additional temporary nurses once the local hiring pool was exhausted.
Robert Pacella, the chief executive of Caring Hands Home Care, the agency that staffs Henry’s case, noticed the change in January as nurses began declining opportunities to pick up shifts and new applicants dwindled.

“As recently as two years ago, we could easily interview 20 people a week who were qualified — now we’re lucky to get two to four,” he said. For the first time in his career, Mr. Pacella said, he had to turn new patients away.

People with IDD at Risk of Harm from Untrained Clinicians
PR Web, Times-Union, June 8, 2021
Note: While the following is a public relations promotional campaign for IntellectAbility, many of our readers would find the content and perspective of this piece to be of interest.

It’s no secret that the road to earning the title of “medical doctor” is an arduous one—on average, prospective doctors must complete a four-year undergraduate degree, followed by four years in medical school and three to seven years of residency training. It’s true that all physicians study the human body, but, for most, an essential part of medical training is all but ignored. Most doctors have little to no experience working with and caring for people with intellectual or developmental disabilities (IDD). And it’s this lack of experience that may result in harm, however unintentional, to people with IDD.

People with IDD have complex medical needs just like other patients do. Unfortunately, receiving appropriate care from clinicians who are familiar with the unique needs of those with IDD can be extraordinarily difficult. But many doctors still oversee and provide care to people with IDD, regardless of their lack of experience. Dr. Craig Escudé, president of IntellectAbility, says, “In medical school, even though I studied the heart, cardiac surgery isn’t my field. If I attempted to perform open-heart surgery, I would most likely fail as I don’t have the necessary preparation in that area. The same goes for people with IDD. Most doctors lack the expertise necessary to effectively treat this population and would treat the overlying condition rather than seeking out the underlying cause.”
Because many physicians lack appropriate training in the care of this particular patient population, it’s less common for them to work as diligently to help people with IDD. Many clinicians don’t recognize the behaviors people with IDD may display—especially with individuals who do not communicate using words—and this can lead to misdiagnosis, undertreatment, and inappropriate medical care. Some clinicians treat the behavior instead of taking the time to explore potential underlying causes. In worst case scenarios, doctors may believe that people with IDD have no quality of life and aren’t meant to live that long, recommending hospice instead of treatment due to the person’s “poor quality of life”.

A recent survey found that only 40% of doctors were very confident in their abilities to provide high quality medical care to people with IDD. A full 82% of physicians thought people with significant IDD have a worse quality of life compared to people without IDD, and only 56% of those surveyed said that they welcomed people with IDD into their practice(2). These factors point to increased risk of harm to people with IDD, even if doctors believe they’re treating this patient population to the best of their ability.

State News:
Pennsylvania - Father Leads Efforts to Keep White Haven Center Open
By Andy Mehalschick, PA Homepage, June 8, 2021
Families of residents of a state run facility targeted for closure say they are not giving up their fight to keep the doors open. The White Haven Center in Luzerne County is home to about 90 residents with intellectual and physical challenges.

The state announced closure plans in 2019. Families of residents have been fighting ever since to stop the closure. Eyewitness News spoke with a man who’s daughter was a resident here for 40 years. She recently passed away.

“Maria, being at the White Haven Center, really gave her a quality of life that I don’t see how we could have done that at all,” said Thomas Kashatus, the president of White Haven Center Relatives and Friends.

Kashatus’ 52-year-old daughter Maria lived at the White Haven Center since she was 12. She passed away several weeks ago. Kashatus has been one of the leaders in the fight to keep the White Haven Center open.

The state has been gradually phasing out facilities like White Haven, citing better service as well as cost savings to the commonwealth.

State officials argue that residents will be better served in a community setting. 400 employees also will be out of work. The closure announcement sparked protests from family and friends as well as community leaders.
State lawmakers from our region say they are trying to convince state officials to keep White Haven Center open.

“This is purely an administrative decision from the Department of Human Services. So we have asked them to maintain these facilities and allow families to have choice. So this is about choice and type of care for your intellectually disabled family member,” said Rep. Tarah Toohil (R) 116th District.

“The disruption to these beautiful people that they have chosen the White Haven Center their home they believe that this is the best quality of care for them, that’s what their loved ones feel,” Sen. John Yudichak (I) 14th District said.

For Kashatus, his passion for this fight has intensified.

Mehalshick: “Has her passing motivated you to fight even harder?”

Kashatus: “Absolutely there’s no doubt about it. I’m having a hard time getting over her passing. I keep thinking about the people that are there. The quality of life they have up there. I just think it’s wrong for the State to close it.”

Missouri Fails to Adequately Protect those with Developmental Disabilities from Abuse, Neglect
By William Skipworth, Missourian, June 9, 2021
Carl DeBrodie's family hadn’t seen him for months when his remains were found encased in concrete in a Fulton storage unit in April 2017. What they discovered in the weeks following was even more horrifying.
DeBrodie, 31, was a developmentally disabled man living at Second Chance Homes, a care facility in Fulton that had a contract with the state.

In the wake of DeBrodie's highly publicized death, the Missouri Developmental Disabilities Council, a federally funded council appointed by the governor to advocate for the developmentally disabled and advise on policy, released a statement.

"The Council has been following Carl DeBrodie's story and has high expectations that once all investigations are completed that there will be justice for Carl and that there will be necessary systemic changes implemented so that others may avoid such a gruesome death and lived experience," the 2018 statement read.

Years after DeBrodie's death, a close examination of division policy and interviews with officials and front-line staff suggest little has changed in
Missouri's developmental disability system to detect or prevent abuse and neglect. Families with developmentally disabled loved ones in state care and employees working in the field describe a system that is still deeply flawed.

State records back this up. From Jan. 1, 2019, to April 22, 2021, 24 developmentally disabled people died in accidents in Missouri-operated or -contracted facilities, according to data obtained through a Sunshine Law request. The data also showed 701 reports of verbal, sexual or physical abuse and neglect in that time period.

"Nothing’s changed," said Dina Lester, a registered nurse from Kansas City who worked with the division for almost 10 years and remembers DeBrodie's death.

Massachusetts -
Colleen Lutkevich Retires after 35 Years with COFAR
By Dave Kassel, COFAR Blog, June 7, 2021
Colleen M. Lutkevich, who advocated for 35 years on behalf of COFAR and served as its unpaid executive director for more than two decades, officially retired this month from the organization.
When she was 25 years old and pregnant with her first child in 1985, she first went to work part-time as a secretary for COFAR, which had only been established a couple of years earlier.

“People organized COFAR for the sad reason of having a loved one with an intellectual disability,” Colleen said in a farewell message to the Board this past week. “But they channeled their sadness into advocacy and made a real difference in people’s lives, and in the DDS system.

“I feel good about this decision (to retire) and I know that no one is irreplaceable!” Colleen’s message continued. “I remain willing to offer help and advice as needed and I wish all of you the very best in continuing your work with COFAR.” She is continuing to serve as president of the Wrentham Family Association, an affiliated organization to COFAR.
Colleen Lutkevich (2nd from right) with members of her family at a Wrentham Developmental Center holiday party in 2012. With her are (from left) her father, John Sullivan; mother, Gladys Sullivan; and sisters, Laura Bradley, Jean Sullivan, and Joyce Wise.

Colleen followed in the footsteps of her father, John Sullivan, and her mother, Gladys, in advocating for better care for her sister, Jean, who has an intellectual disability. Jean has lived at the Wrentham Developmental Center for more than 60 years.

John Sullivan, who was one of the founders of COFAR, was among the plaintiffs in Ricci v. Okin, the landmark federal lawsuit in the 1970s that led to major upgrades in care in the state facilities. John died in 2017 and Gladys died in 2016.

North Carolina - Bills to Raise Pay for Nursing Home Staff, Home Health Aides Advance in House
By Laura Leslie, WRAL News, June 8, 2021
Direct care workers for the elderly and disabled could soon make more money in North Carolina.The House Health committee passed two bills unanimously Tuesday to add more money to Medicaid to increase the pay for staff at group homes and nursing homes, as well as home health aides.

The workers, who feed, bathe, toilet and give medication to disabled and elderly people in care facilities and home settings make an average of only $10.50 an hour, and the coronavirus pandemic only exacerbated shortages of certified nurse aides and home health aides.

Rising wages in other job sectors, such as retail and fast food, are making it even harder for care facilities to compete for workers.

Rep Donna White, R-Johnston, said turnover rates for care workers are at a record 56 percent, and as many as one-third of jobs needed for adequate staffing are vacant.
"Many of our health care companies who depend on Medicaid as their sole source of revenue do not have that financial flexibility to increase their wages and wages there were not able to keep up," White told fellow lawmakers.

Sandra Brown says the low pay and unfilled positions are endangering patient welfare. She's been working in the industry for 28 years and still earns just $10 an hour with no health insurance.

"I’ve held their hand [and] wiped their tears. I’ve given them their final baths so that they never were – nor did they ever feel – alone," Brown said. "I’m very proud of the care I give my patients."

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.


There are currently no bills in Congress that protect Choice and support a full range of residential and employment options for all people with intellectual and developmental disabilities.
Direct Support Professionals:

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