February 17, 2023

VOR's 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.

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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

State News:

Pennsylvania - White Haven Center Set to Close This Month

By Chelsea Strub, WNEP-16 News, February 14, 2023

For nearly four years, Tom Kashatus of Glen Lyon has been fighting to keep the White Haven Center in Luzerne County open.

With its closure now just days away, he feels "confused, despondent, unsatisfied."

"There's a lot of sadness, and right now, I really don't know how to put it towards and inform the people that things don't look too good," Kashatus said.

Kashatus's late daughter Maria was a long-term resident of the facility for adults with intellectual and developmental disabilities.

"Maria was there about 40 years," explained Kashatus.

Kashatus is still the legal guardian of a few residents needing state care.

In 2019, The Pennsylvania Department of Human Services announced its plan to close the White Haven Center in Luzerne County and the Polk Center, a similar facility near Erie.

In its announcement, the DHS called the closure part of an effort to move Pennsylvanians away from institutionalized care. 

Kashatus and others with connections to the state facilities protested the closure.

"I feel it's important because you never know when it's going to happen to you, or you're going to have a loved one that you're not going to be able to take care of. Where are they going to go," added Kashatus.

They filed a federal class action lawsuit to keep the facilities open for their loved ones.

"Once we had gotten an attorney to help fight the case and start looking for a trial and all, I feel positive all the way up until maybe about two or three weeks ago," said Kashatus.

Despite the lawsuit, DHS is moving forward with the closure, telling Newswatch 16 expects it to happen by February 24.

In 2019, The White Haven Center in Foster Township was home to about 100 residents. More than 400 people worked there.

As of last week, DHS says only eight residents and fewer than 200 employees remain.

Since 2019, DHS has been transitioning both residents and employees to community-based placements, private intermediate-care facilities, or placement at state centers in Selinsgrove and Ebensburg.

"I just hope that they get the care that they deserve. I think Selinsgrove will try their best," said Kashatus.

Kashatus says he will continue to fight to reopen the White Haven Center or another facility like it.


North Carolina - Low Pay, No Space for Advancement: Why the Workers Who Support People with Disabilities are Leaving  

By Clarissa Donnelly-DeRoven, NC Health News, February 13, 2023

Advocates have long predicted that these labor conditions would one day lead to a workforce crisis. That day, they say, is now here. 


Matt Potter is 36 years old and a disability rights activist. He has cerebral palsy and uses an electric wheelchair. Right now, his parents are his primary caretakers. They help him get to and from the bathroom, move in and out of bed, change his clothes and so on — things he describes as “intense, but rather simple personal care needs.”

But they’re getting older.

“None of them have any world-shattering health issues right now,” Potter said. “There’s no terminal cancer or anything like that. But, you know, Father Time is undefeated.”

There are thousands of others like Potter in North Carolina: people who have disabilities and want to live at home but require assistance with their day to day tasks to make that possible. Rather than relying on family members for all their care, they’re supposed to have access to an alternative: a direct support provider. 

But there’s a huge shortage of these workers. It’s a systemic issue fueled by low pay, few opportunities for career advancement and poor working conditions. 

It’s also an issue with huge implications for people with disabilities, especially someone like Potter who has a bachelor’s degree and has served on multiple boards and committees to support people with disabilities.

If Potter’s parents suddenly fell ill and couldn’t meet his needs, and there weren’t support workers available to help him with his daily living tasks, he would likely end up in an institution, which he said, “is about the least appropriate place possible for me.” 

One in five assigned hours goes unused

It’s hard to quantify the shortage of these workers because of poor data collection at the federal and state level. 

One way to get a scope of the issue locally is to compare the hours of service people have been approved to receive through North Carolina’s Medicaid Innovations Waiver — for people who have disabilities that require a significant level of care — to the number of hours the state actually pays for. 

Of all the services authorized between 2019 and 2021, just about 79 percent of the available dollars were paid out, according to data that was obtained by North Carolina Health News through a public records request.

That doesn’t mean 79 percent of people got services, or that everyone got 79 percent of the services they needed. Some people likely received all of their hours while others got nothing, but the data lacks these details.

What is certain is that the services the state never paid for equates to thousands, maybe millions, of hours of care. Over that two year period, a total 39,478,612 “units” of service that the state authorized went unused, in a mix of 15-minute increments, hours and full days.

Those in the field say a major reason for the disparity between hours allotted and hours used is that there are not enough workers to deliver that care, something experts have been flagging for at least 20 years. 

But even that’s an undercount

While the numbers point to the shortage, it doesn’t get close to the real level of care that people with disabilities in the state are missing out on. 

In North Carolina, there are 16,439 people on the “Registry of Unmet Needs,” the waiting list for a spot on the Innovations Waiver. There are currently 14,138 slots on the waiver — all filled — and an average wait of between five and 10 years. However, spots open up county by county, and some counties have projected wait times of more than a decade. 

For someone with a disability that requires a significant level of care, getting on the waiver is crucial, since private insurance and regular Medicaid generally don’t cover all the needed services. People on the waitlist can get some services, but generally not as many. Also, the state reimburses that care at lower rates than waiver services, making it unattractive for providers.

All this translates into one reality: There are not enough workers available to provide services to those who need them. 

“But I would caution against treating it as some sort of natural phenomenon,” said Corye Dunn, the policy director at Disability Rights North Carolina. “The imbalance is created by a growing population and an artificially depressed rate/wage.”

Stagnant pay, little room for growth

For all this, direct service providers get paid about $11.50 an hour on average, according to a pay study conducted by policy workers and advocates in the state. The wage has only risen about two dollars since 1998, when a study by researchers at UNC Charlotte found the average pay to be about $9.13 an hour.

“That is abysmal,” said Pat Porter, who is currently working on the pay study and serves as a policy adviser for the state legislature. She also headed up the developmental disabilities division within the state’s health department for nearly 15 years. “It is certainly not a living wage.”

Surveys of the service provider workforce have found that the job is primarily done by young women of color, especially immigrants, without college degrees. Advocates argue that’s a reason wages have remained so low for so long. 

“I mean you look at other occupations that are dominated by women and minorities, and they’re all low-wage jobs, right?” said Joe Macbeth, the CEO and president of the National Alliance for Direct Support Professionals. “Nurses of 100 years ago were in the exact same position that we find ourselves in today. Nurses were not seen as professionals 100 years ago. They were bedside caregivers. They were handmaidens to physicians.”

Macbeth and others have long advocated for a more standardized credentialing system for direct service providers, alongside pay raises. Much of the training the providers now receive happens at the agency where they work, and if they go to a different agency — regardless of their years of experience — they often have to go through the same training program again, and start at the same low wage.

A million entities to blame

There are about half a dozen agencies — federal on down to local — involved in determining how much money trickles into the workers’ wallets.

“When states determine their budgets, they have to rely on an Occupational Classification that’s recognized by the [federal] Bureau of Labor Statistics,” Macbeth said. To determine what they should pay the workers, “they use a percentage of a home health aide, a percentage of care attendant, a percentage of the Certified Nursing aide, and they say, ‘Based on these occupations and these median salary ranges, this is what a [direct service provider] should earn.’ Well, it’s apples and oranges.”

The N.C. General Assembly allocates money for the state’s Medicaid Innovations Waiver. The state Department of Health and Human Services manages that waiver program, deciding what services to cover, who can provide each service and how much to reimburse for each. Local mental health management agencies develop their own networks and contract with local private agencies to hire the workers. Those management organizations can adjust the rates paid to each agency, so long as they don’t fall below a certain threshold set by the state. 

The private agencies ultimately make decisions about how much of that rate gets spent on their own administrative and overhead costs, and how much goes to wages (and maybe benefits) for the workers themselves. 

Read the full article here

Georgia - Workers who Care for Disabled People are in line for a Pay Hike. But Allies Say More is Needed

By Jill Nolin, Georgia Public Broadcasting, February 10, 2023

Workers who assist people with disabilities would receive about a $5-per-hour salary increase if decision-makers heed the recommendations packed into an ongoing wage review.

The increase would cost the state about $91 million and lift the hourly wage of caregivers to $15.18, up from $10.63, according to cost estimates released Thursday by the state Department of Behavioral Health and Developmental Disabilities.

Commissioner Kevin Tanner argues that implementing the rate study is essential to shoring up the safety net in Georgia and providing services to more people with disabilities. He told reporters this week that he sees it as “the first step in several to correct the workforce issue.” 

His staff outlined the study’s recommendations for the agency’s advisory board Thursday. 

“I will tell you that if we don’t implement the rate increases, we’re not going to have providers to provide the services,” Tanner told the board.

But service providers, who have wrestled with staffing shortages that predate the pandemic, say such an increase – while appreciated – would fall short of what is needed to address the crisis at a time of rising costs.

“We can’t hire anyone at $15. There’s no one in the state that can hire someone at $15 an hour. Our concern is that if we don’t get that right now, we could potentially live with that $15.18 for another decade or more,” said Diane Wilush, president and CEO of United Cerebral Palsy of Georgia.

“We can all talk about how important our (workers) are and how valued they are and how everybody appreciates them, but none of that pays for their groceries,” she said. 


Virginia Senators Agonize over what's a Fair Wage for People with Disabilities

by Dave Ress, Richmond Times-Dispatch, February 14, 2023

Back home, state Sen. Steve Newman, R-Lynchburg, knows a young man with disabilities, and he couldn't stop thinking about him when a bill about paying people less than the minimum wage came up.

"I'm his god-parent and I love him. He is very talented and he loves his job. ... he loves telling you, he's working," Newman told fellow members of the Senate Commerce and Labor Committee, his voice cracking a bit.

"I have great fear if we go in and place these limits as opposed to the current requirements, he is not going to have that job," he said.

Newman's god-child isn't working in the kind of sheltered workshop that is allowed to pay employees less than the minimum wage, under a law dating back to the 1930s and that Del. Patrick Hope, D-Arlington, is proposing to eliminate in Virginia.

Hope's bill would gradually raise wages for people now paid subminimum wages, to $9.50 an hour as of July 1; $10.50 an hour as of July 1 2024; $11.50 an hour as of July 1 2025, and at the state minimum wage as of July 1 2026.

Virginia's minimum wage now stands at $12 an hour. It is set to rise to $13.50 in 2025 and $15 in 2026.

"I know we all, on both sides, love these people; the patron I know you do too and you want them to be paid more," Newman said.

"My fear is that he's simply not going to have a job, we're not going to force those employers to hire him, they're not going to have the incentive to hire him, and he's not going to make it," he said. "I appreciate what you are trying to do but to me it just hurts too much."



Planned Giving

As we approach the mid-April tax season, we ask that our members consider making a donation to VOR as a way to ease your tax burden while supporting our mission to advocate for individuals with I/DD and autism.

As always, we suggest you consult with your policy administrators and tax professionals to determine how best to contribute.

National News:

Kidney Transplant Less Likely in Adults With Developmental Disabilities

By Sophie Putka, MedPage Today, February 15, 2023

Despite similar kidney transplant outcomes, adults with intellectual and developmental disabilities (IDD) were less likely than the general population to be evaluated for transplant and less likely to receive one, a propensity-score matched analysis found.

In the cohort of more than 21,000 end-stage kidney disease (ESKD) patients on Medicare, multivariable analysis showed that patients with IDD were 54% less likely than those without IDD to be evaluated by a transplant surgeon (OR 0.46, 95% CI 0.43-0.50) and 62% less likely to receive a transplant (OR 0.38, 95% CI 0.34-0.42), according to researchers led by Brittany Hand, PhD, of The Ohio State University School of Health and Rehabilitation Sciences in Columbus.

Among the subset evaluated by a transplant surgeon, about a fourth of the patients included overall, those with IDD had 51% lower odds of receiving a transplant (OR 0.49, 95% CI 0.43-0.55), the group reported in JAMA Surgery.

"There's a breakdown in that process before they're getting in front of a transplant surgeon to be evaluated, and then subsequently, continuing barriers that are being faced in the pipeline to getting a transplant," Hand told MedPage Today.

In the study, there were no differences in terms of transplant outcomes for IDD patients compared with the general population.

"There's not any reason that primary care providers and transplant centers should not be fully considering these patients for these life-saving medical procedures," said Hand.


Clinicians Get Guidance On Treating Severe Autism Behaviors

By Michelle Diament, Disability Scoop, February 13, 2023

Individuals with autism and other developmental disabilities are at higher risk of self-injury, aggression and other severe behaviors, but families are often unable to access effective treatments. A new guide for clinicians is designed to change that.

The five-part document from Autism Speaks offers pediatricians and other clinicians background information on challenging behaviors and details how to screen for and assess these issues as well as guidance on evidence-based treatments. It also includes a toolkit for centers looking to create a successful program to treat severe behaviors.

“Despite the prevalence of these behaviors, the majority of families lack access to appropriate and effective treatments,” said Jacqueline Perlmeter, program manager of clinical programs at Autism Speaks. “This lack of access to quality care can lead to poor treatment outcomes, limitations on skill development, poorer quality of life and inability to participate in the community that they live in. In addition, these behaviors can lead to substantial physical and emotional harm to themselves and others.”

In light of that, Autism Speaks brought together leaders in autism care and research as well as individuals with autism and family members in 2020 for its Thought Leadership Summit on Challenging Behaviors. Work groups formed after the summit established several recommendations and priorities that served as the basis for the guide for clinicians.

“This is a highly underserved segment of our community who often cannot access the behavioral and mental health services they need, leading to worse outcomes and a higher likelihood of crisis situations,” Perlmeter said. “By publishing this guide, we are working to ensure that local providers — not just autism specialists — have the knowledge and skills they need to effectively serve this population.”


Autism Rates Increase, Still Great Disparities in Race and Gender

By Rachael Zimlich, RN, BSN, Contemporary Pediatrics, February 16, 2023

Both the CDC and the AAP stress the need to look at how resources are allocated for autism spectrum disorder.

The number of children diagnosed with some degree of autism spectrum disorder (ASD) continues to increase, according to new estimates from the (CDC), but the number of children with ASD and intellectual disabilities remains in the minority.

About 1 out of every 150 children was diagnosed with autism spectrum disorder between 2000 and 2002, but that number increased to 1 in 54 by 2016, and again to 1 in 44 by 2018. Diagnoses varied by geographical location, gender, race, and socioeconomic status in the past, but newer research suggests that at least racial and ethnic disparities are decreasing. While little variation now remains between white, nonHispanic white, and Black children in terms of overall autism diagnoses, the CDC notes that Black children diagnosed with ASD have higher rates of intellectual disabilities than white children, and their diagnosis is typically made at a more advanced age.

The American Academy of Pediatrics (AAP) has also released data on autism trends, noting that overall, children with ASD who experience intellectual disabilities are in the minority. About one third of children with ASD have intellectual disabilities, but that proportion is higher among Black and Hispanic children, as well as among children from underserved communities, according to the report.

The AAP report dove even further into these racial and economically driven disparities at the disability level, highlighting a two-fold increase in children with ASD and intellectual disabilities compared to a five-fold increase in ASD diagnoses without intellectual disabilities. Black children were 30% less likely than white children to be free from intellectual disabilities, the report notes, just as children in more affluent communities were 80% more likely to be diagnosed with ASD but remain free of intellectual disabilities.


Another Way to Say Thank You

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May we suggest $19 per month?

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VOR Bill Watch:

[Please click on blue link to view information about the bill]


H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) To amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.


S.100 - Better Care Better Jobs Act

Sen. Bob Casey (D-PA) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

VOR supports increasing funding for people with I/DD, but we have concerns that this bill, in its current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.


At this time, there are no bills which we outrightly oppose. Stay tuned.

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