June 7, 2024

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

Please submit your state reports for

VOR's 2024 Annual Meeting

June 23, 2024

3 pm - 6 pm ET / 2 pm - 5 pm CT / 1 pm - 4 pm MT / Noon - 3 pm PT

3 pm - VOR's Annual Members Meeting

An open meeting of the VOR Board of Directors,

discussing the state of our organization and the direction of our advocacy work.

We will announce the outcome of the voting for directors,

present the 2024 VOICE Award,

and introduce

URSULA

The 2024 VOR Teddy Bear

4 pm - Guest Speakers

Joe Macbeth - President, National Association of Direct Support Professionals will share his insights on the workforce and their perspectives on caregiving, the need for safety, security, better training, and a career path,

and how VOR members can advocate to rebuild the DSP workforce.

Jackie Kancir - National Policy Director of the National Council on Severe Autism, Jackie is the mother of a young woman diagnosed with SYNGAP1, an outspoken advocate for severe autism, a frequent blogger at "What We Need Yesterday",

and the co-proprietor (with her daughter Jadyne) of Bunny Egg Acres.

5 pm - Reports from the States

VOR members will update one another on the state of I/DD and autism services in their states. Please join us for this yearly event.

We encourage members to submit their state reports to us at info@vor.net

Registration is requested, but not required.

To register, please click here

Meet Ursula

Ursula is VOR's 2024 Teddy Bear, crafted by our very own Mary Reese.

And Ursula needs a new home...

Any person who makes a donation to VOR from May 30 to June 30, 2024

will be eligible

to "adopt" Ursula.

Ursula's new family will be announced in July.

If you would like to adopt Ursula,

please click here

Massachusetts - Family Says MA Red Tape Keeping Their Sister From Getting Care She Needs

By Kerry Kavanaugh, Boston 25 News, June 2, 2024

A Walpole family says they’re caught up in bureaucratic red tape as they fight for care for their sister with multiple disabilities.

The Massachusetts Department of Developmental Services [DDS] says the law requires the person to be in the least restrictive setting that can their needs.

But the family turned to 25 Investigates saying the places suggested for their sister’s care just won’t cut it and that some wouldn’t accept her because they could not provide the level of she needed.

“Our sister deserves more than what she’s getting. Sitting in a hospital with sores on her arms from sitting in her wheelchair all day,” said Kim Meehan of Walpole.

She’s talking about her sister, Kristen Robinson, 50, who she says has been all but stranded at Faulkner Hospital in Jamaica Plain for the last 10 weeks.

“She’s been medically cleared to leave. And they have facilities she can go to right now,” said Karen Brady, Kristen’s other sister.

Meehan and Brady say their little sister contracted meningitis as an infant in the 1970s. It left her with multiple disabilities. She has cerebral palsy. She’s legally blind, a quadriplegic, and suffers from dysphagia, which limits a person’s ability to swallow. A choking incident landed Kristen in the hospital on April 8th. And it’s unclear where she’ll go next.

Their mom, Kristen’s lifelong caretaker, died in December after a brief battle with cancer.

“Our mom did such an amazing job. I mean, but she sacrificed her entire life,” said Meehan. “We’re thinking, ‘Oh, help is going to come. We’re going to get some help.’ But it never came.”

Meehan says in the final months of their mom’s life, they began exploring residential options for Kristen’s care long-term, a residential setting. They say Kristen requires around-the-clock medical care. Before she was hospitalized, the sisters and their husbands were on rotating shifts at their late mother’s home.

“This agency that is supposed to be helping our sister and our family during the worst time of our life, is nowhere to be found,” said Meehan.

Meehan and Brady say DDS never sent extra nursing staff to the family’s home. And now they say they’re fighting with DDS for an appropriate residential placement. As the weeks go by, Kristen sits in the hospital for no medical reason, according to the sisters.

“No stimulation,” says Brady. “She hasn’t been with her day program, hasn’t seen her friends.”

In a statement to 25 Investigates, DDS wouldn’t comment on any specific case.

A spokesperson wrote, “In each case, the Department of Developmental Services (DDS) works hard to connect people with appropriate care as efficiently as possible.”

The sisters say DDS has recommended group homes and nursing homes. But, because of Kirsten’s significant medical needs, they say she’s been rejected from some of the facilities.

“We were told that Kristen could not be accepted here,” said Brady.” “Kristen was declined,” said Meehan.

Instead, the family is pushing for Kristen to live at the Wrentham Developmental Center. That’s a state-run intermediate care facility or ICF.

“She would be safe because there it’s a facility geared to taking care of the developmentally disabled, period. Like that’s what their job is,” said Brady.

They say that the state has declined that request, but the family says they don’t understand why.

DDS told 25 Investigates they are not mandated to honor location requests.

“When DDS is requested to place an eligible individual in a residential program, placement options are determined based on individual circumstances, needs, and other factors. Both agency staff and an individual’s guardian engage with each other to move forward to determine the most appropriate care. DDS placements are guided by state and Federal laws and regulations, as well as established case law, to provide least restrictive and integrated community placements. As such, community settings have been built up over the years to provide a wide array of services. This includes behavioral and medical model homes with 24/7 nursing and can address clinical needs to achieve community integration and move away from the institutionalization of individuals requiring comprehensive care.”

The sisters say they want a place where they believe Kristen will be safest and happiest. “She deserves to have a life, and she deserves to have everything that she is entitled to and she’s suffering,” said Meehan.

Read the full article here

Scientists Spot Gene Behind Form of Intellectual Disability Affecting Thousands Worldwide

By Dennis Thompson, HealthDay, June 3, 2024

Mutations in a single newly identified gene are responsible for developmental disorders affecting tens of thousands of people worldwide, a new study claims.

The gene – RNU4-2 – can cause a collection of developmental symptoms that had not previously been tied to a distinct genetic disorder, researchers report.

The discovery is significant because it represents one of the most common single-gene genetic causes of such disorders, ranking second only to a movement disorder called Rett syndrome, researchers said.

“Nowadays, finding a single gene that harbors genetic variants responsible for tens of thousands of patients with a rare disease is exceptionally unusual,” said lead researcher Daniel Greene, an assistant professor of genetics and genomics sciences at the Icahn School of Medicine at Mount Sinai in New York City. “Our discovery eluded researchers for years due to various sequencing and analytical challenges.”

More than 99% of genes known to harbor mutations that cause developmental disorders produce proteins through a process called encoding.

These disorders cause developmental delays that affect a person’s social, academic or occupational function, researchers said. They also cause intellectual delays that limit a person’s learning, reasoning and problem-solving skills.

Researchers figured that they might be overlooking some genetic causes of developmental disorder because non-coding genes that don’t produce proteins were being overlooked.

RNU4-2 is a non-coding gene, and researchers discovered it after using a U.K. genetics library to analyze over 41,000 non-coding genes in more than 5,500 people with intellectual disability and about 46,400 healthy people.

The new study appears in the journal Nature Medicine.

Continued

Read a different take on the same story, from NBC News here

Autism Severity Linked to Fetal Brain Growth Patterns

Neuroscience News, June 5, 2024 - Based on a study from University of California, San Diego

Summary: Brain overgrowth in utero may explain the varying severity of autism in children. Researchers used brain organoids from toddlers to show that larger brain growth correlated with more severe autism symptoms. The findings could lead to prenatal identification and potential therapies for autism.

Key Facts:

1. Brain organoids from autistic toddlers were 40% larger than those from neurotypical children.
2. Larger brain growth in utero was linked to more severe social and language deficits.
3. All children with autism showed faster brain organoid growth than neurotypical peers.

Some children with autism experience profound, lifelong difficulties like developmental delay, social struggles and even the inability to speak. Others experience more mild symptoms that improve with time.

The disparity in outcomes has been a mystery to scientists, until now. A new study, published in Molecular Autism by researchers at University of California San Diego, is the first to shed light on the matter.

Among its findings: The biological basis for these two subtypes of autism develops in utero.

Researchers used blood-based stem cells from 10 toddlers, ages 1 through 4, with idiopathic autism (in which no single-gene cause was identified) to create brain cortical organoids (BCOs), or models of the fetal cortex. They also created BCOs from six neurotypical toddlers.

Often referred to as gray matter, the cortex lines the outside of the brain. It holds tens of billions of nerve cells and is responsible for essential functions like consciousness, thinking, reasoning, learning, memory, emotions and sensory functions.

Among their findings: The BCOs of toddlers with autism were significantly larger — roughly 40 percent — than those of neurotypical controls, according to two rounds of study performed in different years (2021 and 2022). Each round involved the creation of hundreds of organoids from each patient.

The researchers also found that abnormal BCO growth in toddlers with autism correlated with their disease presentation. The larger a toddler’s BCO size, the more severe their social and language symptoms were later in life, and the larger their brain structure on MRI.

Toddlers with excessively enlarged BCOs showed greater-than-typical volume in social, language and sensory brain areas when compared to neurotypical peers.

“The bigger the brain, the better isn’t necessarily true,” said Alysson Muotri, Ph.D., director of the Sanford Stem Cell Institute (SSCI) Integrated Space Stem Cell Orbital Research Center at the university.

Conclusions:

By embryogenesis, the biological bases of two subtypes of ASD social and brain development—profound autism and mild autism—are already present and measurable and involve dysregulated cell proliferation and accelerated neurogenesis and growth.

The larger the embryonic BCO size in ASD, the more severe the toddler’s social symptoms and the more reduced the social attention, language ability, and IQ, and the more atypical the growth of social and language brain regions.

Read the full article here

Further explanation here

Read the abstract here

State Waivers Hit Snag At CMS

By Chelsea Cirruzzo and BenLeonard, Politico, courtesy of the American Health Care Association,

June 7, 2024

The Biden administration is struggling to keep up with an influx of requests from states wanting to implement innovative Medicaid expansions, POLITICO’s Kelly Hooper reports.

The process of reviewing requests for the Social Security Act’s Section 1115 waivers — which allow states to roll out experimental projects to better serve Medicaid enrollees — used to average 71 days.

Partly because of staffing challenges at CMS, Medicaid programs wait more than 450 days on average for their applications to be approved, according to the National Association of Medicaid Directors.

The backlog delays care for vulnerable people, state Medicaid directors say. Some of them fear the upcoming presidential election and a potential transition of power in November could further delay or even tank their proposals.

What CMS says: The agency told POLITICO that the problems stem from a lack of funding from Congress, which has resulted in a hiring freeze that disrupts “the core work of the agency.” CMS also said that states are amending waivers to add more complicated expansions, such as for people who are incarcerated, which makes the review process more time-consuming.

Why it matters: The delays — affecting blue and red states alike — according to Medicaid officials, deprive people of potentially lifesaving care and stifle lower costs, a key priority for the Biden administration.

Kentucky, Utah and West Virginia have been waiting two years for permission to use Medicaid to pay for addiction treatment. In 2023, California asked to use Medicaid to connect behavioral health patients with housing and employment. Nevada applied for approval in 2022 to have Medicaid cover dental care for adults with diabetes.

“We very much appreciate that CMS has opened the door for state innovation, but unfortunately, I don’t think anyone expected the significant backlog and staffing challenges that would come along with that,” said Stacie Weeks, administrator of Nevada’s Medicaid program.

Some Medicaid directors also worry that certain waiver proposals, like ones providing housing services to some enrollees, might not be approved under a new administration. The backlog can also stifle Medicaid directors’ drive to innovate.

Continued

ID/DD Providers Facing Lack of Rate Increases, Workforce Shortage     

By Deborah Stadtler, Provider Magazine, June 6, 2024

While long term caregivers and providers all share a passion, dedication, and connection to their residents, there are different regulations and challenges depending on the types of care needed. The intellectual and developmental disability (ID/DD) services provider community that attended AHCA’s recent ID/DD Hill Fly-In event to advocate on critical issues included providers that serve residents in immediate care facilities for individuals with intellectual disabilities (ICFs/IID) and group homes.

Across the long term care sector, the workforce shortage can be severe and is exacerbated by recent staffing mandates and other regulations. For ID/DD providers, being able to raise pay rates, compete for workers, and increase occupancy is tied very closely to rate increases and Medicaid funding. ID/DD providers rely heavily on Medicaid for funding, leading to facility closure if Medicaid funding is reduced or rate increases simply don’t keep up.

Medicaid Funding Is Critical

Long term services and supports (LTSS) help people with disabilities accomplish basic daily activities like bathing, getting dressed, fixing meals, and walking. Medicaid is the primary payer of LTSS with virtually all individuals with developmental disabilities and 60 percent of nursing center patients relying on Medicaid on any given day for their care.

Low Funding Leads to Closures

Medicaid already fails to fully cover the cost of care, and any proposal that makes further cuts to an already underfunded program will result in centers closing, negatively impacting individuals’ access to care. 

According to the Centers for Medicare & Medicaid Services (CMS) Quality, Certification, and Oversight Reports (QCOR), the number of active ICFs/IID has steadily declined over the past 14 years. In 2011, 6,567 ICFs/IID were active, compared to just 5,606 facilities in 2023. Furthermore, newer facilities are not being built and certified at nearly the same pace of closures. This is ultimately leading to fewer active ICF/IID facilities and patients seeking care elsewhere and further from home or nowhere.

The Pervasive Workforce Crisis

ICFs are facing a workforce crisis and have already had to take drastic actions such as not accepting new residents, closing homes, or only caring for those with low needs. Even though CMS’ minimum staffing rule ratios does not directly apply to ICFs, the new requirement on one sector of long term care will impact ICFs being able to find the staff they need. 

“The staffing rule impacts us because the effect trickles down,” said Craig Cloud, CEO of Friendship Community Care, Inc., in Arkansas. “We all need nurses. It’s not a sustainable path.”

New Mexico

New Mexico has 43 ICF/IID group homes and 271 licensed beds. These facilities are facing a staff vacancy rate of 22.6 percent, according to Mark Schinnerer, CEO of CARC, Inc., in Carlsbad, New Mexico. 

This is particularly difficult as New Mexico offers many jobs in the oil industry, which typically pay more. Even with a wage increase of 9 percent from last year, direct care pay cannot keep pace. Schinnerer has been recruiting in Puerto Rico to fill open positions in CARC facilities, but he still needs more direct care staff. 

Arkansas

According to Cloud, inflation is another factor challenging ICF/IID providers. Friendship Community Care is the largest, private, not-for-profit in Arkansas with 172 beds between ICF, group homes, and independent living.

Arkansas facilities have not seen a rate increase for ICFs since 2012, despite high inflation since the pandemic. In addition, Cloud notes that the recent regulations on overtime, noncompete agreements, and access have also impacted the sector.

Idaho

The most important issue in Idaho is protecting Medicaid funding related to individuals with intellectual disabilities, said Jamie Anthony, LSW, executive director of developmental options in Pocatello, Idaho. In Idaho, the reimbursement rate has not been sufficiently adjusted over the years to account for inflation and other workforce competition to allow this sector to remain competitive.

Staff shortages were an issue before 2020 but the pandemic amplified the issue. Not only is finding the quantity of staff a struggle, but finding quality staff is also a challenge. Anthony notes that supervisor's roles have shifted tremendously over the past five years, with more time allocated to training and retraining staff to keep the quality of services at a desired level. When facilities operate in crisis mode, trying to keep the doors open and keep the right number of staff on the schedule to keep everyone safe, it becomes challenging to focus on any other priorities. 

“As providers, we want to pay our direct care staff and leadership team a fair, livable wage,” said Anthony. “One that reflects the hard work put into this job each day.  

Read the full article here

Putting positive spin on the state's ongoing failure to care for the residents of the Glenwood Resource Center:

Iowa - DHHS Director Kelly Garcia: GRC on Track to Close at the End of June

By Ethan Hewett, KMA Land, June 4, 2024

State officials say they are still on track to close the Glenwood Resource Center at the end of this month as they work to relocate the remaining residents.

That's according to Iowa Department of Health and Human Services Director Kelly Garcia, who tells KMA News they are in the final weeks of the GRC, which has provided care and other services to Iowans with intellectual and developmental disabilities, as they work to relocate the roughly 20 remaining clients at the institution to other settings for continued care. Over the last two years, Garcia says state and local employees have been working to relocate the nearly 150 clients residing at the center at the time of the closure announcement in April 2022. While some individuals with more complex needs have been relocated to the Woodward Resource Center, a similar state-run institution in central Iowa, Garcia says most have transitioned into home or community-based services.

The GRC closure came amidst a troubling chapter for the state-run facility that has been the subject of several state citations and allegations regarding the treatment of its clients and facility conditions in recent years. The U.S. Department of Justice also launched an investigation in 2019 into allegations of poor care and unethical research on residents, which found that the state had violated the constitutional rights of GRC residents. The state and the DOJ later reached a settlement in 2022, which included federal officials continuing to monitor the GRC and the Woodward Resource Center. Garcia began her role just weeks before the DOJ had sent a letter to the state at the beginning of their investigation.

While commending the front-line direct care workers at the facility, Garcia says the closure also comes as the center struggled to find higher-level clinical care to adequately serve its residents.

"So, I came forward to the governor and we made that difficult decision to transition the facility--it was a hard decision, but it was the right one," she said. "We owe it to the guardians and of course every individual there and our own team members to operate that facility safely and with a long-term plan. In the absence of being able to do that with the right level of clinical support, this is the decision we find ourselves in."

The GRC has also been one of the largest employers for the community of Glenwood, with nearly 470 workers at the time of the announcement to close the facility. According to a notice on Iowa's Worker Adjustment and Retraining Notification, or WARN, website from late April, 235 staff members are still working at the facility and face being laid off at the end of the month. Garcia says that have been hosting job fairs on the campus for the past two years and working to relocate staff to other state facilities.

"Where we could, we hired individuals into other jobs, some of which were into our other facilities as we operate other facilities across the state so that was a natural transition point--not everybody's life allowed them to move across Iowa, but we certainly were happy when we saw those applications come through," Garcia explained. "We've also hired in other jobs in HHS, as we're the largest state agency and there were a number of other openings where individuals were able to transition into other lines of work."

Garcia says they are also collaborating with Iowa Workforce Development to assist the staff who are staying on until the facility closes to fund a new job. She also commended those direct care workers who have remained on staff even after the closure announcement.

"To do this work every day is a calling, but to do it in the face of a closure where your job is going to end is absolutely heroic," said Garcia. "So, we were honest with them from the very beginning, we ensured there were job fairs on campus, and we also made several financial investments, including retention bonuses to reflect that commitment to stay to the end."

Read the full article here

Illinois Could be 19th State to Phase Out Subminimum Wage for Disabled Workers

Bu Alex Abbeduto, Capitol News Illinois, via Southwest Regional Publishing, June 1, 2024

After years of negotiations and continued opposition from service providers, Illinois appears poised to prohibit employers from using a federal exemption that allows them to pay individuals with disabilities less than the minimum wage.

The federal Fair Labor Standards Act of 1938 established minimum wage law, but created an exemption for businesses, rehabilitation and residential care facilities to pay disabled workers less than minimum wage if they obtain a special certificate permitted in Section 14(c) of the law. This “commensurate wage” is based on the worker’s individual productivity in proportion to the wage and productivity of workers who do not have disabilities but are performing the same or a similar task.

Disability providers in Illinois offer various programs aimed at helping individuals become as independent as desired by teaching essential life skills. Some provide “sheltered work,” which is employment outsourced by a business to a facility with a 14(c) certificate. The facility pays their workers the commensurate wage, rather than minimum wage.

House Bill 793, which passed the House 78-30 on Thursday night, would prohibit companies from holding 14(c) certificates beginning in 2030 – a timeline that was extended in a late amendment to garner further support, including from Republicans.

The measure would also add certificate holders and research partners – including the Illinois Council on Disabilities – to the existing Employment and Economic Opportunity for People with Disabilities task force that will aim to ensure the transition works effectively. It also creates a $2 million transition fund, with money already appropriated to the Illinois Department of Human Services, to partially subsidize providers implementing shelter work alternatives.

It now heads to the Senate, where it will need to be read on three separate days before it can pass. It’s unclear how long the Senate will remain in Springfield before it adjourns its spring session, making it possible that the measure will have to wait until the fall veto session or later until it can be moved to the governor’s desk.

Advocates, including House sponsor Rep. Theresa Mah, D-Chicago, said eliminating 14(c) certificates would build upon rights granted to people with disabilities in previous decades by giving them higher paying and more rewarding employment.

Andy Kistler, executive director of a sheltered workshop in southern Illinois called Community Support Systems, said it pays its workers commensurate wages between 20 percent and 100 percent of the wage a non-disabled fulltime employee would earn at the same job.

Kistler said there’s no “litmus test” for deciding when someone might be ready to move from sheltered work to more traditional or “community integrated employment,” leaving it up to the individual and the skills they possess.

“The individual served may simply say, you know, ‘no, I don’t want to work in the community – I’m fine here, I feel safe here, I have all my support needs met here,’” Kistler said.

Longtime advocate for people with disabilities and an opponent to previous attempts to end sheltered work, Rep. Charlie Meier, R-Okawville, expressed concern that phasing out 14(c) workshops would force layoffs of provider staff as well as workers with disabilities – leaving those who might not be able to find community integrated work without a job.

In an interview with Capitol News Illinois, Meier said the $2 million transition fund “is not anywhere near enough,” and he wanted more time to negotiate – although he ultimately voted for the measure after agreeing to do so in response to a late amendment addressing some of his concerns.

“Do we risk letting this bill go and not have these changes and being forced through and nobody being protected,” Meier said. “Or do we take the five-year leap and stay on their backs and make sure we do it correctly?”

The amendment sought by Meier would ensure the task force at least partially focuses on aging adults taking part in sheltered work who are thought to be some of the most vulnerable to the measure’s potential fallout.

While Meier said he did not like the bill passed Thursday, he acknowledged it allows time to ensure a smooth transition.

“I will be watching everybody and what’s going on closely,” Meier said.

Read the full article here

Breaking News, June 6, 2024: Bill eliminating the subminimum wage for workers with disabilities failed to pass the General Assembly ahead of its May adjournment, although sponsors say they hope to pass it when lawmakers return in the fall.

Read the article here

Maine - Scarborough Program for Young People with Intellectual Disabilities is Set to Close

By Joe Lawlor, Portland Press Herald, June 1, 2024

Rachel Williams said her daughter Caitlin is thriving in a residential program for children and young adults with intellectual disabilities at the Morrison Center in Scarborough.

"A controlled, structured environment like what they have at the Morrison Center is what Caitlin thrives in," said Williams, whose daughter has Down syndrome and behavioral conditions that can result in self-harm. After 2 1/2 years in the Scarborough home, her daughter is now less likely to injure herself, Williams said.

But the residential program at the Morrison Center is closing soon, leaving Williams and other families scrambling to find help. Caitlin Williams, 20, is one of eight clients who now must find alternative living arrangements by July 8.

The Morrison Center is one of a number of similar programs that have closed in recent years, largely because of financial pressures and labor shortages. The state had about 900 residential beds for children about a decade ago, but that's dwindled to about 250 beds, said Danielle Loring, executive director of the Morrison Center.

Loring said the Morrison Center, which also offers day programs for children and adults, could no longer hire enough staff to keep the program going because the reimbursement rates paid by the Maine Department of Health and Human Services are too low. Loring said reimbursement rates improved recently, but not enough to be able to attract and retain the staff needed to run the program.

"This is a systemic issue across the state," Loring said. "These are amazing kids who deserve the best care. But unfortunately, from a financial perspective, this was unsustainable."

Continued

New York - Gov. Hochul is Leaving Developmentally Disabled NY-ers Behind

By Roberta Bernstein and Heather Ash-Burroughs, The New York Post, June 1, 2024

Nearly five years ago, a nonprofit-run group home with room for six young adults with intellectual and developmental disabilities (IDD) made plans to open in Westchester County, N.Y. With group homes closing and waitlists growing, the new house, a place where these individuals could thrive in a safe and supportive environment, was the rare success story. It was also a beacon of hope for aging parents desperately worried about where their children would live out their lives.

Despite fierce opposition from the well-to-do community, often tinged with nimby-ism, the house was cleared to open. But it then faced an even more challenging issue: the hiring of Direct Support Professionals (DSPs), the people who deliver essential support to those with developmental disabilities. A severe statewide shortage of these trained caregivers — which has reached crisis proportions and affects countless individuals — meant the house did not open fully staffed. To this day it still can’t accommodate all six residents. 

DSPs, who are part of the national Direct Care Worker sector, provide crucial support for individuals in a variety of settings. They assist with daily living skills, oversee recreational and educational activities, shop, cook, administer medications, manage behaviors and much more. It’s a difficult, extremely rewarding job staffed by dedicated professionals, but many are dropping out and potential new ones opting out because it doesn’t pay a living wage.  

The New York State 2024-25 fiscal year budget fails to change this. In fact, it effectively gives DSPs a pay cut. 

Despite being the backbone of the developmental disability care economy, many DSPs, who often work double and triple overtime to make ends meet and who are disproportionately represented by women of color, receive a meager starting wage of $16.13 per hour. Advocates, allies, and a handful of vocal legislators fought for the budget to include a 3.2% cost of living adjustment (COLA) for DSPs — knowing most if not all of it would go to nonprofit agency costs — as well as for a critical $4,000 wage enhancement to go directly to DSPs’ annual earnings. Instead, the budget allots a 2.8% COLA, which doesn’t even cover inflation, and omits the wage enhancement.

The Governor knows the numbers. Chronic shortages in state funding have led to nonprofit provider agencies, which serve 85% of needed developmental disability services in the state, being unable to offer the competitive wages needed to recruit and retain staff. This has resulted in a 31% turnover rate and nearly 20,000 unfilled positions statewide. Turnover costs for non-profit providers have risen to more than $100 million annually.

Continued

Arkansas - DHS to End Medicaid Managed Care Dental Program, Return to Fee-For-Service

By the staff of Tax Business andPolitics, June 3, 2024

The Arkansas Department of Human Services (DHS) announced Monday (June 3) that it will end its Medicaid managed care dental program and return beneficiaries who qualify for dental coverage to the Medicaid fee-for-service program beginning later this year.

DHS expects to launch this program on Nov. 1, 2024, and efforts to support this change are being prioritized immediately, it said.

The dental managed care program within Arkansas Medicaid has been in effect since Jan. 1, 2018, and as of this month serves 572,047 beneficiaries.

“After careful consideration of dental service utilization, the total program expenditures, and the work underway to ensure a holistic, efficient, and sustainable Medicaid delivery system for all Arkansans, DHS has determined that fee-for-service for Medicaid dental services is both the best and most cost-effective option at this time,” DHS Secretary Kristi Putnam said. “This change shifts management of the program to the DHS Division of Medical Services (DMS), where we will operate it efficiently and effectively. This transition makes better sense for Arkansas patients, dentists, and taxpayers.”

Sen. Missy Irvin, R-Mountain View, chair of the Senate Public Health Committee, said she agreed with the DHS decision.

“I believe DHS made the appropriate decision after evaluating the delivery system, contracts and drop in utilization. Ultimately, it’s about making sure the qualified Arkansans who are being served can get the quality care they need, and for the state to utilize the most efficient and effective delivery system to provide that service. The goal is to improve the dental health of Arkansans. Clearly they have evaluated the system with that goal in mind and made a decision to return to paying dentists directly for the care they provide,” Sen. Irvin said.

Continued

Pennsylvania - Opinion: Families of Disabled Anxious as Budget Discussions Begin

By Gary Blumenthal, Keystone News, June 5, 2024

For some, June heralds the joys of summer, a season of warmth, sunshine, and leisurely days. But for families of individuals with Intellectual Disabilities/Autism (ID/A) and Direct Support Professionals (DSPs), it’s a month of heightened anxiety, wondering if the Pennsylvania General Assembly will finally pass Governor Josh Shapiro’s FY 24/25 budget. This budget, crucial for the well-being of thousands, seeks to address years of underfunding that have left the disability community in a state of crisis.

The Jennings family is a poignant example of the daily struggles faced by many. Cindy Jennings, along with her son Matthew and her mother Judy, have become de facto caregivers due to the lack of DSPs willing to work for the current, inadequate rates. Their story is a testament to the human impact of systemic failures that have plagued our state for decades.

The underfunding of ID/A programs has resulted in a waiting list of over 6,000 individuals, each with dire and critical needs. These individuals have been determined eligible for immediate services and supports, yet remain in limbo due to the state’s inability to adequately fund and support the necessary services. The Department of Human Services (DHS) and the Office of Developmental Programs (ODP) have never been fully funded to meet the needs of eligible individuals under state and federal regulations.

This crisis is exacerbated by the insufficient wages paid to DSPs, making it nearly impossible to recruit and retain the professionals needed to deliver essential services. Many DSPs earn wages comparable to those in unskilled jobs, despite the demanding nature of their work, which includes extensive training and the ability to perform life-saving measures. Consequently, turnover rates in provider programs often exceed 30-40%, with vacancy rates soaring to 80% during the pandemic.

Governor Shapiro, along with DHS Secretary Dr. Val Arkoosh, has traveled the state, meeting with families, advocates, providers, and legislators to garner support for the proposed $217 million investment in raising DSP wages and an additional $34 million to begin a five-year plan to eliminate the waiting list. The Governor’s commitment to updating the data used to set rates for home and community-based services (HCBS) marks a significant step towards addressing this crisis.

There is bi-partisan support for the ID/A budget request. On behalf of InVision Human Services, I have met with both Republicans and Democrats. These elected officials understand this is a strong human need and regardless of party have heard from their constituents urging their support for this proposal.

The story of the Shaffer family further underscores the urgency of this matter. Sandi Shaffer, mother to Kate, an individual with an intellectual disability, has been forced to give up her career and dip into her retirement savings to provide the care that the state has failed to support. Despite Kate qualifying for over 65 hours of support per week, the lack of available DSPs has left Sandi struggling to balance caregiving with part-time jobs. This is not an isolated incident but a common narrative among families across the Commonwealth.

Governor Shapiro’s budget request offers a glimmer of hope for these families. It is a bold step towards ensuring that individuals with ID/A receive the support they need to live fulfilling lives within their communities. However, this should not be a one-time fix. Sustainable funding, with annual adjustments to keep pace with inflation, is essential to prevent future crises and ensure the stability of these vital services.

As a former legislator and federal disability official, I urge the Pennsylvania General Assembly to support Governor Shapiro’s ID/A budget request. The lives of thousands of individuals with disabilities and their families depend on it. Let us work together to create a more inclusive and compassionate Pennsylvania, where every individual, regardless of ability, can thrive.

Continued

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

VOR SUPPORTS:

S.4120 / H.R.,7994 - The Long-term Care Workforce Support Act - This bill would increase FMAP and offer grants to all DSPs and caregivers for the elderly and for people with I/DD and autism. VOR worked with members of the Senate Aging and Diability Policy Committee and other peer organizations to improve this bill from its original form. It is not perfect, and it contains one major flaw to which we continue to object (the permanent reauthorization of the Money Follows the Person Rebalancing Demonstration Program) but we will continue to work to improve this bill and remove its flaws.

S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

H.R.7267 - Disability Community Act of 2023 To amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental disabilities.

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.

S.7302 - The Credit for Caregiving Act of 2024 Sen. Michael Bennett (D-CO) This bill would amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers. In the case of an eligible caregiver, there shall be allowed as a credit against the tax imposed by this chapter for the taxable year an amount equal to 30 percent of the qualified expenses paid by the taxpayer during the taxable year to the extent that such expenses exceed $2,000. The tax credit is not to exceed $5,000 per year.

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

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

H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would 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.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.

VOR OPPOSES:

H.R.8109 - To Make Permanent the Money Follows the Person Rebalancing Demonstration Program. MFP has been used to erode the ICF system. We call for congressional hearings, studies by the GAO, and audits by the Congressional Budget Office before any action should be taken to reauthorize this program.

S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.

S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.

S.1193 / H.R.2708 - The Latonya Reeves Freedom Act of 2023

Sen. Michael Bennett (D-CO) / Rep. Steve Cohen (D-TN) Allegedly written and strongly supported by ADAPt and other self-advocacy groups, this is a watered-down version of the Disability Integration Act. It is strongly biased against care in larger congregate facilities, and falls just short of seeking the elimination of ICFs.

VOR HAS SIGNIFICANT CONCERNS WITH:

S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) 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.

S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.

S.3118 - The HCBS Relief Act of 2023

Sen. Boby Casey (D-PA) A bill to provide for an emergency increase in Federal funding to State Medicaid programs for expenditures on home and community-based service. This bill, like others above, only provides funding for people receiving Long-Term Services and Supports through HCBS, denying any support for people in nursing homes or ICFs.

VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their 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.



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