October 18, 2024

VOR's Weekly News Update

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Once again, we are happy to open our newsletter with an article from our good friend Amy Lutz.

The Wrong Way to Help Disabled Kids

By Amy S.F. Lutz, Persuasion, October 14, 2024

"Many people want to abolish Residential Treatment Facilities. But for some severely disabled kids, being away from home is best."

My friend Kim has a 13-year-old daughter, Ella.1 Ella has Coffin-Siris syndrome, a spectrum disability that includes intellectual disability, missing fingernails on pinkies and little toes, and behavioral manifestations in 85% of cases. For Ella, these included punching, kicking, pulling hair, biting, eye-gouging, choking, and slicing her hands with paper so she was always bleeding from dozens of tiny cuts.

Finding the right educational setting for Ella has been a challenge, to say the least. Her journey has taken her from a so-called “inclusive” classroom, where she sat separately from the other kids to do her work, to an autism school, where she did no academics at all and her aggressive behavior actually worsened. Kim thought she found the perfect solution in a charter school that offered an inclusive classroom with full-time support—until one of the aides slapped Ella across the face during a meltdown. Ella, who is nonverbal, typed on her iPad that she was never going back and wouldn’t come out of her room for two weeks.

Kim was desperate. The local school for severely autistic kids recommended by her district refused Ella admission after she attacked staff during a site visit. The therapists that worked with Ella at home had all quit, one after Ella punched her so hard that she burst her eardrum. And Kim herself was always bruised and scratched. “It’s simply not tenable to get beat up every day,” Kim told me. “Nobody should live like that.”

Kim was determined to find something that her school district told her didn’t exist: a school that specialized in the dually diagnosed—kids like Ella with autism and mental health issues—and that could treat her daughter’s violent behavior while providing a diploma track. And she did find one—a Residential Treatment Facility, or RTF, halfway across the country. Kim had to sue her school district to pay for the placement, but they didn’t put up much of a fight. They had nothing else to offer Ella anyway.

What is an RTF?

The acronym RTF seems self-explanatory: a place where people (often children) live while they are receiving treatment for something. In practice, this covers a wide range of scenarios, from “troubled teens” to profoundly autistic students, many of whom routinely and significantly harm themselves and their caregivers.

As the parent of a profoundly autistic adult son, my interest lies in this latter population. I have great sympathy for parents desperate to keep their neurotypical children from wrecking or even ending their lives through truancy, vandalism, or drugs. But I can’t say whether residential treatment is necessary or appropriate for such kids. I do, however, know many families who made the heartbreaking decision to send their profoundly autistic kids to RTFs as the “least-worst out of terrible options”—as Kim described it—only to watch them flourish in intensive, highly structured environments that could never have been duplicated at home.

Unfortunately, 2024 has not been a good year for RTFs. In March, Netflix premiered the first episode of The Program: Cons, Cults and Kidnapping, which recounts the traumatic experiences of filmmaker Katherine Kubler at the Academy at Ivy Ridge, a New York RTF, in 2004. Kubler says that her father shipped her off to Ivy Ridge after she was expelled from her Christian boarding school for being caught with a Mike’s Hard Lemonade. There, she and her peers were frequently subjected to physical restraints, solitary confinement, and food deprivation—strategies that were designed to “break” the kids. “They tried to murder children’s souls here,” Kubler reports from the now-abandoned campus, where she returned to film her documentary.

Two months later, ProPublica launched its own series exposing claims of abuse and neglect at Shrub Oak, a different New York RTF that treats autistic children from all over the country. The reporters uncovered “accusations of possible abuse and neglect: unexplained black eyes and bruises on students’ bodies, medication mix-ups, urine-soaked mattresses and deficient staffing.” Then, in June, the Senate Committee on Finance released the report of their two-year investigation into RTFs, whose title basically sums up the building public consensus on these programs: “Warehouses of Neglect.” The Committee concluded that “children suffer routine harm inside RTFs… includ[ing] sexual, physical, and emotional abuse, unsafe and unsanitary conditions, and inadequate provision of behavioral health treatment.”

Needless to say, the tragic outcomes documented across these platforms are completely unacceptable and demand serious attention. RTFs struggle with the same staffing challenges and—for those that depend on state and federal funding—low reimbursement rates as other providers in this sector, like group homes for intellectually disabled adults or nursing homes. No doubt some private pay outfits—like the one Kubler’s father paid $60,000 to basically incarcerate her for fifteen months—are little more than predatory scams and should be shut down.

But lost in the pile-on has been one simple truth: some children can’t be safely cared for at home. As Senator Ron Wyden, Chairman of the Finance Committee, threatens to defund RTFs, and as ProPublica celebrates its impact with a banner on its website announcing that three states are no longer sending students to Shrub Oak because of its reporting, it’s critical to ask: what about those kids and their families?

Continued

Wage disparities will continue to make it difficult for employers to attract, keep direct care workers: PHI

By Kimberly Bonvissuto, McKnight's Senior Living, October 18,2024

The demand for direct care workers in long-term care will continue to increase with the rapidly growing aging population, but employers will continue to struggle to recruit and retain enough workers due to low wages that have “barely” increased over the past decade, according to a new paper released by PHI.

Direct care workers include personal care aides, home health aides and nursing assistants working in settings such as assisted living communities, nursing homes and home health agencies. The paper analyzed wage disparities between direct care workers and similar occupations in 2023, as well as trends in the wage gap between those two groups between 2014 and 2023.

According to author Jiyeon Kim, PhD, a PHI research associate, direct care workers earned a median hourly wage of $16.72 in 2023, a figure that has “barely” increased over the past decade despite growing demand for workers. Low wages lead to high poverty rates in this sector and drive many job seekers and existing workers out of direct care and into other industries, Kim wrote.

In the report, Kim presented new evidence on the inadequacy of direct care wages relative to wages in competitive industries, such as retail and fast food. In some states, the wage gap between direct care workers and competitive industries increased in the past decade, making it even more difficult for operators to recruit and retain a stable direct care workforce.

In all 50 states and Washington, DC, median wages for direct care workers were lower than median wages for similar occupations, according to the report. The hourly wage gap ranged from $0.46 in Rhode Island to $5.56 in Texas. In 39 states, the wage gap was at least $2 per hour, and in 19 of those states, it exceeded $3 per hour.

Continued (for more information, see articles below from PHI)

Competitive Disadvantage: Direct Care Wages Are Lagging Behind—2024 Update

Fact Sheet from PHI

This factsheet presents an analysis of wage disparities between direct care workers and similar occupations across the United States in 2023, as well as trends in this wage gap from 2014 to 2023.

Click here to download PHI's Fact sheet on Direct Care Wages

Growing Demand for Direct Care Workers Underscores Pressing Need to Address Job Quality Challenges

September 2, 2024 PHI National Organization

Our nation’s population of older adults is growing dramatically, bringing the essential role of direct care workers into sharp focus in recent years. Direct care workers are foundational to the care economy,

providing vital care and support to older adults and people with disabilities. However, PHI’s latest annual research report reveals that despite their indispensable contributions, direct care workers continue to face significant challenges that require urgent attention if we are to meet growing demand for their services.

PHI’s new report, “Direct Care Workers in the United States: Key Facts 2024,” offers a comprehensive, up-to-date overview on direct care workers. Our report delves into the demographic makeup of the workforce, outlines their roles and responsibilities, examines critical issues with the quality of their jobs, and projects future job openings in the field. It provides in-depth analyses of three key segments within this workforce: home care workers, residential care aides, and nursing assistants in nursing homes.

Unprecedented Workforce Growth and Escalating Demand

The report underscores the critical importance and rapid expansion of the direct care workforce in the United States’ long-term care system.

Over the past decade, the direct care workforce has grown from 3.5 million workers in 2014 to over 5 million in 2023—an addition of more than 1.5 million new jobs. Demand will only increase in the future, with the number of adults aged 65 and older projected to increase from 57.8 million in 2022 to 88.8 million by 2060.

As a result, employment projections indicate that the direct care field will add more than 860,000 new jobs from 2022 to 2032, outpacing job growth in any other single occupation in the country.

When factoring in occupational transfers and labor force exits, the analysis reveals an even more staggering figure: an estimated 8.9 million total job openings in direct care from 2022 to 2032. This highlights a strong need for improvements to the quality of direct care jobs, to improve workforce recruitment and retention.

Continued

Could worker cooperatives be a fix for the home care worker shortage?

By Liz Seegert, Harvard Public Health, October 16, 2024

“We have to build a caregiving infrastructure that treats workers and beneficiaries well.”

Demand for home care workers is soaring, and the industry is struggling to keep up. Analysts project a steep care worker gap, with 4.6 million unfilled jobs by 2032. The industry is in turmoil over a combination of high turnover and low reimbursement rates from Medicare and Medicaid, which account for 73 percent of the industry’s $123.4 billion annual revenue, according to a 2023 analysis from PHI, an elder care services research and advocacy organization

But the shortage is driven by more than just billing.“There just aren’t enough workers entering or staying in the home care field, and that’s driven by poor job quality, low wages, and the lack of respect and recognition for the work they do,” says Katrina Kazda, vice president of home care innovations for the ICA Group, which provides home care cooperatives with technical assistance, coaching, and training.

“Then you’ve got all the structural layers of racism, classism, sexism, that layer into that,” she added, referring to social and economic policies and practices that have the effect of channeling women, immigrants, and people of color into low-paying service jobs.

Worker cooperatives— a business model in which workers share in decisions and profits—are emerging as a promising solution to the problem. Research by the ICA Group has found employee owners earn higher average wages, while coops report higher productivity and higher retention than traditionally structured companies.

Currently there are 22 home care cooperatives in 10 states, according to Kazda. But the pace has been quickening, she says, and more than a dozen startups are underway.

Adria Powell, executive director of Cooperative Home Care Associates (CHCA) in the Bronx, New York, understands first-hand the difference this model can make. Her mother helped found the cooperative in 1985, when the idea of worker-owners was nearly unheard of.

Powell says CHCA were seen as pioneers back then in part because they provided four times the state required-training for home health aides. And years before its competitors, CHCA created a career path for employees, offered higher wages, established a system for raises based on longevity, and offered benefits including health insurance, paid vacation, and holiday and overtime pay.

The agency now has more than 1,600 members working across New York City. They have an equal voice in how the coop runs because they each own a share, which they purchase for $1,000. They pay the first $50 up front, either as a lump sum or in installments of typically five or ten dollars at a time. CHCA loans them the balance, which members repay interest-free through payroll deductions over five years.

After a year, any member can run for the board of directors. All members have a say in how the coop’s earnings are reinvested and whether it will pay dividends. CHCA’s turnover rate, of 25-28 percent, is well below the industry average of 80 percent. CHCA also pays amore than minimum wage, and its workers are unionized.

“People have voice and agency in the organization,” Powell says.

Coops face organizational challenges, such as managing the ebb and flow of care needs, providing enough hours for all workers while still generating enough revenue to distribute profits to employee-owners. Like most home care organizations, the group struggles with low Medicare and Medicaid reimbursement. Changes in insurance coverage, especially managed care, have resulted in fewer reimbursed daily home care hours. That directly impacts CHCA’s bottom line and the number of hours they can guarantee their workers. To fill the cash flow gap, CHCA also works with private clients, who can pay more, but the private market is highly competitive, and it can be difficult to find enough clients in the organization’s service area. “When we lose folks, it’s because we can’t provide enough work for them to have a sustainable living.”

Continued

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As Election Nears, Presidential Candidates Largely Mum On Disability Issues

by Michelle Diament, Disability Scoop, October 17, 2024

People with disabilities are poised to be a powerful voting bloc in the upcoming election, but issues important to this population are getting little attention, advocates say.

A report out this week from Rutgers University shows that an estimated 40.2 million people with disabilities will be eligible to vote in the Nov. 5 presidential election. That’s more potential voters with disabilities than eligible voters who are Hispanic or Black.

Moreover, the data indicates that a third of all eligible voters are either people with disabilities or individuals who live with someone who has a disability.

Continued

One of Our Nation’s Fastest Growing Jobs Is Missing from the Electoral Debate

By Jodi M. Sturgeon, PHI National Org, September 11, 2024

We are little more than 50 days out from a consequential federal election. On a personal note, it feels like one of the most pivotal elections of my lifetime, one that will be of vital importance for direct care workers and the people and families they support.

While their solutions differ sharply, both political parties recognize the needs of direct care workers, family caregivers, and consumers in their official policy platforms. The 2024 Republican Party Platform speaks to addressing “disincentives that lead to Care Worker shortages, and [supporting] unpaid Family Caregivers through Tax Credits and reduced red tape.” The 2024 Democratic Party Platform identifies “supporting family caregivers, and [investing] in care infrastructure by raising wages and the quality of care worker jobs.”

During last night’s presidential debate, candidates offered differing visions about healthcare. When Vice President Harris said, in speaking about the Affordable Care Act and Medicare, that “access to health care should be a right and not just a privilege of those who can afford it,” she spoke directly to equity issues central to the work of PHI and other advocates.

However, in articulating their contrasting visions for U.S. healthcare, neither Vice President Harris nor former President Trump focused on direct care workers and the essential role they play in supporting millions of older adults, people with disabilities, and family caregivers in our nation. And neither spoke to demographic changes in our aging nation that will place significant future burden on both paid and unpaid caregivers, and make direct care jobs one of the fastest growing U.S. occupations over the next decade… and beyond.

Meeting growing demand will require concrete investments in high-quality direct care jobs, with quality training, fair compensation, quality supervision and support, respect and recognition, and real opportunity.

Just as it is key for healthcare-focused dialog to spotlight direct care workers, it is just as critical that labor-focused discourse factors direct care jobs. Last week, through his “Good Jobs” Executive Order, President Biden took the laudable step of promoting family-sustaining wages, workplace safety, access to essential benefits, and greater opportunities to join unions. Yet, direct care jobs went unmentioned, largely driven by the fact that they do not fully meet the threshold laid out within the Administration’s Good Jobs Principles. This is a missed opportunity to prioritize investment in—and bring new opportunities to—a workforce that make essential contributions to our economy every day.

Continued

With Record Special Ed Enrollment, Schools Face ‘Dire’ Shortage Of Trained Staff

by Kristen A. Graham, The Philadelphia Inquirer, via Diasability Scoop, October 15, 2024

The nationwide teacher shortage is well documented. But another category of school workers is also in alarmingly short supply.

Special education assistants — key school staff who support students with disabilities — are highly sought after in many schools and districts, according to school leaders and staffing agencies.

In Philadelphia, the shortage is acute. While the district has filled 97% of its teacher vacancies, its special education assistant fill rate is 83%, with 564 unfilled jobs across its 216 schools.

But the problem isn’t just limited to Philadelphia or to urban districts. In the well-regarded Central Bucks school system, one middle school reported a third of its personal care assistant positions — eight of 24 — vacant at the start of the school year.

One reason for the vacancies? Demand. The number of students classified as needing special education services in the U.S. is at an all-time high — for 2022-23, the most recent year for which statistics are available, 7.5 million students, or 15% of all public school pupils, had disabilities. Ten years prior, there were 6.4 million students with disabilities.

“This has a direct impact on me, my school, my students,” Lenape Middle School special education teacher Angelo Menta told the Central Bucks district’s school board in September, describing the situation as “dire.”

With aides reassigned to children with the most severe needs, Menta said, other students who also need support may start “slipping through the cracks.”

A Central Bucks spokesperson said the number of Lenape vacancies has since dropped to six, and the district was confident student needs were being met.

Steven Yanni, the Central Bucks superintendent, said in a recent interview that while the district had largely been spared from ongoing teacher shortages, “where we’re really having a shortage is in our support staff.”

“They’re really, really hard jobs,” with tasks ranging from helping kids use the bathroom and assisting with feeding tubes, to navigating for students with impaired vision, Yanni said. Like a number of districts, Central Bucks’ special education population has “exploded” over the past few years, he said, and the district has added dozens of support staff positions.

But it’s becoming harder for schools to compete with retail companies, Yanni said — noting sign-on bonuses at companies like Home Depot and pay rates of $24 to $25 an hour. (Central Bucks’ starting rate for a personal care assistant is $18.43 an hour, though current staffers earn between $18.62 and $24.10).

Arthur Steinberg, president of the Philadelphia Federation of Teachers, characterized the special education shortage in the city as “horrific.”

Continued

States Told Not To Skimp On Medicaid Coverage For Kids With IDD

by Michelle Diament | October 14, 2024

Medicaid programs nationwide are supposed to offer a basic menu of services to children with developmental disabilities, but some states have been skirting these responsibilities. Now, federal officials are amping up pressure to comply.

The Centers for Medicare & Medicaid Services recently issued new guidance detailing what are known as Early and Periodic Screening, Diagnostic and Treatment, or EPSDT, requirements. The mandate is designed to ensure that children participating in Medicaid and the Children’s Health Insurance Program have access to a broad array of prevention, diagnostic and treatment services.

For kids with developmental disabilities, that can mean having access to everything from well-child visits and dental care to mental and behavioral health services, medical specialists and much more.

The 57-page letter to state health officials outlines strategies and best practices for meeting the EPSDT standard.

“The implementation of the EPSDT requirements, in partnership with states, is vital to the tens of millions of children in the nation who are covered by Medicaid and CHIP. We’ll keep working until every child can get the care they need, when they need it,” said CMS Administrator Chiquita Brooks-LaSure.

In particular, the guidance notes that EPSDT requires states and managed care plans to maintain an adequate number of providers including pediatric specialists and children’s hospitals. They also must have clear procedures to allow children access to out-of-network or out-of-state providers as needed so that children with disabilities or other complex health needs can have prompt access to medically necessary services.

“For children whose medical needs cannot be met by in-state providers and for whom the state has identified an out-of-state provider to deliver medically necessary services, states should screen and enroll out-of-state providers within an abbreviated timeframe to help ensure that children can access care in a timely fashion,” the letter states.

Continued

Disability advocate group working to serve Helene victims after Asheville office damaged

By Grace Hayba, WRAL News, October 11, 2024

The Arc of North Carolina's headquarters in Wake County is bustling with staff working to connect people with vital resources across North Carolina.

The building at 353 East Six Forks Road helps manage aid and advocacy services for thousands of people with intellectual and developmental disabilities across the state.

“It has been anywhere from 5,000-6,000 people, sometimes a little higher,” shared Holly Watkins when asked how many people the organization serves.

Watkins shared operations were heavily impacted by Helene with 101 staff members and more than 700 families impacted. The organization’s regional office in the Biltmore Village area of Asheville was destroyed.

“There were folks that were in their homes,” shared Watkins. “We’ve heard a couple stories about families that have had their homes washed away, their neighbors died in the storm, and they had nothing. They literally had to flee in what they were wearing.”

In the immediate aftermath of the storm, Watkins shared most resources of the organization’s Crisis Response Team were spent connecting families with basic needs: food, water and shelter.

Watkins emphasized medical care for those with disabilities was also of great importance.

“Individuals with intellectual and developmental disabilities, many of them are vulnerable. Many of them may have a condition that can exacerbate other health conditions,” shared Watkins. “Especially when you go through a natural disaster, there is a lot of concern about public health.”

Even with staff displaced themselves, Watkins shared employees were “incredible,” working around the clock to continue serving families in impacted areas.

Watkins said resources have also been spent on making sure caregivers receive the support they need.

“Whole-person health is something that is really important to us. Part of care management is when we go into a home and working with the individual that we serve, we’re looking at the whole family and we’re looking at the caregivers,” she said.

Watkins continued, “Does dad need help getting a job? Does mom need help getting some medical needs met? Are there adequate food resources?”

The organization is now working to help impacted families apply for FEMA and other financial aid.

Watkins also shared the organization is looking at ways to help replace medical equipment, like wheelchairs, that families lost in Helene.

“Mental health is another thing I think is going to be absolutely critical in addition to care management,” she shared.

The organization said it is taking things “one day at a time.”

“This is a disaster, the likes of which we’ve never seen before,” Watkins said. “This is going to be a very, very long marathon. It is not a spring.”

The organization encourages those looking to help to donate financially to its Hurricane Helene Relief Fund.

Watkins shared money will be used to help staff who were directly impacted continue to be financially supported while they rebuild.

Continued

New Jersey - Guardianships for those with disabilities draws debate

By Joanna Gagis, NJ Spotlight, October 14, 2024

"Some advocates for those with disabilities want less restrictive guardianships or none at all"

Guardianship is a legal process that’s handled through the courts, giving one legal authority over someone who’s unable to make decisions for themselves and often with intellectual or developmental disabilities.

Now that longstanding process is coming under new debate.

“If you have a guardian, that person has the right to decide everything for you,” said Kelly McGuire, staff attorney for Disability Rights New Jersey. “There’s very few rights that you actually retain under guardianship.

“I see it in my clients, that people subject to guardianship will come to me and say that they don’t want to be subject to guardianship anymore,” she said. “Or they want a less restrictive guardianship or less restrictive guardian, because these tend to be abusive relationships. Not all guardians are abusive, but it’s a very easily abused system.”

Disability Rights New Jersey represents many individuals with disabilities, often fighting guardianship cases in court.

Among the clients is Peter Brumlick, who has autism and spent three years and close to half a million dollars in court trying to get out from under his mothers’ petition for guardianship. The appellate court recently ruled on Brumlick’s behalf, but it’s the petition process that has him concerned for others like him.

Yet a new bill in the Statehouse would further streamline the process, and advocates are concerned given how easy it is to apply for guardianship already — and how hard it is to get out from under a request, let alone an actual guardianship appointment.

The bill would allow someone to request guardianship of a minor six months before that person turns 18. It was first introduced by state Assemblyman Hal Wirths (R-Sussex) and is now sponsored by Assemblywoman Carol Murphy (D-Burlington), who says it’s intended to keep the most vulnerable from falling into a care gap where family can’t advocate for them.

“A lot of times, our folks with disabilities, once they turn 18 it’s not automatic that their parents will become their guardian,” said Murphy. “So in order to avoid that break in the guardianship, it allows that parent to file early before they turn 18.”

She does want to see people who don’t need guardians to be able to live independently and seek help when they need it. But this bill puts the onus on those who would have guardianship placed over them to prove that have capacity to care for themselves.

“We shouldn’t start from the position that people are sort of guilty until proven innocent,” said Paul Aronsohn, the state Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families. “If someone is seeking guardianship over another individual, I think it’s incumbent upon them to make the case, and make it in a thoughtful way.”

There’s another option here – one that 22 other states have adopted – that calls for what is termed supported decision-making, where the person with a disability assigns power of attorney to a caregiver so they can participate in things like healthcare and banking.

Passaic County Surrogate Judge Zoila Cassanova approves guardianship requests, and she too is in support of a more coordinated, centralized system that puts supported decision-making before guardianship.

“I feel we should try to look at the least restrictive means,” said Cassanova. “Ultimately, we should move forward as a state in how to support individuals, meet them where they are, and work on their strengths with the right support. Rather than automatically take away a person’s right and their autonomy.”

Continued

Video also available here (via YouTube)

Texas - How School Shooting Fears Led To A 10-Year-Old Boy With Autism Being Handcuffed

By Talia Richman, The Dallas Morning News/via Disability Scoop, October 16, 2024

The classroom was loud that day, and Hasan doesn’t like loud.

So the 10-year-old boy decided to go on a walk through Frisco’s Bledsoe Elementary. His specialized education plan — required because of his autism — allowed for sensory breaks.

On his way out the door, he said something. His fifth-grade teacher quickly reported what she heard on the morning of March 29, 2022: “Maybe I should bring a gun to school, then maybe they will listen to me.”

These words — which his parents say were grossly misunderstood — would derail Hasan’s childhood and education for the next two years. They would plunge his family into a haze of anxiety, costing tens of thousands of dollars to navigate the juvenile justice system. Ultimately, they would force them to question what it means to raise a child in America.

“The way everybody handled the situation was wrong,” his mother said. The family filed a lawsuit against Frisco ISD Sept. 30.

One of the complex consequences of school shootings is young children are increasingly facing criminal repercussions for language deemed threatening, state data shows.

Hasan was arrested and charged with a Class A misdemeanor for the threat of exhibiting a firearm at school. The charge doesn’t require the person to display a gun or to have access to one.

He became one of roughly 1,110 Texas children referred to the justice system for this misdemeanor charge in the last six fiscal years, according to state juvenile justice data. More children were referred for this charge in 2023 — after the Uvalde massacre — than in any other recent year.

About half of the cases involved kids between 10 and 13 years old.

Civil rights advocates and juvenile attorneys can point to examples of kids, like Hasan, who have disabilities and may not fully understand the actions that land them in big trouble. They know young children sometimes say things they don’t mean.

Law enforcement officials say the stakes are too high to dismiss potential threats as jokes or misunderstandings.

“It goes without saying that concern for school safety is at an all-time high,” Frisco police spokesman Grant Cottingham said. “Every school threat is taken seriously and fully investigated.”

Some students who make threats have both the means and intent to carry them out. The recent case of a Georgia teen who opened fire at his high school — killing two students and two teachers — was a reminder.

In the weeks since that shooting, schools across the country faced a surge of reported threats. School officials and police have lamented photos of weapons and menacing words zooming across social media, launching police into overtime to track down what typically proved to be non-credible.

In September alone, police arrested at least 40 Texas students from elementary to high school because of threats. The details and outcomes of those cases may never become public because juvenile records are largely confidential.

In Hasan’s case, his parents provided The Dallas Morning News rare access to observe their son’s legal saga, providing a window into how such cases are handled and their impact on children.

The News reviewed Frisco school records and audio as well as psychological evaluations supplied by the family, along with court documents from the lawsuit against the school district. A reporter spent hours interviewing parents Tahmina and Mohammed at their home and accompanied them to court. They requested The News withhold their last name to shield their son from stigmatization. Hasan is identified by his middle name.

Frisco ISD and Frisco Police department officials declined multiple interview requests over several months about Hasan’s case but provided statements. They said they could not discuss specifics, citing ongoing legal proceedings and privacy law. Frisco is a booming suburb about 30 miles north of Dallas.

After his arrest, Hasan said over and over he didn’t want to hurt anyone, that he was being silly, that he would never bring a gun to school, that he didn’t know the police would come, that he was sorry.

On that March day, a school resource officer questioned Hasan before Tahmina learned her son was in trouble. When school officials contacted her, she rushed to the campus.

Tahmina watched as Hasan was loaded into a police cruiser in the Bledsoe Elementary parking lot. Handcuffs clanked around his skinny wrists.

Police fingerprinted the boy and took his mugshot. He stood just over 4 feet tall. Hasan wasn’t sure whether he should smile, like he normally would for a picture, or make a mean face. He said he thought mugshots were only for burglars or serial killers.

Tahmina couldn’t comprehend: Her family doesn’t own guns, so her son had no way of bringing a firearm to class.

School staffers were supposed to be well-versed in Hasan’s autism and how it shapes the way he speaks.

“Why,” Tahmina still wonders, “were they so quick to bring in the police?”

Continued

A New Law Affects Justice Involvement for People with Disabilities

By Zoë Jamail, Policy Coordinator, Disability Rights Tennessee,

People with disabilities face unique challenges when they have contact with the justice system. A recent change in Tennessee’s law may affect people with intellectual disabilities (ID), including those who also have mental illness. The new law increases confinement risks for this group. It applies a legal standard to people with ID that is based on misunderstandings about intellectual disabilities, mental illness, and people with disabilities in general.

This shift raises concerns about fairness and equal treatment under the law for Tennesseans with ID. It also highlights the need to educate lawmakers and the public about the realities of living with ID and mental illness.

A new law called “Jillian’s Law” changes how this process works for people with ID or mental illness who are charged with certain crimes, including non-violent ones. If a judge finds that someone is incompetent to stand trial based on ID or mental illness, the law now assumes these individuals are dangerous unless they can prove otherwise with very strong evidence.

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Jillian’s Law is named for Jillian Ludwig, an 18-year-old woman who was killed by a stray bullet while walking in a Nashville park. The alleged shooter had previously been prosecuted for assault with a deadly weapon. However, he had been released after court-appointed physicians found him incompetent to stand trial.

To avoid judicial (involuntary) commitment, the defendant must present “clear and convincing evidence” that they do not pose a risk of “serious harm.” This is a high standard that can be very difficult to meet, especially for someone who already can’t understand what’s happening in court.

If someone is found incompetent and can’t be made competent through treatment, a judge can only end their involuntary commitment by ordering them to receive mandatory outpatient treatment. However, it’s not clear what kind of outpatient treatment is available specifically for people with ID, or those who have intellectual disabilities in addition to mental illness.

The court also cannot order any community-based services unless the Department of Disability and Aging (DDA) says that funding is available for it. If there is no funding or no appropriate outpatient treatment, some people could end up stuck in treatment facilities and other settings (like jails or hospitals) for a very long time, sometimes even indefinitely.

Solutions

Jillian’s Law aims to prevent releasing people found incompetent to stand trial without supervision or services in the interest of public safety. However, there are better ways to protect our communities while still respecting people’s rights.

The law goes too far by assuming anyone found incompetent (for certain crimes) is dangerous, even for non-violent charges like vandalism. This unfairly shifts the burden of proof from the state to the person with a disability. It’s extremely difficult to prove that someone won’t do something, especially for someone who doesn’t understand court proceedings.

Putting people into treatment facilities or jail deprives them of their freedom, so we need to be very careful about how and when we do that. Making sure that people are only in jail or involuntarily committed when they should be is called “due process.”

To avoid judicial (involuntary) commitment, the defendant must present “clear and convincing evidence” that they do not pose a risk of “serious harm.” This is a high standard that can be very difficult to meet, especially for someone who already can’t understand what’s happening in court.

If someone is found incompetent and can’t be made competent through treatment, a judge can only end their involuntary commitment by ordering them to receive mandatory outpatient treatment. However, it’s not clear what kind of outpatient treatment is available specifically for people with ID, or those who have intellectual disabilities in addition to mental illness.

The court also cannot order any community-based services unless the Department of Disability and Aging (DDA) says that funding is available for it. If there is no funding or no appropriate outpatient treatment, some people could end up stuck in treatment facilities and other settings (like jails or hospitals) for a very long time, sometimes even indefinitely.

A fairer approach would be for the state to prove that involuntary commitment is necessary, especially for non-violent crimes. This would better balance public safety concerns with the rights of people with disabilities. It also follows the principle that someone is innocent until proven guilty.

Community Alternatives to Jail for People with Disabilities

Many people with disabilities end up in jail or hospitals when what they really need is help in their communities. This is a big problem in Tennessee. Unfortunately, our state has very limited resources to help people with ID who are found incompetent to stand trial. This means that they are often left waiting for long periods of time, without any help.

Long waits in crowded jails are a big problem for people with ID who need help to restore their competency. The state only has one place that can help - the Harold Jordan Center (HJC). Unfortunately, HJC only staffs four to six beds, and they are only able to help about 40% of the people sent there reach competency.

This means people with ID often face long waits in jails that aren’t set up to meet their needs. Jails are not a safe or healthy place for people with ID. The increased risk for people with disabilities to be hurt by others often means they can’t be housed with the general population. To keep them safe, they’re often put in solitary confinement, which causes its own problems.

Research shows that even short periods in solitary confinement can cause long lasting harm for people with disabilities, especially those who also have mental illness. The experience often causes significant distress and trauma.

Getting the Right Help for People with Disabilities

We need to make sure people with intellectual disabilities (ID), including those who also have mental illness, have access to professionals who really understand their needs.

It’s important that the people who evaluate someone with ID for competency to stand trial have deep knowledge about intellectual and developmental disabilities - not just mental illness. This helps ensure a fair and accurate assessment.

We should also look into creating specialized treatment options for people who have both ID and mental illness. This would help make sure they:

• Get the right kind of evaluation.
• Receive services that actually meet their needs.
• Have the supports and accommodations they need to successfully return to their communities.

Continued

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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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