March 29, 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.

ACTION ALERT

The Senate passed the Recognizing the Role of Direct Support Professionals Act (S.1332) earlier this week. The bill would give a standard occupational classification to Direct Support Professionals, an important first step toward getting them the recognition they deserve and improving their salaries and training. Maggie Hassan (D-NH) first introduced this bill in March of 2020, in the 116th Congress.

Now, we need the House to approve the companion bill, H.R.2941, sponsored by Brian Fitzpatrick (R-PA).

Please contact your Representatives in the House and encourage them to

VOTE YES

on

H.R.2941 - The Recognizing the Role of Direct Support Professionals Act.

Click Here to find your Representative

VOR's 2024 Legislative Initiative

MAY 7 - 9, 2024

Registration Is Open!

Our 2024 Legislative Initiative will be held in Washington, D.C.

May 7 - 9

We plan to arrive on the afternoon of Monday, May 6th, and have an informal

get-together that evening. We will meet with congressional staffers from our state representatives on Tuesday, May 7th and Wednesday, May 8th. We also plan on meeting with staff on some of the congressional committees that are discussing the bills that affect our loved ones with I/DD and autism, and some of the federal agencies like DOJ, DOL, CMS, HHS, and ACL to remind them of our issues and our concerns with many of their activities. Additional meetings may be held on May 9 if necessary.

As always, we will provide our participants with contact lists for the congressional staff members for their state's D.C. offices. In the weeks before the initiative, we will hold meetings on Zoom to go over the materials we will be sharing with legislative offices and to help participants prepare for their meetings.

For information about how to register for the conference, please:

CLICK HERE

We ask that all participants in the 2024 Legislative Initiative are

current members of VOR.

Unable to attend this year?

You can still help us to advocate for your family.

Please Click Here To Sponsor the VOR 2024 D.C. Initiative



Intellectual and Developmental Disabilities - An Under-Recognised Driver of Cancer Mortality

Editorial from The Lancet Oncology, Published in the April, 2024 Issue

Greater attention on the disparities in cancer care for individuals with intellectual or developmental disabilities (IDD) is long overdue. A study published in February, 2024, has shown that individuals with IDD are more likely to die from breast, lung, and colorectal cancer than the general population. Although it is known that individuals with IDD have higher overall mortality rates than the general population, the cancer survival findings are stark. After adjusting for confounders, people living with IDD were 2·28 times more likely to die of breast cancer, 2·57 times more likely to die of colorectal cancer, and 1·38 times more likely to die of lung cancer during the study period (2009–17) than those without IDD.

Insufficient data are available to understand all aspects of cancer care in individuals with IDD. A modest body of evidence shows that access to and uptake of cancer screening (eg, breast and cervical cancer screening) for adults with IDD is generally lower than that of the general population. It is difficult to know the impact of inadequate screening rates on cancer outcomes as data on cancer incidence and prevalence in individuals with IDD are patchy, and complicated by the fact that some IDD syndromes are linked with increased cancer risk. Data on cancer treatment and outcomes in this population are also scarce and of low quality. The data do show that adults with IDD experience disparities compared with the general population at all stages of the cancer care continuum. In some cases, care is withheld or modified on the basis of opinion; thus, high-quality research is needed to provide empirical evidence for decision making.

Despite increasing discussion in the oncology community on disparities in cancer control based on various factors, such as sex, age, and ethnicity, there is little clinical evidence to guide practice for individuals with IDD.

Anna Reisman illustrates eloquently in a Perspective piece in NEJM the complexity of the clinical challenge. Despite the best intentions of the doctors involved in her care and the involvement of the family in decision making, breast cancer treatment for Reisman's autistic sister Deborah required a difficult compromise with no data to guide decisions or to anticipate outcomes. Trained supportive care was not available and Deborah's death soon after treatment left the family with unanswered questions. One of Reisman's main points, that care for patients with IDD could learn from paediatric cancer care, is well made. In this setting, young patients are often provided with specialty navigators and treatments are adapted to their unique needs, both physical and mental. Indeed, there are lessons to be learned also from geriatric care, care of migrant or refugee populations, and from pregnant patients too—all vulnerable patient populations who might require adjustments to their cancer care. However, clinical knowledge can only go so far, and the art of medicine must play a considerable part in redressing inequities in outcomes in these difficult circumstances.

It is unacceptable that patients with cancer and IDD have lower access to screening, face barriers to treatment, and have lower cancer survival, and it is remarkable that so few steps have been taken to understand the underlying causes of inequity and improve access and outcomes. Greater awareness of the unique needs of patients with cancer and IDD among health-care providers, more opportunities for specialised education, and above all patient-focused and individualised care could go a long way towards bridging the gaps. In the longer term, implementation research to develop practical guidance that is nationally standardised and culturally appropriate is required.

Read the full article here

When Everything is Eugenics, Nothing Is

By Amy S.F. Lutz, Persuasion, March 22, 2024

Papers published in academic journals rarely capture public attention, but last year a study from Social Science and Medicine – Qualitative Research in Health was picked up by a variety of mass media outlets. The paper focused on whether testosterone therapy should be discontinued in transgender men during pregnancy, but that wasn’t the reason for the coverage. What got everyone’s attention was rather the authors’ shocking dismissal of the increased risk of metabolic, urogenital, and neurodevelopmental conditions in babies exposed to testosterone. One of the reasons given was: “The desire to maximize the ‘fitness’ of offspring, and guard against development of conditions or human characteristics considered ‘unhealthy’ or less than ideal, may reflect troubling eugenicist and biomedical moralist underpinnings in ways that further harm already socially-marginalized people.”

The belief that disability is not inherently bad isn’t new. Social models that locate disability in the mismatch between people and their environments, not in individual bodies, have long been endorsed by some disability studies scholars—most recently by Elizabeth Barnes in her “value-neutral” model, in which she defines disability as “mere-difference.” But this has never been a consensus position. As feminist philosopher Susan Wendell pointed out almost thirty years ago, there is “much suffering and limitation” that social justice and cultural change cannot fix.

So I was surprised when, six months after the paper was published, the very mainstream National Institutes of Health (NIH) announced that they were considering removing the goal of reducing disability from its mission statement at the recommendation of an advisory committee that blasted the idea that disabled people need to be “fixed” as “ableist.” It was a surreal conversation to follow as the mother of a profoundly autistic son, Jonah, 25. We don’t talk about “cure” very much anymore, given that scientists seem no closer to identifying one than they were when Jonah was diagnosed more than two decades ago, but as a thought experiment? Not only would I cure him if it were possible, but if I could eradicate profound autism in future generations, I would without hesitation. Now, considering the tenor of these online debates, I was forced to consider: did that make me a eugenicist?

Jonah is full of love and energy. When he’s feeling particularly affectionate, he will come over and press his cheek against mine, or drape his six-foot frame against me so I stagger under his weight. On those days, when Jonah is calm and happy, when he asks to “walk with Mommy” or “draw with Mommy” (he doesn’t do pronouns), sometimes I think: yes, I could do this forever.

Someone will have to. Jonah requires round-the-clock care. Without prompting, he would never brush his teeth, shower, put on a coat, or take the medicine that controls his seizures and minimizes the aggressive behavior that necessitated an almost year-long hospitalization when he was only 9 years old. He has no safety awareness, so our house has code locks on all the exterior doors to prevent wandering—a dangerous behavior exhibited by more than half of autistic children, and one of the leading causes of premature death in this population.

Recently, Jonah brushed by the stove, accidentally turning on one of the gas burners. To say he didn’t notice is to obscure much more fundamental deficits. He doesn’t understand what fire is—how it starts, how it spreads. He wouldn’t yell for help, grab a fire extinguisher, or even know to leave the kitchen before being trapped. We are all—my husband and four other children—so conditioned to stay alert that it’s not even a conscious act: within seconds, my younger son jumped up to turn the burner off.

In his recent memoir Troubled, Rob Henderson articulates the concept of luxury beliefs: “ideas and opinions that confer status on the upper class at little cost, while often inflicting costs on the lower classes.” He focuses on socioeconomic status, but I can’t help thinking that perhaps the greatest luxury belief of all is that disability is neutral. It sounds progressive and empowering—yet betrays complete ignorance of what severe intellectual and developmental disability looks like, or how it impacts affected individuals and their families. Perhaps ignorance is the wrong word. More accurately, some disability advocates aggressively shut down incongruent narratives with accusations of “eugenics” and “ableism,” to the point that even the NIH would rather abandon its founding mission than challenge this stunningly obvious fiction.

Because disability is not neutral in our house. Jonah will never have a meaningful career or a romantic relationship. He will never understand politics, geography, history, or philosophy. He can’t follow the plot of Star Wars or even Paw Patrol, choosing instead the Sesame Street music compilations we had on VHS when he was a toddler, which kind souls have since uploaded to YouTube. There’s nothing wrong with Sesame Street—we quote it so often, even when Jonah isn’t around (“I told you, it wouldn’t be easy”; “I guess not every crazy idea works”; “I might even say it’s Oscar-worthy!”) that I think of it as our family’s love language. But no one would choose this extraordinarily constrained life—not for themselves, or for their children.

Does that make me a eugenicist? Impossible to answer. If promoting the health of fetuses with the goal of preventing disability counts as eugenics, then anyone who has ever taken a prenatal vitamin, or avoided alcohol or sushi during pregnancy is a eugenicist.

Continued

What’s the Difference Between Autism and Asperger's Disorder?

By Andrew Cashin, The Conversation - ABC News Australia, March 23, 2024

Swedish climate activist Greta Thunberg describes herself as having Asperger's while others on the autism spectrum, such as Australian comedian Hannah Gatsby, describe themselves as "autistic". But what's the difference?

Today, the previous diagnoses of "Asperger's disorder" and "autistic disorder" both fall within the diagnosis of autism spectrum disorder, or ASD.

Autism describes a "neurotype" — a person's thinking and information-processing style. Autism is one of the forms of diversity in human thinking, which comes with strengths and challenges.

When these challenges become overwhelming and impact how a person learns, plays, works or socialises, a diagnosis of autism spectrum disorder is made.

Where do the definitions come from?

The Diagnostic and Statistical Manual of Mental Disorders (DSM) outlines the criteria clinicians use to diagnose mental illnesses and behavioural disorders.

Between 1994 and 2013, autistic disorder and Asperger's disorder were the two primary diagnoses related to autism in the fourth edition of the manual, the DSM-4.

In 2013, the DSM-5 collapsed both diagnoses into one autism spectrum disorder.

How did we used to think about autism?

The two thinkers behind the DSM-4 diagnostic categories were Baltimore psychiatrist Leo Kanner and Viennese paediatrician Hans Asperger. They described the challenges faced by people who were later diagnosed with autistic disorder and Asperger's disorder.

Kanner and Asperger observed patterns of behaviour that differed to typical thinkers in the domains of communication, social interaction and flexibility of behaviour and thinking. The variance was associated with challenges in adaptation and distress.

Between the 1940s and 1994, the majority of those diagnosed with autism also had an intellectual disability. Clinicians became focused on the accompanying intellectual disability as a necessary part of autism.

The introduction of Asperger's disorder shifted this focus and acknowledged the diversity in autism. In the DSM-4 it superficially looked like autistic disorder and Asperger's disorder were different things, with the Asperger's criteria stating there could be no intellectual disability or delay in the development of speech.

Today, as a legacy of the recognition of the autism itself, the majority of people diagnosed with autism spectrum disorder — the new term from the DSM-5 — don't a have an accompanying intellectual disability.

What changed with 'autism spectrum disorder'?

The move to autism spectrum disorder brought the previously diagnosed autistic disorder and Asperger's disorder under the one new diagnostic umbrella term.

It made clear that other diagnostic groups — such as intellectual disability — can co-exist with autism, but are separate things.

The other major change was acknowledging communication and social skills are intimately linked and not separable. Rather than separating "impaired communication" and "impaired social skills", the diagnostic criteria changed to "impaired social communication".

Why do some people prefer the old terminology?

Some people feel the clinical label of Asperger's allowed a much more refined understanding of autism. This included recognising the achievements and great societal contributions of people with known or presumed autism.

Continued

Note: VOR joins with several of its peer organizations, including the National Council for Severe Autism and the Profound Autism Alliance, in supporting a separate classification in the next revision of the DSM -5 for severe or profound autism. We also support the view that the Autism Cares Act should be revised to include acknowledgement of people with profound autism as a recognized cohort in the spectrum.

Is Medicaid Too Big to… Block Grant?

By Drew Altman, KFF, March 26, 2024

Medicaid is our largest public health insurance program covering about 85 million Americans. It is also the single largest source of federal funding for states. His comment conjured up images of a return to the wars over a Medicaid block grant or a variation on it called a per capita cap. Both give states greater flexibility over eligibility and benefits in Medicaid in return for big cuts over time in federal Medicaid spending. It’s an idea that first surfaced with Ronald Reagan and has reappeared several times since. Now it’s one of the proposals included in plans put together by the Republican Study Committee in the House, and it’s likely to resurface if Trump and the Republicans emerge with control of the government in November. It’s such a significant policy change affecting so many people and every state that it’s worth revisiting the essentials of the idea as well as its politics and prospects.

There have been numerous block grant and per capita cap proposals over the years. Some would give states a fixed amount or “block grant” for all of the Medicaid program and some for parts of it. Some would cap the amount of federal funding states get on a per person basis, allowing funding to grow with enrollment. More recent plans combined the idea with Affordable Care Act (ACA) repeal. For example, the Graham-Cassidy proposal, which emerged in the 2017 ACA repeal debate, combined a block grant for ACA subsidies and ACA Medicaid expansion with a cap in the traditional Medicaid program. All would set funding levels well below what the federal government is expected to spend under the current program to produce significant federal budget savings. Most would phase in the changes to cushion the impact. All would give states substantially greater flexibility to operate their programs.

How big would the cuts be? They can be any size but as an example, the Congressional Budget Office (CBO) projected that one of the Medicaid block grant plans put forward as part of the Republican Repeal and Replace debate in 2017 would have reduced federal Medicaid funding by more than 25% over 10 years and 30% over 20 years. Medicaid is already a low-end payer for many services in many states, and less money for states can only mean three things: Covering fewer people, cutting benefits, and the time-honored favorite, lowering payment rates for providers. There is no magic delivery reform that is an alternative to these outcomes. Of course, states could also reduce spending on other budget lines items to keep Medicaid whole, such as education and corrections, or raise taxes, although these are hardly palatable options. They could also shrink their Medicaid programs, leaving more people reliant on safety net hospitals and clinics and without insurance.

Governors generally like the broad idea of greater state flexibility to run their programs, feeling that their federal “partners” constrain them more often than they help them. That’s why both blue and red states seek waivers under Medicaid, albeit generally to pursue very different policy directions. Even I admit to those sentiments as a former state human services commissioner responsible for Medicaid. Where most get off the train is when they learn that the flexibility comes with big reductions in federal funding that will make them the bad guy when they pass those cuts on in some form. Even if cuts are deferred until after they are out of office, they often also see themselves as stewards of their states and know that state funding will not be there to make up the difference in an economic downturn when states count on Medicaid to play its counter-cyclical role, as it is designed to do. Indeed, in the past, the federal government has increased matching rates during economic emergencies to help bail states out, most recently during Covid. There would be no matching rate to dial up in an economic emergency with a block grant. The most conservative governors who share a zeal for cutting back public programs and public coverage will hang in and support the idea, but most governors likely will not.

Many providers will also oppose a Medicaid block grant coupled with cutbacks in federal funding, especially urban and rural and children’s hospitals and nursing homes, a powerful lobby in many states. These providers complain about Medicaid rates but rely on its revenues. For these reasons, opposition has grown as budget impacts become clearer. Opposition from Democrats has been fierce. For Democrats, preserving the entitlement nature of Medicaid and the coverage that comes with it is non-negotiable, and it’s almost unthinkable to them to reverse course after decades of building on Medicaid to broaden coverage and reduce the number of uninsured.

Another challenge is the popularity of the program. Republicans target Medicaid because they see it as an unpopular welfare program, perhaps remembering a bygone time when the program mostly covered women and children on the old AFDC program. When Reagan first backed a Medicaid block grant, the program covered fewer than 20 million people. Today’s Medicaid program bears little resemblance to that early program. Medicaid now has a considerably wider reach than Medicare, and as Medicaid has expanded, it has become part of the fabric of American life and vastly more popular with the general public and voters. While not quite sacrosanct like Social Security and Medicare are, it is not far behind and for some time now, the public has been almost as resistant to cutting Medicaid to reduce the deficit as it is to cutting Social Security or Medicare The program’s reach into American society is now deep and wide. For instance, KFF has found that:

1. Two-thirds of adults in the U.S. say they have had some connection to the Medicaid program, including health insurance (59%), pregnancy-related care, home health care, or nursing home care (31%), coverage for a child (31%) or to help pay for Medicare premiums (23%).
2. Three-fourths of the public say they have an either “very favorable” (29%) or “somewhat favorable” (47%) view of the program, while one-fifth say they have an unfavorable view. A majority of Democrats (89%), independents (75%) and Republicans (65%) view the program favorably.
3. Two-thirds of the people living in states that have not expanded their Medicaid programs under the Affordable Care Act to cover more low-income adults say they want to see their Medicaid programs expand.

Read the full editorial here

CALIFORNIA

Winners and Losers’ as $20 Fast-Food Wage Nears in California

The nation’s highest state minimum wage for fast-food workers takes effect on Monday.

Read the article here

As of Mar 20, 2024, the Average Hourly Pay for a DSP in California is $16.86 An Hour.

Link to sources

Source: ZipRecruiter - Link Here

Washington - ‘Really troubling:’ Survey Finds Poor Outcomes for Students with Disabilities after High School

By Grace Deng, Daily Record, March 26, 2024

About a quarter of Washington’s students with disabilities don’t find employment or enroll in higher education within a year of leaving high school.

Outcomes are even worse for students with autism or intellectual disabilities: 54% of graduates with intellectual disabilities are not engaging in employment or higher education within a year, and 41% of those with autism fall into the same category.

The data comes from a new survey from the state Office of the Superintendent of Public Instruction, which analyzes information collected in 2022 from students receiving special education services who left high school in the 2020-2021 school year.

Joshua Taylor, a professor at Washington State University who studies transitions from school to employment for students with intellectual and developmental disabilities, said the reported outcomes for those students are “really troubling.”

“These rates of trying to improve employment outcomes for people with disabilities — and particularly for people with intellectual and developmental disabilities — have been stuck for 30 years or so,” Taylor said. “We just haven’t seen a lot of positive change.”

That’s reflected in the report: In the past five years, the lowest rate of “no engagement” in higher education or employment was 25% for students who left during the 2017-2018 school year. The highest rate of “no engagement” was 30% for students who left in the 2019-2020 school year, which may also reflect the effects of COVID-19, Taylor said.

Washington students with intellectual disabilities also have lower rates of competitive employment, defined as a part-time or full-time job with similar wages as non-disabled workers.

At around 12% for students with intellectual disabilities and 15% for students with autism, rates of competitive employment in Washington are even lower than the national average, Taylor said — although he cautioned that it’s difficult to compare state and national datasets due to how the information is collected. One report found rates of competitive employment for students with intellectual and developmental disabilities nationwide was 20% in 2014.

The report also includes rates of “other employment,” which includes employment of disabled workers at salaries below minimum wage. That’s still legal in 37 states, including Washington, according to a December 2023 report from the National Partnership for Women and Families. Congressional lawmakers re-introduced legislation to end that practice in February.

Taylor said there’s a lot being done on both the federal and state levels to improve rates of employment and education among youth with disabilities transitioning to adulthood.

It’s been 10 years since the Workforce Innovation and Opportunity Act of 2014 was implemented, which requires state vocational rehabilitation agencies — which provide employment services to people with disabilities — to use at least 15% of their federal funds on making sure students with disabilities have access to services that help them find employment after school.

Continued

Washington - Care Providers for Developmentally Disabled People Come Up Short Pushing for More Pay

By Laurel Demkovich, Daily Record, March 23, 2024

Washington has a shortage of workers who care for those with intellectual and developmental disabilities.

People with developmental disabilities can sometimes require intensive 24/7 care, and those who do this work, known as direct support professionals, often earn low pay making them difficult to recruit and retain.

Providers of this type of care came to legislators this year to ask for a 10% rate increase — a figure based on a state-funded survey.

The Legislature only set aside enough money for a 2.5% increase, which will likely result in a 50-cent per-hour bump in care professionals’ pay.

“It doesn’t come close to the amount that we need just to be whole,” said Randy Hauck, executive director for Community Living.

In a 60-day session, lawmakers adjust the budget but don’t write an entirely new spending plan. This can make it difficult to include large pots of new money. Hauck said he heard from lawmakers this was the biggest factor that limited the size of the pay hike.

Direct support professionals work for providers, like Community Living, which receive funding from the state to offer 24-hour care for clients with disabilities in a supported living setting. This type of housing is often home to a handful of people and allows them to be a part of their community, which advocates say helps people with disabilities thrive.

A 2022 rate study commissioned by the Department of Social and Health Services, which was released to the public in February, found that the professional care role is “physically and mentally demanding as compared to other industries with similar wages.”

The study’s top recommendation was for a 10% rate increase, equivalent to around $81 million a year, to get these providers up to a living wage.

Other recommendations from the study included partnering with training institutions to support workforce development and creating a new payment plan for workers who voluntarily serve people with complex behaviors and complete additional training.

Scott Livengood, at Alpha Supported Living Services, estimates that these professionals are currently paid 20% below what’s considered a living wage in Washington. He said after taking into account inflation since the 2022 study, supported living services need more like a 16% rate increase.“Honestly this year’s increase is just kicking the can down the road,” Livengood said.

With such low wages and benefits, advocates estimate that half of their staff leave the job every year. The 2022 study found that there was a 43% turnover rate among all levels of staff in supported living services — a problem only made worse by the COVID-19 pandemic.

With such high turnover and so many open positions, Hauck said the state has a 400-person waitlist for services, a direct result of providers not being able to stay fully staffed.

Turnover can affect the people who access services, too. People with developmental disabilities often benefit from consistent people in their lives. When their caregivers are constantly changing, it can be really difficult, Hauck said.

Continued

Texas - Making Life-or-Death Decisions for $10.60 an Hour: TX Group Homes Suffer from Staffing Crisis

Thousands of Texans with intellectual disabilities live in group homes. The group home system is struggling to retain workers under the low base wage the state legislature set last year.

By Miranda Suarez, KERA Houston Public Media, March 27, 2024,

Cassie Weddel can't express herself through words, but she can express herself through her surprisingly strong grip. She's always reaching for her mom's hand as they sit in the family living room in North Richland Hills.

"Cassie loves to grab and hug," her mom, Lea Ann Capel, laughed. "Sometimes to the point where she'll pull you over."

Almost 38 years old, Cassie needs round-the-clock care, Capel said. Her physical and intellectual disabilities mean she can't walk, brush her teeth or bathe herself, and doctors estimate she's at the cognitive level of a toddler.

In a family where everyone works, that type of care is impossible to provide at home without support. That's why, in 2008, Cassie moved into a group home 10 minutes away from her mom's house.

Group homes are normal houses where people with intellectual disabilities can live, supported by staff called direct care workers. They do just about everything: cook, clean, give out medication, and make sure residents are happy and healthy.

For years, the group home was great for Cassie, Capel said.

“Until recently," she said. "And that’s when things started to become concerning."

Capel said during the pandemic, she saw the staff at her daughter's group home dwindle, reflecting a crisis across the state and country. Group homes in Texas can’t hire enough workers, forcing closures and making it harder for the remaining homes to provide quality care.

Advocates, group home operators and workers blame the low pay. Group homes are funded through Medicaid, and the Texas state legislature sets the base wage for workers. Right now, it's $10.60 an hour. That's after lawmakers increased the wage from $8.11 an hour during the legislative session last year.

Assuming a 40-hour work week, direct care workers who make life-or-death decisions for people with disabilities can expect to make $22,000 a year.

“This is a full, total, body-mind disability that requires someone to care for them constantly," Capel said of her daughter. "You can’t expect someone to be able to do that working $10.60 an hour, especially in this economy.”

More than 15,000 Texans with intellectual and developmental disabilities, or IDD, rely on group homes, according to a coalition of three organizations that represent group home providers.

How does group home funding work?

The Texas Legislature is responsible for group home workers' wages because funding for group homes comes from Medicaid, the joint state and federal health program.

The government contracts with public entities or businesses that run group homes and reimburses them for their operating costs, including wages. Group homes rely on Medicaid for everything, so operators can't really bump up wages unless the legislature boosts the Medicaid reimbursement rates, according to Susan Garnett, CEO of My Health My Resources of Tarrant County.

The coalition surveyed its members in 2023 and found the staffing crisis — which was bad long before the pandemic — "has reached the brink of a catastrophe."

Out of the 148 providers who responded to the survey, two-thirds reported they "struggle to deliver quality care due to insufficient staffing." Staff vacancy rates hover around 30%, an "untenable" level. One in three homes do not have scheduled staff at a given time.

Read the full article here

Texas - Notice of Public Hearing on the Proposed Interim Reimbursement Rates for Small and Large State-Operated Intermediate Care Facilities for Individuals with an Intellectual Disability (ICF/IIDs) for Fiscal Year 2024

April 29, 2024 - 9:00 am

HHSC North Austin Complex Building, Public Hearing Room 1.401

4601 W. Guadalupe Street. Austin, Texas

78751

Webcasting Available

For more information, please click here

Massachusetts - FDA Proposes Ban on Electrical Stimulation Devices at Canton Center for People with Disabilities 

By Kerry Kavanaugh and Maria Papadopoulos, Boston 25 News, March 25 2024

 In a step rarely taken by the agency, the Federal Drug Administration is proposing a ban on electrical stimulation devices used for self-injurious or aggressive behavior, which are used at a Canton center for people with disabilities.

The devices, known as EDSs, are “intended to reduce or stop self-injurious or aggressive behavior,” the FDA said in a statement on Monday. They are only used at the Judge Rotenberg Education Center in Canton, a day and residential school for people with severe autism and other developmental disabilities.

The FDA estimates around 50 people at the Canton home currently have a treatment plan that includes the use, or potential use, of an ESD.

“The agency has determined that these devices present an unreasonable and substantial risk of illness or injury,” the FDA said in its statement, noting that this is the second time the FDA has proposed a ban of these particular devices.

ESDs deliver electrical shocks through electrodes attached to an individual’s skin to attempt to reduce or stop harmful behaviors.

“This proposed rule proposes to ban ESDs intended for self-injurious and aggressive behaviors,” the FDA said. “Notably, some people who exhibit self-injurious or aggressive behavior have intellectual or developmental disabilities that make it difficult for them to communicate or make their own treatment decisions.”

The devices have a number of psychological risks, including depression, anxiety, worsening of underlying symptoms, development of post-traumatic stress disorder, and physical risks such as pain, burns, and tissue damage, the FDA said.

In a statement, the Judge Rotenberg Education Center called ESD treatments “life-saving.”

“The Judge Rotenberg Educational Center (JRC) will continue to advocate for and, if necessary, litigate to preserve the court-approved, life-saving ESD treatment,” the center said in its statement. “FDA has once again made a decision to move forward with a ban of this treatment based on politics, not facts The D.C. Circuit Court of Appeals vacated a similar 2020 FDA rule banning the use of our treatment and we are confident that we will once again prevail on behalf of our clients and their families.”

“JRC has provided countless hours of testimony, volumes of information and made clinicians, other staff and family members of our clients, or clients themselves, available to the FDA over the past 13 years,” the center said in its statement. “The FDA previously attempted to ban ESDs without giving a fair hearing to JRC or the parents. Fortunately, JRC successfully appealed the ban to the United States Court of Appeals for the D.C. Circuit, where the Court found that the FDA was illegally engaging in the practice of medicine. Judge Rotenberg Educ. Ctr., Inc. v. United States Food & Drug Admin., 3 F.4th 390, 393 (D.C. Cir. 2021).”

“In moving toward a ban, the FDA is citing risk of injury and PTSD, however, after 44 days of testimony, a 2018 Massachusetts court decision found that: there was no evidence as to any psychological side effects experienced by JRC students receiving electric skin shock aversive treatment,” the center said in its statement. “The Court also found that the GED devices effectively treat the severe problem behaviors of JRC clients, and that there is no evidence of physical or psychological side effects from ESD treatment when used according to JRC’s policies and protocols.”

“In 2023, The Massachusetts Supreme Judicial Court affirmed the trial court’s findings that the ESD treatment is safe and for some patients the only effective treatment for their life-threatening self-abuse and aggression,” the center said. “JRC has exceeded all reporting requirements, and the school opted many years ago to install a 24 hour per day video monitoring system - offering unprecedented oversight of the students and staff.”

Meanwhile, in a statement, the Autism Self Advocacy Network praised the FDA’s proposed ban of the devices.

Continued

New York - ‘Unprecedented’ Provider-Union Blitz Fights Medicaid Cuts   

By James M. Berklan, McKnights Long-Term Care News, March 25, 2024

Long-term care providers took their campaign against $1 billion in proposed Medicaid cuts to new heights Friday, teaming with sympathetic community groups, lawmakers and even unions to protest at seven New York locations.

Thousands of workers took part, many transported to afternoon rally sites right after their shifts ended.

“What’s unprecedented about it is we’re in alignment with the employers, like nursing homes, the community organizations and other healthcare unions,” Todd Hobler, executive vice president for 1199/SEIU Western/Upstate New York, told McKnight’s. “That is something we haven’t seen at this level in a long time.”

Rallies and media events were held in New York City and most of the state’s major population centers. 

The multi-site action comes after providers and others held walkouts and kettle-banging demonstrations in April 2023, resulting in slight pay increases. But this time the stakes are higher since Gov. Kathy Hochul’s (D) proposal would drain a fund that currently pays only about 70% of care costs, opponents noted. 

“All sides appreciate that nursing homes in New York state are generally under-resourced,” Hobler said. “That creates problems in terms of being able to have a competitive wage and benefits. It hurts staffing and filling vacancies so we have a common interest in addressing those problems.”

Providers and their union counterparts last fall “uniquely” created a singular funding proposal so that lawmakers couldn’t be confused by competing efforts, Hobler explained. 

Continued

Missouri - Heartland Care Center Still Making Changes Before it can Reopen

By Jackson Saylor, KTVO, March 26, 2024

After being forced to close back in December of 2021 due to staffing shortages brought on by COVID-19 vaccine mandates, the quest to reopen the Scotland County Care Center continues.

Back in the fall of 2023, Scotland County Care Center Board began that very quest, and in November, Vice Chair Tara Schulz told KTVO they were still waiting to speak to the Missouri Department of Health and Senior Services, and trying to receive a Letter of Intent and Certificate of Need.

When KTVO spoke with Schulz earlier this month, she said that after meeting with the DHSS on March 6th, the board is still trying to obtain that Certificate of Need and are still being held up with several changes that need to be made.

The three main fixes that the DHSS would require are a new emergency fire door, an alternative bathroom style as their Jack-and-Jill style bathrooms are no longer acceptable, and a new kitchen for the care center.

Shulz told KTVO that those last two requirements are particularly challenging.

For the bathrooms it's a lengthy process that would cause the facility to keep their doors closed longer.

Shulz told KTVO they're still trying to figure out a way around that, which could include keeping the bathroom the way it is and giving the resident two rooms, which would limit the number of residents the care center can take.

As for the kitchen, the care center, which is attached to Scotland County Hospital, has shared the kitchen with the hospital in the past, but the DHSS requires the care center to have their own.

The kitchen is currently leased to the hospital, but the hospital and the care center have shared the kitchen since 1970, and the care center board was hoping to just use the kitchen to supply meals to residents.

The board is planning to split the care center into three different facilities, a residential care facility, an intermediate care facility, and a skilled nursing facility.

Read the full article here

GOP Lawmakers Tie Care for Disabled Kansans to their Opposition of Medicaid Expansion

By Rachel Mipro, Kansas Reflector, March 22, 2024 

Several Republican lawmakers have sworn against expanding state health care coverage, arguing that they are “laser-focused” on fixing long wait times for thousands of the state’s disabled residents in need of health care first. 

The same lawmakers now say they will not fund more than a small fraction of state-funded waivers for disabilities services each year — an amount that represents the most amount of funding the waitlists have gotten in years, but a figure that won’t keep the lists from growing, let alone providing more Kansans relief. 

“Our work is not done,” said House Speaker Dan Hawkins, a Wichita Republican, in an announcement of funding. “We’ll continue to work as quickly and aggressively as possible until the waitlist is eliminated and the intellectual and developmental disability community is equipped with these critical services.” 

The Kansas House of Representatives approved funding for the Republican-led plan to fund new 500 slots for the intellectually/developmentally disabled waitlist and physical disability waitlists through a $34.6 million allocation in the state budget.

If enrollment trends continue along the same lines as last year, when 561 new people enrolled in the intellectual disability wait list, the allocation wouldn’t be enough to stop the lists from growing. The Kansas Council on Developmental Disabilities’ recommendation is to reduce the waitlists by 20% in fiscal year 2025 by funding 1,100 slots on the I/DD waiver and 500 slots on the PD waiver.

The wait list for intellectual and developmental disabilities services is at 5,279 people, according to the most recently available data. The physical disability wait list is around 2,382 Kansans. Wait times can last more than 10 years, and more and more Kansans have been added to the slow-moving lists, living for years without crucial care. 

During a Wednesday House budget debate, House Minority Leader Vic Miller, a Topeka Democrat, recommended allocating more money from the state’s rainy day fund to pay for an additional 500 slots, bringing the state budget more in line with advocates’ recommendations. 

“If this situation does not represent a rainy day, I don’t know what would,” Miller said. “We collectively have done more this year than we have done recently. And for that, whoever has had a hand in that deserves some credit…All I’m saying is it’s still not enough.”

His attempt failed, with several lawmakers arguing that funding more slots wouldn’t work because the state doesn’t have enough service providers. Disability rights advocates refute these claims. 

Rocky Nichols, executive director of the Disability Rights Center of Kansas, said the state providers could handle enrolling 1,000 people into services. Nichols also pointed out that more funding would attract more providers into the state. He turned to 2014, when state providers enrolled 1,744 people all at once into services. Nichols said the state has since implemented higher provider rates, leaving the state’s provider network in a much better place.

“We should challenge ourselves,” Nichols said. “We should not take the easy way out. We must challenge ourselves because people are suffering out there. It’s all very doable.”

Rep. Brenda Landwehr, a Wichita Republican, and chairwoman of a House committee that recently shot down a Medicaid expansion bill, said the state needed to fix its broken health care system before expanding services.

Rep. Will Carpenter, an El Dorado Republican and chairman of one of the most influential legislative committees, spoke against Medicaid expansion Wednesday during Landwehr’s committee on the grounds that disabled Kansans, along with other state residents, need to be helped before the state rolls out insurance for “able-bodied adults.”

In an interview with the Reflector afterward, Carpenter said the state needed to build up its provider network before working to take more people off of the lists. 

“The last thing I want to do is have people eligible out there that cannot receive the services that they need,” Carpenter said. “That would be just jerking the rug right out from underneath their feet if we increased it beyond what our providers could take care of. …I want to get these folks taken care of, that’s our job. Medicaid expansion is a totally separate issue. We need to take care of these folks before we take on anyone else.” 

Continued

California - Adults with Autism Faced ‘Torture’ at this L.A. Group Home. Their Moms Want Justice

By Rebecca Ellis, The LA Times, March 26, 2024

The two caregivers edged toward the staff bathroom as the sounds of slaps and screams ricocheted across the ranch-style home.

The evening of Aug. 25, 2023, had already been an exceptionally trying one for staff at Elwyn-Mayall, a four-person home in Northridge for adults with developmental disabilities. Jude Cabanete, one of the home’s residents with autism, had spread feces across his mattress and vomited on the floor, according to staff reports from that night. The caregivers had hosed down the sheets. Cabanete seemed to want to get clean, too.

“Shower, shower,” said Cabanete, 31.

Adekunle Fabunmi, who was assigned to watch him that evening, told him no, a co-worker would later tell an internal investigator. Cabanete ran for the staff bathroom, where he emptied a container of disinfectant wipes and began to chug water out of it, according to an incident report reviewed by The Times. Fabunmi followed.

By the time two other caregivers got to the bathroom, Fabunmi was striking Cabanete in the head — a scene captured on cellphone video taken by one of the caregivers. The 13-second video viewed by The Times captures four slaps to the face and one punch to his left ear. One more slap can be heard off-camera.

“No,” Cabanete groaned after each hit, cowering by the bathroom window with his arms pinned to his side. “No. No. No.”

Fabunmi, a 53-year-old employee known as “Pastor,” would continue to torment Cabanete throughout the home, additional footage showed. In the living room, he threw Cabanete, naked from the waist down, from the couch onto the ground as he screamed. In the room next door, he ordered Cabanete, still wearing only a bright red T-shirt, to do 400 jumping jacks as he cried out to stop.

The videos do not show either of his colleagues intervening.

Fabunmi declined to discuss the case in a brief phone call and referred a reporter to his attorney. Christian Oronsaye, the attorney who represented him in a state investigation into the incident, provided The Times a letter he’d sent to the state saying he believed the accusations of abuse at the Northridge facility were false after interviewing Fabunmi, but declined further comment.

*

As California looks to move people with developmental disabilities from institution-style facilities and into smaller, more intimate homes, Elwyn has become a lifeline for the state, where officials say such homes are in critically short supply.

The 170-year-old nonprofit, which describes itself as a “premier, internationally recognized” provider for people with developmental disabilities, operates nearly 50 licensed homes in California for adults who can’t live alone. That’s more than nearly any other organization, state data show.

The violence captured on video at the Northridge home has raised questions about Elwyn’s prominent role as caregiver for some of the most vulnerable Californians — and whether oversight bodies are prepared to keep troubled homes in check amid a severe shortage in beds.

Continued

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

VOR SUPPORTS:

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:

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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