November 24, 2023

VOR's Weekly News Update

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run by families of people with I/DD and autism

for families of people with I/DD and autism.

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This Week's News:

A Rift over ‘Profound Autism’ Reveals a Community’s Deeper Divide

By Katherine Ellison, The Washington Post, November 18, 2023

Public perceptions of autism have come far in the 80 years since Austrian American scientist Leo Kanner first described a neurodevelopmental childhood disorder causing “an innate inability to form the usual, biologically provided contact with people.”

Against a backdrop of a burgeoning neurodiversity movement portraying wide variations in human behavior as differences, not deficits, many autistic adults have come to see their traits as a gift and source of pride.

Yet parents such as Maria Leary, the mother of two autistic, nonverbal sons — one of whom frequently injured himself and others before his death in 2018 — fear the neurodiversity revolution is leaving her family behind.

“You see happy videos of the great accomplishments of people with autism who get to go to work and play in basketball games,” says Leary, who is also a New Jersey disability consultant. “And, of course, that’s what I want for my kids. But that’s not my reality.”

Leary is on one side of a debate that probably will heat up in coming months as advocates seek different outcomes from Congress’s review of the Autism Collaboration, Accountability, Research, Education and Support (Autism Cares) Act of 2019.

At the heart of the divide is a deceptively simple phrase: “profound autism.”

Parents such as Leary believe recognizing some people as having profound autism would help target more research and support for children like theirs who are nonverbal, intellectually disabled and in need of constant supervision. In a paper in the journal Public Health Reports this year, researchers estimated that nearly 27 percent of 20,000 autistic 8-year-olds whose records they analyzed could be categorized as having profound autism.

Leaders of the Autistic Self Advocacy Network (ASAN), however, reject the phrase, calling it dangerous and misleading.

“We are concerned about the human and legal rights of the people who would be so labeled,” ASAN Executive Director Julia Bascom said in an email. Devoting funds to “profound autism,” she wrote, “would result in research aiming to ‘prevent’ or ‘cure’ autism, and a focus on more restrictive services.”

The Centers for Disease Control and Prevention estimates that 1 in 36 U.S. children (roughly 2 million) and some 5.4 million adults have autism spectrum disorder. While the causes aren’t well understood, some scientists believe it runs in families. No link has been found between autism and vaccines.

Until 2013, clinicians diagnosed people with any one of four distinct categories of autism, including Asperger’s syndrome, called high-functioning autism by some, and childhood disintegrative disorder, a rarer and more debilitating condition. But following a major revision that year in the Diagnostic and Statistical Manual of Mental Disorders, a key clinical guidebook, these separate diagnoses were consolidated as “autism spectrum disorder.”

As co-founder and president of the Autism Science Foundation, former network TV executive Alison Singer is a leader in the effort to distinguish these points on the spectrum.

Singer says there’s an urgent need for more specialized care for people like her daughter, Jodie, 26, who has been diagnosed with autism. Her mother says she also is intellectually disabled, minimally verbal, and often pulls her hair, bangs her head and lashes out at others.

An often blunt speaker, Singer has become a leading lightning rod in the emotional debate, in which she says she has been threatened and denounced as an “ableist” and worse. It hasn’t deterred her activism.

“Autism can be an identity or way of being for some, but for others, it’s a debilitating medical condition,” she says.

Parents including Leary and Singer insist that, while they respect the achievements of autistic adults able to advocate for themselves, they need to speak on behalf of children unable to do so.

Read the full article here

Read a response to this article below:

The Good Life: Access Denied

By Jacquelyne Kancir, TN Chapter of the NCSA, November 18, 2023

My mother was a truly remarkable advocate for both me and my brother, but the world was different in the 80s. Despite my mother’s exhaustive attempts to find the most appropriate medical and educational supports for my brother, he spent years of his childhood misdiagnosed. Thus, every pill he swallowed, every therapy session he attended, and at every desk he sat up until “PDD-NOS” entered my young vernacular was simply inappropriate at best and sometimes even harmful.

Once properly diagnosed, my brother went on to thrive through his teen years. My mother found him a school that focused on his strengths, helped build his confidence, and showed him that he was valued in this world. He even started his own small engine repair business while still in high school, and he got a job at the airport after graduating.

In our early adulthood, he still needed an intermediate amount of support. Up until my mid-30s, he would sometimes live with me and sometimes live with my mother. We didn’t have an option in Pennsylvania then like Tennessee has today with ECF Choices. When my brother graduated high school, he fell off a cliff of services. He didn’t qualify for HCBS waivers, and he didn’t have access to job coaches, enabling technology, or other supports that, in hindsight, I feel would have prevented many of the challenges he faced on his quest for full independence.

Nevertheless, he persisted, and for the past seven years, he’s lived independently successfully. He drives, cooks his own meals, does his own shopping, pays his bills, cleans his house, has his own friends, enjoys multiple hobbies, and so much more.

I vividly remember pieces of the day I first saw the DSM-V’s new classification of Autism Spectrum Disorder. My young daughter was in the living room with her in-home occupational therapist. The therapist carefully pushed and pulled on a large bubblegum pink ball, gently rocking my daughter’s tiny body that laid draped over it. I remember that morning, before the therapist arrived, using a purple Shark handheld steamer and scrub brush to get the toothpaste out of the tiny wooden slats of the bathroom cupboard door to erase the remnants of my daughter’s most recent sensory-seeking adventure.

While my daughter was momentarily calm and content with the therapist, I checked my email, and I simply could not understand what I was seeing. When the OT was packing to go, I asked if she’d seen this new classification yet. She confirmed that this was the way things were going, and moreso, she expressed her concerns that professions like hers were about to be overrun with demand. She worried this would mean that children like my daughter would lose hours of service as her field worked to meet broader swaths of the community. I didn’t even make it through a single conversation after the release of the DSM-V before hearing the first seed of division being planted.

I asked her where PDD-NOS went, assuming they just moved it to another section? At that moment, the OT became the first person to tell me that my brother and my daughter now had the same diagnosis, Autism Spectrum Disorder, just different levels based on support needs–shocking!

I don’t think the clarity of certain pieces of that day are born out of trauma. I don’t remember feeling sad or scared or anything outside of complete confusion. For whatever reason, nonetheless, my brain has found cause to mark this day as significant in the course of my life.

The rest of that day is just a blur that blends into years of undulating personal understanding of disability, language, and values. That personal understanding is ever evolving, and I wonder if the me ten years from now will want to high-five or face-palm the me of today. We have all come so far, learned so much, and yet still undoubtedly have so much to learn.

The neurodiversity movement has challenged us. As is often the case in periods of great change, the community polarized, and at times extreme edges of both opposing sides were really ugly towards one another. In spite of the darker parts of the process, society listened to the voices of countless self-advocates and subsequently shed much of its bias and shunned harmful abuses. For that, we can all celebrate.

Some level of absurdity is an inevitability during times of great change. The past decade has been no exception. Chants of “nothing about us without us” filled rooms where service dogs were universally accepted as having the ability to analyze and meet their handlers’ human needs while parents were simultaneously accosted for daring to speak in proxy for their nonverbal children with intellectual disability who required their 24/7 support.

Over the past five years since receiving her ECF Choices waiver, my now 20 year old daughter has been isolated more and more from her community. I could not possibly even estimate the number of times I’ve had to physically intervene to stop her from aggressing at me or others, banging her head on the floor, biting her own arms, smacking her own face, or flipping the couch and destroying any property in her path–in many instances after being denied access to things so many of us take for granted, such as simply being able to go to Walmart. She is constantly battling a world of access-denied due to not having appropriate support.

At any time in these past five years, I could have dropped her off at an emergency room, and the state would have assumed the burden of placing her, likely in some far distant out-of-state highly-restrictive setting. In fact, some physicians and MCO administrators encouraged me to do exactly that in response to my pleas for additional support to provide her access to her community. Again, we see absurdity.

“Nothing about us without us.” We’ve come full circle, and the pendulum shift of change has gone too far. Individuals with profound autism and related conditions are now shut out of society, hidden too far away from the broader community for others to notice their screams, as if the walls of Willowbrook itself still enveloped them. Many of the “evidence-based” policy changes of the past decade are now manufacturing an unnecessary and preventable crisis for people who have no access to the qualified staffing they need to live, work, and play in their homes and communities.


Improving Health Care Access for Autism and Disabilities

Irene Tanzman, Kevin, M.D., November 21, 2023   

In September 2023, President Biden announced health care provider training, allocating over $8 million through 18 awards to train primary care medical students, physician assistant students, and medical residents in providing culturally and linguistically appropriate care for individuals with limited English proficiency, as well as those with physical or intellectual and developmental disabilities.

Individuals with severe and profound autism deserve special consideration when it comes to accommodating their health care needs, as they face unique challenges.

Adults with autism have an increased risk of premature mortality compared to the general population, with a mean age of mortality at 54 years compared to 70 years. This risk is even more pronounced for those with lower functioning abilities, where the mean age of mortality drops to 40 years. Limited research on health care barriers suggests that health services, funding, and physician training are not yet adequately meeting the needs of this population.

These individuals may struggle to communicate their pain or discomfort and may resist cooperating with medical procedures. Moreover, they may lack an understanding of nonverbal cues and find unfamiliar environments and procedures extremely frightening. It often requires years of desensitization programming and behavior modification for individuals with severe autism to become comfortable with medical tests and procedures. Some may even display aggressive or self-injurious behaviors when faced with medical procedures, necessitating collaboration and brainstorming among health care professionals and other caregivers. This is a complex issue.

The Biden administration believes that a mere $8 million can help individuals with intellectual and developmental disabilities access health care. However, addressing the challenges faced by this population is not as straightforward as such a small funding amount might suggest. Furthermore, by grouping this effort together with assisting individuals with limited English proficiency, the administration may overlook the distinctive nature of the challenges posed by severe/profound autism.

According to the National Council on Severe Autism, autism policy has shifted away from addressing the needs of children and adults severely disabled by autism, instead focusing on solutions more suitable for those with milder disabilities who can self-advocate. If this provider training initiative is intended to address the needs of individuals with severe/profound autism, the Biden administration risks trivializing the challenges faced by these families.

Read the article here

Connecticut Group Home 'Failed' to Supervise Disabled Residents before Sexual Assault

By Josh LaBella, CT Insider, November 20, 2023

State-certified caregivers failed to properly supervise a developmentally disabled teenager in the moments before he sexually assaulted a disabled woman at a group home, according to the findings of a report released Monday.

In a 42-page investigative report, the state Office of Child Advocate’s recommended lawmakers adopt stronger protections for intellectually disabled residents living in state-licensed housing across Connecticut and to take other steps to prevent future lapses. 

The report also concluded that the state Department of Developmental Services did not properly document more than 100 incidents.

According to the report, the OCA received a complaint about an incident between a minor boy and a young adult woman at a community living arrangement where the boy was "compelling sexual intercourse" onto the young woman in her room. Both the boy and the young woman are developmentally disabled and were unsupervised at the time of the incident, it said.

"In my opinion I feel that we as an agency failed both John and Jane," one staff member said to DDS after the incident. "Had he still had (one staff member to one individual) staffing, this incident would not have occurred because he would not have been left alone."

The report found that both staff members at the facility were eating dinner at the time of the sexual assault, which gave the boy the opportunity to go into the woman's room alone.

The report noted that the boy had a history of "sexually reactive" behaviors, adding the Connecticut Department of Children and Families was his legal guardian at the time of the incident. It said DCF records on the boy did not contain adequate information concerning his needs and service plan.

Despite state law and DDS policy, the report says, the community living arrangement did not promptly report the incident, or a prior incident with the same boy, to DDS or DCF as a critical incident or suspicion of child abuse or neglect.

The report said DDS did not adhere to agency requirements for prompt and complete follow-up to ensure that concerns identified by regulators and investigators were addressed in a timely manner.

As a result of this incident, the report said, the OCA undertook a broader investigation into the state’s framework for "ensuring the delivery of safe care to individuals with intellectual and developmental disabilities" in state-licensed community living arrangements.

The OCA's investigation highlighted 15 major findings, the report said.

Those findings said that while DDS and DSS have made strides toward reporting incidents and making those reports available to other agencies, more than 100 critical incidents had not been reported in a timely manner or at all in a 2021 study.

The report said DDS was unable to provide a breakdown of the unreported incidents, including how they were investigated by staff and how many led to substantiated findings of neglect. It also found that DDS lacks the resources to consistently and promptly visit community living arrangements facilities to ensure corrective actions have been implemented. The lack of follow-up takes place "even when there has been a citation for failure to report a critical incident and/or where corrective actions have been required for health and safety reasons," the report said.

DDS also lacks resources to ensure independent investigations of allegations of abuse and neglect of people living in licensed CLAs, the report said, adding the agency often relies on providers to self-investigate the majority of incidents and report back to DDS. 

The OCA also found that only 10 percent of DCF caseworkers and supervisors have participated in a training implemented after the homicide of a developmentally disabled child in 2017, the report said, noting the training was meant for staff to learn the unique safety needs of children with disabilities. The report said there is still "significant concern" regarding recruitment and retention of staff caring for individuals with disabilities in community living facilities.

"Providers throughout the state have reported significant staffing vacancies, and several have publicly reported that funding deficiencies and reimbursement rates for delivered services have profoundly impacted their ability to maintain or offer services for vulnerable consumers," it said. 

The report made 13 recommendations for DDS licensed community living arrangements to take in order to better protect vulnerable individuals living in their care.

The report said the recommendations included amending state law to strengthen the licensing requirements and regulatory oversight for DDS community living arrangements. It also recommended one unannounced visit at each facility per year, with mandatory re-visits when health and safety violations are found. 

The report also calls for laws to mandate reporting of inspection and corrective action documents by DDS, as well as to require DDS and DCF to report investigative findings to state databases. It also calls for the agencies to be legally required to inform consumers, parents and guardians when they find program concerns or programmatic neglect.

The OCA also recommended the state budget increase resources to community providers delivering "essential services to vulnerable populations, including children and adults with intellectual and developmental disabilities" in order to address workforce development and to better services.

Read the full article here

NOTE: In 2016, the Inspector General of the US Dept. of Health and Human Services issued a report stating that up to 99% of incidents of abuse and neglect were not being properly reported to state authorities. Read the report here

Read a related article in CT Mirror

Read a related article in CT News Junkie

The Arc of the United States Names Katherrin Neas as it Next CEO

Press Release from the Arc, November 20, 2023

The Arc of the United States today named Katherine (Katy) Neas as its new CEO. Katy brings more than 35 years of experience in disability policy and public and nonprofit leadership to the role. Her tenure with The Arc of the US will begin in January 2024.

Katy joins The Arc from the U.S. Department of Education, where she served as Deputy Assistant Secretary in the Office of Special Education and Rehabilitative Services. Prior to that role, she was Executive Vice President of Public Affairs for the American Physical Therapy Association (APTA) and for Easterseals. She is Past Chair of the Consortium for Constituents with Disabilities (CCD).

Earlier in her career, Katy served as Legislative Assistant to Senator Tom Harkin and the U.S. Senate Subcommittee on Disability Policy, where she worked on landmark legislation such as the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). Katy holds a B.A. from Georgetown University.

“Stepping into this role as CEO of The Arc feels like coming home,” said Katy Neas. “Throughout my career, I’ve been lucky to work arm-in-arm with fierce advocates and caring providers to drive progress. That open collaboration and trust is what makes The Arc so special – never losing sight that we do this WITH people with disabilities, not just FOR them. I’m in awe of The Arc’s profound legacy, from pioneering special education access to spearheading community living. Now, I’m honored to continue that legacy into the future, but we won’t rest on past wins. Together with families, self-advocates, and partners, we’ll build an even stronger organization to meet the challenges ahead. I can’t wait to listen and learn from every corner of this community and lead inclusively into the next era of success. The Arc’s brightest days lie ahead.”

As CEO of The Arc of the United States, Katy will be responsible for leading the nearly 75-year-old organization and its Washington, DC-based national office for 578 chapters across the United States. She steps into the role at a pivotal moment for disability rights, as issues like the caregiving crises, ongoing exclusion from schools and workplaces, and threat of losing hard-won civil rights have made The Arc’s mission more crucial than ever. Katy will build upon The Arc’s legacy and thought leadership among disability and civil rights groups while advancing its mission to ensure people with IDD can lead full, meaningful, and self-directed lives.

Read the full press release here

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VOR Bill Watch:

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

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

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - 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.


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.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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