September 29 2023

VOR's Weekly News Update

VOR is a national non-profit organization that advocates for

high quality care and human rights for all people with

intellectual and developmental disabilities.

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This Week's Newsletter:

This week, the articles that arrived in our inbox further illustrate patterns of inadequate services and protections throughout the American system of services for people with intellectual and developmental disabilities and autism (I/DA).

Actions by those who oversee this system continue to focus on self-advocates and people who are most easily accommodated by one-size-fits-all solutions while neglecting the needs of those at the severe/profound end of the spectrum (see the press release below on HHS and ACL on their recent 3 1/2 hour online celebration of the 50th Anniversary of disability rights under Section 501).

As always, we need to speak out. We need to be recognized by those who control the DD System. We need to increase our numbers, and our funds, to continue to be a voice for those who cannot speak for themselves...

Our Fall Membership Campaign

We are asking our members to reach out to people in your neighborhood, your town, your state,

or on Facebook and other platforms,

to help us to grow a larger community of families

who are concerned about the

shortcomings of our DD System,

the biases against those with the most severe and profound I/DD and autism

and the erosion of choice in residential services and

employment opportunities

for our loved ones.

Please Click Here to Join, Renew or Donate

Personal Stories Wanted

We are seeking personal stories from our families.

We'd like to hear about the quality of care your loved one receives, whether in a pubic or private ICF, a group home, or with supports in your own home.

We'd like to hear about your loved one's day program, or the work they partake in at a sheltered workshop.

We'd like to hear ideas for how well your state's

DD Services System is working for your family, how things might be improved, and what forces are at play in your state to preserve choice, especially for those on the more severe or profound end of the I/DD and autism scales.

Please contact us at [email protected]

If you can write a paragraph or two, or a page or so, and include pictures, we'll try to put as many as possible into the next print issue of


Back Issues of VOR's Weekly Newsletter are available on our web site.

Please Click Here!

State News:

Massachusetts - There Are No Words Abuse and Neglect in Residential Schools for Children with Severe Autism

By Liz Kowalczyk with Patricia Wen, The Boston Globe Spotlight Team, September 27, 2023

They are among society’s most vulnerable — children with severe autism — and yet many endure abuse or neglect in the state-licensed residential schools that care for them. With not enough accountability and scant public disclosure, it is an invisible crisis. 

A caretaker at Sean’s group home insisted that he had caused his own injuries late that March night. That the young man himself was to blame for the shattered front tooth, the gash in his swollen lower lip that required seven stitches.

Sean is severely autistic and speaks only in one- and two-word clips, so he could not explain what had happened. His parents raised him at home until his needs became just too much. Enrolling him in a residential school, this one run by The Guild for Human Services in Concord, was the hardest decision they had ever made. But they dreamed Sean would become more independent, make friends, and in time discover meaningful work.

That dream became a nightmare — a nightmare captured on video.

When police officers and state investigators watched the group home’s security camera footage from that night last year, they saw no sign that Sean, 20, had hurt himself. Rather, what they saw was an eight-minute unprovoked assault by caretaker Jimmy Kimera during which he repeatedly tripped, knocked down, kicked, and stomped on Sean, according to investigation reports obtained by the Globe. The attack apparently began when Sean came to Kimera and a co-worker for help when he couldn’t sleep. In doing so, he kept them from sleeping. Fury followed.

A brutal assault in a state-licensed facility was shocking, but it did not come without warning. Massachusetts officials charged with protecting this vulnerable population have been repeatedly alerted to the hazards in these facilities in reports that have called for improvements.

Beginning a decade ago, members of a special commission on autism raised red flags that group homes for autistic people were substandard, warning that low pay, poor training, and high turnover among staff could create an “unstable and potentially dangerous environment.”

In 2017, the state’s Office of the Child Advocate focused specifically on residential schools, which include group homes for students, after families accused staff at a school that enrolled autistic boys in Great Barrington of repeated violence against students. Consultants concluded that regulators did not routinely collect and monitor certain key safety information, such as staff turnover, tenure, and excessive overtime. They still don’t. The child advocate agency promised that the significant workforce problems would be addressed later. But while state officials have taken some limited steps, there has been no comprehensive response to address the pervasive deficiencies.

And as families waited for answers, hundreds more students with disabilities have been harmed or put in harm’s way at group homes that are part of taxpayer-funded residential schools, according to a Globe Spotlight Team investigation, which gathered and analyzed information scattered throughout multiple agencies, police departments, and courthouses.

The details unearthed by the Globe publicly document for the first time the mistreatment students like Sean have experienced, information that his parents had no easy access to when making their decision to place him in the home. While such information is available in bits and pieces to people who file public records requests, or travel from courthouse to courthouse, the state provides none of it to families reviewing the suitability of residences.

The Globe examined 13 residential schools that specialize either solely or partly in students with autism, a diagnosis that has soared in recent years. State regulators have documented nearly 1,000 licensing and safety violations during almost 450 separate investigations at those schools’ residences since mid-2016, the Globe found. The vast majority of the violations were concentrated in half of the schools.

Furthermore, the state’s child-protection agency, the Department of Children and Families, supported allegations of abuse or neglect against employees at these schools in more than 80 investigations since mid-2018, according to data obtained by the Globe.

In dozens of other cases examined by the Globe, caretakers were immersed in their personal cellphones or otherwise preoccupied, enabling unsupervised students to run away or engage in other harmful behavior. Conditions became so chaotic in some group homes that law enforcement was summoned. Police found one youth walking along a rural road at 4 a.m., stopping cars to say he was lost and thirsty. He had been missing for almost six hours before anyone in the autism program at Devereux Advanced Behavioral Health based in Rutland noticed.

Unsupervised students also have had sex with one another or sexually assaulted other students, in some instances at residential schools that treat children whose diagnoses include inappropriate sexual behavior and where the risks of leaving them unattended should be well known.

It is difficult to determine the exact number of children with autism who have faced mistreatment based on gaps in how the state provided records to the Globe. And the harm is not limited to students with this diagnosis; some of these schools also treat youth with intellectual disabilities and serious mental health problems.

In all, the state licenses 176 individual residences that are affiliated with 34 schools. They include a range of living arrangements; some students live in group homes near the school or in surrounding communities while others reside in dorms on campus. The Globe focused on schools with an autism specialty because of the increase in diagnoses, the discovery of several disturbing cases, and the unique challenges involved in investigating cases when the victim is nonverbal.

The agencies that oversee these schools and students fail to disclose these searing realities to families desperate for a top-notch program — families that might push for improvements, or accountability, if they knew more.

Unsupervised students also have had sex with one another or sexually assaulted other students, in some instances at residential schools that treat children whose diagnoses include inappropriate sexual behavior and where the risks of leaving them unattended should be well known.

It is difficult to determine the exact number of children with autism who have faced mistreatment based on gaps in how the state provided records to the Globe. And the harm is not limited to students with this diagnosis; some of these schools also treat youth with intellectual disabilities and serious mental health problems.

In all, the state licenses 176 individual residences that are affiliated with 34 schools. They include a range of living arrangements; some students live in group homes near the school or in surrounding communities while others reside in dorms on campus. The Globe focused on schools with an autism specialty because of the increase in diagnoses, the discovery of several disturbing cases, and the unique challenges involved in investigating cases when the victim is nonverbal.

The agencies that oversee these schools and students fail to disclose these searing realities to families desperate for a top-notch program — families that might push for improvements, or accountability, if they knew more.

The Department of Early Education and Care (EEC), which licenses the residences but not the schools themselves, acknowledged that “there are areas for significant improvement” and that regulations for these schools “have not been meaningfully updated since 2005,” said spokesperson Alana Davidson.

After then-governor Deval Patrick created a special commission on autism in 2010, the group’s initial report cited a “staggering” increase in the number of Massachusetts children with autism.

Four percent of children here have autism, significantly higher than the US average and second only to Delaware, according to a 2019 national parent survey. The high prevalence could be because parents have ready access to pediatricians who are knowledgeable about the diagnosis and insurance coverage to pay for doctor visits. Some families also have moved to Massachusetts specifically to utilize the widespread autism services.

A little-understood brain disorder that stretches over a spectrum of severity, autism typically includes difficulties with communication and social interactions. Those with a milder form of the disorder once referred to as Asperger syndrome often have above-average intelligence. On the other end, 30 to 40 percent of autistic children have an intellectual disability. They also can have one or more specific characteristics; 25 to 30 percent are nonverbal, while 30 percent engage in self-injurious behavior. Anxiety, depression, ADHD, and aggression are also common.

In Massachusetts, more than 28,000 children with autism are enrolled in special education programs – six times the number two decades ago. The vast majority attend public schools or private day schools. But when a child is unsafe at home or has overwhelming educational needs, a residential school is one of the only options.

The cost to taxpayers is staggering: $200,000 to $400,000 a year per child. The price typically includes year-round classroom instruction in small groups and a home with around-the-clock staff who cook meals, teach personal hygiene and social skills, and drive students to school and other activities.

About 2,000 students attend residential schools here, a large portion with autism. Julia Landau, a lawyer with the Massachusetts Advocates for Children, said for certain children, these schools are “a lifeline.”

But for others, they have been places of peril and chaos.

Read the full article here

View a video interview with the author of this article here

(These links may require a subscription to the Globe, but they are offering an introductory rate of $1 for 6 months.)

Massachusetts - DDS Confirms 91 Vacancies in State-Operated Group Homes Even After Several Homes Are Shut

By Dave Kassel, The COFAR Blog, September 29, 2023

The Department of Developmental Services has confirmed for the first time that there are dozens of vacant beds in its state-operated group home network, even though the Department also says it has closed a net of nine homes since August 2021.

That information was provided to us in response to a Public Records Request, which we filed earlier this month with the Department.

In a response on September 26 to our request, DDS stated that as of June 30, there were 91 vacancies in the state-operated group home system.

COFAR has long contended that there are vacancies in state-operated homes because DDS generally does not inform individuals seeking residential placements of the existence of that system. Instead, DDS seeks to place virtually all persons in its much larger network of corporate provider-run group homes.

We are frequently told by families seeking placements for their loved ones in the state-run system that there are no vacancies in state-operated homes.

DDS also does not inform or generally admit persons to either of its two remaining Intermediate Care Facilities (ICFs) in the state – the Wrentham Developmental Center or the Hogan Regional Center. As a result, the number of residents living in state-run residential facilities has continued to decline, while the number in corporate run group homes has been steadily increasing.

COFAR has periodically filed Public Records requests with DDS to track the declining census in both the state-operated group home system and the Wrentham and Hogan Centers. The Wrentham and Hogan centers are the last remaining, congregate ICFs in the state.

DDS has continued to maintain that the corporate provider system is less restrictive and better integrated into the community than is the state-run residential system. However, as a Spotlight investigation by The Boston Globe (Note: See article above) showed on September 27, the corporate group home system is beset by abuse and neglect.


Pennsylvania - Merakey Will Close Woodhaven Center, Move Its Intellectually Disabled Residents to Group Homes

By Harold Brubaker, The Philadelphia Inquirer, Septemberf 28, 2023

Merakey, a large provider of behavior health and intellectual disability services, announced Wednesday that it will close Woodhaven Center in Northeast Philadelphia and will help the facility’s 44 residents move to homes in the community.

The transition, which is expected to be completed by January 2025, fits with a long-term push by state regulators to end institutional care for people with intellectual and developmental disabilities. That has included the closure of state-run facilities in recent years.

“The number of people who reside in state institutions has dropped dramatically in the last 30 years, and the decision to transition our residents from Woodhaven to community living is the next step in that process,” said Joe Martz, CEO of Merakey, which is based in Lafayette Hill.

Woodhaven Center employs close to 150 people. “It is our hope that staff who provided care at Woodhaven will make this transition with us and continue to provide great care for our residents at their new homes,” Martz said.


Wisconsin - Helping Hands Group Home to Permanently Close; DHS Investigating Other Locations after Abuse Allegations, Milwaukee Alderman Says

By: Ellie Nakamoto-White, CBS-58, September 25, 2023

Nearly three weeks after CBS 58 first broke reports of physical, verbal, and emotional abuse allegations toward a Milwaukee group home on S. Sunset Dr., both city and state officials said Monday the location will permanently shut down.

Throughout the month of September, CBS 58 spoke with multiple former supervisors and caregivers at different locations for Helping Hands on 75, who decided to come forward with claims of witnessed abuse and neglect from other employees toward clients -- many of whom are disabled or have special needs.

CBS 58 also spoke with Katherine Hauglie, the mother of a former client who'd been under Helping Hands care for several years, after her nonverbal and autistic adult son was seen on cellphone video being violently hit by a caregiver on July 9.

A protest was held in support of her son, which later prompted our investigation.


That caregiver has since been fired, arrested, and charged. He will be in court on Oct. 3. 

On Sept. 25, concerned neighbors and affected families met with District 11 Ald. Mark Borkowski and State Rep. Bob Donovan (R), who held the public meeting to address concerns.

“I confirmed it this morning, that even though this home is under investigation, they will be permanently closing this facility," Ald. Borkowski said, referencing the Sunset Dr. location, amid cheers and applause from residents.

The alderman told CBS 58's Ellie Nakamoto-White he first heard complaints "a year and a half ago."

But neighbors said reports to 911, police departments, and the state Department of Health go back years.

“To realize that this is going on in our own neighborhood next door, at their other facilities, you know, what hasn’t been said," said Christine Zachar, who lives by the Sunset Dr. location. “Caretakers throwing people down, hands around the neck, choking, slaps, calls for help... we're not going to let it go." 

Zachar was joined by several holding signs of support, including Hauglie, who came with photos of her son's reported abuse. “My son can’t speak, so that’s why I’m here. I’m speaking for him and I’m gonna fight till the end," Hauglie said. 

The Wisconsin State Department of Health Services (DHS) lists several group homes all under the same Helping Hands on 75 ownerships.

Rep. Donovan said he spoke with the owners of the homes earlier Monday, who said they were "backing away, certainly, from this home."

"I’m told within the next couple months, they will probably be shutting down the other homes as well," Rep. Donovan said. “I think they’re decent guys, they realize that there were problems, they’ve attempted to try their best to rectify some of them. I think they just got in over their head.”

But former Helping Hands employees CBS 58 previously spoke with said the owners had been well aware of the numerous issues, from client abuse to claims of sexual assault between employees and also toward clients, to some caregivers smoking marijuana on the job, and more.

Officials said they are continuing to work with police and the DHS who are investigating the rest of the Helping Hands locations.


If you have any information, please email [email protected].

Read the full article here

Minnesota - Are Alexandria Area Group Homes at Risk of Closing Because of Staffing Shortages? 

By Celeste Edenloff, Echo Press, September 22, 2023

When Natalie Lind was born, she was diagnosed with several disabilities, including autism and down syndrome. At age 8, she was moved to a group home and has lived in that type of setting for nearly 30 years.

“She was moved because of a vast variety of behaviors and an overwhelming need for more care than one family could provide,” said her father, Curt Lind of Alexandria. “It was absolutely the hardest thing as a parent I have ever done.”

Natalie has lived in group homes in Hutchinson, Willmar and for the past 11 years, she has been in a group home in Alexandria.

And Curt is hoping that is where she will stay. However, because of the staffing shortage crisis, group homes in the this area could face being shutdown, he said.

“I’ve just seen over the years, less and less people willing to be a part of a group home environment and to work and care for these individuals,” said Curt, noting that it is not just the group home setting, but many other healthcare type facilities that are having a hard time finding employees. “This is a healthcare situation. It is a real crisis.”

Kayla Kemp is a former direct support professional who worked at a group home in Alexandria. When the COVID-19 pandemic hit, she said the group home she worked at, along with all other homes and facilities, suffered detrimentally. And that they continue to suffer.

There were times she was working 18 to 22 hour shifts. Typically, however, she would work 12 to 18 hour shifts. And there were times, she said, she would work 25 to 30 days in a row. Counting herself and the director, there were usually only about four to five people on staff total. She noted that this was when she worked there and that things could be different now.

Rod Helling is a former group home program director who managed a home in Alexandria for a large group home organization. He said that more people are leaving these types of jobs than being hired. And those who are being hired are not willing to take the most needed shifts.

“Residents are taken care of well by qualified, trained and caring staff but not to the full extent and care level the program is designed for, so that is concerning,” he said.

He said staff members who stepped up to the challenge of working so many hours, whether it was because they wanted to or felt forced to, undoubtedly affected many of them, causing them to quit. He said they were and are being physically and mentally burned out.

Both Helling and Kemp said that there is a potential for homes to be shut down.

“If there isn’t enough staff to cover shifts, no matter how much one cares, one person cannot physically and mentally handle the amount of work that goes into caring for four to six individuals in a group home setting,” said Kemp, adding that especially when you have a family of your own to take care of.

One of the reasons she continued to work so many hours was the fear of the home she worked at being shut down. If it had, the individuals who had been together for more than 30 years would have been split up.

“It would have been absolutely devastating for them. They are used to routine, used to each other,” she said. “If they got split up, I can’t imagine what that would do to their emotional and mental health.”

Eventually for Kemp, she did have to resign.

“Unfortunately at the end of 2021, I left my position because at that point, I had to choose between my family and my work family,” she said. “I basically lived at the group home and it broke my children’s hearts to have me gone so much. I had to make the gut wrenching decision to resign.”

Read the full article here

Maine - Parents, Providers Weigh In on Building a New System for People with Disabilities

The "Lifespan Waiver" would provide more comprehensive services at age 14 to help those with disabilities transition into adulthood.

By Vivien Leigh, News Center Maine, September 22, 2023

It's a huge undertaking—Maine is currently building a new system for children and adults with developmental and intellectual disabilities. 

The "Lifespan Waiver" would provide more comprehensive services at age 14 to help them transition into adulthood. The program is expected to clear years-long waitlists and provide more opportunities to live independently. However, some families fear a new system will eventually cause much-needed services, like group homes, to disappear.

"Her housemates are her friends; they have been her friends since high school," Debbie Dionne explained about her daughter Kate. 

Kate lives in a group home in Brunswick. She has cerebral palsy and an intellectual disability following a traumatic birth 43 years ago. Staff help her live independently, which would be difficult for Debbie and her husband to do for their daughter. Another worry, 75 group homes have closed their doors in Maine amid low Medicaid reimbursement rates. 

"If she were to lose this housing, I am 71 and we are aging; my home is not accessible. I do worry," Debbie said with fear in her voice.

Parents have been raising many concerns since the Maine Department of Health and Human Services announced a new plan last spring, revamping the state's services system for children and adults with intellectual and developmental disabilities. Families of special needs children must apply for different waivers for home and community services based on their needs, primarily paid for by federal Medicaid dollars. The Lifespan Waiver would enroll children as young as 14, eliminating waivers and wait-for lists across their lifespan.

"Our goal around Lifespan is that a person can stay in one wavier and not have to switch and get the services they need as they age," Betsy Hopkins, the associate director of the DHHS Office of Aging and Disability Services, said. 

Hopkins said under Lifespan, people can continue to live in group homes and receive services under Section 21 and Section 29.

DHHS officials, who have been gathering comments from the public over the summer, are currently holding listening sessions with parents and providers. Lucinda Turcotte is an adult case manager with Brighter Heights Maine, which provides several services, including case management for special children and adults. Severe shortages of skilled staff to work with this vulnerable population are still a big concern, as is funding.

"We are being told we are developing another waiver that will not have a waitlist. I am not confident that is a guarantee. We all know the funding has to go through the Legislature," Turcotte said.

A current rate study could improve pay for direct support workers and agencies. Lifespan still needs


Georgia - ‘First of its kind.’ $7M, 16-bed crisis center for people with disabilities coming to Macon

Georgia’s Department of Behavioral Health and Developmental Disabilities is partnering with a Macon-based provider to open a healthcare center specifically for people with intellectual and developmental disabilities, or IDD. Leaders say it’s the first of its kind in the country.

Set to open in 2025, more than $7 million from the state is funding the construction of a 16-bed crisis unit in Macon for people with IDD to be run by River Edge Behavioral Health with support from Mercer University. Staff and community members broke ground on the site located near downtown Macon on Wednesday morning.

Commissioner of the Department of Behavioral Health and Developmental Disabilities Kevin Tanner said on average in Georgia, 21 people with IDD get “stuck” in emergency rooms each day.

“And that’s not the proper place for them,” Tanner said. “They need to be somewhere they can have the right treatment and the people who understand how to treat them properly.”

Some people may end up boarded in an emergency room for months. Tanner said the so-called crisis stabilization diagnostic center will provide inpatient care for no longer than 90 days.

“The day someone walks into this building, we’re going to start the discharge planning process,” Tanner said, in order to connect people to permanent housing and long-term support faster.

But behavioral health staffing shortages may pose a problem down the line.

In West Macon, a 24/7 crisis service center operated by River Edge has been closed for months — a sign on the door points to pandemic-related problems, and encourages people to call another one of River Edge’s crisis centers in Baldwin County, about 40 minutes away, if they need help.

River Edge CEO Cass Hatcher blames the temporary closure on staffing shortages, and said they’re working on getting the crisis service center opened in the next couple months.

The closed center had nine temporary crisis beds. This new center will have 16, and Hatcher said it will need about 60 staff members to be fully functioning.

“We’re working closely with the governor and the General Assembly and we’re hopefully going to be able to get some additional funding for our staff,” Tanner said about the department’s plan to address staffing shortages. “We also are looking for some incentive funding for our crisis centers to be able to get them fully staffed.”

Read the full article here

National News:

September 26th was the 50th Anniversary of the Rehabilitation Act of 1973. The Department of Health and Human Services, the Administration for Community Living, and several affiliated organizations held an almost 4-hour presentation on Zoom to celebrate. The participants praised one another for their accomplishments in protecting the rights of people with disabilities, and in helping many individuals with physical and sensory disabilities to integrate into their communities. While we applaud the successes of these many accomplishments.

However, missing from the presentation were any people with severe or profound intellectual disabilities or any acknowledgement of the need for services. Missing from the presentation was any acknowledgement of the Workforce Crisis and shortage of DSPs that is eating away at the system they created.

An uninformed person would have been given the impression that people with disabilities make up a monolithic community that is on the verge of fully integrating into and being accepted by the society around them.

Here is what HHS and ACL had to say about their accomplishments:

HHS Secretary Xavier Becerra Statement on the 50th Anniversary of Signing of the Rehabilitation Act of 1973

Press Release from the Department of Health and Human Services, September 26, 2023

“Fifty years ago, the Rehabilitation Act of 1973 (Rehab Act) was signed into law, marking a turning point in our nation’s civil rights history. The Rehab Act authorized services that support disabled people in living the lives they want to lead, fully included in their communities. The law established accessibility standards for information technology, which are crucial in today’s high-tech world, and more. 

“Perhaps most important, the Rehab Act was the first federal law to prohibit discrimination on the basis of disability. Although it would be another four years before the regulations were established to implement them, those civil rights provisions represent a watershed moment for the independent living movement, which was then in its infancy. The Rehab Act paved the way – and provided a model – for the Americans with Disabilities Act, which extended anti-discrimination protections beyond the federal government, and other federal laws and actions to guarantee the rights of people with disabilities. 

“While we have made great strides in disability rights, we still have work to do. Disabled people still face discrimination and barriers to exercising their basic civil rights. That’s why the Biden-Harris Administration specifically recognized disabled people in its executive order on advancing equity and has prioritized strengthening civil rights protections for people with disabilities. And that’s why HHS has proposed comprehensive updates to our regulations implementing Section 504 of the Rehab Act, which will be a critical tool for fighting disability discrimination.

“I am deeply grateful for their work. Today, we reach for the next step - equitable access to our health care and human services system for all individuals with disabilities.”

Click here to read Secretary Becerra's full statement, and quotes from HHS Deputy Secretary Andrea Palm, Administration for Community Living Senior Official Performing the Duties of the Administrator, Alison Barkoff, Centers for Medicare & Medicaid Services Administrator, Chiquita Brooks-LaSure, HHS General Counsel, Samuel R. Bagenstos, and other agency officials.

In About-Face, NIH Designates Disability As A Health Disparity

By Michelle Diament, Disability Scoop, September 27, 2023

Facing an uproar from disability advocates, the National Institutes of Health says it will move forward with plans to put more resources toward addressing health care disparities among people with disabilities.

The agency said this week that it will officially designate people with disabilities as a health disparity population.

The label applies to groups that “experience significant disparities in their rates of illness, morbidity, mortality and survival, driven by social disadvantage, compared to the health status of the general population,” the NIH said.

Disability advocates have argued that the classification would open the door to funding for research on the disparities experienced by people with disabilities, encourage recruitment of researchers with disabilities as well as research participants with disabilities.

“This designation recognizes the importance and need for research advances to improve our understanding of the complexities leading to disparate health outcomes and multilevel interventions,” said Dr. Eliseo J. Pérez-Stable, director of the National Institute on Minority Health and Health Disparities, in making the announcement.

The move comes just weeks after an advisory panel opposed adding people with disabilities to the list of health disparity populations. In doing so, the committee cited worries about the lack of a standardized definition for disabilities and said that the limited staff and budget for these efforts could be “overwhelmed” by applications from such a “broad and heterogeneous” population.

In response, more than a hundred advocates and organizations pressured the U.S. Department of Health and Human Services to override the recommendation arguing that people with disabilities meet all the criteria for a health disparity population and alleging that the decision was “based on ableist assumptions and a biased view of disability.” They also noted that a separate NIH advisory group made the opposite recommendation last year.


Feds Back Effort To Train Doctors On Developmental Disabilities

By Shaun Heasley, Disability Scoop, September 26, 2023

Federal health officials are putting millions into a new effort to train future doctors on how to better care for individuals with developmental disabilities.

The U.S. Department of Health and Human Services’ Health Resources and Services Administration is awarding $8 million to 18 different medical training programs across the nation in order to improve care of those with physical or intellectual and developmental disabilities as well as individuals with limited English proficiency.

The funding will go toward training for primary care medical students, physician assistant students and medical residents, officials said.

“By helping medical schools and primary care residency programs build trainees’ skills and give them hands-on experience caring for individuals with physical or developmental disabilities and individuals with limited English proficiency, we are investing in building a workforce that matches what communities need,” said Carole Johnson, administrator of the Health Resources and Services Administration.

Limited training on how to treat patients with developmental disabilities has been a persistent problem in health care, with a 2022 study finding that just 41% of physicians considered themselves able to provide people with disabilities with a level of care similar to others.

After years of pressure from the disability community, the presidents of the American Medical Association and the American Dental Association said just last year that they would work to expand disability training for medical and dental students, but efforts to add requirements to medical school curricula have so far been unsuccessful.


Medical News:

Dementia Risk in Adults with Intellectual Disability       

Peer-Reviewed Pubilication from Okayama University, via Eureka Alert!, SEptember 25, 2023

Both genetic and acquired factors contribute to the onset of intellectual disability (ID), and people with ID are presumed to be at a higher risk of developing dementia. It is also understood that a lower cognitive reserve–thinking ability gained via learning and conscious mental activity–increases the risk of dementia in the general population. Given the likelihood of a shorter education span and a lower intellectual capacity, it is speculated that dementia is more prevalent in people with ID. However, the prevalence of dementia in people with ID without Down syndrome (DS) relative to the general population is unknown, and the risk factors influencing the risk of dementia aren’t thoroughly established.

Recently, researchers uncovered the prevalence of dementia and identified the risk factors that can lead to dementia among people with ID in Japan. The team was led by Professor Shintaro Takenoshita, Assistant Professor in the Department of Neuropsychiatry at Okayama University Hospital, Japan. Their findings were published in the journal Alzheimer’s Research & Therapy on 18 July 2023. “Diagnosing dementia in people with ID is difficult owing to the mixed effects of innate cognitive decline and the cognitive decline that occurs over time due to dementia. However, it is quite possible to diagnose dementia if cognitive and lifestyle functions are assessed chronologically based on information from family and other support persons. We believe that even in persons with intellectual disabilities, dementia needs to be properly evaluated,” explains Prof. Takenoshita regarding the group’s motivation to pursue the study.

The team surveyed the severity of ID, educational history, and comorbidities across 1,831 participants in residential treatment facilities spread across Japan. The relevant data was collected by interviewing caregivers of all the participants, and a direct examination was performed–using clinical criteria for dementia and neurocognitive disorders–for participants suspected of having cognitive decline.

Emphasizing the report’s key findings, Prof. Takenoshita says, “We found that 6.44% of the participants were diagnosed with dementia. Furthermore, our analyses revealed that dementia was more prevalent in younger people with ID compared to the general population. Lastly, we pinpointed seven factors with significant links to dementia. These were hypertension, depression, stroke, age, severity of ID, duration of education, and traumatic brain injury.” These findings are expected to enable better screening for dementia and improve the support and medical care for people with ID. It is important to note that some of the risk factors are modifiable. Therefore, depending on a patient’s profile, providing adequate education, preventing head trauma and stroke, and making hypertension and depression medications readily available could be the first steps in preventing the onset of dementia in people with ID.      


Mental Health Issues Emerge with Shifts in Autism Traits Across Childhood

By Charles Q. Choi, Spectrum News, September 27, 2023

Both an increase in the severity of social-communication issues and a decrease in restricted and repetitive behaviors over time could up an autistic child’s vulnerability to anxiety and other mental health conditions, a new study finds.

These findings underscore the notion that some restricted and repetitive behaviors may help autistic people. “Perhaps not all types of repetitive behaviors should be a therapeutic target,” says co-investigator Einat Waizbard-Bartov, a graduate student researcher of psychology at the University of California, Davis. “Our findings caution clinicians to consider the value of attempting to eliminate repetitive behaviors from an autistic child’s behavioral repertoire.”

Autistic children often experience changes in the severity of their autism traits during their grade-school years. Trait severity increases in 16 percent of autistic children from ages 6 to 11 and decreases in 12 percent of autistic children in this age range, according to a previous study.

Many mental health challenges also develop during middle childhood, loosely defined as ages 6 to 12. About 70 percent of autistic children have at least one mental health condition, and 41 percent have two or more, prior work has found.

To see if changes in autism trait severity during middle childhood are associated with mental health issues, Waizbard-Bartov and her colleagues analyzed data on 75 autistic children aged 6 to 11, of whom 15 were girls. As part of the larger Autism Phenome Project, the researchers tracked the changes in autism traits in these children from ages 2 and 3 through adolescence, using the Autism Diagnostic Observation Schedule Calibrated Severity Score, as well as specialized tests focused on social traits and restricted and repetitive behaviors. They also assessed mental health symptoms through parental interviews and questionnaires.

About 21 percent of the children showed increasing severity of social-communication issues. They also displayed elevated levels of anxiety, attention-deficit/hyperactivity disorder (ADHD) traits and disruptive behavior problems, which increased over time.

And nearly 23 percent of the children showed decreasing severity of restricted and repetitive behaviors. But they also displayed higher levels of anxiety that increased over time, with 94 percent of these children meeting the criteria for an anxiety disorder. (There was only a 30 percent overlap between children with decreasing restricted and repetitive behaviors and those with increasing social-communication issues.)

“If these children do repetitive behaviors as a self-regulation mechanism, then not performing them, in addition to the mental effort of intentionally reducing them, may lead to an increase of their anxiety,” says lead investigator David Amaral, distinguished professor of psychiatry and behavioral sciences at the University of California, Davis MIND Institute. Supporting this interpretation, those children who showed increased severity in restricted and repetitive behaviors had fewer mental health challenges. The scientists detailed their findings online in September in Autism.


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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.

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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