From the Stacks
There are literally thousands of journals published around the world that relate to the disability community. It is virtually impossible to capture even a fraction of them. HELEN receives "stacks" of journals and selectively earmarks what we feel are "must read" articles of interest for our readers. It's a HELEN perk.
National Research Center for Parents with Disabilities Loses Critical Funding Opportunity
The National Research Center for Parents with Disabilities—the nation's only research center dedicated to advancing the rights, health, and well-being of parents with disabilities and their families—may be forced to close after the federal government withdrew the funding opportunity that has historically supported the Center before applications could even be submitted.
If the funding opportunity is not restored and issued within the next six weeks, the Center's current federal grant will end on August 31, 2026, bringing an abrupt end to years of nationally recognized research, technical assistance, policy development, and community engagement.
The loss would have far-reaching consequences for millions of Americans with disabilities and the professionals and policymakers who serve them. Parents with disabilities remain one of the most under-researched and under-resourced populations in the United States. Despite representing an estimated 4.4 million parents nationwide, they continue to face significant barriers in healthcare, child welfare, family law, education, and community services. The National Research Center for Parents with Disabilities is the only federally funded center dedicated to addressing these challenges through research, education, policy analysis, and technical assistance.
We are calling on the federal government to restore and issue the funding opportunity so that organizations may compete to continue this vital national resource. Join us by taking action to prevent the Center’s work from ending on August 31, 2026.
As states absorb Medicaid funding cuts, family caregivers face financial ruin
Several states have proposed slashing wages for family caregivers of people with disabilities
In 2018, Kristine Fifer was lucky to avoid bankruptcy.
Her son, Eddie, had lost the nurse provided to him by the state after he turned 22. Maryland health officials told Fifer that he didn’t qualify for nursing care, even though Eddie’s cerebral palsy, feeding tube, and other complex medical conditions require around-the-clock care. Fifer spiraled as she sought to pay for the care Eddie needed. She lost her job, took on heaps of debt as bills piled up, and eventually called a lawyer about filing for bankruptcy.
“I lost everything,” said Fifer, who also has a 13-year-old son.
Then Fifer found out about self-direction, under which the Centers for Medicare and Medicaid Services allows Medicaid waiver participants like Eddie and their families to manage their own care and even receive payment from the state for their caregiving. The program wasn’t perfect and her debt didn’t dwindle, but Fifer was able to catch her breath as she employed her mother and a family friend to look after her son as well. The calls about foreclosing her home stopped.
But eight years later, Fifer’s luck has run out.
Thousands of family caregivers of people with intellectual and development disabilities in Maryland are facing a grim future after the Maryland Department of Health’s Developmental Disabilities Administration proposed steep cuts to their wages earlier this summer. Some caregivers are looking at $20 per hour pay cuts. The new wage tables were slated to go into effect July 1, but pushback from disability advocates delayed the changes to October. They say the cuts will force families to make an impossible choice between going bankrupt and institutionalizing their loved ones in facilities that often face higher rates of abuse and neglect.
“With these new cuts, I’m done. I’m going to foreclose,” Fifer said, fighting back tears. “It’s either I ride it out until the very last day until they kick us out of our home, or I put him in an institution.”
Maryland is not an isolated case. Idaho, Indiana, Missouri and Colorado have all introduced proposals in 2026 that would dramatically slash pay for family caregivers and community care. Ohio legislators even proposed banning family members from being certified caregivers before ultimately dropping the measure. These states’ moves are a sign of the deadline looming over state health departments as the $1 trillion Medicaid funding cut tucked in the 2025 GOP-backed tax bill goes into effect Jan. 1, 2027.
Federal grant delays could jeopardize essential disability services, research
Trump administration targets disability integration mandate in DOJ memo
As FDA misses deadline on electric shock ban, disability advocates speak out
“We know from the past that whenever the federal government reduces Medicaid, almost every state has made cuts to home and community-based services, and that those optional services include paying family caregivers,” said Kim Musheno, senior director of Medicaid policy at The Arc, a national nonprofit that advocates for people with developmental and intellectual disabilities.
Soon after President Trump started his second term and discussed cutting Medicaid funds, disability advocates raised the alarm that home and community-based services probably would feel the brunt of those cuts, since the care is not mandatory. Since then, the Trump administration has targeted family caregivers, with health secretary Robert F. Kennedy Jr. saying in April that Medicaid-funded programs that pay family caregivers are “rife with fraud” and that those caregivers are doing tasks they used to do for free.
Kennedy was not talking specifically about the self-direction program, and data do not exist about the amount of fraud in this type of care. Users of the program have doubled in the last decade to over 1.5 million individuals who manage their own care in the community, according to a 2024 report from AARP. Qualifying for this program differs based on a person’s medical condition and varies by state, but it is most widely used for people with intellectual and developmental disabilities who have high care needs. While financial data on this group is not readily available, people with disabilities are generally poorer and are more than twice as likely to have medical debt than people without disabilities.
In Maryland, there are roughly 3,900 people who self-direct their Medicaid services, often the mother of an adult child with a disability. The proposed wage cuts have some people regretting their choice to participate.
“I was never told that every year that there was going to be some budget meeting, that your salary could be cut or not,” said Monique Duell, who cares for her son, Jeremiah, who has cerebral palsy and is nonverbal. “Had I known a lot of these things beforehand, I probably would not have run with this program, because now I’m left scrambling.”
A caregiver’s pay depends on the type of care they are providing, such as nursing, personal care, community development. The proposed budget would reduce wages across the board. Shari Dexter, one of the co-founders of Concerned Citizens of Self-Direction Maryland, has heard from people who are facing a budget cut from roughly $47 per hour to $29.98.
Duell’s pay would be cut from roughly $41 per hour in 2024 to $29.98 — a daunting prospect when living costs are skyrocketing in Prince George County where she lives.
“How am I supposed to sign a full mortgage when I don’t know from one year to the next what my salary is going to be? We’re supposed to go all the way down to $29.98 an hour. What am I supposed to do with that if I can’t work outside the home?” said Duell, who receives pay for her son’s care and also hired two nonfamily-member providers.
Many caregivers echoed Duell’s inability to work outside the home due to the heavily involved nature of her son’s care. Maryland state officials did not respond to questions about why the caregiver’s wages were dramatically lowered, nor if there were any plans to reverse the cuts after the pushback. Earlier this year, state lawmakers suggested that the budget for home and community-based services had to be lowered or the state would lose its ability to provide Medicaid waivers, but a Baltimore Sun investigation suggested otherwise.
“MDH is committed to … supporting the health, safety, and independence of waiver participants,” said a spokesperson for the Maryland Department of Health. “Our implementation of FY 2027 budget requirements will continue to evolve in response to federal guidance and feedback from the stakeholder community and legislative and federal partners.”
Disability advocates have been personally lobbying officials at CMS to hold off on the budget changes to the self-directed program, even taking out ads displayed on barges that travel along the shoreline in Ocean City, Md.
The advocates are holding out hope that their messages will incite change. They’re already burned out. Duell said the constant stress of caring for her child has led to numerous health problems, including gut pain and heart palpitations. The treatments have placed her further in debt — nearly $40,000 — as she’s set to lose nearly a quarter of her wages. She said she’s at risk of becoming homeless and placing her son at risk of ending up in an institution.
If the budget changes remain, many caregivers will face impossible choices.
Fifer recalled how devastating it was to hear from a parent who contemplated buying a life insurance policy and committing suicide in the hope that the payout would take care of their loved ones. (Most life insurance policies have an exclusion clause that prevents payouts when suicidal deaths happen within a specified number of years after the policy begins.)
She has felt that darkness encroaching, too.
“It’s like some people feel like they’re worth more dead than alive to be able to take care of their loved ones,” she said.
If you or someone you know may be considering suicide, contact the 988 Suicide & Crisis Lifeline: Call or text 988 or chat 988lifeline.org. For TTY users: Use your preferred relay service or dial 711 then 988.
A Daughter of the Cane Fields
As a newly minted doctor fresh from postgraduate training in the United Kingdom, I returned home to Trinidad and Tobago brimming with confidence. I was brash, full of textbook knowledge, and ready to tackle any medical challenge that came my way. Little did I know that one of my most memorable patients would teach me more about humility and the essence of patient care than any textbook ever could.
I met Mrs. S, a 99-year-old woman with a history of an irregular heartbeat, under dire circumstances. She was an Indian indentured immigrant who had spent most of her life toiling in the cane fields. Despite her age and frailty, there was a steely determination in her eyes.
She had developed an arterial clot in her leg but flatly refused hospitalization or surgery. “I’m too old for that,” she said firmly, her voice a mix of resignation and resolve. My initial reaction was one of frustration. I saw a clear medical solution to her problem, but she was unwilling to take it.
Her home was next to my office. Over the next few days, I focused on managing her pain and tried to convince her to be admitted. Despite my best efforts, she remained resolute. Her leg, deprived of proper blood flow, began to turn black and necrotic.
Her living conditions were humble, a stark contrast to the sterile, high-tech environment of my office. As I entered, the familiar scent of mangoes filled the air, mingling oddly with the sharp odour of gangrene.
Mrs. S lay on a simple bed, her leg now a mottled, lifeless mass. Despite her condition, she greeted me with a weak smile. “Doctor, you came,” she whispered, her voice barely audible over the hum of a nearby fan. I sat by her side. We talked. Not about her medical condition, but about her life, her struggles, and her memories. She told me stories of her youth and the back-breaking work in the cane fields. Her husband was an excellent man but died at the age of 50 from a heart attack. Her only daughter was battling cancer at hospital.
As I was about to leave, she reached under her pillow and pulled out a small, worn purse. “I want to pay you,” she insisted, her hands trembling as she counted out a few crumpled bills. I protested, telling her it was unnecessary, but she was adamant. “You mad or what? You are my doctor!” It was a matter of pride and dignity for her.
As I stood to leave, she held my hand and whispered, “We finally have a good doctor here.” Those words hit me harder than any criticism or praise I had received during my training. In that moment, I understood the true essence of being a doctor. It wasn’t just about diagnosing and treating -- it was about listening, understanding, and connecting with patients.
Before I left, a neighbour handed me a basket of mangoes. “This is from her tree. She asked me to pick these for you, doctor,” she said, her eyes twinkling with gratitude.
Mrs. S passed away a few days later. Her death left a void, but her words and the lessons she imparted stayed with me. She taught me that medical knowledge, while important, is just one part of the equation. Compassion, empathy, and respect for a patient’s wishes are equally vital.
The village came together for her funeral, a solemn yet poignant ceremony held by the river. I attended, standing among her family and friends as they paid their respects. The air was thick with the scent of incense and the sound of prayers. Her body, wrapped in a simple white cloth, was placed on a traditional funeral pyre. As the flames began to consume the wood, casting flickering shadows, I felt a sense of closure. This was not just a farewell to a patient but to a teacher who had imparted invaluable lessons on the human spirit and the true art of healing.
Study Will Research Alzheimer’s In People With Down Syndrome
An institute at UNT Health Fort Worth is participating in a national study working to understand why adults with Down syndrome are more likely to develop Alzheimer’s disease.
The study, the Alzheimer’s Biomarker Consortium-Down Syndrome, is supported by the National Institutes of Health, and is working to identify biological markers of Down syndrome.
UNT Health’s Institute for Translational Research is one of 11 sites participating in the study, and the first site in Texas, said Melissa Petersen, Ph.D., associate professor and clinical core scientific lead at the Institute. Across the country, the study has recruited 600 people to participate. About 45 people will participate with UNT Health.
Alzheimer’s disease is far more common in people with Down syndrome than in the neurotypical population. According to published research, the lifetime incidence of Alzheimer’s disease in adults with Down syndrome is 90%.
Petersen’s research to date has focused on looking for markers in the blood that can help predict Alzheimer’s disease. The new study will work on understanding the blood biomarkers of Alzheimer’s disease in people with Down syndrome.
“I think that through this work and what we’re able to learn that we can actually make a difference in the lives of adults with Down syndrome,” Petersen said.
For participants, the study may include physical exams, neurological tests, brain scans, and assessments to measure cognition, memory and movement, according to the study’s webpage.
About $6.8 million has been awarded to UNT Health for the study.
Group Homes Owned By Private Equity Could Face Added Scrutiny
By the time Illinois notified group home provider Broadstep two years ago that it was revoking its license, the list of problems documented by state investigators spanned nearly seven pages.
Expired medications. Incomplete background checks. “Critical incidents,” which may have included medical emergencies and other events that spurred 911 calls, not reported properly. And some employees without proof of high school diplomas, GEDs or required literacy tests.
The list went on.
Broadstep was one of the larger group home providers in Illinois for people with intellectual and developmental disabilities, according to a 2024 state audit, though a small number of providers had many more sites. And its collapse became a flashpoint in a broader debate over its onetime owner — a private equity firm — and the growing role such owners have in an industry the audit said in 2023 served more than 3,100 licensed sites and about 11,000 people with developmental disabilities statewide.
Earlier this year, that debate produced legislation now on Gov. JB Pritzker’s desk requiring greater transparency from investment firms that buy group homes for people with disabilities.
The legislation
The bill, which passed the General Assembly this spring with broad bipartisan support, requires facilities for people with intellectual and developmental disabilities to report to the state when they are purchased by an asset management company — such as a private equity fund, hedge fund or venture capital firm.
After a community integrated living arrangement — commonly known as a group home or CILA — or other licensed facility for people with disabilities is purchased by such a firm, it would have to regularly report financial activity, including assets, liabilities and staffing levels, to the state Health Facilities and Services Review Board.
They would also have to notify the state before selling off parts of the business and certify that the sale would not leave the facility financially distressed, a provision the American Federation of State, County and Municipal Employees Council 31 has branded a first-in-the-nation “anti-looting” measure.
Entities that fail to report would face fines, and the board would notify the state agency that issues the facility’s license.
Democratic state Sen. Javier Cervantes, one of the bill’s sponsors, said the goal is oversight, not exclusion.
“So I think these are more of — ways to create guardrails. I think one facility dealing with this for me is enough, right? I think that’s one too many,” he said. “I don’t have a problem with them coming in here and investing, but as long as they’re — they don’t do any looting, they don’t do things that will run down the facility.”
Democratic state Rep. Laura Faver Dias of Grayslake, another sponsor, said the union’s testimony about conditions at Broadstep-owned homes shaped the bill’s priorities.
“Yes, there are business entities operating in this space, but … my top priority is the human care,” she said. “We know that private equity has a vested interest in profit, and the state of Illinois — I think it’s pretty broad consensus that we have, our motive in this space, is making sure that our most vulnerable residents are taken care of in a way that they deserve.”
The bill also addresses a gap regulators didn’t anticipate, said Jacob Meeks, AFSCME Council 31’s policy director.
“When the state’s regulations were developed, they didn’t contemplate asset management companies and private equity firms having an interest in disability services,” Meeks said.
The Broadstep case and Bain
Broadstep, which operated homes for people with intellectual and developmental disabilities in Freeport, Springfield, Marengo, Naperville and elsewhere, drew scrutiny after Bain Capital became involved in the company around 2020, according to AFSCME Council 31 and the Private Equity Stakeholder Project, a watchdog research nonprofit critical of the industry.
At its peak under Bain’s investment, Broadstep housed 150 to 200 people across homes with a maximum capacity of eight residents each, according to AFSCME estimates. The homes previously operated under the names Willowglen and Bethesda, according to a 2023 state Department of Healthcare and Family Services report.
An August 2024 report from the state Office of the Auditor General found Broadstep “appears to have violated both State law and State rule” during investigations from July 2020 to June 2023.
During that period, the company received $23.6 million for services — the highest funding total among the 25 providers included in the report. The Illinois Department of Human Services failed to sanction Broadstep even as the company “repeatedly refused to cooperate” with investigations into allegations against it, the report said.
IDHS spokesperson Summer Griffith said the department is acting on the auditor’s recommendations.
“In partnership with the IDHS Inspector General (OIG), IDHS has strengthened tracking, coordination, and follow-up when providers fail to cooperate with investigations, and has clarified the policy for addressing provider noncompliance,” Griffith said.
Illinois notified Broadstep it was revoking its license in 2024 after the company failed to correct the violations despite repeated warnings, according to the revocation notice obtained through a Freedom of Information Act request, following its publication by the Private Equity Stakeholder Project.
“Despite multiple plans of correction and corrective action plans and personalized assistance from (the Division of Developmental Disabilities), the deficiencies continue. Every effort has been made to with Broadstep (sic) to not only address these deficiencies but to implement a system to maintain compliance,” the letter said.
Questions about who owns Broadstep remain unresolved even now, in the absence of mandatory reporting.
Neither Broadstep nor its attorney, Matthew Hughes, responded to inquiries about the new legislation or the license revocation.
Bain spokesperson Eddie de Sciora said in an email that Bain had not been “the majority owner of Broadstep since October 2023, so the firm was not involved operationally when the license was revoked for the IL facility in 2024.” De Sciora did not respond to follow-up questions about who controlled Broadstep after 2023, and declined to comment on the violations dated before that time.
Bain listed Broadstep as an “active” investment on its website into 2025, according to a screenshot in the web archive, though de Sciora said the website listing reflected that Bain Capital Double Impact, one of its investing arms, “retained a small residual equity position” after October 2023.
“(T)he 2024 Illinois revocation occurred after that operational control had ended,” he said in an email.
Griffith didn’t respond to questions about the specifics of Broadstep losing its license or the new legislation.
The industry responds
The scale of private equity ownership among Illinois group home providers remains largely unknown — a gap the new law is designed to close.
About half a dozen intellectual and developmental disability service providers associated with private equity firms have locations in Illinois, according to a 2025 report from the Private Equity Stakeholder Project.
Cervantes said it appears Bain is out of the picture in Illinois and that asset management firms don’t currently operate at large scale in the state’s disability care system.
Private Equity Stakeholder Project spokesperson Matt Parr said the state’s experience still carries national weight.
“Illinois was a very unfortunate case study in what was happening with these private equity-owned (intellectual and developmental disability) providers,” he said.
Community-based provider group Illinois Association of Rehabilitation Facilities President and CEO Josh Evans, whose organization neither supported nor opposed the new bill during this year’s legislative session, questioned the extent of private equity involvement among the hundreds of licensed providers in Illinois. The organizations Evans works with are “by and large” nonprofit, he said, and he could not say how many providers were owned by private equity in Illinois overall.
Overall, those in the intellectual and developmental disabilities space “run a tight ship,” Evans said, as they’re subject to audits, quality measures and reports to state government. His organization is more focused on wages and other issues than private equity, he said.
If the department gets to the point of revoking a license, he said, “there are serious issues with that organization.”
One worker’s story
Rori Schrader, 54, began working at the Freeport-area homes — then known as Willowglen — in 2013, handling medication administration, bathing, feeding and other daily care. After Bain’s investment around 2020, staffing was cut, she said, and turnover accelerated as patient-to-staff ratios grew unmanageable.
“You could just tell that once we were bought by this company, that there wasn’t as much care for the individuals or the staff,” said Schrader, a former direct support professional, administrative assistant and AFSCME Council 31 member at the facility, which closed last year.
Schrader said she saw maintenance issues go unaddressed starting around 2021, including holes in walls left by a patient around 2023, and she said administrative positions were cut while management became difficult to reach.
After the facility closed, she said she worried about how longer-term residents would adjust to new placements.
Stacey Aschemann, vice president at Equip for Equality, which advocates on behalf of people with disabilities, said the new law provides a step toward transparency.
“Service models that focus on maximizing profits must not be part of Illinois’ support system for people with developmental disabilities,” Aschemann said in an email.
First Canadian ALS patient receives Neuralink brain-computer implant
Police sergeant Lee Marten became the first patient to receive Neuralink’s BCI using an experimental surgical robot that placed the electrode threads directly through the dura.
A police sergeant from Vancouver has become the first Canadian ALS patient to receive Elon Musk's Neuralink brain-computer implant and the first to undergo neurosurgery with a new experimental surgical robot that inserted the device's strands through the brain's outer protective layer, the dura.
Neuralink's brain-computer interface (BCI) uses a small, virtually invisible implant placed in the region of the brain responsible for planning movements. The N1 implant is engineered to decode neural activity, allowing users to control a computer or smartphone simply by intending to move.
Sergeant Lee Marten, who is on leave from the Vancouver Police Department, underwent surgery at the University Health Network's Toronto Western Hospital in May.
ALS left Marten with enough mobility to operate his electric wheelchair with his hands. Following the implant, he has been able to control his phone or laptop using his thoughts.
Two other Canadians have received Neuralink’s BCI, both of whom are quadriplegic. Marten is the 26th patient in the world to receive a Neuralink implant.
The Larger Trend
Earlier this year, Neuralink announced its next-generation robot that can perform key steps during the BCI implantation. The company’s BCI comprises thin, flexible electrodes (thinner than a human hair) that are close to impossible for a surgeon to implant one by one.
“After the surgeon has created the opening in the skull and lined up the brain to the robot, the robot's role is to grab threads off of the implant and insert them into the brain,” Danish Hussain, head of surgery mechanical engineering at Neuralink, said in a video.
In 2024, Neuralink announced that it had received approval from Health Canada to conduct a four-year clinical trial, dubbed the Canadian Precise Robotically Implanted Brain-Computer Interface (CAN-PRIME) study, to evaluate its N1 brain implant and R1 robot at UHN Toronto Western Hospital.
The trial evaluates the N1 and R1 robot in patients with tetraparesis or tetraplegia. It is targeting Canadian residents with cervical spinal cord injury or the neurological disease ALS who also have a life expectancy of at least.
Misaligned Expectations: Motivations of Medically Underserved People to Enroll in the All of Us Research Program
It is important to know what motivates people, especially from groups underrepresented in biomedical research, to accept or decline participation in research studies. With this information, engagement strategies, incentives to participate, and benefits of participation can be aligned with what potential research participants value and expect from participating in research. Our project sought to identify what motivated people recruited at a Federally Qualified Health Center (FQHC) to enroll, or not, in the All of Us Research Program (AoU). Qualitative interviews revealed that the most common motivator was the prospect of learning information about their health, especially genetic information that might indicate inherited disease or disease risk, and opportunities for disease prevention. However, our research also revealed that the low-income, medically underserved people typically served by FQHCs face myriad financial, social, and political barriers to reaping the potential health benefits of knowing genetic health information. There is currently a misalignment between what motivates actual and potential research participants to enroll in AoU and the ability of low-income, medically underserved people to use genetic research results to benefit their health. Whether or not learning genetic research results leads to improved health outcomes should be approached as a question rather than an assumption. Embedding research within an unequal society remains a barrier to aligning research participants’ motivations with the benefits that participation in research can deliver.
For more information please read original article.
Craniofacial Acceptance Month: Embracing Differences And Raising Awareness
Craniofacial Acceptance Month is observed globally throughout September (distinct from July’s clinical and prevention-focused National Cleft and Craniofacial Awareness Month). Founded by organizations like the Children’s Craniofacial Association (CCA), September emphasizes acceptance, social inclusion, reducing stigma, and supporting affected individuals and their families.
Medical & Clinical Context
Craniofacial conditions affect the head, face, and neck due to genetic mutations, environmental factors, or a combination of both. Early diagnosis (prenatal ultrasound or postnatal imaging) and long-term multidisciplinary care—involving reconstructive surgery, speech therapy, orthodontics, and psychology—are fundamental to management.
Cleft Lip and/or Palate: Affects ~1 in 700 live births globally (1 in 1,600 in the U.S.).
Craniosynostosis: Affects ~1 in 2,500 births in the U.S.
Hemifacial Microsomia: Affects ~1 in 3,500 to 5,600 births.
Treacher Collins Syndrome: A genetic condition affecting facial bone and tissue development.
Comorbidity & Mental Health Findings
Recent research (including 2025 Penn State / TriNetX data) highlights significant co-occurring neurodevelopmental and psychological challenges:
Mental Health: Paediatric cleft patients face a 2.32x to 5.47x higher risk for depression, anxiety, ADHD, and disruptive disorders compared to controls.
Academic Impact: Approximately 30–40% of cleft patients experience learning disabilities or academic challenges requiring educational accommodations (IEP or 504 plans).
Neurodevelopmental Link: Research notes elevated co-occurrence of Autism Spectrum Disorder (ASD) and ADHD alongside craniofacial conditions.
Social Challenges & Actionable Support
Individuals with visible facial differences frequently encounter bullying, appearance-related distress, social anxiety, and bias in school or workplace environments.
Educational Settings: Advocating for anti-bullying initiatives, assistive technology, and continuous progress evaluations.
Advocacy & Engagement: Promoting inclusion by sharing personal stories, hosting community awareness events, volunteering with support organizations (e.g., CCA Kids, myFace, Smile Train, Face Equality International), and encouraging positive representation in media.
Having multiple falls nearly doubles risk of dementia, study finds
A recent study found that middle-aged and older adults who have had falls—especially multiple falls—may face a higher risk of developing dementia later. Researchers reviewed seven studies involving nearly 2.9 million people age 40 and older. Adults with a history of falls had an estimated future dementia incidence of about 11.6%, rising to 12.3% among those age 60 and older. A single fall was linked to a 120% higher future dementia risk, while multiple falls were linked to a 174% higher risk. The authors suggest recurrent falls may be an important warning sign for clinicians to monitor cognitive decline earlier.
Oral health and diabetes: a systematic review and meta-analysis
Abstract
Background: Diabetes is a major public health challenge, affecting nearly 828 million people worldwide. Similarly, oral diseases such as dental caries, periodontal diseases, and oral cancers are highly prevalent, affecting approximately 3·7 billion individuals globally. Diabetes and oral diseases share common risk factors and studies suggest a potential relationship in which poor management of one potentially exacerbates the other. However, the direction, magnitude, and consistency of these associations remain unclear, and oral health remains largely overlooked in diabetes prevention and management strategies. The aim of this study is to systematically assess and synthesise the evidence on the longitudinal association between diabetes and oral diseases.
Methods: We conducted a systematic review and meta-analysis reported in accordance with PRISMA guidelines. We searched four electronic databases (Embase, PubMed, Web of Science, and LILACS) and grey literature from database inception to Oct 27, 2025. Eligible studies included longitudinal prospective studies examining associations between diabetes (type 1, type 2, or gestational) and core WHO oral diseases (periodontitis, dental caries, tooth loss or edentulism [complete tooth loss], and oral cancer). Random-effects meta-analyses were performed using the restricted maximum likelihood method to estimate pooled effect sizes with 95% CIs of hazard ratios (HRs) and risk ratio (RR). Methodological quality was assessed using the Newcastle-Ottawa Scale for cohort studies.
Findings: We screened 45 477 records and included 28 longitudinal studies from 16 countries, encompassing over 300 000 participants. Most studies were population-based and of moderate-to-high methodological quality. A bidirectional temporal association in incidence patterns was observed between diabetes and periodontitis. Individuals with periodontitis at baseline showed a 19-26% higher occurrence of newly incident type 2 diabetes during follow-up, and baseline diabetes status was associated with a higher newly incident cases of periodontitis, with pooled RRs indicating modest differences between groups. Diabetes was also associated with higher rates of tooth loss over time (HR 1·11-1·16). Quantitative pooling was not feasible for edentulism outcomes; however, individuals who were edentulous at baseline showed a higher occurrence of newly incident type 2 diabetes (RR 1·30). Evidence regarding dental caries was scarce and heterogeneous, precluding meta-analysis. No longitudinal evidence was identified for oral cancer.
Interpretation: Findings from this longitudinal synthesis indicate associations between diabetes and oral diseases in both directions; however, the strength and consistency of evidence are asymmetric. Evidence suggests that people with periodontitis and edentulism are more likely to be diagnosed with type 2 diabetes than people without periodontitis and edentulism in the future. People with diabetes are more likely to be diagnosed with periodontitis than people without diabetes, but with less consistent evidence. Our findings support integrating oral health within interdisciplinary diabetes prevention and management strategies.
Funding: WHO Oral Health Programme.
Copyright © 2026 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY-NC-ND 4.0 license. Published by Elsevier Ltd.. All rights reserved.
He Died at a School for Disabled People. Decades Later, His Brother Sought Answers.
ohn Scott was rarely spoken of in his family after he was placed in the Walter E. Fernald State School in Massachusetts as an infant. Decades after John died there at age 17, his youngest brother, David Scott, began searching for answers about the brother he had barely known.
His search led him to an unmarked cemetery near the former institution, a local historian working to identify those buried there, and eventually people who remembered John as a bright, cheerful student. The story explores one family's history alongside the broader legacy of institutions for people with intellectual and developmental disabilities.
Inside a ‘Hell on Earth’ in Oklahoma
The Greer Center was supposed to be a refuge for people with developmental disabilities. But accounts from inside the secretive facility paint a starkly different picture, depicting a place where helpless patients faced beatings, waterboarding and constant fear.
Two summers ago, Detective Frank Bruno was at the police station in Enid, Okla., when a woman walked in with a story to tell.
In Enid, a city of 50,000 people dotted by Depression-era grain terminals, Mr. Bruno typically worked on robberies and financial crimes. But in this case, the woman, Apera Tobiason, was a treatment specialist at the Robert M. Greer Center, an institution for people with developmental disabilities that sat on a sprawling campus on the main road into town.
She was upset. She told Mr. Bruno that she had started working at Greer the previous summer, writing treatment plans for residents who had the mental capacity of young children. At first, she had been excited. Her brother has a disability, so the work felt personal. But she quickly realized that Greer was no place she would want her brother to be.
In early 2023, she had encountered three residents who had black eyes or head injuries and grew suspicious when they were all explained away as accidental. The problem, she said, was that many of her fellow staff members were barely trained and regarded residents as nuisances requiring discipline.
But her reports to her superiors, which she was soon filing weekly, if not daily, seemed to go nowhere. She told the police that little of what she saw was reported to the state, as required by law, and often only after injuries had healed.
After she raised her concerns, Ms. Tobiason said, a woman she worked with called her a snitch, and deliberately bumped her shoulder in a hallway. She said she was made to feel by her co-workers that her empathy for the residents was the problem.
“They absolutely hated that I was nice to them,” she said.
She had sought a meeting with Mr. Bruno after receiving an alarming phone call from another police officer two days earlier. He told her that fliers with her photo had been found all over town, advertising her for sex work. “Item for sale,” they said. “Want your Popsicle blown?” They included tear-off slips with her phone number. She went looking, and found them on utility poles, in bathrooms, at public parks and at a vocational training site used by Greer.
Her supervisor declined to intervene, saying it wasn’t clearly a company issue. Ms. Tobiason could be heard crying during the conversation, which she secretly recorded. “You have to get your emotion under control,” her supervisor said.
“I have people with my photo, and my number, calling me late at night,” she protested.
He later chided her for “not taking any kind of responsibility for your part in this.”
Mr. Bruno, 30, who had joined the police force after serving as an Army medic, had been looking for a case where he could have an impact, do some good. He thought he might have found one.
“These are probably some of the most vulnerable people in this state, and they’re up there by themselves,” he said in an interview later. “Somebody needs to actually care about these people and do something right by them.”
Reports of abuse and neglect have long been endemic in the care of those with developmental disabilities. For decades, Liberty Healthcare, a private company with contracts in more than a dozen states, has pitched itself as an alternative for disabled adult services that typically are provided directly by states or charities. But in Oklahoma, it has left behind a trail of litigation and outrage, highlighting the potential problems with outsourcing care of a largely powerless population to a profit-making company operating with limited oversight.
While Greer has received widespread attention in Oklahoma, The New York Times interviewed two key insiders for the first time: Ms. Tobiason, as well as an elusive former resident who provided a rare firsthand account of what happened and emerged as a critical potential witness who could open the door to criminal prosecutions.
This article is also based on dozens of accounts from families, regulators, the police and Liberty employees, as well as police reports, court affidavits and personnel records. Photographs and medical records documented years of injuries, as did decades of Greer’s own internal abuse reports, along with recordings of interviews with victims and suspects.
What they showed was how difficult it is to hold the perpetrators of such abuse accountable. Criminal charges were brought against eight Greer employees based on the investigation that Mr. Bruno would undertake. But the cases were dropped before they went to trial. Even after a new contractor took over this year, some managers who failed to heed abuse reports kept their jobs or were promoted.
Together, these accounts told a story of a nightmare that went on behind locked doors for years, its victims often unable to recognize the depravity of what was happening to them, let alone sound an alarm.
“It’s just a tragedy that should never happen,” Gov. Kevin Stitt of Oklahoma, a Republican, said in an interview. “Whatever control that company got in place, it didn’t work.”
‘Is That a No-No?’
During a half-century-long push to deinstitutionalize care for people with mental illness and developmental disabilities, state hospitals that had acted as little more than warehouses were largely emptied out. After federal litigation in the 1980s pushed Oklahoma toward more community-based care, the state contracted work to Liberty, a company that provides a variety of services to support challenging populations.
Liberty’s operations have been the subject of controversy before. A 2007 Times report revealed failures at a Liberty-run sex offender treatment center in Florida, which one mental health counselor called “a cesspool of despair and depression and drug abuse.” In California, State Senator Brian Jones, the Republican minority leader, complained in 2023 that Liberty “sneaks into unsuspecting communities” to “secretly release dangerous” predators.
Company officials declined to answer most questions about Greer, citing continuing litigation. But in court filings, Liberty denied many allegations of abuse and inadequate oversight, contending that it “performed within accepted industry standards.” It fired several Greer employees accused of misconduct and agreed to some corrective actions, including instituting morning meetings to review what happened the previous evening.
As Mr. Bruno began investigating, he learned that state regulators had already cataloged a spate of serious problems, including accusations of beatings by staff members. One resident was blinded in both eyes. Another suffered leg injuries that a doctor likened to those seen in a car crash. Mr. Bruno noticed that injuries were typically reported as accidental. It “got worse and worse and worse with the more that I found out,” he said.
In the months that followed, families of more than 20 residents, including one who died at Greer last year, hired lawyers who gathered evidence backing up abuse claims leveled by Ms. Tobiason and other whistle-blowers.
The lawyers had dozens of photos showing residents with black eyes or covered with large patches of deep purple bruising. Some residents claimed that they had been sexually assaulted, according to state records.
Many accounts focused on a cadre of men on the night shift, several in their early 20s, whom residents accused of routinely engaging in abusive behavior. The residents described enduring “choke-and-revive” games that appeared to be no more than an effort by the night crew to pass time.
But the residents often had trouble understanding what was happening. One told a specialist brought in by Mr. Bruno that a caregiver “tried to choke me with a towel” and in a videotaped interview described getting his head dipped in a toilet.
“Is that a no-no?” he had asked.
As Mr. Bruno widened his inquiry, it appeared that plenty of people had tried to raise alarms. A former Greer nurse filed a lawsuit against Liberty in which she said the facility had become a “hell on earth for many of its residents.”
The Oklahoma Disability Law Center, a federally funded nonprofit, filed formal complaints in May 2023 with two state agencies. RoseAnn Duplan, a policy specialist with the center, said in an interview that her group saw “almost identical bruising in multiple different people.” Joy Turner, the group’s investigations director, added that injuries were routinely “coming from the same unit, with the same staff. I mean, how do you not recognize that?”
The state took little immediate action. The next year, a state-funded report by a consulting firm cited “a series of seriously abusive situations perpetrated by residential staff,” and also found that ongoing management problems were largely allowed to continue.
One of the first things Mr. Bruno did was help track down closed-circuit camera footage where the fliers had been hung. Four of Ms. Tobiason’s co-workers, all women, could be seen taking part.
She went to court and was granted protection orders against the women. But with fliers already seeded across the community, police officers worried about her safety; she took a leave from work and left town, giving her ex-husband partial custody of her children.
Mr. Bruno began digging into abuse episodes detailed by Ms. Tobiason. One common thread was Jonathan Martinez, a care provider hired in 2021 at the age of 19. He was named in abuse or misconduct allegations involving at least seven residents.
He had already come to the Enid police’s attention in a referral in May 2023 from state regulators, after they substantiated allegations that Mr. Martinez had punched a female resident in the face who wasn’t sitting down in a van. An internal Greer report said she had poked herself in the eye.
Another case was that of Jaymee Muns, 28, a nonverbal autistic woman with a history of physical outbursts, according to her mother, Shawna Moore. At Greer, she appeared in 112 injury reports from May 2022 to May 2023, documents show, culminating in two detached retinas that went largely unexplained. She lost sight in both eyes.
Ms. Moore said her daughter had been a prolific creator of pastel drawings, bursting with color and shape. But her injuries changed all that.
“She’s no longer an artist because she doesn’t have eyes,” Ms. Moore said, adding that her daughter is now heavily medicated. “Her life is gone now. She sits in a chair and that’s what she does.”
That same year Mr. Bruno asked Liberty’s internal investigator, responsible for examining reports of abuse and other problems, why her caseload increased 50 percent from a year earlier. He was concerned by her dismissive response. She told him that she normally started investigations believing “the client is lying about what happened,” he said later, describing the conversation.
Another Greer employee, who asked that his name not be published because of threats he had received after cooperating with the police, tried to explain the challenges of working at Greer to Mr. Bruno. Residents typically have mental illnesses as well as developmental disabilities and often end up there when their families are unable to control them.
“Some of them get real violent,” the worker told Mr. Bruno in a videotaped interview. “And you’ve got to take them down. You try to do it to the best of your ability without you getting hurt and without them getting hurt.”
The man said a culture of violence had set in.
“A lot of people — what shocked me — were bragging about that,” he said. “That’s just their mentality, you got to beat them up.” He told the detective that some Liberty employees came to work “itching for a fight.”
By early August 2023, Mr. Martinez was the subject of several investigations. (Mr. Martinez and his lawyer declined to discuss the claims.) The state Office of Client Advocacy, which monitors Greer, put in place a safety plan barring Mr. Martinez from working with residents while the inquiries were underway. But Liberty put him back to work weeks later, saying that the company’s own internal inquiry had cleared him, according to police reports.
Mr. Bruno also noted in his case files that reports of abuse became more frequent after Ed Webster, 53, was promoted to night shift supervisor on the facility’s west wing. A Liberty employee and a resident both told Mr. Bruno that Mr. Webster had sometimes acted as a lookout when abuse was taking place, once warning others when a nurse was approaching. (In a text, Mr. Webster said that “none of that is true,” adding that he was “trying to forget and move on.”)
In September 2023, Mr. Martinez was fired.
By then, Mr. Bruno was talking to the office of the district attorney, Tommy Humphries, about bringing criminal charges. Mr. Humphries was skeptical, and in interviews, both he and Mr. Bruno highlighted a common impediment in such cases.
“Oftentimes your victims cannot tell you what happened,” Mr. Bruno said, adding that one resident in his 20s who might have been a witness “has the mentality of a 2- or 3-year-old.”
But a victim would soon emerge who was not like the others.
‘I Used to Be an Outlaw’
Richard Lott arrived at Greer in the summer of 2023, a few weeks after Ms. Tobiason had gone to see Mr. Bruno.
Mr. Lott was not supposed to be at Greer. He was not developmentally disabled, but he had been in and out of prison, fighting drug addiction for years. When he once again faced probable prison time after leading police officers on a chase, he decided to “play dumb,” he later told Mr. Bruno, leading the state to declare him mentally incompetent. He ended up at Greer.
For a few weeks, it did seem like a better option than prison. But then, he said, he started hearing strange noises outside his room in the west wing.
There was paper covering the window on his door, blocking his view. But he could hear disturbing sounds: The squeaking of sneakers, almost like a basketball game was being played. What sounded like the thudding of fists against flesh. Moaning and pleading.
He started turning up the television in his room. “I couldn’t listen to it no more,” he later said. “It was that bad. It was just, like, breaking my heart.”
Eventually, Mr. Lott scraped a small hole in the window covering and was stunned by what he saw going on in the common area. A group of young male employees, night shift regulars, were holding down a resident and beating him. The same thing happened again a few days later, and on many other nights.
“I’d be like, man, they’re going to kill this person,” he said in an interview. He would also see staff members routinely bribing one resident with fast food to beat others. “It was like chicken fighting,” he said, adding, “They would take bets.”
Like Ms. Tobiason, he tried alerting Greer supervisors, but made little headway. Then he urged a sympathetic caregiver to pull up the shirt of a resident who had been beaten. The caregiver, alarmed by bruising he saw, informed a supervisor who knew about Mr. Bruno’s investigation and told the detective.
On Oct. 18, 2023, Mr. Bruno approached Mr. Lott at an off-site recycling center that employed Greer residents.
“I’m not big on snitching,” Mr. Lott said as they began talking in a small conference room. “You know, I used to be an outlaw.”
But he was ready to talk. Mr. Lott recounted to Mr. Bruno what he had heard and seen: Beatings. Waterboarding. Victims pleading for mercy. He said he was especially worried about a Black resident with a friendly disposition whom he called his “buddy.” This was a curious development. Mr. Lott had once been a member of the Aryan Brotherhood while in prison and still has a swastika on his left hand, but said he had renounced racism. “You know, I’m a Christian,” he told Mr. Bruno.
His new friend was a particular target of the west wing night crew. One night, Mr. Lott said, he saw his friend being held down in a chair, with towels wrapped around his neck.
“They’d take Sonic cups and pour it on his face,” he said, “make him pass out and beat him awake.” (A similar account appears in a lawsuit brought on behalf of another former Greer resident, Matthew Owens, alleging that he was “strangled” with bedsheets or wet towels until unconscious, then struck “repeatedly until he woke up.”)
Mr. Lott said “it was a horrible sound” when his friend was jarred back awake during the beatings.
“I’m thinking, man, I need to tell somebody this, but I don’t want to be a snitch,” he said. “But I actually talked to my mama about it and she was like, ‘Richard, if that’s going on, ain’t nobody going to say nothing to you about snitching.’”
By mid-November 2023, Mr. Bruno had convinced the district attorney, and arrests began, with Mr. Martinez among the first, charged with felony abuse by a caretaker and conspiracy. A week later, Mr. Webster and two other employees were charged.
Days later, Mr. Bruno and a state investigator sat down with Hugh Sage, Liberty’s top Oklahoma executive, in a conversation later recounted in an interview and a police report. Mr. Sage told them that he had not seen any injuries to residents. Mr. Bruno, exasperated, pulled out several of what he called “black and blue” photos showing injuries.
“I was like, you really want to tell me I made this up?” Mr. Bruno recalled. In a report, he wrote that “over the course of the interview, it became more and more obvious” that the administrator “had little to no idea what was actually going on.”
Mr. Sage stepped down a couple of weeks later and did not respond to requests for comment. After arrests began, Liberty officials promised to “fully cooperate,” releasing a statement saying they were “deeply disturbed by the reports of abuse and consider such behavior to be wholly inappropriate.”
For Mr. Bruno and family members who had pushed to get answers, it seemed as if a reckoning was at hand.
But their optimism was short-lived. In January 2024, five employees who had been suspended for abuse allegations, but were not among those criminally charged, resurfaced at Greer. Under the direction of supervisors from Liberty’s corporate office in Pennsylvania, the employees were told to shred a dozen large trash cans worth of documents, according to court records.
Lawyers for many residents with pending lawsuits got a temporary restraining order halting the shredding, but three days had passed. The company characterized it as routine document destruction and in a statement “categorically denied” any effort “to destroy evidence.” But a few days later, during a civil court hearing, Liberty’s human resources manager in Oklahoma at the time, Stacie Caywood, testified that someone had been sent to a local store to buy five paper shredders to carry out the work.
“You sent somebody to get five shredders during the middle of multiple criminal and civil investigations?” Ross Leonoudakis, a lawyer for one of the plaintiffs, asked during the hearing.
“Yes, sir,” Ms. Caywood replied.
The same week the shredding occurred, the State Department of Health issued a report accusing Greer of failing to investigate allegations of physical or sexual abuse involving six residents.
Mr. Bruno hoped that his own case would finally curtail such episodes.
But then problems emerged. By the summer of 2024, Mr. Lott, the only resident eyewitness without a mental disability, had been released from Greer and left town. When he couldn’t be found, Mr. Humphries, the district attorney, moved to drop all criminal charges.
Mr. Lott resurfaced in September in a jail near the Arkansas border, detained on an old burglary warrant, and Mr. Bruno rushed over to talk to him. This time, Mr. Lott added a new element to his account. He said that he, too, had been a victim, but had previously been too embarrassed to discuss it.
He told Mr. Bruno that the night crew at one point had covered his face with a towel, turned the shower on and streamed water over his face.
“You’d feel like you’re drowning, but you really wasn’t,” he told The Times. “I never even knew the word until I explained it to the detectives, and they said, that’s called ‘waterboarding.’” He also claimed that he had been sexually abused by Greer employees on several occasions.
Mr. Bruno believed Mr. Lott was telling the truth, and pressed to refile charges.
But Mr. Humphries was still not convinced.
“Obviously there are some inappropriate things that have gone on,” he said later in an interview. But he said he felt that Mr. Lott had changed his story, and he was no longer certain that his testimony would stand up in court.
In May, Mr. Martinez was arrested again — this time on drug trafficking and gun charges. According to court filings, he was found with 44 grams of cocaine, mostly in a safe, and an AR-15 rifle. He pleaded not guilty, and both he and his lawyer declined to comment on the new case, which is pending.
A Change in Management
A road winds past an open gate bearing a sign for the Robert M. Greer Center.
The Robert M. Greer Center sits on a sprawling campus on the main road into Enid.
The controversy over Greer generated months of headlines in local news outlets like The Frontier and The Oklahoman, which reported last year that the Department of Human Services was seeking to continue the state’s contract with Liberty.
The department said in recent statements that it had considered keeping Liberty amid “intensive safety remediation efforts,” and pointed to several actions the state took after the scandal became public, including putting monitors inside Greer and installing cameras. Liberty, in court filings, defended its management, saying that none of its actions were “unlawful, reckless, willful” or “malicious,” and in a brief statement to The Times said its local staff had included “experienced clinical and operations managers.”
The plan to retain Liberty drew immediate pushback.
“I told them they are not renewing that contract,” said Senator Paul Rosino, a Republican who chairs the Legislature’s Health and Human Services Committee. “Why in the world would we renew a contract,” he added, “for people who tortured and abused people?”
The state ultimately terminated the contract, a move that Governor Stitt said was made “as soon as we felt like we legally could,” adding that the situation was “just an absolute tragedy.”
Liberty continues to operate elsewhere, however. In its home base, Pennsylvania, it has contracted with the state since 2015 to oversee investigations of abuse of people with developmental disabilities. The state said it recently reviewed completed cases “to ensure proper handling.”
Greer was taken over in February by Respectful Partners, an Oklahoma company that operates group homes. Concerns linger. Some people currently working at Greer expressed unease to The Times that the new company had retained or promoted several former Liberty officials, including Ms. Tobiason’s old supervisor.
Ms. Tobiason, who has filed her own lawsuit against Liberty, said she found it hard to believe that there were so few repercussions.
“I feel like the D.A. not prosecuting just makes people more scared to stand up and speak out,” she said.
Mr. Lott has also joined litigation against Liberty, but wonders why he talked to the police. “I kind of feel like I wasted my time,” he said.
Mr. Bruno is still on the job; he recently assisted after a fatal shooting at a local hospital. The outcome of the Greer case left him “frustrated and disappointed,” but he said he didn’t regret pursuing it.
“Somebody has to tell people what happened up there,” he said.
Guidelines for Assessment and Intervention with Persons with Disabilities
The Guidelines for Assessment and Intervention with Persons with Disabilities were adopted by the APA Council of Representatives in February 2022 and replace the original Guidelines for Assessment of and Intervention with Persons with Disabilities from 2011.
Key updates include heightened diversity, equity, and inclusion considerations across all facets of the Guidelines. There is a greater emphasis of the need for attention to the implications of the intersectional identities of people with disabilities in clinical practice. New or substantially new sections were added about men, transgender individuals, and developmental phases. Additional information was added about family/care assistants, abuse, and health promotion – all grounded in research. More emphasis was made on situational and disability related factors affecting assessment, and even more specifically multimodal assessment.
Updates also include: (1) the addition of current research and terminology throughout; (2) the addition of the call to the field of psychology to be advocates and allies inclusive of serving those with disabilities in their practices; (3) expansion of the practical information provided along with a resource guide; and (4) expansion of the content on assistive technology.
The Guidelines are primarily intended for psychologists and psychology trainees who work in various settings with clients with disabilities.
Introduction
Over 41 million noninstitutionalized Americans are currently living with a disability (American Community Survey, U.S. Census Bureau, 2019). Individuals with disabilities and their advocates have worked for decades to eliminate attitudinal and physical barriers, to be fully included in all aspects of society, and to secure the freedom to choose their own futures (Jaeger & Bowman, 2005; Kerkhoff & Hanson, 2015; Krahn, et al., 2015; Priestley, 2001; Switzer, 2008). For a historical summary of events and legislative advancements and setbacks for people with disabilities, the reader is referred to two timelines (PAEC, 2018; National Consortium on Leadership and Disability for Youth, 2007). Advocacy efforts facilitated the passage of the Americans with Disabilities Act (ADA) of 1990 and more recently the ADA Amendments Act of 2008 (ADAAA) that broadened the definitions of “disability,” “substantially limits,” and “major life activities.” Nonetheless, many people with disabilities continue to encounter both blatant and subtle discrimination in employment, housing, education, recreation, child-rearing, and health care, including mental health services (Banks & Kaschak, 2003; Basnett, 2001; Kirschbaum & Olkin, 2002; Krahn, et al., 2015; National Council on Disability, 2012; Raphael, 2006; Schriner, 2001; Smart, 2001; Stapleton et al., 2004; Waldrop & Stern, 2003; Woodcock, Rohan, & Campbell, 2007).
Although many persons with disabilities experience discrimination, each individual responds differently to those experiences. Moreover, each person assigns a unique meaning to disability, depending on the nature of impairment, the quality of social support, and life demands (Olkin, 2012; Olkin & Taliaferro, 2005; Vash & Crewe, 2004). People with disabilities, like all people, have influences in their lives that contribute to their development and experiences, such as their culture, religion, family of origin, community, education, socio-cultural context, employment, friends, significant others, and co-workers. They are also affected by system-wide factors, such as governmental policies, available programs, and associated funding. Such common influences shape a person’s individual disability experience. Above and beyond their disability experiences, disabled individuals have their own life experiences and, like everyone else, their own personal characteristics, histories, intersecting identities, and life contexts that affect their psychological needs. To work effectively with people who have disabilities, psychologists should strive to become familiar with how disability and related factors influence their clients’ psychological well-being and functioning. For example, the disability experience may be influenced by functional capacities, energy levels, pain, age of onset, manner of onset (e.g., military trauma), and whether the disability is static, episodic, or progressive. It is also influenced by one’s experience of community. Disabled individuals who have limited contact with other people who have disabilities in their families, at school or work may experience feeling different from others or even ostracized. Individuals with invisible disabilities (e.g., learning disabilities, mental illness, brain injury, chronic pain) may have difficulty convincing others they even have a disability (Smart, 2001; Taylor & Epstein, 1999). Becoming familiar with the experience of living with a disability increases empathy and understanding, and thus enhances assessments and interventions. It is important for psychologists to become aware of how their own attitudes, reactions, conceptions of disability, and possible biases affect their professional relationships with clients who have disabilities. Psychologists can also benefit from learning the best “barrier-free” psychological practices in working with clients with disabilities, including providing reasonable accommodations and appropriately integrating disability-related issues into assessment and intervention.
Unfortunately, while psychologists receive extensive training in how to approach mental health issues, they rarely receive adequate education or training in disability issues (Gibson, 2009; Olkin & Pledger, 2003; Strike, Skovholt, & Hummel, 2004). Few graduate psychology training programs offer disability coursework (Olkin & Pledger, 2003; Weiss, 2010). Limited training and experience may leave many psychologists unprepared to provide professionally and ethically sound services to clients with disabilities. Further, many psychologists seek to develop disability competence after they have completed formal training.
The goal of these Guidelines for Assessment and Intervention with Persons with Disabilities is to help psychologists, psychology students, and psychology training programs conceptualize, design, and implement effective, fair, and ethical psychological assessments and interventions with persons with disabilities. The Guidelines provide suggestions on ways psychologists may make their practices more accessible and disability sensitive, and how they may enhance their working relationships with clients with disabilities. The Guidelines include information on how disability-related factors and sociocultural experiences of disability can impact assessment and intervention. Resources and suggestions are provided throughout the Guidelines to facilitate education, training, and experience with disability constructs important for effective psychology practice.
It is hoped that the Guidelines increase discussion, training, and awareness about disability across the profession and with other health professionals. It is also hoped that psychology training programs will use these guidelines to consider specific curricular revisions and program modifications that ensure disability issues are addressed and all training opportunities are accessible.
Such interest may additionally contribute to needed research on disability-related issues in assessment (e.g., test construction, norms, use of accommodations) and interventions (e.g., empirically informed activities and programs) as well as enhanced, culturally appropriate communication and decision-making with clients and health care teams.
The Guidelines are based on core values in the Ethical Principles of Psychologists and Code of Conduct (American Psychological Association, 2017; Smart, 2001). The core values include respect for human dignity and recognition that individuals with disabilities have the right to self-determination, participation in society, and equitable access to the benefits of psychological services. Psychologists recognize their role in facilitating an individual’s health and well-being. Additionally, the core values include recognition that people with disabilities are diverse and have unique individual characteristics (like all people), and that disability is not solely a biological characteristic; it is also characterized by the individual’s interaction with the physical, psychological, socioeconomic, and political environment. For example, the intersectionality of poverty, disabilities, and multiple minoritized identities (e.g., gender, race, and ethnicity) is well documented (McAlpine & Alang, 2021) and is included in the discussion on intersectional identities in Guideline 7.
Disability is a broad concept that encompasses a wide range of functional limitations and barriers to participation in community life (World Health Organization, 2001). Psychologists are recognized for having a firm grasp on impairments that arise from issues of emotional disturbance and mental health disability. Accordingly, although the APA Guidelines apply to persons with all types of disabilities, including mental health issues, disability issues arising from impairments less known to many psychologists, such as mobility, sensory, communication, and neurological impairments, are emphasized. The Guidelines also emphasize environmental factors that may influence the experience of disability and that potentially limit assessment validity. Suggestions are included for accommodations that may mitigate these factors.
An extensive literature search was conducted of psychological, medical, rehabilitation, vocational, and educational databases, searching in the areas of disability models, professional relationship and communication issues, attitudes and biases, intersectionality, assessment and intervention across the developmental trajectory, and regulatory and legal resources. The literature reviews were broad in scope, covering both quantitative and qualitative traditions tied to various specialty areas in disability research (e.g., clinical rehabilitation, neuropsychology, rehabilitation psychology, disability studies, education, vocational rehabilitation, forensics). The identified literature represents theoretical, professional, and clinical literature focusing on specific disabilities as well as disability more broadly conceptualized. Along with the original Guidelines, this literature serves as a basis for the guidance offered in this document.
Guidelines are not standards. Standards are generally mandatory and may have an enforcement mechanism. Guidelines are intended to be aspirational and facilitate the profession’s continued systematic development and to ensure that psychologists maintain a high level of professional practice. Guidelines are not exhaustive and do not apply to every professional and clinical situation. They are not definitive and do not take precedence over a psychologist’s well-informed judgment. Applicable federal and state statutes also supersede these Guidelines.
The Guidelines are primarily intended for psychologists and psychology trainees who work in various settings with clients with disabilities. Setting examples include hospitals, rehabilitation, and community service settings; outpatient practice; educational, religious, and correctional facilities; employment settings; and business settings addressing legal, insurance, and/or compensation issues. The Guidelines are designed to facilitate a psychologist’s work with clients who have disabilities, not to restrict or exclude any psychologist from serving clients with disabilities or to require specialized certification for this work. The Guidelines also recognize that psychologists who specialize in working with clients with disabilities may seek more extensive disability training consistent with specialized practice. Many avenues exist for psychologists and their students to gain expertise and/or training to facilitate ethical, competent work with individuals who have disabilities. The Guidelines are not meant to be prescriptive, but instead offer recommendations on areas of knowledge and clinical skills considered applicable to this work.