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The infrastructure to train and keep direct service providers for those with intellectual and developmental disabilities has been neglected, resulting in a crisis that must be addressed, writes Karen Lee. Photo by Getty Images.

The nation’s largest retailer is piloting a new program aimed at enabling people with disabilities to shop more independently. Walmart is providing free access to visual interpreters at its stores and on its website. The company is partnering with Aira, a third-party service, to connect customers with sighted interpreters who can relay detailed information in real time about their surroundings, help them navigate or read signage, labels and more. To use the service, individuals stream live video of their surroundings through the Aira mobile phone app. Visual interpreters are trained to offer objective feedback so that users can make independent choices, Walmart said. And, since the retailer is offering complementary access to the service, company officials said that customers will be able to take as long as they need to wade through their options. Gayatri Agnew, head of Walmart’s Accessibility Center of Excellence, said that offering access to Aira is just the company’s latest move to improve the shopping experience for people with disabilities. She cited the recent addition of sensory-friendly shopping hours, making Caroline’s Cart available at every store and expanding Walmart’s adaptive product lines. “The reality is, we have tons of shoppers with disabilities who we want to make sure are having as good, if not better, of a shopping experience with us as someone who doesn’t have a disability,” Gayatri said. 

People with disabilities (PWD) make up 25% of the U.S. population. They face elevated mental health concerns and are more likely to utilize mental health services compared to non-disabled individuals. Yet, PWD also report higher unmet mental health service needs and barriers to accessing care. Dr. Katie Wang, Ph.D. '14, associate professor in the Department of Social and Behavioral Sciences at the Yale School of Public Health (YSPH), and colleagues recently examined the experiences of PWD who engaged in mental health services. The study is published in [ 01 ] the journal SSM - Qualitative Research in Health. "We interviewed 20 U.S. adults with a wide range of visible and invisible disabilities," said Wang, a social psychologist and the study's lead author. "Participants identified ableism as a major concern when they talked about their experiences in seeking mental health services ." Ableism is prejudice and discrimination against people with disabilities, based on the belief that people without disabilities are superior. It can be conscious or unconscious and is embedded in institutions, systems, and society as a whole. It manifests in many forms, including harmful stereotypes, misconceptions, and generalizations. This can include the belief that people with disabilities are less able to contribute and participate in society; and the belief that people with disabilities are to be pitied or viewed as inspirational rather than just as normal human beings. Participants in the qualitative study [ 02 ] ranged in age from 22 to 67. Their disabilities included chronic health conditions (e.g., epilepsy), mobility disabilities (e.g., spinal cord injury), sensory disabilities (e.g., blindness) or, for a majority, a mixture of different disabilities alongside mental health conditions. Upon speaking with the participants about their experiences with mental health care providers, the researchers identified several recurring themes. A common experience cited was providers holding misplaced assumptions about the impact of disability on mental health as well as a general lack of knowledge about disability, either overlooking the connection between mental health and the disability or minimizing the role of disability in a person's life. Many participants also described providers not believing their lived experiences, being stereotyped, or ignored. "These results underscore the importance of emphasizing disability competency when training the next generation of mental health providers," Wang said. Care is a challenge for people with multiple minority identities The study also explored the quality of mental health care received by individuals with multiple minority identities, including having a disability. Such individuals often struggle with receiving professional help, yet little research exists on the issue. One of the participants, when discussing an unhelpful provider, said that it's hard for them, as a person with many minority identities, "to know which identity it is and why it triggered them [the provider]." The researchers found that having intersecting minority identities—such as being Black or transgender and disabled—presents additional barriers to receiving quality care. Systemic ableism undermines good intentions Another major point raised by participants was the systemic ableism within mental health care systems. "What struck me in particular is the findings pertaining to systemic ableism, specifically, how even well-intentioned mental health care providers can perpetuate ableism, given that they are working in a fundamentally ableist system," Wang said. "None of the people … want to hurt us, but the structures are built to hurt us and so they always will," one of the participants stated. Participants raised this point when discussing the emotional pain providers often unwittingly caused them during a mental health session. A need for better access to care A final point identified in the study was that physical accessibility barriers also present obstacles for PWD accessing mental health care. Telehealth, a form of online health care support, has been praised for mitigating some of the physical barriers that people face, but not all participants in the study could navigate virtual interactions. For example, lip reading is particularly difficult behind a virtual screen, some deaf or hard of hearing participants said. "I think what we want to be careful of, and what a lot of participants were warning against, is we should not be thinking of telehealth as a silver bullet," Wang said. "It does not fix accessibility across the board. It does not remove all access barriers. But having telehealth as an additional tool in the toolbox is definitely a benefit for the disability community." In response to the findings, the researchers are calling for systemic structural reforms such as increased training on disability competency for providers as well as the recruitment and—vitally—retainment, of disabled faculty and students to normalize discourse. For practitioners, the study recommends self-education on disability awareness and more of a focus on improving accessibility to their care, whether through increased flexibility, universal design practices, or openness to learning about disabilities. Wang stressed that ableism is more than just an interpersonal phenomenon: it is deeply embedded in health care systems. With YSPH's focus on addressing inclusivity, intersectionality, and belonging in public health and health care, studies such as Wang's shine a light on the experiences of PWD across different conditions and identities when seeking mental health support. More information: Katie Wang et al, Ableism in mental healthcare settings: A qualitative study among U.S. adults with disabilities, SSM - Qualitative Research in Health (2024). DOI: 10.1016/j.ssmqr.2024.100498

The President will host a dinner honoring Special Olympics athletes as they prepare to compete at the upcoming Special Olympics World Winter Games in Turin in March 2025.

Washington, D.C. – U.S. Senators Susan Collins and Ben Ray Luján (D-N.M.), members of the Senate Committee on Health, Education, Labor, and Pensions, applauded Senate passage of their bipartisan Autism CARES Act of 2024 . The bill would renew and expand federal support for research, services, and training related to autism spectrum disorder and other developmental disabilities. Autism CARES is the main source of federal funding for autism research, services, training, and monitoring. “This bill will continue the successful programming across HHS that helps us better understand the causes and the symptoms of the Autism Spectrum Disorder and improve the lives of families affected by it,” said Senator Collins . “Reauthorizing this important law is critical to expanding research at the NIH, supporting the CDC's effort to increase public awareness and early detection of autism spectrum disorder, and strengthening and expanding the Health Research and Services Administration's workforce training to identify and support children and youth with autism as well as their families.” “Due to the research and increased training and awareness spurred by the Autism CARES Act , children are being diagnosed earlier and are receiving appropriate services from trained providers,” said Senator Luján . “Not only does the Autism CARES Act of 2024 renew federal support for autism spectrum disorder and other developmental disabilities, but it also expands critical research and training programs that benefit people with autism and their families. I’m proud to see this bill pass the Senate, and now I am calling on the House for swift passage to continue to drive research and support individuals with autism and other developmental disabilities for years to come.” Specifically, the Autism CARES Act : Includes over $2 billion in authorized federal spending on autism research and training programs for the next five years; Includes new language that directs the NIH Director to ensure a more inclusive approach to autism research; Requires the Government Accountability Office to issue a study and report on how to increase the number of developmental behavioral pediatricians; Includes the study of the aging process as a focus area of autism research activities to help propel future research on autism and aging; and Creates a new Autism Intervention Research Network for Communication Needs that will benefit autistic individuals who may be unable or limited in using speech or language to communicate. "We greatly appreciate the leadership of Senators Ben Ray Luján and Susan Collins in advancing the Autism CARES Act of 2024 through the Senate,” said Keith Wargo, President & CEO of Autism Speaks . “Families have benefited from the tremendous impact of this law over the past two decades. This next iteration expands efforts to address gaps in autism healthcare and services and represents a forward-looking approach to driving progress in research, supports and services for autistic individuals across the spectrum and lifespan for years to come." "AUCD commends Congress on its unwavering commitment to improving the lives of people with autism and their families. We are grateful to Senator Luján, Senator Collins, Representative Smith, and Representative Cuellar for their unwavering leadership to get the CARES Act reauthorized this Congress. The CARES Act that includes the Leadership Education in Neurodevelopmental Disabilities will have a tremendous impact on making sure people with autism and other neurodevelopmental disabilities and their families in every state and territory receive the care needed from trained professionals to support and improve their health and wellbeing,” said AUCD Public Policy Director Cindy Smith . “We look forward to continuing to work with leaders in Congress and the community to continue to make a positive impact in the lives of people with autism and their families.” “The reauthorization of Autism CARES brings us one step closer to ensuring stronger, more meaningful inclusion for the entirety of the spectrum in research, supports, and services. This is in great part because of the inspired leadership and deep commitment of Senator Lujan and Senator Collins to autistic people in their own districts and across the nation. Hope is on the horizon, and we are grateful,” said Cofounder and President of Profound Autism Alliance Judith Ursitti . According to the Centers for Disease Control and Prevention (CDC), approximately 1 in 36 children have been diagnosed with autism – an increase of approximately 300 percent since 2006. The legislation is supported by Autism Speaks, the Profound Autism Alliance, the Association of University Centers on Disabilities, and the Autism Society. [Original Source] https://tinyurl.com/34fhy4tz

MARYLAND – Caregivers of some disabled individuals in Maryland are wrestling with a whole new set of rules and regulations. On November 21st, the Maryland Department of Health (MDH) Developmental Disabilities Administration (DDA) unveiled its new 116-page Self-Directed Services Manual. State officials say the guidelines aim to improve the system for those in it. However, caregivers say it’s only creating new headaches. Self-Directed Families Contend With New Manual “The number one way it has affected us has just been by throwing us into chaos,” said Salisbury resident and caregiver Michele Gregory. “This was something that was dropped without any fanfare. It was kind of plopped in our laps.” In Maryland, 3,632 families have opted to be self-directed. By doing so, they can care for their loved ones at home and choose who those caregivers are. The state provides funds to help cover those needs. That includes the ability to hire support staff to help with the disabled family member’s daily needs. In 2024, about 20,500 developmentally disabled Marylanders received a Medicaid waiver to afford those costs. The person who receives that waiver serves as a designated representative and is responsible for organizing caregiving services. Often, self-directed families provide the care themselves. Gregory, her husband, and their 30-year-old son Nick are just one of those families. Nick lives with a rare form of epilepsy, and Gregory says caring for him is often a two-person job. However, it’s always been worth it, she says. “If my son was given a choice between me and his father or someone that he didn’t know in a facility that he’s not comfortable in, I guarantee you he would choose to be with us,” Gregory said. Wrestling the Rules Among the new changes, the caregivers cannot be both a legal representative and the one providing care. “There have been families that are single parents who are caregiving for their child, and they don’t have anybody else to be a representative and be a caregiver for their child or family member,” Gregory said. Meanwhile, Gregory says she and other caregivers have not received timely compensation for months. She says that they are struggling with what she calls a glitchy online verification platform. “I think there’s been a consistent disregard for the time and energy that people have to put in,” Gregory said. “I shouldn’t have to call my state legislator to get paid.” State Officials: Changes to Benefit Program Participants State officials, however, say the new manual lays out changes made with the best interest of families like the Gregory’s in mind. In a statement, MDH spokesperson Chase Cook said in part: “Changes will not only help reduce processing delays—ensuring care providers are paid in a more timely manner and participants receive the level of care they need—but will ensure that these taxpayer-funded services are delivered responsibly and with appropriate oversight, in accordance with state and federal guidelines… The DDA must follow all published rules and guidance, and this process does not always result in service authorizations that match family members’ expectations.” Cook added that participants who disagree with decisions made in a DDA-operated Medicaid waiver program may appeal through the Medicaid Fair Hearing process. Participants, he stated, are also notified of their right to appeal after a decision is made. “Improving the Self-Directed Services delivery model will be an ongoing process and engagement with our provider and participant communities is one of DDA’s core values,” Cook stated. “We look forward to working in partnership to promote the delivery of these services for the Marylanders and families who need them.” Caregivers Unconvinced Gregory, however, remains unconvinced that the changes will benefit self-directed families. “Truly, the amount of fraud that they’re going to catch with this is minuscule to the negative impact that’s going to be had by all on the honest caregivers,” Gregory said. “It may cost more for the caregiving on the day-to-day, but in the long run [Nick] is not charging Medicaid hundreds of thousands of dollars for multiple hospital stays every year because he stays healthier [at home.]” The DDA’s Waiver Advisory Council, meanwhile, is designed to provide program participants a platform to give feedback and make suggestions. However, Gregory says that opportunity will not come for her. She is an active member of the Self-Directed Advocacy Network of Maryland. Gregory has also served on the Salisbury City Council for years. “I applied for it, I didn’t get it,” Gregory said. “I think I would be the perfect person to be involved in this because I understand the legislative side, I understand the law side, and I also understand the caregiving side of things.” Looking Ahead, More Information Now, Gregory is hoping Governor Wes Moore will pay closer attention to the issue. She says it’s for the sake of self-directed families across the state. “I don’t believe that our governor would want to see the state treating one of its most vulnerable communities this way,” Gregory said. “I truly don’t.” Citations: [ORIGINAL ARTICLE] https://tinyurl.com/yaj2za8d [Self-Directed Services Manual] https://tinyurl.com/ytmfzmja

The University of Maryland will continue its partnership with the Special Olympics for an inclusive intramural sports program designed for students with intellectual and developmental disabilities. The Unified Sports program pairs students and their peers with disabilities to compete together on intramural sports teams, according to Julie Johnson, this university’s intramural sports and the Reckord Armory assistant director. It first launched at this university last year with bocce and basketball, Johnson said. This academic year, the program has expanded to include soccer and flag football. The program also has a relationship with this university’s TerpsEXCEED program, which enables people with intellectual and developmental disabilities to participate in campus activities, including the unified sports offerings. Johnson said she brought the unified sports initiative to College Park last year after starting a similar program at Towson University. Unified sports programs have become increasingly popular across the National Intramural and Recreational Sports Association, which includes this university, Johnson explained. “This is a perfect opportunity for [this university’s] students to grow through sports and they make friends with people who are participating in this program that they may never have met otherwise,” Johnson said. Johnson said she loved volunteering with the Special Olympics in middle and high school. As a result, she hoped to get involved with the Special Olympics in her professional career, she added. Johnson emphasized the valuable social connections and personal growth that unified sports foster for all participants. Reagan Wagner, a freshman criminology and criminal justice major said she became involved with the program after learning about its connection to the Special Olympics. Wagner’s mother is affiliated with the Special Olympics and encouraged her to join the unified sports program, she said. “I don’t have a disability myself, but I’m finding different communities on campus [and] trying to see where I have a group to hang out with,” Wagner said. Evan Miller, a graduate student, is a peer advocate for the TerpsEXCEED program. Evan said the Unified Sports program allows him to spread kindness in an athletic setting. “It brings kindness and happiness to many people,” Miller said. “It makes them feel more appreciated to be part of something they would really enjoy.” Moving forward, Johnson is optimistic about the program’s continued growth and impact. The unified flag football league kicked off this fall, Johnson said, and the program plans to add a volleyball league in the spring semester. For Johnson, her goal is for this university’s unified sports teams to compete with other schools at the regional and national levels. She hopes this university gains recognition from the Special Olympics, which celebrates schools for their work in unified sports and other unified activities on campus. “My goal is to get us to be a unified banner school and a unified champion banner school,” Johnson said. “I want us to get to banner status and have that national recognition and continue to grow the program.” Citations : [ORIGINAL ARTICLE] https://dbknews.com/2024/11/11/umd-unified-sports-program/

Hourly pay is on the rise for direct support professionals, but advocates say that doesn’t appear to be enough to forestall the barriers facing people with developmental disabilities seeking services. Across the nation, hourly wages for direct support professionals averaged $15.79 in 2022, exceeding $15 per hour for the first time ever. Despite the increase, however, the turnover rate in the field remained over 40%, leaving many service providers struggling to maintain enough staff to support people with developmental disabilities living in the community. The figures come from a report [02] issued by United Cerebral Palsy and the American Network of Community Options and Resources, or ANCOR, which represents disability service providers nationally. Traditionally, the advocacy groups have released an annual “Case for Inclusion” report [03] assessing how well states are supporting people with developmental disabilities in the community. The new brief is the first in a series of “data snapshots” released under that umbrella. In an ANCOR survey [04] late last year, 77% of providers said they were refusing or no longer accepting referrals and 44% had discontinued offerings. The majority indicated that they were considering additional service cuts. Providers got some help from the 2021 American Rescue Plan, [05] a pandemic relief package that included $26.3 billion to improve recruitment and retention of direct care providers, according to the report. But, that money — which the advocacy groups say is largely responsible for the increase in DSP wages — must be used up by March 31, 2025. “Increased hourly wages and reduced turnover and vacancy rates highlight providers’ desire to offer proper compensation and actively engage in strategies to help recruit, hire and retain direct support professionals. With increased resources due to state and federal action, including emergency funding from the American Rescue Plan, it’s clear that providers are eager and willing to address the ongoing workforce crisis — they just need the support to do so,” said Barbara Merrill, chief executive officer at ANCOR. As of 2022, average vacancy rates for full-time DSPs remained at over 15%, the report indicates. And, wages in some states like Louisiana and Alabama were still under $11 per hour. Meanwhile, more than half a million Americans with developmental disabilities were on state waiting lists for services last year, with waits averaging 50 months, data shows. “Decades of underinvestment in the Medicaid program, in which reimbursement rates are set by states and financed with federal matching funds, have effectively rendered providers powerless to raise wages to a competitive level,” said Armando Contreras, president and CEO at United Cerebral Palsy. “Without meaningful action to support the direct care workforce, and the indispensable services direct support professionals provide, people with intellectual and developmental disabilities will continue to spend years waiting for services, delaying their fundamental right to live in their communities and in the most integrated settings possible.” Citations : [ORIGINAL ARTICLE] https://tinyurl.com/bdxr95vd [DATA SNAPSHOT] https://caseforinclusion.org/publications/data-snapshot [ARTICLE] IT MAY BE EVEN HARDER TO ACCESS COMMUNITY BASED SERVICES FOR THOSE WITH IDD: https://tinyurl.com/4eh6m8sk [ARTICLE] SURVEY OF DISABILITY SERVICES PROVIDERS FINDS DEEPENING CRISIS: https://tinyurl.com/5fkkmd4z [ARTICLE] BIDEN SIGNS STIMULUS BILL SENDING FUNDS TO DISABILITY COMMUNITY: https://tinyurl.com/3dewudpp

Congress is one step closer to re-upping the nation’s primary autism law with little time remaining before it’s set to expire. The U.S. House of Representatives voted Wednesday 402-13 to pass the Autism Collaboration, Accountability, Research, Education and Support, or Autism CARES, Act of 2024. The bipartisan bill, which represents an agreement between House and Senate lawmakers, would allocate more than $1.95 billion over the next five years for research, prevalence tracking, screening, professional training and other government activities related to autism. The law originated in 2006, but the current version is set to sunset Sept. 30. “While significant progress has been made in understanding and accepting autism, much work remains to ensure that all autistic individuals have access to services and supports tailored to their unique needs,” said Christopher Banks, president and CEO of The Autism Society of America. “The Autism CARES Act of 2024 addresses key areas such as research on autism and aging, services for those with more complex needs, communication challenges and the shortage of developmental pediatricians — all crucial steps toward improving the lives of autistic individuals.” The bill passed by the House this week would renew many existing autism-related programs and direct the National Institutes of Health to ensure that research reflects the full range of cognitive, communicative, behavioral and adaptive functioning needs of those on the spectrum. It would grow the number of NIH Centers of Excellence, require the NIH to produce an annual budget plan for autism research and it includes efforts to promote the adoption of assistive communication. The measure also mandates a government report on ways to increase the number of developmental behavioral pediatricians as well as one looking at youth aging out of school. Even with House passage, the legislation must still be approved by the Senate and signed by President Joe Biden in order to become law. “Since the Autism CARES Act’s landmark passage in 2006, families like mine have benefited enormously from the transformative impact of this law, which has increased our understanding of autism, expanded health care training on autism and led to the development of evidence-based services for individuals with autism across the spectrum and lifespan,” said Keith Wargo, president and CEO of Autism Speaks. “While we celebrate House passage, we urge the Senate to quickly take up and pass the Autism CARES Act and send it to the president’s desk prior to the Sept. 30th expiration.” Citations : [ORIGINAL NEWS ARTICLE] https://www.disabilityscoop.com/2024/09/19/house-votes-to-renew-autism-act-as-expiration-nears/31068/