Advocates ask to be ‘at the table’ amid talks of budget cuts to disability agency

Danielle J. Brown • January 27, 2025

Despite some conversations between state officials and the disability community, advocates say they’re not being heard.

From left, Laura Howell, CEO of Maryland Association of Community Services; Ande Kolp, executive director for The Arc of Maryland; and Mat Rice, executive director for People on the Go of Maryland, testify Thursday at a Senate Budget and Taxation Committee hearing. (Photo by Danielle J. Brown/Maryland Matters)

Members of the disability community told a Senate panel Thursday that they feel they’re being left out of the conversations surrounding potentially huge budget cuts to the state agency responsible for administering resources for their community.


“The community is here to work with the department — we’re here to be a voice. But I don’t know that we feel that we’ve been heard,” said Mat Rice, executive director for People on the Go of Maryland, in testimony before Senate Budget and Taxation Committee.


“We ask you to please consider the full impact of these cost-containment measures and not to turn back the clock on a marginalized community that has made significant civil rights progress,” he said.


The cost-containment measure he was referring to is a proposed $200 million cut to the budget for the Developmental Disabilities Administration, one of the largest hits in a fiscal 2026 budget that has to close a projected $3 billion spending gap.


When he unveiled what he called his “growth agenda” budget last week, Gov. Wes Moore (D) said it included $1 billion in new revenues, including $500 million from the state’s Rainy Day Fund, but $2 billion in cuts and government efficiencies. One of the biggest single cuts was to the DDA, which state Budget Secretary Helene Grady said has been growing at an unsustainable rate, “from $850 million in fiscal 2023 to nearly $1.5 billion over just two years.”


About 20,500 Marylanders with developmental disabilities got state support last year to help their families afford services, usually through a Medicaid waiver that also brings in federal dollars.


The waivers provide two avenues for services — a community model where people join an established organization for disability care or a self-directed model where the waiver recipient or their family hires individual employees for services.


The proposed cuts hit several programs and resources currently provided through the DDA, according to documents from the Department of Health. Many of those proposed cuts would restrict current rate increases for certain providers or programs, such as a geographic rate differential for work in certain counties in central Maryland, and one-on-one care for high-needs patients.


Health Secretary Laura Herrera Scott told the Senate committee Thursday that there are regular stakeholder meetings where members of the public can voice their concerns to the department. But advocates and members of the developmental disability community said they do not feel that their voices and concerns are not being prioritized by the department as the legislature works on next year’s budget.


The advocates worry that service providers, whether they are in a community model or self-directed care, will be asked to perform the same services for less pay, which could lead to personnel leaving the field to find better paying positions.


“Volatility is bad for people with developmental disabilities, and these proposals absolutely create volatility in our world,” said Laura Howell, CEO of Maryland Association of Community Services, in her testimony.


“We’re talking about real people, real families, real direct-support professionals — and they have to be at the forefront of anything that happens related to the DDA budget questions,” Howell said.


Herrera Scott said that in addition to regular stakeholder meetings, the department is also developing a communication plan for providers should the proposed cuts go into effect.


We will have to work very closely with our community partners in all of this – have them at the table to help us design a system that would allow for the transition for these cost-containment measures to be effectuated,” she told the committee. “We will be communicating with the community in the very near future to set up these work group meetings.”


But Ande Kolp, executive director of the Arc of Maryland, said communications with the department have been infrequent over the last year, and usually limited to 30-minute sessions.


“I’ve been in the field for over 30 years, and we used to be able to call and have conversations and work through issues … that’s been absent since January 2024,” she told the committee. “It’s been very different.”


Rice agreed that conversations with the agencies are too short to lay out the disability communities concerns regarding the budget and other issues in the DDA program.


“Can you really have meaningful dialogue in a meaningful way when you engage with the department … in a 30-minute meeting?” he asked. “My answer to that … would be no.”


The budget process is ongoing, and Kolp is hopeful that members of the committee appreciate the concerns raised by advocates.


“I think we have a lot of attention from this committee, so that’s the good news,” she said after the meeting. “We have a lot of people who get it, either because they have just been with us for several years, or they have a family member with a disability in their lives, so it matters to them. That’s a really good place to start with this.


“The department – I think we really, really desire to be at the table with them to come up with some solutions, because I think we have some ideas of efficiency,” Kolp said. “We just need our offer to be accepted.”


Citation:

  • [ORIGINAL ARTICLE] Advocates ask to be ‘at the table’ amid talks of budget cuts to disability agency by Danielle J. Brown: https://tinyurl.com/5c52hvm6
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BALTIMORE -- A proposed bill in Maryland would allow residents to disclose "nonapparent disabilities" on their driver's licenses or identification cards. Eric's ID Law, or HB707, [01] would require the Motor Vehicle Administration (MVA) to add a certain symbol to licenses, ID cards or moped permits indicating that the applicant has a nonapparent disability. The idea was proposed by a Maryland family during an appearance on ABC's "The View," The Baltimore Banner reported. [02] The Carpenter-Grantham family had the idea after the 2020 murder of George Floyd [03] which sparked protests across the nation. "I realized that I have an African American son with an invisible disability," mother Linda Carpenter-Grantham said during the TV appearance. The bill was introduced in the state Senate during the 2024 legislative session but missed a deadline in the House. The proposed bill would require the MVA to establish public outreach programs to educate the public about the new symbols or notations. The MVA would work with disability advocates to design the symbols. The MVA would be prohibited from sharing information about an applicant's disabilities. The bill would also prevent the MVA from asking an applicant to provide proof of their disability or reject an application because the listed disability does not match other documents associated with the applicant. Under the bill, the Maryland Police Training and Standards Commission and Department of State Police would have to immediately implement training for police interactions with those who have nonapparent disabilities noted on their IDs. The bill will be the subject of a hearing on Feb. 13 at 1 p.m. What is a nonapparent disability? According to the proposed bill, a nonapparent disability is a health condition that is not immediately obvious or visible, this could include developmental or intellectual disabilities. According to a study by the National Institutes of Health (NIH), [04] common nonapparent disabilities are anxiety and depression, Alzheimer's, deafness, post-traumatic stress disorder (PTSD), attention-deficit hyperactivity disorder/attention deficit disorder (ADHD/ADD), and diabetes among others. People with developmental disabilities are about seven times more likely to encounter law enforcement than neurotypical individuals, according to a 2001 study by the Department of Justice. [05] Citations: [WEBSITE] Legislation: Eric's ID Law , or HB707: https://tinyurl.com/4r5s8ntp [ARTICLE] Maryland mom and her autistic son pitch a disability safety bill on ABC’s ‘The View’: https://tinyurl.com/4nzukspm [ARTICLE] George Floyd's death sparks large protests, confrontations with police: https://tinyurl.com/263hk9sk [STUDY] Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations: https://tinyurl.com/bdexd9js [ABSTRACT] Contact with Individuals with Autism: Effective Resolutions: https://tinyurl.com/56d6yd44 [ORIGINAL ARTICLE] Proposed bill would allow Marylanders to disclose nonapparent disabilities on their IDs: https://tinyurl.com/9k7z6nyh 
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New estimates show that 61.8 million people around the globe have autism and that the developmental disability is among the most common health issues facing youth. As of 2021, researchers found that 1 in 127 people worldwide were on the spectrum, according to findings published [01] recently in the journal The Lancet. Autism was twice as likely to affect males versus females and there was high prevalence among young people, with the condition ranking in the top 10 causes of non-fatal health burden for those under age 20, the study found. The findings are based on a review of studies and data that was conducted as part of the Global Burden of Diseases 2021 Study, which is considered the largest scientific effort to measure the prevalence and impact of various conditions. The autism rate identified in the new study “substantially changed estimates” from the last version of the report in 2019, but the researchers attributed the increase to updates in their methodology, in particular excluding studies that were likely to undercount prevalence. Researchers identified variances in prevalence by geography with autism affecting 1 in 163 people in tropical Latin America versus 1 in 65 people in the higher-income Asia Pacific region. “There are many factors contributing to this wide range, including varying exposures to risk factors, cultural variation, behavioral norms, or screening tools and diagnostic tools being used in those locations, and also how people are responding to these surveys, or whether they even choose to respond or participate in the survey in the first place,” said Dr. Damian Santomauro, an affiliate assistant professor at the Institute for Health Metrics and Evaluation at the University of Washington who led the study. “Work is currently ongoing to explore ways to quantify and correct for these differences so we can paint the most accurate picture of the prevalence of autism globally.” The latest estimates from the Centers for Disease Control and Prevention [02] indicate that 1 in 36 American children are on the autism spectrum. That figure is based on data collected on 8-year-olds in 2020. By contrast the rate was 1 in 150 in 2000. Experts attribute the rise in diagnosis to greater awareness of the developmental disorder. Those behind the new study say they hope their findings will prompt better policies and greater supports for individuals with autism around the world. “The prevalence and health burden of autism persisted across the lifespan,” Santomauro said. “These findings highlight the need for early detection and lifelong supportive services for autistic individuals.” Citations: [ARTICLE] The global epidemiology and health burden of the autism spectrum: findings from the Global Burden of Disease Study 2021: https://tinyurl.com/4xwk9ebm [ARTICLE] Autism now affects 1 in 36 kids, CDC says: https://tinyurl.com/3m5hve86  [ORIGINAL ARTICLE] Autism Affects More Than 60 Million Worldwide, Study Finds: https://tinyurl.com/24fz2bs3
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By Zoe Beketova, Yale University December 11, 2024
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
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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
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