Estimating Adults Living with Intellectual Disabilities in America - Our Experts Look at the Numbers
A new study conducted by faculty researchers at the Institute of Public and Preventive Health at Augusta University shows the prevalence of intellectual disability (ID) in adults.
But looking at childhood survey data of those with ID, conclusions can be drawn on how many adults have intellectual disability.
The study was conducted by Teal Benevides, PhD, assistant professor in the Institute of Public and Preventive Health at Augusta University, Biplab Datta, PhD, assistant professor in IPPH and the Department of Health Management, Economics and Policy, Jennifer Jaremski, research associate in IPPH, and Michael McKee, PhD, associate professor at the University of Michigan.
The study estimates the number of adults living with ID is .95% or 9.5 per 1,000 adults between the ages of 21 and 41.
“Intellectual disability is diagnosed in childhood,” said Benevides. “It needs to be diagnosed early. It’s not something that just happens in adulthood. So relying on the estimate that’s from childhood surveys is a good start. It’s just aging estimates up based off the current population of the U.S. So I do feel pretty confident that we can base future projections off in the absence of better epidemiological evaluations of prevalence.” She added it’s important to realize a lot of people with ID are now out of high school and age out of educational services to support them at the age of 21. They may fall through the cracks during the transition to adulthood and may not be receiving the services they need.
“Many adults with ID are going to require services and support. They’re likely going to require housing support, employment support and many of them are food insecure,” Benevides said. “I think policymakers at both the state and federal level need to know about this because regardless of whether or not our policymakers support Medicaid expansion, many people with ID are also going to need adequate healthcare coverage because the vast majority of people with intellectual disability are not employed.” Not just that, many of those with ID are more likely to experience disparities in housing, employment, education, poverty and more.
Biplab Datta and Teal Benevides In Georgia, Benevides said there is a waitlist of 7,000 people looking for Medicaid services for adults with intellectual and developmental disabilities, and there’s just not enough resources available to assist those with ID.
Another concern is that people with ID have the same life span and those who may prove care, such as parents or guardians, don’t know what will happen to their older children with ID when they aren’t around or are unable to assist them.
“What alarms me is we don’t have sufficient services and supports for adults. We just don’t have them,” she said. “When people ask for services, support and resources, there’s no place to point them to unless they are children.” Biplab Datta, PhD, is an assistant professor in Institute of Public and Preventive Health and in the Department of Population Health Sciences at Augusta University.
Teal Benevides, PhD, OTR/L is an associate professor and the Director of Faculty Development, Institute of Public and Preventive Health
Both experts are available to speak about this important research simply click on either expert's icon to arrange an interview and time to talk today.
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Biography
Teal Benevides, PhD, MS, OTR/L has a passion for describing, understanding, and addressing disparities among individuals on the autism spectrum, including racial and ethnic minorities, and autistic adults.
Areas of Expertise
Racial/Ethnic Disparities in Autism Services
Autism Research and Treatment
Mental Health Research
Services and Support
Adults With Autism
Autism
Education
Virginia Commonwealth University
PhD
Health Related Sciences
2014
Jefferson Health
Master of Science
Occupational Therapy
2004
William & Mary
Bachelor of Science
Psychology
2002
Affiliations
Organization for Autism Research : Member, Scientific Advisory Board
Autism in Adulthood : Deputy Editor
American Journal of Occupational Therapy : Associate Editor
Institute of Exceptional Care : Member, Advisory Board
Unveiling the Hidden Challenges: The Quest for Independence Among U.S. Adults with Intellectual Disabilities
BNN online
2024-02-22
Imagine navigating a world that doesn't always understand or accommodate your needs. Now, consider doing so with the added challenge of an intellectual disability (ID). This isn't just a thought experiment for about 818,564 adults in the United States, born in the 1980s and '90s, whose daily reality involves overcoming barriers that many of us can scarcely comprehend. A groundbreaking study by researchers at Augusta University, led by Teal Benevides, associate professor, sheds light on this often overlooked population, urging a reevaluation of how society supports adults with ID.
Researchers from Augusta University are using Census data to find out how many adults in the U.S. are currently living with intellectual and developmental disabilities.
Georgia Public Radio radio
2024-02-21
Researchers from Augusta University are using Census data to find out how many adults in the U.S. are currently living with intellectual and developmental disabilities
School learning transitions could heavily impact special needs students
WRDW online
2021-02-09
“We’re already seeing a dramatic rise in adolescents and adults on the autism spectrum in suicidal ideation and suicidal behaviors as well as other mental health crises,” Teal Benevides with the Department of Occupational Therapy at Augusta University said. Benevides says many of these students are regressing with skills they’ve already learned, causing even more stress on families and parents
New research addresses the needs of adults with autism
WJBF online
2017-02-03
When we think of autism, we often think of children and their struggle with school and interacting with other people. What we do not often consider is the fact that those children grow up and become adults. That void is something that researchers at Augusta University are investigating — how to care for adults with autism. It is obvious when you talk to Teal Benevides, an associate professor and occupational therapist at Augusta University, that she is excited about her work. Her latest project is “Priority Setting to Improve Health Outcomes: Autistic Adults and Other Stakeholders Engage Together”.
Access to Medicaid waivers varies with race, age, region – Spectrum
ABNT online
2022-04-22
Black and Hispanic people with autism or intellectual disability in North Carolina are less likely to receive a Medicaid waiver for home and community-based services than their white peers are, according to a new study. A person’s age and the county in which they live also affect their chances.
The waivers are the largest source of funds for home and community-based health-care services in the United States. The provisions allow Medicaid — insurance from the federal government for low-income families — to cover transportation and mental health services, as well as speech, physical and occupational therapy. How Medicaid administers these waivers, though, is left up to individual states, which has led to wide variation in their distribution.
“What alarms me is we don’t have sufficient services and supports for adults. We just don’t have them. When people ask for services, support and resources, there’s no place to point them to unless they are children.”
“Many adults with ID are going to require services and support. They’re likely going to require housing support, employment support and many of them are food insecure. I think policymakers at both the state and federal level need to know about this because, regardless of whether or not our policymakers support Medicaid expansion, many people with ID are also going to need adequate health care coverage because the vast majority of people with intellectual disability are not employed.”
Brief Report: Under-Identification of Symptomatic Menopause in Publicly-Insured Autistic People
J Autism Dev Disord
Teal W. Benevides, Barb Cook, Laura G. Klinger, Kiley J. McLean, Gregory L. Wallace, Meghan E. Carey, Wei-Lin Lee, Jonas Ventimiglia, Lauren D. Schiff & Lindsay Shea
2024-08-29
Abstract Menopause is a normal part of aging and in the general population is associated with chronic conditions that impact health, mortality, and well-being. Menopause is experienced differently by autistic individuals, although no studies have investigated this topic in a large sample. The purpose of this study was to investigate rates of, and factors associated with symptomatic menopause among autistic individuals and to identify the prevalence of co-occurring conditions in symptomatic individuals. We included autistic females aged 35–70 years enrolled for 10 + months in 2014–2016 Medicare and/or Medicaid (n = 26,904), excluding those with gender dysphoria. Those with symptomatic menopause were compared to a non-symptomatic reference group on demographic, enrollment characteristics, and co-occurring conditions through logistic regression. Approximately 4% of publicly-insured autistic females aged 46–70 years had symptomatic menopause in their medical records. Intellectual disability was associated with a lower likelihood of symptomatic menopause, and being Medicare-enrolled or dual-enrolled was associated with higher likelihood of having symptomatic menopause recorded. In adjusted models, rates of ADHD, anxiety and depressive disorders, headache/migraine, altered sensory experiences, altered sexual function, and sleep disturbance were significantly higher in the symptomatic menopause sample compared to the reference group. More work to better support autistic women in discussing menopausal symptoms and co-occurring conditions with primary care providers is needed, particularly among those for whom self-report of symptoms are more challenging to ascertain. Factors associated with specific types of health care coverage warrant greater investigation to support better identification.
Advancing Health Policy and Outcomes for People With Intellectual or Developmental Disabilities
JAMA Health Forum
Hoangmai H. Pham, MD, MPH; Teal W. Benevides, PhD, OTRL; May-Lynn Andresen, DNP, RN
2024-08-02
Importance At least 10 million people in the United States have an intellectual and/or developmental disability (IDD). People with IDD experience considerably higher rates of poor overall health, chronic conditions including diabetes, mental health challenges, maternal mortality, and preventable deaths. This Special Communication proposes national goals based on a community-led consensus model that advances priority health outcomes for people with IDD and their caregivers/partners and identifies critical policy opportunities and challenges in achieving these goals. A community-led consensus agenda offers a foundation for focusing research, improving data collection and quality measurement, enhancing coverage and payment for services, and investing in a prepared clinical workforce and infrastructure in ways that align with lived experiences and perspectives of community members.
Observations People with IDD prioritize holistic health outcomes and tailored supports and services, driven by personalized health goals, which shift over their life course. Caregivers/partners need support for their own well-being, and easy access to resources to optimize how they support loved ones with IDD. Development of an adequately prepared clinical workforce to serve people with IDD requires national and regional policy changes that incentivize and structure training and continuing education. Ensuring effective and high-value coverage, payment, and clinical decisions requires investments in new data repositories and data-sharing infrastructure, shared learning across public and private payers, and development of new technologies and tools to empower people with IDD to actively participate in their own health care.
Racial and Ethnic Disparities in Community Mental Health Use Among Autistic Adolescents and Young Adults
Journal of Adolescent Health
Teal W. Benevides Ph.D., M.S., Jennifer E. Jaremski M.P.A., Ed-Dee Williams Ph.D., Wei Song Ph.D., Hoangmai H. Pham M.D., M.P.H., Lindsay Shea Dr.P.H.
2023-06-01
Purpose The purpose of this cohort study was to evaluate differences in rate of co-occurring mental health (MH) conditions among transition-age autistic youth (TAYA) who are Black, indigenous, and other people of color, and to identify enabling variables associated with any community MH visit in this population.
Methods Medicare-Medicaid Linked Enrollees Analytic Data Source 2012 data were used for this study. TAYA 14–29 years old who received fee-for-service Medicare, Medicaid, or both were included. Predisposing, enabling, and need variables associated with both presence of MH conditions and any community MH visit were examined with general linear modeling.
Prevalence of intellectual disability among adults born in the 1980s and 1990s in the United States
Wiley Online
Teal Benevides, Biplab Datta, Jen Jerneski, M. McKee
2024-01-16
Background Prevalence of intellectual disability (ID) is currently estimated through parent report on surveys of children. It is difficult to estimate the number of adults living with ID in the United States because no comprehensive survey or surveillance allows for identification. The purpose of this study was to estimate the prevalence and number of adults with ID born between 1980 and 1999 using multiple years of the National Health Interview Survey (NHIS) and Census data.
Methods We concatenated the NHIS from 1997–2016 that evaluated parental response about whether a child aged 3–17 years had an ID. Using weighted survey analyses, we estimated the prevalence of ID among individuals across four birth cohorts—(1) 1980–1984, (2) 1985–1989, (3) 1990–1994, and (4) 1995–1999. The number of adults with ID was then extrapolated by applying these prevalence rates to Census population estimates (as of 1 July 2021) of respective birth cohorts.
Results Weighted prevalence of ID varied by birth cohort, sex, race and ethnicity, and US Census Bureau regions. The overall prevalence rate was 1.066 [95% confidence interval (CI): 0.831–1.302] for adults born between 1980 and 1984, 0.772 (CI: 0.654–0.891) for adults born between 1985 and 1989, 0.774 (0.675–0.874) for adults born between 1990 and 1994, and 1.069 (CI: 0.898–1.240) for adults born between 1995 and 1999. Overall, we estimate that 818 564 adults with ID who were approximately 21–41 years were living in the United States as of 2021.
Human immunodeficiency virus diagnosis and care among adults with intellectual and developmental disabilities who are publicly insured
Journal of Intellectual Disability Research
T. G. James, M. S. Argenyi, A. Gravino, T. W. Benevides
2023-10-19
Background This study aimed to assess the prevalence of human immunodeficiency virus (HIV) testing, HIV diagnosis and receipt of HIV care among adults with intellectual and developmental disabilities (IDDs) who are publicly insured in the USA.
Design This study is a cross-sectional analysis of Medicare–Medicaid linked data of adults with IDD who were publicly insured in 2012 (n = 878 186).
Methods We estimated adjusted prevalence ratios of HIV testing, diagnosis and receipt of antiretroviral therapy (ART). We also identified the relationship between predisposing (age, gender, race and ethnicity), enabling (Medicare, Medicaid or both; rural status; geographical location; and county income) and need-related characteristics (IDD diagnosis and other co-occurring conditions) associated with these outcomes.
Racial and ethnic disparities in benefits eligibility and spending among adults on the autism spectrum: A cohort study using the Medicare Medicaid Linked Enrollees Analytic Data Source
PLoS One
Teal W Benevides, Henry J Carretta, George Rust, Lindsay Shea
2021
Background Research on children and youth on the autism spectrum reveal racial and ethnic disparities in access to healthcare and utilization, but there is less research to understand how disparities persist as autistic adults age. We need to understand racial-ethnic inequities in obtaining eligibility for Medicare and/or Medicaid coverage, as well as inequities in spending for autistic enrollees under these public programs.
Methods We conducted a cross-sectional cohort study of U.S. publicly-insured adults on the autism spectrum using 2012 Medicare-Medicaid Linked Enrollee Analytic Data Source (n = 172,071). We evaluated differences in race-ethnicity by eligibility (Medicare-only, Medicaid-only, Dual-Eligible) and spending...
Interventions to address health outcomes among autistic adults: A systematic review
Autism
Teal W Benevides, Stephen M Shore, May-Lynn Andresen, Reid Caplan, Barb Cook, Dena L Gassner, Jasmine M Erves, Taylor M Hazlewood, M Caroline King, Lisa Morgan, Lauren E Murphy, Yenn Purkis, Brigid Rankowski, Sarah M Rutledge, Savannah P Welch, Karl Wittig
2020
Research has shown that autistic adults have poor health outcomes. We conducted a systematic review to identify existing interventions to address health outcomes for autistic adults and to determine whether these interventions address the priorities of the autistic community. We searched PubMed for articles that included an intervention, a primary health outcome measured at the individual (not system) level, and a sample population of at least 50% autistic adults. Studies were excluded if they were not peer-reviewed, had a focus on caregivers, were expert opinions on specific interventions, untested protocols, or interventions without a primary health outcome. Out of the 778 articles reviewed, 19 were found to meet the stated criteria. Based on the evidence gathered, two were considered emerging evidence-based approaches: cognitive behavioral approaches and mindfulness. The remaining interventions included in the review did not have sufficient evidence to support current use with this population. The majority of the studies included samples of young autistic adults, primarily male, without an intellectual disability. Anxiety, quality of life, depression, and behavioral issues were among the health outcomes measured in the final included articles. More research on preferred interventions with prioritized health outcomes of the autistic adult population is needed.
Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project
Autism
Teal W Benevides, Stephen M Shore, Kate Palmer, Patricia Duncan, Alex Plank, May-Lynn Andresen, Reid Caplan, Barb Cook, Dena Gassner, Becca Lory Hector, Lisa Morgan, Lindsey Nebeker, Yenn Purkis, Brigid Rankowski, Karl Wittig, Steven S Coughlin
2020
Autistic adults are significantly more likely to experience co-occurring mental health conditions such as depression and anxiety. Although intervention studies are beginning to be implemented with autistic adults to address mental health outcomes, little is known about what research autistic adults feel is needed, or what mental health outcomes are of value to them. The purpose of this article is to describe a project that involved more than 350 autistic adults and other stakeholders as coproducers of research priorities on mental health. Through a variety of methods including a large online survey, two large stakeholder meetings, and three face-to-face focus groups, the project team identified five top priorities for mental health research which should be incorporated by researchers and practitioners in their work with autistic adults. These included research to inform trauma-informed care approaches; societal approaches for inclusion and acceptance of autistic individuals; community-available approaches for self-management of mental health; evaluation of adverse mental health outcomes of existing interventions; and improvements in measurement of quality of life, social well-being, and other preferred outcomes in autistic adults.
