Intellectual and Developmental Disability (IDD)

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The number of adults with I/DD over the age of 60 is steadily increasing and by 2030; the number of adults with I/DD aged 60 and older is projected to reach 1.2 million people.² The typical aging process, which includes physical, cognitive, functional, and behavioral changes, as well as changes to one’s social and emotional functioning, may manifest earlier and in a different way for someone with I/DD.³ These differences may raise unique challenges for clinicians, health plans, and providers who are engaged with people with I/DD and their families and caregivers. Resources for Integrated Care has designed numerous resources to support health plans and providers as they care for people with I/DD as they age.

² Heller, T. (2017). Service and Support Needs of Adults Aging with Intellectual/ Developmental Disabilities: Testimony to the U.S. Senate Committee on Aging. https://www.aging.senate.gov/imo/media/doc/SCA_Heller_10_25_17.pdf.

³ Massachusetts Department of Developmental Services (DDSO) in collaboration with the University of Massachusetts Medical School, E.K. Shriver Center (May 2017). Aging with Intellectual and Developmental Disability (IDD), 1(17). Retrieved from http://shriver.umassmed.edu/sites/shriver.umassmed.edu/files/CDDER/QINA%20Aging%20with%20IDD%20finalv2%20taggged.pdf.

Individuals who are dually eligible for Medicare and Medicaid are more likely than other Medicare beneficiaries to have a mental health diagnosis as well as other complex and chronic conditions.⁴ Approximately 50 percent of adults aged 18 to 64 who are dually eligible report experiencing symptoms of a behavioral health condition in the past year, compared to only 14 percent of adults aged 18 to 64 who are not dually eligible.⁵  Additionally, it is estimated that 30-35% of people with I/DD have a psychiatric disorder.⁶

Resources for Integrated Care has developed resources for providers and plans supporting individuals with dual diagnoses of behavioral health and chronic conditions. These resources include promising practices and experiences from providers in the field to support the delivery of integrated care, to ensure that care is tailored to the needs of these individuals and health disparities are alleviated.

⁴ Medicare-Medicaid Coordination Office. (2018). [Fact Sheet] People Enrolled in Medicare and Medicaid. Retrieved from https://www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/Medicare-Medicaid-Coordination-Office/Downloads/MMCO_Factsheet.pdf.

⁵  Substance Abuse and Mental Health Services Administration. Center for Behavioral Health Statistics and Quality. The CBHSQ Report July 15 2014. Retrieved from https://www.samhsa.gov/data/sites/default/files/SR180/sr180-dual-eligibles-2014.pdf.

⁶ National Association for the Dually Diagnosed. Information on Dual Diagnosis. Retrieved from http://thenadd.org/resources/information-on-dual-diagnosis-2/.

People with I/DD are more likely to experience behavioral and physical health comorbidities, and as a result may be more likely to experience pain. Self-reporting is often used to assess pain but people with I/DD can experience challenges with self-reporting pain or exhibit differences in how they express pain.⁷

There are important considerations for providers when assessing pain in people with I/DD, including how medications sensitize people with developmental disabilities to pain and how to manage pain in various ways. Resources for Integrated Care has developed resources that explore how pain is assessed and managed in people with I/DD.

⁷ Baldridge, K. H. & Andrasik, F. (2010). Pain Assessment in People with Intellectual or Developmental Disabilities. American Journal of Nursing, 110(12), 28-35.

Among individuals who are dually eligible for Medicare and Medicaid and under the age of 65, 2.5% have autism spectrum disorder (ASD).⁸ ASD is a group of complex neurodevelopmental disabilities that affect social communication, sensory processing, and scope of interests. These may impact the care management needs of adults with physical disability that are on the autism spectrum and may result in health care disparities.

Compared to adults without autism, those on the autism spectrum experience greater unmet health care needs, greater emergency department use, lower use of preventative care services, lower satisfaction with participant-provider communication, and lower health care self-efficacy.⁹ Adults with ASD may also experience fear and anxiety, sensory issues, and difficulty communicating with providers, which can result in additional barriers to accessing health care services.¹⁰

Resources for Integrated Care has developed resources to support providers in understanding the basics of autism and strategies to ensure the care management needs of those with ASD are met.

⁸ Centers for Medicare & Medicaid Services, Office of Minority Health. Autism Spectrum-Disorder (ASD) Disparities in Medicare Fee-For-Service Beneficiaries Data Snapshot; February 2021. Retrieved from https://www.cms.gov/About-CMS/Agency-Information/OMH/Downloads/OMH_Dwnld-DataSnapshot-Autism.pdf.

⁹ Nicolaidis, C, et al. (2013) Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. J Gen Intern Med. Jun; 28(6):7610769.

¹⁰ Raymaker, DM, et al. (2016) Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism 21:8 972-984.

People with I/DD frequently require medications for physical needs as well as behavioral needs. However, there are important considerations when determining the appropriate medications to prescribe.

Resources for Integrated Care has developed a series of resources that look at various pharmacology options for people with I/DD, including strategies for monitoring the effectiveness or ineffectiveness of prescribed medications. These resources:

• Specifically focus on medications and forms of medications often prescribed for people with I/DD, and are designed for social workers, counselors, nurses, and other health professionals; and
• Promote integrated, coordinated care for people with developmental disabilities by exploring unique treatment options and practical strategies for supporting pharmacology options among people with I/DD.