Health Care for Individuals with Intellectual and Developmental Disabilities
Developmental Disabilities Health Care E-Toolkit Resources3
The links below highlight just a few of the helpful resources available from the Vanderbilt Kennedy Center e-toolkit for Primary Care Providers: Health Care for Adults with Intellectual and Developmental Disorders.
- Communicating Effectively, Informed Consent in Adults and Preparing for Office Visits
- Patient Profile and Preventive Care Checklists for Adults
- Health Watch Tables by Specific Syndromes
Behavioral and Mental Health
Identifying the Health Needs of Individuals with I/DD
This site contains a variety of resources to assist health providers. To the left you will find different practice tools. In the middle key terms and resources related to supporting individuals with intellectual and/or developmental disabilities in your practice. On right we have included training and guidelines. Individuals with I/DD receive care from multiple providers and facilities. Coordination of care amongst providers is vital to support maximum well-being.
Intellectual disability is characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practice skills. This disability originates before the age of 18.1 Some common syndromes associated with intellectual disability include autism, Down syndrome, and Fragile X syndrome.2
Developmental disabilities are severe, chronic disabilities attributable to mental and/or physical impairments, which manifests before age 22 and are likely to continue indefinitely. They result in substantial limitations in > 3 areas:
- receptive and expressive language
- capacity for independent living
- economic self-sufficiency
The term “developmental disability” encompasses intellectual disability and also includes physical disabilities. A person with a developmental disability may or may not have a low I.Q. Some developmental disabilities are largely physical issues, such as cerebral palsy or epilepsy. Some individuals may have a condition that includes a physical and intellectual disability, such as Down syndrome for example.1 Additionallly, these disabilities reflect the need for individually planned and coordinated services and supports that are of lifelong or extended duration. (From 45 CFR 1385.3 definitions)
Home and Community-Based Services (HCBS) are types of person-centered care delivered in the home and community. HCBS programs address the needs of people with functional limitations who need assistance with everyday activities, like getting dressed or bathing. HCBS are often designed to enable people to stay in their homes, rather than moving to a facility for care. (CMS)
Person centered care is based on a holistic approach to health care that takes the whole person into account instead of a narrow perspective where the focus lies on the illness or the symptoms. The person-centered approach also includes the person's abilities, or resources, wishes, health and well-being as well as social and cultural factors. Find out more at the following link.
Rights of Individuals with I/DD - Federal and state laws define the rights of Individuals with I/DD related to healthcare decision-making. As a provider, it is important to be familiar with the guidelines and laws in the states where you practice.
I/DD training offering CE credits
American Academy of Developmental Medicine and Dentistry
Additional Training for Health Care Providers
Trauma Informed Care
- Trauma Informed Care Resource Library (National Association of State Directors of Developmental Disabilities Services - NASDDDS)
- Assessing Trauma in Individuals With ID (AUCD)
- Trauma-informed Behavior Planning for People with IDD– Webinar Recording sponsored by American Association on Intellectual Disabilities (AAID) and NADD
- Early Screening of Autism Spectrum Disorder: Recommendations for Practice and Research
- Screening Tools: STAR Center
- Optum Clinical Resources on Autism/Applied Behavior Analysis
- Optum Coverage Determination Guideline: Neurodevelopmental Disorders
- AACAP and APA Guidelines
- I/DD Self-Direction White Paper
- Information and Tools to Facilitate Self-Direction
- The National Task Group on Intellectual Disabilities and Dementia Practices
- Oral Health Care for Children With Developmental Disabilities
- Psych Hub Video Library
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) provides clinical criteria for I/DD conditions. This book is available for purchase in print or online.
3 Content based on the Developmental Disabilities Health Care E-Toolkit, a project of the Vanderbilt Kennedy Center for Research on Human Development, the University of Tennessee Boling Center for Developmental Disabilities and the Tennessee Department of Intellectual and Developmental Disabilities funded by the WITH Foundation at https://vkc.mc.vanderbilt.edu/etoolkit/.