Health Care for Individuals with Intellectual and Developmental Disabilities
Developmental Disabilities Health Care E-Toolkit Resources4
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 a condition characterized by significant limitations in both intellectual functioning (learning, reasoning, problem solving) and adaptive behavior (everyday conceptual, social and practical skills). One way to measure intellectual functioning is an IQ test. Standardized tests can also determine limitations in adaptive behavior. The condition originates during the developmental period, which is defined as before the age of 22.1 Some of the most commonly known causes of intellectual disability – like Down syndrome, fetal alcohol syndrome and fragile X syndrome, – happen before birth.2
Developmental disabilities are severe, chronic disabilities is attributable to a mental and/or physical impairments which manifests before age 22 and are likely to continue indefinitely. They result in substantial functional limitations in 3 or more of the following areas:
- receptive and expressive language
- capacity for independent living
- economic self-sufficiency3
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 can be 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
These disabilities reflect the need for individually planned and coordinated services and supports that are of lifelong or extended duration.
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 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
- Providing Quality Care for Adults with Intellectual and Developmental Disabilities | OptumHealth Education
American Academy of Developmental Medicine and Dentistry
Additional Training for Health Care Providers
Trauma Informed Care
- Supporting Children With Intellectual and Developmental Disabilities Who Have Experienced Trauma (National Child Traumatic Stress Network. Register with NCTSN for free access to content)
- Assessing Trauma in Individuals With ID (AUCD)
- Trauma-informed Behavior Planning for People with IDD– Webinar Recording sponsored by American Association on Intellectual Disabilities (AAIDD) 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 Behavioral Health Clinical Practice Guidelines
- Optum Clinical Policies
- 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
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.
4Content 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 www.vkc.mc.vanderbilt.edu/etoolkit/.