Growing Up and Growing Older with Developmental Disabilities

March is Developmental Disabilities Awareness Month (#DDAM22), organized to raise awareness about the inclusion of people with developmental disabilities in all facets of community life, as well as awareness about the barriers they face in connecting to the communities where they live. While there has been a lot of research and development to support children with these disabilities, recent efforts have focused on the experiences of people with intellectual and developmental disabilities (IDD) as adults and older adults. As people with IDD go through life, there could be opportunities to experience some of the same milestones as their peers without IDD: first jobs, first romantic relationships, first apartments or homes, promotions, building families, and even retiring.

We looked at resources from the NIDILRR community and elsewhere examining the life experiences of adults and older adults with IDD.

The NIDILRR-funded Rehabilitation Research and Training Center on Community Living and Participation‘s Impact series features in-depth articles, including evidence-based research on issues impacting people with IDD at different life stages and the direct support professionals who support them, as well as personal stories from the community. Check out these recent issues:

• Impact: Feature Issue on Retirement and Aging for People with Intellectual, Developmental, and Other Disabilities
• Impact: Feature Issue on Supporting Wellness for Adults with Intellectual and Developmental Disabilities
• Impact: Feature Issue on Sexuality and People with Intellectual, Developmental and Other Disabilities
• Impact: Feature Issue on Careers in The Arts for People with Intellectual, Developmental, and Other Disabilities
• Impact: Feature Issue on Supporting New Career Paths for People with Intellectual and Developmental Disabilities

The NIDILRR-funded Rehabilitation Research and Training Center on Employment of Persons with Intellectual and Developmental Disabilities conducts several research projects on competitive integrated employment and inclusive workforces. Many people with IDD experience barriers to finding and keeping jobs where they are part of a team that includes people with and without disabilities, where they can grow and learn new skills, and where they are paid a wage similar to their peers. Check out these resources:

• Research Summary: The impact of competitive integrated employment on economic, psychological, and physical health outcomes for individuals with intellectual and developmental disabilities
• Insights from families on meaningful work, supporting integrated employment pursuits, and pathways to employment.

The National Research Center for Parents with Disabilities focuses on the experiences of parents with disabilities, including barriers they face and strategies for adaptive parenting. Among their resources you’ll find:

• Advice and Facts for Mothers and Expecting Mothers with Intellectual Disabilities
• Advocacy and Support Tips for Parents on the Autism Spectrum
• Being Good Parents: A Guide for Parents with Intellectual Disabilities

The NIDILRR-funded Rehabilitation Research and Training Center on Health and Function for People with Intellectual and Developmental Disabilities (plain language summary of this project – PDF) looks at the experiences of people with IDD as they age and the barriers to good health and wellness they may experience. In plain language, they share What does it mean to be healthy?

Adults with intellectual and developmental disabilities have the right to live, work, learn, and otherwise interact with the community of their choosing. They have the right to make decisions about where they live, where they work, their health care, family planning, and more. The National Center for Supported Decision Making focuses on practices and policies that help people with disabilities to make their own life choices, with support from professionals, family members, and other as needed. 

• Learn what supported decision-making is, how it can work, and what you need to know as the decision maker, or the person tapped for support.
• Read stories of supported decision-making from the community.

Financial stability and independence are key markers of adulthood. The NIDILRR-funded project Financial Engagements as a Gateway to Community Participation: A Multi-Level Intervention Study examines the promise of ABLE accounts in increasing community participation for individuals with intellectual and developmental disabilities (I/DD) and cognitive disabilities.

• Learn more about financial empowerment

These are just a few examples of resources developed by the NIDILRR community and other agencies and organizations to support adults with IDD. To explore more, visit the NIDILRR Program Database for current projects on intellectual and developmental disabilities. You may also want to search our REHABDATA database to dive deeper into some of the research published by these and other projects, as well as the broader disability and rehabilitation research community. Contact our information specialists if we can be of assistance in your search!