This site provides resources for navigating the transition from pediatrics to adult medical care. It includes details about finding a new provider, making decisions about how, when, and with whom to share health information, and how to transfer health care records to new providers. It also outlines some helpful information about health insurance. It is also available in Spanish. Some areas to highlight in their resources page include relationships, sexual health, and pregnancy prevention, mental health and transition, employment, education, and independent living transitions.
Think College is a helpful page for researching college-level education options for young people with intellectual disabilities and their families. It provides a state-level policy and activity breakdown as well as resources for supports while in school/in the application process. This would be great to look at if you want to get more involved with inclusive education policy or if you are in the process of finding the right post-secondary education option for yourself or your family member.
Pacer provides opportunities for people with intellectual disabilities including events, summer camps, and educational resources throughout childhood and young adulthood. Some helpful areas include information about housing, children’s mental health, transition and employment, and inclusive recreation groups.
The Arc is a national organization with over 600 chapters throughout the country. It helps provide a community and facilitate access to supportive resources for adults with intellectual or developmental disabilities. It has several different focus areas including advocacy, housing, travel, healthcare access, employment and planning for future changes, among other useful topics.
This page helps with navigating the decision about whether you or your child will need a guardian to assist them in adult life. It outlines potential alternatives, benefits and drawbacks, and the legal ramifications of guardianship.
Below is a collection of resources with more information about the effects of extremely premature birth on learning, behavior and development.
POLICIES AND PROCEDURES FOR THE DEVELOPMENT OF PUBLICATIONS FROM THE ELGAN STUDY: Information on using ELGAN data to publish.
National Institute of Neurological Disorders and Strokes