Got Transition will use what is learned from practice level implementation, youth and family networking, and policy research and analysis to improve the access to high quality health care transition services.

Family Resources

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To help patients, families and caregivers understand the many important issues they face prior to and during transition, Nemours has developed a series of videos now available on YouTube. The videos, made possible by a grant from NYMAC (New York/Mid-Atlantic Consortium for Genetics and Newborn Screening Services), cover four main areas:

Legal/Financial: Addresses health care power of attorney, health surrogacy laws and legal guardianship, estate and long-term planning, and special needs trusts.

Residential: Discusses the variety of residential programming available to people with disabilities in the adult world and how to make sure young adults are registered with the right services in their state.

Vocational: Offers guidance to make sure young adults get the most out of high school and are aware of their options, including post-secondary education, job training programs, day programs and competitive employment. Vocational rehab services, adult disability resource centers and family-to-family information networks are also addressed.

Medical Self-Management: Describes ways for young people to be more involved as they move from the pediatric to adult health care world, including what skills they will need to be successful and how being an adult patient will be different from their pediatric experience.

Websites, Videos, PDFs, and Other Documents to Check Out

 

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.

Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

Click on their interactive map to find your states Family Voices organization.    

This brief provides a broad outline of decision making support options, both informal and legal that may assist a young adult with an intellectual difficulties.  It also provides resources to further explore this issue as well as links to organizations that have expertise in guardianship and decision-making supports.  

This Got Transition brief provides preparation tips and resources for young adults who are college-bound and who may have a chronic disease or disability. 

The Denver Learning Collaborative has developed two checklists which providers might use to help their young adult patients plan ahead and think about their health care needs as they transition to college. There is one designed to be used with a young adult patient and one to be shared with the parents of a young adult.

The new health reform law offers several benefits for young adults. This three-minute video outlines these benefits, such as allowing young adults to remain on their parents' health plan until they turn 26. Featuring Sara Collins, vice president for the Affordable Health Insurance Program at The Commonwealth Fund. 

View video: Health Reform for Young Adults Up to Age 26 (3:01)

Journey to Adulthood a Transition Travel Guide is designed to be used by ANYONE, ANYWHERE, ANYTIME.   The authors have learned over the years that basic transition information does NOT change. Young people and their families must negotiate complex transitions as they move from pediatric to adult health care, school to work, and into the adult world healthy and ready to live as independently and inclusively as possible.  

Journey to Adulthood A Transition Travel Guide Resources for Roadblocks companion booklet

What does change on this journey are the services and resources.

Developed by: Shriners Hospital for Children, Lexington in Collaboration with the Kentucky Commission for Children with Special Health Care Needs and the Human Development Institute at the University of Kentucky

Mental Health Tips for Teens includes information for youth who are graduating from high school. It includes information about health care and other transition issues as they consider plans for life after graduation.

This guidebook is for young people living with HIV, their parents and caregivers, and the health professionals who work with them.

This series of videos produced by the National Center for Medical Home Implementation (NCMHI) provide information about the essential components of medical home.  Since transition services is one of the components of a medical home, a selection of videos dealing with transition and with a parents role in preparing their child for transition are featured here. 

In these two videos, families are urged to ask questions and partner with their child's primary care provider.  When parents do ask questions and are actively involved in their child's care, they are role models to their children.  From whatever age seems appropriate (age 12 is a good place to start), the child should be encouraged to do the same. As they become teens and young adults and begin to transition to adult health care, they too will have learned to ask questions and be actively involved in their own care.

These two interviewees answer the question: "What advice do you have for patients and their families to help them feel empowered to ask questions and partner with providers in their care?"

Brad Thompson

Eileen Forlenza

Here, Eileen answers the question, "Why is it important for primary care providers to help families prepare to transition from pediatric to adult care?"

Eileen Forlenza

Please link to NCMHI to view the entire series about medical homes. It offers more useful information for families who are wanting to be a respectful partner in their child's health care.

“The Arc” for people with intellectual and developmental disabilities, The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

The Office of Adolescent Health in the U.S. Department of Health and Human Services has launched a new information-rich website on adolescent health issues, including physical, mental and reproductive health, substance abuse and healthy relationships. The website at http://www.hhs.gov/ash/oah  features national and state factsheets, information and tips for parents and adults about talking with adolescents, research summaries, adolescent health resources from across federal agencies, opportunities to catch up on the latest news in adolescent health and more!

Doors to colleges are opening for people with intellectual and other developmental disabilities in many different ways all over the country. This website is designed to share what is currently going on, provide resources and strategies, let you know about training events, and give you ways to talk to others.

Think College provides resources and tools for students, families, and professionals provides information for transition aged students as well as adults attending or planning for college.

 

U.S. Department of Health and Human Services:  Administration for Children & Families:  State Protection and Advocacy Agencies, find your State Protection and Advocacy organization and learn about your states individual State Protection and Advocacy Agencies and resources.

Since teens become adults, legally, at age 18, parents should know that they could be kept out of the loop in their health care, among other things, unless they get some legal documents drawn up. Learn More