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Transition Resources

General Transition Resources

Got Transition

Got Transition aims to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.

It is a program of the National Alliance to Advance Adolescent Health, and includes resources for health care providers, youth and families, and researchers and policymakers. 

 

Transition Toolkit for Youth with Disabilities (Vermont Family Network)

This comprehensive toolkit on transition, developed by Vermont Family Network, includes the following topics:

  • Adult Services for People with Developmental Disabilities  
  • Changing Role of Parents
  • Education Options and Programs in Vermont
  • Employment and Other Options
  • Flexible Pathways/Act 77/Dual Enrollment
  • Going to Work and College (SSI)
  • Guardianship
  • Laws
  • Parent as Partners in Transition Planning
  • Preparing for Postsecondary Education: Know Your Rights
  • Planning Tips for Transition Age Youth and Their Families
  • Self-Advocacy, Awareness and Disclosure
  • Supplemental Security Income (SSI)
  • Resources
Transition Toolkit (New England Consortium of Metabolic Programs)

The New England Consortium of Metabolic Programs offers access to the Boston Children's Hospital Transition Toolkit

Transition to Adult Healthcare - Clinician's Policy; Explanation for Families

This policy was developed for staff at Metabolism Clinics in the New England Region who are caring for patients aged 12-17 with metabolic disorders, but may be of interest to others. 

  • Structured around best practices in enabling patients to transition successfully to adult health care
  • Includes information about guardianship, healthcare proxies, parent and patient visiting policies, inpatient visits, medical records, and our Transition Toolkit for teens, among other resources

The Explanation for Adolescents, Young Adults and Families helps families know what to expect as they transition from pediatric to adult healthcare. 

Both of the above were developed by Children's Hospital Boston. 

Next Step, Inc.

Next Step, Inc., located in Boston, Massachusetts, offers free year-round programming for young people coping with chronic life-threatening illnesses during their transition to adulthood and into an adult healthcare system.They provide in-person support, community, music therapy, education and resources.

Check out their exceptional programs for:

Transition Planning for Adolescents

A pdf for Transition Planning for Adolescents with Health Care Needs and Disabilities: Information for Families and Teens

Transition to Adulthood

The National Dissemination Center for Children with Disabilities compiled a quick comprehensive summary of some topics central to transition 

Transition Videos

Transition Videos - Nemours/Alfred I. duPont Hospital for Children developed four transition videos available on Youtube. The hospital worked together with community partners and youth/young adults with disabilities and their families. The videos are on the topics of Legal/FinancialResidential, Vocational, and Medical Self-Management. The videos were made possible by a grant from New York/Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC).

Health Care for Adults

The Vanderbilt Kennedy Center offers a Toolkit for Primary Care Providers on Health Care for Adults with Intellectual and Developmental Disabilities 

Suicide and Depression Awareness for Students

This expert-driven guide to understanding and preventing suicide among students is relevant to include here because depression is an important topic for people with chronic disease. 

Key elements of the guide include:

  •  An in-depth Q&A with psychiatry expert, Dr. Schlozman
  •  A comprehensive overview of the connection between mental health, depression and suicide
  •  Warning signs of suicide and advice for students who are experiencing or know someone who is displaying these signs
  •  Help and resources for students struggling with depression

This resource was developed by LearnPsychology.org, a resource for students considering going into the field of psychology. 

College Support for Students with Disabilities

College Support for Students with Disabilities is a guide developed by the Center for Online Education. It outlines legal rights, shows where and how to find assistance on campus, and provides an extensive list of websites, apps and software resources designed for students with disabilities.

Specific resources are avilable for:

  • hearing impaired
  • visually impaired
  • physical disabilities
  • dyslexia
  • ADHD
  • autism spectrum disorders

Condition-specific

Transition Checklists

The Vanderbilt Kennedy Center Toolkit for Primary Care Providers on Health Care for Adults with Intellectual and Developmental Disabilities offers transition checklists for 

Making Sense of Special Needs Planning (Cornelia deLange syndrome)

For information on transition strategies for adolescents and young adults with Cornelia deLange syndrome (CdLS), see the Winter 2013 newsletter from the CdLS Foundation: Making Sense of Special Needs Planning.

Kabuki Syndrome Network - Transition to Adulthood

"The years of transition from school to adulthood are difficult for everyone, but especially for young people with Kabuki Syndrome. Our young adults leave the structured environment of school and go out into the community to face its maze of public and private agencies. These agencies often have long waiting lists for services with different eligibility criteria."

Read more, inlcuding hints for parents, videos, aticles, and personal accounts.