Transition into Adulthood
Regardless of when a neurologic disorder is diagnosed, it has profound effects during adolescence. This is a time of great development for children, especially as it relates to moving toward independence from their caregivers, making school and career choices, building peer relationships, and maintaining self-esteem. It is critical during this time to have discussions about self-management with the youth to empower them to fully understand their disease and take ownership of its ongoing management. Such discussions highlight the need for youth, caregivers and providers to function as partners in care planning. Throughout the transition period, the views, desires, and feelings of the adolescent should be considered and person-centered planning approaches adopted. The youth should be encouraged to take an active part in meetings discussing his or her future, be fully informed about opportunities and choices, and have full access to all other relevant information, including medical records.
Transitioning from the pediatric to the adult health care system should be expected for all patients living with a neurologic condition. While it will vary amongst patients as to how that transition will look or when the transition will happen or even who the transition will involve, the central goal of starting the transition planning discussions early (before age 14 years) to ensure the youth attains his/her level of optimal independence should guide all transition planning processes. Patients and caregivers should feel empowered to initiate transition planning conversations with their provider so they are aware of the provider’s transition policy.
It is important for patients, caregivers, and providers to understand that transition planning should address the comprehensive needs of the youth’s life, including both the medical and social aspects. The following section provides information and resources that address these various components.
Advancing Transition in the Neurology Community:
Strategies for Families and Adult and Child Neurologists
Visit our Provider page to learn more about Child Neurology Foundation’s Transitions of Care efforts, including our consensus statement, The Neurologist’s Role in Supporting Transition to Adult Health Care, endorsed by the American Academy of Neurology (AAN), Child Neurology Society (CNS), American Epilepsy Society (AES), and American Academy of Pediatrics (AAP). The consensus statement was created by an independent panel of 13 interdisciplinary experts based on a review of research literature.
It includes five disease vignettes intended to illustrate how Eight Common Principles that define the child neurologist’s role in a successful transition process can be put into practice across the child neurology diagnosis spectrum: Generalized Epilepsy, Muscular Dystrophy, Fragile X, Tuberous Sclerosis Complex, and ADHD. The vignettes are available online through the full consensus statement.
All content was solely developed by the Child Neurology Foundation. The research is published in the July 27, 2016, online issue of Neurology®, the medical journal of the American Academy of Neurology and is available to the public at-large. Read the consensus statement on the Neurology® website.
Transition into adulthood has significant implications for the quality of life that young people with special health care needs and their families experience. The American Academy of Pediatrics (AAP) published a clinical report, Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home, which provides a recommended structure for how to best transition youth into the adult health care system. Experts from specific subspecialties, including neurology, are working to develop similar guidelines.
Comprehensive resources and information about the transition process are also available on the Got Transition website. Got Transition/Center for Health Care Transition is a cooperative agreement between the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health. Their aim is to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.
The Youth Transitions Collaborative is a 45+ member collaborative sponsored by the NYTC that provides expertise on transition planning, programming, and advocacy related to career counseling, school-to-work readiness, work-based learning (mentoring and internships), personal development and leadership training, and family education and support.
The Good 2 Go Transition Program (Good 2 Go) was founded in 2006 at SickKids with the aim of preparing all adolescents with chronic health conditions to graduate with the skills and knowledge needed to succeed in the adult-oriented health-care system. The Hospital for Sick Children (SickKids) is a health-care community dedicated to improving the health of children.
To learn how pediatric and adult health care differ, view this chart prepared by the Cristine M. Trahms Program for Phenylketonuria at the University of Washington: Pediatric vs. Adult Care: How Do They Differ?
Rights of disabled children, young people and families
Once a young person reaches 18, the law states that caregivers no longer have the right to make decisions on their behalf, as they are legally an adult. Young adults with neurologic disorders often still live with caregivers at the age of 18 and may need considerable continuing support. Some neurologic disorders affect a youth’s decision-making ability. For a youth who has intellectual disabilities, his or her health care transition often raises questions for health care providers and families about guardianship. These resources examine guardianship and other decision-making supports:
Got Transition Webinar: Understanding Guardianship and the Alternatives for Decision Making Support
Tina Campanella of Quality Trust for Individuals with Disabilities leads a discussion about the legal aspects of health care decision-making, prepared by Got Transition.
Guardianship and Alternatives for Decision-Making Support
Tips on decision-making for those with intellectual disabilities, prepared by the Quality Trust for Individuals with Disabilities.
National Resource Center for Supported Decision Making
This center, funded by the Administration on Community Living, is operated by Quality Trust for Individuals with Disabilities and the Burton Blatt Institute at Syracuse University.
Developing and Asserting Independence
The process of moving from adolescence to independent adulthood can be exciting but also holds many uncertainties and challenges along the way. This move to independence is usually gradual and support is required from family, friends and support services.
Moving into Adult Health Care: A Guide for Parents is a workbook with tips for parents about helping children to transition to health care independence, prepared by Kids as Self Advocates (KASA).
There are a number of issues for young people with neurologic disorders when asserting their independence. Independent living includes having choice and control over the support and equipment an individual needs and being treated as an equal for housing, health, education, and employment.
Here are a number of resources regarding education and employment during the transition period:
- HEATH Resource Center
An online clearinghouse on postsecondary education for individuals with disabilities and official resource site for the National Youth Transitions Collaborative.
- National Center on Secondary Education and Transition
A national resource center operated by Minnesota’s Institute on Community Integration that provides technical assistance and information to improve success for students with disabilities in secondary and postsecondary education, as well as employment, independent living, and community participation.
- National Secondary Transition Technical Assistance Center (NSTTAC)
A national technical assistance center funded by the Department of Education’s Office of Special Education that provides technical assistance and information to improve the postsecondary academic and functional achievement of students with disabilities.
A non-profit organization dedicated to improving educational and employment outcomes for individuals with disabilities. TransCen collaborates with local, state, and national initiatives to expand opportunities for youth with disabilities.
- Center for Workforce Development
A national resource center operated by the Institute for Educational Leadership that has helped private and public sector leaders promote career readiness and successful transitions to adulthood for all youth–with a special focus on youth with disabilities and disconnected youth–by increasing the capacity of and connections among all stakeholders in the workforce development system. The Center has also been involved in implementing innovative high-tech career-focused mentoring programs for all youth, including those with disabilities.
- National Collaborative on Workforce and Disability for Youth
A partnership of leaders in education, youth development, disability, employment, workforce development and family issues that is funded by the Department of Labor’s Office of Disability Employment Policy. NCWD/Youth offers a range of technical assistance services to promote success for all youth, including youth with disabilities, entering the world of work. The site houses numerous resources.
- Guideposts for Success
Provides resources to assist with school-based preparatory experiences, career preparation and work-based learning, youth development and leadership, connecting activities, and family involvement and supports.
- Individualized Learning Plans How-to Guide
Assists youth with college and career readiness and transition planning
For some families, the time of adolescence may bring feelings of grief over the reality that independent living will not be possible for the young adult with a neurologic disorder. These feelings are normal and should be acknowledged. While the goal of total independence may not be possible, the caregiver and child neurology team should work together with the youth to establish redefined goals that can help ensure he reaches his full potential and maximum level of independence in every area life.
A young person with a neurologic condition may require support when starting to develop independence. This particularly applies when trying to access benefits, employment, or services.
An advocate is someone who can act on behalf of the youth when required. The advocate can listen to, discuss with, and inform the young person about their choices and help them make decisions about their lives while providing emotional support.
The Arc is a national membership organization with nearly 700 state and local chapters advocating for individuals with intellectual and developmental disabilities.
- The Arc’s Health Meet Initiative
- The Arc’s School-to-Community Transition Initiative
- The Arc’s Self-Determination Scale
Young people with neurologic conditions should be encouraged to be their own advocate. A self-advocate is someone who speaks up for himself. Self-advocates ask for what they need and want and try to have as much of a say as possible in making their own life decisions.
How to Advocate for Your Health and Health Care
An activity guide to assist youth in preparing for adult health care, prepared by The Boggs Center on Developmental Disabilities at Robert Wood Johnson Medical School.
Youth Action Council on Transition (YouthACT)
A national project of the National Collaborative on Workforce and Disability for Youth to help youth with disabilities develop skills and knowledge in leadership and advocacy so they can speak up about what all youth need to be successful during transition to adulthood.
Caregivers may find it difficult to ‘let go’ of their child as they mature. However, it is important to encourage your child to begin to engage in activities of increasing independence such as going out with friends, even if they need additional support to do so. This can be a difficult time for caregivers if their child does not possess confidence or self-determination to make right choices with regard to at-risk behaviors.
Read these caregiver stories from Got Transitions for ideas and encouragement:
- The Gift of Time: The Role of the Community in Youth Transition [PDF]
Eileen Forlenza talks about the importance of community support as her daughter transitioned to adulthood.
- Dylan Marcy’s Reflections [PDF]
Dylan Marcy reflects on chronic conditions and identity.
- Ben’s Transition Story: An Evolving Journey [PDF]
Barbara Katz talks about her son’s transition to independence.
- The Transition Tango [PDF]
Wanda P. Felty discusses working with her daughter to find adult doctors.
- Transition Baby Steps That Lead to Major Milestones: It Starts with YOU! [PDF]
Cristin Lind talks about teaching your children basic health care skills.
- Transition in Advocacy: Confessions of a Controlling Mother [PDF]
Janet DesGeorges describes the challenges in changing to an adult hospital unit and gives tips on being a parent advocate.
- Transition Story [PDF]
Anna Cyr discusses helping her daughters learn self-care skills.
Supporting Choice, Autonomy
Young people with neurologic disorders have aspirations and dreams like any other young person. Supporting them in moving towards their goals can make a huge difference to their happiness and wellbeing. Many young people with neurologic disorders lead active lives and, with the right support, all can reach their full potential.
As a caregiver, it is important to support choice and autonomy by:
- Understanding and appreciating the youth’s achievements.
- Ensuring the young person takes as much control as possible in decisions that involve them.
- Providing as much information for the young person about their options, services or activities as they want or need.
- Taking time to ensure they understand the decisions they have made.
- Ensuring they are involved in decisions that affect their care (for example, how to refill their medication, what time they go to bed, and what activities they participate in).
- Supporting choices consistent with the young person’s character.
- Supporting choices consistent with the young person’s culture and heritage.
- Cultural Competence: Essential Ingredient for Successful Transitions of Care[PDF]
A tool providing strategies and resources to enhance professionals’ capacity to deliver culturally competent services during transitions of care, prepared by the National Transitions of Care Coalition.
- National Center for Cultural Competence
The NCCC is a national resource center, operated by the Georgetown University Center for Child and Human Development, that provides training, technical assistance, and consultation related to implementing and evaluating culturally and linguistically competent service delivery and support systems.
- Youth and Family Perspectives on Transition
NCCC has developed a web–based feature on providing culturally and linguistically competent health transition services for youth with special health care.
Adolescence is a time of great physical, emotional and psychological change. The changes to a young person’s body and the accompanying sexual feelings that may develop during adolescence can be welcomed by young people as a sign that they are developing into an adult. But some adolescents may find these changes difficult to cope with. While discussing sexuality can bring about feelings of embarrassment or awkwardness for youth, it is important that providers speak directly with adolescent patients about their sexual health questions and concerns. If there are intellectual disabilities present, these conversations should still occur, but with the involvement of the caregiver.
Instructional manual for caregivers of youth with developmental disabilities on sexuality across the lifespan, sponsored by the Administration on Developmental Disabilities and the Florida Developmental Disabilities Council.
Transition Resources for Teens and Parents
Child Neurology Community Conversations from the Voices of the Provider, Caregiver, and Advocate
Each year, Child Neurology Foundation hosts several educational webinars that address disease-specific issues from the provider, caregiver, and advocate perspectives to provide the child neurology community with a forum for bringing partners’ perspectives together. Pediatric neurologists provide clinical considerations related to the disease-specific issue, caregivers share their experiences and advice, and organizational advocates highlight current resources available to help support both clinicians and families.
Transitioning to Adulthood: Recorded on October 7, 2016
Transitioning from the pediatric to the adult health care system should be expected for all adolescents living with a neurologic condition. While it will vary amongst adolescents as to how that transition will look, when the transition will happen, or who the transition will involve, the central goal of starting the transition planning discussions early (before age 14 years) is to ensure the youth attains his/her level of optimal independence should guide all transition planning processes.
Join experts from the child neurology community for a 75-minute webinar, Child Neurology Community Conversations from the Voices of the Provider, the Caregiver, and the Advocate: Transition into Adulthood, that will outline the 8 common principles for the neurologist’s role in transitioning youth to the adult healthcare system and how youth, caregivers, and advocates act as equal partners in care to ensure a successful medical transition (as published in Neurology® ).
In this webinar you will learn:
- Why transition and transition planning are important for youth/ families
- The 8 common principles that define the neurologist’s role in transition
- What child neurologists want youth and caregivers to know about transitions
- Examples of successful transitions to emulate
- Readiness tools used by providers and how these tools benefit youth, caregivers, and the child neurology team
- How youth and caregivers can use the 8 common principles to set expectations, and other helpful resources
- What youth and caregivers want providers to know as they approach transition planning
SmoothMovesYHT is a teen health promotion website. The information on this site is developed from evidence informed guidelines (what the experts say), transition research (what the research scientists discovered), and recommendations from organizations (important expert groups) such as the National Alliance to Advance Adolescent Health, Society for Adolescent Health and Medicine, the U.S. Maternal and Child Health Bureau, and the American Academy of Pediatrics.
The Good 2 Go Transition Program has many tools and interventions available online to help youth and their families become better prepared for the transition to adult life. Their menu of tools designed for young people and their families is found on their Transition Tool page. Many of these can be accessed or downloaded and used on your own right now such as:
The Children’s Hospital of Philadelphia (CHOP) runs several programs to support patients who are getting ready to transition to adult healthcare and adult life.
Transition to Adulthood Program Health Resources: A robust compilation of documents and videos for teens and caregiver.
Transition to Adulthood Program Event Listing: Live interactive online events for teens.
REACH: These free programs, called REACH (Rapport, Empowerment, Advocacy, through Connections and Health), are for young people with chronic conditions and their parents.
REACH’s mission is to prepare youth 14 to 24, with special healthcare needs, for a successful transition into adulthood by providing peer support, guidance and resources.
- REACH for College – These sessions focus on the medical and social transitions necessary to plan for and navigate college life successfully.
- REACH for Independence – In these sessions, caregivers and youth will participate in activities and discussions about learning to navigate the adult healthcare system and promote healthcare independence.
- REACH for the Future – These are workshops for young people with an autism spectrum disorder. Parent and self-advocate mentors will share their experiences and advice on planning for adult life.
- REACH Mentors – Undergraduate and graduate student mentors are invited to share their experiences about living successfully with a chronic illness during college.
- REACH Your Potential – This is a workshop for young people with an intellectual disability. Parent and self-advocate mentors will share their experiences and advice on planning for adult life.
- CHOP Career Path – This program helps young adults with chronic illness and/or disabilities bridge the gap between high school and the working world.
- CHOP-Penn Transition Program for Digestive, Liver and Pancreatic Medicine – This program works closely with you and your child to prepare you for the transition from pediatric to adult care.
This Health Care Transition Workbook will help you and your family think about your future and identify things that you are doing now to be independent in your health care. This workbook will also help you figure out what you and your family need to do to assure that your transition from child-centered (pediatric) to adult-oriented health care and to other aspects of adulthood goes as smoothly as possible.
CanChild is housed within the School of Rehabilitation Science at McMaster University and is the hub in an academic network of international scientists that conduct applied clinical and health services research concerning children and youth with a variety of developmental conditions.