As a natural part of growing up, adolescents becoming adults must become responsible for their health care. Taking responsibility for one’s own health care, as developmentally able, is part of becoming independent from one’s family and finding a place in the adult community.
However, youth with special health care needs, chronic illnesses, physical or developmental disabilities may find this difficult. If the adolescent needs to leave a pediatric provider, finding an adult health care provider trained in pediatric conditions may be a challenge. An adolescent who has been receiving care from a family practitioner may want to stay with that family practitioner but find it too easy to continue to function in a child’s role. Either way, young people may be uncomfortable in the role of an adult health care consumer. And families may have trouble letting go of the health care services which are familiar and comfortable.
Health Care Transition is a process that helps youth with special health care needs identify the knowledge and skills they need to manage their chronic health condition as well as educates and supports them to become as independent as possible.
Transition is a period of preparation before assuming adult health care responsibilities and before transferring to an adult provider. The most common recommendations among transition experts are that transition should start early (at the minimum age of 12) and should involve the youth, their parents, their pediatrician and a primary care doctor, so that everyone is included in the discussion of the expectations and goals for this process.
NHFV has designed this page to help smooth the transition process. We hope to make this a resource of information, materials, and links to help with health transition challenges.
Healthcare Transition Matters Podcast Series
Have you heard about health care transition, but aren’t really sure what it is about?
NH Family Voices, through its Youth Healthcare Transition Services Project, has created a series of podcasts to answer your questions. Throughout the series you will hear a variety of perspectives, including youth, parents, providers, community agencies and project staff who are working to improve health care transition for all youth and families. Listen in to hear why healthcare transition matters!
Raising the Self-Determined Child
Making decisions is more than making a choice. As a parent, you can support your child with a disability to learn and practice the process of decision-making. This short booklet on self-determination skills gives helpful tips on helping you child develop skills early in life that can provide a strong foundation for success in adulthood.
Supported Decision Making for Youth Transitioning to Adulthood
Supported decision making is an alternative to guardianship through which people use friends, family members and professionals to help them understand situations and choices they face, so they may make their own decisions without the “need” for guardianship. It is an emerging approach to providing decision-making assistance without imposing any long-term legal limitations on rights or personal liberties. (Blanck & Martinis, 2015). This NH Family Voices flyer explores this and outlines the legal tools to support decision-making.
How to Make a Supportive Decision Making Agreement
Supported Decision-Making, or “SDM,” is a way to get help making choices. Supported Decision-Making means that you make your own choices. You can choose family, friends, or staff who you want to help you make your choices. The people who will help you understand and make your choices are called “supporters”. Supporters are there to help you. You are the one who makes the final decision. You are called the “decider”.
This book will help you start using Supported Decision-Making. You should read and talk about this book with people you trust. This book has questions and activities that will help you think about how you want to use Supported Decision-Making. It will take a while to read through this book and do all of the activities. You might spend a month or more working on it. That’s ok! Doing Supported Decision-Making takes time.
The Take Control of Your Health Series is a set of resources to educate teens and young adults about taking an active role in managing their healthcare. The four card set covers the topics of managing appointments, medications, health insurance and health information. Each subject card outlines how to get started, important facts and what questions to ask to get the information needed to become more independent. Parents can use these tools to start a dialogue with kids about the transition from pediatric to adult healthcare. Tweens and teens will find the cards useful as a starting point for gaining more independence and practitioners can distribute them to the young adults and families they work with.
Take Control of Your Health: Managing Your Appointments – Managing your appointments is the first step to healthcare independence. Here’s how to get started.
Take Control of Your Health: Managing Your Health Information – What do you need to know to manage your health information?
Take Control of Your Health: Managing Your Medication – Learn about the ways you can remember your medication.
Take Control of Your Health: Managing Your Insurance – Insurance can be confusing. But learning about it is another step in managing your health care.