When we talk about transition issues for young adults with disabilities we often first think about the transition from school to work or from living at home to living independently. There is however, another important area of transition to think about when working with young adults who are transitioning to adulthood; this is the transition from pediatric care to adult healthcare providers.
Many youth with disabilities and/or complex medical issues have developed strong collaborative ties with pediatric care providers over many years of working together. Unfortunately, as young adults approach adulthood these pediatric providers are not always able to continue to provide this level of care to older patients. Although I know of many pediatricians that have continued to work with certain patients well into their 30’s, because of the strength of the relationship, this is often not practical from a regular practice perspective. This means that young adults need to plan for transitioning to an adult care provider that they can be comfortable with and who can continue to work collaboratively with them to address sometimes complex medical issues that the provider may not have a lot of experience with.
To help young adults, their families and other support personnel such as CIL staff help navigate this healthcare transition, The National Health Care Transition Center has created the Got Transition? website.
In their own words:
“Got Transition? is a national resource for health care professionals, families, youth, and state policy makers focusing on a young adult’s transition from pediatric to adult health care. This site serves as the basis for an information exchange about health care transition, particularly as pertaining to youth with special health care needs.
Transition tools and tips and other resources are available under each of the main categories of Youth, Family, Providers and States. These resources will grow and develop so visit us often.
Why This? Why Now?
Less than half of US youth with special health care needs receive the health care transition supports and services they need, according to the 2005-06 National Survey of Children with Special Health Care Needs.
Health care professionals, youth and families each have essential roles to play in improving a youth or young adult’s transition from pediatric to adult health care. Positive transitions begin when youth and families are prepared for change and when pediatricians and adult primary care professionals have access to tools and concrete methods to address barriers and improve care for youth and young adults.”
When you visit the Got Transition? website be sure to check under the Youth tab for the resources section. My favorite resource listed is the “Healthy Transitions” link at the top of the list that takes you to an interactive site with video clips, transition planning tools, and even a social networking feature for young adults.
We would love to hear about what your center has done in the area of supporting young adults in the healthcare transition process. Please add a comment about your work in this area or questions you have for others about what they have done.