There are many transitions in the life of a child impacted by disabilities. One transition that is often set on the back burner is the medical transition from pediatric to adult care. This transition can be significant for a young adult with developmental or intellectual disabilities because they then become the individual responsible for their own care and for communicating their needs to their new physician, who may or may not have worked with an individual with an intellectual disability before.
It is important for these families to check with their child’s pediatrician at or around age 15 to see if their practice has transition planning and a physician that they work with. If there is not a system already in place at your doctor’s office, you’ll need to do the work yourself. The key for any parent or guardian is to stay informed and to work with your teen on how to communicate with the medical staff at the clinic. If you have a young adult that is non-verbal or has very little language mastery, you can make a huge difference in youth participation by using a them to say how they are feeling, what they need, and any questions they may have that can be worked out ahead of time. A good tool to bring to each appointment is an information pager that says who they are, ID numbers, insurance numbers, what their medical conditions are, what their medications are, unique issues to watch out for, and the concerns and/or reasons for the visit is also a good tool to bring to each appointment. To help lessen anxiety and help with communication, talk with your youth ahead of time, practice what to talk about, what questions they might ask and what the appointment is going to look like. There are tools online that help with communication and getting ready for a doctor’s visit. One very good tool is at http://hctransitions.ichp.edu/gladd/ They suggest using an acronym “GLADD” to help individuals remember important ways of letting medical staff know what they need and what is important.
GLADD stands for:
G(ive) – Give information about how you are feeling and what you have done to stay healthy
L(isten) – Listen carefully to your health care providers and learn to
A(sk) – Ask your doctors the questions you have about your health
D(ecide) – Decide at every visit with the healthcare professional decisions need to be made about what to do next
D(o) – Do your part in following the plan.
This web site has a lot of interactive tools and videos that are great for modeling with youth and helping them hear from others in their situation. Other such tools can be found at: http://healthytransitionsny.org and at http://cshcn.org/teens/
If your teen or young adult feels the need for support while in the doctor’s office they will need to sign a release giving their guardian or caregiver permission to be a part of the office visits, allowing you to to receive information concerning any treatment plan. From age 18 on, the young adult will be asked to sign off on any medical treatment or services they may require, including medication, surgeries and therapies. Because of this, it’s important to research adult providers, and even visit their offices, to see if they have worked with individuals with complex needs, have a good referral process, and understand the complexities of working with adults with developmental/intellectual disabilities. Just as you were an advocate for your child in the school system, it’s just as important to stay connected in the medical system as well.