Transitions aren’t always easy. The question of how you help a child move from the sheltered world of childhood and adolescence to the world of independent adult life is a struggle for all parents. If you have ever tried to teach your teenager how to do laundry you’ve gotten a glimpse into the difficulty of the transition process. For kids with developmental disabilities and on-going childhood illnesses, this leap towards independence often results in much more than shrunken clothes and all white shirts dyed pink. These young adults can face inadequate care and the struggle of on-going health issues on their own.
Time and time again, Doctor Debbie Badawi, Chief of the Child and Adolescent Health Unit at the Maryland Department of Health and Mental Hygiene (DHMH), has seen kids with developmental disabilities develop severe health issues because they left the nest of childhood services and couldn’t navigate the maze of adult health options. Working with her office and in conjunction with the Parents’ Place of Maryland, the DHMH created a Learning Collaborative to combat this problem.
Badawi and her team realized they needed to start early to create an on-going conversation about transitions with the kids who were going to need to know how to cross that bridge. The team began working with pediatricians getting them to encourage patients with developmental disabilities and childhood illness like epilepsy, sickle cell and congenital heart disease to think about becoming involved in advocating for their own healthcare.
Badawi explains, “We encourage providers to create a policy on transition for their office so it is clear to the kids what they need. We want kids and families to know which medicine they need and why the need it.” Timing is everything. Badawi continues, “we need to make clearthat separation is at age 18 or 21. Waiting until they are 17 1/2 is too late. By age 14 they need to have a transition readiness assessment. These plans are online and they give the doctors, the kids and the families a clear picture of what they need to work on to get ready. Kids need to know how to make appointments to see a doctor and what to do when medication is running out.”
Badawi has seen the results of not being ready. “What happens as the kids who are not properly transitioned leave the world of pediatric care and move into adult care is that they are not taking care of themselves. This lack of preventative care is often sending them to the emergency room.” Preparation is key. It is not just about finding a new doctor. There are issues of insurance and consent. After age 18, parents need written consent to be informed of their child’s medical records and health needs. “Start the process early,” Badawi advises.
Badawi and her colleagues have also been working to encourage pediatricians to implement developmental screenings as part of routine visits for very young children. Many children are identified as needing services much later than age two when so much can be done to help address challenges.
Many doctors were hesitant at first. Much of the hesitation had to do with logistics. Who would administer the screenings? How could they fit it into their caseloads? Rather than forcing a solution on the doctors, Badawi simply asked them to reflect on what the barriers in their practice were that prevented them from doing their own developmental screenings. “A big part of it was just supporting them and giving them structure to let them discover how they could make it work.” The results were outstanding for the doctors that participated in the program. The rates jumped from 65% of children screened to 95%. Another boost was given by the Parent Partner program they created. Parent Partners help guide other parents through the process. Many times parents of kids with special needs are dealing with multiple issues. They might be juggling issues of living arrangements, unemployment and the need for assistance programs such as food stamps. Parent partners were successful in helping those in need prioritize needs and create a path to wellness.
Badawi is deeply involved and passionate about early intervention and getting others involved in the process. She sits on the Consortium of Care Committee. Their mission is to “get the stakeholders who are involved in these issues and get them talking and sharing.” These stakeholders include Health Departments, Education Agencies and non-profit groups who share a joint mission of identifying, serving and transitioning children with special needs. “What is great is the coordination, connection and feedback that is happening. People who might not know each other are making connections. They can call each other up when a problem arises and have a face to a name.”
The problems of early identification, encouraging doctors to provide developmental screenings and families and kids talking about transitions are big ones, but Badawi and her colleagues continue to push onwards. Working with the Parents Place of Maryland they are funding parent liaisons for clinics. The liaison provides information to parents about how and where to get services. “It is more than just giving someone a phone number.”
Another project they are excited about is the establishment of satellite clinics on the Eastern Shore of Maryland. They are working with agencies and the Kinera foundation to schedule services for families with multiple needs.
“People aren’t used to thinking about their health”, Badawi admits. She and her colleagues are helping kids with special needs to change that. It keeps her extremely busy though she does like spending time with her adult kids and enjoying the outdoors with her dog. Someone else will have to tackle the laundry issue.