From Policy to Action: Implementing HRTW Services at the State Level

A Youth’s Life Should Not be So Complex!

In the past, most youth and young adults diagnosed as children with special health care needs had much of their daily life consumed with clinic visits, inpatient stays and in the following of treatment plans. Activities engaged in by other children -- going to school, playing team sports, community activities, doing chores – were eliminated or greatly curtailed due to their chronic health issue or disability. A day’s activity might include lengthy medical treatments prior to school, special nutritional support in-home and out, assistance with daily needs, and sometimes an incident would occur requiring medical attention and this would take time from school and social interactions with friends. When few children with a life threatening diagnosis lived to be 18, talking about the future seemed unrealistic. Much has changed today.

The challenge of their transitioning to adulthood was recognized as early as 1989 when then Surgeon General Koop held a meeting with family members and health professionals to focus on the health needs of youth as they transition from high school to higher education and/or work, and from home to community. Today, more than 90 percent of all children who develop a disabling condition in childhood now survive into adulthood. This is due to the advancement of medicine; new and more effective treatment techniques; a new philosophy that promotes teaching families how to provide medical care in the home setting; and a vast array of high-tech, portable and durable medical equipment for in-home use. Even so, it remains difficult to promote a high quality of life for a child with a chronic illness. In addition to the above, also required are access to quality health services, affordable health care, and insurance coverage for related equipment needs, and an inclusive community environment -- in education, recreation and employment. The confluence of most, if not all, the above is required to make growing up with complex health issues less complex!

Additionally, while there were numerous programs and policies that addressed children and youth with special health care needs, there was little coordination among federal agencies or state services. This often resulted in a gap of services and a duplication of services that was not time efficient or cost effective. In a beginning effort to serve youth with disabilities more efficiently and effectively, the U.S. Department of Education launched in the mid 1980’s demonstration grants to assist people with disabilities transition from school to adulthood, i.e., jobs, independent living, and further schooling. Much that was positive happened as a result of these early programs. However, the attention was focused on skills, both academic and social, with little attention given to being proactive in sustaining health/wellness.

Being witness to all these positive changes begs for more positive change, and more frequent change. However, questions arise such as: What motivates change in a system? What are the service delivery methods that facilitate seamless transition to adult health care? How can we do more to ensure that identified needs drive the system to find solutions or to meet the needs? What specifically can be done by consumers to encourage physicians and federal agencies with funding dollars to make policy changes or to increase consumers’ knowledge of health/wellness practice? How can the system be more motivated toward the encouragement of more self-reliant behavior?