Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities

The passage from adolescence to adulthood is often a time of internal and external upheaval. It can be especially complex and anxiety-provoking for young adults with special health care needs, their families, and those who work on their behalf. Unfortunately, during the period of transition, there is likely to be a hiatus in the provision and utilization of appropriate health care (Carroll, 1983). For some youth who have been through multiple procedures and have long histories of spending school vacations recovering from surgery, there is a health care fatigue that prevents them from seeking out appropriate adult care. For others who have enjoyed pediatric models of coordinated care and welcoming specialists, the adult world is too fragmented, and the roles of self-advocacy and medical decision-making are too new. Navigating the adult world of insurance and learning about coverage changes is daunting.

In 1999, Scal et al. reported that in their study of trends in transition, the lack of adult medical providers interested in transition health issues appeared to be the primary obstacle in the development of transition health service programs. They suggest this may be a reflection of a lack of training in transition health issues. Thus they conclude that it appears that the most significant barriers to transition are not the resistance of adolescents or their parents, but limitations in health care systems. The attention to addressing this important health care concern is growing in children’s hospitals across the country. Issues in health care transition that must be addressed include the provision of services, financing of care, training of staff, and research.

Gillette Children’s Specialty Healthcare in St. Paul, Minnesota has undertaken a multi-year plan to ensure continuity of quality care for transition-age young people with special health care needs. In 2001, it developed the Lifetime Specialty Healthcare clinic for adults with childhood-onset conditions; in 2004 it adopted a transition philosophy and policy; and in 2005 it will open an adult inpatient unit.

At the start of Gillette’s shaping of its plan for adolescent and adult care, it convened focus groups of adults with disabilities and asked why transition to community-based adult care was not meeting their needs. They reported that they needed a medical and rehabilitation staff that was skilled, understood the context of disability, and would be responsive to their needs. They wanted to be treated with respect, which meant to be listened to, have their preferences acknowledged, and have their privacy considered. They wanted appointments that would allow them the time to be able to communicate their most important concerns and questions to care providers. In response to this input, the Lifetime Specialty Healthcare clinic was established to provide coordinated, integrated visits where the physician and other rehabilitation staff communicate with each other and the patient. The patient is expected to be as participatory in the prioritization of goals and in decision making as they are capable of being. Appointments are lengthy for new patients to allow for discussion with a social worker; screening by occupational and physical therapists, speech language pathologists, seating specialists, and orthotists; a health assessment by the nurse; and 40-60 minutes with the physician. Specialty clinics were assembled within the Lifetime clinic; these are days set aside each month to bring together the teams needed to best address a specific patient population. For example, a physical medicine and rehabilitation specialist and an internal medicine physician for the cerebral palsy clinic, and a neurosurgeon, urologist, and physical medicine and rehabilitation specialist for the spina bifida clinic. This encourages a comprehensive look at an individual’s health status and promotes interdisciplinary communication and the engagement of the patient and their caregivers.

In September 2004, Gillette adopted a policy whereby all patients age 16 and older would be assessed for their readiness for transition to adult care providers. Gillette’s goal is that patients will be introduced to transition at age 14, have a written transition plan at age 16, and be prepared to go to adult care by age 17. Patients will receive a transition binder that educates them on the activities that occur in transition, provides checklist type tools that will help to assess self-advocacy skills and self-awareness, and supports the organization of paperwork such as dictations from visits and insurance information.

The success of Gillette’s Lifetime Specialty Healthcare clinic is due in part to providers who recognize the needs and preferences of young adults with childhood-onset conditions. In Gillette’s previous attempts to transition young adults to other adult specialty providers in the community, they kept coming back because they preferred caregivers who understood disability even through they were oriented toward pediatric care. Now, they can transition to adult health care at Gillette.