Meeting the needs of young people and adults with childhood‐onset conditions: Gillette Lifetime Specialty Healthcare

Abstract

This paper describes how Gillette Specialty Healthcare developed a program to meet the specialty-care outpatient and in-patient needs of children with cerebral palsy (CP) and other serious congenital disabilities as they made the transition to early adulthood. The program began in 2001, with the opening of a pilot clinic for adult outpatients. Several years later, the hospital opened a small in-patient unit for selected patients. Careful planning, consultation with staff, and partnerships with caregivers were crucial to program development. Attention to the physical environment was also essential. Utilizing an integrative model of care, the patient, caregivers, and the program service providers create a comprehensive plan of care that reflects each patient's needs, preferences, and priorities. The Gillette program, when evaluated over the long term, may serve as a model for meeting the emerging needs of the young adult with CP.

Transitional Care for Young People with Neurological Disorders: A Scoping Review with A Focus on Patients with Movement Disorders

“…49,50 The majority of models pertained to epilepsy services 47,50,51 or a spectrum of neurological disorders. 46,48,52 One trans-pathology model included both general medical specialties and neurology. 47 Two transitional models were based in the pediatric setting, 52,53 3 were based in adult health care, 20,50,53 1 was a mix of both health care environments, 51 and 1 was in the primary health care setting.…”

“…47 Multidisciplinary ambulatory care was the most common transitional care model. 46,47,[50][51][52] One ambulatory model described a carousel system, whereby patients saw the various health care professionals at separate appointments on the same day. 50 Another MDT program based in the adult hospital described a 5-step program coordinated by clinical nurse specialists.…”

Cerebral Palsy Grown Up

“…The facility is staffed by a multidisciplinary team of providers (therapists, developmental pediatricians, and internists) that creates an environment in which professionals learn from each other and care for patients with CP of all ages. 56 Although Gilette is held up as an ideal model, the question of who pays for the care remains. Should the cost fall to patients, insurance companies, governmental grants, foundations, or a combination of these?…”

“…Ideally, multiple people would participate in the development of this plan including the young adult themselves, parents, physicians, physical and occupational therapists, social workers, teachers, community service providers, and potential employers. 56,58 These approaches provide the greatest likelihood of altering the trajectory that leaves far too many adults with CP underemployed and living alone with their parents, isolated from social relationships. We close with the success story of Kristin Rytter, nonambulatory and nonverbal PhD graduate of the University of Washington.…”

Readiness of independency in health care management for young adults with cerebral palsy

“…Unsuccessful transition to adult life may lead to unnecessary lifelong dependency, unemployment and low quality of life [27,28]. The transition from paediatric to adult health care is crucial process for persons with CP [29][30][31][32][33][34] and specific therapeutic approach is essential [35][36][37][38]. The aims of this research were to assess young adults with CP overall readiness for transition to adult life, the readiness of independency in health care management and the factors having impact on readiness for independency in health care management.…”