Preparation for adult participation, starting at the beginning
Authors: Judy Thibadeau, CDC’s Partnership for Transition
Background
Improvements in medical care have dramatically improved the
survival rate to adulthood of children born with spina bifida (SB).
In the United States, many of these adolescents and young adults
encounter the following challenges: difficulties in transitioning
from paediatric to adult health care and enrolment in health
insurance plans as well as self management of their special health
needs; reduced sensitivity to learning differences and psychosocial
needs; changes in the type and level of formal supports and access
to services; changes in individual decision making; a change in the
role of parents; obstacles in establishing adult relationships; and
finding vocational success.
SB-specific guidelines to make this journey from diagnosis at
birth to a maximized level of independence and participation as an
adult have not been clearly delineated. This presentation will
describe a lifespan approach to foster the successful transition to
adulthood.
Materials and Methods
Centers for Disease Control and Prevention professionals, U.S.
clinicians, researchers, and individuals living with SB have
collaborated in structured work-groups to identify crucial areas of
preparation for adult independence and participation. Three domains
of a transition pathway model from early childhood to adulthood
were targeted: Self Management/Health, Personal and Social
Relationships, and Employment/Income Support. Components of the
transition pathway model include: identification of key
developmental milestones and measures, and the use of assessment
tools intervention strategies and referral resources. The resulting
Transition Pathway Model serves as a lifespan template for
professionals and families to better prepare children and youth for
adulthood in the three domains and serves as a record of progress
in these domains.
Results
Preparation for Adult Participation" logic model:
1. Key developmental milestones and associated indicators in the
areas of
- Self Management/Health
- Personal and Social Relationships
- Employment/Income Support
2. Interventions recommended to assist in milestone
achievement
Conclusions
Much work has been done in the area of transition for young
people with chronic disabling conditions such as SB. Many
individuals with SB are less likely to finish high school, pursue
secondary education, get and keep jobs, and live independently.
This presentation describes a life-span oriented framework to
potentially improve these outcomes for youth with SB.
McKing Consulting Corporation, National Spina Bifida
Program, Centers for Disease Control and Prevention National Center
on Birth Defects and Developmental Disabilities, 1600 Clifton Rd,
MS E-88, Atlanta, GA 30333, United States
E-mail: jthibadeau@cdc.gov
