Spina Bifida Transition Registry
Project Description:
Adolescents, ages 14 and above are eligible to receive transition services in the spina bifida clinic. The transition model implement will include the following 1) comprehensive assessment of the youth needs for services. These services include health care, education and training, employment, community lliving, housing, transportation, social relationships and recreational and leisure activities. Based upon the assessment of needs are done, a transition plan will be developed with the input of members of the transition team.
The transition plan will embody a service coordination and referral model to support and assist adolescents in meeting their needs for services and support to enable them to meet their long-term goals in the aformentioned areas of functioning.
The transition coordinator will track and monitor the adolescent's progress in meeting the objectives of their transition plan. Tracking activities will include phone calls, service referrals to other CHLA professionals and community service personnel.
The services and adolescents' progress in meeting transition plan activities will be inputted into the SB transition registry.
The aim and objectives of the study are to:
Aim: To demonstrate the service activities and outcomes of care provided to adolescents ages 14 years and older who receive transition services in the CHLA spina bifida clinic as a means of investigating the potential effectiveness of this service model. Secondary analysis will be conducted on the data collected and inputted into the SB transition registry.
Objectives:
1. To track the frequency and type of services and supports provided to adolescents with spina bifida who receive transition services.
2. To conduct secondary analysis of data to investigate potential patterns of service delivery.
3. To monitor the costs of care provided to adolescents who receive transition services during the period of service delivery.
4. To better understand the acquistion of skills and knowledge acquired as an outcome of receiving transition services.
5. To determine what are measurable adolescent benchmarks and outcomes of transition services.
Core Function(s):
Performing Research or Evaluation
Area of Emphasis
Education & Early Intervention, Health-Related Activities, Employment-Related Activities, Housing-Related Activities, Transportation-Related Activities, Recreation-Related Activities, Quality of Life, Other
Target Audience:
Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN, General Public
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Disadvantaged Circumstances, Limited English, Geographic Areas, Empowerment Zone, Renewal Community, Rural/Remote, Urban, Specific Groups
Primary Target Audience Geographic Descriptor:
Single-County, International
COVID-19 Related Data:
N/A
