Family Support and Leadership
Family support and leadership as a focus is the outgrowth of the consumer-led movements of the 1960s and 1970s. Its roots are the parents at the state and national level who fought against institutionalization, advocated for educational and community services and started the family support movement. Family participation is critical to the development of quality services, programs and policies and therefore our activities focus on all levels including direct service, program development and systems change. The goals of our Family Support and Leadership program are to:
- Improve the lives of families through direct support and education.
- Improve the ability of community based organizations, especially those that are parent run and/or staffed and those that serve underserved and/or minority communities to meet the needs of families of children (of any age) with disabilities.
- Develop family support as a profession through training and the development of professional standards to parents and other family members, who work directly with other parents and/or at the program and systems change level.
We work at the local, state and national level to increase parent professional partnerships and to bring recognition to the value of collaboration with parents and other family members.
Programs, Collaborations and Initiatives
Direct Service Programs
Webinars – We offer a monthly series of webinars targeting the needs and interests of families of individuals with developmental disabilities. Examples of past webinars include: Employment First, Self-Determination, Changes to the Medicaid’s Home & Community Based Services (HCBS) Regulations and Restraint and Seclusion. The target audience for the webinars are individuals with developmental disabilities, parents and family members. However they are also of interest to professionals working in the disability field.
Parent IEP Coaching – This is a small program that provides parents with an in-depth understanding of their child’s assessments and IEP history with the goal of helping parents feel like more confident and competent members of their child’s IEP team. Parent IEP Coaching is part of the CA-LEND program.
Consultation to Community Based Organizations
Fiesta Educativa / Chinese Parents Association for the Disabled (CPAD) Community Parent Resource Center (CPRC) - Activities have included monthly staff development sessions for the CPRC, conducting on-going leadership training for advanced level parents.
Parent Support Circles of Los Angeles County – this is a program through Children’s Institute, Inc., and funded by First 5 Los Angeles. The UCEDD received a sub-contract to develop the materials that are used in training parents to become support group facilitators.
Project UNITE – This is a program through the Westside Regional Center and funded by the Mental Health Services Act and DDS to provide services to youth and young adults with dual diagnoses of a developmental and a psychiatric and/or emotional disability. The UCEDD is developing a parent mentor training program to provide parents with one-on-one support.
Development of Family Support as a Profession
CA-LEND – Family Support is one of the disciplines included in the CA-LEND program. The USC UCEDD was the first LEND program to include family support trainees working side-by-side with trainees from other disciplines. We were also one of the first programs to have a Family Support Faculty Member.
LEND Family Discipline Network – The CA-LEND Family Support Faculty serves as the chair of the national LEND Family Discipline Network. This network has been actively involved in activities aimed at the inclusion of family support as a professional discipline and identifying the impact that family support has in training professionals from all the LEND disciplines. Some of their activities include:
- The LEND Family Involvement Assessment (Endorsed by AUCD and the Maternal Child Health Bureau)
- Family Centered Care from the Parent’s Perspective, Journal of Family Social Work (2012)
- Numerous posters and presentations on the role of family in advanced level training.
Learn the Signs. Act Early – The Family Support Director serves as California’s co-ambassador to the Centers for Disease Control (CDC) Learn the Signs. Act Early. initiative. The goal of this national program is to increase the early identification of developmental disabilities through increased routine screening and understanding of developmental milestones. The target audiences are parents of children 0-5, healthcare providers, early care and education providers and other interested parties.
Fran Goldfarb, MA, MCHES, CPSP, Director, Family Support