According to the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act), a “developmental disability” is a severe, chronic disability that is caused by a mental or physical impairment (or both), that occurs before the age of 22 years, is likely to continue indefinitely and results in “substantial” functional limitations in 3 or more of the following areas of major life activity:
- Receptive and expressive language
- Capacity for independent living
- Economic self-sufficiency
“Substantial” means individuals with DD who receive services must need a combination of special services and individualized supports that will last all their lives or for a long time.
There are over 600,000 people in California who meet the federal definition of DD. California has a system of 21 regional centers authorized by the Lanterman Developmental Disabilities Services Act, California legislation that provides entitlement services to people who meet the state definition of DD, which is the same as the definition in the DD Act, except the condition has to occur before the age of 18 and must be caused by:
- Mental retardation (intellectual disabilities)
- Cerebral palsy
- Autism spectrum disorders
- Epilepsy, or
- Any condition that requires services similar to what a person with intellectual disabilities would need.
Regional Centers serve slightly over 200,000 people who meet the state definition of DD.
UCEDDs are part of the National Network of University Centers for Excellence in Developmental Disabilities Education, Research and Service authorized under the DD Act, with Protection and Advocacy Agencies and State Councils on Developmental Disabilities in every state. UCEDDs are unique in the DD network because they are affiliated with universities and help individuals with DD and their families through the following four core function activities:
Training graduate students to be future leaders in the DD and related systems through operating Interdisciplinary Pre-Service Training Programs. The USC UCEDD does this through the California Leadership Education in Neuro-Developmental Disorders (CA-LEND) funded by the Maternal Child Health Bureau.
Developing and disseminating exemplary Clinical and Community services and supports to address unmet needs of individuals with DD and their families, and providing technical assistance to public, private, and community based organizations to improve their services to individuals with DD and their families, especially those that are currently underserved.
Disseminating new and important information to individuals with DD and their families through educational products and training materials we develop, testimonials to the legislature or policy briefs we write, organizing community education events, and publishing articles in professional journals and writing books.
Conducting Research (in the laboratory, in places where individuals with DD and their families get services, or in the communities where people live, work, and play). We want research to find cures and treatments for specific developmental disabilities and related conditions, to evaluate programs and services so we know what works and what doesn’t work, to inform policy and regulations that guide the services and supports people with DD and their families get so they can live, be educated, work, have meaningful relationships, and contribute to their communities.
The USC UCEDD has expertise in the following focus areas:
- Early intervention, prevention, infant mental health
- Autism Spectrum Disorders
- Racial disparities, equity, and cultural proficiency
- Behavioral health
Barbara Wheeler, PhD, RN, Associate Director, Intellectual and Developmental Disabilities
Cecily Betz, PhD, RN, Director of Research
Marian E. Williams, PhD and Sara Sherer, PhD, Co-Directors of Training
Michelle Rojas Soto, MBA, MS, Director of Community Education, Information Dissemination and Technical Assistance
Fran Goldfarb, MA, MCHES, CPSP, Director of Family Support
Wesley Witherspoon, Consumer Advocate