USC UCEDD Consumer Advisory Committee
Consumer/Self-Advocacy Organization Representatives:
Desiree L. Boykin, member, State Self-Advocacy Network (SSAN)
Desiree Boykin is an adult with cerebral palsy. She is a member of the State Self-Advocacy Network (SSAN) representing ARCA and currently serves as the Secretary. She is also a member of the South Central Los Angeles Regional Center (SCLARC) Consumer Advisory Committee (CAC), where she is the past president as well as a member of the SCLARC Board of Directors. She is particularly interested in voting and jobs and is a big supporter of Employment First.
Julie Gaona, CALIF ILC and Lanterman Regional Center
Julie Gaona is an adult with cerebral palsy. She is married to Rigoberto Gaona (also on our CAC). She volunteers at CALIF ILC and Lanterman Regional Center. She is a member of many boards including:
- Lanterman Regional Center Consumer Advisory Committee
- Self-Advocacy Board of Los Angeles County (SABLAC)
- Regional Advisory Committee (RAC) – SCDD Los Angeles Office
- SSAN committee
Although not a formal member, she also attends the Paratransit Consumer Advisory Meetings for Access Services. She is particularly interested in self-determination, the ABLE act, new changes with the regional centers affecting group homes and making sure everyone keeps emphasizing the importance of the Lanterman Act as well as the ADA.
Rigoberto Gaona, CALIF ILC and Lanterman Regional Center
Rigoberto Gaona is an adult with cerebral palsy. He is married to Julie Gaona (also on our CAC). He volunteers at CALIF ILC and Lanterman Regional Center. He is a member of many committees including:
- Regional Advisory Committee (RAC) – State Council on Developmental Disabilities, (Vice-President)
- Self-Advocacy Board of Los Angeles County (SABLAC)
- Paratransit Consumer Advisory Meetings for Access Services
- Lanterman Regional Center Consumer Advisory Committee (20+ years)
He is particularly interested in medical care, housing, regional Center services, independent living & Self determination, work and increasing benefits for people who are not U.S. citizens.
Nestor Nieves, Consumer Advisory Committee, Eastern Los Angeles Regional Center (ELARC)
Nestor Nieves is an adult on the autism spectrum. He is a recent graduate of California State University, Northridge (CSUN) with a bachelors in child and adolescent development. He is a member of the Eastern Los Angeles Regional Center (ELARC) Consumer Advisory Committee (CAC). He is particularly interested in independence and helping people prove they can do more than they believe in even if they have developmental disabilities.
Alex Andy Phuong, Chinese Self Advocacy Group Empowered (SAGE) and Chinese Parent Association for the Disabled (CPAD)
Alex Phuong is an adult on the autism spectrum. He works at VIVA Lifestyle, an online website and volunteers at The Alhambra Civic Center Library. He has also written articles for "The Culture Trip," a website emphasizing L.A. culture. Mr Phuong is a member of Chinese Self Advocacy Group Empowered (SAGE) and Chinese Parent Association for the Disabled (CPAD). He is particularly interested in combating the negative stigma associated with having a disability and increasing awareness of civil rights for people with disabilities.
