Johnny & Desiree
Alicia was one of our first parents who completed the TIGER parent training program. Alicia and her husband, Javier, have two children, Johnny and Desiree, both of whom have cerebral palsy, seizure disorders and use wheelchairs for mobility.
Alicia started advocating for Johnny and Desiree while they were very young. She and Javier made numerous requests to their school district that their children be placed in some general education classes at some point in the day. Until then, the children had always been educated in segregated bungalows. Alicia and Javier believed in inclusion, that their children would learn more alongside typical peers, and that both Johnny and Desiree should be able to participate in (and not just observe) the general education class. The school district refused, but Alicia did not give up. The district continued to ignore their requests, telling the parents “the education provided to your children is the best.” However, both kids remained segregated all day and continued to show a number of signs that called for increased support, including poor endurance, impaired motor control, limited flexibility, and impaired posture, among many others. Desperate for her children to get help, Alicia found out about Learning Rights’ TIGER Program, where she enrolled and learned all about her children’s education rights. Alicia successfully included her children into an elective class of their choice – like rest of the students. Desiree was able to take photography classes, which remains her passion to date. Johnny was able to take computer classes. He was so happy to be in the computer lab, that at the beginning of each class, he would happily turn on all the computers for all of his classmates!
TIGER training has enabled Alicia and her husband to advocate on behalf of their children in every possible context. In addition to advocating for her children’s rights in the school setting, Alicia handled their transitional and health needs after they graduated and prepared for post-secondary life. The same skills Alicia and Javier employed at the school, they later used when working with their Regional Center (government-funded institutions in charge of providing help and a wide range of services to individuals with developmental disabilities and their families). For example, Alicia and her husband filed several requests for a Fair Hearing when Regional Center services were simply denied without explanation or reduced without notice. In one such case, South Central Los Angeles Regional Center (SCLARC) cut therapeutic swimming for almost all of the children in the entire Regional Center. Alicia reviewed and filled out the necessary paperwork, and ultimately ended up representing herself at the hearing, where she won her case. She was allowed to have the swimming program reinstated for her children by convincing the administrative law judge that it was an appropriate service in the children’s Individual Program Plan (IPP). In another case, Alicia requested a specialized stroller because she found it nearly impossible to fold and carry the wheelchair Johnny and Desi were using; after her request was initially denied, she made another request and the stroller was provided. Alicia and Javier have always worked as a team. Javier can be shy, but Alicia is not afraid to speak up for her children’s rights. Javier is mainly in charge of the paperwork and arranging appointments and Alicia does the talking. Javier remembers feeling intimidated the first time he stepped in front of a judge while advocating for his children: “I remember the Regional Center bringing in about 15 different experts and on our side were just Alicia, Johnny, Desiree and I. But in the end, we won.”
Armed with our TIGER training, Javier and Alicia won every single appeal they sought for their children. They feel ready for any future challenges that may come their way. In addition to advocating on behalf of their children, they are active in the community, helping other parents advocate better on behalf of their children. They also lead two TIGER Community groups. This kind of self-advocacy and grassroots community training is a perfect example of how TIGER prepares families to advocate, for life.