PCI works to support and empower families of children with special needs in San Diego

Alejandra Leon trains fighters. Not the kind you would find sweating it out in a boxing gym but the unsung sort—parents who battle every day to ensure their sons and daughters with special needs are not ignored.

“There are a lot of disparities when it comes to people actually receiving what they need,” said Leon, who serves as the Special Needs Program Coordinator for Project Concern International’s U.S. & Border Programs (PCI/USBP). “Teaching families how to navigate a complicated system is a really concrete way that we’re able to help.”

In January 2017, Leon helped PCI/USBP launch a pilot program aimed at supporting families who have children with special needs in San Diego County. In addition to training community health workers on how to best assist these clients and understand their unique challenges, the program offers home-based education and care coordination for families. Over the past year, as the lead case manager, Leon has served a total of 28 families—the majority of which also face economic and language barriers.

“We want to help reduce the stress of the parents and help them save time. They have so much going on,” Leon said. “Having someone bring them new ideas and provide them with resources helps make a difference.”

PCI/USBP program participants

Photo by Lisa Bain/PCI
Maria Paula Sanchez and her daughter are among the first participants in a PCI/USBP pilot program aimed at supporting families who have children with special needs in San Diego County.

When Maria Paula Sanchez first enrolled in the program, she was renting a room from a family member and raising three young children on her own. She had just escaped a domestic violence situation and was grappling with the fact that her two sons had been diagnosed with autism. Her daughter was also showing signs of the developmental disorder.

“I was very disorganized. I felt so alone and didn’t know where to find help,” Sanchez said. “I was in crisis. My own family didn’t understand my children’s diagnosis.”

With support from PCI/USBP, Sanchez applied for and is receiving Supplemental Security Income benefits and In-Home Supportive Services. The extra income and time she gains from the respite care has allowed her to get organized and apply for better housing. She also learned how to request services for her children from the school district and be more prepared for meetings and medical appointments.

“I don’t speak English that well and [Alejandra] has been able to help me fill out forms, guide me to resources and has been a very positive influence in my life,” Sanchez said. “… I feel the load is so much lighter.”

PCI/USBP first began developing the special needs program with funding and technical assistance from Sandy Driver-Gordon, a longtime PCI supporter who saw an opportunity to expand on the organization’s community health work. Driver-Gordon’s sister and brother-in-law, Mary Lynn and Larry Weitzen, also provided financial support.

Driver-Gordon has worked as an educational consultant and advocate for more than three decades in California—starting both a camp for children with special needs and a transitional residential program for young adults with learning disabilities.

“The biggest challenge for parents is actually getting services,” she said. “School districts are very reluctant to accept the fact that your child has special needs, because the money is not there. You have to fight very hard to get it. The other challenge is getting medical advice. That’s where PCI comes in. We’ll go with families to the doctor, if need be, and provide back-up.”

Over the past year, PCI/USBP has started a collaborative relationship with 11 local agencies that provide and/or receive referrals for children in need of special services. By creating this network and building the knowledge and skills base of families, Driver-Gordon said clients become more equipped to handle challenges they might encounter long after exiting the special needs program.

“Our goal always is to train the parents how to be advocates for their children, because we’re not going to be around forever to do this, but they are,” she said.

At the beginning of May, Sanchez stopped by the PCI/USBP office to meet with one of her case managers and to share news about a long-awaited milestone. She and her children were approved for affordable housing and moved into a three-bedroom apartment of their own at the beginning of the month.

“When the apartments were being built, I used to go and take my children with me and say, ‘We will have an apartment here’ as a positive affirmation,” Sanchez said. “Little did I know that my dream would become a reality. There are really many more instances of feeling that sense of relief and hope. A great deal of what has happened has been a direct result of PCI’s help.”

According to Leon, the program has been mutually beneficial.

“Most times, I feel that I’m learning more from [these families] than the other way around,” she said. “Seeing the infinite love and acceptance parents like Maria have for their children, it inspires me to continue growing with them and providing the support they need and deserve.”

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