In Santa Clara County, over 150,000 people are living with a disability. For the client families of Parents Helping Parents, a child’s diagnosis of a disability means quickly having to learn to navigate a new and confusing world of specialty care providers, researching and developing a plan of care for their child’s development, and advocating for additional supports and services for their child in a school setting. But Parents Helping Parents knows that advocacy in the disability community doesn’t stop at one child. Through a funding partnership with the Health Trust, Parents Helping Parents has implemented a policy advocacy education framework to empower parents of children with disabilities to advocate for the disability community at the public policy level.
Parents Helping Parents (PHP) has been supporting the disability community in Santa Clara County for 45 years, providing information, training and resources to build strong families and improve systems of care. The majority of the over 6,000 families served each year primarily speak a language other than English, and nearly 70% live in low-income areas including East San Jose and Gilroy. They are experts on connecting local families with resources and supporting families throughout the span of experiences faced by children and adults with special needs, from before an official diagnosis to making plans for the long term care of adults with disabilities.
Mark Fishler, PHP’s Development Director, notes, “When we started this project, it was with the intention that the disability community was underrepresented at a public policy level. PHP has a history of making parents into advocates for their own family, but we hadn’t been making parents advocates for system change for the community at large. Quite frankly, there was nobody in the Valley that was doing that as a whole.”
Recognizing the lack of local coordinated advocacy across the spectrum of public policy, PHP developed a policy advocacy training program for their client families called “Parents for Change,” supported by a grant from the Health Trust. Initial outreach to interested families was wildly successful – there were 105 applications for only 12 initial spots. PHP expanded its seats and established two cohorts, one for English-speaking families and one for Spanish speakers, who meet virtually every month for six months.
For parents unable to participate in a regular cohort, PHP is also creating opportunities for parents to become “one minute advocates” through social media which allows parents to easily contact public policy makers on important issues facing the disability community. Most recently, PHP has been advocating for equity in COVID-19 vaccine distribution for people with disabilities and their caregivers.
PHP’s Parents for Change program implements a curriculum called “Project Leadership,” developed by Family Voices of California (with support from the Lucile Packard Foundation for Children’s Health), modified for the online format of the two cohorts and to meet PHP’s long-term goals for parent advocacy. The cohorts began with introductory lessons on advocacy and the history of the Disability Rights Movement.
Beverly Wong, Advocacy and Civic Participation Manager for PHP, reminds us, “Today’s advocates aren’t starting from a completely blank slate. The laws and systems we enjoy now are due to the advocacy and organizing work of the people who came before us. The families are part of this ongoing work, and they can take strength from that.”
In addition to learning about the history of advocacy in the disability community, participants also learn how public policy moves forward, about the legislative and budgetary process, and when and where during that timeline they are able to contribute their voices to the conversation. Families are coached on effective storytelling and how they can use their family’s own experiences as compelling evidence for change, an important tool when advocating with legislators and policymakers.
“Our hope is that, through the cohorts, this is the beginning of creating power for our parents,” confirmed Wong. “When we come together, it increases our power and advocacy, and we hope that these groups will look at specific issues and advocate to make real changes. We want to expand and grow to become a voice for families with children with disabilities in Santa Clara County, and even beyond at the state and national level.”
Fishler agrees, “No longer is it going to be one person from a non-profit speaking truth to power, it’s going to be a dozen parents doing it in person, and hundreds more joining in online.”
With support from Wong and their peers, members of the cohort develop action plans to identify issue areas important to them and the lives of their family members with a disability. The plans provide structure for measured activity toward a goal, and encourage families to think through factors such as data and reports, potential allies and possible opposition, messaging, and timelines.
Current action plan topics, established by the participants, include mental health support for students, fire and other disaster safety planning, access to services when transitioning to adulthood, and the laborious and confusing special education system for school-aged children with disabilities.
Public schools are required, by the Individuals with Disabilities Education Act (IDEA), to provide a free and appropriate education for children with disabilities. In Santa Clara County, nearly 12% of children in public school are enrolled in some level of special education: the additional support needed by children with disabilities to ensure their success in the classroom. While some students with disabilities may be accessing some supportive services in a school setting, as a whole they score lower on standardized tests than their peers. They are also significantly more likely to be suspended or expelled than a student without disabilities. For example, in the San Jose Unified School District, students with disabilities are more than three times as likely as students without disabilities to be suspended from school.
And yet, special education has been significantly underfunded for years at the federal and state level, resulting in local school districts having to fund as much as 60% of the cost. This financial burden, insufficiently supported by government sources, leads to a strained and overworked special education system, with school service providers (such as counselors, occupational and speech therapists, aides, and resource specialists) spread thin. Communication and access to information, especially noted by the Spanish-speaking cohort, is insufficient.
Access to services, both in-school and outside of school, impact the long term health outcomes for people with disabilities. For lower-income families, and those for whom English is not a first language, receiving sufficient support is exceptionally challenging.
“Our parents are seeing – not just in the school system, but in every system, even with their doctors, providers, and therapists – that language and communication issues and a lack of information is a huge barrier,” explains Wong. ”If they can’t access the information, they’re at a huge disadvantage. How do you get your needs met if you don’t have the information or can’t communicate?”
Parents participating in PHP’s advocacy cohorts consistently mention the need for additional advocacy at the school and district level as a high priority. Through the program, families are educated on the ways to get involved in their local schools and school districts, and how to mobilize others to advocate for additional funding and sufficient resources for all students receiving special education services, in addition to advocating for their individual child.
The two cohorts of 17 parent advocates will graduate from the formal curriculum later this spring, with completed action plans and a clear path forward to engage others in advocating for the disability community in Santa Clara County. The families will continue to meet post-graduation to provide a space for support and collaborative action, including planning virtual visits with local, regional, and state policymakers. These activities will provide them with the opportunity to apply their action plans and the knowledge and skills they learned during their sessions.
Parents Helping Parents’ Parents for Change program builds health equity by lifting up the unheard voices of the disability community, specifically including low income families and people of color; equipping families with the increased knowledge and capability to advocate for policies to ensure equitable resources.
“It’s not just about advocating for change when your child is young, it’s about advocating for your child and the community as a whole, throughout the entire life-span as a person,” explains Fishler. “Equity is really important to us at PHP, and to our families, and equity has to include people with disabilities – that’s why we do what we do.”
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