Giving Compass' Take:
- Parents and caregivers of children who have disabilities are coming together to navigate the complex medical system, disability programs, public benefits, and special education.
- What are the additional challenges for families that speak English as a second language? What are the other barriers to accessing care for children with disabilities?
- Learn about the limited childcare options for these families.
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Caring for children with disabilities—whether they have a developmental disorder like autism, a physical disability, a chronic medical condition or a combination of these—is demanding work. Without adequate support or rest, parents can end up feeling depleted and isolated. Stigma in some communities over having a child with disabilities can deepen this isolation. Some parents develop physical or mental health problems as a result. The solution, according to experts and parents who have faced these challenges themselves, is to reach out for help, prioritize self-care and connect with other families of children with special needs.
That’s what Wang did. In 1996, she was part of a group of 10 Asian American families who founded a support network for people with disabilities and their caregivers. They started by hosting gatherings where families could meet each other and discuss how to access care and resources for their loved ones. The organization eventually became a nonprofit called Friends of Children with Special Needs. Today it serves more than 1,500 Bay Area families, about half of them Chinese American, and offers a variety of programs across three locations, from after-school enrichment activities to adult day care and employment services. Parent support groups remain a flagship program, said Wang, who is now vice president of the nonprofit.
“We wanted to bring happiness to individuals with special needs and peace of mind to the families,” Wang said. “As parents we felt that if we can bond together that would be so much more powerful than trying to do everything by yourself.”
The stress of caring for a child with disabilities goes beyond the caregiving itself. Navigating the complexities of the medical system, disability programs, public benefits and special education can be overwhelming, especially if a caregivers’ first language isn’t English. Many parents wrestle with strong emotions such as grief and may even blame themselves for their child’s diagnosis. Financial pressures mount if one spouse has to quit work to take care of the child or medical bills aren’t covered by insurance. Marriages can become strained. Siblings may act up because the child with disabilities gets so much attention.
Another challenge is stigma. Wang said about half of the families she meets struggle with this. Some keep their child with special needs at home, not even disclosing the disability to their closest family members and friends. This leads to further stress and anguish for the parents and is detrimental to the child because they don’t get the resources that can help them live a fuller life, she said.
Read the full article about connecting parents who have children with disabilities by Claudia Boyd-Barrett at YES! Magazine.