California has a variety of programs aimed at supporting the health care needs of children with complex disabilities. But accessing and utilizing these programs is complicated and time consuming.
The California Health Report spoke with several experts and disability advocates about what can be done to ease the burden on families and ensure children with disabilities get the care they need.
The California Health Report spoke with disability rights experts and parent advocates about what families who speak a language other than English need to know about their rights when accessing health care and special education services, and tips on how to advocate for themselves.
Almost half of California residents speak a language other than English at home, most often Spanish.
Participating in extracurricular activities is hugely beneficial for children’s wellbeing and has been found to lower their risk of having depression and anxiety.
CoachArt is a nonprofit organization that helps chronically ill children ages 5 to 18 explore hobbies and skills through free classes, including painting, cooking, guitar lessons and martial arts.
For me, the most important thing about the holidays is food. I love cooking almost as much as I love eating.
But that perception was challenged when my son, James, was born with medically intensive disabilities. I wanted my son to have a positive relationship with food, even though he is fed through a tube. To do that, I had to tackle my own emotional baggage about what it means to feed my family.
Adults with disabilities no longer qualify for the same care, services and programs that they did as children. Instead, youth who turn 18 and their families must tackle a long checklist of tasks.
Yet with knowledge of the right resources and time to plan, this transition can be more manageable.
In 1996, a group of 10 Asian American families founded a support network for people with disabilities and their caregivers. The organization eventually became a nonprofit called Friends of Children with Special Needs.
Today it serves over 1,500 Bay Area families, about half of them Chinese American, and offers a variety of programs across three locations.
Caring for children with special needs is demanding work. Without adequate support or rest, parents can end up feeling depleted and alone.
The solution, according to experts and parents who have faced these challenges, is to reach out for help, connect with other families of children with disabilities, and prioritize self-care.
A new benefit called Enhanced Care Management offered under California’s Medi-Cal program could help parents who are caring for children with complex physical, behavioral and social needs.
However, the program — which launched July 1 — has been slow to help most families who qualify.
For children with complex medical needs, palliative care can offer physical relief and also support to families.
However, systemic failures such as a shortage of places that offer palliative care services for children, and also a shortage of physicians who do this work, lead to long wait times and administrative hurdles. The issues with the system, according to experts, can be fixed.
During the pandemic, California and other states didn’t require people to renew their membership Medicaid, known as Medi-Cal in California.
That changed on April 1, when California began sending out renewal packets once again. Renewals will be sent out in batches, based on the month in which beneficiaries originally applied for Medi-Cal.