A critical program that medically fragile children depend on to get at-home care is broken, leaving families desperate.
This is a medical and developmental emergency for children with disabilities, and California needs to act quickly to fix it.
Children
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.
In California, over 98 percent of newborns are screened for hearing loss. But when it comes to intervention, there is little action to ensure these children are supported.
A bill pending in the California Senate aims to rectify problems with the state’s current Hearing Aid Coverage program and expand hearing aid access to thousands of families across the state.
When Christina Kaviani’s son, 6, doesn’t want to hug a grandparent or friend, Kaviani goes against some parenting methods and doesn’t make him.
To her, it’s a matter of consent.
As an educator on healthy relationships, consent is at the heart of what she teaches.
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.
Since the start of the COVID-19 pandemic, finding nurses to care for medically fragile children at home has become extremely difficult, according to parents of children with disabilities and home health agencies.
The shortage has prompted calls for California’s governor and legislature to increase Medi-Cal reimbursement rates for home nurses by 40 percent.
Fetal Alcohol Spectrum Disorders are alcohol-related disorders thought to be the most common birth defects in the western world.
A recently passed California law should make it easier for children affected by these disorders to access special education services. The law goes into effect in January.
Almost all children who experience housing insecurity also experience trauma because of the stress of their situation. California and the federal government recognize this, and require schools to provide these children with additional support.
But experts believe tens of thousands of California children experiencing homelessness fall through the cracks and receive little to no help from their schools.