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.
Children who need medically intensive care cannot attend traditional day care programs. California has an option for these kids, called Pediatric Day Health and Respite Care facilities.
But the amount the government pays these facilities to care for children has not kept pace with inflation and rising staffing costs. Because of the stagnant rates, California’s pediatric care facilities are in danger of closing.
Our house lost power a few nights ago, during one of 2023’s record-setting storms. For our family, losing power is a medical emergency.
But on this occasion, for the first time, I had access to a portable power station. Portable power stations are rechargeable batteries that can provide hours of backup electricity, which is especially important for people who use medical devices or assistive technology.
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.