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.
Thinking of myself as a health care detective who is solving a mystery makes a frustrating process feel a little bit more interesting.
You have to figure out the motive, gather the evidence, interrogate the suspects, and put together a case.
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.
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.
Many families that foster and ultimately adopt children with disabilities encounter challenges such as receiving insufficient medical supplies to care for the children and incomplete information from child welfare agencies about the children’s health histories.
Foster families and their advocates are working to mend the gaps in the system that can cause undue stress on these children who, in most cases, have already been through trying times before coming into foster care.
California’s system for providing durable medical equipment and supplies at home is complicated and difficult to manage, even in normal times. During the COVID-19 pandemic, rationing and supply chain disruptions have made things impossible for families of children with special health care needs.
I believe California needs a state oversight office for durable medical equipment to give families and patients a way to resolve problems before they cause harm.
As federal and state policy makers make plans for infrastructure and budgetary spending, let’s not forget to invest in the infrastructure of care too, particularly for children with disabilities.
The framework of support that makes it possible for families to care for children with complex care needs safely, in their own homes and in their local school systems, is part of our infrastructure of care.
Throughout the pandemic, medically fragile children in California’s pediatric long-term care facilities and their parents have endured drastic limits on their ability to see and interact with each other. Some locations barred parents and other caregivers from visiting their children in person for over a year, citing virus safety precautions.
Advocates and parents said they’re concerned that visitation policies at pediatric subacute units during the pandemic may have caused long-term harm to kids.
Parents of children with fragile, medically complex disabilities are expected to provide the same level of care during emergencies that intensive care units provide, but they’re expected to do it in the home.
The stakes are high: If you make a mistake, your child could die. That’s not a comforting thing to tell a new parent of a fragile baby.