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.
A 2020 Public Counsel study of youth ages 3 to 21 living at home found that, for every $1 an English-speaking child received in fiscal year 2018-2019, a Spanish-speaking child received 82 cents — a disparity that grew 46 percent over the previous four years.
The unequal spending on services has persisted despite the state allocating an extra $11 million annually to reduce disparities in the regional center system.
California’s regional center system the system has struggled to provide services to Spanish-speaking families at the same rate it does to English-speaking ones.
Claudia Harty with Parents Helping Parents, a San Jose-based organization that works to connect families with services, shares ways to improve outreach to Latinx families of children with special health care needs.
After almost 10 months of staying home, some of these families have settled into the new reality and are receiving better support. Some have found creative ways to adapt. But others are still struggling to get their children the help they need.
How well families are doing depends a lot on their resources, both relational and financial. To help families that are struggling, lawmakers need to provide greater financial support such as stimulus payments, food subsidies and rental relief, advocates said.
Many parents of children with special needs — regardless of race — struggle to receive prompt diagnoses and services. But for families of color, the challenge is more acute.
“There’s just a lot of systemic racism,” said Kausha King, director of the Community Empowerment Project, a program that provides navigation support and training to Black families of children with special needs in Alameda and Contra Costa counties.