children with complex medical needs

Parents Caring for Children with Disabilities Have Some Advice

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.

Nakenya Allen outside her home in Martinez, California. Martin do Nascimento / Resolve Magazine

How Families Are Fighting Racism and Disability Discrimination

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.

Kids Who Rely On Ventilators Can’t Get Enough Supplies, Putting Their Lives At Risk

Amid the COVID-19 pandemic, demand for ventilators and accessories has soared. As a result, families caring for medically fragile kids are being forced to ration and even reuse parts.

At least 3,000 children in California rely on ventilators, according to the California Association of Medical Product Suppliers, and many of them are facing a shortage of the supplies that help keep them alive.

Coronavirus Disrupts Services, Heightens Risk for Medically Fragile Children

Even though children in general are less likely than adults to develop serious illness from the coronavirus, that may not be the case for kids with compromised immune systems and complex health care needs, medical experts said.

Still, families of children with complex health care needs are, in some ways, more prepared than others to handle the threat of coronavirus infection. Hand washing, disinfecting and caution about venturing outside are already a reality.

Few Home Nurses Available to Care for Children With Complex Medical Needs

Across California and the country, families with children with complex medical needs struggle to find qualified nurses to care for them. Historically low pay rates for home health nurses, a lack of pediatric training for in-home situations, and a disjointed system for finding caregivers has left many families without the nursing care their children desperately need and are entitled to, experts said.

X Close

Subscribe to Our Mailing List