children with special needs

Analysis: Care for Children with Disabilities Is Infrastructure, Too. Let’s Invest in it.

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.

Some Kids in Long-Term Care Facilities Didn’t See Parents for More Than a Year

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.

2. Parent advocates with the organization Integrated Community Collaborative speak with Latinx families during a 2018 event in Huntington Park about how to access Regional Center Services for their children. Photo courtesy of Integrated Community Collaborative.

For Spanish-Speaking Families, an Uphill Battle for Special Needs Services

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.

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.

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.

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