disabilities

Analysis: California Has the Best Programs for Kids with Complex Health Needs, But We Can Do Even Better

California’s about to bail programs overboard as it works to keep the state afloat amidst a huge budget deficit. It’s a problem, and I’m concerned for some programs that help children with special health care needs.

But I wanted to take a moment to talk about something that I don’t often bring up. Overall, California has the best health care for children and youth with special health care needs.

California Kids Wait Months or Years for Specialty Care. Here’s What Would Help

California has a severe shortage of pediatric specialist doctors. The state has only one pediatric medical toxicologist for all 8.7 million children in California, for example, and one child abuse specialist for every 258,000 children.

The shortfall puts medically fragile children at risk for worsening health and missed opportunities for life-changing treatment and support. Many families wait months — and in some cases a year or more — to get appointments.

‘She’s Taught Me So Much About What Real Courage Is:’ A Window into the Life of a Family Caring for a Child with Intensive Medical Needs 

California has multiple programs that provide support to children with complex medical needs and disabilities. But accessing and making use of these programs is a minefield for many families.

Vivian Vasquez and John Hernandez discovered that for themselves after their daughter, Claire, was born with a rare genetic disorder.

How to Get Medical and Education Services When You Don’t Speak English

The California Health Report spoke with disability rights experts and parent advocates about what families who speak a language other than English need to know about their rights when accessing health care and special education services, and tips on how to advocate for themselves.

Almost half of California residents speak a language other than English at home, most often Spanish.

How Families of Children With Disabilities Can Find Support

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.

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