special needs

‘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 Make it Easier for Kids with Disabilities to Get Care

California has a variety of programs aimed at supporting the health care needs of children with complex disabilities. But accessing and utilizing these programs is complicated and time consuming.

The California Health Report spoke with several experts and disability advocates about what can be done to ease the burden on families and ensure children with disabilities get the care they need.

Analysis: Day Cares for Medically Fragile Children Are Closing. Here’s How to Save Them

Children who need medically intensive care cannot attend traditional day care programs. California has an option for these kids, called Pediatric Day Health and Respite Care facilities.

But the amount the government pays these facilities to care for children has not kept pace with inflation and rising staffing costs. Because of the stagnant rates, California’s pediatric care facilities are in danger of closing.

California Finally Pays for Summer Programs for Children with Disabilities, But Access Hurdles Remain  

The state cut funding for social and recreational services for children with disabilities 13 years ago, which meant regional centers could no longer pay for summer camps, swimming lessons and other recreational programs for children with disabilities.

Now the centers have to figure out how to reinstate them, which has led to glitches for families trying to access these services.

Analysis: The Formula Shortage Is Also A Disability Rights Issue

The baby formula shortage wreaking havoc across the United States is terrifying for any parent who relies on infant formula to feed their child. It’s especially calamitous for babies and children with special health care needs who rely on special prescription formulas that have also been impacted by the supply shortage.

The shortage highlights an ongoing, systemic failure to ensure vulnerable children have secure access to medically necessary, life supporting products and equipment.

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