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KidsData

Who are the 1.4 million children in California who have special health care needs?

In the 2nd installment in our series, KidsData News is examining what the data tell us about these children, who represent 16% of all Californians under age 18.

Read here: bit.ly/4asK15u

@pediatrics@a.gup.pe @edutooters

An estimated 16% of all California children have special health care needs. That means 1.4 million kids are at higher risk for a chronic physical, developmental, behavioral, or emotional condition & require supportive services.
UC Access Now

@KidsData @pediatrics@a.gup.pe @edutooters Important semantic point: Disabled people's needs aren't "special" just because systemic ableism maintains systems that do not take us and the full spectrum of humanity into account.

Apr 09, 2024, 10:24 PM·Public·Web
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KidsData

@ucaccessnow @pediatrics@a.gup.pe @edutooters

Thank you, truly, for your feedback.

We strive to resist both systemic and internalized ableism and are open to suggestions.

A little bit of background before we ask the important question...

We're not using CSHCN interchangeably with disability (though they are related). We're referring to a specific federal definition “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally."
ncbi.nlm.nih.gov/books/NBK1321

So now the important question:

Is there a term you'd recommend?

NCBI BookshelfChildren and Youth with Special Healthcare Needs, Then and NowFor most of the 20th century, most congenital organ and systemic problems proved fatal early, so “children and youth with special healthcare needs” – a term that was not fully defined or used until the late 1990s – consisted mostly of those with relatively stable motor, sensory, or neurological conditions2. The Federal Children’s Bureau, established in 1912, was the first government program to formally serve children with these complex, chronic health issues.
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UC Access Now

@KidsData Thanks for asking.

Those things are disabilities. Learning disability, mental health disability, chronic illness, physical disability...it's all different forms of disability and the needs are needs, not "special needs" simply because the system wants to other us.

Yet it's true that programs & grants have terms in them that are ones we ought not to use, but are forced to.

We'd suggest treating it the way you would if you were describing a community that prefers different language than what old gov programs are using. Use the old term only when having to refer to a specific old program, but use disability (temporary and/or permanent) when referring to the category. And of course more specific terms like "chronic illness" when only talking about chronic illnesses, for example.

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