Welcome To Kaitlynn's Place

Kaitlynn was born September 29th, 2004. We have seen neurology specialists from St. Louis to New Orleans since she was born. Unfortunately, we still do not have a definitive diagnosis for Kaitlynn. The best guess her doctors have to offer is mitochondrial disease.

What State You Live In Matters For Special Needs Families

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Many people do not realize the fiscal burden of caring for a handicapped child. Even with private insurance, SCHIP, or Medicaid, a special needs child usually equates to higher medical expenses for the family.  This is especially true for low -income families that spend a disproportional  share of their income on their child’s health care. The financial hardship not only has a negative effect on the child getting the care they need, it also effects everything from family structure to meeting siblings needs.

Every family with children is going to have out of pocket medical expenses, but where a child without medical problems may have a cold per year and see a pediatrician occasionally, many special needs children have multiple bouts with illness per year and become a decoration in their doctors’ office. The gas, lodging, and meal expenses while traveling to see specialists can add up quickly. Modified housing and vehicles, adaptive equipment, adaptive toys, special clothing needs, incontinence, respite services, therapy, etc… all puts an added cost on families that are often struggling to hold on to their sanity as is. 


State and Federal representatives continue to ignore this problem, despite an overwhelming amount of supporting research. Medicaid and SCHIP programs need to be strengthened to reduce some of the burden families with special needs children shoulder. Instead, with state budget shortfalls and a steadily increasing federal debt, cutbacks to these programs are compounding….not helping special need families.


A recent study in the journal Pediatrics found that:  61% of all low income special needs families reported having some out-of-pocket health care costs for caring for their children with special needs. Of these, 30% reported  yearly expenses of $250-$500, and 34% exceeded $500 for the year. Breaking it down, the percentage of low-income families who have out-of-pocket costs for caring for their special-needs children varies greatly from state to state. For example 33.5% do in the District of Columbia compared to 84.4% of Utah families. So, where you live really does matter when it comes to how 'good' the services are.

Find out where your state ranks with financial burden here.

3 comments:

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