I’ve heard from many families about unequal healthcare. A friend in another state who had a terminal illness and diagnosis was delayed due to the type of insurance she had. Another who was told of a possible terminal illness but sent home from the hospital the same day due to lack of insurance. Someone was inadvertently taken to a drug rehab rather than nursing home rehab facility. A child denied dental care due to her disability. Still another child denied therapy because as the insurance rep. told the mom on the phone “he was going to die anyway!”
They call it “health disparities”. Worse outcomes due to inequities in care that can result in increased morbidity (illness) and mortality (yes even dying). Sometimes it’s due to the type of insurance. Sometimes it’s based on race, sex, gender identity, age, disability, or economic status. Discrimination.
Healthcare reform will hopefully address some of the inequality. In the meantime, it’s up to parents to speak up for their children to make sure they get the care they need. I’ve seen posts on blogs, petitions, and social networking. Although it may raise some awareness and could help to vent, it’s frustrating to see all the wasted energy but no action. Support groups are great for empathy, but parents also need to advocate (“to speak for another”) for their children to make things change. In doing so maybe policies change so separate families don’t have to keep fighting for the same issues. And also teach their children “self advocacy” for themselves eventually.
I’m sure you’ve heard the metaphor “the squeaky wheel gets the grease” (if you haven’t, it basically means to make noise to get attention.)
Although this unfairness increases emotions, families may need to take a break and try to deal in the facts. Is it really discrimination or are there no good choices? Will this treatment help or just grasping at any hope? It’s so hard when parents are desperate for anything to help at any cost.
However, there are protections in place and organizations that help. In each state there are Family-to-Family Health Information Centers and/or Family Voices where parents provide free help on healthcare issues to other families. If families feel their rights have been violated, they can call the Office of Civil Rights. For people with disabilities, families can contact Protection and Advocacy. Remember when it’s needed to be the “squeaky wheel” so that your child gets the best care.
Family-to-Family Health Information Centers/Family Voices
Office of Civil Rights
Protection & Advocacy