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Healthcare: Elena’s Story

August 24, 2009

“Tenderness and kindness are not signs of weakness and despair but manifestations of strength and resolution.” — Kahlil Gibran

 My last posting mentioned that Deborah Lisi-Baker, a leader in disability rights and Associate Director of the Center on Disability and Community Inclusion, was inspired by the writings of Kahlil Gibran. We can see why above.

Now let’s look at Elena, a friend of mine who lives alone in the third largest city of a rural state. How are her healthcare needs taken care of? She has a disability and is covered by Medicare and Medicaid. She feels mixed emotions, but is mostly content, about her healthcare decisions. Let’s listen to her story:

“So many of us are happy with our care,” she said. “We feel lucky and very grateful to have the care we do have, if it works for us, as it does for so many.

But what about when there are problems? We sometimes feel we are trapped and voiceless in our healthcare situations. Others in society can get second opinions, change doctors, and refuse treatments.

Some of us on Disability do not know whether we have these choices or not. Doubts or misunderstandings about the quality of care we are receiving may drive some to abandon their treatment partially or completely, or change treatments before they have a chance to work, possibly making a disability worse.

Other Disability recipients, especially those with illnesses like myself, may feel a stigma exists in the healthcare industry about their income or disability and, therefore, they may think their healthcare is inadequate, whether or not a stigma truly exists.

This may cause a downward spiral in satisfaction. I think people on Disability should be given very clear information about their rights concerning their healthcare.

Then there would be the best chance that they can find options in their healthcare (the way others in society find options), and therefore be healthier and happier.”

When asked if the asset limit on Medicaid has impacted her life, Elena said, “So far I have not saved much money, but someday, when I want to save more, it may become a problem. I save about $100 dollars sometimes.”

Elena said she lives Disability check to Disability check. For emergencies, she sometimes turns to family – her car, her teeth and glasses have been her biggest expenses.

She has not saved up an emergency fund and worries that someday, due to costs, she may even be forced to give up driving.

With healthcare costs, she has been lucky. “I got a referral to both my Primary Care Physician and my specialist and even luckier that they would both accept Medicare and Medicaid for payment,” she said. “Other specialists and hospitals almost all have accepted these insurances. Since I’ve been disabled, Medicaid and Medicare have always worked well for me. I have no complaints.”

In fact, Elena praises the care she has received. “Many excellent health care professionals truly seek to serve, no matter what the income of the patient. My dentist is also wonderful and accepts my Medicaid. Because I have bad teeth, I usually use up my Medicaid before the end of the year and have to pay out-of-pocket. I don’t mind because I like the continuity of care seeing my dentist only.”

Elena sums up: “My healthcare situation is good – my ideal would be if everybody shared the same coverage that I have. I truly believe it can be done. Also an ideal would be if I could learn more through preventive care so I could be educated about how to be healthier. These are the dreams of so many Americans, I believe.”

Thanks for sharing your story and your dreams with us, Elena.

Cool wishes,


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