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Kristi Berning: Roadblocks to care

  • Published Sunday, April 28, 2013, at 12 a.m.

There has been a lot of banter back and forth about how the KanCare implementation is going. Here’s my experience:

My daughter has a severe seizure disorder. As generic forms of her anti-seizure meds have become available, we have tried each of them. One of these meds was so much less effective for her that we couldn’t raise the dose enough to get the same effectiveness without more side effects, too. She eventually was put back on the name-brand drug. This is a med that she has responded to well since 1996.

Yet I couldn’t get her medication refilled when she ran out. Please note this is a seizure medication.

I called the pharmacy to order a refill a week before we ran out, and the pharmacy later indicated it was on hold for pre-authorization. KanCare’s managed-care organization said it couldn’t approve the medication until it received more paperwork from the providers.

We had a problem in January because my daughter takes two strengths of this name-brand drug to come up with the right dosage. The MCO kicked it out because the provider only did one pre-authorization for the drug, rather than two (one for each strength). Now the MCO is requiring even more from the provider than last time.

I asked the MCO: If my daughter needed and received the larger strength of this med earlier this month in the name brand, doesn’t it make sense that she would need the other, smaller strength in name brand as well? And shouldn’t whatever criteria it used to refill that larger strength earlier this month also apply to the smaller strength?

How many times and ways must this be addressed? The providers gave the state the information required to put my daughter back on the name brand long ago. A couple of months ago, the providers gave the MCO the information it requested to let her continue taking the name-brand drug. Now the MCO comes back to the providers with more demands.

My provider told me Friday that the information had been sent and it was denied without additional records being sent. The MCO said it couldn’t do anything, as it hadn’t received the information. I responded that the provider already had complied and all the MCO had to do was approve it. The MCO wouldn’t let me speak to the pre-authorization department.

When people in the state administration talk about how well KanCare is going, and how we have misconceptions about what it will be like when MCOs control long-term services for people with intellectual and developmental disabilities as well as their health care, it makes me truly angry. “Cookie-cutter” systems do not provide the individualized services that people with intellectual disabilities need.

So this is going well? It’s OK for me to spend hours on the phone, instead of at work, just trying to get my daughter’s medicine refilled? It’s OK that I was frustrated to the point of tears (which isn’t fun to admit) and still couldn’t get her medication? It’s OK to make repetitive and increasing demands on the providers that prevent her from receiving medication on time? Where are the “care coordination” and “improved communication between providers” that KanCare was to offer?

Rather than providing better care coordination, KanCare is creating new roadblocks, and making it more difficult to care for my daughter and get the care she needs from providers.

Administration officials say KanCare implementation is going so well. Maybe it is for them. However, it is not going well for the consumer.

Kristi Berning lives in Newton.

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