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Column on Katie Beckett Response

By Jessica Harris

Staff Writer - Oglethorpe Echo Newspaper

jharris@oglethorpeecho.com

            Since I began working at the Echo last August, I have received responses to articles I’ve written on occasion. Usually they consist of a phone call or seeing a person face-to-face who thanks me for writing the article and getting the word out about whatever event they’re having or issue they’re facing.

            Sometimes I even receive a negative response, although this has only happened once or twice, thankfully. These are typically unjustified and short-lived. Until recently, however, I have not received response to an article that has touched me and truly made me glad that I was able to be a part of something in some small way just by making it known to the public.

            This past week, I wrote an article that appeared on the front page concerning the Katie Beckett Medicaid Waiver. Thousands of families across the state have depended on this waiver to help them care for their children with chronic, lifelong diseases that require large amounts of medication, treatments, doctor and hospital visits, and procedures. These needs add up to astronomical bills that primary insurance cannot cover.

            These families had been relying on the Katie Beckett Waiver as their secondary insurance to pay for many of the medical bills incurred. Once the government began enforcing the criteria to determine who received the waiver too strictly, children began being denied left and right for coverage that they desperately needed.

            The day after my article appeared in the paper, I came to work and opened my email to discover I had over thirty emails from parents of special needs children. These parents had all received an email with my article attached from Heidi Moore, who is spearheading the grassroots advocacy movement to have the criteria for Katie Beckett changed to include the children that were once receiving the coverage.

            Every single email thanked me profusely for publicizing the issue and making everyone aware of the situations these parents are facing. What truly touched me about the emails, though, were the personal stories so many parents shared with me about their children. Their pride and love for their child was evident in their words, and their desire to do everything they could to insure the health of their child was palpable.

       Dawn Shepherd, mother of four-year-old Garrison, said, “My husband and I have not slept through a night in four years due to our son’s cerebral palsy and seizure disorder. Most families that live with the kind of physical, emotional, and financial stress that we have end up in bankruptcy or divorce even with Katie Beckett’s help. We cannot push these families over the edge. They need glue to help them stay together. For us, it is God and the Katie Beckett waiver that help us get through.”

            Karen Beauvais of Acworth, GA agreed with Shepherd’s consensus about the financial strain of a special needs child: “We have a son with Autism. Our self-pay insurance has gone up in price past our mortgage payment. Our son requires weekly therapy and thousands in out-of-pocket care for metabolic issues. If not for his Katie Beckett speech therapy he would never be talking today. Autism strikes 1 in 166 children and has been on the rise. We have literally emptied our savings to help him.”

            Almost all of the parents that emailed me stressed the fact that they were taxpaying, voting, middle-income citizens that were only asking the government to help them help their children have the best life they could considering their situations. Jay Ulrich, father of a ten-year-old with moderate Cerebral Palsy, said, “We did not seek to live off the government, or anyone else. My wife and I are middle class, hard workers, trying to teach our son independence now, so that society doesn't have to care for him later. But without Katie Beckett, he will not receive all the therapy he requires, the medication he needs, and the support items, without nearly bankrupting us. We work hard and didn't want to use Medicaid, but at some point we were forced to swallow our pride and do what we must.”

            Several parents I heard from had already received an initial letter of denial and had appealed that decision. Their appeals were under review, and they were simply waiting to hear whether they would be denied for good or would actually receive the coverage they originally had. Allison Valdes of Alpharetta has a four-year-old with Cerebral Palsy and a seizure disorder. She has appealed the first denial she received and is waiting to hear the results.

            She said, “I've only asked for assistance for Reagan with his therapies that our
insurance doesn't cover, not everything I could claim with our Katie Beckett coverage. We
don't abuse the system and only ask for what we really need so that there will be funds for everyone that needs help. If the politicians making these decisions to cut funding for this program would come out and see first-hand how their decisions are affecting families, not
just some numbers they see on a “report,” they would feel very differently about their decisions.”

            Chance and Ann McColl are one of the parents who have received their final denial for Katie Beckett this month. Ann said, “Our eight-year-old daughter, Faith, has Mitochondrial Disease. We are devastated that we have lost this wonderful coverage. We aren’t sure what we will do when our 20 visits run out and our daughter is no longer able to receive the therapy she needs so desperately. We just can’t afford the $240 per therapy three times a week on top of all her medication and hospital bills.”

            Another parent with a child with Cystic Fibrosis did not find out that their Medicaid coverage was canceled until they went to a pre-op appointment and were told that their Medicaid was being denied. It is blatantly obvious that something must be done within the system to make sure that these children do not “fall through the cracks” and go without the coverage they so desperately need.

            Changes are currently being made to the Katie Beckett criteria that will hopefully reinstate many of the children that have been denied and make it possible for others to receive the proper care needed. Until then, all the families can do is continue writing letters, visiting legislators, praying, and waiting.