Katie Beckett program important to many

By Jessica Harris

Staff Writer

jharris@oglethorpeecho.com

            Imagine being a person with a middle-class income having a child born with a lifelong, crippling disease or disability. Imagine that child needing treatments twice a week that cost $7,000 a piece. Imagine countless surgeries that cost as much as $250,000 each time. Now imagine only having primary insurance coverage whose lifetime maximum is met within a year or two.

            That is the situation that thousands of parents in the state are facing right now. Until last year, these parents were able to receive Medicaid coverage as their secondary insurance through the Katie Beckett Waiver program, which was established in 1982. This waiver allowed parents of special needs children with permanent disabilities to receive care at home instead of being institutionalized, and receive coverage even though they make too much money to normally qualify for Medicaid.

            Katie Beckett has been so important in the lives of families with special needs children because the monthly co-pays for doctor’s appointments, hospital visits, and prescription medicine alone can run in the thousands. In addition, there are countless out-of-pocket expenses every month that nothing will cover, not even Medicaid.

            Heidi Moore, mother of six-year-old Jacob, who has Down Syndrome, said that her son has had ten surgeries and 29 procedures in his young life, and without Katie Beckett as their secondary insurance, her family would have gone bankrupt the first year of his life. Their out-of-pocket expenses each month run over $1,000, and the surgeries and procedures are astronomical.

            The problems began last year when the state realized that it was not properly enforcing the criteria for those receiving the waiver. To correct the problem, the state actually enforced the guidelines too strictly and began denying children that had been receiving Medicaid and obviously needed the coverage. Families are required to reapply and qualify for coverage every year, and there have been over 1,600 denials since May 2005.

            Moore knows of countless families whose children have been denied unjustly. One particular example is a young girl that is on a feeding tube, is blind and deaf, has cerebral palsy, and is in a wheelchair among other things, and yet she was denied when her family reapplied under the newly enforced guidelines. Her family later appealed the decision and was accepted, but as Moore said, “She should not have been denied to begin with.”

            Now, through the work of parent groups such as Moore’s Grassroots Advocacy, the state is reviewing its criteria for receiving the Katie Beckett waiver and plans to make changes to allow more children back under the coverage that they need. However, until those criteria are announced, the families have no way of knowing who will be accepted, and they will continue to struggle from day to day to provide for their children with special needs.

            On January 19, over 130 parents and advocates went to the state Capitol for the Katie Beckett Waiver Public Hearing. Several parents presented their stories and information to the legislators to request changes to the current system. A little over a week ago, the State Senate passed an amendment to allow for an additional $3.6 million to the Supplemental 2006 budget for families that do not qualify for the waiver under the criteria that have been changed.

            This amendment will now have to go to the House for approval, and it only applies through June 30, 2006. Although Moore said she was very excited about the news of the amendment, “there are still a multitude of issues that need to be resolved involving the eligibility criteria and those serving on the application committee. It’s hard enough to raise a special needs child without having to deal with insurmountable medical bills, and this is truly a dire situation for the families affected.”

            Nikki Johnson-Duffell is the mother of Wright, who is four years old and was born with a chromosomal deletion. He has been receiving Medicaid through the Katie Beckett waiver since he was six months old. Duffell has already sent in Wright’s application to again receiving Medicaid this year, but has yet to hear back. She said, “I am praying that his re-application will be approved. I can’t imagine how we will continue to provide him the level of care he needs without Katie Beckett.”

            Kimberly Frey, mother of Ellie, is one of the parents in the area who has not had a good experience with the waiver. Ellie has been in the ECHO recently due to the family’s need for financial support from the community. Ellie needs a kidney transplant within a year, and the Frey family has no insurance.

            After nine months of applying and waiting, Frey received word that Ellie had been accepted to receive the Katie Beckett waiver. Then, Duffell called Frey to inform her that the criteria guidelines had been changed, and both their children were in danger of losing their coverage because the children are not “wheelchair-bound” and do not need a nurse at their side 24/7. Frey discovered a few weeks later that Ellie had indeed been taken off Medicaid and moved to PeachCare for Kids without any notice. Frey has since called to inquire about the waiver and why Ellie was taken off, and she has not received any information about anything.

            Katie Beckett was designed to support families and children with special needs in order to build success in the future. Moore said that she and all the other advocates only ask that the state help their children achieve success by providing them with the financial help they need. She encourages all families with special needs children to contact their State Senators and Representatives and inform them of their situation.

            Moore stresses that the majority of waiver families are “hardworking, middle class, taxpaying, voting citizens that never asked anything from the state until they had a child with a disability.” For more information on Katie Beckett and the advocacy program, contact Moore at heidijmoore@comcast.net.