Remembering and Reflecting on Katie Beckett
Last week, Katie Beckett passed away. Most of us know these two words by the word that follows them, "waiver." The Katie Beckett Waiver. Thousands of kids in Georgia were able to receive Medicaid-funded healthcare and support because of her situation, her intrepid mom Julie and President Ronald Reagan, who recognized that approving an eligibility category to support Katie's care at home instead of in a hospital was good for everyone – the family, the Medicaid system, the hospital and most importantly, Katie.
Georgia had a pretty amazing intersection with the Becketts. A few days ago, I was talking with Mark Trail, who was the Medicaid director back when all of this history happened, and I referred to it as "a couple of turns around the block regarding the Katie Beckett issue." He laughed and said that was a rather nice way to put it. The more accurate description is that the Medicaid agency at the time changed the eligibility criteria, clamping down on the window to Medicaid that children had to pass through in order to get support. Virtually overnight, more than 3,000 children were determined to be ineligible for Medicaid, throwing them and their families into crises.
The Georgia Council on Developmental Disabilities (GCDD) spearheaded an advocacy and education campaign, with the help of a few vocal and well-informed parents, to convince the Department and then the legislature that this access to Medicaid was a good and cost-effective way to address the needs of these families. We held rallies and press conferences; we were featured in interviews on TV, radio and in the press; we held legislative lunch and learns, did surveys and testified in front of the Department of Community Health Board and several committees in the legislature. At one point, we flooded the Governor's Office with so many phone calls that they called GCDD's offices and said, "Call them off. We got the message."
Julie Beckett helped us on the ground in Georgia. She came to Georgia a few times and helped host a lunch and learn with a legislative committee, speak to the press, meet with Medicaid and meet with a group of parents and policymakers. She got angry, and let the policymakers know it. I even remember she said at one point, "Spina bifida is the most serious developmental disability you can have and still be alive." The Department had previously denied several children with spina bifida continuing Medicaid support, claiming they were "stable." They all had shunts and a history of hospitalizations, and we knew with these kids that anything could happen that could land them back in the hospital in a moment's notice. Julie's indignant declaration carried weight. We got the Department to back off their plans to charge a premium for the Medicaid participation, but unfortunately we could not get them to change the criteria. In response to the trauma experienced by these families, Jack Hill, Chair of Senate Appropriations, offered to put in $4,000,000 to address the needs of the children who were losing eligibility from the Senate floor during approval of the state budget. Additionally, in a partnership, Representative Ben Harbin, Chair of House Appropriations, added another $3,600,000. This was unprecedented. Some of the money was designated to provide immediate cash assistance to the families who had lost their Medicaid. This was done through a loaded Visa card that the families could use to buy the services and supplies that had been provided through Medicaid. It was s stopgap, but it helped. The rest of the money was put in the DHR budget, and Commissioner Walker was charged with setting up a work group to establish an endowed fund that would continue to provide services and supports to families whose children had been denied Katie Beckett Medicaid and who did not qualify for any other government assistance. This fund, "Champions for Children" is coordinated and distributed by Easter Seals of SW Georgia and is the most flexible family support funding that exists in the State.
I wanted to share this information for a couple of reasons. First, to acknowledge and thank Katie and Julie Beckett. The establishment of the Katie Beckett access to Medicaid is one of the best examples we have of the government responding to the needs of people who are vulnerable, in a way that serves all parties well. The parents who testified before our legislature were able to show that despite their middle class incomes, the medical needs of their children threw them into debt, compromised their employment, deprived their other children of support and priced them out of the private insurance market. It was also apparent that the State, in an institution or hospital, could never replace the type of care that these children benefitted from if they could grow up at home with their families and it was more cost-effective.
Second, this story reminds us that this is a lesson Georgia needs to keep learning. We are not doing that well for our children with special needs, particularly those with significant medical issues. We at GCDD, our federal partners and other child-serving entities are continually contacted by families whose children have had treatment delayed or denied, got dropped during transitions, have had their nursing hours cut, been determined ineligible for Medically Fragile Day Care programs, have few or no mental health or behavioral supports available to them, or even worse, families who felt the only option they had was to give their kids up to State custody or nursing homes because they could not cope anymore.
Trying to save money by limiting services for young children with special needs will always cost the State more money in the long run. We need a comprehensive, responsive, cross-agency strategy for serving children with critical needs that supports them to reach their full potential and keeps them and their families economically viable and in the community. The Children's Freedom Initiative, a collaborative effort of the Federal Partners and our friends and allies, is gearing up for another round of advocacy on behalf of these vulnerable children and families. Please stay tuned.
- Pat Nobbie, GCDD Deputy Director
