Here is the text of an email my wife sent out to her family and friends this morning, celebrating the good news that our daughter, Rhiannon, has just received funding from the state of Georgia that will enable her to participate in a day-support program starting in July. Not only will this enable Fran and me to keep working, but it also saves Rhiannon from the fate that would befall her if she had to stay at home (either with one of us or with an in-home caregiver), where her lack of skills would pretty much condemn her to a life of watching TV or playing elementary-school-level computer games. The funding was never a slam dunk: about three times the number of Georgia citizens need this kind of support than there is available funds. What’s particularly miraculous is that the word on the street is that funding generally goes to those who are most aggressive in advocating for it. Aside from just a couple of phone calls and emails and attending one rally in February (where the above photo was taken), our primary form of advocacy has been prayer. Clearly, that kind of advocacy works wonders of its own.
Here’s Fran’s message:
Most of you have been praying for Rhiannon to get the Medicaid Waiver support she needs so that she would have someplace to go when I have to return to work in August. Rhiannon has been receiving in home help from a CNA through services from the elderly and disabled (CCSP) for almost two years. This program has been a lifesaver for all of us as it helped greatly with the daily caregiving duties that Rhiannon needs and gave Carl and I a break from having to do all of Rhiannon’s care alone. But the CCSP program could not provide enough hours to cover Rhiannon for our workday. The CCSP waiver conflicts with the Day Support Program because of some red tape issue and so we knew we would have to give it up when we got the day support waiver. It has made such a big difference in our lives that we could not imagine how we would function during the school year without it. Earlier this year we were told by one person at the Region 3 Regional Board that we could only receive one of the waivers and in fact Rhiannon needs two, the Day Support Waiver and a Personal Care Waiver (which pays for a Certified Nursing Assistant to continue to come into our home and stay with Rhiannon after the Day support program so that I can finish my work day).
I just wanted to let you all know that we received a phone call yesterday (6/05/07) from the Regional Board and we were told that Rhiannon qualifies for and will receive both the Day Support Waiver and a Personal Care Waiver. We will meet with a committee from the Regional Board Office to complete the necessary paperwork and write an ISP or Individualized Service Plan on June 25th. I expect the waivers to begin on July 1st when the new state budget funding begins. This is an enormous blessing as Rhiannon’s day to day care needs are extensive. The day support programs alone cost almost $1000 a month.
Thank you all for your continuing prayers and support in this time of transition. It has been wonderful for us to see how excited Rhiannon has been about completing her school career and graduating. We have all been waiting to hear about what funding we would receive so we could plan for what Rhiannon would do while I worked everyday. We have been investigating to see what programs are available and we have found a program that we believe will work well for Rhiannon. We are now closer to getting that set up since we have been assured she will have the waivers. But this is still a time of great transition as we get all the pieces into place and set up a new schedule and routine.
Please continue to pray for Rhiannon and for all of us as we move through this transition one step at a time. We hope and pray that Rhiannon will really love her new day program and that her behavior will be good. We are also hoping for the scheduling and transportation to all be worked out smoothly. Finally, as we move from one program to another we may need to find and train a new CNA to work with Rhiannon and her schedule. These are still really big steps and we would appreciate your ongoing prayers for guidance and support.