The following is a submission or profile of an affected community member as part of the Your Soapbox feature, which explores the experiences of people in North Carolina through their own words.
Cuts to Medicaid Will Devastate the I/DD Population and Particularly My Son’s Quest for Independence
Yes, I am on a rant. For 25 years, I have fought school systems and the system in general. I have fought for one of many reasons. The one reason is my 25-year-old son, David Maennle, who has Down Syndrome. The many are his cohorts who likewise have Intellectual and Developmental Disabilities. David has been one of the lucky ones. He was approved for CAP-MR, now known as NC Innovations, a Medicaid waiver program which has allowed him to have supports to enable him to live a full and productive life.
These supports have kept him engaged in his community. Because of these supports, David was able to successfully complete a two-year post-secondary education program at Western Carolina University in 2013. Because of these supports, he has obtained and successfully maintained a job at Graham County EMS in Robbinsville, N.C., for the past year. He has made life-long friendships, and he is happy. Also because of NC Innovations Supports, David is continuing his education, and he is giving back to his community by volunteering each week in his community. And, lastly, because of these supports, David is working hard to hone his independent-living skills so that he can live independently in his own cabin in our mountain community. The hope is that if something happens to me, he will not be damned to a group home or, worse yet, he will not have to put into a nursing home.
David is fulfilling every dream I formulated for him. He has a vision for his future. He is happy, healthy and a contributing member of his community. He is a success story! And his success story is a success for the State of N.C. and the Medicaid budget! How do I know this? Because I am a bean counter by trade, and so I researched the cost of David’s current NC Innovations Plan as compared to the cost to Medicaid if he were warehoused in a group home and a sheltered workshop. He languished one year in a workshop, and while he had been mostly independent before he went there, he suddenly needed full supervision with hand-over-hand assistance in the workshop. This allowed the workshop to bill Medicaid for each hour he was at the facility. In addition, while there, he lost important social and communication skills, gained weight and was unhappy and lonely. The cost of this placement per year exceeded his current placement by $100,000 annually.
Without appropriate support such as what he is getting currently, he will lose his employment and daily living assistance which keeps him healthy, active and contributing. He will become more dependent and will end up costing the system much more. Our legislators, once again, are taking a short-term view of a long-range issue, and they will, in effect, take the opportunity of persons with I/DD back 50 years! In addition, this will end up costing the state much much more than supporting these persons today!
I am appalled at their attitude, and I am letting these facts known to any and everybody who knows David and what a success he is. We deserve to know that we will not tolerate our state legislative leaders balancing a budget they BROKE with regressive tax policies and prioritization toward corporate welfare on the backs of persons who are least able to voice their dissent. I am standing as a VOICE for these people, and I refuse to back down. I intend to make sure that my voice is heard in the voting booth. Art Pope, Governor McCrory, you are a shameful excuse for leaders, and we will see you leave Raleigh on a rail! And you folks in the General Assembly, you can leave right behind them! We will take our STATE back to what it was known for: A progressive leader in education, industry and services to those who cannot speak for themselves!