Desperately Seeking Services
First published September 23, 2011.
Cody graduated high school in May 2004. Perhaps to most people it would have been more of a mock ceremony than a celebration. But to us, we had reached a most significant milestone.
We had the option to leave Cody in public school until age 21. But I, in particular, felt he had gone as far in progression as he was going to with the public school curriculum. Leaving him there would have been equivalent to leaving a 5-year-old child in day care when he was ultimately ready for kindergarten.
Little did we know, the fight we would have to face to get him into a program that either we could afford to pay for out of pocket, or that state funds would subsidize.
Cody needed help with social skills, daily life skills and he still needed help with basic academics that all of us use in everyday life. And my hope was that day habilitation services would be available. Day hab was equipped to address all of Cody’s needs and it would provide one-on-one attention in our own home. It was the perfect solution.
We then learned how expensive these services were going to be and it quickly became evident that it was not going to be feasible for us to pay for them based on our income. So, the next step was going to the appropriate state agency which was, to our surprise, a part of the Division of Aging. The process involved getting Cody enrolled and approved for Medicaid, then the state would assign a case worker to evaluate exactly what Cody’s needs were and find programs and services which state funding could cover.
At the initial meeting with the first of Cody’s case workers, we were filled with hope that the process of getting him enrolled in a good program would be one that would go smoothly and be accomplished in an expedient manner. That did not happen The State of Missouri was virtually broke. Budget cuts were being passed right and left that were taking benefits and services away from people, not handing them out. After about the fifth meeting, it was clear to me Cody would not be enrolled in a good day hab program anytime soon.
Over the next seven years, Cody, my husband Bill and I met with many caseworkers. It seemed that about every six months we would receive a letter stating that whoever was Cody’s present caseworker was being reassigned to a different area, or they were leaving the agency. It began to seem as though we would continue going to meetings and continue voicing our concerns and frustrations, all to hear the same story we had heard countless times before. All of the caseworkers were both pleasant and compassionate. They all appeared to try very hard to look for ways to find funding for the services Cody needed. And time after time, the phone call came that funding had been denied because Cody did not meet the criteria of being an at-risk client. He had a stable home, and was adequately being provided for in the way of food, clothing, medical care, and all other necessities. In other words, if he was not in jeopardy of being homeless and hungry, or he was not profoundly challenged, then he had to stay on the state’s waiting list. I had begun to lose hope.
I tried researching online to see if there were programs we had yet to hear about. Occasionally, I would find something that attracted my attention. But by the end of a phone call to the establishment, it always ended with disappointment. Either the fees were too expensive or the structure was not what Cody needed.
Finally in May 2011, we saw light at the end of the tunnel. Governor Jay Nixon had vowed to get everyone who had been approved for services, but had yet to receive them, off the waiting list. Funds were released and Cody was approved for a grant of $12,000 per year. When the first of June arrived, Cody was anxiously awaiting the arrival of his first staff, in his first day of services with a local Community Rehabilitation Provider (CRP).