I am, in the most general definition, a social worker. If I were to get specific, I am a “service coordinator” defined by Medicaid, the government system that pays for the services I provide. My role is to help people with developmental disabilities and their families navigate the twists and turns of a complicated service system called the Office for People with Developmental Disabilities. This system is currently “under construction” by New York State, which has determined it to be inefficient, ineffective and expensive.
I cannot necessarily argue with that statement because it is very costly to provide support to someone in a group home, and the wait list for much-needed respite services is more than 10 years. Still, I can’t help but move forward in this changing system with a healthy dose of cynicism and concern for the people who rely on it for necessary and life-sustaining support.
While the cost to provide supports to people in their own home is just a fraction of the cost, the bureaucracy and red tape one must go through to get that help is overwhelming.
Let me share a story, one that is common in my line of work. Nancy is a mother of two boys. Years ago, she found and married the love of her life. They purchased their starter home and were working to save for their dream home. They had good jobs and big plans. They were going places. Like many young couples, they could not wait to start their family; so they did, having two boys.
Today, Cody is a college student, living a few hours away. He is everything his mom dreamed he could be. Jordan is 15 years old. He was born premature at 26 weeks and weighed just 2 pounds. He has cerebral palsy, a serious condition that results from a lack of oxygen to the brain. He has quadriplegia, a seizure disorder and significant intellectual delays. He cannot talk. Nancy is now his sole caretaker – it is not uncommon for love and marriage to break under the pressure of adjusting to and caring for a loved one.
Nancy and Jordan still live in that starter home, made accessible through environmental modifications and adaptive equipment that allows Nancy to provide total care to her son. Jordan attends a school that understands his special needs and provides a stimulating and caring environment. Nancy gets help from aides who care for Jordan for a few hours so she can go to the grocery store and run other errands. This also gives Jordan some independence and time away from mom, something teenage boys appreciate.
Nancy does not complain. She loves her son and wants to care for him in her home. But she can only do this if she receives services. She is grateful for what she has received so far and does not take that for granted. However, she is not sure why, in a time when New York allegedly values in-home care, that her request for a specialized bed for her son has been denied, a bed that would prevent him from suffocating should he turn in his sleep.
She is frustrated that she needs to go through an appeal process and that the reviewer suggested Jordan sleep on a mattress on the floor, apparently an acceptable, cost-effective solution to the issue at hand. This is not Nancy’s first appeal process, either; she has also had to fight for a replacement wheelchair for her growing son, who cannot walk. The cost of these items is far less than the cost of caring for Jordan in a group home, which is the alternative. The cost of these items is likely less than the cost of the time and effort spent appealing it; from the employees paid to review it to the attorney who appeals it.
I am not sure any logical person would suggest these were unnecessary or frivolous requests. I do not think there is a single person who would deny access to these items if it meant that Jordan could remain at home, in his mother’s care.
The point of the story is this: As New York considers how to meet the needs of people with developmental disabilities in the most inclusive and cost-efficient way, I would ask that it consider how the approval of simple and logical requests will aid in the ability to support people in their own home, which is not only the most cost-effective, but also the desired solution. Nancy and Jordan are just one story in thousands.
Karen Battaglia is director of Medicaid Service Coordination for People Inc. in Amherst.