“Bernie, We Need to Work on Your Tooth Brushing Program”: Life-sharing, Love and Medicaid Funding

There are times when so-called natural supports or just friends seem to make sense over the professional, clinical, or rule bound approach to life. Living circumstances are one of the most common places in which the disconnect between being a client and being a neighbor can be evident.

Bernie and Jeanette were great friends and had been roommates for three years, since Bernie’s liberation from the SONYEA (the State of New York Epilepsy Asylum), known as regional centers in Colorado. Bernie and Jeanette went to movies, took hikes in the nearby hills, picked tomatoes for spaghetti sauce, and talked about the people around them. Bernie worked downtown in a segregated workshop and visited a quick-stop type store at the transfer location on his bus route. All he needed there were cigarettes and Vicks cough drops and friendly cashiers. Life was good, except for the sheltered workshop, of course.

The home-like environment in which Jeanette and Bernie lived was funded 80% by Medicaid waiver dollars. The comprehensive waiver was supposed to make the traditional Medicaid system user- friendly based on the needs of each state and person being served. Bernie had a lot of goals on his service plan to define the supports he would get from his service agency. There were quality assurance people to make sure health and safety was met via visiting the house but mostly reviewing paperwork. If his goals were being addressed, the service provider indicated that Bernie had a quality of life and there was no need for further effort in his supports or community involvement.

It was tough to bend the Medicaid waiver health insurance bureaucracy to fit the relationship between Bernie and Jeanette. What got bizarre was when there was an inspection of the house and questions posed:

  • What has been the progress on the tooth-brushing program?
  • Is there any change in Bernie’s ability to make change and spend his money appropriately? Does he buy anything other than Vicks and cigarettes?
  • Is he independent on RTD routes so he can get to the shopping malls?
  • Is his grooming any better – he seems to be wearing the same sweater each time I see him?

Reality to the above:

  • Goal #1 – Bernie will brush his teeth at least twice a day with supervision by staff. Bernie had been on dilantin for seizures for so many years, that the side effects made his gums sensitive and brushing too painful. There was no progress on his teeth- brushing program due to the pain. It was odd to practice tooth brushing after dinner when everyone else was either reading or watching TV and Bernie just didn’t want to do it.
  • Goal #2 – Bernie will learn to make change using dimes, nickels, quarters, one-dollar bills over the next three months. The same person at the neighborhood store sold Bernie his cigarettes and Vicks cough drops daily and always gave Bernie the same change for the his same $10 bill. Bernie didn’t see the need for making change and was not likely to use his fake change program in the evenings when everyone else was reading or watching TV.
  • Goal #3 – Bernie will increase his mobility skills to locations beyond the route in which he travels to work. Jeanette, the staff responsible for this goal, didn’t know how to ride RTD to any location. They had recruited the wrong staff for this task. Bernie was teaching Jeanette what he knew of RTD. Again, goal unmet.
  • Goal #4 – Bernie will choose a range of clothing socially appropriate to the situation. Bernie did indeed wear the same front pocketed-style sweater always, as when he left SONYEA, he had two things in his pocket – cigarettes and Vicks cough drops. These two items were always accessible in his front pocket and due to the intense winters, this clothing happened to always be a sweater. The range of clothing the planning team was looking for was just not going to happen.

Questions posed by community members to Bernie and Jeanette over time were an indication of the experience of the person asking the question. “Are you a host home provider?” – that typically came from case managers and service providers in planning meetings. “Is Bernie your roommate or husband?” often came from neighbors. Case managers asked if we had a shift-staffing pattern. Neighbors asked how long we had lived together. Psychologists asked what Bernie’s label was and how long he had been on which medications. Neighbors didn’t know to ask such questions. A pattern occurred that the further the person was from the human service system, the more human and logical the questions were.

Amazing thing of it all was that Bernie had begun walking in the neighborhood with Jeanette just because he liked spending time with her and they were friends. This had never happened before with paid shift staff or in other places like SONYEA. It couldn’t be explained – it was the relationship, not the plan, guiding their lives. The miracle was just not under the control of a service plan.

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