Community Transition Services
By Tim Wheat
Ed Milewski at the Senate Hearing for SB 170
I would like you to read Mr. Ed Milewski’s story about his accident and his “My Unbelievably Long Hill Back” [CPWD Blog Feb. 23,2011]. He tells a good story of his struggles and accomplishments. I only know the story from the nursing home to Ed moving into his own apartment, but I believe it is a good detail to include with Ed’s description.
I met Ed in May of 2009 and like a lot of people I meet, he did not want to live in a nursing home. I always try to explain to people the difference between wishing NOT to live in an institution and being motivated to take responsibility and live independently. Ed said he was motivated.
Early on Ed seemed to me a little bothered by my request that he use the bus. I ask people to “practice not living in the nursing home,” and to get out and do typical things on their own. I also encourage people to “pretend that you don’t live in the nursing home,” to persuade them to make their own decisions and flex their independence. These requests are not just games or another bureaucratic hoop, but I believe it is a good gauge of how someone will do on their own. The individual has little opportunity to exercise their own decision-making in the institution. They have to confront the question of what they will do without staff down the hall to consult on each question.
Ed had used the local paratransit to get to his appointments and he insisted that he could ride the bus and he only used paratransit because it was easier. I believe that Ed had come to a crossroads. He wanted to make the decisions himself but everyone around him was suggesting the easy route and the safe route. Ed knew which decisions the medical staff would support and suggest and they had become the default first option.
The problem was that the safe and easy methods also characteristically would leave Ed to depend on someone else to accomplish the goals. “Special Transit” would provide him with transportation, The Center for People with Disabilities would help with paperwork, and local charities would provide money. Rather than becoming less reliant on others, I believe that Ed could clearly see that he was becoming more dependent on the people around him.
When Ed came to the Center for People with Disabilities to see me I would always ask him if he had gone anywhere on his own. Truthfully, I believe that Ed was becoming angry with me about this question. Ed was working hard at getting out, but I felt that my question was adding to his frustration. Ed was aggravated over the time that it was taking to make this move and some frustration over having to work with other people’s timetables and schedules. In the middle of him trying to pull all this together, I was asking if he had found the time to make exploratory trips on the bus.
In early June Ed agreed to ride the bus with me. What I believe he discovered was that it was not easy; that you have to know schedules and read maps. Using public transportation can raise your anxiety; you can get lost, miss your stop, miss a bus, or take the wrong bus. Especially if you are not familiar with the area you may constantly question where you are as well as having relentless anxiety of how you get home.
However, with the risk also comes freedom. Ed took on the transportation challenge and began to go places regularly by himself. He was able to confront the problems and concerns with practical solutions. Ed learned to back his wheelchair across the street to counteract the crown, turning around at the midpoint of the crosswalk. He worked on his mobility each day although the nursing home had stopped providing him with any rehab. The barriers that Ed had found frustrating began to melt away as he exercised more and more independence.
To me it became clear that Ed was going to make a sustainable home in the community. He had turned a corner and although there was a lot of work to do, he seemed less apprehensive and less frustrated by the goals ahead. Ed no longer looked to me as the expert. He was not dependent on either my suggestions or my timetable. If he did not like my plan, he would make his own.
Ed’s freedom and self-direction did not make him more distant. On the contrary, I believe he found more value in my experience as he took more control of the transition and his life. I became more valuable to him as a guide than as a director. The end result was precisely what the program had intended to achieve: A sustainable move into the community; independence.
Unfortunately it can be easy to apply a more paternalistic approach to the transition and simply attempt to solve the problems that someone faces rather than teach independent living skills. Someone living in a highly structured environment like a nursing facility often does not feel self-assured, ready to make decisions or feels they cannot act without the permission of some medical staff. “They won’t let me,” becomes an isolating mantra for many people and a path to stagnation and failure is simply to wait for someone else to approve your actions.
The final day of August, Ed moved out of the nursing home and into his own apartment in Boulder. I know there was aggravation and confusion but I really don’t remember any big issues with the move. I visited Ed often that month and less so since that time until now I hardly see him at all. I am very proud of the role I played in Ed’s transition out of the nursing home but it is difficult to explain or take credit for any single part of the episode. I have to admit that it was Ed that basically did everything. Ultimately the circumstances that I am attempting to explain here is that by challenging Ed to accomplish what he could, the final success was more lasting and definite.
Ed and Sen. Agular