Living Independently

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

Around Colorado, Independent Living, System Change CTS, Ed Milewski

Colorado announces $22 million federal grant to improve options to expensive nursing facilities.

By Tim Wheat

Colorado State Capitol

The “Money Follows the Person” grant will help Colorado improve the state’s ability to provide home and community based care as an alternative to undesirable institutional placement and help move people out of expensive nursing homes into their own home. Colorado CO-ACTS program was awarded the grant by the federal Centers for Medicare & Medicaid Services and their goal is to transition approximately 500 people or more back to the community over the next five years.

CPWD has worked with the state to develop a strong grant and we applaud the state’s efforts. Our perspective has always been to end the institutional bias in the federal Medicaid program so that people with disabilities can be a part of the community and live in our own homes. We support the goal of CO-ACTS to transform long-term care services and support from institutionally-based and provider-driven care, to person-centered and community-based care.

“CO-ACTS is the solution for giving clients needing long-term care services independence, choice and dignity,” states Sue Birch, executive director. “In order to support our clients in receiving the care they need in the setting they deserve, we will build upon our existing community-based services and, at the same time, save the state money.”

The federal and state funded program is a demonstration project to prove the financial viability and structure will work in Colorado. The ultimate goal that CPWD hopes for the program is that no person with a disability would have to leave their home and community to get services and that those services become the default over expensive institutional facilities.  Currently, federal Medicaid must fund institutional options, like nursing homes, while preferable alternatives are only optional Medicaid services that may be limited or not even offered.

“CO-ACTS is a multi-agency effort. We have been working with the Department of Human Services, the Department of Public Health and Environment, the Department of Transportation and the Department of Local Affairs,” said Tim Cortez, the project director; “to ensure that we have the appropriate community-based long term care services and supports in place along with housing and transportation. All of these state agencies are working together to make certain that we have a strong safety-net for those individuals returning to the community.”

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By Ed Milewski

Editor’s Note: Ed Milewski will give testimony tomorrow in front of the Colorado Health and Human Services Committee on SB11-170 a bill to bring parity to Nursing Home Medicaid reimbursement and Home and Community Based Services. Tim Wheat of CPWD writes a companion piece to this about Ed’s nursing home transition into the community: Community Transition and Sustainable Independence.

Photo of Ed Milewski

I had told my daughter I would join her on her first century bike ride at the end of October 08. We had done a metric (61.5mi) before (Aug. 9 97) but she had never done 1oo miles before; and I’d gotten a bit out of shape my self. I’d been living at a Buddhist retreat center for about two years. So in April I started training.

It was May fifth, and a beautiful Southern California afternoon so I took a short twenty-five mile training ride from Morro Bay up the cost on Highway 101. I decided to turn back at the top of a short hill of about four hundred feet high. I just then realized that I’d forgotten to retrieve my mirror for my glasses from storage (that I usually use un road rides). Checked both directions and started to turn, BIG MISTAKE; I should have gotten off the bike and been able to fully check out both directions not having the mirror. I hadn’t noticed the car coming up from behind! (I’ll skip all the ifs; would have, could have, should have, ext. as they don’t really amount to a thing in the end. Except as above for fellow cyclist.)

About a month later I found out just how big a mistake it was. I awoke in a sub-acute care ward two hundred miles south in Camarillo; I had been in a coma for twenty-six days! I’d been in an accident; I’d suffered a fractured skull, a snapped neck, three broken ribs, a punctured lung, and a shattered right rotator cup and ball. I had a breathing tube coming out my neck, and a feeding tube out of my stomach. Most everything had healed by the time I woke up aside from the tubes hanging out of me. I wouldn’t be made aware of the accident report till a year later.

What surprised me looking back on my imageries, is that I wasn’t the least bit emotionally traumatized by it. I guess I’d absorbed the Buddhism better than I had thought. This was simply the way it was; it is said that “That which is, is the only life we have to live with” so wishing for things to be different wouldn’t have accomplished a thing. Not thinking about it further, I just went about what was required to regain my heath. I figured I had owed that much to those who had put me back together. I have found out since then they had said I had the body of a forty year old, not the fifty-nine year old that I was at the time. I guess those past eleven centuries and bike camping tours must have had some effect.

So I learned to walk with a walker quite unsteadily, a few feet at first, then longer as time went on. There was no movement in my right hand at first, and not much feeling in my right arm, either. The neurologist had thought he’d done everything correct, then as a result of this complication he sent me to have some vital-stimulation on my fingers. It worked only for my fingers at first; it took a few more months for my arm to feel normal. They had me work my legs on an exercise bike, and a table mounted pedaling device for my arms. The breathing tube was removed about July of 08.

While in Camarillo my daughter’s in-laws Ron and Linda came by often; and many friends and fellow sanga (fellow Buddhist practitioners).

My daughter Kristine had visited me a number of times, though she and her husband Pete had moved to Colorado years ago. It had been getting too expensive to remain living in California. The retreat center I had lived at was quite hilly and I couldn’t do my job in the foreseeable future; so we talked it over and she checked out nursing homes close to where she lived. It turned out lucky for me that she chose the one Boulder and not the one in Broomfield were she lived.

A of friend mine and fellow Ojai sangha member, Corinne who is a nurse practitioner, flew with me on Sept. 11th 2008, to Denver. We met my daughter and her husband there, Kristine had arranged transport for me in a specially equipped van to take us to Boulder Manner(a rest home). Kristine came with me. Corinne & Pete followed the van. Corinne stayed with my daughter for a week and visited often.

The therapy carried on much as it had before, but with much more in the way of speech therapy with the intension to assist me in my ability to swallow. The rooms I was assigned to and the roommates were more than acceptable; though I got along much better with the nurses, aids, and therapist then with the other clients.

I was able to keep on the road to recovery, with plenty of therapy; and by using a side- walk three-quarters of a mile long out side and with in the facility parking. Nobody said I could use it, but nobody said I couldn’t either; so I started with the wheel chair. I found out that I would need a therapist along if I was to use a walker outside. After a while I was allowed to use the walker inside by myself. I had asked my daughter to buy me a four wheeled walker, because Medicaid wasn’t aloud to pay for it till I left the rest home. The home had about a third of a mile of linked corridor loop inside that I was able to use at will with either the chair or walker.

I found out that I’d been sued by the person who had hit me for damage to her Bentley to the tune of twenty thousand dollars. After my daughter and I talked to her or her lawyer, I can’t remember which, and told her the shape I’m in and my present income; I’ve had no more contact with them.

There is an organization here called, Center for People with Disabilities, which I was alerted to by one of the social workers at Boulder Manor. CPWD helped me immensely in getting to know how to get about on the bus system, which is absolutely great here. The buses are wheel chair accessible (they lower in front, and will either put out a ramp or lift), and they have a couple of seats that fold up to allow for a couple of wheelchairs.

CPWD also helped getting me section 8 housing, and a wheelchair accessible apartment. Pete my son-in-law used my income tax return and my sister’s money to fly to CA. and pack my stuff and send it out here .So with the help of CPWD, the state’s program for moving costs, and furniture, I was able to move into my own apartment by September 2009. Still working hard, it’s a long hill back.

I got a hospital bed and feeding pump from Medicaid, (I still have to lay on my back with the top portion of the mattress is up thirty degrees for over night feeding of one hundred ml. of levity, a corn based version of ensure). I take another eight oz. can at about noon. I still use the wheelchair most of the time, I’m much faster in it that then with the walker.

I’ve got a nurse that comes by for an hour on Monday mornings to check my vitals, fill the weekly med-boxes, and ask me how I‘ve been. There is also a group of nurse’s aids who take turns with assistance for an hr. at 8am and 8pm, and a house keeper for about 2 hr. on Tuesday at noon to clean and do the laundry courtesy of CPWD. So I’m doing quite well considering the state of my health and the BIG MISTAKE.

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