It’s time to pass the Community Choice Act (S 683/HR1670)!

Brian, Utah

Introduction: Brian
If Brian's family had received community support services such as respite care and home health assistance, it is possible that Brian never would have gone to a nursing home. Furthermore, since Brian was already deeply rooted in his family and community, it is more than likely that with only a little instruction on the need for structure Brian would have gone on to be a very productive and influential person within that microcosm of society. As it was, Brian spent years of his life waiting for the next meal, the possibility of a recreational activity, or bedtime.

Brian watches as others were able to access specific waivers to get the funding they needed to move out of the nursing homes. Brian followed suit but was continually frustrated in his efforts to move out into the community, because he didn't meet the specific requirements of the existing waivers.

Finally out of the nursing home and receiving services from Flexcare ( a pilot program that accesses funding for people who don't fit into any of the waiver programs) Brian has moved into an assisted living program. He reports that he is happier and more energetic. He is also looking for volunteer opportunities that will let him contribute to the community.

Brian's Story
I want to tell my story because I want others to know how frustrating it is to want to be a part of the community when you live in a segregated setting such as a nursing home.

When I was nine years old I was diagnosed with an inoperative brain tumor and while it didn't kill me, both the tumor and the exploratory surgery I underwent at that time caused some brain damage. My father died when I was ten and it was a difficult time for my family. One of my early experiences living in a nursing home happened when my brother and his wife could not longer take care of me. My legs were swollen and so big that I couldn't move around.

That first night, I felt totally devastated because I couldn't live with my family anymore. I felt useless like there wasn't anything I could do for them and I felt like it was my fault. Instead of being with my family all the time and being part of its on going story, when I was in the nursing home I saw most of my family only on occasion. This made me very lonely.

This first experience happened over twenty years and it was really the only option for me and my family at the time. Now we could have thought about community services such as personal assistance and respite care - provided we could access the funding for these services. The availability of services could have allowed me to participate in family and community life and get the care I needed at the same time. (And these services would have cost much less than living in a nursing home.)

I've been out in the community living on my own several times but I always had to go back because without the services I needed to help me maintain a structure, I tended to gain a lock of weight and my skin would break down. That meant that I couldn't move around very much, which would cause my skin to break down even more. Every time I went back to the nursing home, I tasted failure. It was like I had my chance but now I was back to square one. I blamed myself. I didn't want to be in the nursing home but I couldn't get the specific services I needed to be successful on my own. Now I realize that services (similar to what I now receive in the assisted living program that I now participate in) including: cooking instruction, personal assistance, accessible housing and transportation, would have opened so many doors. I could have found (and gone to) work - even volunteer work would have kept me interested and connected to the community. I could have also been more involved with my church. I could have given more to the community. So often I felt like all I could do was take but with the right services, I could have given more.

Now I want to help make sure services like: scheduling and planning assistance, transportation, physical therapy, and diet and medication reminders are not only available to me but to the younger people who want to both live in and give to the community.

The nursing home alleviated the problems that my family and friends had taking care of me. But in the nursing home, I very often didn't have control over what I did or when I did it. I had to schedule a shower and was lucky if I could have one three times a week. Now, in the assisted living program, I take my own showers everyday if I want to. In the nursing home, I had a limited choice in what I ate. In assisted living, I have my own refrigerator and microwave in my room, so if I don't like what they are serving, then I can have my own food. I guess the most important thing that is happening now that I'm not in a nursing home is the availability of natural opportunities I have developed and practice more skills on my own. In the nursing home, there is an encouraged and forced dependence.

A typical day in the nursing home began when I woke up at 6:00 am. I got ready for the day and went downstairs to the dining room. There were usually two, sometimes three others down there and we would play cards until breakfast time. We waiting, breakfast would come, and we would have our breakfast.

After breakfast, I went to my room. That was about 9:00 am. A lot of the time I sat and watched TV. I waited to see if there would be an activity to go to. Sometimes the staff would run bingo or something. If that was the case, I would go the activity, and then come back and sit around.

At 10:30 am, there would be a coffee break, but I don't drink coffee, so I would have hot chocolate. Sometimes immediately following the coffee break, there would be another activity, which I usually went to. Then it was time for lunch. I would go down to lunch early to play cards again. We ate lunch and I went upstairs and I just sat around because there wouldn't be anything to do. Sometimes I took a nap. Around mid-afternoon, they might have some kind of activity.

Once in a while, they would have some kind of entertainment after dinner but not very often. After dinner, we just went to out rooms and waited until it was time to go to bed.

People normally have at least one roommate in a nursing home. Sharing a room with someone was intrusive because of a lot of things. I had to take into consideration things like having the TV on, or the radio, or the light on. Even how late I stayed up or when I went to bed depended on a shared understanding with my roommate. I had many arguments with my roommate because I might not agree with him on something. It's worse if you have separate TV's because one is watching one and one watching another. I had to keep my TV loud enough to hear it and quiet enough for my roommate. To top it off, my roommate was in the bathroom constantly! I had to watch and take advantage of the times he would vacate the throne in order to relieve myself!

I did meet a dear friend in the nursing home and I missed seeing her everyday. I think the world of her. The main reason I think so highly of her is that she is one who will stand her own ground for herself. She will say what she feels and ever since I have met her I have really, really looked up to her for that. I didn't used to be that way. My mother even likes her. My friend always tells me to make sure that I tell my mother I love her. This friend has and will always have a very, very special spot in my heart. My relationship with her is one of the very few positive things about my experience the nursing home where I lived.

Now that I am in an assisted living place I feel happier now because the environment feels happier to me. Family members who come to visit say they notice a difference. They all say, “This is so much better than the nursing home.” There is more energy in the air and more of an assumption that you will find things to do, even though there are not as many planned activities. The staff assumes that you have interests and hobbies of your won that you will pursue.

My room feels more like an apartment. It is my own room. I don't share it with anyone, unless I invite someone to be there. I have my own shower, refrigerator, microwave and I could have a pet if I wanted to.

I think almost everyone would want to live as independently as possible but the funding is not set up make it easy to get services in the community. In order to get the money that was used to pay the nursing home to pay for the assisted living place I am in now, I needed to fit into a category so I could qualify for a waiver that would channel my funding. The trouble was that I didn't fit. The Personal Assistance Waiver requires that you have the loss of function in at least two legs needed to perform daily living activities. With me, sometimes this is true but sometimes it's not. (Sometimes I walk quite well but a lot of the time I really can't.) The Traumatic Brain Injury Waiver requires that the brain injury be traumatic and caused by some sort of accident. My brain injury wasn't caused by a traumatic event so I don't qualify for the TBI Waiver. I do get funding from Flexcare, a pilot program that helps people who are hard to fit into other waiver programs transfer funds from nursing homes to community based services. But there are so many people who could live successfully in the community and do it a lot cheaper than they would in a nursing home and not enough programs like Flexcare to help transfer the funds. Right now, people are entitled to nursing home care and not community services. This is what needs to change. It needs to change because not only is it cheaper to provide services in the community, but it lets people be part of the community, but it lets people be part of the community. I not only receive services in the community, but it lets people be part of the community. I not only receive services in the community but I shop, attend church and I am thinking about volunteering for a youth organizatrion. And this makes me a contributor as well as a consumer. And isn't That what the community needs.