35th Anniversary Edition
Focusing on Relationships
In 2022, Nathan Perry and his family chaired the Arc Gala in Minneapolis. He continues to direct his own disability services. He worked in competitive employment for several years and today continues to live with his family in Minneapolis, Minnesota.
I’m really fortunate with the staff that I have. Most of the people working with me today I’ve known since 1997. I got the waiver and everything in about the year 2000 and we hired on family friends that had the expertise and that we could trust weren’t going to be in danger of burnout. Upon hiring them, we made sure we paid them a decent wage. That helps with retention, and also helps them feel respected and wanted. I’ve travelled and spoken to people around the country, and when they ask how it’s possible that I’ve had staff for 20 years and keep them from walking away, I say that pay is a big factor. So is letting them know they are valued and letting them know their work is appreciated. I’ll say thank you to Tammy when we’re going grocery shopping, and she says, “you don’t need to thank me, it’s my job.” I say, “thank you” anyway. My staff has helped me in some dark times in my life and they didn’t run away. They stood firm through the thick and thin of life’s struggles and accomplishments.
I’m not embarrassed to say this. I’ve got it under control, but I am in recovery from alcoholism and had to go to treatment four separate times. It was a really dark and scary part of my life and nobody ran away. They provided me supports and everything. One of the things that is really important is that everybody’s communicating with everybody. Staff is communicating with my family and with me, and everybody shares knowledge and has support team meetings, where we get together and discuss issues and how we want to move forward so everybody’s on the same page. Without that team aspect, it won’t work and people would eventually get burned out or not feel respected. We listen to everything. I’ve been sober now for more than seven years.
“I’m growing wiser with age and starting to pick my battles and decide what’s really important.”
We had our support waiver services monthly meeting with my case manager yesterday and we started talking about our plan as we move into the retirement years. I am turning 50 this year and so we need to start thinking about that. Everything’s on the table.
I’m currently reassessing my life and trying to stay away from negativity. I’m growing wiser with age and starting to pick my battles and decide what’s really important. I need to polish up some relationships with family and former support staff. Relationships are more important to me now than they have been in the past. I’m trying to mind my p’s and q’s and stay healthy. I also spend time taking care of my fish. I talk to them, and they respond. I’ve taught Midnight his name and he comes when you call better than the dogs do. Fish can sense vibrations as you’re talking and they are smart enough to respond to their names.
Some things have changed that have me a little concerned. When COVID-19 hit, it was detrimental to a lot of agencies that provide direct support professional (DSP) services for people with disabilities. Several places I know have closed, and others have merged to stay alive. The quality of care has gone way down and that’s because of a lack of people who are qualified and because of the pay. The pay is still a huge issue. I have a friend who has had to sleep and go to the bathroom in her wheelchair because there is no one to work.
My family members have been absolutely lifesavers. I would not have survived without them, period. We have our issues but I just think in today’s world, it would be impossible to have the life I have without them and my support staff.
My Life and Consumer-Directed Supports
Excerpted from Impact, 2004
By Nathan Perry
It’s a clear, cool evening and I am riding my bike with John (he’s in charge of my support team and also helps me with things like being more healthy and understanding my spirituality). It is my first ride in quite a while. At one point he says to me “Wow! Nathan, I can hardly keep up with you.” Because the bike trail is close to where I live, I know the area better than he does…so I am leading the way. Even though I haven’t gone riding lately, I think I am doing pretty well and I know that John does a lot of biking. By the time we were done, both of us were tired and had sore muscles; we had gone about 13 miles in an hour and 15 minutes. Later, I bragged about it to my brother Brad. I’m glad we went biking that night; it was great.
This is just one story about what makes consumer-directed community supports (CDCS) such a great support for me in my life. For me it means mostly being more independent and doing the things I want to do and not always the things others think or say I should be doing. But, that’s not the way things always have been. I just started CDCS about two and one-half years ago. So, you can better understand how important CDCS is to me now, I will tell you a little bit about what my life was like during the 27 and one-half years before CDCS.
I was diagnosed with a disability called autism at age 16. Before that I had been given lots of labels – retarded, developmentally disabled, bi-polar, schizophrenic, emotionally behaviorally disturbed, to name a few. During my first 18 years, I lived with my parents and received no specific services for my disability from an outside agency except for at school, I was always in special education. A lot of people did not know what to do or how to provide services for me. It was extremely stressful for me, especially in high school. I didn’t get along with kids. Most of them made fun of me because of my disability. And I watched everybody else grow up and have friends and have relationships while I felt abandoned. I’ve never really had friends. One positive thing during that time was that some neighbors would help me with emotional support for some of the difficulties I was having.
When I was about 17, I was kicked out of school because of my “behavior.” I had to move out of my parents’ home and into my brother’s, and we fought the school to get me the education I had a right to. At some point I did start receiving some services, like help with finding and keeping a job, finding friends, joining a scuba diving club, getting an apartment, and learning how to live with a roommate. While the staff persons were helpful for the most part, many of them would resign and not stay with me for very long. That caused me tremendous stress. Also, most of the staff was not very educated and they didn’t really know how to support people with autism who have challenging behaviors.
I was very excited to hear about the CDCS option and the possibilities of getting the support I wanted so my life would be happier and I could make my own decisions. One of the first actions that I took with my family and support people after being approved for the CDCS option in Minneapolis was to develop a person-centered plan. All my staff have been very helpful to me. They really know my moods and how to work with me; they listen carefully, help me make better decisions, and challenge me when I need it. All of them have been available to me when I have one of my crises. They help me to focus and to emphasize my strengths. The direct support professionals who work with me have made my life more stable, and over the past two-plus years only one staff person resigned and that was due to some personal situations, not because they didn’t want to work with me anymore. Also, no one has broken my “not showing up and not calling is not acceptable” rule for working with me. All of the staff told me individually or in support team meetings that the CDCS means less paperwork, no office politics and almost no agency bureaucracy for them…and for me and my family. They also have said that they are happier and more satisfied as professionals working with me in the CDCS than with many of their other jobs as direct support staff. I get to do what is important to me and not what others think I should be doing. I am connected to more people, events, clubs, and churches, etc. in the community than ever before. I am eating healthy foods and doing more exercise on at least a semi-regular basis. I go where I want, when I want. I have spent more fun time with my nephew and enjoy being at the family cabin in Wisconsin.
I still do have lots of situations that can sometimes make me very frustrated, pained, sad or angry. One of the most difficult things recently is that I lost my job. It’s hard on me because I need the money to pay my bills and buy things that are important to me. [Other] challenges include finding friends who are not my support staff. With the CDCS option, I have learned to deal with these difficulties in my life. At least I keep trying.