Impact Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities

My Life and Consumer-Directed Community Supports


Nathan Perry is a Self-Advocate living in Minneapolis, Minnesota.

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 bike ride in quite awhile. 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. Once or twice we slowed down because we wanted to enjoy the animals behind the fence surrounding the wildlife refuge next to our bike trail. We were lucky; we got to see several deer, lots of geese, and a red fox. By the time we were done biking, 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 small 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 born on October 27, 1973 in Bloomington, Indiana. It wasn’t until I was 16 years old that I was diagnosed with a disability called autism. Before that I had been given lots of labels – retarded, developmentally disabled, bi-polar, schizophrenic, emotionally behaviorally disturbed, to name a few. During the first 18 years of my life, 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 in school, 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.

With all of my bad experiences with services and direct care staff over the past 10 years, 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. It took us several meetings to gather all the information that we needed to complete a plan that we all liked and agreed on. Here are the parts that make up that plan:

  • A mission statement for me and my support team.
  • A list of my hopes and dreams for the future.
  • A list of my strengths and limitations (knowing this helps my team provide good supports).
  • A description of the goals, action steps, list of people to help me reach the goals, a timeline to help us all stay on target, and resources we can use.
  • A set of qualifications for staff to be part of my support team.
  • A description of team member responsibilities for carrying out my personal support plan.

After writing my support plan, we spent some time talking about and writing a job description for the staff who would work with me. We also wrote my Employee Policies and Procedures Manual. Using this manual made it easier to find, interview, and hire well-qualified staff who could support me in reaching my goals, hopes, and dreams. My employee manual has the following parts:

  • My team mission.
  • My vision and dreams.
  • My expectations of the roles direct support professionals have who work for me.
  • Specific policies and procedures related to: minimum requirements and considerations for being employed by me; the areas of needed and desired training; expectations about confidentiality, respect, and privacy for me; requirements for documentation and human resource areas (e.g., mileage and expense reimbursement, salary, paid time off, incentive bonus, etc.); expectations about participation in support team meetings; and the use of positive discipline.
  • Staff training checklist.
  • Responsibilities for me, the direct support professionals (DSPs), and other professionals in carrying out my personal support plan.
  • Desired characteristics and qualifications for my support team members.

What I did next was to look at who I knew that might be good DSPs to be a part of my support team. We discussed a number of possibilities (people who we knew were already working full- or part-time as DSPs in different work settings), contacted them to ask about their interest in supporting me, interviewed those who were interested, made decisions about who we wanted, let them know about our decision, and later conducted an orientation session with each of them. Now, we have been working together for about two years.

When I think about the CDCS and what is working the best for me, I have a number of points I can make. First, I want to say some things about my staff.  All my staff have been very helpful to me. They really know my moods and how to work with me; they listen carefully to what I say, 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. Then, they help me to focus my thoughts and actions and to emphasize my strengths. A couple of other things I know about the direct support professionals who work with me are that they 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 staff 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. What has worked best for me with the CDCS option is that I get to do what is important to me and not what others think I should be doing. Some other things that work for me are:

  • I am connected to more people, events, clubs, and churches, etc. in the community than ever before.
  • I am eating somewhat more healthy foods and doing more exercise on at least a semi-regular basis.
  • My independence is so much better; I go where I want, when I want.
  • I have spent more fun time with Amos (my nephew) and enjoy being at the family cabin in Wisconsin.

With all these good things in my life, you may think that every thing is wonderful and that I don’t have many problems or challenges that bother me. Well, 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. Also, I miss some of my co-workers and I am sad that this is a job I have had the longest in my life, about three years. We are working to hire a job coach and developer to help me find another good job, or even a career.  Here is a list of some other challenges and struggles that continue to be part of my life:

  • Living in a small apartment attached to my brother’s home has had its difficulties, like I have less privacy than I would have with my own apartment and sometimes I feel like my activities and “comings and goings” are monitored too closely. Increasing my independence and privacy by getting my own apartment is a key goal of mine.
  • Having friends who are not my support staff is still not happening. I have a hard time starting a friendship and then keeping it going.
  • Healthy living (less sleeping during the day, regular exercise, nutritional meals, and not talking so much to certain people who make me stressed out) is really hard to do all or most of the time.
  • Working on my challenging behaviors (unhealthy boundaries with others, making a small irritation into a big frustration, being disrespectful by saying crude things or making sarcastic remarks) needs a better effort on my part.
  • I don’t have a job or a career.
  • I still have trouble with family dynamics.

WOW ! ! That’s a lot of challenges. But with the CDCS option, I have learned to deal with these difficulties in my life. At least I keep trying.

One more thing I want to talk about is what information I could share with other persons with disabilities and their families who might want to consider using the consumer-directed community supports option to manage their lives. Some of the things I would suggest include:

  • Talk to your case manager (service coordinator) if you really want to use the CDCS or similar option, and keep talking to them until you get what you want.
  • If you want more control over your life, think about using CDCS or a similar option; you can become more independent.
  • With CDCS, I think you will have a higher probability of finding direct support professionals who are more educated and experienced. They seem to be able to help you more.
  • I believe the CDCS or similar option can get more money for education and training to improve lives – both yours and your staff.
  • I would suggest that you use an agency (called a Fiscal Intermediary or the Employer of Record) that can do the payroll, keep track of vacations, get the right kind of insurance, and so forth. Doing that yourself or through your family can be a real headache.
  • Use your money you get for services wisely – pay staff as much as you possibly can, and if they need health benefits make sure they get them. Also, give them an incentive to do what you want them to. I pay staff a 20% bonus on their gross earnings if I achieve what I want each year.

Although sharing my stories and ideas with you has had some tough moments, especially about my past, I have enjoyed telling you about my life with CDCS. If you want to learn more about my life with the consumer-directed community supports option, or talk about my support plan or my employee policy and procedure manual, you can contact me.