Impact Feature Issue on Stories of Advocacy, Stories of Change from People with Disabilities, Their Families, and Allies (1988-2013)

In 2007, Impact explored one of the keys to life in the community for people with disabilities: qualified, reliable Direct Support Professionals (DSPs). Impact: Feature Issue on Direct Support Workforce Development talked about the growing problem of demand for DSP services exceeding the pool of individuals available to fill that role. In this article from that issue, John Smith talks about the importance of DSPs to his daily life, and the demands of managing his own DSPs.

After an adult lifetime of independently caring for my personal needs, a spinal cord injury forced me into a crash course on finding and managing people to help me with my most basic and personal activities. The resources available to me were (1) the money in my savings account, which eventually would be supplemented with Medicaid dollars; (2) a service provider agency to assist me with things like completing background checks on prospective DSPs and managing payroll; and (3) a neighborhood and community that I needed to trust would hold the social capital I needed to first survive, and eventually have a life I truly enjoyed. My most immediate need was to find people to help me with essential activities, such as getting out of bed every morning and having something to eat a few times each day. My two greatest fears were losing my sense of control over activities that I was asking for help with, and depending on people who proved not to be dependable.

My DSPs have very difficult jobs. I ask that they come to work, usually early in the morning or late in the evening, and work shifts only 2-3 hours long (sometimes less). I ask them to often get “up close and personal,” to perform tasks such as lifting me (which is not easy), and to help me with nearly every aspect of my personal life. Their jobs are not ones that anyone can jump in and do well, a fact that is sometimes forgotten. Though I sometimes forget it myself, the DSPs who have been with me the longest and who I trust the most have developed a unique set of skills, knowledge, and attitudes. They are the first to admit they are not experts on providing personal care to all people with disabilities nor are they gourmet chefs. But they do have expert knowledge in providing personal care that matches my needs and preferences, and in preparing the kind of meals I enjoy the most. This is exactly why it is so important for me to recruit and hire quality people, and to make the job attractive enough for people to stay around once they get the hang of it.

I need several hours of support each week. I have chosen to have several people working for me part-time, instead of having fewer people, or one person, covering most shifts. While this presents the challenge of managing several people and means that no one person feels a sense of ultimate responsibility for my care, I value the flexibility this provides in managing changing work schedules. I also like it because it assures I have ultimate responsibility and clear authority in deciding how things will be done in my home. As I have grown to trust my DSPs I have become more comfortable with and appreciative of them trading hours without my involvement so that all shifts are covered, and with them providing ideas about how to do things at home. Each of my DSPs has developed a work routine of their own. My role has become to listen to what they need from me to get things done more efficiently. I see my increased trust in each of my DSPs and their judgment as signs of my increased maturity as a supervisor. I have let go of some of my control over the small things, but maintain my influence in setting the tone and deciding what’s important in my home.

Being responsible for managing my DSPs includes recruiting and hiring enough candidates to meet my support needs, and developing some ways to punt at times when I do not have enough of them. Recruiting DSPs has become easy for me because I live on the edge of a large university campus. I have used classified ads in the student newspaper, posted flyers, as well as word of mouth and personal contacts to find people interested in being a DSP for me. As the method of recruitment moves closer to me, my chances of finding someone with strong interest increase (i.e., a personal contact is more likely to follow through than someone answering a newspaper ad). As I have lived in my current apartment longer and have gotten to know my neighbors, it has become easier to find people to work as a DSP for me. I try to pay a higher hourly wage than other jobs in my area. Currently, all of my DSPs earn the same wage and I find ways to give people bonuses when they do exceptional work. In the future, I will probably begin giving raises to people as they stay with me.

When I started, someone with more experience advised me that my DSPs could not be my friends. Though confusing at times, I now consider my DSPs colleagues. When they come to my house, they are coming to work. As their supervisor, I need to assure all our relationships are grounded in an environment of respect, patience, and flexibility. As I ask my DSPs to honor these values, it is important that I model them in my relationships with each of them. For example, I need to show respect to my DSPs and the work they do by being home and done with my activities each night when my DSP comes to help me go to bed. Similarly, I expect my DSP to arrive on time each evening so I’m not forced to bide my time waiting when I could be doing other things. Being flexible means I sometimes go to bed a little earlier or later if my DSP has special plans. I am usually happy to accommodate such requests because I know an evening will be coming when I will need to ask that DSP for a similar favor. Patience, of course means being understanding if someone is occasionally late and even honest when the tardiness didn’t cause any real problems, and trusting that as I give someone a break, that person or maybe someone else will soon be giving me a similar break. We are usually able to maintain an atmosphere of respect, flexibility, and patience. I am amazed at the way some very difficult situations do not turn into catastrophes or interpersonal struggles as my DSPs and I model these behaviors for each other. I shudder to think how quickly everything would unravel if I began to ignore any of them.

My need for personal assistance has thrust me into the role of a supervisor for several people, as well as a recruiter when I need to be. After two years, I have learned a lot and still have more to learn. I have been lucky enough to have a very solid group of DSPs, and worry about the day that each will leave to get a “real job.” Though it is neither good nor bad, the task of managing DSPs will be a lifetime challenge for me. I would not have it any other way.