Following are three stories about dilemmas that consumers have encountered. They are presented here to generate further thought and discussion about the 12 Fundamentals for Practice and about the strategies consumers can use as they wrestle with such challenges in their work. There are no simple right or wrong solutions to these complicated situations. They are complex, yet entirely realistic, examples of the kinds of issues consumers face.
There are many ways to use these scenarios — as part of an in-service or staff education program, at a workshop or training conference about consumers in leadership roles, or at a regular meeting of a support and information group for consumers. The questions at the end of each example can be used to get the conversation rolling.
JUAN'S DILEMMA
Juan works at Parents Together, an organization that advocates for children with special needs and their families. Juan often accompanies parents to meetings with school personnel and supports them in advocating for services for their children. Mr. and Mrs. Plotkin have come to Parents Together to ask for assistance. Their son Lonnie, who has very complex needs, is in a regular classroom with a full time aide. The Plotkins have insisted on this placement but believe that the teachers are not doing everything possible to make the inclusive setting work for Lonnie. The school administration believes that Lonnie would be better served in a more restrictive classroom.
Juan is assigned to work with Mr. and Mrs. Plotkin. He arranges to observe Lonnie in the classroom before meeting with the school personnel. After spending time in the classroom, Juan has serious concerns about the appropriateness of the placement. Lonnie is very isolated from the other children and Juan questions whether his needs can be adequately met in the regular classroom.
Juan reports his concerns about Lonnie to his supervisor. He also tells her that he personally does not favor inclusion in every circumstance. At the supervisor's suggestion, Juan meets with the Plotkins to share his perspective. Following the meeting, the family remains committed to having Lonnie placed in a regular classroom.
The policy of Parents Together is to advocate for the parents' wishes in whatever they seek from the school system. Juan is unsure about his ability to do so convincingly in this case.
Discussion Questions
Which Fundamentals for Practice are involved in this situation?
What conflicts does Juan face?
What steps can Juan take to determine his best course of action?
LYDIA'S DILEMMA
Lydia is a member of the Mayor's Task Force on AIDS. She works, along with other consumers and health and human service professionals, to determine the service and funding priorities for AIDS-related organizations in her community. Lydia has years of experience with HIV-related issues, and is a highly regarded member of the Task Force.
Lydia's first experience as a consumer was in the mid-1990s when she was part of an innovative HIV program in her community. The program — Project Our Town — hired women from the community as outreach workers. Their job was to encourage other women who were HIV positive, or at high risk for HIV, to come to the local medical center for testing, treatment, and support. All the women outreach workers were themselves HIV positive.
Over time, the group of five outreach workers became very close. Not only were there common elements in their personal histories, they also shared many on-the-job experiences. In addition to the training they received when the program began, they participated in a weekly support group to discuss the challenges of their work. They learned the details of each other's lives and they offered help to one another both on and off the job.
Marlene was one of the most dynamic outreach workers. She connected quickly and comfortably with the women she met in the community. After a couple of months, however, Marlene's behavior changed and the other outreach workers became concerned about her. She began to arrive late or to miss work completely. Frequently her log of outreach activities, which the women were required to complete weekly, was blank or not current. Marlene's co-workers always filled in for her so their supervisor was unaware of Marlene's increasingly unreliable job performance. Once when Marlene and Lydia were scheduled to do a presentation on Project Our Town at an important community meeting, Marlene did not show up. Lydia took over the presentation but decided to talk with Marlene about her erratic behavior afterward.
The following day, away from the other outreach workers, Lydia spoke to Marlene. Marlene was both apologetic and emotional. She told Lydia she was having a lot of personal problems, but she did not want to talk about them. She vowed to be more responsible in the future. With Lydia's help she updated her weekly logs and became a more active member of the team. Over the next months Marlene's work performance improved, although she was frequently late and missed many more days at work than the other outreach workers. She rarely attended their weekly support group meetings. When Project Our Town ended, Lydia lost touch with Marlene.
Now, three years later, at the most recent meeting of the Mayor's Task Force, James Black, the director of a local AIDS agency, tells Lydia that a former colleague of hers, Marlene Jones, has applied for the newly-created consumer position in his organization. James had been skeptical about including consumers on the Task Force when Lydia first joined the committee. Over time he has come to value the contributions that she and the other consumers have made. Based on that experience he decided to develop a consumer position in his own organization. He tells Lydia how pleased he is that someone who worked on Project Our Town has applied for the job.
When Lydia arrives home that evening there is a phone message from Marlene on her answering machine. Marlene says she has applied for the consumer position and asks Lydia to give her a good recommendation. She also says how much she needs the income the job will provide.
Discussion Questions
What are the dilemmas in this scenario?
What is Lydia's responsibility to Marlene? To other consumers? To the director of the organization?
What steps can Lydia take to determine her best course of action?
ADA'S DILEMMA
Ada is the Parent and Family Advocate at Children First, a child health advocacy organization. Children First was one of the first organizations in the community to hire a consumer. Ada has worked there for five years and is a highly valued member of the 15-person staff. She is responsible for coordinating a network of parents who have children with special health care needs. She solicits their ideas and feedback on the organization's initiatives. Ada also writes a quarterly newsletter.
In addition to her job at Children First, Ada is the co-founder of Families United. Families United is the first parent-run organization in the community, and Ada and other parents have worked for several years to get it up and running. The organization has recently received its 501C(3) (official not-for-profit, tax exempt status), so now they can apply for public and private grant money. Raising money is the number one priority of the board of Families United.
During a weekly staff meeting, the director of Children First announces that a new RFP (request for proposals) has just been announced by The Brown Foundation, a national charitable foundation. The foundation, which is very interested in health care issues, has focused the RFP around ideas for improving the quality and delivery of managed care to individuals with special health needs. The director leads the staff in a brainstorming discussion about ways they might respond to the RFP. The staff generate a number of ideas including one to survey parents of children with special needs about their needs and priorities in a managed care setting. The staff sketches out a plan for getting the information from parents including the kinds of questions they would ask and how the survey would actually be conducted. The director is very enthusiastic about the idea. He has worked with people from the foundation before and knows that the foundation is particularly interested in projects that have a direct consumer component. He believes the idea has a good chance of being funded, and asks two of the senior staff to begin writing a budget to support it.
That evening Ada attends the monthly board meeting of Families United. A subcommittee of the board has been charged with identifying possible grants and other revenue sources for which the organization can compete. The chair of the subcommittee is very excited to report that the Brown Foundation has issued an RFP that is very consistent with the Families United's priorities. The president invites the board members to brainstorm a response to the RFP.
Discussion Questions
What dilemma does Ada face?
What Fundamentals for Practice are involved in this scenario?
What steps can Ada take to determine her best course of action?
