Everything Is Normal Until Proven Otherwise
By Karl W. Dennis and Ira S. Lourie
In Everything Is Normal Until Proven Otherwise, a new book from CWLA Press, author Karl Dennis shares stories from his experiences with the youth and families as director of the Chicago-based agency Kaleidoscope. Coauthor Ira Lourie, a child psychiatrist, offers commentary on these stories and how each illustrates central tenets of the Wraparound approach.
Wraparound, or individualized, services are rooted in the principles of individualized, community-based, strength-focused services. In this excerpt adapted from the book, the authors share the story of "Cindy" (not her real name), with whom Kaleidoscope worked to reunite with her child. Following the excerpt, Lourie explains how Cindy's story is a successful example of Wraparound services working in favor of a mother and child's needs.
A Story About the Essence of Wraparound
In 1987, the state of Illinois approached Kaleidoscope, expressing a need for services for infants who were born HIV-positive or diagnosed with AIDS. We accepted the challenge to create a more normalized environment, a home life, and a family for these abandoned children.
The state informed Kaleidoscope that most of the parents of children with pediatric AIDS were drug abusers and prostitutes and were not interested in their children. Regardless, we believed strongly in the ties of families, and we knew we needed to look for these children's parents. In addition, we felt the family was more than just a mother and a father--it also consisted of aunts, uncles, grandparents, and even close friends. Some cultures believe the family includes the whole tribe or neighborhood. We saw these children's natural parents and families as valuable resources, and we went out to look for them.
Finding the families of abandoned children is not an easy task. Those who have worked in in-home services know every community has what we call "natural informants," or nosy people. These are the people who know everything going on in the neighborhood. At Kaleidoscope, we tended to identify them when we tried to find someone in the community.
This particular time, we were looking for a woman named Cindy. The natural informant in this case was a man who ran a pawnshop. We left little notes for her there. These notes didn't clearly explain what we wanted, because of our concern for Cindy's confidentiality and our expectation that the nosy informant would most likely open Cindy's mail. We left notes for three or four weeks. Eventually, Cindy called and asked what we wanted.
"We want to know if you would like to see your baby." Cindy replied she would, and we sent someone to pick her up.
Now, our office was a pretty relaxed place; clients and staff were always bringing in their children and pets. My office was at the end of a long hall, and on this particular day I smelled this horrendous odor. I went to see what it was--I thought someone had brought in a dog that had not had a bath in several years. As I got to the hall, the first thing I saw was a woman coming toward me. She was ragged. She was dirty. She had no teeth. I could tell she had no teeth because she had this great big smile on her face. As Cindy walked closer to me, I discovered it was she that I had smelled.
I turned to her and said, "Hello." I have to confess, I was standing as far away from her as I possibly could and was holding my breath. She turned to me and mumbled something. To hear what she said, it was necessary for me to move closer to her, which was a major challenge to my philosophy of unconditional care.
When Cindy spoke again, I realized she was offering to perform sexual favors for me in exchange for money. Now, I believe that one of the quickest ways to break the ice with someone is through humor. So with a smile I said, "Cindy, this is something we can't even talk about until you've had a bath and gotten some teeth in your mouth."
I didn't know how she would react, but she began to laugh, and I laughed with her. This was the beginning of a friendship (not an intimate relationship, I assure you), and a learning experience for both of us.
As I talked with Cindy, I decided that, as usual, a direct approach was best. I told her the information we had received suggested she was a prostitute and a cocaine addict. I asked her how this had come about. She said she came from a small town down south and had lived on a farm for many years. She hated farming and had spent a lot of time trying to get away from it. She decided to head north and, after saving some money, got on a bus and for Chicago.
Things began to go wrong soon after she got off the bus. In her hometown, people were very friendly; they shook hands and talked to each other on the street. When she tried this in Chicago, people shied away from her. They thought she was weird and looked at her strangely. Cindy's stomach began to hurt, and she got extremely anxious, so much so that it became difficult for her to talk. She lost her confidence, and as a result it took her a whole day just to find a room to live in.
The next morning, she attempted to find work. But every time she approached someone, she again became anxious and nervous and couldn't talk. When she eventually became hungry and frustrated, she didn't know where to seek help. I asked if she had tried public aid, and she replied emphatically, "No!" Her family values were to not accept charity, so she continued to seek employment. But her job search was unsuccessful, and she got to the point when she had to swallow her pride and seek aid after all.
In Cindy's hometown, only three people worked in the public aid office. They were friendly folks who would say, "Come on in" and "What can I do for you?" In Chicago, when she got to the public aid office early in the morning, she found a line stretching halfway around the block. It took hours for her to get in. By the time she was called, she was so nervous and anxious that, once again, she couldn't talk, and she ran out of the office.
Then, Cindy ran out of money. Hungry and on the verge of being homeless, she sold the last thing she had of value--her body. Because she hated doing this so much, the only way she could continue was to take drugs.
At Kaleidoscope, we began to work with Cindy. We got her a bath, found her an apartment, and helped her get on public aid. We tried to get Cindy into a counseling program around AIDS, but she was in denial and told us she didn't have AIDS.
After she was all set up and cleaned up, she told us she wanted to go into a drug abuse program. This irritated us, because our plan had called for us to develop a relationship with her first, before we approached her drug issues. Nothing seems to irritate service providers as much as when consumers get ahead of them. We're not in the habit of people telling us what to do; we're used to telling them. At Kaleidoscope, however, we believed in supporting people's desires to get better, and we arranged for her to enter a drug abuse program. Those of us who were optimistic bet she would complete it; those who weren't bet she wouldn't.
We told Cindy that most people don't kick drugs with their first attempt and that the problem with a lot of substance abuse programs is they would terminate you from the program if you reoffended while receiving services. Now, we don't believe in doing business this way, because this is just the point in time when people need services the most. We told Cindy we hoped she would complete the service. But, in the event she wasn't successful, we assured her we would still be here for her because our commitment to her was unconditional.
Cindy did complete the program successfully. When she returned to Kaleidoscope, she told us the whole time she was away working on her drug issues she thought about how Kaleidoscope had been so helpful to her, and she wondered if there was anything she could do for us. As she struggled to find a way to repay us, she remembered the only thing we had asked her to do that she had refused was to seek counseling for AIDS issues. And even though she "knew" she didn't have AIDS, she said she would go because we asked her to. She taught us that if we did the things people see as a priority, then they may be more willing to do some of the difficult things which we request of them.
A short time later, Cindy came to us and asked us how she was doing. We told her how proud we were of how far she had come. Her response shocked us: "In that case, I want my baby back."
Now, giving Cindy her baby back was not easy. Our first response was to remember that Cindy had been a prostitute and drug abuser, and perhaps she didn't deserve to have her baby back. We seemed to immediately forget about our philosophy, that if you can plug in enough services to support a family, even parents whom most people would consider inadequate could care for their children better than the best substitute system can. Our faith in our beliefs and in Cindy prevailed, however, and we agreed to petition the state for the return of her child.
Not long afterward, Cindy once again challenged our beliefs when she told us she had come to understand she had no resources or family in Chicago other than Kaleidoscope, and that, to progress further, she would need the help of her family. As a result, she wanted to take her child and move back to her home in the South, where she understood the people and their customs.
As you may imagine, this was also a difficult adjustment for some of the staff. Not only was Cindy requesting her child back, she was now expressing her intention to remove the baby from our sphere of influence, beyond our ability to support her. This made it really rough for some of the staff to help Cindy make plans for moving out-of-state, but we knew it was the right thing for both her and us.
Beyond our fears of loss of control over her, making plans for Cindy's move was difficult for a number of reasons. First, she was white, and the baby was biracial. Second, she wanted to live back on the farm with her sister and brother-in-law, but they had personal safety concerns about her AIDS, a response that, unfortunately, is not at all unusual.
As we worked to overcome these issues, we contacted some agencies from Cindy's home state and asked them to help us. We brought the sister and brother-in-law to Chicago and worked with them in great depth. Although they continued to have some reservations, we reached a compromise in which her sister and brother-in-law would continue to live in the house, and Kaleidoscope would attempt to find the funds to help Cindy purchase a trailer so she and her baby could also live on the farm. The state agreed to offer the necessary services to all members of the family. Under these arrangements, we felt comfortable that, eventually, this family would be able to function as a unit.
One of the planned supports was for Cindy to receive Supplemental Security Income (SSI). The process for this most often requires a great deal of time and a number of appeals. By the time her benefits were approved, she had a lump sum of $6,000 in back payments coming to her. Once again, Cindy created a philosophical dilemma for the staff. Some believed she would take the money and buy cocaine; others thought she would take the money and do something productive. According to our beliefs, we worked through our feelings about Cindy receiving such a large amount of money.
We told her we hoped she would do something productive with this money, adding, "In the event you spend all of the money on cocaine, and if you are still alive, we will still be here for you. Our commitment to you is unconditional."
When she cashed the check, she kept a small amount for herself and bought her trailer with the rest. Remember, Cindy's values were to not accept charity. The plan was working. We were supporting Cindy's strengths, and she rewarded our faith by not stumbling on her weaknesses.
Two weeks before Cindy was to move, she became sick from AIDS, went into the hospital, and died. I lost a friend, but more than that I also lost a teacher. The most important thing Cindy taught me was that regardless of what you read, hear, or think about people, you shouldn't give up on them. There are a lot of Cindys in this world, and if we can learn to listen to them with open hearts and open minds, then the children and families will get better.
Lessons from Cindy
Cindy's story describes the essence of Wraparound and the individualized service approaches as developed by Karl Dennis and Kaleidoscope. To Karl, Cindy was not a patient, or a reclamation project, or the object of a missionary endeavor. To Karl, Cindy was a friend.
In addition, Karl saw Cindy as his teacher. This occurred on two levels: Karl let Cindy teach him about herself, and he learned from her about how to best help all people.
Cindy taught Karl that the package someone comes in doesn't always reflect what is inside. Instead of a smelly, impudent drug-addicted prostitute, she was really a simple, frustrated, lost country girl, in over her head in the big city. She taught Karl about her sense of humor, strong values, and strength and determination that could only be used after she had the support necessary to survive in her environment.
What did Cindy teach Karl about delivering services to people in need? She taught him the basic elements of Wraparound services: first, that taking a strengths-based approach toward her was a better strategy than focusing on her weaknesses. Karl and his staff held a debate each time they faced decisions in which they either had to rely on Cindy to do the right thing or they had to protect her, or themselves, from her potential to mess things up.
When Cindy wanted to go into a drug program "too soon," they let her prove she could do it, rather than focusing on the possibility she would fail. They planned with her to get her baby back when that was what she desired, and they allowed her to spend her $6,000 as she chose. They learned to accept when Cindy made requests, she did so out of her strengths and, if they supported those strengths, things would work out positively.
She taught Karl about the principle of unconditional care, in which he learned the only way to provide services is to never give up. Cindy always met her goals and progressed in her abilities to care for herself and her child, but had she failed at any point, Kaleidoscope would have been there to help her move ahead.
Cindy also taught the need to be culturally competent. She came from a background that was alien not only to Chicago but also to Kaleidoscope staff. To help Cindy give up her troubled life, Karl had to understand what it was like to be a poor white girl from the rural South, and for someone from this background to go to the big city and have the experiences she had.
Cindy told us she needed a community-based intervention. She had no friends or relatives in Chicago. Kaleidoscope was her only visible support. Karl and the staff worried they couldn't support her if she moved back to the south, but Cindy let them know true independence for her meant living in a place where family, friends, and other people--whose ways she understood--were available to her.
For her to be in her community, Cindy taught us that care must be family-focused--that we must reserve a major role for the family to determine their own needs, and that we must focus on the whole family rather than on just one individual. She knew, and we needed to hear, her family would ultimately be the best and most lasting support she could have, and that she was the most important resource for her own child.
In working with Cindy, Karl learned one agency could not be the only help to her--an interagency approach was necessary. At a minimum, Cindy needed substance abuse support for her addictions, medical support for her and her child's AIDS, and public assistance and SSI for her financial needs; and she and her family needed counseling to help the transition home. Each of these forms of help came from different community agencies. Someone--in this case Kaleidoscope--had to make sure all the help worked together and was accessible for Cindy's benefit.
Of course, it was not Kaleidoscope as an agency that brought it all together. Rather, the agency acted to convene a group of people who could work together to help Cindy--a child and family team approach. Although Cindy taught Kaleidoscope over and over again that she knew what was best for herself and her baby, she needed the support of Kaleidoscope staff and others in her life and community to make it happen.
The child and family team is the practical mechanism for supporting the strengths and meeting the needs of an individual or family in Wraparound. In Cindy's case, the team was small. Initially, it only included Kaleidoscope staff. Later, it came to include her baby's worker and her family. This team's job was to help the family members elucidate their needs and develop a plan for meeting them.
A lesson the whole service community learned from Cindy's experience was that the best care was also cost-effective and outcome-driven. They learned how, if Cindy had lived, significant savings would have resulted from Kaleidoscope's approach to Cindy and her baby by avoiding long-term hospitalization as a boarder baby, the normalization of Cindy's life, and her ability to become more self-sufficient and less burdensome to society. These outcomes came from her child and family team constantly monitoring her progress and changing the approach and services, based on outcomes.
Once Karl learned these lessons, Cindy helped him put them together. He learned to best help people, he had to take an individualized approach. After they learned who Cindy was inside, Karl and Kaleidoscope worked with her to develop a unique approach based on her strengths and cultural background and aimed at supporting her as a family member within her natural community. Most importantly, Karl and his staff committed themselves unconditionally to provide the help and support Cindy needed.
In the end, Karl and Cindy both found friends.
Executive Director of Kaleidoscope in Chicago for 27 years, Karl Dennis is President of Karl W. Dennis & Associates, Michigan City, Indiana, a training and consulting firm for Wraparound services.
Ira Lourie, Hagerstown, Maryland, is a partner in the Human Service Collaborative, which provides consultation, technical assistance, and training in human service policy and service system development; Medical Director of AWARE, an agency for troubled children in Montana; and a psychiatric consultant for Pressely Ridge Maryland and the Catholic Charities Villa Maria Consortium, both of which provide community-based services in Maryland.
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