WORK WITH FAMILIES
Stephany Bryan and Luanne Southern
t has been said that one of the best ways to understand another person’s point of view is to walk a mile in his or her shoes. This is what it takes for professionals and agencies to begin to understand the daily journey families of children with special needs must take throughout their lives. It also describes what families and communities must do to realize the challenges agencies and professionals face in their work with children with special needs. In this article, we will share ten key steps for successful partnering that have allowed us—a family member and an agency professional—to "walk in each other’s shoes." These steps have enhanced our knowledge, broadened our view, challenged our ideas, and created a wonderful, evolving partnership.
The meaning of partnership
Many people have asked us how we have come to understand and accept the philosophy and values inherent in a system of care that involves partnering. This involves putting words into action and understanding other people’s points of view. Actions, we know, speak louder than words. So how can others learn to understand and collectively put the value of family-based care into practice? A process must occur within an individual person, an organization, and the broader community. There are ten steps in this process. They do not always occur in a particular order and they may occur simultaneously, but they must be experienced as part of the evolutionary process of forming effective family-professional partnerships. The process can take months or even years to evolve, but it is well worth the time and effort
Ten key steps
Acknowledge that you must do things differently. As families, we must take responsibility for our children and stop assuming that they are broken and that the system will fix them. We must admit to ourselves that we too have to do things differently, and we must acknowledge that we have responsibilities as parents to be accountable for what happens to our children. This step requires us to see ourselves as part of the solution by:
As professionals, we must admit that if the system were not broken, it would not need to change. There is always room for improvement. If we work in an agency that we ourselves would not access for our own children, then we must let go of the old way of doing business. We must ask ourselves this question: “If it’s not good enough for my child, why is it good enough for someone else’s?” Professionals must be willing to admit the following to families:
Be honest—admit your limitations. For families and professionals, this requires trust and mutual respect. Individuals must respect one another’s experiences, roles, and contributions, regardless of how big or how small. To do this requires unlimited patience, integrity, and at times restraint. It requires us to monitor our internal thoughts and feelings and carefully take great risks in being vulnerable in front of others.
This task of putting personal feelings aside and working toward a common goal sounds easy, but it has proven to be very difficult for us. Sometimes we take several steps forward on the journey only to take one back. It is important to acknowledge how hard the work is and never to lose sight of the common vision. There have been many times when, as family-professional partners, we have relied on each other for feedback on areas needing improvement in order for the change process to move forward. Remember that it is always easier to go back to the old familiar ways of doing things than it is to do something completely new and different. This is why a relationship built on mutual trust and respect is so important. When your community reaches the stage where families feel safe enough to be honest and express themselves and their point of view — no matter how difficult it may be to hear — then you know you are on your way!
Face your fears and discuss them mutually. One of the greatest things about developing family-professional partnerships is that you discover you share the same fears. The first fear to acknowledge is the fear of failure; the second is the fear of success. It may sound ironic to say that the two largest fears to confront and address are the fears of failure and success. However, it has been our experience that these fears are very real as we try to implement changes in the system by creating effective parent-professional partnerships.
Fear of failure — When we know in our minds what a successful system of care would look like in an ideal world, we can become paralyzed by this vision. It is important to remember that professionals and families are doing things that have never been done before in their community, and they often must make things up as they go. This requires flexibility and the acknowledgement that there may not be a right or wrong way of accomplishing a task. It is necessary to accept the ambiguity of the situation and move on despite minor imperfections.
As families, we have often heard all about what we have done wrong and where we have failed our children, and we blame ourselves for our children’s problems. So when we hear about a promising way of being involved in improving the way we receive assistance, we are skeptical. When we are hired to work as parent professionals, we begin to feel pressure to succeed in order to prove ourselves worthy of the work. We put undue pressure on ourselves to know all, and we become afraid of asking for help for fear that professionals will question our abilities. We feel we must work harder in order to become equal players in the workplace, because we are used to being blamed and shamed. We carry the burden of representing all families through our own individual work. We often fear that if we become too familiar with the bureaucracy by forming effective partnerships with professionals, we will lose our ability to be effective advocates for change and will become token voices.
For professionals, bringing family voice and choice into the bureaucracy is threatening. We fear that our peers will think we have betrayed them by allowing family members to witness the strengths and weaknesses of the bureaucracy in action. Our initial reaction is to want to protect family members from the realities of the day-to-day struggles of operating in a large public system. In reality, as a professional, I have found that it can be beneficial to have a parent there to support me as I work within the system. I had become so accustomed to working within the constraints of the bureaucracy that it wasn’t until a parent pointed out that things needed to change that I was able to accept the harsh reality of my work environment.
Fear of success — The second fear to acknowledge is the fear of success. Both families and public mental health professionals are used to thriving in systems that are constantly changing, frequently operating from crisis to crisis, and often criticized as inefficient, unsuccessful, or ineffective. Although these modes of operation may seem atypical to the casual observer, to many families and professionals they are considered typical modes of functioning. As a result, when something comes along that promises positive changes to this "normalcy," the initial reaction is fear. This fear comes from the reality that many of us have not lived or worked in environments that have been considered successful. To be successful is an unknown mode of operation. We must develop a mutual vision for what success would look like for our community and work as partners toward celebrating the successes when they arrive — one step at a time. We need to be ready to answer the question, “If we were successful, what would our community look like?”
Sharing our fears with one another reminds us that in order to support each other in the work, we must present a unified front when faced with situations that threaten our ability to be successful. This means that we should attend meetings together as a parent-professional team and not make decisions without the mutual input and recommendations from parents and professionals as equals. This requires us to confront each other when we see that we are letting our fears overwhelm and paralyze us.
Discuss your expectations and assumptions. One of the most helpful steps in forming family-professional partnerships is understanding and acknowledging expectations (spoken and unspoken), assumptions, and preconceived notions about one another. Once this dialogue occurs, we discover that parents and professionals harbor the same expectations of each other, expectations based on the values of honesty, dignity, and respect.
This step in the process is even more important when parents and professionals work together on a daily basis as peers. For example, to many professionals and traditional systems, the idea of hiring a parent into a position that pays the same salary as a licensed professional is absurd. As a result, unexpected bureaucratic obstacles may be in place to prevent the hiring process from occurring. In addition, many traditional bureaucracies are built on a hierarchical system of management, with supervision coming from the top down. Consequently, when a parent is hired to fill a management role, the bureaucracy expects the person to be supervised by a professional. The professional must be willing to break out of the traditional mode of operation and partner with the parent to advocate for change as a team. Parents and professionals should talk openly with one another about why these expectations, assumptions, and notions are there in order to seek to understand and then change the way business is done.
It is the responsibility of both the parent and the professional to promote the success of the partnership by providing support, education, training, and technical assistance to each other. This requires open communication between the individuals regarding what is expected.
Admit to the anger, frustration, pain, and disappointments of the past and redirect those feelings to use them in a positive way. This step in the process is crucial in beginning to form effective family-professional partnerships.
It is often difficult for professionals to hear families speak in strong, angry voices about how the system has failed to meet their needs or how they have suffered because their children did not receive appropriate services. It is often difficult to know how to respond in these situations. You may feel compelled to become defensive or go into detail about why the system was unable to deliver. Discounting a parent’s feelings by becoming defensive only makes things worse. As a representative of the system, you must take responsibility for failing to meet the families’ needs and ask for their assistance in changing the system for the better. At this point, it is crucial for you to walk in the families’ shoes. Listen to each family’s reality, consider how you would feel in their situation, and then work to make things better. Families are more than happy to provide input into being part of the solution —especially if they are listened to and their pain has been acknowledged.
Professionals must give families the opportunity to voice their feelings and then redirect them in positive ways in order to assist in the change process. For example, a parent in our community struggled for years with the devastation she felt upon giving up custody of her special-needs child, which she did at the urging of others. Her painful struggle propelled her to become a community spokesperson. She now advocates on behalf of special-needs children and their families who are in situations similar to her own. She has since been appointed to local task forces and state legislative committees. Her knowledge and experiences have been invaluable to the change process.
Families often say that it is through the pain of past experiences that they have gained the internal strength and capacity to become stronger and thus more determined to be part of the solution. When families are truly partners with professionals, the difficult experiences of the past are transformed into the strengths and hopes for meeting the vision of the future.
Maintain a healthy sense of humor and remember to focus on strengths. Developing partnerships is hard work and mistakes are not uncommon. It is important to focus on strengths, while also realizing that we learn from our mistakes. It is okay to laugh at our own mistakes, as long as we also learn from them.
Focusing on strengths can involve time set aside for sharing sessions. Parents and professionals may also want to use inspirational books, jokes, pictures, and quotes cut out of magazines to lighten the mood. These are some ways to take a moment to focus on life outside of the work environment and regroup if tensions are running high.
Agree to disagree and mutually resolve differences. The popular saying "You can never please all the people all the time" is especially true when people with varied experiences, assumptions, expectations, opinions, and ideas are brought together on a project. We always make it a rule to respect the views of others. We talk through disagreements one-on-one, and often ask someone we trust to work through the conflict with us. If you cannot mutually agree, you must agree to disagree, acknowledge that you are doing so, and not take the interaction personally.
Acknowledge and celebrate the experiences that have brought you to where you are today. Take time out on a regular basis to reflect on the accomplishments that you and your organization have made. We try to start every staff meeting by asking participants to note the successes they have had. Write down these success stories and keep them on hand to use as catalysts for moving forward, especially on the days when work is particularly difficult.
Acknowledge and celebrate cultural differences. Plan both formal and informal ways of gaining knowledge and understanding of cultural differences. Monthly potluck lunches that focus on ethnic foods are a good informal option. Ask everyone to bring a dish that is part of their culture — something that is meaningful to them. People can then explain the meaning behind the dish.
Recognize that when positive family-professional partnerships begin to emerge, the strength of the relationship will be tested. As the family voice becomes more mobilized and professionals begin involving families in everything from policy development to service system design, some of those involved may feel threatened. Some may even attempt to sabotage the partnership with gossip, rumors, and false accusations. This can be minimized if the community develops a common definition of professional/parent partnership. Those who play key roles in defining the relationship are less likely to feel threatened by it.
Making the journey
The business world has utilized a market-driven, customer-based recipe for success for decades. In our opinion, it is time for child-serving social service systems to follow suit. The first step in accomplishing the task is to understand who your customers are by walking in their shoes. In addition, it is the responsibility of those who are already walking comfortably to understand that those who are just breaking in a new pair will need to be given the time required to achieve comfort.