Frontline Initiative Supporting Families

One of the many Direct Support Professionals (DSPs) our family encountered over the past 26 years worked hard at developing a good relationship with us. In addition to the required annual and periodic review meetings, she would call us up and ask, “Well, how are things going?” She would carefully listen to our responses as we talked about our son’s support services.

She would ask what was going well and not so well. Usually these conversations took less than 15 minutes, but, nonetheless, conveyed her concern about the quality of the supports being provided to our son with disabilities. After these conversations, more often than not, she would help us solve problems with his supports, especially when things were not going as well as expected. This act of keeping in touch and discussing our satisfaction with the support services our son received was very important in building our working partnership. One day she called to tell us that she would no longer be able to work with us and our son, as she had taken another job. It was time for her to move on. This was a very sad day and we realized that we would have to start all over to build a new relationship with someone else. Unfortunately, this is a reality of support for my son — that good people, who we learn to trust, respect, and communicate effectively with will at some point move on.

Over the past 26 years of parenting we have had relationships with many different people, including case managers, physicians, school personnel, Frontline Supervisors (FLSs) and DSPs. Some of these relationships have been great, some okay, and some not so good. So why does this one DSP stick out as being memorable? Because she took time to listen, to get to know us, and to develop a partnership with us and our son. She made a personal connection by showing she cared about what was important. She respected who we were as a family and as individuals. She engaged and involved us in every aspect of planning and implementing support services. She openly, honestly, and effectively communicated about resources, supports, and services. She worked to make changes when change meant better supports for our son. She worked hard to gain our trust and told us that by developing a good relationship with us, it helped her support our son better. I have always respected the lesson she taught us.

Likewise, as professional community human service providers, both my husband and I have worked with families and individuals with disabilities for over 30 years. We understand from two different perspectives (being parents of a child with disabilities and being DSPs) the importance of having quality relationships with the families and the individuals we support. We know that families play an important role in the lives of people with disabilities. They are there when things are good and when things are not so good. They are often the only people who stay in the person’s life as different support workers come and go. They know the person’s likes, dislikes, and history better than anyone else. They are one of the most valuable resources DSPs and FLSs can have when it comes to learning and knowing about the person they support. 

We have learned to value the differences families have — in culture and ethnic backgrounds, in beliefs and values, in socioeconomic status, in family histories, and in experiences with DSPs and FLSs. We know that it is essential to get to know these differences, appreciate them, and work with each family so we can provide the best supports, not only to meet the wishes of the individual we support but also to take into account the expectations of the family. We have learned that building and earning trust helps us provide better supports. We have learned to communicate honestly and effectively and we understand and respect the experience, expertise, and knowledge the family brings to the partnership as we all support the person with disabilities.

When I worked with my husband supporting individuals and families by providing independent living skills, one family, and in particular one dad, exemplified the importance of relationships. He and I both made a special effort to frequently keep in touch. He would call to get a regular update on his daughter’s progress and to report both the good things he saw happening and the things he wished would change. We talked almost weekly and shared ideas about how supports were being provided and how they could be improved. We talked about what was working and what was not. If we needed to make changes, we would include his daughter and wife in the discussion and plans. When his daughter wanted something different than what he and his wife felt was in her best interest, all of us were able to talk, laugh, and work through these disagreements as partners. It was so refreshing to work with him. He was always honest and straightforward in his communication with us. He shared opinions, stayed organized, kept an open mind, and asked us for feedback on how he could communicate better with us. He said by developing a good working partnership with his daughter’s DSPs he knew she would get better supports. We developed our working relationship and partnership because we respected and trusted each other’s points of view even when they were very different. Our common ground was staying focused on what was most important — making his daughter’s life better.

As a result of these experiences, both as a parent and as a DSP, here are some ideas DSPs and families should consider when trying to develop their own working partnerships —

1. Understanding
2. Honest communication
3. Trust
4. Respect

Understanding

1. Here are four suggested steps to develop greater understanding between DSPs and families — Start by knowing who you are. Think about who you are and what you believe about culture, family, and disabilities. What you believe and value will color how you act and react to what others believe. You need to understand yourself before you can understand others.
2. Second, learn about what the other person believes and values. Ask what they believe about culture, family, and disabilities. Take time to reflect on the similarities and differences in your beliefs and theirs. Remember that past experiences, frustrations, and history color reactions in similar situations.
3. Third, acknowledge, clarify, and, most importantly, show respect for the ways in which you differ. Try to feel comfortable discussing these differences, but remember to emphasize the similarities in order to find common ground for your interactions.
4. Finally, begin to adapt how and what you communicate about your respective points of view. This will help both of you begin to collaborate, problem solve, and synergize about building the supports and services necessary to add quality and dignity to the life of the person you support.

Honest communication

Honest communication is essential to a working relationship and partnership. Both family members and DSPs have to be able to communicate effectively and honestly or the relationship will be faulty. Honest and effective communication is accomplished through a series of conversations where each of you listens, reflects, clarifies, and practices exchanging ideas. One technique is asking each other open-ended question that cannot be answered with a simple “yes” or “no.” Ask about feelings, ideas, values, and reasons for the ideas that are being shared. Expect to disagree and know that by continuing to work on how things are said as well as concentrating on what is being said it will make it easier to reach consensus. The focus in all communications should be how to improve supports and services for the person with disabilities.

Trust

All relationships among families, individuals, and DSPs require an element of trust. Trust is earned. DSPs and family members can earn each other’s trust by following through with what you say you are going to do. In other words, don’t make promises you can’t keep. Trust is earned by respecting each other. Trust should not be assumed by either the family or the DSP but rather worked at by every action you undertake.

Respect

The final cornerstone in developing working relationships and partnerships is respect in all interactions. Respect, unlike trust, is given by both the DSP and family members to each other. It is given by recognizing and valuing each other’s strengths, knowledge, and expertise. Respect is shown when communication and interactions remain positive and when both parties work toward mutual collaboration to resolve conflicts and solve problems together.

The individual being supported, their family, and their DSPs must and should continually work towards developing a working partnership in order to best support the person with disabilities.