Frontline Initiative Documentation

Is it Paperwork? Or, is it the person?

Many agencies have undertaken person-centered planning processes to assist in better understanding each individual with disabilities who receives support. These processes typically have two parts: (1) understanding a person as a person, including their past and what is important to them; and (2) identifying what kind of better future for the person is worth working for. Many of these processes take time. Some take the form of interviewing people significant to the individual, visiting people and places the individual used to know, or involving group processes. Often not all the Direct Support Professionals (DSPs) who support an individual are involved in these meetings or interviews.

 As staff leave and new staff come into a person’s life, important information about an individual is lost.

The information obtained about a person through these processes is often rich and vital and helps DSPs really understand that person as a person. For instance, in one group home there was a woman named Janet who was often quite aggressive — she had hit staff, other people who lived there, and put holes in walls. The DSPs who worked in that home primarily saw the woman as her behavior, and that behavior ran the whole home. If Janet was having a bad day, the whole home had a bad day. If Janet had a good day, everyone did. Interviewing her family about her past through a person-centered planning process, however, really helped Kate, the program coordinator, understand the woman better. Kate came to understand how traumatic Janet’s past had been — how often she had been moved from home to home, from institution to institution. Janet had often been tied down, and been given medications to control her behavior, which had given her terrible reactions. In one of the most terrible times in her life, Janet was in constant horrible pain for a year, and was acting very badly because of the pain. Her mother had to do a lot of work to find out what was the real cause of Janet’s behavior. Once she found out that it was a medical issue causing the pain, she started working on getting the institution to do what was really a very simple resolution. But, it took them a whole year to do it, with Janet in pain the whole time!

When Kate left the family home after interviewing Janet’s parents, she had a new sympathy for what Janet’s life had been like and a brand-new understanding of Janet as a person, why she acted as she did, and what was important to her. Even though Kate had known Janet for ten years and had thought she knew everything about her, after the meeting with her parents, Kate said, “I never knew Janet’s life was so hard.” The staff started supporting Janet in different ways — helping her have more control over daily decisions, meeting more community members as friends, expressing her interests like country line dancing and flowers, and getting a job at a florist shop. The problem behavior almost completely disappeared. How can that understanding of a person as a person be documented and passed on so all current and new staff understand Janet that way and how to support her? It would need to be written down or otherwise documented in some way so it could be shared. “Paperwork” would be much more than just papers — it would be an avenue to helping Janet have the life she wanted.

Here are some ways different agencies have used to document a person’s past and their interests —

  • Make a videotape telling the story of a person’s life that all new DPS’s have to watch when they start working with that person.
  • Complete posters that graphically show different themes in a person’s life — their interests and their past. However, it’s important to have a written or videotaped explanation of the poster, as the symbols and pictures are not always understandable.
  • Show photos of favorite activities and people — but again, it is important to have a written or taped explanation.

The second part of person-centered planning is also important to document. As persons with disabilities are supported in pursuing their interests and dreams, it is also important to pass on important information and progress to others supporting that person. For instance, let’s say a DSP named Mary takes Janet country line dancing, to volunteer at the library, to church, or to a Jaycees meeting. Perhaps Mary knows who the important people are in the church who really know Janet and her family, and where Janet likes to sit. Perhaps Mary knows which officers of the Jaycees really like Janet and who help her get signed up for activities. Mary probably knows what Janet can order something to eat and drink when she goes to line dancing, and which lady at the library is most helpful to Janet.

Ideally, that information is documented for others who might end up taking Janet if Mary is sick, or if Mary leaves the agency. Ideally, if Mary left and a new DSP named Lily started, Mary would take Lily to church or to the Jaycees meeting and introduce Lily to the people there who are important to Janet. Mary would also explain the “informal rules” of the group – such as what part of the meeting is for meeting and what part is for eating, how you need a partner for horseshoes and how to get the best partner. Documentation is also important for the interdisciplinary team — the parents/guardians, case manager or social worker, and everyone else who plays an important role in the person’s life. Without on-going effective documentation, the richness of a person’s history may get lost.