Getting the alignment right: matching support with the plan, the vision and the particular needs of the person
This article is based on notes from a planning session in which a young woman and her family worked towards finding a better alignment between the vision for her life and the way her support was organised. The name of the young woman has been changed.
The attached flowchart provides a graphic overview of the plan which is described in more detail in the article.
Fiona lives in her own self-contained apartment at her sister's place. She had been keen to move out of her parent's home for some time but her family felt she still needed support in living independently, so this is an interim arrangement.
Fiona is looking for work but at the moment she volunteers two mornings a week at a local nursery owned by a former teacher from her school. She helps with watering plants and moving stock. She would like this to become a paid position but that is not likely at the moment. She is happy to spend time at her apartment, however, because she has a small garden to look after and helps look after her three nieces and nephews on the weekend and after school. Fiona has four hours of support from a disability support agency each week. She usually uses these hours to go to the local shopping centre for lunch or a cup of coffee and then to go to the movies, another of her great interests.
The big problem for her at the moment is how to become better at cooking and eating well. This is the main stumbling block in her plan to move into a more independent arrangement. She has dinner with her sister's family on most weekends but does not want to eat with them all the time. Most evenings she is happy to walk down the street to get pizza or Thai takeaway. Her mother is concerned about this as Fiona is putting on a lot of weight and this is beginning to impact on her particular health issues. To make sure that Fiona eats well she brings over a meal for her most evenings. She also brings meals to leave in the freezer but Fiona doesn't really like having to remember to defrost and reheat these properly. Anyway, she likes takeaway food. Her mother and sister have tried to cook with Fiona but she is not interested in doing that with them; it feels to her like being bossed around.
While Fiona's life worked reasonably well for eighteen months with these arrangements in place, she and her family still hoped that Fiona could live more independently. Fiona's parents were getting older and her sister was planning to move interstate soon as her husband had been offered a good job in Melbourne. With this imperative, her family asked a few friends to meet with them and a planning facilitator to help think through how their long term vision for Fiona's life could be kept on track.
The planning session centred on Fiona - her strengths and abilities as well as her challenges. The group also talked about what was happening for Fiona now in terms of how she spends her time and the interests she has. With that picture in mind, Fiona and her family then shared with the others in the group the vision they had for her life: that she would be living a healthy life as independently as possible in her own home, either on her own or with other people she chose; involved in a community where is was well known; with love and support from her family and friends.
A few good practical ideas emerged from this planning session. There were suggestions regarding work and some practical ideas to help Fiona manage more her own housework and washing - all things she wants to be able to do to become more independent. One of the major goals focused on Fiona's eating and health. It was one of Fiona's cousins who suggested using the four hours support each week in a different way, a way that would better match the vision for Fiona's life. "We all know that you like going to the movies and eating out, Fi", she said, "but not many people get to do that every week. What about using that support worker to do some different things."
Step 1 - support from the service provider
The discussion resulted in an action plan of having the support worker write up a cooking plan for the week with Fiona, go shopping with her and then come home to cook a meal that could last for two nights and set up another that would be easy to prepare. This was the first step. Fiona resisted cooking with her mother and sister but, because she liked the young woman who was her current support worker, she said that she would give it a go. The next step in the plan was for Fiona to invite, first her family, and then some friends, over to lunch every now and then on weekends.
The plan took a while to get going. It was never going to be a quick fix but Fiona did start to enjoy the change in her week. She became more interested in cooking and also in improving her fitness. It all went well for a couple of months but then the original support worker moved on. The next person who came was not at all interested in cooking, nor in Fiona's growing interest in healthy food and fitness. Fiona did not lose her interest all together but her family was disappointed that the service did not seem to appreciate the importance of matching the support worker to the role that was really needed in Fiona's life. As Fiona's mother said, it was easy for them to find someone who just wanted to go for lunch and see a movie!
Step 2 - support through a self-directed arrangement
Fiona and her family persisted with their plan and the original service provider for a few months but were increasingly dissatisfied with how things were going. There were many changes of support worker and limited response to the family's request to talk about what was really needed in the role. After talking with some other families and attending a workshop about self-direction that was held in Brisbane they made the big decision to change to an arrangement of directing Fiona's funding themselves on her behalf. With the flexibility this arrangement offered they could find other ways to meet the challenge of continuing Fiona's cooking and healthy eating plan. There was also some extra money in the budget because the Host Provider fees were less than the administration fee charged by the original service.
Because they are not limited to employing support workers from disability agencies they have now engaged a local woman to work with Fiona each week. She retired early from her job but has always been interested in cooking and was looking for some part time work. She and Fiona get on well and Fiona visits her at home at least once a month to help her with her gardening. Because the cooking and eating plan is now going well and there is some extra money in the budget, Fiona has also engaged a personal trainer to help her with her fitness. She does that once a week and also walks with her cooking person in a women's early morning walking group.
Fiona's family know that there will always be changes and challenges to keeping their vision for Fiona on track. With the opportunities offered by self-direction, however, they feel that they are at least more in control of what is happening. They can more easily keep the day to day support aligned with the vision they all share of Fiona living the best life she can.