For individuals living with autism spectrum disorder (ASD), making choices in day-to-day activities and life, such as where to live, who to live with and how to spend time in the community, can be challenging. Regardless of how the person with a disability functions, the power to choose and make decisions is often guided and directed by family members or professionals. Person-directed planning is about empowering individuals to make their own choices for the future.
Person-directed planning approaches are rooted in the values of self-determination, citizenship and individuality. Trained facilitators assist the focus person and their support network in mapping out goals, as well as who will assist in the process of achieving their goals, through a series of meetings. The facilitators are equipped at supporting a person by utilizing a number of tools to help draw out their experiences, dreams and vision. Many organizations that provide support share in these common philosophies and approaches.
The term, focus person, refers to the individual for whom the person-directed planning is intended. The focus person has the final word over what his/her future may look like. It may be easy to defer opinions and decision-making to professionals, but listening intently to the individual may help with insights into what is important to him/her. For a person with autism who has an enthusiasm or a subject that is highly motivating, this may be an area to explore in a deeper way to create opportunity.
The role of the support circle (those assisting and supporting the focus person) is to share their input and not make the decisions for that person. This shift in thinking may present challenges for parents as their children reach adulthood.
Person-directed plans often incorporate several tools to help the focus person become more involved in his/her plan. Traditional forms of graphic tools include Making Action Plans Succeed (MAPS), Planning Alternatives for Tomorrow with Hope (PATHS) and Seeking Enjoyment Every Day (SEED). These tools help enhance communication regarding abstract concepts. Because many individuals with ASD are strong visual learners, incorporating these tools can enhance their strengths.
Discussing the strengths and skills of an individual with ASD is a cornerstone of the planning session. Referring to strengths can help broaden how the individual can use skills in the future and how these strengths can be enhanced to create future opportunities in work and community life. This is referred to as shaping areas of interest.
Keep in mind that plans can change. A person-directed plan is a living document that is supported by a trained planning facilitator. As a result, plans can change as a person transitions through different stages of adulthood.
The early stages of adulthood are for exploration and finding oneself in the community. This should be reflective in planning as it is imperative to seek ways to create opportunities for young people to explore what they find meaningful.
This is very important to keep in mind, and this is why plans are referred to as a living document. They likely will change based on a person’s experiences and those who come into the person’s life.
Planning should begin well before the final year of high school.
Good planning includes:
Taking time to be proactive and learning about what options are available, depending on what the individual wants to do.
Helping to map out a series of actions that can help inform the person about what his/her choices are after high school.
Identifying those in a person’s support circle who can help with these processes.
Involving a trained planning facilitator. These professionals have a good sense of the types of supports that are available in a person’s community and what they can benefit from.
In previous models, the focus person was not asked to be part of a meeting where he/she was the focal point. Many on the autism spectrum often were left out of this dialogue because the concepts discussed were too abstract; the planning meeting would interfere with a routine or schedule; or supporters of the plan would be out of context, which could increase anxiety.
While such examples may hold merit with some, a trained facilitator can work around such challenges and find the optimal environment and time to support the person to be involved in his/her plan. Therefore, planning without the focus person is contradictory to the core values and principles of person-directed planning.
Far too often for many on the autism spectrum, their preferences, choices and opportunities for self-autonomy are trumped by professionals who feel they are the expert and know what is best for the individual.
When we listen deeply to those who know the person best, those who have a strong rapport with them and observe the person objectively, we are able to truly see that person. This is an important practice in planning and doing, so professionals in the field who are involved in planning begin to shed the “expert role” and transform into the role of a “supporter.” Through this transformation, we are demonstrating a planning-with approach, as opposed to a planning-for approach.
Person-directed planning is not about trying to fix a problem or a behavior. In a deficit-based model, this is typically the focal point of planning. Nonetheless, it is paramount to discuss the barriers and or concerns that may prohibit a person from reaching his/her goal. For example, if a person indicates that his goal is to attend an art class-- but he has difficulty with travelling independently or may have sensory difficulties, such as hyper-sensitivity to sounds and crowds--actions and a discussion on supports should be highlighted to help the person cope with the challenges to achieve his goal. There is a significant distinction between planning based on solutions, collaboration and trust, versus one that emphasizes correcting a person’s challenges.
What a person is good at versus what a person wants to do are separate areas when it comes to person-directed planning. Not every person who is good at painting or drawing wants to be an artist. This example is unfortunately an assumption that is made far too often for individuals with ASD.
For the success of the plan, it is vital to have strategies that include what inspires the person, as well as his or her ambitions and passions. Passions are important because it enables individuals to inform others about what their dreams and visions are, rather than just focusing on what they are good at. Trained facilitators are good at drawing this out of a person, even if they are unable to verbally inform others.
For those with limited speech, it is vital to have others who know the individual speak on his/her behalf. This has been a traditional way of supporting a person in a person-directed plan. That being said, it is important to use whatever communication tool(s) the person uses in his/her daily interactions and to increase visual information as part of the plan to encourage choice making. These may include multi-media and augmentative devices, such as an iPad or a Lightwriter. A trained planner will take the time to learn about the various ways in which a person communicates and will incorporate the person’s communication system when planning.
In spite of the communication, social and consistency challenges that some individuals with autism spectrum disorder present, many on the autism spectrum are able to partake in a planning process that will impact his/her future.
Person-directed planning practices are inherently flexible and accommodate the person’s needs and communicative systems with the intention of ensuring that the person is the one driving his/her plan and making informed choices.
The actions that come from a person’s plan help clarify roles in the person’s life, and often lead to further opportunities to bring others in from their community, with the intention of creating more meaningful and sustainable relationships.
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