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How can I play a significant role in Lifespan Planning for my loved one?

First, everyone must become familiar with the Lifespan Planning process for adults with autism and other developmental disabilities. There is an actual step–by-step “process” that exists in which consultants are available to walk families through each of the steps of the legal and financial planning aspects of planning. Where the process usually begins to get fuzzy (even for those financial planners and estate planning and trust attorneys), is in the question of how to plan for community housing options, residential support services or group homes. ARCHway provides information on Lifespan Planning, but most importantly, it provides a step-by-step roadmap for planning community housing options and guides families with loved ones who have autism to find and train individual support staff properly. ARCHway also provides advice for navigating state developmental disabilities agencies and services available, and provides assistance with the complex policies and procedures of developmental disability systems across the U.S. ARCHway can also assist with finding existing group homes, and can provide advice on developing your own local community homes.

Second, we feel it is important that parents who have loved ones diagnosed with autism become familiar with the approach called “Person-Centered Planning” in order to shift away from the passive mindset that says, “The system will take care of everything,” to a more active, realistic perspective that says, “The needs and wishes of my loved one will guide the process, first and foremost.”

Person-Centered Planning or Mapping: Creating a vision

Person-Centered Planning or Mapping is a process that is used to develop a rich and meaningful life for an individual with a disability, including those with ASD. It is a life planning process designed to assist someone to make plans for their future and increase their personal self-determination and independence. The focus is on integrating the individual’s capacities, abilities, and interests through meaningful activities in the places they spend time, such as at school, home, neighborhood, and work settings. The process is utilized by a team to answer a series of questions that lead to the development of a vision for the person and a plan to actualize the vision.

There are various models for person-centered planning. Some examples are Lifestyle Planning (O’Brien & Lyle, 1987), Personal Futures Planning (Mount & Zwernick, 1988), McGill Action Planning System (MAPS) (Forest & Lusthaus, 1987), Planning Alternative Tomorrows with Hope (PATH) (Pearpoint, O'Brien, & Forest, 1993), and Group Action Planning (Turnbull & Turnbull, 1996). The maps can also be created by a skilled facilitator to best support the team in moving in a direction that is positive for the individual. Person-Centered Planning was adopted as government policy in the United Kingdom through the “Valuing People” white paper in 2001, and is accepted as good practice in many counties throughout the world.

Go to the Pacer Center for a full listing of many excellent online resources for Person-Centered Planning

For a manual to assist in training the Person-Centered Planning facilitator, go to: http://rtc.umn.edu/docs/pcpmanual2.pdf This document also provides very good information on the comparison of a system-centered approach versus a Person-Centered approach.

For a detailed history of Person-Centered Planning and clarification on the difference between seeing someone as a genuine person in need of supports, rather than someone broken that needs to be fixed, go to: http://thechp.syr.edu/PCP_History.pdf You may especially wish to note the comparison charts on pages 7 and 15 which are very clear and informative.