By John O’Brien
After a Difficult Start…
Institutionalized from age three to twenty-three in a place where “they treated us like animals”– Mike has composed a good life, taking many valued roles: husband, father, worker, home owner, friend, organizer, advocate, mentor, teacher, neighbor. Anticipating the changes that come with aging, Mike requested funding for a person-centered plan from his case manager (a service option in his state). The case manager said that it was unnecessary for him to spend any of his budget on a plan because a new Federal Rule requires that Mike’s annual plan of care meeting be a person-centered plan. Mike, who has participated in many person-centered plans organized through self-advocacy, asked some questions about the required plan and concluded, “I still want the kind with the people and the pictures.”
Regulations that require a person-centered plan as a condition of receiving Medicaid Waiver funds introduce a distinction between Want-to-plans and Have-to-plans. Each can make a positive contribution; both must creatively respond to constraints. A good Want-to-plan supports discovery of possibilities and life direction and mobilizes a person’s allies at important moments in their lives. A good Have-to plan gives a person effective control of the Medicaid waiver funded assistance they rely on. Committed and skilled facilitators with the time necessary to prepare and follow-up make a difference to the impact of both kinds of plan. How well either process works for a person depends on conditions outside the planning process: the extent, diversity and resourcefulness of the person’s social network; the openness of the person’s community; the flexibility and responsiveness of providers of necessary assistance; the sufficiency of public funds for necessary assistance and the means for people to control those funds. Good plans will identify the current reality of these conditions and consider how to engage them.
Mike’s is a want-to-plan. At his initiative, he and his invited allies (the people) collaborate to create a customized process to address his desire to deal proactively with the new responsibilities and increasing impairments that show up with aging. Mike chose Michele, an experienced facilitator, to guide the process. Their agreement makes it clear that Michele is responsible for facilitating a process of change over time, not just a meeting. A graphic record (the pictures), created by Alex, provides an energizing memory of what emerges, a way to track and update action plans, and a way to orient new people to Mike’s intentions. Occasional check-ins and revisions guide continuing action. One-to-one meetings assist Mike in sorting through all the suggestions and offers of help he receives to assure a good fit with who he is. Mike will bring some the information generated by this work to inform the required annual person-centered support plan, but his Want-to-Plan does not substitute for it.
Mike’s experience unfolds under highly favorable conditions for any person-centered plan. He has a strong desire to assure his wife and himself the best possible old age. Reciprocity for decades of generous neighborliness, concern for co-workers and leadership in advocacy give him a diverse network to call on. He is not inhibited in asking for help when he needs it. The help he needs is largely with navigating the unfamiliar territory of selling and buying property and preparing wills and other necessary documents and demands no change in his current paid services. Hard work and careful management has accumulated equity in family home. Many Want-to-plans will need to include provision for strengthening or establishing the social and material conditions for moving toward a desirable future.
Want-to-plans can also originate in a person’s positive response to an invitation to join a process of organizational change. This sort of plan poses a challenge that an organization must stretch its capacities to meet.
Have-to-plans are a necessary step in determining expenditure of Medicaid funds on services to meet the assessed needs of eligible people. They are the final responsibility of system staff assigned to coordinate services. While the process can vary to accommodate a person’s preferences, the process and resulting plan must comply with detailed standards. The New York OPWDD Person Centered Planning Regulation Checklist enumerates 23 requirements, 21 of which track US Federal Regulations.
Have-to-plans serve a worthy purpose. The rules set conditions for the person to direct the meeting, understand the results and assure that the person-centered service plan documents the person’s needs strengths, preferences, goals and appropriate services.
This checklist item, based on a Federal requirement, identifies the intended result of Have-to plans:
2‐5. The plan documents the necessary and appropriate services and supports that are based on the individual’s preferences and needs and which will assist the person to achieve his/her identified goals. [Complies with CFR 441.301©(2)(v)]
This form of words sets Have-to-plans in the context of publicly funded disability services. Offering increased influence on which available provider(s) will serve a person and how those services will be of assistance is a clear benefit of Have-to-plans when there is a real choice among providers with a capacity to individualize supports.
This standard also locates a tension that constrains Have-to-plans as two impulses struggle with each other within the same sentence. One impulse, energized by commitment to self direction and the development of people’s strengths, expresses the life a person wants to live and the supports that they prefer to live that life. The other, tied to the historical anomaly of funding US disability support as if it were a medical service, aims to select necessary and appropriate services that are clearly linked to professionally assessed need. State policy can bias the struggle toward one impulse or the other. In some states the person centered plan is bracketed between an assessment of need that involves an extensive inventory of a person’s deficiencies and writing an Individualized Service Plan (ISP) that must demonstrate a direct connection between assessed need and specified services and avoid public funding of “wants” or “lifestyle choices”. Without the skillful facilitation of an intentional shift in perspective, a Have-to-plan will be primed by a focus on deficiencies and develop within unconscious boundaries set by judgements of what can realistically be funded.
A Want-to-plan can safeguard a Have-to-plan. A person and those who care can choose to create a space outside the world of disability services for conversation about a person’s identity, gifts and capacities and the circumstances that offer the best life chances. Often, as with Mike, some action will result from this conversation that requires no change in publicly funded services. When the sort of changes in services that require a Have-to-plan are necessary, a person and their allies have a foundation for negotiating what they need from publicly funded services.
 See for example, NJ Division of Developmental Disabilities (March 2016). Supports Program Policies & Procedures Manual (Version 3.0).
 Other agreements might suit other circumstances. A different person might agree to fill the necessary follow up role.
 Denigrating graphic records has become a cliche criticism of person-centered planning (“people have colorful pictures on their walls but their lives are unchanged”). Lack of commitment or capacity for creative action seem to me more likely causes of inaction than a vivid record of people’s thinking does.
 http://www.opwdd.ny.gov/sites/default/files/documents/PCPChecklist.pdfThe 22nd standard, specific to New York, defines a person-centered planning process as a right and requires written notice of that right. The 23d assures that all relevant attachments are filed with the plan. The rule itself, Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment
Reassignment, and Home and Community-Based Setting Requirements for Community First Choice (Section 1915(k) of the Act) and Home and Community-Based Services (HCBS) Waivers (Section 1915(c) of the Act), was published in the Federal Register on January 16, 2014.
 You can view Mike’s witness to growing up in an institution and a snapshot of his life today in this 2015 TV investigation into his state’s continuing operation of institutions: http://www.king5.com/news/local/ investigations/wash-decades-behind-in-serving-developmentally-disabled-1/48265785
What it is?
Person Centered Planning is a process focused on celebrating the gifts, talents, and dreams of a person, and on helping that person develop action steps to move closer to their dreams and goals. It involves 4-5 gatherings, usually in the person’s home, where friends, family, and others chosen by the family, brainstorm together about how to enrich the life of the person with special needs.
Gatherings are facilitated by people who listen, ask questions and draw pictures
and words that represent the desires of the focus person.
What makes it special?
Person Centered Planning is deeply personal. It is done specifically to listen to a person’s feelings and goals without judgment. It is done in a sensitive way that truly honors who that person is; Person Centered Planning explores all life domains, and future dreams. It is done to empower a person and his or her family to develop action steps that will support that focus person, and enrich his or her relationships.
How you can find out more about person-centered planning?
Workshops are sponsored yearly by Parent to Parent and local school districts. Anyone is welcome to attend. At the workshops, young people and adults who have experienced Person Centered Planning share their experiences about how
Person Centered Planning has affected their lives.
For more information about workshops, or to learn more about how you can develop a Person Centered Plan for yourself or a loved one,
please call Michele Lehosky 253-565-2266; firstname.lastname@example.org
Sponsored by Pierce County Parent to Parent in partnership with PAVE,
Peninsula, Franklin Pierce and Clover Park, School Districts.
At the age of 56, a single parent from the baby boom age, my youngest son is now 26, and at this time in my life I need to plan for my retirement.
In a few years I will be heading toward the twilight of my life, so I need to take into account how that affects the life of my son, Kyle, who experiences Down Syndrome. Just like many families who live with and care for their adult sons and daughters for most of their life, it is my responsibility to share vital information that I might be the only one who knows, such as how, what, when, and where services are to be received. This way all the hard planning that has made his routine and the quality of life possible can continue even when I’m no longer able to care for him or myself as I age.
Up to this point most families don’t plan for such events, thinking that they will outlive their loved one with a developmental disability, brushing aside thoughts of what the future might hold for them. If I don’t think about it won’t happen. So usually what happens is when the parent or care giver has a medical emergency there is no plan of care or support for themselves or for their adult son or daughter with a disability, leaving both in need of a plan of care. It will be important to identify who it is left to sort through the maze of services, or lack of services, to help during this very vulnerable time.
Person Centered Planning is a tool that is used to help people plan for the future. Just as you plan along awaited trip you use a simple guide to help you make the journey comfortable to enjoy your precious time you have set aside. When it is time to plan, bring together the people who will be in the family’s life at that critical time. Usually, it is left up to siblings who have not been very involved in their sibling’s day-to-day care. Their parents did a really good job of caring for their sibling, but most find out the hard way what the daily routine looks like for their sibling.
By using the Person Centered Planning method, you have a document on hand so that you are able to have input into a plan of care before a crises.
Aging parents must start thinking about drafting a will and learning about trusts for your peace of mind. Think about the use of Person Centered Planning as a tool, as it can help relay your wishes and concerns. Share information about their care, like who their doctors are, what their care plan is, and other things like a living will. This is in case the parent loses their ability to share vital information to the people who care and to service providers who need to plan action steps. What history of care has been provided, what are the needs, who can help, what is the plan of care when you or I are not able to communicate the needs of our adult sons and daughters? As we age, the plan becomes the family plan, not just for the individual but for the whole family, including the network of support and those who will be left to sort things out.
The process helps pull together all their important information so that people who come in and out of the person’s life have something with which to help plan a positive quietly of life for the individual and their family.
Pierce County Parent to Parent has also put together a care notebook that helps families keep important information together for when the parent is no longer able to speak for themselves or share information that is important, not just for the individual with the disability, but for the family itself.
For more information on Person Centered Planning contact Michele Lehosky at PAVE by email at email@example.com or by phone at (253)565-2266.
Reunited photo courtesy Jenn Durfey via flickr