The Person Centered Planning Process
What is a personal plan?
The personal plan and the processes that surround personal planning are best understood in the context of a fundamental right that persons with intellectual disabilities and autism have: the right to be treated as a special and unique individual. This right is now so often taken for granted that it is frequently overlooked. However, when viewed in the light of the history of the institutional care that once was the common fate of almost all persons with intellectual disabilities or autism, it takes on significant meaning.
In most institutions of an era not so long ago, the inmates in an institution were usually locked in. Usually they lived on large open wards. Often there was a certain uniform they had to wear. Everyone ate the same meal, cooked in a large common kitchen, at the same times. Everyone arose and went to bed at certain hours dictated by the facility routine of the place they lived. Residents usually had no personal space of their own and little or no property, such as family pictures or mementos. Treatment, to the extent there was any, was almost always in a group setting. Personal privacy hardly existed, and there were few approved opportunities for intimacy. In short, staff convenience and the need for institutional efficiency trumped the individual. There were few if any ways that people could exercise choices—choices by and through which a person expresses his or her personality. The personal planning process arose as an antidote to that kind of existence.
Are there other names for the personal plan?
Yes. In Maine it is called “personal planning” because that is the name of the state statute that governs the process. (34-B MRS §5470-B) The most common synonym for personal planning is “person-centered planning” and in fact the Department of Human Services has an instruction manual called “Maine’s Person-Centered Process for Persons with Intellectual Disabilities and Autism (July 2013). (see instruction manual on DHHS web site) Other names sometimes used are “service plan”, “individual support plan” or even “individual education plan”. They all mean the same thing and they perform the same function.
What are the functions of a personal plan or person-centered plan?
First and foremost the personal plan provides a legally-mandated forum in which those who care most about the person, such as the guardian if there is one, and others such as staff or friends who know the person the best, and of course the person herself or himself, can identify all of the needs and desires of the person and then structure the delivery of services to the person so that to the degree reasonably possible the person has the supports she or he needs to live a life in which the person is safe, healthy, and happy. At least that is the way it works in theory.
In addition to this “identification” function there is also a very important “accountability” function. Funding the system of care for persons with intellectual disabilities and autism is almost entirely a government function. Resources flow from the coffers of state and federal governments, who usually act in partnership with private entities, to provide services to those who are the ultimate recipients of those services. The personal plan is the primary document that establishes and records the duties each element of the system of care provides or should provide. If services identified in the plan are not made available or are found to be ineffective, then someone or some element of the system of care may have been deficient. By recording the services promised or owed, the personal plan establishes whether particular elements of the system of care have or have not met expectations. Thus it establishes accountability.
Participants in the personal planning process sometimes find that these two functions-- the identification function and the accountability function -- are not entirely compatible with each other. For instance, provider members of a personal planning team may readily agree that the person has a certain need or desire that has to be met or should be met, but will argue vociferously over which facet of the system of care is supposed to provide the services to meet the need, or they may disagree about the language the plan uses to decide whether the need or desire has been met. Care has to be taken to make sure that no one manipulates the identification function of the plan so as not be held accountable later for the failure to deliver the services to the person that would meet the need or fulfill the desire.
I am the guardian of my adult child. What are my rights in the personal planning process?
You have the right to attend any part of any personal planning meeting affecting your ward. (See 34-B MRS §5470-B(2)(D))
You have the right to receive timely “written notice in advance of procedures and actions to be taken with regard to the development, implementation and assessment of personal plans and service plans.” (See 34-B MRS §5463)
Implementation of the personal plan has to be agreed to by the guardian. (See 34-B MRS §5470-B(6)) If the guardianship is limited, then you have final say in the facets of your ward’s life over which the probate court has granted you control. If you are a full guardian then you have final say over all elements of the plan. If the guardianship is limited, then the person has the right to consent, or not, to any part of the plan that is not part of the guardian’s authority.
Whether the guardianship is full or limited, the guardian has the right to have to engage in the personal planning process at least annually. Because the personal planning process is intended to be flexible, in the sense that it is responsive to changes in the person’s life or in the panoply of services to the person, the guardian has the right to ask for a personal planning meeting more often than annually. In fact the planning team itself may schedule planning team meetings more often than annually, on a schedule chosen by the team. (See 34-B §5470-B(2)(F))
A guardian may initiate a “review” of the personal plan “when needed or desired”. (34-B MRS 5470 –B(4)) A guardian can identify possible events that might occur in a person’s life (such as certain forms of aggression or a particular health issue that might worsen) in the plan, and if those events occur a plan review must take place. If an event “could lead to the loss of the person’s home, job or program” then a personal plan review is mandatory.
Because a guardian has the right to be at any personal planning meeting, there is implied right that reasonable attempts must be made to schedule personal planning meetings at times when the guardian is available to attend.
Are there ways in which I as a family member or guardian can learn more about the personal planning process?
Yes. The Department of Health and Human Services is required by state law to “prepare and maintain a comprehensive manual” describing the procedures to be followed in the personal planning process. The same law requires the department to “ensure the provision of regular and ongoing training in personal planning to persons with intellectual disabilities or autism and their families, guardians, correspondents, and allies as well as its own staff and providers.” The department must provide informational materials regarding personal planning to families, guardians, and allies.” (See 34-B MRS §5470-B(8))
If you are regularly part of the personal planning process, it is recommended that you obtain a copy of the manual, “Maine’s Person-Centered Planning Process for Persons with Intellectual Disabilities and Autism" (July 2013, updated 2016), and periodically read it over. The more familiar you are with the planning process, its terminology, and its procedures the more likely it is that you will be able to use the planning process to exert beneficial influence on the life of your loved one and leverage the services and supports that are necessary to achieve a high quality of life for the person.
The personal planning process is supposed to identify both the “needs” and the “desires” of the person.
What is the distinction between a “need” and a “desire”?
There is nothing in state law or state regulation that differentiates the two terms. State law is clear that personal planning opportunities “must include all of the needs and desires of that person without respect to whether those desires are reasonably achievable or the needs are presently capable of being addressed”. (See 34-B MRS §5470-B(2)(G) but it does not define either term. The Department has been authorized by law to promulgate regulations governing the personal planning process (See 34-B MRS §5470-B(9)), but no such rules have been promulgated.
The DHHS manual “Maine’s Person-Centered Planning Process for Persons with Intellectual Disabilities and Autism” (Nov. 2016) on page 41 states that
“A NEED is identified by the Person/guardian and the team as something that is required to maintain or improve the Person’s quality of life and that should be met within a specific time frame.”
“A DESIRE is anything else the Person wishes to achieve, have, or obtain that is not a need.”
The planning team’s collective common sense is probably as reliable as anything else in determining the difference between a need and a desire. The classic “desire” that is usually cited in training materials is “a trip to Disney World” but given that such a trip to a sunny location to do fun things could well “improve the Person’s quality of life”, to use the manual’s definition of a “need”, it is easy to see how slippery this distinction between “need” and “desire” can be. The trip to Disney World might be re-characterized as a “need to socialize with persons outside of usual staff and other acquaintances at work or in the residence so as to practice personal interaction skills with a wide variety of people.” The bottom line is that anything that the person or the guardian feels very strongly ought to be met by the system of care probably can and ought to be characterized in some way as a “need”.
The planning team has identified a need or a desire of the person. What happens next?
State law creates a general obligation on the part of DHHS to help meet identified needs (note that here the statute only mentions needs and not desires), within existing resources. The exact language is as follows: “The department shall assist persons with the needs identified by their planning process to obtain housing, employment or other meaningful occupation, medical and other professional therapeutic services, recreational and vocational opportunities and educational services at the earliest possible time, insofar as resources permit.” (See 34-B MRS §5470-B(6)) State law requires that “ongoing personal planning” “must include an action plan that describes the services to be provided, the process of providing the services and who is responsible for overseeing the provision of the services.” (See 34-B MRS§5470-B(3))
What happens if a need or desire has been identified and resources to meet the need are not readily available?
Interim plan. In cases where resources required to address identified needs or desires are not available, state law states: “In cases where resources required to address identified needs or desires are not available, the action plan must identify interim measures based upon available resources that address the needs or desires as nearly possible and identify steps toward meeting the person’s actual identified needs.” (See 34-B MRS §5470-B(3)
Sometimes, when the resources to meet the identified need are readily and quickly available, the need is simply met. However, in a system of care that is rife with waitlists and other forms of shortages, this is a place in the planning process where things can become testy and the friction between the “identification” function of personal planning and the “accountability” function of personal planning is likely to rear its ugly head.
When it becomes apparent that an identified need is not going to be readily or quickly met, the client or guardian should be prepared to ask two basic questions: (1) “What is the action plan for this need?” and (2) “What are the interim steps that will be taken that meet the need (or desire) as nearly as possible?”.
What should be in an action plan and what should I expect for interim steps to be taken?
Other than the statutory language quoted above, there is no statutory or regulatory guidance on what an “action plan” is supposed to include, or what qualifies as an “interim measure”. It is really up to the personal planning team to tailor and craft the interim measures and the action plan to each individual’s situation. State law does require DHHS to “define necessary support services, recommend optimal courses of action and include plans for the active and continued exploration of suitable program or service alternatives based upon the person’s needs” (See 34-B MRS §5470-B(5)) and so there is an obligation on the part of DHHS to help the planning team as it devises action plans and interim steps.
The Person Centered Planning Manual (Nov. 2016) states on page 42 that “A person cannot have an Unmet need for funding or other resources. An Unmet Need can only be a service or a goal that has been identified by the Planning Team as a need.” The Manual is not a regulation and it has no legal authority. Its apparent prohibition against having a need for funding or other resources is not legally enforceable. A need should be described for what it actually is, and not just as a funding source, but if lack of funding is a barrier is to achieving the goal, the action plan should mention that fact and describe what efforts will be made to seek the necessary funding to meet the goal.
For instance, a person living at home with parents may have a need for a residential placement outside the family home. To the degree a barrier to obtaining that goal is a lack of funding for the residential placement, the action plan should at least contain an element that states the need to identify a funding source for the needed residential placement, the steps necessary to obtain that source of funding for the person, and who is going to be responsible for taking those steps.
Thus a residential goal could be described in the plan as a small home-like setting within a certain reasonable radius of the person’s existing support system, with compatible house-mates. The action plan might state “The team will consider all possible funding sources to meet this goal, including waiver funding.” The interim plan might state that the family would like to have reasonable in-the-family-home supports that enable the person to be safe and connected with the community, and that allow other family members to have a decent quality of life.
It should be emphasized that the lack of resources should never be allowed to stifle the creativity of team members as they strive to imagine and then implement what life should be like for the person. State law is clear that personal planning is supposed to “assist and support each person” “in creating a vision for how to live in and be part of the community.” (See 34-B MRS §5001(3-C)) As already mentioned above, needs and desires are to be identified “without respect to whether those desires are reasonably achievable or the needs re presently capable of being addressed.” (See 34-B MRS §5470-B(2)(G)) Team members, especially the guardian and the person, should be free and open in describing the life that they would like to see and the supports they need to obtain that vision of life. Only if that vision is described, and described with as much specificity as is reasonably possible, will there ever be any chance of achieving it.
The client and guardian should in essence emerge from the planning team meeting with what amounts to a road map for how to achieve the stated goal and who is going to do what, exactly, to meet the goal, within stated, measurable, and recorded time frames. That way, if the need (or desire) is still unmet at the next meeting of the personal planning team, the team members can analyze what actions produced results that beneficially impacted the quality of life of the client, and what measures were not done or were ineffective.
There is a qualitative difference between an action plan that (in essence) says “we will do our best to meet the need between now and the next meeting” and a plan that says “person x will do action A, person y will do action B”, with time deadlines given for each action and person. The client and guardian should insist upon the latter.
What if the guardian or the person in services is not satisfied with the personal plan?
First, the plan itself should identify a person to who will review the plan “for monitoring”. (See 34-B MRS 5470-B(2)(F). Dissatisfaction might first be communicated to that person.
Second, the law requires that the planning process itself include within it “a provision for ensuring the satisfaction of that person with the quality of the plan and the supports that the person receives.” (See 34-B MRS §5470-B(2)(H)) As a guardian with the legal right to speak on behalf of the ward in whatever areas in which the Probate Court has granted the guardian authority, the personal plan itself should also contain some mechanism that enables the guardian to “ensure satisfaction” with the plan and the supports the ward receives.
Finally, and in addition, DHHS is required by state law to have a grievance process. (34-B MRS §5604(3)) The grievance process is designed to be open ended, in the sense of what can be grieved. Any “action or inaction” that affects the person’s life can be grieved. The grievance process is also intended to be readily available. A grievance may be submitted in writing or orally. The department must provide a one-page form for the submission of a grievance, and if the grievance is submitted orally, the person receiving the grievance must write up the grievance using the form. (See 34-B MRS §5604(3)(3)(B)) A state regulation (14 CMR 197 Ch. 8) further sets out the grievance procedure and makes clear that any complaint or “dissatisfaction with present services or supports” can be grieved. The regulation states that private guardians may submit grievances, and may authorize someone acting on their behalf, such as an advocate or attorney, to submit a grievance. Mediation may be used to resolve the dispute, and if mediation is used the normal time deadlines in the grievance process are suspended. Informal resolution is also encouraged. Otherwise, the grievance must be resolved by a provider within five business days, or the grievance process starts.
The grievance process has several levels, starting with the person’s case worker, and then moving up the chain of command in DHHS first to the head of the regional office, next to a DHHS hearing officer, and finally to the Commissioner. The DHHS hearing officer can take testimony and will issue a recommended decision for the Commissioner, and the Commissioner may either adopt or reject the hearing officer’s recommended decision.
All of these steps have time lines set out in the grievance regulation, and the failure of someone at one of the steps to meet the timelines can become the subject of a new grievance. All responses to the grievance must be in writing. A person dissatisfied with the final decision of the Commissioner can appeal to Maine Superior Court, but it is unlikely that there will be a new evidentiary hearing at that level.
Suppose existing services are being diminished or terminated and the person or guardian are dissatisfied with that change.
Can we grieve the services cut? What happens to services during the time of the grievance?
Yes, the dissatisfaction with the cut or termination of services can be grieved, and services to the person must continue during the time the grievance is pending at any stage, “unless safety or heath reasons as determined by the person’s physician or planning team, suggest otherwise.” (See 14CMR 197 Ch. 8, §V)