What is GuardianShip?
A guardian is a legally recognized alternate decision maker for a person who is incapacitated. The person with incapacity, for whom the guardianship is set up, is called the ward. “Capacity” and “incapacity” are legal terms which define the boundary between a person’s ability, or not, as the case may be, to make informed, reasoned decisions in important areas of life, such as medical or financial decisions, or whom to marry. A person who is found to be incapacitated cannot make those decisions.
Are there different types of guardianship?
Yes, a guardianship can be full, meaning that the guardian makes all decisions for the ward, or limited, meaning that the guardian can make decisions for the ward only in whatever areas of life that have been authorized and enumerated by the probate court.
Sometimes guardianship is confused with conservatorship, which is basically a guardianship for a person but only for financial matters. A guardian still can make most normal financial decisions for the ward, without obtaining a conservatorship.
What are the powers and duties of a guardian?
A full guardian for an adult incapacitated person has the same power as a parent has over a child, even though the ward is of adult age. (18-A M.R.S. §3-312) For instance a guardian can decide where it is that a ward will live. A limited guardian has the same powers in whatever areas have been designated by the probate court, such as medical or financial.
A guardian is expected to act in the best interests of the ward. A full guardian, or a limited guardian with the power to make medical decisions, may withhold or withdraw life sustaining treatment without a court order, unless the guardian’s decision is made contrary to the advice of the ward’s primary physician, assuming that the ward never left written instructions if the ward ever had capacity.
Note that having a legal power, and being able to exercise that power, are two different things. For instance a guardian may have the legal right to tell the ward where to live, but sometimes trying to enforce that decision on the ward can be difficult. There is no absolute guarantee that other entities in society, such as police, will enforce the guardian’s decision on where the ward will live.
If I become guardian, am I financially liable for the costs of the ward’s care, or the ward’s debts?
No. The probate law states that a guardian is not legally obligated to provide from the guardian’s own funds for the ward, and is not liable to third persons for the acts of the ward. (18-A M.R.S. §5-312(a))
My child has severe disabilities. I have made all the important decisions in her life.
Do I need to become guardian now that she is an adult?
Yes, if you want the legal authority to continue to make similar important decisions on her behalf. The law presumes that anyone over eighteen years of age is competent to make decisions on their own. Even though the adult child’s disabilities are obvious to everyone, and even though you have been acting as decision maker in your child’s life, you need the authority granted by a probate court to continue in that role.
How do I become a guardian?
A guardianship begins with the filing of a petition for appointment of a guardian for an incapacitated person in the probate court of the county in which the proposed ward lives. That petition is on a form provided by the probate court called a PP-201. You also have to file a form PP-502, which sets out the plan you devise to make sure that that ward’s needs are met. The third form that has to be filled out is on PP-505. That form is filled out by a physician or psychologist. The forms are available at any county probate court for a small fee. Many forms are available on line. Clerks of probate courts can be quite helpful in giving information about the guardianship process but they refuse to give legal advice.
The proposed ward must be given notice of the hearing, and may attend the hearing. The hearing itself may be in the courtroom but some probate judges do conduct the hearing in chambers, depending on the circumstances of the case.
Hiring an attorney is not absolutely necessary if you are comfortable filling out forms and presenting your case to the judge. The probate judge may appoint a visitor or guardian-ad-litem (who is like a visitor but who is an attorney) to interview the proposed ward and investigate the circumstances of the proposed guardianship and report back to the court in writing. (18-A M.R.S. §5-407(b-1)) If the proposed ward is likely to contest the guardianship, or if someone else (like an ex-spouse) is also vying to be appointed guardian then it is probably better to have the help and advice of an attorney.
how do I choose between full and limited guardianship?
It really depends upon the individual’s circumstances. The probate court is required to encourage the development of maximum self-reliance and independence of the ward and to issue protective orders that are tailored to the ward’s actual mental and adaptive limitations. (18-A M.R.S. §5-408) So full guardianship should not necessarily be assumed. Consistent with the principle of using the least restrictive appropriate alternative, a petitioner for guardianship should try to preserve areas of decision making for the ward if the ward has demonstrated some competence in those areas.
I am a guardian for my adult child, but I will not live forever.
What should I do to help make sure there is a guardian after I am no longer around?
The parent of an incapacitated person may by his or her will appoint a guardian. (18-A M.R.S. §5-301) The new guardian designated in the will has to file an acceptance of the appointment in the court where the parent’s will is probated, after giving seven days written notice to the ward and to the person who is taking care of the ward or the ward’s nearest adult relative. If someone files an objection, then the appointment by will is terminated and the court will decide who becomes the new guardian.
That is the legal side of things. This is really a family matter. If you can, identify a person within the family or someone you trust who is willing to be nominated in your will. Then if possible start the process of having the person become acquainted with the needs and desires of the ward, and the special issues that might arise in the ward’s life.
Can I temporarily delegate my guardianship authority to someone else?
Yes. A guardian can delegate any power except the authority to consent to a marriage, for up to twelve months, by a properly executed power of attorney. The power of attorney has to be filed with the probate court. (18-A M.R.S. §5-104)
Where can I learn more about guardianship?
Yes. The Maine Department of Health and Human Services, Office of Aging and Disability Services has a web site about guardianship that is available. It provides useful information, and a “Guardianship Guide”, much of which is about possible alternatives to guardianship.
Transitioning from Children’s Services to Adult Services
My child is nearing adulthood. How do I find out if she is eligible for services for persons with intellectual disabilities or autism?
First you have to contact the regional office of the part of Maine DHHS that provides services to persons with intellectual disabilities or autism. Ask for the intake coordinator. There is a written application that has to be filled out, and the intake coordinator’s job is to either fill out the application or to help you do it. The decision on eligibility is supposed to be made within 90 days of submitting the application, but it is possible for the process to take longer. (34-B M.R.S. §§5467-5469)
The application has been filled out and submitted. What happens next?
The intake coordinator and the intake coordinator’s supervisor look at the information. For persons with intellectual disability, they are interested in IQ test scores and functional test scores. (14-197 C.M.R. Chapter 3, §3.1) Usually the IQ test is a WAIS, the Wechsler Adult Intelligence Scale. The functional test is usually a VABS, the Vineland Adaptive Behavior Scale. The Vineland tests the applicant’s abilities in daily living skills. The WAIS and the Vineland are the most commonly used tests in Maine, but there are other tests that are sometimes used. The results of both tests must be found by DHHS to be two standard deviations below the mean—in numerical terms, 70 or less. If one test is higher and the other is lower than 70 the person will be found ineligible.
Sometimes it is very clear from the outset that the applicant has a score -- or several scores, because IQ testing and functional testing are often done at least several times in the course of growing up and being in special education—and the person has scores below 70 and is eligible. Occasionally no test scores can be found. Other times the scores will straddle 70, because neither IQ testing nor functional testing is an exact science and a person’s performance may differ from time to time due to other factors. If no recent reliable test scores can be found, or if there is a history of scores straddling 70, or if there is some reason to believe that scores are “artificially” low, such as testing affected by poor vision or hearing, then DHHS will arrange for a testing by a person it chooses. Under state law the testing is supposed to be “comprehensive”. After reviewing the test results of the chosen tester, the regional office will make a decision and let the applicant know in writing.
For persons seeking services because of autism, as opposed to intellectual disability, the process is the same except that instead of requiring an IQ test below 70 the applicant must have functional test scores below 70 and a reliable diagnosis of the person being on the autism spectrum. (14-197 C.M.R. Chapter 3, §3.2) Historically this meant a diagnosis such as PDD-NOS (pervasive developmental disorder, not otherwise specified) or Asperger’s, but the most recent version of the Diagnostic and Statistical Manual of Mental Disorders, DSM V (2013) now incorporates those into the broad rubric of “autistic spectrum disorder.
Can I appeal a determination that my child is not eligible?
Yes, if you have authority, such as guardianship authority, to make the appeal. (14-197 C.M.R. Chapter 3, §3.3) If you are not guardian, and the applicant is over eighteen years of age, then the applicant must appeal. The appeal must be in writing and it is very important not to miss the appeal time deadline, because once that passes DHHS will consider the matter final. Even if new evidence emerges later, indicating eligibility, DHHS may refuse to take it into account.
If you get a letter saying your MaineCare Service will be reduced or taken away, and you do not agree with the decision, you have a right to appeal. You might appeal if the decision affects your health or safety, or if it means you will not receive services that are in your Person Centered Plan. You need to appeal within 10 days after you get the letter. If you do this your services will stay the same until the Appeal is decided.
What happens in the appeal process?
There is a hearing in front of a hearing officer. The person in the regional office, usually the supervisor, explains why it was that the person was found ineligible. The person, family members, and others can testify as to why they believe the person is eligible. The hearing officer makes a recommended decision to the commissioner of DHHS and the commissioner makes the final decision. The commissioner’s decision can be appealed to Superior Court but deference is given to the commissioner and no new testimony is taken in court
Grievance procedures: if I do not agree with the services we are getting can we file a grievance?
First we recommend you speak to your case manager. If you still are in disagreement with the services being offered you can file a grievance following the rules available through this website and utilizing this form. Your case manager or an Advocate can give you the rules and help you file your grievance.
Can I get help in the application and hearing process?
Yes, state law provides that an applicant is entitled to the services of an advocate throughout the application process. (34-B M.R.S. §5466) That includes any hearing. This is a very specialized area of the law and most attorneys are not familiar with the details of IQ and functional tests.
What is “the waiver” and why is it important?
The “waiver” is the name given to a funding stream for persons with intellectual disability or autism. It is important because it is the major funding stream for persons with severe developmental disabilities. It is funded with two-thirds federal dollars and one-third state dollars.
For persons with intellectual disability or autism, there are really two waivers. One, known also as “the big waiver” or “the comprehensive waiver” provides funding for a full panoply of services, including staffed residential care, work supports or day program support, and other treatment services. That waiver is called the Section 21 waiver.
The other waiver is called the Section 29 waiver. It does not provide comprehensive services, and in particular it does not provide any residential services. It only provides day program or work support services outside the person’s residence.
The Section 21 and Section 29 waivers get their names from the MaineCare Benefits Manual. (10-144 C.M.R. Ch. 101; see Section 21 and Section 29) “MaineCare” is what Maine calls Medicaid. Section 21 of the MaineCare manual describes eligibility procedures and benefits for the comprehensive waiver and Section 29 of the manual describes work or day program supports. Section 29 came about as an alternative to Section 21. Section 29 is much cheaper to fund than Section 21 and in many cases is viewed as a stopgap measure until such time as the person can receive Section 21 services.
What is waived in the waiver?
In the late 1960s the Congress was very concerned about the poor quality of institutional care in the United States for persons with intellectual disabilities or autism. At that time almost all care was provided in state run institutions, and conditions in those institutions were abysmal. Maine’s Pineland was no exception.
In order to improve care, the federal government created a right for persons with intellectual disability or autism to receive nursing-level care. The federal government was willing to pay for two-thirds of the cost of that care, but along with the federal money came stringent regulations defining the level of care that persons who received the money had to receive. As a result many millions of dollars went into improving the level of care for persons with intellectual disabilities and autism in the United States. However the regulations created ICFs-MR, Intermediate Care Facilities for Persons with Mental Retardation (now known as ICFs-IID, ICFs for individuals with intellectual disabilities). These ICFs were in essence mini-institutions.
By the early 1980s many states, including Maine, were lowering the census of their state institutions by moving inmates to group homes in the community. Because group homes were less restrictive residential settings than ICFs, and usually less expensive as well, representatives of the states and the federal government recognized the mutual benefit of using this funding stream not just for ICFs but also for community placements. The states each had to submit comprehensive applications to the federal government, which would review the plans to insure that persons served would still have minimum standards of care. But the federal government would “waive” the ICF regulations and still be responsible for two-thirds of the cost of care.
How does a person become eligible for the waiver?
First, the person has to be found eligible for nursing home care. (10-144 C.M.R. Ch. 101 §21.03-4) DHHS hires someone, almost always a nurse, to do an assessment of the person. If the person’s disabilities are such that the person cannot survive without significant supports, the person is found eligible for nursing care.
However that nursing assessment is only the beginning. The person must apply for the waiver. Almost always the person’s case worker does the application and submits it to DHHS. It is important to use the person centered planning process to identify the need to make the waiver application. That way there is a written record of the assignment of the responsibility to make the application.
If only work supports are needed – usually this is when the person lives at home and does not desire to move—then only a Section 29 application is submitted. If both residential services and work supports are needed by the person, then applications should be made for both Section 21 and a Section 29.
Are there waitlists for Section 21 and Section 29 services?
Yes there are, and they have grown exponentially over the past several years. At the end of November, 2013, there were 853 people on the Section 21 waitlist, and 465 people on the Section 29 waitlist. As of the same date there were 280 people on both waitlists. There were 478 people receiving Section 29 services who are on the waitlist for Section 21 services.
How does a person get off the waitlist and into the receipt of actual services?
The Section 29 waitlist is purely chronological—first come, first served. (10-144 Chapter 101 §29.03-4) That is why it is important to apply as soon as possible. The Section 21 waitlist is much more complicated.
Section 21 of the MaineCare manual provides that DHHS can divide the Section 21 waitlist into three categories. (10-144 C.M.R. Ch. 101 §21.03 (A), (B), and (C)) These categories are in essence based upon acuity of need.
- Priority one is for people who have been determined to be in immediate adult protective danger. As of the end of November 2013 there were 75 people in priority one.
- Priority two is for people who are at risk of abuse if the Section 21 services are not provided, but the risk is not immediate.
- Priority three is for persons who are not at risk for abuse.
For several years up until this writing (January 2014) only persons in the priority one category have ever been selected to come off the Section 21 waitlist and into services. The decision about who is chosen within the priority one category is totally within the discretion of DHHS. (10-144 C.M.R. Ch. 101 §21.03-6) Because of the need to keep confidentiality, no one outside of a handful of persons within DHHS knows why a certain person within category one is chosen to come off the waitlist and others who are also at immediate risk remain on the waitlist. It is a closed system not open to any scrutiny.
Is there anything I can do to increase the chances of my loved one being chosen to receive the Section 21 waiver?
If the person in whom you are interested is in category two or category three, you can try to appeal the designation to get the person into category one. It is crucial, even if the person is already in category one, to report all reportable events and make sure that they are being recorded in the EIS (“Enterprise Information System”). The EIS is the name of the computerized data system for keeping track of information that DHHS has for persons with intellectual disability or autism.
There is a state regulation (14-197 C.M.R. Ch. 12 §603(C)(2)(a) and (b)) that governs what must be reported. Although no one in the general public knows exactly what information is used to determine the degree of risk to which any priority one waitlist client is exposed, it is known that reportable events are reviewed both for number, type, and acuity of risk presented. Therefore each and every reportable event that qualifies as a reportable event under the regulation should be recorded in the EIS. The person’s case worker can enter information into the EIS, and if that fails there are persons within each regional office who enter data, including reportable events, into each person’s record.
The personal planning process can be used as a forum to insure that reportable events under the regulation are actually entered into the EIS. The written report of the personal plan should specify who exactly will be held accountable for entry of reportable events, or transmission of information to the department so that the information can be entered.
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)
Special or Unique Communication Needs of a Person
How should the personal planning process address special communication needs?
All unmet needs in a person’s life are important to identify in the personal planning process but communication needs are particularly critical. It may be that a person is able to communicate needs, wants, and desires adequately on his or her own, without additional supports, in which case it is not so crucial to specifically address any communication issues in the personal planning process. However many people with intellectual disabilities or autism face additional challenges communicating their wants and needs, and in those cases it is of the utmost importance to identify and address barriers to communication in the personal planning process.
do Communication barriers play a role in generating unwanted or adverse behaviors?
It has long been known that all persons at whatever level they happen to function in their daily lives strive to communicate in one way or another with the other people who are in their lives. If the ability to communicate is thwarted, or limited so that the so-called “normal” ways of communicating through voice or gesture do not suffice to communicate wants or needs, the person will find other ways to communicate.
There is a direct correlation between the inability of a person to convey his or her discomfort, pain, annoyance, exasperation, boredom, and other similar dissatisfactions with life in the person’s present moment, and “adverse” behaviors exhibited by the person. Thus in any case in which a planning team is addressing adverse behaviors and where communication barriers may be present or are suspected to be present, the team should be asking: “What, if anything, is the person trying to communicate by exhibiting the identified adverse behavior?”
In attempting to answer this question, the team should listen carefully to the direct care workers who are providing care to the person, because these workers often have insights based upon their observations that can be key to identifying triggers to the adverse behavior. They can also be extremely perceptive in picking up seemingly minor changes, such as in the person’s facial expression or mood, that are precursors to the target adverse behavior. Also unless a professional evaluation has previously been done in the recent past, the team should identify as a need a communication evaluation, specific to the person, by a professional. There have been many advances in computer assisted communication technology for persons with developmental disabilities and a competent professional may be able to suggest a system that would substantially increase the person’s ability to communicate.
In combination the professional evaluation and the input from direct care staff can give the planning team ideas and direction in terms of making alterations in the person’s environment, or for the provision of additional training for staff in the person’s idiosyncratic style of communication, that when implemented eliminate or decrease the person’s adverse behavior.
Are there special rights for persons who are both deaf or hard of hearing, and also have intellectual disabilities or autism?
Yes, Maine law does contain provisions that entitle persons who are deaf or hard of hearing and who also have intellectual disabilities or autism to special services. These services must include, but are not limited to, appropriate assessments, interpreter services in American Sign Language, training for direct service staff in American Sign Language and deaf culture, specific residential options for persons who are deaf or hard of hearing, the placement of telecommunication devices in residences and places of employment or other community-based services, and support for the person’s family. (34-B MRS §1218(2)) Each regional office within the Department of Health and Human Services must have at least one person who is proficient in American Sign Language and each regional office must identify a person who is responsible for the coordination of deaf services in that region. The personal planning team should identify any needs that a person may have in these areas and work with the regional office designee to insure that these needs are met.