The federal Home and Community Based settings rule places the individual with a disability at the center of a Person Centered Planning process. This is as it should be, allowing for the reality that many people with intellectual and developmental disabilities are limited in their ability to make or communicate decisions for themselves or to exercise their rights on their own behalf and for whom legal guardianship may be necessary. With my own sons, who have profound physical and intellectual disabilities this is certainly the case. Were my husband and I not able to represent their interests through the authority that we have as legal guardians, they would be continually at the mercy of whomever was in control of a particular situation - group home staff, a community mental health agency, the provider agency that staffs the group home, medical personnel, etc. We include in this group some disability advocates who claim to know our sons needs better than we do. Some even claim that it is possible to interpret our sons' facial expressions and body language as intentional communication that confirms the advocates’ notion of what choices are best for them.
Most guardians of people with developmental disabilities are parents, siblings, or family friends of the person with DD. They are not perfect and they make mistakes as often as the next person. The difference between family members and friends and all other acquaintances, professionals, and advocates who wish to weigh in on how other people should live their lives is that when things go wrong family and friends feel it personally and are usually quick to react in ways that make things better. Others who are not so personally connected may not be around to suffer the consequences of their own and other peoples mistakes. They also have their own interests to think about, a perfectly human trait that does not necessarily make them bad people. People who know our sons and care about them are often invaluable to us in making informed decisions for our sons.
Guardianship for people with DD in Michigan is under the jurisdiction of state probate courts that are required to follow state law. Built into state law are numerous protections for the individual and procedures designed to assure the accountability of guardians. Here is a the Washtenaw Trial Court Website on guardianship with links to pertinent sections of the the Michigan Mental Health Code.
The HCB settings rule confirms the authority of court-appointed legal guardians to make decisions authorized by state courts. People with disabilities who do not have legal guardians may chose someone to represent them in the person centered planning process: “In §441.671, we proposed to define the term ‘individual’s representative’ to encompass any party who is authorized to represent the individual for the purpose of making personal or health care decisions, either under state law or under the policies of the State Medicaid agency. We did not propose to regulate the relationship between an individual enrolled in the State plan HCBS benefit and his or her authorized representative, but noted that states should have policies to assess for abuse or excessive control and ensure that representatives conform to applicable state requirements.” [p. 2994 of the Federal Register of 1/16/2014; Definition of Individual’s Representative] [emphasis added]
In addition, is this comment on the authority of legal guardians: “We note that where a legal guardian, conservator, or other person has the sole authority under state law to make decisions related to the individual’s care, the state must comply with the decisions of the legal surrogate.” [p. 2995 of the Federal Register of 1/16/2014; Definition of Individual’s Representative][emphasis added]
Furthermore, under §441.740 of the final rule on Self-Directed Services (or Self-Determination as it is known in Michigan), the rule states that, “the state may choose to offer an election for self-directing HCBS. The term ‘self-directed’ means…services that are planned and purchased under the directions and control of the individual, including the amount, duration, scope, provider, and location of the HCBS. For purposes of this paragraph, individual means the individual and, if applicable, the individual’s representative as defined in § 441.735.” [p.3038 of the Federal Register of 1/16/2014, § 441.740 Self-directed services] [emphasis added]
In other words, state Medicaid agencies may have policies to regulate the qualifications of someone who has been chosen by the individual as a representative, but the qualifications of court-appointed guardians and the monitoring of their conduct remains under the jurisdiction of state courts, not the state Medicaid agency.
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