Saturday, June 30, 2012

Comment #3 (CMS-2249-P2): Guardianship and HCBS Medicaid Waivers

Individual Representatives and Guardianship
In other attempts to change the rules for HCBS waivers by CMS, there was no mention of guardians or an acknowledgement that some people are not able to make decisions for themselves. These proposed rules are better in that they mention a role for guardians. The proposed rules recognize representation through state guardianship laws and other methods:

When an individual is not capable of giving consent, or requires assistance in making decisions regarding his or her care, the individual may be assisted or represented by another person. Section 1915(i)(2) of the Act defines the term “individual's representative” by listing certain examples, but also provides that “* * * any other individual who is authorized to represent the individual” may be included. We believe that “authorized” refers to State rules concerning guardians, legal representatives, power of attorney, or persons of other status recognized under State law or under the policies of the State Medicaid program.

This paragraph, however, is troubling:

States should ensure that the representatives conform to good practice concerning free choice of the individual, and assess for abuse or excessive control. States should also ensure that the person-centered planning process continues to be focused on the individual with HCBS support needs and his or her preferences and goals, and supports are provided so the individual can meaningfully participate and direct the process to the maximum extent possible. We are proposing to provide that the State may not refuse to recognize an authorized representative that the individual chooses, unless the State discovers and can document evidence that the representative is not acting in the best interest of the individual or cannot perform the required functions.

In Michigan, guardianship is under the jurisdiction of the probate court, not the executive branch of state government or the agencies that oversee Medicaid. There have been several attempts to undermine the authority of guardians with proposed guidelines and policy statements from the Michigan Department of Community Health. The MDCH, however, may not usurp the authority of the Probate Court to appoint and monitor guardianships, although anyone can challenge a guardianship in court and ask the probate judge to review it. When a guardian is suspected of neglecting or abusing a ward, he or she may be reported to Adult Protective Services and the probate court. When a Community Mental Health agency has evidence that the guardian is not acting in the best interest of the individual, that issue may also be reported to the court, or the agency may go through appeals processes that are also available to the guardian to establish the appropriateness of services for the individual.

If the agency overseeing Medicaid or the provision of waiver services to the individual were allowed to make judgments about the competence or motives of the guardian, this would be an egregious conflict of interest. Guardians, most of whom are parents, siblings, or other family members, can be the most tenacious defenders of the rights of their family members. In fulfilling their responsibilities as guardians they are in the best position to challenge the decisions of agencies that the guardian feels are not acting in the best interests of their wards. Allowing the agency to make judgments on their role as guardian sets them up for intimidation and undermines their ability to meet their responsibilities as guardians.

This needs to be clarified to make sure that state laws regarding guardianship and the jurisdiction of the courts is respected. Furthermore, guardians are appointed by the court, not chosen by the individual, although in my experience the court does try to determine the preferences of the individual.  Many people are limited in their ability to make these kinds of choices, which is why they need guardianship in the first place.

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