Comment #4 on CMS proposed regs (CMS-2296-P): person-centered planning regs flawed by lack of common sense

Person-centered planning should be the process by which the individual plan of services is developed. The plan of service should reflect the services appropriate to the needs and preferences of the individual including the settings in which services will be delivered. Michigan has used person-centered planning for over a decade, but for some people it has become a charade, a  meeting where the participants go through the motions of developing a plan, only to have the actual plan of services reflect only that which the Community Mental Health agency is willing and able to provide with a heavy reliance on so-called natural supports, all the things that parents and other family members do for the person with a disability to fill in the gaps.

The shortcomings of person-centered plans could be improved by better information for people with disabilities and their families emphasizing the importance of the process and the role they play in its development and better enforcement and monitoring by the state and local agencies to ensure that the process is properly implemented.

The proposed CMS regulations would do nothing to improve the process in Michigan and in many ways would make it worse.

ISSUE #4: The person-centered planning process makes unfounded assumptions, fails to mention legal guardians and families, appears to attempt to regulate unpaid family members and friendly volunteers, and could violate the confidentiality of the person receiving services.
 
Proposed regulations for a person-centered planning process make unsupported assumptions about people with disabilities: that the process will be led by the individual receiving services; that all people receiving services want to lead this process (what this means exactly is not explained) and that all have the capacity to make and communicate reasonable decisions on their own behalf. People with severe and profound developmental disabilities may function at the level of infants or young children and lack the judgment to realize the implications of their decisions if they can make them at all. No mention is made of families or legal guardians as having any place in this process.

Where a legal representative (a guardian or conservator) has been appointed by a court, that person should be recognized as the representative for the individual for all aspects of the individuals care that are covered by a court order.

CMS proposes that the person-centered plan "includes strategies for solving conflict or disagreement with the process, including any conflict of interest concerns."  It is unclear what the purpose of this statement is, but I suspect from recent events in Michigan that one reason it has been proposed is to encourage agencies to challenge the authority of guardians when the guardian is perceived by others to not represent the best interests of the person with a disability. In Michigan, some administrators and advocates have encouraged Community Mental Health agencies to challenge guardianships in court when the guardian (most are parents or other family members) disagrees with what others perceive to be the individual’s needs and preferences.  

Disagreements over agency decisions or the need for services should be handled outside of the person-centered planning process through formal or informal due process procedures including Medicaid hearings. To have them as part of the planning process can lead to intimidation of parent and family guardians and less protection of the individual from bad decisions by the agency that is funding services.

CMS proposes that the plan, “…Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals and the providers of those services and supports....Be signed by all individuals and providers responsible for its implementation." This proposal could easily be interpreted as an attempt by CMS to regulate unpaid services and supports that are provided by family, friends, and volunteers with the mutual agreement of the individual or his or her legal representative. It should be clear that participating in the planning process and voluntarily assisting the person with a disability places no legal obligation to provide unpaid services or responsibility to implement the person’s plan. 

Unpaid family and friends should be supported and encouraged for all they do voluntarily for their disabled family members and friends. They should be recognized for their important contribution to the overall support system for people with disabilities, but they should not be subject to regulation and possibly intimidation by agencies that provide services if they do not meet their “responsibilities” for implementing the plan.

CMS proposes that the Plan of Service must "be distributed to everyone involved...in the plan.” Because plans of service may contain the most intimate details of the care and support of a person with a disability, their distribution to everyone involved in the plan (both paid and unpaid) could be a breach of confidentiality.   

Distribution of the plan, unless it is to service providers under the control of the agency providing funding, should be done only with the written consent of the individual or his or her legal representative.