The proposed law embraces a controversial movement that has emerged in recent years to limit the use of guardianship and to replace it with alternatives to “substitute” decision making. Substitute decision-making occurs when a person lacks the capacity to make or communicate decisions on their own behalf, in some or all aspects of their lives, and a guardian is appointed by a state court with authority to make those decisions. Supported Decision-Making (SDM) for individuals with intellectual and developmental disabilities (I/DD) and other disabilities, promotes the idea that an informal network of advisors should be made available to the individual for support and that guardianship should be avoided at all costs. Proponents of SDM believe that all persons with disabilities, with almost no exceptions, have the ability to make decisions for themselves when given the support they need to do so.
[Read more about the Uniform Law Commission and Guardianship vs. Supported Decision-Making. Here is the draft of the proposed guardianship law.]
VOR, a national non-profit organization advocating for high quality care and human rights for people with intellectual and developmental disabilities, has submitted comments to the ULC committee on guardianship. The comments are the work of the VOR Issues Oversight Committee of which I am a member.
The Comments consist of a letter to David English, the chair of the ULC guardianship committee (Part 1) followed by specific comments on the text of the draft model guardianship law (Part 2).
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Dear Mr. English:
VOR is a national advocacy organization working to protect high quality care and the human rights of all individuals with intellectual and developmental disabilities (I/DD). We support a full range of services and residential options to meet the needs of this diverse population.
Letter to David English, the chair of the Committee on Guardianship, Conservatorship, and Other Protective Arrangements Act
Dear Mr. English:
VOR is a national advocacy organization working to protect high quality care and the human rights of all individuals with intellectual and developmental disabilities (I/DD). We support a full range of services and residential options to meet the needs of this diverse population.
VOR’s membership consists of family members and guardians of individuals with intellectual and developmental disabilities (I/DD). We understand the importance of families and guardians in helping to ensure that individuals with I/DD have choices available to them that optimize needed services and supports and honor their unique personhood.
VOR has a responsibility to its members to advocate for guardianship policies and procedures that protect the health and safety of people with I/DD and respect their civil rights. We understand that the ULC Committee on Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act, chaired by David M. English, JD, is finalizing its model act. We also understand that, Uniform Acts are model statutes produced by nongovernmental bodies that may become law if they are independently adopted, in whole or in part, by state legislatures. Because of the potentially broad affect of this Act on guardianship policy, VOR is concerned with some of the proposed changes.
Specifically, we are concerned with changes that would incorporate the principles of “Supported Decision-Making” (SDM) into guardianship law and promote its use as a substitute for guardianship. SDM, as it is promoted by organizations that receive funding from the federal Administration for Community Living, is based on a belief that everyone with a disability can make his or her own decisions with almost no exceptions. Our families know better from their experiences of living with disabled family members who have complex cognitive, physical, and behavioral disabilities. Some function at the level of infants or young children or have intellectual and behavioral disabilities that prevent them from understanding the ramifications of their decisions. Although some people with less severe intellectual disabilities may find that SDM gives them the tools they need to make decisions, there are others who do not recognize or appreciate risky or dangerous situations and need guardianship to prevent them from being harmed by the consequences of their decisions.
Although SDM is meant to be an alternative to substitute decision-making, we believe that SDM is another form of substitute decision making, but without the accountability of guardianship. These concerns are outlined in VOR’s attached Position Paper on Guardianship and Supported Decision-making.
We are providing comments on the “Guardianship, Conservatorship, and Other Protective Arrangements Act.” VOR members who serve as guardians for their intellectually disabled family members consider guardianship to be an honor, a privilege, and a labor of love. Our members are representative of the people who must live up to and implement the standards and policies of this proposed model law, and as such, our input is crucial to help ensure that the model legislation reflects the real world demands and needs of individuals with intellectual disabilities in relation to guardianship. We welcome your sincere consideration of our comments and look forward to your response.
Sincerely,
Caroline Lahrmann
VOR President
Specifically, we are concerned with changes that would incorporate the principles of “Supported Decision-Making” (SDM) into guardianship law and promote its use as a substitute for guardianship. SDM, as it is promoted by organizations that receive funding from the federal Administration for Community Living, is based on a belief that everyone with a disability can make his or her own decisions with almost no exceptions. Our families know better from their experiences of living with disabled family members who have complex cognitive, physical, and behavioral disabilities. Some function at the level of infants or young children or have intellectual and behavioral disabilities that prevent them from understanding the ramifications of their decisions. Although some people with less severe intellectual disabilities may find that SDM gives them the tools they need to make decisions, there are others who do not recognize or appreciate risky or dangerous situations and need guardianship to prevent them from being harmed by the consequences of their decisions.
Although SDM is meant to be an alternative to substitute decision-making, we believe that SDM is another form of substitute decision making, but without the accountability of guardianship. These concerns are outlined in VOR’s attached Position Paper on Guardianship and Supported Decision-making.
We are providing comments on the “Guardianship, Conservatorship, and Other Protective Arrangements Act.” VOR members who serve as guardians for their intellectually disabled family members consider guardianship to be an honor, a privilege, and a labor of love. Our members are representative of the people who must live up to and implement the standards and policies of this proposed model law, and as such, our input is crucial to help ensure that the model legislation reflects the real world demands and needs of individuals with intellectual disabilities in relation to guardianship. We welcome your sincere consideration of our comments and look forward to your response.
Sincerely,
Caroline Lahrmann
VOR President
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