The NCD admits from the outset that there is a lack of reliable and comprehensive data on guardianship that makes it impossible to know for sure whether systemic reforms are necessary. This caveat, however, does not prevent the NCD from making recommendations for reform. Part 3 of The DD News Blog comments on the report will cover more information about the NCD and the philosophical underpinnings of the movement to replace guardianship with Supported Decision Making and other alternatives.
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VOR Comments on the Seven Findings of “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”
Finding 1: There is a lack of data on existing guardianships and newly filed guardianship.
VOR agrees with this finding and the recommendation to “develop initiatives to produce effective and comprehensive data on guardianship”. We recommend that data should also be collected on the welfare of persons who have been removed from the protections of court-ordered guardianship.
This finding supports a conclusion that without more reliable and complete data on guardianship, it is not possible to determine whether systemic reforms are needed. Evidence is also lacking that would support the limiting of guardianship or the wholesale replacement of guardianship with Supported Decision-Making or similar alternatives.
Finding 2: People with disabilities are widely (and erroneously) seen as less capable of making autonomous decisions…
VOR disagrees with the above statement, especially the word, “erroneously”. It may be true that some people with disabilities are incorrectly assumed to be unable to make autonomous decisions. Others, especially those with profound and severe intellectual disabilities and other complex medical and behavioral conditions, are indeed incapable of making decisions for themselves in some or all aspects of their lives. When necessary, they should be afforded the due process protections of guardianship to assure that their interests and rights are protected.
In recommending that the DOJ [U.S. Department of Justice] should issue guidance to states on their legal obligations under the ADA [Americans with Disabilities Act] in regards to guardianship, it is not clear what the NCD has in mind or how much control the federal DOJ has over state court-appointed guardianships. Unfortunately, the ADA and the 1999 Supreme Court Olmstead decision interpreting the federal anti-discrimination law have been widely misinterpreted to require that services be provided in the “community”. They have been incorrectly used to limit the choices and range of services available to people with I/DD.
Guardianship may be inappropriate for some people with disabilities, but a finding that an individual lacks the capacity to make informed decisions and needs the protection of guardianship is not in itself discrimination.
Olmstead does not address guardianship or other forms of surrogate decision-making. The 2014 Home and Community-Based Settings Rule, however, confirms the authority of state courts to appoint guardians to represent people with disabilities: “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].
The recommendation that DD Councils, Universities of Excellence in Developmental Disabilities, and Protection and Advocacy organizations should work to avoid guardianship ignores the recognition of individual needs, including the possible need for court appointed guardianship.
Finding 3: People with disabilities are often denied due process in guardianship proceedings.
VOR believes that the vast majority of Probate Courts and state guardianship laws assure due process when properly enforced. We would appreciate any information on courts that do not adhere to this standard.
Finding 4: Capacity determinations often lack a sufficient scientific or evidentiary basis.
VOR believes that this finding is a broad generalization and is not accurate. Requests for guardianship usually include statements from qualified physicians along with other information on the functioning abilities of the individual and recommendations on the need for guardianship. Recommendations and observations by parents and other family caregivers as to the functioning abilities of the individual should be included in assessments for guardianship.
Finding 5: Guardianship is considered protective, but courts often fail to protect individuals.
VOR believes this statement is overly broad and subjective. Most states require reports from guardians on the condition of the person under guardianship, and many require additional oversight of guardianship cases.
We agree with the recommendation for appropriate levels of oversight and regulation of professional and public guardians.
Finding 6: Most state statutes require consideration of less-restrictive alternatives, but courts and others in the guardianship system often do little to enforce this requirement.
VOR believes that for people who can make decisions for themselves, less restrictive alternatives to guardianship should be available, based on the needs and desires of the individual. The recommendation to “use SDM [Supported Decision-Making] and the court systems to restore people’s rights”, even for people with severe intellectual disabilities, is questionable. Restoration of rights must consider the capacity of the individual to make decisions in some or all aspects of the person’s life and whether guardianship is needed to ensure a person’s safety, health, and general well-being. SDM has not been proven to be an effective method to replace guardianship and could instead place the person in harm’s ways.
Finding 7: Every state has a process for restoration, but this process is rarely used and can be complex, confusing, and cost-prohibitive.
VOR believes that this finding may or may not be true, given that, “Data on restorations is seriously lacking, making it impossible to tell how many individuals are in unnecessary guardianship…”[page 167 of the Report]. There must be recognition that ending guardianship for some people may be fraught with unintended and harmful consequences. For an individual who has undergone rigorous assessments on his/her ability to make decisions, and has been found unable to do so, assessments would either have to show that the initial assessment was incorrect or that changes in the person’s decision-making abilities no longer support a need for guardianship.
For the most part, the federal Protection and Advocacy system opposes guardianship on an ideological basis rather than following its mandate to consider and protect the rights of individuals with developmental disabilities. We believe that to encourage P&A organizations to continue on this path with extra funding to remove individuals from guardianship would be a poor use of federal funds.
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VOR Comments Part 1
Olmstead Resources
Celebrating the 17th Anniversiary of the Olmstead Decision: Opportunities and Choices
Guardianship vs. Supported Decision Making
