The following are comments I made to the National Council on Disability (NCD) during a panel discussion on guardianship and Supported Decision Making on 2/11/16.
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My name is Jill Barker and I am from Ann Arbor, Michigan. I have two adult sons who have profound physical and intellectual disabilities. Danny is 39 years old and Ian is 31 years old. They both function at about the level of a six-month old infant, and are totally dependent on other people for their care and well being. My husband and I are their plenary co-guardians which gives us the tools we need to assure that their rights are protected, that they receive the services they need, and that they are treated with dignity and respect. We monitor their care, participate in decisions affecting them, and intervene when their interests are being neglected or ignored.
I have read a great deal about Supported Decision Making. The core belief espoused by its advocates is that all people with developmental and intellectual disabilities must be presumed to be capable of making decisions for themselves. What is rarely acknowledged is that there must also be a mechanism to overcome this presumption when there is evidence that a person is unable to make or communicate decisions in some or all aspects of their lives. This lack of capacity is likely to put the person at substantial risk of neglect, abuse, or exploitation. Guardianship is designed to be that mechanism.
I would also add that people with severe or profound disabilities who lack the capacity to make decisions and do not have a guardian or other legal representative to protect them, are likely to be at the mercy of public agencies that are strapped for cash and are focused on reducing the cost and number of services they provide to people with DD.
Many advocates for SDM state explicitly that their goal is to eliminate guardianship. Others state that this is not what they are trying to do, but their words and actions show that they intend to make guardianship as difficult to obtain as possible. Advocacy organizations espousing SDM are also poised to obtain funding from federal agencies to promote Supported Decision Making and as such are in a poor position to claim that their only interests are the rights of people with disabilities.
In Virginia and Missouri, there have been recommendations to make Supported Decision Making a part of their guardianship laws and to make it mandatory for a guardian to espouse the belief that their family member is capable of making decisions, even when a court of law has determined otherwise. This is an outrageous imposition on people with disabilities and their families.
If Supported Decision Making training is found to be valuable by individuals and families, then, by all means, they should have access to it, but this should be strictly voluntary. When an individual or guardian is involved in a supported decision making process, it should be made clear from the outset that all decisions are ultimately up to the individual and family, or a court-appointed guardian, when there is one. In any federally-funded program there should also be protections in place to protect the privacy of the individual, prevent coercion from having choices imposed on the individual, and to prevent unwanted intrusion into their personal lives.
Thank your for your consideration of my comments.
2 comments:
In yearly planning meetings for my sister's care, the language of the state forms would lead one to believe that my sister answered the questions herself. In reality, while I, as Guardian was present, the state worker and group home and day program staff presumed to answer many of the questions for her. They did include her in the discussions that she is capable of understanding. I could tell from their answers to questions on the forms (ones she could not understand) that they answered with what they believed to be in her best interests, as far as what her group home can provide.
It is a subtle shift at this point in time. I fear the gap between their answers and my sister's real needs will grow over time. Funding decreases and greater power over uses of funds by the private group home companies will put pressure on DD professionals to shortchange the clients.
Nothing has changed, even with the new HCBS rule, that affects the authority of guardians to make decisions for their wards to the extent authorized by a court.
Make sure you have copies of your sister's records (your right as a guardian) that indicate questions that were asked of her and what was written down as her response. If providers or caregivers are answering for your sister where, in your judgment, she herself does not have the capacity to understand or respond reasonably, as her guardian you can correct the record. Point out these areas and provide your answers that better reflect your sisters needs rather than what the group home can provide. This should be done in writing (either e-mail, fax, letter, or other) with copies to the provider and whatever agency is responsible for funding her group home and other services. Be sure to keep a copy for yourself. If someone objects, tell them you are fulfilling your legal obligation as a guardian.
Thank you for your comment. You're right. This subtle shift is happening everywhere. It is potentially very damaging for our loved ones.
Good Luck!
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