A VOR committee has read and analyzed the report and sent comments to the NCD. Overall, the report adds to the recent onslaught by some federal agencies and advocacy organizations against guardianship (including family guardians) that tends to dismiss the reality of people with intellectual and developmental disabilities who are unable to make decisions for themselves, in whole or in part. For these individuals the goal of self-determination, as that term is generally understood, is largely unattainable.
VOR, "a Voice Of Reason", represents primarily individuals with severe and profound intellectual disabilities and their families and guardians. VOR advocates that the final determination of what is appropriate depends on the unique abilities and needs of the individual and the desires of the family and guardians for people who cannot make decisions for themselves.
This is the cover letter for the comments on the specific recommendations in the NCD report:
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November 4, 2018
National Council on Disability (NCD)
1331 F Street, NW, Suite 850
Washington, DC 20004
Re: NCD Report, March 22, 2018, “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”
To: Neil Romano, Chairman, Lisa Grubb, Executive Director
For 35 years, VOR has advocated for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD). Our membership is mostly comprised of families of individuals with severe or profound intellectual disabilities, often complicated by significant medical, psychological, or behavioral conditions. Many of our loved ones are non-verbal or non-ambulatory. Many engage in self-injuring behaviors. They often require 24/7 care, provided by well-trained and caring direct support professionals. Our family members constitute a minority within a minority. They represent about 5% of the entire population of individuals with I/DD. The home and community-based settings that work for many people with I/DD often fail to meet the needs of these severely disabled, vulnerable individuals.
VOR has reviewed the March 22, 2018 report “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination”. The consideration of current guardianship law is an important issue upon which to focus. Any recommendations for changes in guardianship policy, however, should recognize that alternatives to court appointed guardianships, even with maximum assistance, are not feasible for everyone. This applies especially to the individuals and their families and friends who we represent.
As stated in the report, 75% of guardians are family members or personal friends. They are the most motivated and in the best position to advocate for the optimum outcome from the decision making process to promote the overall welfare and dignity of the person.
As guardianship alternatives are explored, it is imperative that court appointed guardianship remain an option for those who want or need it. Recognition of the varying needs of different populations who may be subject to guardianship, including people with profound and severe intellectual disabilities, will help ensure that any proposed change to guardianship law gives the appropriate assistance to each person based on individual need.
We welcome your response to our comments and urge you to take them into consideration in NCD deliberations on this important issue.
Sincerely,
Hugo Dwyer
Executive Director, VOR
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VOR Comments Part 2
See also, Guardianship vs. Supported Decision Making
1331 F Street, NW, Suite 850
Washington, DC 20004
Re: NCD Report, March 22, 2018, “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”
To: Neil Romano, Chairman, Lisa Grubb, Executive Director
For 35 years, VOR has advocated for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD). Our membership is mostly comprised of families of individuals with severe or profound intellectual disabilities, often complicated by significant medical, psychological, or behavioral conditions. Many of our loved ones are non-verbal or non-ambulatory. Many engage in self-injuring behaviors. They often require 24/7 care, provided by well-trained and caring direct support professionals. Our family members constitute a minority within a minority. They represent about 5% of the entire population of individuals with I/DD. The home and community-based settings that work for many people with I/DD often fail to meet the needs of these severely disabled, vulnerable individuals.
VOR has reviewed the March 22, 2018 report “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination”. The consideration of current guardianship law is an important issue upon which to focus. Any recommendations for changes in guardianship policy, however, should recognize that alternatives to court appointed guardianships, even with maximum assistance, are not feasible for everyone. This applies especially to the individuals and their families and friends who we represent.
As stated in the report, 75% of guardians are family members or personal friends. They are the most motivated and in the best position to advocate for the optimum outcome from the decision making process to promote the overall welfare and dignity of the person.
As guardianship alternatives are explored, it is imperative that court appointed guardianship remain an option for those who want or need it. Recognition of the varying needs of different populations who may be subject to guardianship, including people with profound and severe intellectual disabilities, will help ensure that any proposed change to guardianship law gives the appropriate assistance to each person based on individual need.
We welcome your response to our comments and urge you to take them into consideration in NCD deliberations on this important issue.
Sincerely,
Hugo Dwyer
Executive Director, VOR
***************************
VOR Comments Part 2
See also, Guardianship vs. Supported Decision Making
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