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UN: People With Disabilities Free To Make Own Decisions

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A United Nations committee has issued new guidelines urging countries to recognize the importance of supported decision-making for people with disabilities. (UN/Jean-Marc Ferré)

A United Nations committee has issued new guidelines urging countries to recognize the importance of supported decision-making for people with disabilities. (UN/Jean-Marc Ferré)

People with even the most severe disabilities have the right to make their own decisions, no matter if their choices are risky or ultimately turn out to be mistakes, a United Nations panel says in new guidelines to nations.

The comments come from the U.N. Committee on the Rights of Persons with Disabilities — an 18-member group charged with monitoring the implementation of the Convention on the Rights of Persons with Disabilities — in a statement Tuesday designed to dispel misunderstandings about the international treaty.

Under the convention, nations commit to “recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.”

In practice, however, many people with disabilities around the world are denied fundamental rights including the opportunity to vote, marry and start a family based solely on their level of mental capacity, the U.N. committee said.

Rather than make choices on behalf of those with special needs, the panel clarifies in its new guidelines that the convention calls on nations to recognize the importance of supported decision-making where individuals are aided in fulfilling their own wishes.

In cases where it’s not reasonable to know what an individual wants, decisions should be based on the “best interpretation of their will and preference,” the committee said.

“Respect for the freedom to make choices should be accorded to all persons with disabilities, no matter how much support they need,” said Theresia Degener, a member of the Committee on the Rights of Persons with Disabilities. “People with disabilities, including those with psychosocial or cognitive impairments, must be supported in making decisions, and not have decisions made for them, even when it is thought to be in their ‘best interests.'”

At present, 145 countries have ratified the Convention on the Rights of Persons with Disabilities, which calls for greater community access and a better standard of living for people with disabilities around the world. The United States signed the treaty in 2009, but efforts to ratify it have so far been unsuccessful.

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Comments (18 Responses)

  1. Dadvocate says:

    So intellectually capable people with disabilities and like minded advocates believe that collateral damage in the form of death, violence, and abuse of all types directed at people with severe intellectual disabilities is a completely acceptable price to pay to achieve their ideological goals? That’s what I thought they’d been saying but I guess now they’re making it official. They apparently hate the sensible, time tested legal concept of guardianship and here is the evidence. Rather the State and strangers without accountability have control than the severely impacted individual and their family or legally appointed guardian. This is really offensive.

    The related pronouncements and initiatives from our own HHS and DOJ state is that they think that people with disabilities and their guardians should absolutely have freedom of choice in terms of housing employment and services UNLESS those choices conflict with their narrow nonsensical definition of “community” and absurdly broad definition of what constitutes an “institution.”

    The attempts these ideologues are making to move far beyond sensible legal protections to codify their narrow preferences for human behavior (rather than relying on education to promote change) is wrong. HHS and DOJ and these 18 individuals should redirect their efforts away from issuing harmful edicts that promote their needs over those who are unable to self-advocate. Bullying is bullying, even when some with disabilities are doing it.

  2. Wendy says:

    Bravo. Supported decision-making is the way to go!

  3. Jennifer says:

    “They apparently hate the sensible, time tested legal concept of guardianship and here is the evidence. Rather the State and strangers without accountability have control than the severely impacted individual and their family or legally appointed guardian.” No, they’re saying the disabled person themselves should have control. Either you didn’t read the article, or you just find the idea of self-determination unfathomable.

  4. Dadvocate says:

    Jennifer – I read this piece, and the actual UN guidance, quite closely. It may surprise you to learn that, as it applies to the vast majority of people with disabilities, I strongly support person centered planning, money follows the person, and self-determination concepts, as long as the choice exists for individuals to opt out if they want to assign these roles and responsibilities to others. But, unlike the UN, I oppose the application of a rigid policy that in ALL circumstances seeks to undermine or eliminate the important tool of guardianship in crafting individual solutions and supports, especially for individuals with severe disabilities that make it “not reasonable to know what the individual wants” (their words) .
    If decisions in these circumstances are not the purview of the legally appointed guardian, who typically exercises these serious decisions with judicial oversight, then by whom will these decisions be made? The State?

  5. Dan says:

    Microboard are still a new concept. . . . but are succeeding far better than the UN mandate at honoring and supporting a person with disabilities rights to self-determination. . . . yet providing protections often needed, through people who care about that particular individual.

  6. Mary Lee says:

    The UN panel are not considering the consequences to a disabled person having control over all their choices without a guardian advisement. The guidelines are way out of line for the more severe intellectually disabled adults. We need to make they’re lives better; not put them in a situation of determent.

  7. Shaking my head says:

    I agree with Dadvocate. There are people with disabilities that have to have decisions made for them. They may be nonverbal with no means of describing their wants, yet alone needs. Also who will pick up the pieces when the person with disabilities spends all their money? What happens when the downs gets pregnant and cannot take care of herself yet alone a baby? These people need the protection of a guardian. Higher functioning adults may and should be allowed to make decisions for themselves but too many of them cannot and that is why there is guardianship. You wouldn’t let your 1st grade child choose what they want to eat as they would almost always want candy. I believe in trying to have the disabled be a part of their decisions but many of them would make poor choice and choices have consequences. Who takes care of the fallout? Usually the family. Or the person could end up in prison and cost even more in tax dollars because someone was afraid to take responsibility for this person and take away his rights. Well I guess in prison his rights are gone as well.

  8. Whitney says:

    I am going with the UN. I am also going to say Shaking My Head. It seems that you have very little faith in High Functioning disabilities so they make the wrong decisions and yes they should face the consequences and learn from them. Unless the person is breaking the law you have no right to judge. If the person needs a guardian fine then but that guardian should be able to listen to the person. Perhaps he or she may have idea or decision making that might better than the guardian. So far I seen some stupid decisions by the state of Texas and makes resent the decision making abilities of elected officials. Makes me question the states people own decision making ability.

    I don’t care what your stance is on a bill The United States Senate chamber is not a place to read “Green Eggs and Ham” or the Georgia Gun Every Where bill. I am not strongly in favor guns rights but if you want the criminal to have a gun just send them to Georgia. Or better yet give a mass shooter a gun.

    I am for Universal Health Coverage for primary care and preventive medicine. I think Obamacare falls short but it is the law of land. Instead Congress has several laws that need to be look at and budgets and something call a debt ceiling. What they decided to do is play economic disaster with the world markets. They made 40 bills just repeal one single law and held our economy hostage because one lousy law.

    If these are the examples of good decision making it seems that the some of the US Congress can use a guardianship.

  9. BrianB says:

    Yep, institutions are starting to disappear and the federal government is more on board with this. Exactly what is done at institutions that can’t be done in a community based setting? Is isolation better for people and does it keep them safer? Non-paid people in the community not only can be friends and co-workers but they are less likely to defend problems they see than those in the system.

    Power with, versus power over people with disabilities is a radical concept it seems. I’ve seen people who only need some support held back, taken advantage of or manipulated by their guardians. The article and the UN document did not say some government agency would take over “best interpretation of will and preference” though it did say a mechanism should be in place to contest anyone in this role.

  10. Mark J Greene says:

    It’s time for the United States Senate to ratify this treaty or give the reasons why they are still opposed!

  11. Grace Stensom says:

    Does this mean that a person with severe intellectual disabilities has the capacity to decide whether to take life saving medication or psychiatric prescribed drugs that pact their quality of life. The UN oanel obviously are out if order on this situation. Further, where is the respect ti the legal process to gain guardianship? This is a mockery and should be reversed.

  12. Barbara Ray-Velazquez says:

    That is the most ridiculous thing I have heard. I care for an individual who has been declared incompetent and also has Prader-Willi Syndrome. She cannot read, write, tell time, has no concept of time or how the world works. She believes street lights control day and night. Left to her own devices she would not bathe, she would be awake at 3 in the morning, dressed in clothes inappropriate for the weather, waiting for a van that is not due till 8am. she would eat everything in sight…out of garbage cans, off the floor, out of dishpans. She would eat until she vomited and then eat the vomit. She would eat snot tissue, menstrual blood and feces. Allowing her to do as she pleased would be the death of her.

  13. Caitlin says:

    I have numerous disabilities: brain injury, physical disability, FMS, seizures, etc. and I feel this is a good thing. I’m twenty three and am tired of having doctors and such ask about talking to my mom, or when she’s with e at the hospital, they talk to her about what to do, rather than me. I’ve heard a great deal about other people with disabilities being poorly treated under the decisions of their guardians, and it sickens me. I do understand that some people with disabilities need guidance and advocacy, and I am all for that. “People with disabilities, including those with psychosocial or cognitive impairments, must be supported in making decisions, and not have decisions made for them, even when it is thought to be in their ‘best interests.’”– this is a step in the right direction.

  14. Theresa says:

    Seems our laws are working fine. These are just pie in the sky fantasy ideologies most likely made by people who have no idea what it’s like to care for a disabled person. If my daughter made her own decisions she would eat ice cream every meal and spend all her money on Barbies.
    One size fits all never works.

  15. Mike Jacobs says:

    I would assume that since the panel advocates for complete self-determination thant those individuals with developmental disabilities who make ‘bad’ decisions should face the same consequences as an individual who has no developmental disabilities who make like decisions. Does the panal also advocate doing away with all tax-paid services targeted to individuals with developmental disabilities no longer receive public funding. Sounds like the Tea Party is alive and well at the UN.

  16. Whitney says:

    It is going be a balancing act. Yes, I do see situation where people need to have decisions made for them. The problem is that parents do not live forever and they need to teach a child to make decisions for themselves and be independent. At the same time not all disabilities are capable of making decisions for themselves. I am saying this to elderly and children who have diminished brain functions. As a person grows older the do develop dementia and this leads to alzheimers and no one is screaming about their decision making capability. Oh we can shirk a person with disability’s rights because they don’t understand. If we treat the elderly the same way the AARP screams bloody murder. There has to be supports for both groups. Further more we are limiting people with disabilities rights to not live a full life.
    No one size does not fit all but the things intellectual disabilities need are far different from high functioning. The problem is society is treating high functioning disabilities as the same with intellectual disabilities and that approach is also one size fits all.

    As for guardianship you going hate this there is no standardize qualifications for it. I heard of people with disabilities getting abused by time honored method. So there is no defense people with disabilities.

  17. Fortune says:

    I think basically everyone objecting to this failed to notice the line about supporting disabled people in making decisions.

    Plus some of your generalizations about what will happen are downright alarmist. And your characterizations are way off. Non-verbal doesn’t mean unable to communicate, and intellectual disability doesn’t mean unable to make good decisions.

  18. Stephanie Grice says:

    Does this include those with disablities who live in charleston south carolina as well? Because i know someone who right now has someone in charge of there finances,but they arent doing right by the person with the disability and this person is living in her own home, why cant she take care of her own money and bills. She buys her own food and does her own laundry…..

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