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Incapacity Definition and Factors

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I do not agree with ADLs being considered in the definition of incapacity. I agree with the other items.

As a result of this comment, the Committee recommends editing the proposed definition to remove inability to "carry out the activities of daily living" from the grounds for incapacity.

Functional limitations "to carry out the activities of daily living" should NOT be construed as synonymous with incapacity. I strongly recommend that this clause be removed from the incapacity definition.

As a result of this comment, the Committee recommends editing the proposed definition to remove inability to "carry out the activities of daily living" from the grounds for incapacity.

I am very concerned about the "even with assistance" portion of the incapacity definition. As an attorney who helps parents secure guardianships of disabled adult children and as a mother of a child with Prader-Willi syndrome, I see this language as a potential nightmare for families. Almost any child/adult with disabilites can perform these functions "with assistance." I see this as a roadblock in getting guardianship for adults who really need it and as a roadblock for parents in being disallowed from continuing to help their children with their medical care and with other crucial areas of care.

As a result of this comment, the Committee recommends editing the proposed definition to include the phrase "even with assistance that the person is willing to accept."

You propose that adding the language "that a person is willing to accept" would solve the problem created by the language "even with assistance." It does not. Many adults with disabilities like Down syndrome or Prader-Willi syndrome are willing to accept all the help they are provided. The scenario you are creating for these individuals is that the day they turn 18, because parents will not be able to get guardianship over them, physicians will no longer speak with the parents regarding medical care, social security will no longer speak with parents regarding financial issues, police will not look for the individual as readily if he or she runs away because the individual is an adult and there is no guardian. This proposal is fraught with disaster. You are saying that because a person can "function" with assistance, they should not be allowed to have a guardian. But the day they turn 18, the laws essentially take away that very assistance. I strongly recommend that the language should mirror the Uniform Guardianship and Protective Proceedings Act and say only "even with appropriate technological assistance." The definition of assistance should not include the assistance of a person.

I see many problems with this provision, especially for parents. If I am reading this correctly, when my autistic son turns 18, I will have no say in his medical treatment, care, etc. even though he needs me to provide basic necessities and help him perform daily activities? Please re-examine this. It will cause a lot of problems for parents trying to help their adult children with special needs.

Please re-evaluate this provision, particularly the language, "willing to accept." This could cause serious problems for parents trying to care for their adult children with special needs and prevent parents from having access to and a say regarding their child's treatment and care.

There is a problem with the wording "even with the assistance that a person is willing to accept." As others have mentioned, this assistance is often provided by a guardian, who will not be able to give the same level of assistance if they are not the guardian. There is also a problem that some of this assistance could be dependent on financial means, government or other public programs, religious organizations, etc. These forms of assistance and their availability to the individual could be temporary, and could require a new judicial decision every time one of these programs changes. Possible ways to reword it could include "even with permanently available assistance that the person is willing to accept in the absence of a guardian" or some other wording that protects an individual who is relying on a guardian or other programs.

So it is proposed that because our children with disabilities can function "with assistance that a person is willing to accept" that they will be denied that same assistance after they turn 18? This is a really scary proposition. My son with Prader-Willi syndrome is able to function under my guidance and assistance (and of course he accepts it). But because he can function this way, according to this definition, he'll be severed from a continuance of that protection as an adult? Please reconsider the wording!

I agree with the comments mentioned previous. My son needs me to help him with every detail of living, and he accepts it. He is totally unable to function on his own. Please consider our disabled population when wording these laws.

I am very concerned that most of this proposed wording will preclude parents of disabled children from obtaining guardianship. This is because the proposed definition of incapacity includes the phrase "even with assistance". Isn't that what a guardian is for? (to provide needed assistance?)

My son cannot care for himself without assistance. Before he turned 18, we had full rights as parents to interact with schools, medical providers, government, etc. on his behalf. After he turned 18, we could not, without his approval, interact with others for him or provide needed assistance. Only being awarded guardianship allowed us to provide him the needed assistance to keep him from being incapacitated per your proposed definition.

In our case, the proposed wording says my son is not incapacitated, becase he can accomplish the listed behaviors with assistance. However, how is he supposed to receive that assistance, unless we are entitled legally to be empowered to interact with others on his behalf in order to provide him the assistance he needs? After he is 18, we can only provide it as a guardian, or with his consent (which he cannot reliably cognitively provide). If he has no incapacity per the proposed definition because he can function with assistance, but has no access to the needed assistance because he's udnergoing an involuntary emotional meltdown and he had no guardian, then he really is incapacitated, right?!

My son cannot care for himself without assistance. Before he turned 18, we had full rights as parents to interact with schools, medical providers, government, etc. on his behalf. After he turned 18, we could not, without his approval which he cannot reliably provide, interact with others for him or provide needed assistance. Only being awarded guardianship allowed us to provide him the needed assistance to keep him from being incapacitated per your proposed definition.

Don’t take away our disabled children’s ability to receive the very assistance they desperately need. In most cases, they can only be assisted and kept from being incapacitated, per your proposed definition, by having a guardian.