hope this is the right place, concerns about rights of the disabled

[twojo21]

i have been following the terry schiavo case & am becoming increasingly concerned with what effect this outcome could have on individuals with disabilities and their medical rights. i have been looking online & have made some calls regarding this & similiar rights information for the disabled but am going in circles. is anyone else concerned about what effect this could have on society and for the rights of the disabled & their parents/guardians?

i dont mean to offend anyone or start a debate, just looking for some information & others like me.

concerned,
twojo21

 

[SueM in MN]

This is an OK place, with some absolute guidelines.
Just a reminder to keep it friendly and not get too heated. I also don't want to see it get into who is right or wrong, right to life or death. It should remain based on what are the resources available only and on facts not feelings.
Also, this thread will be closed in 24 hours or earlier if it goes out of line before that. I don't want to (and won't moderate arguements; I will close them)

There are some allegations by the family and some of the caregivers that the husband has forbidden care that is normal nursing care for someone in Terri's condition (range of motion, keeping her wheelchair in repair so that she can be taken out of bed for a change of position/surroundings, even forbidding the curtains to be open in the room so she can get some variation of view).
This is basic care that is not connected with whether or not she is capable of making her wishes known, whether or not she is in a vegitative state. It's just part of the care that would be given.

If I as a nurse was being prevented from carrying out needed care by the patient's guardian, I would be required to file a report to the state department of social services to indicate that a vulnerable adult is in need of services that are being prevented from being given. Social Services would be required to investigate and (if the guardian was preventing care) the courts would determine whether the guardian should be replaced.
I have not seen anything in the news about whether any investigation has occurred. Some of the "talking head" lawyers have said that the parents have had a chance to challenge the husband as guardian, but from what I have heard, it appears the challenges have been before the same judge who appointed him as guardian in the first place. If these allegations have been investigated and found to be of no merit, that should be out there more in the news. If they have been investigated, that should be out in the open too.
But, I wanted to point out one of the process available (referral to Social Services) in every state.

 

[Figaro]

Here is an excellent synopsis of the entire legal case. One thing to understand is that while Michael Schiavo started the ball rolling to have the feeding tube discontinued, he did NOT make this decision even though legally he had the right to do that as her spouse. What he did was ask the court system to decide and after exhaustive investigations they (the courts) determined that it was Terry Schiavo's wish to not be kept alive via a tube feeding.

This synopsis (from a conservtive political site) explains in depth what happened/is happening and was an enormous help to me in understanding the issues involved and as best as we can tell (from the outside looking in), what went on.

http://www.footballfansfortruth.us/archives/000872.html

 

[SueM in MN]

There is at least one thread on the Community Board haing to do with this case.
To avoid getting into heated discussion, this thread will be for resources in looking at rights.

One of the things available at any hospital for looking at situations is an Ethics consult. It's a requirment that every hospital has an Ethics Committee to look at ethical situations. Anyone involved in the care (doctors, nursing staff, therapists, family) can call for an Ethics consult.
I don't know exactly how it works outside of hospitals (nursing homes, etc), but they have to have some similar process.

 

[SueOKW]

I know that we (my DH and me) are our son's guardians. We are required to fill reports yearly and that includes dr. reports. We are also investigated yearly by some other agencies. (I can't remember who!) And DS is still in school, so there's therapists and teachers etc.

So - for a non-verbal kid I'd say there are plenty of eyes on him making sure he is being cared for correctly. His rights will be jealously guarded by the tens of dozens of people that love him, but his father and I ultimately have control of all the decisions. I believe the current case will have no effect whatsoever to his rights, or on any disabled person's rights.

I do believe that this case has forced many many families to make their wishes known about how they wish to die. It's an individual choice to be shared within families.

 

[SueM in MN]

We are also guardians of our DD. It was not an easy process to go thru. And, as mentioned, there are eyes watching besides ours.

 

[Forevryoung]

I think that part of this comes down to one thing- Her parents still believe that she can recover.

This has made the country VERY aware of the necessity of a living will and healthcare proxies and such. Hopefully this awareness will make people go out and file this important paperwork. Families avoid talking about death but it is one of the most important family discussions to have.

 

[twojo21]

thanks so much for the info & replys. my parents are going for guardianship of my brother now that he's turning 18 and eventually i will be guardian at their death or when they are no longer capable. i was just curious if this case could have any effect on the rights of the disabled & my parents right as his guardian or mine. i just now i was concerned about the effects of this case, but i guess only time will tell if this has any effect or not. thanks again dis.