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freethinker
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PostPosted: Sat Nov 28, 2009 10:25 am    Post subject: Reply with quote

Dear zany, that was an incredible story...painful to hear, but still uplifting...I praise your devotion to duty, and your concern for the safety of a man stuck in a system "that is crazier than he is..."
I know nothing of the ADA, other than what I've heard here, so I won't comment...but I know bureaucracy, and how it easily creates the very problems it's supposed to solve....So it's easy to sympathize with your position...Please keep up the good work
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Amphikalein
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PostPosted: Sat Nov 28, 2009 12:26 pm    Post subject: Reply with quote

There is a great deal of misunderstanding about the scope & effect of the ADA out in the public sphere. Over the past 20 years i've often run into situations where the Act was misused by businesses and attorneys as a way to excuse bad policies and actions on the part of organizations. i've also had to handle situations where someone with a disability (or someone 'advocating' for them) have completely misunderstood the actual implications and effects of the Act.

Again, there is NOTHING in the ADA that requires mainstreaming or de-institutionalization of people for whom either approach would be atherapeutic. Now, if it clinically appropriate or desirable for someone to be mainstreamed, then the ADA may apply in assuring that reasonable accommodation is made for reasons of accessibility.

Here's a good online guide that lays out the basics of varying federal laws that deal with disability rights.

zany, in the sad situation that you outlined, assuming the hospital had a copy of the court document appointing his sister as legal guardian, it was illegal for them to hold a hearing to determine anything about his course of treatment without including his sister. Regardless of what their internal policies may be. i suspect the claims they made to you regarding the ADA was simply their way of trying to excuse their illegal violation of his rights as a person who was under legal guardianship. They cannot violate court-appointed guardianship, and nothing in the ADA gives them the authority or legal right to do so.

Now, very often if hospital staff do not have an actual copy of the court's appointment of a guardian, they will disregard a guardian's claims. i've even seen that occur when the institution does have a copy of the order, but it's not in the particular file they're using on the hospital floor. In those cases, a good lawyer, ombudsman, or patient advocate with a copy of the actual guardianship order can usually clear things up in a matter of minutes.
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"Our lives begin to end the day we become silent about things that matter." ~Martin Luther King Jr.

"May we, in our dealings with all the peoples of the earth, ever speak the truth and serve justice." ~Dwight D. Eisenhower

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zany
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PostPosted: Sun Nov 29, 2009 10:54 am    Post subject: Reply with quote

Amphikalein wrote:
There is a great deal of misunderstanding about the scope & effect of the ADA out in the public sphere. Over the past 20 years i've often run into situations where the Act was misused by businesses and attorneys as a way to excuse bad policies and actions on the part of organizations. i've also had to handle situations where someone with a disability (or someone 'advocating' for them) have completely misunderstood the actual implications and effects of the Act.

Again, there is NOTHING in the ADA that requires mainstreaming or de-institutionalization of people for whom either approach would be atherapeutic. Now, if it clinically appropriate or desirable for someone to be mainstreamed, then the ADA may apply in assuring that reasonable accommodation is made for reasons of accessibility.

Here's a good online guide that lays out the basics of varying federal laws that deal with disability rights.

zany, in the sad situation that you outlined, assuming the hospital had a copy of the court document appointing his sister as legal guardian, it was illegal for them to hold a hearing to determine anything about his course of treatment without including his sister. Regardless of what their internal policies may be. i suspect the claims they made to you regarding the ADA was simply their way of trying to excuse their illegal violation of his rights as a person who was under legal guardianship. They cannot violate court-appointed guardianship, and nothing in the ADA gives them the authority or legal right to do so.

Now, very often if hospital staff do not have an actual copy of the court's appointment of a guardian, they will disregard a guardian's claims. i've even seen that occur when the institution does have a copy of the order, but it's not in the particular file they're using on the hospital floor. In those cases, a good lawyer, ombudsman, or patient advocate with a copy of the actual guardianship order can usually clear things up in a matter of minutes.


Thank you so very much for taking the time to respond to me. Yes, they did have a copy of her guardianship papers over her brother from the court. I have a copy on file at my house and everywhere he ends up I make sure they are aware of her guardianship by submitting a copy to them in addition to her home and work telephone number and times of day she can be reached at each number & my cell phone number to reach me in addition a copy of the paperwork that permits myself and my son to be included on all his medical files as a contact that allows us to be informed on anything involving him.

It has been an adventure caring for him over the years. Sometimes we all laugh, sometimes we all cry and sometimes we all become very angry, but we do shield our emotions in front of him and stay calm at all times whenever we are around him. We have gotten to the point that just a glance between us tells us what the other is thinking at the time something is happening that sparks one of our many emotions and we discuss it after we are away from him.

I now am beginning to believe from your information that ADA has been used as an excuse for some of the occurances we have endured. I believe I have been misinformed. Thank you for your valued information. I will go to the website and place it on my favorites list and forward it to his sister through email to also view. The computer & internet has helped us stay in contact so much easier. I love this thing! LOL

A few times we considered lawsuits, but in order to do so we would have to place him in the mix of the lawsuit and we would rather suffer the nonsense then have to put him through such an ordeal. A lawsuit isn't always the answer when weighing the pros and cons. As long as we know he is in a safe environment and the people around him understand his needs and fulfill them we are content. Actually now that he is 65 and sadly in a wheelchair we were able to have him finally placed in an excellent nursing home. He is not combative and does not present physical harm to anyone around him. He just needs an occasional med adjustment & I lucked into finding a doctor for him that has a mother-in-law that experiences the same mental condition as he does so this doctor truly understands the situation & he communicates with me on a regular basis concerning my friend.

Most of the problems we had before were with personal care homes and the staff not trained to deal with people with these type of mental disabilities, but at that time he did not qualify physically for nursing home care. This nursing home has a wonderful staff & is fully 24 hour staffed. It is filled with activities that keep him active and involved during the day. We can even see the difference in his attitude and he has even gained weight and appears to be very content & happy. We still visit him regularly, but we can no longer take him out like we use to, but now bring the party to him. They do on occasion take a group of patients on outings and he is always included. Thank you again for your concern and information.

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zany
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PostPosted: Sun Nov 29, 2009 11:29 am    Post subject: Reply with quote

freethinker wrote:
Dear zany, that was an incredible story...painful to hear, but still uplifting...I praise your devotion to duty, and your concern for the safety of a man stuck in a system "that is crazier than he is..."
I know nothing of the ADA, other than what I've heard here, so I won't comment...but I know bureaucracy, and how it easily creates the very problems it's supposed to solve....So it's easy to sympathize with your position...Please keep up the good work


Thank you Freethinker. Yes it has been an experience and one I would never trade off on. Being around him for so many years now it is understandable how a lot of families just throw their hands up in the air and let others take on the load without being involved, that is when the poor souls are left at the mercy of others and sometimes others are not as compassionate as a devoted family member would be or should be.

Having been raised around him he is like a part of our family. Yes, he believes the people on the radio & televison are speaking directly to him. He confuses things that are said to him. He has imaginary friends he talks to and he actually believes he controls the weather. He has this ritual he performs daily that he believes will make it rain. He is always trying to make it rain so the farmers can have good crops. He has added a lot of enjoyment to our lifes. The last time it rained for days his sister called me and said maybe we should call him and ask him to stop doing his rain thingie' for awhile! LOL

We have a telephone installed in his room so his sister can talk to him daily whenever she is not here on a visit. Sometimes telemarketers call him and we have to laugh because he will tell us they hung up on him. LOL We thought about doing his number on the do not call list but figured it gives him someone to talk too occasionally and also we can sort of punish the telemarketers. LOL He does have us maintaining our sense of humor!

The real thanks for helping us get him through life the best we can has to go out to the truly wonderful, devoted & trained professionals we have made contact with over the years that really care for people such as him.

God Bless those that truly care and devoted their careers for the well-being of those less fortunate then we are out here. We couldn't have gotten him this far without their help. Yes every group has their bad apples, but there are a lot of good people out here also. I felt like I was just being doom and gloom in addressing some of our experiences. That wasn't and hasn't been always the case.

Thank you again for your kind words of support.

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The optimist expects it to change;
The realist adjusts the sails."
-William Arthur Ward-
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zany
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PostPosted: Sun Nov 29, 2009 12:03 pm    Post subject: Reply with quote

Amphikalein wrote:
There is a great deal of misunderstanding about the scope & effect of the ADA out in the public sphere. Over the past 20 years i've often run into situations where the Act was misused by businesses and attorneys as a way to excuse bad policies and actions on the part of organizations. i've also had to handle situations where someone with a disability (or someone 'advocating' for them) have completely misunderstood the actual implications and effects of the Act.

Again, there is NOTHING in the ADA that requires mainstreaming or de-institutionalization of people for whom either approach would be atherapeutic. Now, if it clinically appropriate or desirable for someone to be mainstreamed, then the ADA may apply in assuring that reasonable accommodation is made for reasons of accessibility.

Here's a good online guide that lays out the basics of varying federal laws that deal with disability rights.

zany, in the sad situation that you outlined, assuming the hospital had a copy of the court document appointing his sister as legal guardian, it was illegal for them to hold a hearing to determine anything about his course of treatment without including his sister. Regardless of what their internal policies may be. i suspect the claims they made to you regarding the ADA was simply their way of trying to excuse their illegal violation of his rights as a person who was under legal guardianship. They cannot violate court-appointed guardianship, and nothing in the ADA gives them the authority or legal right to do so.

Now, very often if hospital staff do not have an actual copy of the court's appointment of a guardian, they will disregard a guardian's claims. i've even seen that occur when the institution does have a copy of the order, but it's not in the particular file they're using on the hospital floor. In those cases, a good lawyer, ombudsman, or patient advocate with a copy of the actual guardianship order can usually clear things up in a matter of minutes.


I forgot one thing. I still don't understand why the Social Security Administration does not recognize court documents & we have to present him to sign his name when he has no idea what he is signing or why. & actually legally his signature through the courts would not hold up on any contract since he was legally declared incompetent. That one I will never understand. The representative at the office told us point blank they do not accept court documents & we have to bring him into the office.

Actually it no longer matters where he is concerned since his checks no longer go to his sister and we were finally able to have them turned over directly to the nursing care facility where he is now. But I think this would have to be frustrating to others that still have direct involvement with that agency in this type of a situation.

Our Federal Government should be the ones that should recognize legal court documentation one would think, but they don't!

_________________
"The pessimist complains about the wind;
The optimist expects it to change;
The realist adjusts the sails."
-William Arthur Ward-
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zany
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PostPosted: Sun Nov 29, 2009 12:28 pm    Post subject: Reply with quote

Amphikalein wrote:
There is a great deal of misunderstanding about the scope & effect of the ADA out in the public sphere. Over the past 20 years i've often run into situations where the Act was misused by businesses and attorneys as a way to excuse bad policies and actions on the part of organizations. i've also had to handle situations where someone with a disability (or someone 'advocating' for them) have completely misunderstood the actual implications and effects of the Act.

Again, there is NOTHING in the ADA that requires mainstreaming or de-institutionalization of people for whom either approach would be atherapeutic. Now, if it clinically appropriate or desirable for someone to be mainstreamed, then the ADA may apply in assuring that reasonable accommodation is made for reasons of accessibility.

Here's a good online guide that lays out the basics of varying federal laws that deal with disability rights.

zany, in the sad situation that you outlined, assuming the hospital had a copy of the court document appointing his sister as legal guardian, it was illegal for them to hold a hearing to determine anything about his course of treatment without including his sister. Regardless of what their internal policies may be. i suspect the claims they made to you regarding the ADA was simply their way of trying to excuse their illegal violation of his rights as a person who was under legal guardianship. They cannot violate court-appointed guardianship, and nothing in the ADA gives them the authority or legal right to do so.

Now, very often if hospital staff do not have an actual copy of the court's appointment of a guardian, they will disregard a guardian's claims. i've even seen that occur when the institution does have a copy of the order, but it's not in the particular file they're using on the hospital floor. In those cases, a good lawyer, ombudsman, or patient advocate with a copy of the actual guardianship order can usually clear things up in a matter of minutes.


I should add I am speaking of Social Security checks and not SSI because when we went into to court to declare him incompetent the attorney told us he would be entitled to Social Security checks from his parents income since he was mentally ill before he reached the age 18. Since his mother was a RN and her income was greater then his father's so they draw them off of her account. We had to present all the documentation of his mental illness and treatments, etc. he was given before he was 18 in court and it went through.

We weren't even aware of that until we found out his sister couldn't take charge of him & his care until she went into court to obtain legal guardianship over him. That helped us to pay towards his stay in personal care homes because we all worked and couldn't watch over him twenty-four hours which is what he requires. Until we could get all of that settled we were taking vacation days, missing work, etc. watching over him.

So it was the Social Security Office and their Social Security Disability program directly that required us to have him present at their office whenever we needed to do anything regarding his account.

_________________
"The pessimist complains about the wind;
The optimist expects it to change;
The realist adjusts the sails."
-William Arthur Ward-
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Amphikalein
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PostPosted: Sun Nov 29, 2009 11:28 pm    Post subject: Reply with quote

zany, i have long believed that caregiving is one of the hardest jobs anyone can undertake. He's very fortunate to have such caring people to watch out for him.

i'm not an attorney, so the question about the SSA is above my pay grade. Still, i've know them to put up unnecessary roadblocks in all kinds of situations.

You may already know of them, but the National Alliance on Mental Illness (NAMI) can be a great resource for individuals living with MI as well as their families and friends. Perhaps their website will shed some light on the guardianship and other issues you've been encountering.
_________________
"Our lives begin to end the day we become silent about things that matter." ~Martin Luther King Jr.

"May we, in our dealings with all the peoples of the earth, ever speak the truth and serve justice." ~Dwight D. Eisenhower

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