Fw: [ILAssnMicroboardsandatives] Guardianship Decisions

[Guest guest]

Excellent continuation of the discussion on guardianship.

Ellen

Ellen Garber Bronfeld

egskb@...

[iLAssnMicroboardsandatives] Guardianship Decisions

Dear ,

Deciding on guardianship is a difficult question and by no means should be taken

lightly. But there is no right or wrong answer and this has to be based on each

individual family - the dynamics of the family as well as the person with

disabilities - their needs, desires, skill levels, and choices.

We are the guardians of our son, , but I do not look at that as " taking

away his rights " but adding another tool with which we can support him and his

rights with the bureaucracy of the systems that persons with disabilities must

deal. is 34 years old and we have been put in many situations that I would

shudder to think what would have happened if we would not have had guardianship.

does not have any of the needed skills to deal with the waiver, SSI, SSDI,

Medicaid, health systems, PUNS, PAS agents, IEP's, ISP's, agencies, court

system, etc on his own and sometimes (especially if situations get adversarial)

it is VERY difficult to try to get information or work with these people unless

that you are guardian and can produce that legal document. This is sad but

reality. The systems do not have to legally include you in any of the processes

and even if you have Health Care Power of Attorney or Property Power of Attorney

and the agency wants to get difficult they will inform you that doesn't take

effect unless the person has a change of status and what has been the recent

change...haven't they always had the disability? Then you end up in court to

make even the smallest decision like taking certain medications. I think that

the article that posted is excellent and I would say that the first and

foremost important tool for a person with disabilities is an involved family and

community of support. I can say that I feel has had the benefit of an

involved family as well as many other friends loving and pulling for him in

every way giving him the luxury of a wonderful, quality life. That is what a

microboard is all about. And if asked, would I say that the guardianship was the

force behind this quality life...because we could produce a piece of paper,

certified by the courts that says we are his legal guardians, absolutely not!

But unfortunately in this real world society, persons don't always have the best

interest of your child as a priority, and th! erefore, that guardianship paper

is a tool that can legally be used to enable that circle of support to always be

able to offer the support that they need...not be left out and informed of

information that is vital to that person.

Let's look at some scenarios...

(1) Young woman who is 26 years old and lives in an elderly high rise. The

manager of the high rise, the PAS agent, and representatives from the sheltered

workshop that she attend have a meeting and decide that it would be best for her

to be placed in a group home where there are 8 persons and 24 hour staff. They

know that her mother and personal assistant would object to this so they tell

the young woman that since she is her own guardian, she doesn't need to tell her

mom and PA that they are having this important meeting that is going to be about

finding her a great new home. And legally they don't! Fortunately, she is very

close to her mother, gets really anxious, and tells her mother. Her mom and the

PA attend the meeting. Because of her microboard, caring family, and circle of

support, she is now living in her own home in her hometown and has a business.

(2) Young man 20 years old who is in transition in high school. He is in a very

loving family who has always been very active in his support and life. He gets

involved with a group of teenagers that think it is " fun' to take him to the

parking lot during the lunch hour and give him drugs. He wants to in the worst

of ways be a " part of the group " and will do anything these " friends " ask him.

These illegal drugs combined with his seizure medication cause him to become

violent. He pulls a knife on his mother and the police take him to a psychiatric

ward near us. After the mandatory time he signs himself out of treatment

(because he is his own guardian) and his parents (because they are not legal

guardians) cannot keep him there for treatment, even though he has insurance to

cover this. The court system then decides what treatment center he is admitted

to and he is mandated by the court and placed in a mental institution that is 80

miles from home.

(3) The agency feels that the 32 year old person living in the home needs

psychotropic medication because of their behavior. They tell the person that

this will make them feel lots better and control their anxiety. They do not have

to involve the parents since the person is their own legal guardian. If the

situation becomes too adversarial and things cannot be worked out, the only way

for the parent to legally fight this battle is to go to court and let a judge

decide.

These are situations that are perhaps the extreme, but they do happen. I do not

feel like the guardianship that we have of restricts him in any way. But

you once again have to decide this depending on your child and their abilities.

does not even realize or care that we have this guardianship. It has been

explained to him and in his limited understanding of the legal system he has

agreed to this. We do not use this to limit his choices...he makes his daily

decisions like what he chooses to wear, what he chooses to eat, where he chooses

to go...on his own. Why would I want to restrict choices that he can make?

Can a guardianship be abused? Yes, anyone can abuse a guardianship but my guess

would be that any family that abuses a guardianship does not have a strong

involvement and circle of support. Can a guardianship prevent all the abuse of

persons with disabilities in this world? Of course not. It is not a magic wand

as the article states. But if you have a circle of support that really is

involved daily, the guardianship is the legal tool that gives you the authority

to make sure that there are checks and balances in the person's life and it is

the device that requires agencies/organizations/systems that they HAVE TO

communicate with you too.

In the end, what is the most important is family and friend involvement. But

there is nothing wrong with the guardianship tool if the person with a

disability does not have the ability to take care of the business, financial,

and bureaucracy in his/her life and doesn't object to the guardianship. What is

most important about this tool is choosing the right guardian and successor who

already is a part of that circle of support, knows the person well, loves the

person, and will use this tool as a way to enhance the choices, needs, and

desires of the person.

Barnhart, RN, MS, MAEd

Barnhart Consulting, Inc

Central Illinois/Southern Illinois Regional Organizer

Illinois Association of Microboards and atives

106 Avenue

Canton, Illinois 61520

309-224-4093

sbarnhartconsulting@...