posted this in parent place but would like more feedback.

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My son is 17 with HFA and we were told to think about guardianship. I looked at all three types and if we did any it would be the least restrictive, but I am leaning towards not doing it. I would like him to sign a waiver so we could be included in his medical aspects of his life. Does such a waiver exist and if so, what is it called? Perhaps we would only do this at the doctors visit.
I don't think he is ready at all to assume all responsibilities of an adult, but I don't think a lot of people who turn 18 are ready for the real world even if they are NT. I want to help guide him while he grows into the adult he will be and I expect to help him for several years. I guess my question is whether someone can give me a good reason for being his guardian advocate. My husband is worried that is he gets into legal trouble it would be better for him to have a guardian. I know he is terrible at handling money, but I think he can be taught that once he is independent. The only reason I can think of is sometimes he gets difficult to reason with and I would hate to watch him go through difficult times if he doesn't want to listen or discuss things with us. But, I don't think this is a good enough reason to proceed with guardianship. I don't think we will do the guardianship at this point, but.... your comments and suggestions are welcomed.

shouldn't you tell us more about him if you want good feedback?

I don't know how well off your son is as far as social and life skills, but I can tell you from my own experience that preventing him from making his own mistakes can prolong the time until he's an independent adult. Obviously with things like large sums of money, health, etc...there's just some mistakes you can't let him make. But if I knew, as a young man, that I wasn't REALLY in charge of my own affairs and always had a safety net waiting, I don't think I would have made as great an effort to do things on my own.

First of all, TECHNICALLY such a medical waiver is ILLEGAL in the US. They passed a new law quite a few years ago called H.I.P.A.A.

http://www.hhs.gov/ocr/privacy/hipaa/un ... index.html

Although he COULD sign a waiver allowing YOU to see it, it expires in like a MONTH! Interestingly, this ONLY gives your doctor the ability to get it and present it to you. It doesn't necessarily really give YOU any rights. Why do YOU want that ANYWAY!?!? My MOTHER wanted that, and I keep telling her NOPE, or lying. She has no right, and it causes problems for ME, not to mention that I must PERSONALLY update it every month. NO THANKS!

Ironically, the first thing you have to learn as an adult is that NOBODY wants to do their job. If you go to a car mechanic, for example, know SOMETHING about cars, or you will likely get RIPPED OFF. TWICE I had to leave a mechanic in a DEATH TRAP, because I couldn't trust them to fix THEIR mistake.

For "legal problems", you have TWO options...

1.PROVE he is INCOMPETENT, and be declared his guardian in a way that he is not to sign any documents without YOU as cosigner. Frankly, unless he is MR or similar, I think you shouldn't even TRY!
2.Provide for a legal advocate(AKA ATTORNEY) to help him WHEN there is trouble or a big purchase.

MOST people don't realize that they have more rights than they believe, and/or are too trusting or, AGAIN, don't fall back on the fact that people do NOT want to, and often can't, do their own jobs. Look at banks! Do I REALLY have to list all the ways they are INCOMPETENT!? Granted, I could list things you may NEVER have heard of, but this recession makes others so painfully obvious. I did something 8 years ago because I assumed they had at least a LITTLE intelligence! I actually told people “This can NOT stay this way. It HAS to change! If it doesn't, there could be another depression.”. MAN, I wish I just bought options. I was WRONG! Things went the wrong way and, like I predicted, there basically was a depression!

This means, for example, that you can never REALLY balance your checkbook. SURE, get a number as close as possible to what you SHOULD have, but keep checking against the bank. I check EVERY bank, utilities, AND my credit report like TWICE a month!

Well as far as my son is concerned he has normal intelligence and is doing well in school although he does have a student specific para. She takes notes in the class and helps when he needs to take a break.

We were told when he was very young that he was cognitively impaired and the school wanted to put him in classes that were very secluded. I got the impression they were saying he had LFA. We did not follow their advice and he ended up proving that he was very capable in reg. ed.

Socially he is still very young. He acts much younger than his actual age. But again, he is maturing just at his own pace.

He passed all his state exams in 9th grade for on grade level, but in 10th grade fell short in reading. He loves computers, Sims 3, and dogs. I think he is a great guy but I am biased.

I guess since I have been so involved in every aspect of his life I am fearful of going on to the next stage in the process of life, which many of you might find crazy. But again I want to state I am siding with the idea of not doing any type of guardianship.

Since his developmental pediatrician and a few other people have tried to convince me otherwise, I wanted to hear arguments against doing it (as well as if there are any reasons for doing it). I was told by his doctor that if he has a period in his adulthood where he needs more assistance than normal because he has had a meltdown and regressed, I would not be able to help if I didn't do the guardianship. I know this is fear based.

I love my son and only want to do what's right by him.
Your assistance will help me make my my thoughts about this clearer and also be able to have an answer for others who disagree with my decision.

I found Sacrip's take on guardianship very helpful. Thanks to all replies.

One question that rarely gets asked but should is "In what manner can the guardianship be removed should the person prove to be able to handle their own affairs?" In Minnesota for example, the answer to that question is that the person with autism would have to prove they do not have autism anymore or in other words, never. If you expect your son to be able to be an independent adult in a situation like that, you may be better off holding off on getting guardianship unless you are absolutely sure it is needed.

The next question to ask if "Does the state allow for a Least Restrictive Environment" setup for guardianship?" This means that the guardianship is only effective for areas that the person would have a hard time with and in other aspects, the person is considered an adult. I do not know about Minnesota but I know that Wisconsin have laws along those lines. In fact, the general rule in Wisconsin is that unless the adult cannot perform the act or if the decisions of the adult affects safety of themselves or others, the adult has first discretion in making the decision. This may affect you decision because your situation may be where your son if perfectly capable of making certain decisions for himself but others will require assistance.

I do not know if you have tried to contact a lawyer yet but I suggest you do so and the above 2 questions should be the first ones asked. If the lawyer cannot answer those questions or gives you a vague answer, then run because they either have no clue as to what they are doing and could mess things up, just want your money or both.

Unfortunately, this is one area of law that has not kept up with the research and advances in ASDs. As such, the law is more adapted for LFAs or persons who really will need assistance for the entire of their adult lives and does not take into account those who may not be ready at the arbitrary age but will be ready given 3 - 5 extra years. Right now, in most states, the situation is either all or nothing. I may consider looking into change in Minnesota where I reside but others would have to affect change in other states because guardianship/conservatorship is a state specific issue.

I wish you luck in whatever you decide. However, due to the consequences in either decisions, I suggest you do as much research as possible, not only with us and doctors but with lawyers too and other parents who are in a similar situation.

My HMO, Kaiser Permanente, has a form specifically to authorize family members access and input to another family member's medical information. This means I can, for example, make appointments or ask questions regarding my husband's or son's medical issues. It's very helpful and convenient since I'm tho one who does most of that sort of thing in the family.

I think just a few more years is all he will need anyway. He has out- performed what all the "experts" have thought. I have asked a few lawyers and I don't get a lot of answers.
I do have forms to fill out at home that I got at a disability conference and it does have areas for the guardian to check off where that person needs additional help. It is a yearly form that is filled out and it is very lengthy. Since it is yearly, I think it is canceled when you stop filling out the forms and filing them with the court. In the US the least restrictive guardianship is called Guardian Advocate. The person still can have a job, get married, ....The areas are
*place of residence
*medical
*social life
* act as representative payee or to seek benefits

I don't want to be his rep. payee, although I know how confusing developmental services are and I would have to help him seek benefits.

I don't want to tell him where to live, but I do want him to get training and skills needed.

I don't want to be in charge of his social life.

I only want some input on medical stuff. It doesn't have to be everything.

I don't think he will need it for a long time so do I need to do the paperwork at all? I think the dev. pediatrician feels it is easier to do it now than to wait for problems later and then try to do it. Everytime I think about it, I think the opposite of what he says. It is late so I don't think I am thinking clearly now. I am glad nothing has to be decided quickly since his b-day is in May.

Thanks for the responses.

I suppose a lot depends on how willing he'd be to come to you with any problems. If he were living in, say, a dorm room and had trouble balancing his checkbook or something, would he call you before things got out of hand? This type of guardianship implies day-to-day life issues that he'd either not recognize as problems, refuse to seek help for, or otherwise can't afford to make mistakes with. The third kind is understandable for the need of a guardianship, but the first two depend very much on his willingness to keep you involved with his life after leaving home (if he does). You didn't say so yet, but I'm starting to think this guardianship is something he does NOT want you to have, or doesn't understand what it means. If that's the case, try and explain what it means and what it doesn't mean for him, and see if he can help find a solution you both can live with.

Thanks for your reply. I haven't come straight out and talked to him about it. Although I think he may disagree with it. That is a step I am planning on doing, but at this time I am kind of mulling over all the information. Another reason I haven't discussed this with him is I don't want to turn it into some kiind of bargaining chip.
I would hope he would come to us with any problems. At this point I think he would. Sometimes he gets angry about our decisions and he has difficulty accepting things because he perserverates on them. In the end he usually will apologize to me for being difficult.
Thanks,
Pam

At his age, knowing me, I would have taken it probably the worst possible way: "I just don't think you're smart enough to handle your own money and health decisions, son." Needless to say, this is NOT about his intelligence or your ability to trust him, but convincing ANY teenager of that when giving them limits is an uphill battle. I know you don't want this issue to be a bargaining chip but the question of "What do I have to do to prove I don't need this?" will almost assuredly come up, and you're gonna need an answer ready, the more specific the better. If he has a better idea (assuming he doesn't already know) of what it means to be independent, he might better apply himself to learning those skills.

I didn't found that anything changed for me after age 18.

(Nothing, to be exact. Maybe I missed out on something?)

I also can't manage quite a few things that others my age can due to the autism, but I have family and even a therapist I can ask for advice. What could go wrong?

But then I've never been a person who suddenly runs away from home, takes drugs, gets drunk, spends money, has wild affairs and does absolutely stupid things out of the blue as some others my age do.

In short, I'm reliable but also very strong in what I do and want to do. What others say is 'reasonable' (and might for them indeed) is not always reasonable in my position and I make my own decisions - of course, after carefully thinking them through. (A trait not all humans age 15-25 possess hehe?)

You are quite right that most teenagers and young adults are not ready for independence. You also are correct in saying most teens would object strongly to anyone trying to control them through this type of action.
As an NT, I don't think I (or any of my siblings) were ready to take responsibilty for everything at the age of 18. But, because of this, I wonder whether I really need to do this yearly guardianship. My son is a homebody and I don't think he would ever get involved with drugs, alcohol, and other vices.
I am fairly convinced we can do this without the paperwork. So far no one has told me any horror stories of something that happened as a result of their parents not doing this. I think that if needed, we could always proceed later if a time of difficulty arose.
Thanks again for your response.
Pam