Guardianship

[Princess Disney Mom]

My next trip my daughter will be 18. She is auttistic and functions like a three year old .should I have guardianship before we go. I don't know much about this so any advice is appreciated.
Thanks

 

[Mrsjvb]

if your daughter is going with you there is nothing to be done. if she is staying behind than absolutely you need some sort of POA for whoever will be taking care of her.

durable Medical POA if nothing else.

 

[krisnme]

I once explored guardianship for my DS when he turned 18. The lawyer explained that this would remove his right to make any decisions for himself. As he is HFA and capable of having an opinion and making decisions with guidence, I instead submitted paperwork to the ins. and carry a power of attorney signed by him allowing me to make medical and legal decisions on his behalf. Guardianship is a big step, consult a lawyer. If she is traveling with you and is not able to make emergency medical decisions for herself, the hospital would have you, as next of kin, make those decisions.

 

[Princess Disney Mom]

I once explored guardianship for my DS when he turned 18. The lawyer explained that this would remove his right to make any decisions for himself. As he is HFA and capable of having an opinion and making decisions with guidence, I instead submitted paperwork to the ins. and carry a power of attorney signed by him allowing me to make medical and legal decisions on his behalf. Guardianship is a big step, consult a lawyer. If she is traveling with you and is not able to make emergency medical decisions for herself, the hospital would have you, as next of kin, make those decisions.

That's good to know. She is like a two to three year old child.

 

[LisaBi]

Trip or no trip - If she is low functioning, I would go for the guardianship, or at least POA. My son has Down Syndrome and turned 18 in April, and I set it to have a court date for guardianship that very day. He functions at about the level of a 1st grader.

If they are 18, in need of medical care, and REFUSE the care, there is nothing you can do about it without the guardianship or POA. In my son's case, that was sure to happen. He just doesn't understand that he needs whatever treatment it may be and says no (even simple things). Without guardianship, if he refuses treatment, I have no legal say about it, and they have to honor his wishes. He is not mentally capable of making his own decisions.

 

[bookwormde]

Some state have limited gaurdianship so talking to an atty in your state would be best

 

[krisnme]

If they are 18, in need of medical care, and REFUSE the care, there is nothing you can do about it without the guardianship or POA. In my son's case, that was sure to happen. He just doesn't understand that he needs whatever treatment it may be and says no (even simple things). Without guardianship, if he refuses treatment, I have no legal say about it, and they have to honor his wishes. He is not mentally capable of making his own decisions.

The lawyer we visited, a specialist in disability, explained that if the person refused necessary care and has a neurological disability, they would be evaluated to find out if they really understood what they were saying. If it is determined that they are not capeable of making that decision the doctors must refer to next of kin. I actually had to deal with this recently when DS needed care, was panicked and refused. After documenting his disability, I was allowed to give permission for care. It is very much the same principle that allows you to take Grandma with Alzheimers to the ER to treat her broken arm even thou she does not understand what is happening and is demanding that you leave her alone.

 

[of2dbeach]

I have tried through legal aid to get the guardianship here in Fl. they said they stopped doing it after I had a court date pretty much set up. they said they had no funding. not sure what else to do. he is 18 Autistic/ Epileptic. As of now there hasent been any issues but i assume there could be. I heard it costs about $2,000 for guardianship and you need an attorney to do it.As far as a POA I was told if they do not understand what they are signing you cant do it ? not sure how true that is but would like others to chime in because I need help with this also. great topic

 

[krisnme]

I have tried through legal aid to get the guardianship here in Fl. they said they stopped doing it after I had a court date pretty much set up. they said they had no funding. not sure what else to do. he is 18 Autistic/ Epileptic. As of now there hasent been any issues but i assume there could be. I heard it costs about $2,000 for guardianship and you need an attorney to do it.As far as a POA I was told if they do not understand what they are signing you cant do it ? not sure how true that is but would like others to chime in because I need help with this also. great topic

As I understand it, if your child/adult is competely unable to understand and make decisions at all, you can have them declared an "incompetent adult" and therefore be granted POA. Many with Downs children take this route. This should be a simple appearance before a judge with supporting evidence from the Dr. check at the courthouse about doing it yourself, or shop for a lawyer with experience with this. My DS is able to understand his choices, just not always in a frame of mind to make the choice, and understands that he is trusting me to make decisions for him. I also had a problem with insurance when he turned 18 they did not want to talk to me due to privacy issues. They sent me a document to be signed by DS assigning me as his agent, they did not ask if he was competent to sign it.

 

[SueM in MN]

The lawyer we visited, a specialist in disability, explained that if the person refused necessary care and has a neurological disability, they would be evaluated to find out if they really understood what they were saying. If it is determined that they are not capeable of making that decision the doctors must refer to next of kin. I actually had to deal with this recently when DS needed care, was panicked and refused. After documenting his disability, I was allowed to give permission for care. It is very much the same principle that allows you to take Grandma with Alzheimers to the ER to treat her broken arm even thou she does not understand what is happening and is demanding that you leave her alone.

any hospital or caregiver is required to give emergency care, even if the person is not able to give consent.

The issues come up when the care is not really emergency (as in, the person will die without out). If it's not considered emergency, it can take time to get the determination that the person is not capable to make the decision about care.

There are some variations state to state, but there are more options than just total guardianship and the person being capable of making all their own decisions. It goes all the way from someone else, appointed by the court, having total control of all decisions, to limited - such as the person can make all decisions about everything but money.

And, having a guardian doesn't mean that the person has no say at all. They don't have the ability to make the final decision, but the guardian can and usually does take their wishes into account.
I don't know about every state, but in Minnesota, the person has to be notified once a year that thy have the right to ask for guardianship to be revoked if they feel they are able to handle their affairs at that time.

Autism Speaks has a good general page about legal issues:
http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit/legal-matters
They also have some information about individual states and a 'finder' for services in each state. You can find them by searching for "guardian" or "conservator"

 

[SueM in MN]

Forgot to add:
From what I understand, Power of Attorney is a request from a person to have someone else handle their affairs for them. In order to request it, the person must be competent at the time the Power of Attorney was signed.
The reason for signing it is usually so that person can choose who will make decisions for them if they become incompetent or unable to make decisions for themselves. It can be used by someone who is disabled, but only if they are legally competent to sign a legal document or contract. just what 'legally competent' means might vary from state to state.
Many people with high functioning disabilities may be competent to sign, but someone functioning at a 2 or 3 yr old level would not be.

Here's a reference:
http://legal-dictionary.thefreedictionary.com/Power+of+attorney

 

[PatMcDuck]

I got the guardianship done this year, DS is age 21, Downs and Autism. Not really verbal, and does not really understand much about reality..... But I am not 100% sure I HAD to do it, but I guess it is better to be done. MORE important, but still not done, is setting up a special needs trust and fixing our wills. Right now, DH and I have lots of life insurance, and if something happened, he would inherit 1/4 of it, and lose his SSI and health insurance until he spent it all. Then he would be able to go back on SSI and regain it, eventually, but would have no backup trust $$ for his needs. Scary.


It cost me about $4000 total, for the guardianship; here in NJ it is a big complicated thing. Loads of reports, paperwork, 2 doctors had to sign off (the psychiatrist charged $700, the other was filled out "free" from his internal medicine DR).

NJ used to have a program to do it, but the waiting list is so long, he would be in his 30s before we reached the top. They also allowed us to request funding to pay us back for some of the cost if we used a private attorney. However this is a program they approved in Trenton (state capital) but they have not funded it in years. If they ever DO, we may get some of the $$ back. We are on that list. But I am 100% sure they will NEVER fund it. (state is broke, and they like to pass feel good legislation, hold a press conference announcing it, but they just don't fund it! UGH, I hate NJ sometimes!!)

 

[blondietink]

Here in New York State, in our county, it cost $20.00 for legal guardianship. Basically it is the cost of the search through CPS (Child Protective Services). We have a 21 yo with Down syndrome (non-verbal, severe MR), and a 19 yo with classic Autism (functions in mild MR range). Neither of them understands medical stuff. Our guardianship papers are currently in limbo just waiting for the doctor's papers to be completed and the court to deal with them.

We live in a small town, and last year the 21 yo had to have emergency surgery for a hernia that was strangulating his bowel. Anyway, nobody here cared that we weren't his legal guardians yet. The surgeon knew us and knew our son was incapable of making that decision, so we just signed consent for surgery. But, it is my understanding if either of our sons were to require surgery in either Buffalo or Rochester, we would need the legal guardianship papers or would have to go through a hospital committee for approval.

We do have a special needs trusts set up for both of them in our wills. It cost us $800.00 for both of our wills to have the trust set up in them. We also got POA's and health Care Proxy's for both of us included in the price.

We also have gotten a non-drivers ID for both of them and a US Passport (we travel frequently out of the country as we live 30 miles from Canada). Both of these were easy to get, even consdering their disabilities. I really like the passport as on the application you can list emergency contact info., so if either of them were to get in an accident or we were left unable to care for them in a foreign country, there were be emergency info. avaiable for them that others could access.

Good luck.

 

[DVC96]

We did guardianship for our DD last year here in Northern Virginia. We were able to choose which rights we wanted to take away (right to drive, marry, purchase a firearm, vote, etc.). There is also limited guardianship. Should you change your mind, you can petition the court to reinstate a right. Our DD is now 19. We use military medicine, but even with them, they did not want to talk to me to schedule appts., etc. , because she was legally an adult. It did cost us around $2000 for our attorney's fees, but the court appointed an attorney for DD. Our attorney was excellent, as was hers and we are glad we did it as we prepare to make decisions for her future.

 

[mdvlprof]

I once explored guardianship for my DS when he turned 18. The lawyer explained that this would remove his right to make any decisions for himself. As he is HFA and capable of having an opinion and making decisions with guidence, I instead submitted paperwork to the ins. and carry a power of attorney signed by him allowing me to make medical and legal decisions on his behalf. Guardianship is a big step, consult a lawyer. If she is traveling with you and is not able to make emergency medical decisions for herself, the hospital would have you, as next of kin, make those decisions.

POA is what we did, too. Guardianship takes away almost all personhood, legally speaking.

 

[persimmondeb]

Does anyone know if you can get a very limited POA? My DS will be 18 in a year and a half, and should be essentially legally competent, but I wonder a little about complex financial and medical issues. He understands contracts, and certainly if he broke his arm, he'd be able to get it set, understand directions about coming back, taking medicine etcetera, but there are matters that might be difficult for him. Also he's not necessarily that sensible if he's upset, and might prefer if Mommy and Daddy could just make the decision. Not to mention that medical personnel might wonder about the competency of the stuffed animal clutching person asking for his Mommy.

He has no issues signing a POA (and seems to understand what it is), but I don't want to take away his ability to make legal decisions.

 

[SueM in MN]

Yes, you can.
The POA can be for very specific decisions/subjects. It can be very broad and include a lot of items or very narrow and allow him to make decisions about day to day things, but prevent him from entering a contract for big items like buying a car or a house. Medical POA is just for medical decisions.

Even guardianship or conservatorship are not all or none. They can be of the person or of the estate (money).

It's best to contact someone in your state to see just what the rules and definitions for your state are. If he is still in school, they may have a Social Worker or transition specialist who can help you.

I will post more resources later, but here is a link to a good webinar ( you can also view it as a text document and a PowerPoint presentation)
http://www.worksupport.com/training/viewWebcast.cfm/163

 

[persimmondeb]

Thanks, that's good to know! We'll talk to his school about it. I know they have transitional services. He has a fairly sophisticated understanding of most things, but he's very, very childlike, and may always be, so I'm thinking a little bit of a safety net in some situations might not be a bad thing, especially as he gets older and spends more time away from us.

We were watching a show the other night where a young man underwent a very painful bone marrow biopsy, and I could see him refusing it, especially a second time, no matter how dire the consequences were.