Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Many parents choose guardianship for their child/adult with down syndrome. Thus far (almost 35 years now), we have chosen not to go that route. Janet has a strong sense of self and a strong desire to make as many of her own decisions as possible. We have respected that and do not want her to think that we have taken decision making away from her. At this point, we have no reservations about this. When Janet went through serious medical problems in her late 20's, she was the one who signed for procedures and read what she was given at least as well as we might. It takes continuous work educating her and there are some mistakes, but she negotiates and evenually learns from mistakes. It also places a high premium on our keeping our relationship with Jan on a loving and positive note, even when we aren't happy with what she does. Without credit cards, there have been no financial problems that were beyond her ability to recover. In spite of not being guardians, we have developed a good relationship with the various agencies and people that come together to support her. It is a team effort and will be for the rest of her life. It isn't that we don't work overall on what is best for her. A week or so ago, Jan's life skills counselor left to take another job (at the agency where Jan works as a volunteer). After discussions with Jan, I made the call to the funding agency which pays for this support and conveyed that Janet (with agreement from us) wanted to move her life skills program and most likely keep the same counselor. Last week, we had formal papers for Jan to sign which she put into the mailbox last Sunday. This week we received acknowledgement of the change starting the first of the month. This weekend was a display of independence. Jan was supposed to come home on Friday and go to a costume dance where she would see some of her friends. Instead I had a phone message from her saying that she was staying at work (her volunteer job) for a party they were having and requesting that she spend the weekend on her own .. with a promise to exercise a lot. She called about 9:30 saying that she had just gotten home from the party. She walked the mile home, which is probably OK since it is along two well travelled and lighted roads. Others choose different routes. One young woman a couple of years younger than Jan also lives alone. She and her parents have a limited conservancy that allows any of them to make decisions. That works for them. They, too, did not want to take decision making away from their daughter. Guardianship is not necessary for all of our kids when they become adults even though it may be best for many. Rick ... dad to 34 year old Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 I would think that it wouldn't be so much THAT a parent retains guardianship of the child, but HOW they do it. We would not take away Maverick's ability to make decisions. The important thing is that we would be able to protect him. He would still be thinking for himself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 >I would think that it wouldn't be so much THAT a parent retains >guardianship of the child, but HOW they do it. > > We would not take away Maverick's ability to make decisions. The > important thing is that we would be able to protect him. He would still > be thinking for himself. Years ago, I thought would not need guardianship - but his limitations are pretty evident and he will need someone to make major decisions for him (when to leave school, etc). I still give him choices and help him become independent. The other day he signed himself in at school after being out at a doctor's appointment. He told me to stay put (outside the office door) while he wrote his name on the tardy page. I will have him go to DHHR next year for the annual review. had 2 appointments at KKI last week. He will be going on thyroid meds now, have a sleep study and an echocardiogram. His neurologist picked up a murmur. He's going off the lexapro because it really hasn't helped the OCD symptoms and we are upping the trazadone for sleep. has been seizure free now for 7 months!! YIPPEEEE! No changes in meds there Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Well, this is timely discussion for us too. We are opting so far not to do guardianship, at least not yet-mostly because with Jess still living at home and attending school, there aren't many things that would require one. I've also been told by attn. that undoing a guardianship can be a problem and expensive, so we are kind of wait and seeing. The medical decision making worries me in the event anything serious should pop up, Jess would probably be able to understand enough and want to be well enough that she could sign, but she also hates med procedures. : ( The one thing we did feel we had to do was retain educational decision making via the state's process, but that's more because we don't trust the district than Jess. Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2007 Report Share Posted October 29, 2007 We went through the guardianship process with this last year. There were a variety of reasons we knew that we had to do guardianship vs. other options. 1. is not capable of understanding his choices or of making educated decisions. Cognitively he just isn't at that point. has numerous health issues that he doesn't understand. 2. He lives in an out of home placement. Currently a supported living arrangement with one other fellow (that is another story, how we got there). It would be too easy for a unsavory staff person to steal 's identity or convince him to sign something and it would be very difficult to reverse. Those were the two biggest issues for us. I also have a view of guardianship from my years as a residential case manager. Please, if your child isn't able to make complex medical decisions on his or her own then legally establish someone to make those decisions with and for him or her. In the home I managed two of the women didn't have guardians. One of those women made choices that we as those hired to assist her didn't always agree with and sometimes worried about being safe for her. But, we discussed the options with her, shared our concerns, and she decided. She also didn't have any major medical issues and was cognitively able to understand the concepts of birth control and safe sex, etc. The other woman had a very serious seizure disorder. Her limited cognitive ability prevented her from understanding the risks of having repeated seizures. She agreed to things without understanding them. It was clear that she wasn't understanding the issues and making decisions. Whatever we needed her to do medically we could sit down and if it was the right person she could be talked into whatever we thought was right. This was very scary as staff supporting her because we were making her medical decisions, not her. We approached the county about a guardianship for her so staff weren't placed in that position and so she had someone appointed to look out for her. The reality was that favored staff would still sit down and convince her what needed to be done medically but the real decision was made behind the scenes by her guardian. I hope you all understand that as someone supporting a person with a disability our concerns weren't for convenience or taking away rights, rather making sure that the right person was making the decisions. Karyn ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 What's the difference between guardianship and power of attorney. We just got power of attorney for . Is this okay? Now I'm getting confused. Jackie, mom to DS 20 (TODAY IS HIS BIRTHDAY!), 17, and Bradley 13 -------------- Original message -------------- From: KVanRyzin@... We went through the guardianship process with this last year. There were a variety of reasons we knew that we had to do guardianship vs. other options. 1. is not capable of understanding his choices or of making educated decisions. Cognitively he just isn't at that point. has numerous health issues that he doesn't understand. 2. He lives in an out of home placement. Currently a supported living arrangement with one other fellow (that is another story, how we got there). It would be too easy for a unsavory staff person to steal 's identity or convince him to sign something and it would be very difficult to reverse. Those were the two biggest issues for us. I also have a view of guardianship from my years as a residential case manager. Please, if your child isn't able to make complex medical decisions on his or her own then legally establish someone to make those decisions with and for him or her. In the home I managed two of the women didn't have guardians. One of those women made choices that we as those hired to assist her didn't always agree with and sometimes worried about being safe for her. But, we discussed the options with her, shared our concerns, and she decided. She also didn't have any major medical issues and was cognitively able to understand the concepts of birth control and safe sex, etc. The other woman had a very serious seizure disorder. Her limited cognitive ability prevented her from understanding the risks of having repeated seizures. She agreed to things without understanding them. It was clear that she wasn't understanding the issues and making decisions. Whatever we needed her to do medically we could sit down and if it was the right person she could be talked into whatever we thought was right. This was very scary as staff supporting her because we were making her medical decisions, not her. We approached the county about a guardianship for her so staff weren't placed in that position and so she had someone appointed to look out for her. The reality was that favored staff would still sit down and convince her what needed to be done medically but the real decision was made behind the scenes by her guardian. I hope you all understand that as someone supporting a person with a disability our concerns weren't for convenience or taking away rights, rather making sure that the right person was making the decisions. Karyn ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 My problem with POA (power of attorney) for was that he could revoke it or someone could create a new document that said he revoked it and get him to sign. The reality is that doesn't know what he is or isn't signing so I really didn't feel that covered his needs. Karyn In a message dated 10/30/2007 8:55:03 A.M. Central Daylight Time, jbocci55@... writes: What's the difference between guardianship and power of attorney. We just got power of attorney for . Is this okay? Now I'm getting confused. Jackie, mom to DS 20 (TODAY IS HIS BIRTHDAY!), 17, and Bradley 13 -------------- Original message -------------- From: KVanRyzin@... We went through the guardianship process with this last year. There were a variety of reasons we knew that we had to do guardianship vs. other options. 1. is not capable of understanding his choices or of making educated decisions. Cognitively he just isn't at that point. has numerous health issues that he doesn't understand. 2. He lives in an out of home placement. Currently a supported living arrangement with one other fellow (that is another story, how we got there). It would be too easy for a unsavory staff person to steal 's identity or convince him to sign something and it would be very difficult to reverse. Those were the two biggest issues for us. I also have a view of guardianship from my years as a residential case manager. Please, if your child isn't able to make complex medical decisions on his or her own then legally establish someone to make those decisions with ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
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