Prepare for Guardianship - Down Syndrome Message Board

Royalene · 03-17-2001, 06:12 PM

Please, please all of you out there with a DS child, please plan ahead for their future, when you are unable to care for this child. We have been going through hell because this did not happen in Joeys case. It is such a sad story.
Joey is now 34 years old, and has been living with us, his brother and sister-in-law(me) for over a year now. His Mother died of cancer, refused a will, did not plan any provisions for Joey, nor told us of any. Out of 7 adults in his family, they felt we would be the best place for him. We agreed, but things went down hill after that. The family totally ignores him ( all live in the area). The hardest part for us was that the family didn't want him to have any of the inheritance, unbelievable!!! WE as a family have had to make alot of sacrifices. We love Joey very much, and are trying to teach him what live is all about, having friends, working,etc.
To make this story important to all of you out there is to make sure you plan the future for your DS. YOu would be suprised how feelings change after a death of a loved one.
Royalene

Tifferbelle · 03-17-2001, 08:33 PM

You must be great people! I'm sorry for what you are going through. Where I live in Oregon, we have to be very careful about inheritance laws. If our daughter inherits anything from us she won't qualify for services through the state. For that reason we can't put anything in her name. She is still very young but we have prepared a will and left private instructions for our other daughter as to how she is to handle the inheritance that is to be shared with her sister even though it will be in her name alone. Perhaps since you are your brother-in-laws caregiver your family members would be willing to give you his share to be used for his care. I hope everything turns out well for you. Thank you for caring about other people enough to help them to avoid the problems you have.

Royalene · 03-18-2001, 08:07 AM

Thank you so much for your response. Planning ahead is so very important. I know in our state you can have a special needs fund set up. You can also check this out. It is great you have another sibbling to care for the needs. We had to purchase a larger home, a bed, etc. It is sad because the family, didn't care if Joey slept on the couch. It is great that you have prepared the future, you never know! You don't know what a burden you have lifted from your daughter.

Kennedy · 03-18-2001, 02:28 PM

I am so sorry your family is like that. I mean no offense but that really upsets me that people are so self serving and thoughless towards him. He is a person too breatehs the same air and has the same rights and feelings as they do. My daughter is only 2 1/2 but I am already planning for her. Our parents and dh's sister(loves her) in the event we pass away young will always take her they said and make sure she gets the life she deserves. We are expecting our second and are going to bring that baby up to know that she is his/her sister and that if we are gone they are family no matter what and that comes first. we will make sure they are both taken care of equally and securely no matter what we have to do. We are fortunate she is so very loved be everyone in our family. Again I am so sorry that Joey is treated like that and you must be wonderful people to be so loving and accepting. I hope you will fight to get his share of what he deserves.Hopefully one day they will realize what is really important and how awful they are to act this way.Sorry I get a little to mad lately(hormones). Good luck.

Royalene · 03-19-2001, 09:42 AM

It is alright to get angry!!! Thanks for your uplift. Yes, we just don't understand it just makes us sick to think about it. But Joey has a NEW life now, he doesn't understand why nobody sees him, nor talks to him. But it has been over a year now and has seemed to forget about it, verbily anyway. The estate has not yet been settled yet, we are to know in about one month. keep up the good work and give a hug to your loving family!!