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

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.

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.

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.

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!!

Oh Royalene..I see too much of this and it makes me so crazy !*+%&$@ Wish I had seen this post earlier..It is May now and I wonder how the estate turned out. In Canada you could have fought for Joey's portion to have been given to his brother (your husband) in what is called an Absolute Discretionary Trust. In that way it does not stop the dependent from receiving government assistance to the maximum. God bless you, your husband and family. It is already clear to me which of my adult children will be there for my son and which will not... and I can never feel the same about the latter now. I'm aware that everyone has their own lives and their own problems but when you see more than one sibling... it is a shame that they cannot share the responsibility
,,, and the blessings. I responded to a post just the other day from a young woman who is trying to get her grandmother to make the legal arrangements for her uncle... and the grandmother refuses!!! I'm in my 60's but it needs to be said that some older people have some crazy ideas and have to be confronted and forced to face a reality check. They have to be told that if they love their child at all...they will visit their local organization for referrals to get the best legal advice available. Where I live I believe your brother-in-law with Down syndrome could have had a free lawyer to represent his interests. God love you for being a loving human being. (and you should hear what I'm muttering about your in-laws!)

That is so sad that no one cares. My son is the youngest and all of his older brothers and sisters are fighting over who WILL get guardianship of him. My 13 yr old even said that when she gets married, she is a packaged deal, he comes with her. I am so blessed to have children who want their little brother (he is 11 now) They have never been embarassed or ashamed of him, they would stand up for him if anyone even looked crosseyed at him. I do however still need to get my will in place so the state doesnt take benefits away from him. This is a kick for me to get in gear. Good Luck to you.....

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linda ;-)

An update, the estate in still in probate until September, his mother refused doing a will, so it is taking quite a bit of time. Joey will recieve his part of the estate, because of the program he is on. With this monies, we can set up at least a burial fund. He is unable to have a trust fund, this was to be done, while his mother was still alive. His GAL (guardian at litem) has been working with us on this, no cost to us. Our biggest concern is when Joey does pass on (his health is not good) the monies goes back to the family. It just makes us angry that they could care less about him. I am glad to say that Joey is very happy and thinks he is the luckiest fellow around. We hope someday, the family will come around and realize what they have been doing.