Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 We need to be very careful about the money issue. Remember that if we leave the money to a sib for the use of the disabled person, the sib pays taxes on it, it becomes part of the sibs money and can be taken thru divorce, IRS manuevers, and thru inheritance if, G-d forbid something wwere tohappen to the sib. Be very careful. This past week, the direcotr of ELie's day hab program lectured me on the need to set up a " testementaary trust " in stead of a special needs trust. His argument is that MEdicaaid could take the pbalance of t he special nees trust when the disabled person dies. In my case that won;t be an issue as it will be funded thru a lifetime pension. When Elie dies, the pension funding the trust will die. BUt getting a trustee for the funds - however the funds are themselves structured is another issue. While our plan is NOT for Elie to live with his sibs, 2 of his sibs are currently standing in waiting as his guardians in our place. I have also been told that there should be one trustee making final decsions to prevent arguments. That another trustee could be advisory. (Can't see where there will be a difference if they are going to argue!!!) > <<I guess I just dislike when people have narrow thoughts about group > homes and preconceived predjudices for parents of a 15 year old and > what we should probably be thinking about for our disabled son.>> > > Hi, Everyone......Just getting caught up here but wanted to comment on a > few > things. > Jean....I have been told that if we buy a small home with 2-3 bedrooms for > > Gareth, the State would provide staff to help out. I would love for him to > > have others like him living with him....not as a requirement, but because > his > best friend now is another DS kid. His other 'buddy' is a girl in a > wheelchair. Like Sara said, many people group together because of their > likes > (religion, polititcs, ethnic) and I see no difference for Gareth. I don't > find it > offensive at all. A home in a community with normal families around would > be > enough integration for me. > > If one talks to any lawyer, they will tell you NOT to expect your normal > kids to take care of disabled siblings.....the underling resentment may > manifest > it's ugly head years down the road. Also, we all want to believe that our > normal kids are as loving and compassionate as we are, but when they have > all > the money and are suppose to share and take care of their disabled > siblings.....well.....once again, the reality MAY occur that they don't > care to take on > that responsibility. If a normal sibling has all the money and marries a > 'money hungry/high maintenance' individual....do you think that person is > going > to care about your child? If a normal sibling has all the money and runs > into financial/medical issues of their own, where do you think the money > will go > first? The best route is to plan for your child's future > yourself....housing > and money wise....and then, pray that your normal siblings will remain in > their lives for support......without the guilt of " HAVE TO " be there. Does > > that make sense? > > <<But I thought I heard lately that age does not matter for a woman to > pass > on DS.>> > ....a woman CAN NOT pass down DS. It occurs spontaneously after > conception. Technically, a woman at age 18 can have a DS child just as > easily as a > woman over 35. > > <<Andy always gets a chuckle out of how far we drove to go to the first > (and > last at this point) picnic there in PA. I have such fond > memories > of that picnic>> > > Louise...I am ready to host another if families are ready. I would be our > home by summertime and State College is right off of RT 80 in central Pa. > If > I could convince the Lifelinks teacher to get involved, then we could have > > plenty of 'mentors' to help with the kids......assuming there are any here > > through the summer months. Also, SC has more than one hotel for people to > choose > from!!! As for the conference, I am still thinking about it. Maybe, DH > could get me a ticket from his frequent flyer acct. > > Amber....sorry to hear about your daughter's seizures. If they happen so > quickly, it's quite possible that all of our kids have them and we never > know. > I know that Gareth use to get that 'unresponsive, zoned out, far off look' > > but I never suspected seizures. Haven't seen any in years, though. The > problem is he wouldn't know if he had one to tell anyone about it. > > Sherry....I printed that off and told my sister to RUN it to her DH's > doctors. He was dx'd in Dec with AD. I am all for giving something a shot > one > time.....especially with something like AD. Gareth has never had a TNF > drawn that > I know of. It's an interesting idea, though. > > Take care, Everyone. > Margaret > > **************Start the year off right. Easy ways to stay in shape. > http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 > > Quote Link to comment Share on other sites More sharing options...
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