We have a Special Needs Trust for our daughter, Naomi. You NEED to do this, because money in the trust belongs to the child, not you, so has different tax laws and other financial implications. For example, our daughter just turned 18 years old, so she is an adult, and no longer hampered by our assets when qualifying for services. Your child can get SSI support to cover basics, and the trust can be used for extras.

It's not just about the money. We had a horrible time writing a will, because we didn't know whom to assign to our daughter's care and management of her affairs when we are gone. Our friendly neighborhood lawyer practically pounded on us to write it (you never know when you'll exit this plane), so we ended up with a team of three; her sister, who will probably be living overseas, her aunt who lives maybe 100 miles away, and a program at the santa Rosa Exchange Bank where they will oversee the money. So we have caring relatives who aren't exactly local making the big decisions about her welfare, and the local financial program to deal w/ the $$.

Our other tactic is to just not deal with it, quite frankly. I think many parents do this. We are growing older, yes. She is growing older, heavier, with 24/7 needs, yes. She lives at home now. One day she won't be able to live with us. I see no point in getting all wrought up until closer to that time. We've done some casual looking at options, and know that the Regional Center will be an informational resource, also. But for now, given that group homes and agencies change, anyway, we are living one day at a time.

Some may think this is lousy advice. But you need to hear how lots of people do it.

Best,
Lorna

I think the best piece of advice I've heard is really make a plan. This plan includes reviewing the long term needs of your family and your child. Then create a trust--they are not just for the wealthy. An ordinary will cannot cover everything, and may impede your loved one from receiving state or government benefits if money is received in their name. I know my daughter loves her brother, but I believe estate planning should be done to minimize the emotional decisions a sibling needs to make.
Above all make sure that there is good communication with potential caretakers, lawyers and amongst the family. And though we have a difficult time understanding my son's desires now, as he grows older and we know more about what he thinks, his wishes and desires must be incorporated into the plan. Even if a person does not live independently it doesn't mean they don't have opinions, and those opinions should be central to any choices that are made long-term.

I' must have deleted the email or something from the lady who I was emailing about this- personally. Can you please email me again.