Estate Planning with a Special Needs Child

[happily single]

Hi Dis'ers!!!! I am in the process of completing my Estate Planning (Last Will and Testament, Living Will, Special Needs Trust), etc.

I am doing these myself as I am a paralegal, but I have NEVER prepared any estate planning for a parent with a special needs child. Unfortunately my office only handles basic Estate Planning as we primarily handle other aspects of the law.

As background I am the single parent of three children, one of which has PDD/MR

Is there anyone out there willing to share a Special Needs Trust, but more importantly I am looking for suggestions within my Last Will and Testament to specifically request that my son not be placed into residential treatment and remain as drug-free as possible. I have put language into my draft Will, but would like to compare it with what others have done.

Thanks in advance-I did go to Google, but decided I trusted the people on this board much more.

 

[minkydog]

It sounds like you're on the right track. As you know, you don't want to leave any assets in your child's name, especially if they will someday be getting SSDI or Medicare. I"m not sure what the limit is now, but I know there is a cap on what they are allowed to have. I"m sure you've already chosen your guardian(s).

I don't know about putting the "no residential facility" clause in there. Is it realistic to assume that your child will never, ever need the option of a group home? I would think you could make a preferential statement in the will, but whether it would be legally binding, I don't know.

Our son is in a little bit different circumstances. He is 17 and severely mentally handicapped and autistic. He's 6'1" and 135-lb. He has no self-care skill, is incontinent, nonverbal, has seizures and is a flight risk. We really thought we could care for this child, but as he has gotten bigger and we've gotten older we have had to make some difficult decisions. We can barely keep up with him now. We didn't want to have to do it, but we finally had to admit that we can no longer manage him on a daily basis, nor keep him safe. Christian moved to a group home last July.

I have learned to never say never. We don't know what the future holds for our children. I certainly would not have gone this route if my child was at all able to care of himself and communicate. When he was young, I never thought he would need out of home care, but clearly it is a necessity. And it has worked out very well. He lives with a lovely couple who is stronger and healthier than we are (my DH is fully disabled, too.) Christian is happy, going to a nice school, and is a big part of their family. They take him to horseback ridinig, swimming, birthday parties, trips to Walmart to buy toys and snacks that he likes. Christian has a very fulfiled life. We see him as often as we can, sometimes even pick him up from school and take him to his favorite restaurants and play at the park. \

If you have a lawyer friend, ask them about wording your will properly. As you know, all the wording has to be done right so that your will can stand unimpeded.I wish you the best with this.

 

[happily single]

It sounds like you're on the right track. As you know, you don't want to leave any assets in your child's name, especially if they will someday be getting SSDI or Medicare. I"m not sure what the limit is now, but I know there is a cap on what they are allowed to have. I"m sure you've already chosen your guardian(s).

I don't know about putting the "no residential facility" clause in there. Is it realistic to assume that your child will never, ever need the option of a group home? I would think you could make a preferential statement in the will, but whether it would be legally binding, I don't know.

Our son is in a little bit different circumstances. He is 17 and severely mentally handicapped and autistic. He's 6'1" and 135-lb. He has no self-care skill, is incontinent, nonverbal, has seizures and is a flight risk. We really thought we could care for this child, but as he has gotten bigger and we've gotten older we have had to make some difficult decisions. We can barely keep up with him now. We didn't want to have to do it, but we finally had to admit that we can no longer manage him on a daily basis, nor keep him safe. Christian moved to a group home last July.

I have learned to never say never. We don't know what the future holds for our children. I certainly would not have gone this route if my child was at all able to care of himself and communicate. When he was young, I never thought he would need out of home care, but clearly it is a necessity. And it has worked out very well. He lives with a lovely couple who is stronger and healthier than we are (my DH is fully disabled, too.) Christian is happy, going to a nice school, and is a big part of their family. They take him to horseback ridinig, swimming, birthday parties, trips to Walmart to buy toys and snacks that he likes. Christian has a very fulfiled life. We see him as often as we can, sometimes even pick him up from school and take him to his favorite restaurants and play at the park. \

If you have a lawyer friend, ask them about wording your will properly. As you know, all the wording has to be done right so that your will can stand unimpeded.I wish you the best with this.

Thank you so much for the update on Christian. Although I don't often post I do try to follow his antics. I'm soo happy that he is happy with his new home. i remember how difficult it was to find the perfect family for him.

I am not saying my Joe will never go to residential, but if my family (and his Guardian at my death) had their way he would be in residential right now. So I am just hoping to prolong it as long as possible.

I do have a few calls out to attorneys who handle a bit more probate/estate planning than my office does, but I was curious to see how other parents in a similiar situtation handle this.

Best of luck to you and your family!

Thanks again!

 

[Sadie22]

I prepared special needs trusts and guardianship documents and so on. when I performed paralegal work in-office. By all means discuss what other families have done so that you consider more angles that you might have by yourself. Get your thoughts on paper. When you've thought this through as much as you can on your own, I strongly urge you to meet with an estate planning attorney who specializes in this type of work. He or she will know the laws of your area and may bring up scenarios which you have yet to consider. You need to provide for your child in the event of your death, but also in the event of your disability. There is much to consider and the documents and asset titling may differ depending upon what you decide in consultation with your attorney. This is not an area in which you can make guesses and hope it will all work out. The paperwork needs to worded to achieve what you want under the law. Get an expert.

 

[minkydog]

Thank you so much for the update on Christian. Although I don't often post I do try to follow his antics. I'm soo happy that he is happy with his new home. i remember how difficult it was to find the perfect family for him.

I am not saying my Joe will never go to residential, but if my family (and his Guardian at my death) had their way he would be in residential right now. So I am just hoping to prolong it as long as possible.

I do have a few calls out to attorneys who handle a bit more probate/estate planning than my office does, but I was curious to see how other parents in a similiar situtation handle this.

Best of luck to you and your family!

Thanks again!

Then you need to choose your guardian very carefully. I had hoped that Christian would go into one of my sisters' care. She would be good with him. But her husband is the type that has not patience with any disability. She had to be honest about his limits--if Christian was with her, the husband would have him placed within a month.

We elected to have two guardians for Christian, one for his physical needs and one to manage his special needs trust. At the moment, my SIL is the designated guardian of his person. The bank is set up to administer his trust fund. When my DD19 turns 25, Christian's care and keeping will go to her, understanding that he will always live apart from her. I just couldn't do that to my kids, make them fully responsible for his total care. THat's one reason why we pursued the group home issue. To prevent a situation where we die and suddenly Christian has to be snatched up and moved to a bunch of strangers~! I know someone that happened to. She was 58 when her mom died, and I mean this gal was totally shipwrecked. I vowed never to let that happen to my son. But my kids, who are 26 & 19, really do love their brother. DS 26 isn't a nurturer, but DD19 is, which is why we have made her the ultimate guardian. Just gotta get her through college and on her feet first. She's pretty savvy and I know she will see to it that Christian has a warm jacket, dental care, toys, ice cream and plenty of big shoes (he's in a growth spurt again~oy~He's breaking the bank on shoes this fall.)

 

[robinb]

It seems to me that you are attempting to use the law to continue to parent from the grave. Is what you are considering even legal? Can you legally force someone to follow your rules in caring for your disabled child? I mean no disrespect, but why would you choose a guardian for your son who is not on the same page as you are for your son's care? I think you need to select a guardian that you believe will act in your son's best interest.

 

[happily single]

It seems to me that you are attempting to use the law to continue to parent from the grave. Is what you are considering even legal? Can you legally force someone to follow your rules in caring for your disabled child? I mean no disrespect, but why would you choose a guardian for your son who is not on the same page as you are for your son's care? I think you need to select a guardian that you believe will act in your son's best interest.

The purpose of your Last Will and Testament is to put into writing your wishes afer your death. It is my wish that my son remain out of residential housing as long as possible.

Unfortunately I have a very small family and not a lot of friends that would be willing/able to take on my son.