Re: Thanks to Sara and Louise

[Guest guest]

Thanks to both of you! We have a lot to look over and get ready. It is good to know that we don't have to declare guardianship until they are 18. That gives us a better idea of how independent they will be. Of course Plan A is still to live forever if not longer! :)On a funny side note. We went out to eat last night - something we do rarely but we had lots of snow to shovel afterwards. There is a very nice (fancy) restaurant that make gluten free pizza because it is trendy so we went there. Pizza is the most difficult thing to come by when yeast free, gluten free and dairy free. At the end of the night our waitress hands me a container of chocolate moose cake and said, "I don't know how you do it. Your boys do so well but you must be exhausted. Eat this all by yourself in a moment of quiet because you deserve it." It was really, really nice of her but of course I shared it after all the snow shoveling was completed for good behavior during the snow shoveling! And my husband does a great job so I can't take full credit. When they were 6 and 7 I wasn't sure we would make it to the place where they could handle themselves in a fancy restaurant.Thanks again,Lori

Wonderful information that Louise is sharing folks. We have used much of this over the years.We have just finished writing a trust into which all our possessions have gone (not wealthy folks- house, cars, anything to which we hold deeds, bank accounts, retirement funds ). Thus our executor will not have eto file probate and get appointed, he will just take over. More importantly, any outstanding debts like credit owed will not be able to attach itself via liens to anything we own. Our executor will of course (although he is not obligated by law in our state to do so) will pay off outstanding indebtedness if he chooses. Important to us, it states which of our children get what share of whatever little we leave, and what is to be done re the care for Elie.

Elie does not yet have a special needs trust established by us, but on our death, our executor will establish it for the purpose of Elie to receive funds from our estate and for the funds coming from my husbands pension. We didn't do it at this point because of MONEY. It cost us $3000 to establish the rollover trust, plus about $150 more just to transfer all accounts, deeds, etc to ownership by the trust. It will cost about another $1500 to establish the special needs trust for Elie funds. There is VERY CAREFUL language which must be used - different in each state- as to how and what the funds in the special needs trust can be used for. EX: Werer Elie to be given our house, he could live there. And he could pay the trust rent to live there. He could also own a car (for his use - not because he will ever drive) but were the house sold and the care sold, the money needs to go in the special needs trust for specific uses. The trust cannot payh for anything that his Social Security and MEdicaid waiver pay for - so he could not increase the salary of his staff with that money. HE cannot pay for part of his own health care - only what Medicare/Medicaid will not cover. HE can carry dental insurance and pay for eye care - Medicare and MEdicaid do not cover these things for adults. HE can use the money for travel, special clothes (like ski clothes or winter coat, but there could be questions if he paid for every day clothes out of those funds.

Need I say, we tried to 'do it ourselves' for years. One must not only have an attorney but one who specializes in your state rules for special needs. And Louise is right. Make sure that everyone iinvolved knows your plans - a letter of intent, a diary, a list of physicians currently used, a video, audio tape, what ever it takes to make sure that the people coming after you know what your child wants and needs and likes is vital. And that doesn't need an attorney. We finished the legal part 2 months ago. We have thus far written 2 letters which we appended.

BTW _ our attorney gave us a huge loose leaf with all the info in it. Then he sent the whole document via eemail to our executor (one of our son's) so that he can get aquainted with the contents and have the document in a safe place.

And for new comers - Elie is 26 now.

Hi Lori, Last year we went to a lawyer to restate our trusts and

write ’s special needs trust. Previously over the years we

first wrote our trusts with wills etc and changed them as needed. Last

year we had a lawyer who has a special needs son and his practice is devoted to

helping other parents. When we received our final documents he had included

many forms to use as needed for our son. Below are some websites that

have various articles that can be helpful. Our lawyer Rubin in IL see articles under Resources: http://www.brianrubin.com/ On ’s site under Resources is the Special Needs

Alliance where you can sign up for their newsletter that gives you info on

various topics. Special Needs Alliance website: http://www.specialneedsalliance.org/home

Various topics and seminars throughout the country. Another lawyer Teri Varnet see under Estate Planning Topics

and Articles and Publications: http://ssvlegal.com/

Both Teri and give seminars as you can see on their

websites. The National Special Needs Network Inc: http://www.nsnn.com/default.htm IPADD yahoo group IL Parents of Adults with DD: http://health.groups.yahoo.com/group/IPADDUnite/?yguid=186738504

Under Files then under Will, Letters of Intent, Trusts, Guardianship

you will find various topics where Rubin and others have posted including

Mark who wrote a book, see below. Planning for the Future, Providing a Meaningful Life for the

Child With a Disability After Your Death. Mark

et allhttp://www.barnesandnoble.com/w/planning-for-the-future-l-mark-russell/1000036833

You may find this book on other sites or in your local

library or get it through library loan. I had the book early on and it is

very helpful, from it I wrote ’s Life Plan, Letter of Intent and

Emergency Information. All the information may seem overwhelming but take it slow,

scan over it and pick what you can use. Writing a Life Plan and Letter of

Intent for anyone to follow after us is very important. It will have all

the information about the parents and child that the person would need and about

what we want for our child from the basic re what clothes and other things they

like to where we would like for them to live etc. Good luck. Louise, Mom to 49, DS, Hearing Impaired, ASD and other

various medical diagnoses in IL

Guardianship question

Posted by:

"Lori " uccpowell@...

loripowell95

Fri Jan 20, 2012

3:09 pm (PST) Hi All:

Back when I worked with adults with intellectual disabilities we tried very

hard to support individuals who retained guardianship over themselves -

meaning, they had no guardian. Did they meet the criteria? Only with support -

by being involved in our programs they did not need a guardian. I always

thought this was the preferred way of doing things.

My DH and I met with the attorney to do wills today - a person who is both an

attorney and a social worker and she believes that ALL people with an

intellectual disability need a guardian though some might only need a guardian

over financial matters. Can any of you send me to a good website or article to

read up on this?

One of the things my husband and I both agree on is that when you have a 13

year old and a 15 year old it is really hard to plan because we don't really

know what they will be like at 18 or 26 or 30.

Any thoughts would be appreciated.

Thanks,

Lori

Mom to Isaac 15 and Tony 13

-- Sara- different pathways lead to Nirvana.