<p>Yes, and if is indeed a fascinating ride. Glad you weathered yours so well thus far. ;)</p>
<p>My sister has a special needs child. The concern about her future and the financial burden it places on the family can be overwhelming.</p>
<p>My niece just turned 18. She has leukodystrophy. She is a wonderful child but she will never be independent. My sister tells me in the past most children with her disease did not live long. Now they are living longer and longer.</p>
<p>My wife and I are conservators for our daughter. My wife and I had to hire a lawyer to represent us and my daughter had her own lawyer. My wife, my daughter, and myself were all interviewed by a state representative. The person from the state checked us out. Checked out how we treat our daughter. Her living conditions. What my daughter wants etc. California wants people to be as independent as possible. There is a list of items where it is decided who will make the decisions. Health care, jobs. Schooling, marriage, reproductive
rights (very difficult to deal with), dating, money, etc…</p>
<p>In the end my daughter gets to choose who she wants to date and schooling. There is a whole process to go thru before my wife and I were allowed to become conservators. It was weird. We were like on trial. Peope who knew us could object to our becoming conservators. Educators could object. At the end of the process, we were rubber stamped. We did not have to make a court appearance. My lawyer said it was the first time in her career that one of her clients was rubber stamped. That was cool. It cost thousands of dollars to be allowed to become conservators of our own special needs daughter.</p>
<p>I had to look up leukodystrophy. That is a bummer. The football player Jim Kelly had a son that died of that. Tom1944, sorry about your niece. It is progressive. How bad is it right now? I guess it is pretty bad since your niece will never have an independent life.</p>
<p>The problem with these articles about disability funds misuse is that it puts more stress on those who clearly meet the definitions. Some of what families here have to go through to get a frigging handicap sticker for parking is ludicrous, and the time period is often less than 9 months before they have to undergo it again, for an example. It’s maddening that when there are outright problems with the system and wide sweeping reform rules really hurt those who clearly are well within the lines.</p>
<p>Where to draw these lines are problematic because it really is difficult to discern who is disabled enough to get the payment and who is not when one gets to certain categories. How can one do this? To say that others with the same condition have found jobs is not enough. There are those severely disabled who are the exceptions to the rule, who are working and doing well, but to expect everyone to find such employment with such conditions is unreasonable. But there may be more qualifying for disability benefits that we as a country are willing to pay, and to make cuts is going to be very ugly, as people will fight tooth and nail to keep those benefits as they are often what is keeping them afloat.</p>
<p>This is a college board. People are concerned about college costs. In some ways, I smile when I read about college costs. Being responsible for a special needs child is like paying for college every year of a child’s life. Could be 90 years. My wife and I will still be paying when we are dead. I guess that is where our estate will go. Hopefully it will be large enough. It is hard to project 70 years in the future. When you think how much things cost 50 years ago and you project out into the future how much things will cost… a candy bar is going to be 20 bucks in 50 years. I laugh at paying for 4 years of college or 4 years and grad school. Ssi is like getting a partial scholarship.</p>
<p>Yes. That article was really poor. I am reading about the cases and at times deciding who should get what benefit is subjective. Hey. That person isn’t disabled enough. Well… How do you really know that? Well… Sometimes you don’t.</p>
<p>Cptofthehouse, great post.</p>
<p>dstark- my niece has never spoken or walked. She is fed mainly through a feeding tube. She is a wonderful child and brings tremendous joy to her mom, dad and sisters. She knows her family and does have favorite people that she clearly recognizes. She loves People magazine and will go through a stack of magazines until she finds one. She rips up the pages. We have a Christmas grab bag between the cousins and a subscription to People is usual the gift of choice for her. She loves it. She has favorite movies and certain foods. She can operate her Ipad. She will never be independent though.</p>
<p>Tom1944, my heart goes out to your niece, to you, and your family. I have no idea what it is like to have a loved one with that condition, but I think I understand the joy your niece can bring. My daughter changed my life. There is a goodness that comes from people like my daughter, your niece… It is pure.</p>
<p>dstark, so interesting to learn of the conservatorship process in California.</p>
<p>We have guardianship in NJ. Sounds similiar, not sure if it is.
My husband and I had a advocate, our DD had a lawyer and there was a ‘factfinding’ process led by a state representative. We also had to be checked out, have a home visit to ensure our home was adequate, and fill out gobs of paperwork. Because we used the services of a nonprofit group to help us, it was only about $1000 instead of multiple thousands with a private lawyer in our area.</p>
<p>This all culminated in a court appearance- it was not optional.
However, the judge who ran the proceeding was wonderful. Very caring and sensitive to our family and DD. He addressed several questions to her about what guardianship meant and what her wishes were.
Our adult son is also a co-guardian for his sister and had to appear.
That was almost 5 years ago now. DD still replays the details of that day when we drive by the courthouse so it must have made an impression on her!</p>
<p>Musicmom, </p>
<p>One thing we probably did screw up with is we didn’t add a sibling as a conservator. That was smart that you did that.</p>
<p>Some of the memories our kids have is amazing. My daughter loves parties. If I forget a date of a party, she knows. If I can’t remember where I put something, she knows.</p>
<p>dstark, not sure that WE didn’t screw up by including her sibling as co-guardian.</p>
<p>We thought it made sense at the time. Now several parents in similar situations have told us that they were specifically warned NOT to list a sibling. Thought is that after DH and I are gone, ‘they’ (the state, division of human services, whoever) will see that she has a sibling to live with and thus she will not be offered emergency supported housing.
Not sure it is and we are hoping she is situated in some acceptable housing outside our home before we go.
In any case, we are happy that should both of us leave this world, her brother is able and willing to help support her life. Neither he nor we hope she will live WITH him.</p>
<p>She would love to live more independently and group housing might work. The waiting lists are LONG (she is on them at the bottom) and we are not in a position to purchase and staff a house on our own. </p>
<p>I agree the memories are so cool. Our DD has poor short term retrieval of facts and has never committed things like multiplication tables to long term. BUT she can tell whole accurate stories about the people in snapshots from a block party when she was 5.
She cracked her father up recently by naming the last names of some aviation heroes on a TV commercial: Earhardt, Armstong, Aldrin…we had no idea she knew these people.</p>
<p>Soooo much fun mixed in with the struggles and tears.</p>
<p>Well hell- I dont know my times tables & I couldnt tell the difference between a past participle from a 1954 Fender Stratocaster.</p>
<p>I also wouldnt know where my keys were if I didnt have a hook by the front door.</p>
<p>Yeah…</p>
<p>This is amazing…</p>
<p>" BUT she can tell whole accurate stories about the people in snapshots from a block party when she was 5.
She cracked her father up recently by naming the last names of some aviation heroes on a TV commercial: Earhardt, Armstong, Aldrin…we had no idea she knew these people."</p>
<p>Before my daughter was diagnosed…I knew something was not quite right. I had no idea she was disabled.</p>
<p>If I asked her what a cat says, my daughter would say, “Meow”.
If I then asked her immediately after what animal says “Meow”, my daughter would have no clue.</p>
<p>I’m not quite sure what our neighbors have done, but believe they have gifted everything (including their paid off home & all their assets) to their able-bodied S so he will care for his disabled MS brother and the latter can keep his Medicaid and any other federal benefits he is entitled to. They have the expectation that the disabled S will always have a home with the able-bodied S. Not sure that there is anything legal or in writing anywhere and so far it is working well, while all 4 of them are alive.</p>
<p>It is hard to figure out how disabled people who need some support will have living situations that will work. Another friend whose D is special needs is > 18 and I believe the parents think she will always live with them. Don’t believe there is any plan as to what happens when they die, as they are in their early 60s now. She has 3 sibs, but they are all llving their independent lives.</p>
<p>College costs are indeed high, but nothing compared to trying to figure out how your loved ones may need your financial and other support for the rest of their lives, especially when they have expensive special needs and very little low cost options.</p>
<p>Some people with asssets use special needs trusts…</p>
<p>When both parents die, assets are put in the special needs trust. A trustor or trustee, I can never remember, will dole out money as needed to the special needs person. Also, there are instructions on how to invest the money or to buy a condo or whatever…</p>
<p>When my daughter turns 30, she gets that role. I don’t think she is aware of this. Lol. It is not on her mind these days. </p>
<p>[Frequently</a> Asked Questions About Special Needs Trusts](<a href=“Welcome Home! - The National Special Needs Network, Inc.”>Welcome Home! - The National Special Needs Network, Inc.)</p>
<p>“They have the expectation that the disabled S will always have a home with the able-bodied S. Not sure that there is anything legal or in writing anywhere and so far it is working well, while all 4 of them are alive.”</p>
<p>I’ve heard horror stories about what sometimes happens after parents die. Kids changing personalities, overcome by greed. It seems that in these situations where one child is helpless and the other in control, you have to either really trust that child or make sure the will is carefully written.</p>
<p>My friend with the Down’s syndrome kid put all of her life insurance in my name. She didn’t trust jerk ex-husband, and she hadn’t married new husband yet. She knew that no matter what, I would make sure that money went to her kids. But if she dies and it’s still in my name (because really, how often do people change beneficiaries), I suspect there to be an upset husband/ex. It would be a challenge to figure out how to make sure the disabled child can get her share without someone taking advantage of her.</p>
<p>Yes, our neighbors are aware that special needs trusts exist, but have made a conscious choice to give everything outright to the “healthy” S (who currently works “part time” at 7-11, so he’ll take care of his brother. They didn’t want to tie things up in knots and make things tougher for the boys. So far, so good. I have also heard of sad and bad things happening, but also happy ones. Am hoping it will work out well for them, as the family is very nice.</p>
<p>It makes sense to do whatever is possible to give the special needs kid as much as possible, because it’s hard to know how expensive care for the kid will be. Wonder if it might make more sense for your friend to create a special needs trust with the life insurance policy for the Down’s kid. Just a thought.</p>
<p>We established a special needs trust for our DD.
It sits empty for now. When both of us are gone, half our estate goes to our typical DS and the other half goes into DD’s trust.
The trust can be used to provide for DD without disqualifying her eligibility for SSI and Medicaid. </p>
<p>We’ve thought of different options. Like maybe DD’s needs are greater, should we leave more to her? But should DS be penalized and inherit less because he needs less?
Who knows if HE might have greater needs in the future (hoping not).</p>
<p>What do you all think??
It’s kind of like ‘fairness’ between siblings and college costs…do you try to spend equally on each child? Or according to their needs…</p>
<p>We are waiting to see how things go with our young adults–whether D is able to hold a full time job, if S advances in his career as we expect, etc. It is too early for us to KNOW at this point, so we currently have each of them getting 50%, tho we still have get to transfer things into the trusts.</p>
<p>Our special needs trust is empty too. </p>
<p>I have 3 kids. I told my oldest daughter. The youngest with the problems, gets up to a minimum amount. If that is exceeded, then the rest is split a third, third, third. </p>
<p>We will change this overtime if events warrant a change. </p>
<p>I told my oldest you might get nothing. She is ok with it. She knows she is very capable. She should be ok. Same with her brother.</p>