I have an honesty question about disability payments...

[amy g.]

When my oldest was diagnosed with Autism, the doctor stressed the need to get her disability once she turned 18 particularly so that she can qualify for Medicaid. Dh asked if he could not just use the diagnosis to keep her on his insurance past the age of 18. Her doctor said that we should do that, but she would still need Medicare to pay for the things that our insurance will not cover.

 

Since then, I have discovered that to qualify, she needs to have less than a certain amount in her name-about $1,000. The rest should be put in a "Special Needs Savings Account" that someone else controls, and can give her money from.

 

I feel very conflicted about this. On the one hand, her disability is hidden, but I really can not see her ever being able to work for anyone but family. She has an incredible work ethic, but her Autism makes her rigid in ways that most bosses would not tolerate. She would also be stressed having to do any job with very much social interaction.

 

On the one hand, I feel like she is a good example of who social security disability was meant to help. On the other hand, putting her money away so she can have assistance seems very much like what we were talking about in the nursing home thread.

 

Right now, Dh and I are in good shape financially. I can not see any way that we would not be able to take care of her, but I have also seem fortunes turn that I would NEVER have expected.

 

I thought I would just wait, and ask her what she wants to do when she gets older, but if she says it's stupid to take money for doing nothing, does she really have the maturity to make that decision?

 

Fortunately, I have a few more years to decide, but I'd like hive opinions to be mulling over.

[Carol in Cal.]

What is going to happen when you're gone? Who will watch out for her? She needs to be well-launched into a program or a plan for her life that runs a bit on auto pilot, because she can't do this for herself reliably. After all, we want to launch all our kids to become independent, but she has to be independent within limits and with some external system to provide for her. So conceptually, to me, this is not about taking money from the government or not, per se; it is about whether you can leave her with her life under some kind of reasonable support and control, as you would any other child.

 

I think that social security disability and Medicare/Medicaid are well used in this kind of situation. And if I were you, I would talk with a lawyer about special needs trusts and what the ins and outs of those are. I have a friend whose son became psychotic during his college years, and it took her a long time to make all the decisions about how to get that kind of trust in place, so having the opportunity to have it set up slowly and carefully seems advantageous to me. In my friend's case, the successor trustee is the young man's sister and he is aware that the trust exists, but it doesn't get funded until my friend's death.

[amy g.]

That is a helpful way for me to think about it. Miss Bossy's Godparents are a lawyer/judge couple. I'll contact them to get a referral for someone who specializes in this area.

[Mary in VA]

There are attorneys who specialize in estate and financial planning for families with special needs children. Decisions you make now can have a huge impact on benefits your daughter may be elligible to receive in the future. There can be all sorts of ramifications to your decisions that you aren't aware of. It would be money well spent to consult one of these attorneys. It would also ease your mind about what it is okay to do.

HTH,

Mary

(Sorry, I didn't see this advice was already given)

Edited June 15, 2009 by Mary in VA

[Tap]

I am not in this position to the extent you are but in a very mild way. DD2 gets a small stipend from the state and Medicaid due to her being a foster child and then becoming our dependent (and us her guardians).

 

On one hand I think, she is my daughter, and don't have to have the support. On the other hand, when the decision was made to accept support it was a 'make it now for the next 18 years' type decision. There are no ways in our state to decline the payment without it being permanent.

 

DD2 has sensory issues and goes to therapy weekly. She was also in behavior therapy, but is one a break for 'good behavior' :0) but will be going in and out of behavior therapy or some other therapy for the rest of her life.

 

Her mother did some drugs while she was pg, and there are some permanent issues as a result.

 

So, while at this moment, my private insurance would pay for her therapy with a reasonable copay, insurance companies are cutting benefits left and right, and raising rates yearly. One of our concerns is if we hadn't agreed to the subsidy and accompanying Medicaid, there could be a day when either our policy will not cover her, or her needs will create a huge financial strain on us to facilitate keeping her a safe person in society. She has huge impulsive, violent tendencies- like her bio-mom- manageable in a 2yo, not in a 15 yo!

 

I feel that you are forecasting this decision based on your current situation and her needs. But, what if something happens to you? Does anyone else know her conditions well enough to advocate a disability claim on her behalf? Could she live on her own? Will you always have to provide housing and transportation for her? If so, those are expenses that are not typical for a parent to expect, and that is one of the reasons I do think you should apply for her. If she will always need support, and not be able to get a living wage job without certain conditions being met....that is what a disability is.

 

If you want to help her maybe you can allow her to get the disability payments, and then have her help the household by paying some expenses once she is 18. You may want to talk to an attorney to see the best way legally to do this, but you may be able to have her write you a check each month for a preset amount, or send a check along with yours to pay each expense so she is learning to pay bills along with you. You can then use the money to find a career path that she will be able to do with or without family support, and pay for her college with the money.

[amy g.]

I really can not see her living alone either. All of the farm animals would be indoors. She would never bathe or wash dishes. I think she would be institutionalized if anyone ever found out.

 

She is so good with the animals. In fact, last week, we had a horrible time with goats sick with pneumonia and entrotoxemia. Miss Good stayed up all night giving injections, and nursing them. No one can believe that we didn't lose a single goat. she is not the kind of person who would just take disability payments and sit on her behind all of the time.

 

Right now, we are in the process of building a dairy where she can work. I'll be their to supervise her. It is really motivating her to work on the areas that she can improve on. You can just see how happy she is when she starts chores. she runs and skips from pen to pen.

 

We will pay her from the dairy, but I doubt she will spend any of it. she truly seems to have no material desires.

 

I also have some natural gas royalties. I thought about leaving her a greater portion than her neurologically typical siblings. I think they would be fine with it, but I can imagine resentment from their future spouses. It just does not seem like a smart thing for me to do.

[mom4him]

When my oldest was diagnosed with Autism, the doctor stressed the need to get her disability once she turned 18 particularly so that she can qualify for Medicaid. Dh asked if he could not just use the diagnosis to keep her on his insurance past the age of 18. Her doctor said that we should do that, but she would still need Medicare to pay for the things that our insurance will not cover.

 

Since then, I have discovered that to qualify, she needs to have less than a certain amount in her name-about $1,000. The rest should be put in a "Special Needs Savings Account" that someone else controls, and can give her money from.

 

I feel very conflicted about this. On the one hand, her disability is hidden, but I really can not see her ever being able to work for anyone but family. She has an incredible work ethic, but her Autism makes her rigid in ways that most bosses would not tolerate. She would also be stressed having to do any job with very much social interaction.

 

On the one hand, I feel like she is a good example of who social security disability was meant to help. On the other hand, putting her money away so she can have assistance seems very much like what we were talking about in the nursing home thread.

 

Right now, Dh and I are in good shape financially. I can not see any way that we would not be able to take care of her, but I have also seem fortunes turn that I would NEVER have expected.

 

I thought I would just wait, and ask her what she wants to do when she gets older, but if she says it's stupid to take money for doing nothing, does she really have the maturity to make that decision?

 

Fortunately, I have a few more years to decide, but I'd like hive opinions to be mulling over.

I would follow this advice. It is legal and I see nothing immoral.

My son is on Social security disablility with medicare. He also works full time. He reports it all and follows all guide lines. If he could survive without the gov. he would but he wouldn't have money to get his medical supplies, keep up his van that he uses to go to work with etc. so he uses it.

[katilac]

When my oldest was diagnosed with Autism, the doctor stressed the need to get her disability once she turned 18 particularly so that she can qualify for Medicaid. Dh asked if he could not just use the diagnosis to keep her on his insurance past the age of 18. Her doctor said that we should do that, but she would still need Medicare to pay for the things that our insurance will not cover.

 

Since then, I have discovered that to qualify, she needs to have less than a certain amount in her name-about $1,000. The rest should be put in a "Special Needs Savings Account" that someone else controls, and can give her money from.

 

I feel very conflicted about this. On the one hand, her disability is hidden, but I really can not see her ever being able to work for anyone but family. She has an incredible work ethic, but her Autism makes her rigid in ways that most bosses would not tolerate. She would also be stressed having to do any job with very much social interaction.

 

On the one hand, I feel like she is a good example of who social security disability was meant to help. On the other hand, putting her money away so she can have assistance seems very much like what we were talking about in the nursing home thread.

 

Right now, Dh and I are in good shape financially. I can not see any way that we would not be able to take care of her, but I have also seem fortunes turn that I would NEVER have expected.

 

I thought I would just wait, and ask her what she wants to do when she gets older, but if she says it's stupid to take money for doing nothing, does she really have the maturity to make that decision?

 

Fortunately, I have a few more years to decide, but I'd like hive opinions to be mulling over.

 

No, it's not like the nursing home thread. A Special Needs Savings Account is a completely open and legal way to protect/control her money. You are not hiding the money, you are not transferring it to a relative - - you are putting it into an account specified for this very purpose.

 

And I would urge you to sign up for everything she is eligible for. If the money isn't needed, you and dd can always pay it forward and help someone else. If it is needed, it might be very difficult to obtain in a timely manner.

[JFSinIL]

First off - does she need a guardian? I am told it is far easier to be declared a guardian before the kid turns 18...guess what is on my to-do list this summer (SillyAutismBoy turns 18 in Sept.)

 

We will still have SAB on our insurance for a few more years, anyway - he will be in school four more years. But we want to get him on SS - he, too, thanks to gifts from relatives over the years has about $3 - 4 thousand in savings bonds or in his saving account (I am on the account, too). We figure once he is 18 we can start charging him rent and then put the rent $$$ as a gift into his special needs trust (oh, gotta set that up, too!!!). We should have cashed his bonds and moved his money into the (not-yet-existing) special needs trust years ago - so may have to wait a few years now to apply for SS. I am still learning all about this stuff, too.

 

I heard about charging rent and sticking the rent money into the trust on our local autism yahoo group. Apparently you can get the maximum amount of SS if you are charging them rent, a portion of the utilities, etc. Most parents, if they really do not NEED the money to help support the kid, use it to fund the trust. I hope we can do that - otherwise that is going to be one tiny trust fund!

 

 

I might add - local special needs lawyers charge about $2 - 3 thousand to set-up the trust. Some of us do not have that kind of money! Lawyer hubby has been trying to find time to make SAB's trust for several years (not his area of law).

Oh, yeah - you have to also tell relatives, etc. not to give or leave you kid money in their will - they need to leave money to the TRUST. Otherwise the ss stops until the excess money is used up.

 

To anyone who may complain - these Trusts are for folks who are UNABLE to work or live independently. If parents who are not themselves wealthy do not look out for these kid's financial needs....when we are old our disabled kids may be street people.

Edited June 15, 2009 by JFSinIL