OT- Autism

[LastPommerFan]

I wouldn't hold your breath.

 

Govtrack.us has it at 62% chance of passing.

 

 

And here is the toxic pill in the language: "Those receiving Supplemental Security Income (SSI) from Social Security shall have those payments suspended while maintaining excess resources in an ABLE account."

 

So you save at the peril of your SSI.

 

After a compromise reached earlier this month last month, they only cut the SSI (and it's SSI disability, not traditional Social Security) for accounts above $100k and exempted the accounts for Medicaid means testing with no cap. This might actually work. Debate in the house just finished up. Vote coming soon. Identical senate bill has also cleared committee.

Edited December 3, 2014 by Glass Case Of Emotion

[LastPommerFan]

Passed the house 404-17 :D on to the Senate today.

 

Also yesterday, The Kirch Center at Galisano Children's Hospital finally scheduled us in for an appointment, after 7 MONTHS of paperwork wrangling.

 

It was a good day.

[Sabres Fan in NS]

Passed the house 404-17 :D on to the Senate today.

 

Also yesterday, The Kirch Center at Galisano Children's Hospital finally scheduled us in for an appointment, after 7 MONTHS of paperwork wrangling.

 

It was a good day.

 

This is the best news I have heard in some time.

[wjag]

 

 

After a compromise reached earlier this month last month, they only cut the SSI (and it's SSI disability, not traditional Social Security) for accounts above $100k and exempted the accounts for Medicaid means testing with no cap. This might actually work. Debate in the house just finished up. Vote coming soon. Identical senate bill has also cleared committee.

 

100k is a drop in the bucket when you are talking long term care. I guess you can always shelter in a special needs trust too. Except those will cost you 5-7k to set up.

 

I'll reserve any judgement until I can read the full text.

Edited December 4, 2014 by wjag

[LastPommerFan]

House - Check

Senate - Check

President - Check

 

The Bill is now Law.

[darksabre]

House - Check

Senate - Check

President - Check

 

The Bill is now Law.

 

:beer:

[wjag]

Anyone have any direct experience, good, bad, indifferent, to opening an ABLE account?  Need to do one this week and there just isn't a lot of objective advice out there on this...

[SwampD]

Anyone have any direct experience, good, bad, indifferent, to opening an ABLE account?  Need to do one this week and there just isn't a lot of objective advice out there on this...

Thanks for bringing this up again. I've been meaning to look into this more.

 

We set up a Special Needs Trust pretty early on, and all the sites I've been looking at are all about ABLE accounts vs SNTs. I've been wondering if they both might be useful for different things. Can't really find anything, though.

[wjag]

Thanks for bringing this up again. I've been meaning to look into this more.

 

We set up a Special Needs Trust pretty early on, and all the sites I've been looking at are all about ABLE accounts vs SNTs. I've been wondering if they both might be useful for different things. Can't really find anything, though.

 

We have a SNT also.  We are a few years ahead of you in this, age wise of our children.  My son, now 18, looks like he will get approved for SSDI.  A small miracle as we did this on our own, without legal assistance (although we did have legal assistance for the SNT).  The ABLE account allows you to save up to 100K for their needs.  And unlike a SNT, the money is theirs.  If you leave money in a SNT, upon their death it reverts to the state.  So we can take his SSDI, charge him room and board, and then dump that money in the ABLE account.  The downside for us is that the SSDI is taxable to him (us) and the room and board is taxable on us.  So in effect, we pay tax twice on that money, which ends up in his ABLE account. 

 

The big reason for doing the ABLE account is that it does not get needs tested when qualifying for SSDI, medicare, etc.  The system is crazy.  If we don't charge him room and board, then his potential 733/mo gets reduced by 233 dollars.   If we do charge him room and board, he may get the full 733 but we get double tapped on the taxes.  Money in the ABLE account also accrues interest tax free.

 

Anyone feel free to correct this..  I am still learning/navigating through this gauntlet. 

Edited November 15, 2016 by wjag

[SwampD]

We have a SNT also.  We are a few years ahead of you in this, age wise of our children.  My son, now 18, looks like he will get approved for SSDI.  A small miracle as we did this on our own, without legal assistance (although we did have legal assistance for the SNT).  The ABLE account allows you to save up to 100K for their needs.  And unlike a SNT, the money is theirs.  If you leave money in a SNT, upon their death it reverts to the state.  So we can take his SSDI, charge him room and board, and then dump that money in the ABLE account.  The downside for us is that the SSDI is taxable to him (us) and the room and board is taxable on us.  So in effect, we pay tax twice on that money, which ends up in his ABLE account. 

 

The big reason for doing the ABLE account is that it does not get needs tested when qualifying for SSDI, medicare, etc.  The system is crazy.  If we don't charge him room and board, then his potential 733/mo gets reduced by 233 dollars.   If we do charge him room and board, he may get the full 733 but we get double tapped on the taxes.  Money in the ABLE account also accrues interest tax free.

 

Anyone feel free to correct this..  I am still learning/navigating through this gauntlet. 

I don't believe this is accurate. In fact, I think the state gets reimbursed upon death from an ABLE account first, and then goes to probate. It can be a long and expensive prossess before heirs get money. That doesn't happen with a SNT.

[wjag]

I don't believe this is accurate. In fact, I think the state gets reimbursed upon death from an ABLE account first, and then goes to probate. It can be a long and expensive prossess before heirs get money. That doesn't happen with a SNT.

 

 

I think I am right.

 

from:

 

http://www.naylaw.com/blog/what-happens-when-the-beneficiary-of-a-special-needs-trust-passes-away-special-needs-planning-attorney-portland-oregon/

 

"When a beneficiary passes away, the Trust document will set forth what happens next.  The person(s) or charitable organization(s) named to receive the remaining funds in the Trust are referred to as the “remainder beneficiaries.”  In the case of a Special Needs Trust, the state that provided the beneficiary with benefits must be paid first. The Trustee (the person managing the Trust) should review the Trust document carefully and confer with a lawyer to assist in performing the duties prescribed in the Trust and under state law.  In Oregon, the Trustee has a duty to notify the remainder beneficiaries of the existence of the Trust, provide a copy of the Trust to them and account for all Trust assets.  Generally, the Trust will instruct the Trustee to first pay the last expenses of the beneficiary and of the Trust administration (such as taxes, tax preparation fees, attorney fees).  Sometimes the Trust document will instruct the Trustee to wait for a certain period of time before distributing the Trust assets to the remainder beneficiary(ies).  After the bills are paid and the waiting period has lapsed, the Trustee must distribute the assets in an expedient manner."

[spndnchz]

I think I am right.

 

from:

 

http://www.naylaw.com/blog/what-happens-when-the-beneficiary-of-a-special-needs-trust-passes-away-special-needs-planning-attorney-portland-oregon/

 

"When a beneficiary passes away, the Trust document will set forth what happens next.  The person(s) or charitable organization(s) named to receive the remaining funds in the Trust are referred to as the “remainder beneficiaries.”  In the case of a Special Needs Trust, the state that provided the beneficiary with benefits must be paid first. The Trustee (the person managing the Trust) should review the Trust document carefully and confer with a lawyer to assist in performing the duties prescribed in the Trust and under state law.  In Oregon, the Trustee has a duty to notify the remainder beneficiaries of the existence of the Trust, provide a copy of the Trust to them and account for all Trust assets.  Generally, the Trust will instruct the Trustee to first pay the last expenses of the beneficiary and of the Trust administration (such as taxes, tax preparation fees, attorney fees).  Sometimes the Trust document will instruct the Trustee to wait for a certain period of time before distributing the Trust assets to the remainder beneficiary(ies).  After the bills are paid and the waiting period has lapsed, the Trustee must distribute the assets in an expedient manner."

 

Depends where the asset that is in the trust came from.

[SwampD]

I think I am right.

 

from:

 

http://www.naylaw.com/blog/what-happens-when-the-beneficiary-of-a-special-needs-trust-passes-away-special-needs-planning-attorney-portland-oregon/

 

"When a beneficiary passes away, the Trust document will set forth what happens next.  The person(s) or charitable organization(s) named to receive the remaining funds in the Trust are referred to as the “remainder beneficiaries.”  In the case of a Special Needs Trust, the state that provided the beneficiary with benefits must be paid first. The Trustee (the person managing the Trust) should review the Trust document carefully and confer with a lawyer to assist in performing the duties prescribed in the Trust and under state law.  In Oregon, the Trustee has a duty to notify the remainder beneficiaries of the existence of the Trust, provide a copy of the Trust to them and account for all Trust assets.  Generally, the Trust will instruct the Trustee to first pay the last expenses of the beneficiary and of the Trust administration (such as taxes, tax preparation fees, attorney fees).  Sometimes the Trust document will instruct the Trustee to wait for a certain period of time before distributing the Trust assets to the remainder beneficiary(ies).  After the bills are paid and the waiting period has lapsed, the Trustee must distribute the assets in an expedient manner."

Yes. that is correct, but that is in the case of outstanding debts. As is the case with any trust.

 

I'm pretty sure, though, that with an ABLE account, whatever is left in the account upon death actually has to go towards paying back the state for benefits handed out, not just outstanding debts.

 

EDIT: Actually you are right, but it depends on what kind of trust you get. We set ours up not as a Medicaid Payback Trust so I never really thought about it. Our lawyer was really good. Talk about being ahead of the game, his brother is special needs and in his 40s.

You've obviously looked into this more than I have. Do you see a benefit in having both?

Edited November 15, 2016 by SwampD

[wjag]

Depends where the asset that is in the trust came from.

 

 

Could you be more specific?

 

I was pretty sure when our lawyer set this up, she told us that since my son gets state medical insurance, that they expect to sweep up any assets left in this account, so don't leave any appreciable balance in there.

 

This money comes from family donations and insurance. 

[spndnchz]

Could you be more specific?

 

I was pretty sure when our lawyer set this up, she told us that since my son gets state medical insurance, that they expect to sweep up any assets left in this account, so don't leave any appreciable balance in there.

 

This money comes from family donations and insurance. 

 

I'm not familiar with your State if they implement OBRA '93 or not. I'd re-ask your lawyer.

[SwampD]

I'm not familiar with your State if they implement OBRA '93 or not. I'd re-ask your lawyer.

Yeah. I'm thinking we're going to have a meeting with ours soon.

[North Buffalo]

Thanks for all the info... my now 10 year old will qualify at some point,  we need a lawyer to help us and I have a name... been dragging my feet thinking I should wait until he is 18, but starting to save for him and my Dad is putting a small Trust together for him.  He has a rare neurological disorder and will need help the rest of his life.    This thread gives me some things to start working on now... Thanks.

[SwampD]

Not sure if anyone cares or will even find this interesting, but I kinda want to put this out there, anyway.

 

My wife and I went to a new dispensary today. It was 2 hours away and totally worth the trip. It was so nice to feel like we were actually getting medicine from a medical facility. Our old dispensary kinda felt like we were just getting pot from a bunch of stealth hippies who felt like they were pulling something over on the gub'ment.

 

In the past few weeks, I have watched my daughter hit herself in the head more than 1000 a day (I counted). It got so bad that we had to buy her 2 helmets, one for school and one for home, so she wouldn't concuss herself (something she did in February). While Autism is not yet on the list of conditions that Drs can prescribe MMJ for in NJ, we are "lucky" enough to get it for my daughter for her seizures. If we happen to get some off label benefits from it, well then fantastic.

 

In the past, I have had to spend days in Walter White conditions, basically trying to turn bags of weed into medicine, not knowing the potency or efficacy of what I had made. Today, on the way home, We gave her a single dose of pre-made, tested oil,… medicine.

 

She hit her head four times the rest of the day. Four.

 

We have hope again. It's a good day.

[LGR4GM]

I'm happy the medicine helps. Sucks you gotta drive 2 hours. You're some good people.

[inkman]

Not sure if anyone cares or will even find this interesting, but I kinda want to put this out there, anyway.

 

My wife and I went to a new dispensary today. It was 2 hours away and totally worth the trip. It was so nice to feel like we were actually getting medicine from a medical facility. Our old dispensary kinda felt like we were just getting pot from a bunch of stealth hippies who felt like they were pulling something over on the gub'ment.

 

In the past few weeks, I have watched my daughter hit herself in the head more than 1000 a day (I counted). It got so bad that we had to buy her 2 helmets, one for school and one for home, so she wouldn't concuss herself (something she did in February). While Autism is not yet on the list of conditions that Drs can prescribe MMJ for in NJ, we are "lucky" enough to get it for my daughter for her seizures. If we happen to get some off label benefits from it, well then fantastic.

 

In the past, I have had to spend days in Walter White conditions, basically trying to turn bags of weed into medicine, not knowing the potency or efficacy of what I had made. Today, on the way home, We gave her a single dose of pre-made, tested oil,… medicine.

 

She hit her head four times the rest of the day. Four.

 

We have hope again. It's a good day.

Awesome

[Doohicksie]

Not sure if anyone cares or will even find this interesting, but I kinda want to put this out there, anyway.

 

Come on, are you kidding?  Great story, great news for your daughter.

[dudacek]

It's posts like Swamp's that make me wish we had a like button

[Eleven]

Great news, swamp

[SwampD]

Thanks, all. And Doohickie, it seems like all my wife and I do is talk about our daughter, I just figured everyone else is as bored with the topic as I am. :lol:

 

Day two and we really can't believe the results. We hid the helmets. Out of sight, out of mind. We don't want to remind her why she needed them and so far so good. There are also a bunch of other behaviors, too numerous to list, that are all lessened, if not gone altogether. I'm always skeptical of anything new we try and I really wasn't expecting anything. We're kinda dumbstruck.

[Weave]

Swamp, Im glad this is working for you guys. It is ridiculous that stuff like this was underground for so long.