OT:How 2 spend $$ on Autistic child-HELP

[DisneyDreams4P&B]

We got a $1500.00 SSI check for our 6 year old HF Autistic son. We cannot put it into a savings account or college fund for him or we will loose his SSI benefits/medicaid (don't you just love the governments way of thinking??) We are racking our brain as to what we can get for him that would be helpful to him. He has therapy, and we even have made our spare bedroom into a makeshift therapy room. Any ideas??? We were thinking about a laptop (he is very into computers) so he can take it back and forth to school - with programs he can use at home and school and His teacher can put in things for us to do at home and we can load documents we are always needing in there (so we can print them or email them as needed) as well as being able to log his progress at therapies. However I am scared to give such an expensive piece of equipment to a 6 year old and would worry about it getting damaged or stolen - even a decent cheap one we found was $600.00!!!

Anyone been in a similar situation and can give us some advice???

Thanks

 

[joanchris]

We always have a difficult time spending money on our daughter with Rett Syndrome. Is there any activity/lessons he would like (computer class, art lessons, swimming, and the like) that you could spend the money on--and an aide/helper to go with him?
Can it be used for respite services you could find, which would benefit him by making you, as parents, rested and better able to help him?
How about some sort of "cool" bike, or recreation equipment he could use, make a basketball mini court?
Just thinking here, I only have girls, and hate when my nephew's birthdays come along, since I dont' know what to do with boys!
Good luck!

 

[wide awake]

My autistic DS loves music...does your son have CD players for his room and for the car (in case you don't want to listen to his choice) ? Does he have a tv/DVD player for his room. Also, $1500 is enough to go someplace...WDW if you beleive the MYW ads...and you're in Georgia, not too far to drive there. I liked the activity suggestion, another would be trips to the zoo or concerts, dinners out...my DS would eat at a restaurant every night if he had his choice, more expensive than usual clothes...my sister knows DS's tastes, she bought him pajamas at Christmas, $70/pair. You could put it aside and save it for a future treatment or vacation...

 

[minkydog]

I would put it toward something he loves. I don't think it's frivolous to give a 6yo autistic child a laptop at all. With $1500 at your disposal, you could have a nice set-up with extra games, word processing programs, etc., and still have money left for some special activities like hippotherapy or swimming, something a lot of autistic kids enjoy. Good luck deciding

 

[3kidsmommy]

Ok...here is what we did when Chandler got that first SSI check (and congrats for getting it for your ds!)--don't forget you can use that check to pay for his portion of utilities, rent, food, etc. That makes it go away quicker...they will NOT require documentation for a minor of HOW you spend it, only that you didn't SAVE it. We cashed the check and used teh CASH. I documented (just in case) expenses such as electric, gas, food, out to eat, clothing (he got a bunch of new things!) etc. With the excess, I paid off preexisting therapy bills (from before he had Medicaid) and got him his own TV.
Now that your child is getting SSI, I cannot beg you enough to send your paystubs from work MONTHLY to the social security administration. What happened to us, is we weren't told to do that. So, they ended up overpaying us and we had to pay back money to them. Now, I send them stubs from my dh at the end of every month. Or rather, I did do that until he became too disabled with MS to work anymore--now they KNOW what he makes. Watch income closely, because if your child looses SSI for 2 months, he will loose Medicaid 2 months after that. For us, it isn't the check that matters--it is Medicaid. His private insurance pays, then Medicaid and I am not responsible for ANY of his therapy bills. Since he goes 3x a week--that is GREAT. Please feel free to PM me if you need/want to chat about anything regarding this! Tracy

 

[SueM in MN]

Now that your child is getting SSI, I cannot beg you enough to send your paystubs from work MONTHLY to the social security administration. What happened to us, is we weren't told to do that. So, they ended up overpaying us and we had to pay back money to them.

I just wanted to mention (so no one worries) that if you have an adult child who is getting SSI because of a disability, this is not necessary. Their income is what counts and since the only income they have is SSI, your income doesn't matter.

If you do decide to get a computer for him, you can get a rider on your homeowner's or renter's insurance to specifically cover the computer. We did that for DD's computer she uses for talking. It is considerably more expensive (like closer to $5,000); that much coverage costs about $60 a year.

 

[kdtwiss]

I have been looking at something for quite a time called the "Play Attention" system. It really sounds as though itis like a home biofeedback program. It is expensive and would suck up that $$ plus a bit I believ - but it looks like an amazing program/system. HTH

 

[3kidsmommy]

I just wanted to mention (so no one worries) that if you have an adult child who is getting SSI because of a disability, this is not necessary. Their income is what counts and since the only income they have is SSI, your income doesn't matter.

Sue, should have thought to mention that myself! Also, while it is true that if the "child" is an adult getting SSI you don't count the parent's income, you DO have to keep records of how the money is spent then because you are acting on the behalf of the adult child. My friend has to do this for her dd who is severely disabled. When we first started through the whole SSI process, I was misinformed and thought they didn't consider the parent's income even when it was a minor child...found out that they do. They even take into account my other children's child support! Sadly, I am ready to return to work after being in school for 3 years to finish off my degree and I am terrified to go back! If Chandler loses his medicaid, which he will when he loses SSI, he can't get his therapies anymore. I just don't see the good in that. His private insurance pays so little for them that I wouldn't make enough to cover the expense---social work/early childhood education (I have a double major) doesn't pay well. Sometimes I think I would be better off to wait to go back to work until he is 18--that is only 11 years from now!

 

[boosmom96]

If Chandler loses his medicaid, which he will when he loses SSI. . .

I know every state is different, but in CA we have a process that is called "Institutional Deeming". This is how my DD (she's 9) qualifies for MediCal/MediCaid. Basically this means she is eligible to be institutionalized, but we are keeping her at home so the state picks up her medical. This has been a godsend for us because our private insurance has really cut back paying for medical equipment. (Wheelchairs etc.) Family income is not taken into account. I know our DD does not qualify for SSI, so they are not tied in together. Feel free to PM me if you want more info. It may be worth checking into!!

 

[3kidsmommy]

Hi..I know many states have a waiver like that--here in KY we USED to, but they started throwing all the autistic kids OFF it! Now, there is virtually NO way to get the HCB waiver--that is what ours is called. It really is sad. Also, while in school I did a practicum experience with a social services agency that deals with things like this...the lady there said that although an autism consortium was developed and the people in that group were petitioning for standard Medicaid coverage for autistic kids, there had been no luck. She also said that Medicaid KY rules were that Chandler would have to lose coverage before we could start even applying for any waiver programs. Just doesn't seem right. Isn't CA's waiver program referred to as the "Katie Beckett waiver"? Thanks for trying to help--that is so very kind of you!

 

[SueM in MN]

Hi..I know many states have a waiver like that--here in KY we USED to, but they started throwing all the autistic kids OFF it!

All the states have waiver programs of some sort and some are called the Katie Beckett program or waiver after an actual child named Katie Beckett who needed to be on a ventilator. Medicaid or insurance would pay for her care if she remained in the hospital, but not if she was cared for at home. Her parents advocated for her to be able to receive care at home and to have her care paid for by Medicaid (without the availability of Medicaid, they could not have afforded to care for her at home). Because of their advocacy, many other kids have benefitted.
Here's a good website about medical advocacy for children with disabilities that does a good job explaining about the waivers.

This is statement about waivers/Katie Beckett:

The Katie Beckett Program is a special eligibility process that allows certain children with long term disabilities or complex medical needs, living at home with their families, to obtain a Medicaid card.

Children who are not eligible for other Medicaid programs because the income or assets of their parents are too high, may be eligible for Medicaid through the Katie Beckett Program, if they meet all the following eligibility criteria:

The child is under 19 years of age and determined to be disabled by standards n the Social Security Act;

Requires a level of care at home that is typically provided in a hospital or nursing facility;

Can be provided safe and appropriate care in the family home;

As an individual, does not have income or assets in his or her name in excess of the current standards for a child living in an institution; and

Does not incur a cost at home to the Medicaid Program that exceeds the cost Medicaid would pay if the child were in an institution.

In Minnesota, the program is called the TEFRA Program. Only the child's income is looked at to determine eligibility. Because most children don't have many assets, they qualify. But some states (MN included) have a copay, based on income that parents have to pay. A few years ago, they greatly increased the co-pay (to the point that some families could not afford the co-pay).

 

[3kidsmommy]

I am glad to hear that some children still qualify. Out of the support group for parents and families of children with autism I am in (which has members from 25 counties in KY) ALL of the children on the HCB waiver (home and community based waiver) were dropped. They basically made the criteria so the kids couldn't qualify. It really was sad. Now we are just waiting for our wonderful (tongue in cheek here) state legislatures to listen to the autism consortium about how these children NEED services.

 

[D L and K's Mom]

but he is 16 and I was told he is NOT eligable for SSI until he is 18??? I did apply once but DH and I are both teachers and we were told our income is to much...????? Hmmmmm. Should we re-apply? Anyone have any luck. DS is 16 and at the develpmental stage of an 18 month (diapers, non -verbal etc). I end up paying for lots of "Extras" for him....adaptive equipment that insurance does not cover etc.
In reference to the first post one thing we bought that we love is one of those "floating " bathing suits for DS. He loves the water and the suit holds him up enough that he can "Swim" on his own...we sont have to hold him and it is secure so we can swim along side of him. He loves it!!! They are $$. We also bought a large swing for him for the yard, he loves to swing.

 

[JenJen]

Yes you are right SSI is income based if the child is under 18. Right now I am in the process of applying for SSDI for myself which Is a bit differant but you have to have work credits for that. I think that they make it harder for parents that have huge medical expenses and therapies for these children and sometimes I know one parent will quit there job in order to get SSI and Medicaid. You may want to look into The Katie Beckett Program to see if your son can have medicaid and you don't jave to pay for all his meidcal stuff. I wish you the best I know it is hard.

 

[SueM in MN]

but he is 16 and I was told he is NOT eligable for SSI until he is 18??? I did apply once but DH and I are both teachers and we were told our income is to much...????? Hmmmmm.

We didn't bother to apply until DD was 18 because we knew our income was too high.
As Jen-Jen said, SSI is income based (by the parent's income) for children under 18. I would not bother to re-apply until he is over 18. No matter what the needs are, he won't qualify if your income is too high.

I think some of the kids with autism are getting pulled out with this:
Requires a level of care at home that is typically provided in a hospital or nursing facility;
It's pretty easy to see how someone with severe physical needs fits this requirement. It's harder to prove without physical needs.

 

[joanchris]

but he is 16 and I was told he is NOT eligable for SSI until he is 18??? I did apply once but DH and I are both teachers and we were told our income is to much...????? Hmmmmm. Should we re-apply? Anyone have any luck. DS is 16 and at the develpmental stage of an 18 month (diapers, non -verbal etc). I end up paying for lots of "Extras" for him....adaptive equipment that insurance does not cover etc.

It's not SSI that you need to be applying for, depending on your state you may want to see about the medicaid waiver program, it is not dependant on parent's income, though at age 16 there may be a wait list too long to make it worth while.
In some states it is easier to get on the current waiver than in others. As someone else mentioned there should be a version of the Katie Beckett waiver, here it is called the HCB waiver, but the name is changing to something else.......Connecticut lost a lawsuit regarding the long wait list for the waiver and the folks who administer the waiver program here were out the other day to do the yearly paperwork and to switch her over to the new improved waiver that will enable us to get more benefits (like $$ to modify our bathroom to enable us to get a roll in shower etc). That is what is supposed to happen, we'll see if the funds are there when we need them......

Here you must be physically disabled as well as test in the Mod-severe MR range to qualify for the waiver. We got Corinne on it when she turned 3 and aged out of birth to three services, we continue to get PT and OT after school through this, medical co-pays covered, enteral supplies that insurance denies, home health aide coverage (when they can staff us with someone reliable) for 10 hrs/week--we're "entitled" to nursind (since the aide cannot touch the gtube) but in the 7 years we've been getting service we've never been able to get a nurse staffed, not even for a once in a while thing. I think a portion of her wheelchair and stander were paid through this as well.

I know folks in NY state, North Carolina, and WA state who have similar or better waiver services, there are probably other states that have decent medicaid waiver programs as well, that's just where I know people with daughters similar to my own.

 

[prcoamo]

Hi I'm a single mother (NY area) w/ a 6 year HF autistic dd. As has been mentioned SSI is income based (by the parent's income) for children under 18. My salary is in mid-high 30k range. Anyone familiar w/ SSI in NY area? Should I try applying? or will my income be too high even for a single mom (which is just ridiculous in my opinion). She is in a special developmental school, in a HF autistic class, but there are outside programs, activities I would benefit her, however they are expensive.

Thanks

 

[SueM in MN]

Hi I'm a single mother (NY area) w/ a 6 year HF autistic dd. As has been mentioned SSI is income based (by the parent's income) for children under 18. My salary is in mid-high 30k range. Anyone familiar w/ SSI in NY area? Should I try applying? or will my income be too high even for a single mom (which is just ridiculous in my opinion). She is in a special developmental school, in a HF autistic class, but there are outside programs, activities I would benefit her, however they are expensive.

Thanks

SSI is the same where ever you are in the country.
Here's a link to a Social Security Administration booklet about SSI for children. It should have everything you need to know.
The other programs are called different things in different states and work a little different based on what state you live in. You can find out more about that in one of the previous posts I did about Katie Beckett programs.
I believe in New York, it is called the TEFRA program. To get more info/enroll, contact the Social Services Department for your county.

 

[roseprincess]

We got a $1500.00 SSI check for our 6 year old HF Autistic son. We cannot put it into a savings account or college fund for him or we will loose his SSI benefits/medicaid (don't you just love the governments way of thinking??) We are racking our brain as to what we can get for him that would be helpful to him. He has therapy, and we even have made our spare bedroom into a makeshift therapy room. Any ideas??? We were thinking about a laptop (he is very into computers) so he can take it back and forth to school - with programs he can use at home and school and His teacher can put in things for us to do at home and we can load documents we are always needing in there (so we can print them or email them as needed) as well as being able to log his progress at therapies. However I am scared to give such an expensive piece of equipment to a 6 year old and would worry about it getting damaged or stolen - even a decent cheap one we found was $600.00!!!

Anyone been in a similar situation and can give us some advice???

Thanks

I take it your ds just got on SSI or has he been getting it for awhile?
I do suggest to use the money wisely ie, paying medical bills, utility bills, therapies for him,mortgage/rent, clothing, school fees, etc.

There is a slight chance you might get an overpayment letter about a month after getting that check.
In the experience I had for 8 yrs, I always got an overpayment letter, for what reason, I don't know. But I had to literally fight all the time for hte money. My ds is also h.f. autistic, more of aspergers. I never applied for SSI for him. I applied for SSI for my dd when she was an infant, she has a complex heart condition, so she got monthly SSI checks.
My dd's caseworker was the Grinch, literally. She never wanted us to have any checks. Anytime a big SSI check like that amt came to us, she sent overpayment letters. And I had to fight each one big time! Thank God dd is no longer on SSI.
Hopefully you won't have that kind of experience.

Also, you can have a certain amt.total in your bank accts. You will need to ask your ds's SSI caseworker about how much maximum you can have total in all your bank accts you have. Where I live, the total we can have is $5,000. So if you have less than that in the accts total, you can still put money in one of the accts, checking or savings.

Best wishes to you!

Rosemarie

 

[roseprincess]

I forgot to mention in my last post that any kind of SSI check (whether it a backpayment check or a regular monthly check), SS does keep track on how you spend the checks, even the big amt. backpayment checks.
I'm guessing the SSI check you got may be a backpayment of some sort?
If you didn't get a letter from the SS office with it yet, you will. It will say"this check doesn't count towards the resources at this time", but actually the check does. If you end up getting an overpayment letter within the month of that check or the following month, and your fight the overpayment by filling out waiver forms, you have to "prove" with receipts how you spent that check. I had to do this ALL the time, send in waiver forms because of the overpayment letters I got and send in receipts of medical bills, utility bills, mortgage, etc.
Eventually you will need to save receipts and/or write in a journal how you spent the SSI checks. SSI will ask for them on occasion to check to see you are using the checks towards your ds ie. food, shelter, clothing, medical bills, utility bills, mortgage,etc.
That's why SSI sends monthly checks in the first place, so you use the SSI checks wisely on these type of things.
If SSI sees you bought a laptop computer or some other electronic thing that isn't extremely crucial to his health, they may question why you need the money in the first place? At least this is how most(not all) SSI caseworkers think.
They (SSI) have the Big Brother mentality.

Just a comment: when my dd was on SSI, we hardly made ends meet with paying our mortgage, bills, etc.

Rosemarie