Social Security GRIPE!

[3kidsmommy]

Here goes: My dh is newly retired from the state we live in(he worked for the state) on disability retirement and will also be receiving SSDI, social security's disability program you pay in to every month out of your paycheck. Our children, technically, are his stepchildren. My ex is not involved in their lives at all, but does pay child support every month because 1 month not paying would put him at felony offense level (he has a very good job). Well...here is the kicker...my son with autism, Chandler, receives a small SSI check. I got him approved for SSI when I divorced from his father, was a full time student, and needed the help. When dh and I married, I was sure he would get kicked off the rolls, but he didn't---but since they counted my dh's income as Chandler's his check was lowered down to a very small amount. That was FINE. Really, I just wanted medicaid for Chandler because the insurance through my ex didn't cover anything for his therapies, etc. With SSI, he automatically qualified for Medicaid. Well....fast forward to NOW. As I said, my dh is newly retired. His retirement benefit from the state is low...and his SSDI check is only about $30 more. Our income is dropping by a couple of hundred a month. (so glad we got our one WDW trip!!!) Fortunatley we have very little debt, and will survive. Well, we decided to see if the kids and me could get SSDI on dh's record. That is a benefit available to persons receiving SSDI. Well, FIRST, we find out that Chandler is going to LOOSE his SSI even though our income is dropping. This is because Social Security does not take away any of the SSDI income Darrin is receiving...(like they don't count 1/2 of earned income, etc.) So, even though we are making less...Chandler will lose his benefits. FINE...let's see about adding kids and me to Darrin's account. NOPE. They then flip this and say that kids aren't covered because Darrin doesn't provide more than half of their income!!! UMMM..EXCUSE ME! I don't work right now (Darrin needs full time care and insurance will not cover that--and respite is not available for Chandler) and the only income we have is what Darrin receives, child support and Chandler's SSI--which is now GONE. They can count the income against Chandler and take away his SSI, but don't count th eincome FOR the kids on SSDI!!! UGH...once again, screwed by the system! Gotta HATE it. Sorry for the vent, just needed to do it somewhere....

 

[Biscuitsmom31]

Sounds like you're getting a raw deal. My husband told me that there is some sort of caretaker benefit that may be available to you. You might also try talking to a Social Security lawyer (hard to do with no $) but it might be worth it if he/she could help you get your needs met.

 

[3kidsmommy]

The caretakers benefit is what we were trying to get...but it is only for a person who has children 16 and younger...which we do, but because ss says he doesn't provide half of their income...we are not eligible... Gotta love it. Raw deal? Yep---agreed. Still, I am thankful that we ahve what we do...so many other people are much worse off...

 

[mickeyfan2]

Can you go after your ex for more support for the kids. Also doesn't your ex have to carry insurance on the kids?

 

[SueM in MN]

Can you go after your ex for more support for the kids. Also doesn't your ex have to carry insurance on the kids?

That sounds like a good idea.

I don't know what state you are in, but states have some sort of disability law resource that might be helpful (and is no cost). They are federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities.
If you do a google search for disability+law+your state, you should find the one for your area. Even if yout problem is outside the type of situation they assist with, they can help point you in the right direction. We used the one in Minnesota twice - once when our insurance would not cover DD's communication device and once when we felt a car dealership was discriminating against us because we had a wheelchair van.

 

[dzorn]

How old is your son you are trying to get SSI for? In michigan we were told not to even bother until 18 years of age.

 

[Linda Bell]

How old is your son you are trying to get SSI for? In michigan we were told not to even bother until 18 years of age.


I am a single parent. My daughter is 30 and has been getting SSI since she was 21. Even though fragile she was not eligible until she left school at 21. We are in Washington state so YMMV. She has myotonic MD and declining in health. She also gets 204 hours of in home care, medical coupons and 24 hours of respite care. The 204 hours are available to parents if they provide the care. I work in an office 3 days a week and telecommute the other two, so she needs an in home helper. She is also covered by my work insurance as a dependant.

Hours were determined by what she can do for herself and how much assistance she needed by a DSHS case worker and doctor evaluations. She needs help with just about everything so my hours are higher than average. She even needs help with things like coughing.

Her high school special ed teacher helped us set up SSI just prior to her "graduation".

Her DSHS case worker set up the hours when she was about 25 and could no longer care for herself.

I would start with his teacher and DSHS. Social Security never volunteered anything.

Good Luck!
Linda

 

[3kidsmommy]

To answer some questions...Chandler is only 7 and already is on SSI, but will loose it when my dh, his stepfather, begins receiving SSDI next month. That will put our income over the level social security deems as the level requiring SSI funds. My dh will actually be bringing home less money with both the SSDI and the retirement pension from his employer, but the way social security figures things out, Chandler will loose his SSI. This happens because social security does not deduct anything off of the income you get from SSDI, whereas they deduct expenses from "earned" income. They include my dh's income for Chandler's SSI...but they will not allow us to add my children onto dh's SSDI claim (which would up his SSDI check by about $400 a month) because they claim he doesn't provide enough of thier support. My gripe is that IF they count dh's income against Chandler, shouldn't we be allowed to count it FOR him on dh's SSDI claim? Seems a bit ridiculous to me.

 

[mickeyfan2]

My gripe is that IF they count dh's income against Chandler, shouldn't we be allowed to count it FOR him on dh's SSDI claim? Seems a bit ridiculous to me.

Yes it does seem a bit rediculous, but in reality he is the stepdad and you and your ex are Chandler's means of support, so I can see their point too. Try for more child support from his dad.

 

[3kidsmommy]

Yes, he is the stepdad, but they count HIS income when considering Chan's SSI. Why should they be able to count it then (and we ARE fine with that--my dh would do anything for the children) and then say they won't allow him to have the children as his dependants on dh's SSDI claim? Seems like a double standard---basically, his income is good enough to throw Chan off the SSI books (and then off Medicaid--the real issue here--although Chandler HAS private health insurance they DO NOT cover autism services) but he can't then claim the children on HIS SSDI case. Makes no sense at all---seems like they want it both ways.

 

[mickeyfan2]

Makes no sense at all---seems like they want it both ways.

They always so.

But you keep evading the other question of more support. Also could you get a job that will allow you to care for Chandler and DH but also earn a few more dollars?

 

[jojosmom]

This happens to me just about every month. My son receives SSDI because of austim and a mood disorder. He is also 7. When I first applied I was told I make too much money. After they reconsidered it was determined that the months that have 4 weeks Jojo qualifies and the months that have 5 weeks he doesn't qualify The good news is, like the op I mainly need the SSDI for the medical benefits. They do not stop (for whatever reason) the months that he doesn't receive his check.

And, just like the op I actually lost his benefits while I was out on materinty leave! I was making a LOT less money, but they count it differently! This really makes no sense.

It's a wonder why so many people have to lie just to make ends meet!

Good luck, and see if you still qualify then there are only 4 weeks in the month.

 

[3kidsmommy]

I certainly don't mean to "evade" any questions. My child support received is a substantial amount and the courts will NOT order more. I already receive more than anyone I know of...Still, at $100 a week per child, it goes quickly. This includes me paying all copays for medical expenses for the two NOT on medicaid, all extra-curricular activities, everything...their father will not pay a penny more for anything. AS for a job...I actually am graduating in May with my degree in early childhood education...I would LOVE to go back to work!! However, to go back to work, I have to find someone to care for dh and make enough money to cover the autism services my son is currently receiving through medicaid. His private insurance does not cover any of them. So, everything would be out of pocket. Additionally, because I live away from all family, I have the responsibility for the children with pick up and drop off. Bus service is not offered in my area. Closest family is 3 hours away. Did that answer all the questions? Really, I am thankful our situation isn't worse, and I am not searching for answers because there are not any in this particular situation...I just needed to gripe for a bit so that I can let it go and count my losses. ON a positive note, after talking to the Department for Community Based services, it looks like Chandler will be able to get secondary Medicaid even though he won't be on SSI anymore...this is because THEY don't count dh's income, only income I bring in or the child receives (child support). The criteria is also less stringent for a disabled child, apparently. So, she said when I get my cancellation letter to show up and we would go through the paperwork. That is a blessing.

 

[jojosmom]

I forget to add, if you are not seeking money, just services/medical, you should look into the "Katie Beckett Waiver". If you are unfamiliar with this I am sure the Dept of Human Services or your school will have information. This is a program that looks ONLY AT A CHILD'S income in determine elgibility for medical services. Good luck and keep us posted.

PS I know here in Rhode Island I have numerous support services (programs) available which are a wealth of information. there is Parent SUpport Network-I can't remember the others, but maybe your doctor has that information.

 

[3kidsmommy]

jojosmom---I know about Katie Beckett, but we do not have that here in KY. Here we have what is called the HCB waiver or home and community based waiver. KY has done a wonderful job of throwing EVERY autistic child off this waiver--and there is nothing else. Isn't that sad? This was the first program I looked into for Chandler years ago when he was first diagnosed. We were told then that they were revamping the system and that he would not qualify. Since medicaid is left to be run by the states, each state can have different criteria. Still, since it looks like he WILL get medicaid since they only count child support and whatever i make...I feel better. I just WISH I could go back to work, kwim?

 

[SueM in MN]

Katie Beckett (in some states, like MN, it's called the TEFRA program).
For eligibility, they just look at the child's income, and most kids will qualify on income since they don't have any income. But, if the child is eligible, many states then look at the parent's income and charge them a co-pay based on their income. I know a few years ago, Minnesota changed the co-pay, which made many people unable to afford the program any more.

I also have heard on other boards that many parents of children with autism have found their children are no longer covered, depending on what state they live in. When the Katie Beckett program first started, it was because of a little girl who needed to be on a ventilator full time. She would have physically been able to live at home with nursing care. But, the only way to get her care paid for was if she lived in a hospital. The family's problem eventually led to a law that allowed coverage for care in the home when a child required care that otherwise could/would require care in a hospital or skilled nursing facility. When I was in Public Health, kids that we saw who were covered by Katie Beckett were mostly kids with pretty severe physical disabilities. As time went on, some children with autism were also covered, but some states now have pulled back on care for children with autism.

 

[roseprincess]

3kidsmommy-
I can totally understand your vent with the SSI situation for your ds. to you and your family.
My dd was on SSI for quite awhile, she has a heart condition and dev. delays. My ds is h.f. autistic. I never bothered to apply for SSI for ds because my dd was getting an SSI checks monthly. Even tho ds could have been approved for SSI, I didn't bother to do paperwork for him because our SSI caseworker is such a witch! She gave DH and I the hardest time for a few yrs that dd was on SSI. She was very nasty and sent overpayment statements to us at times for no reason. We did everything; ie. sent in dh's paystubs monthly ,sent in bank statements to her every yr when she wanted them,etc. We were approved for the SSI checks every month, but our lovely caseworker didn't think we deserved the checks, seriously! We had the financial reviews all the time. I had to fight hard with her for many yrs. Had to have a meeting with the SSI expert specialist( someone above our caseworker who did the auditing(accounting person) of our case). Dh and I actually won the appeal! (This was without using a lawyer).The SS office actually OWED us money, that our lovely caseworker withheld from us a few yrs. earlier. Now my dh makes more than the cut off for dd's SSI, so we don't get hte SSI checks anymore, which I am glad. And yes, our SSI caseworker STILL works the same cases, office, etc. Nothing has changed in that area. She has been there at that office for many yrs, is what I've been told.

I'm not familiar with SSDI, but you can try to appeal your case and ask for your files to be re-looked at. The social security system for disability is such a crock! I have heard after the fact, from other message boards, that the SSI and SSDI system is so backwards. The more someone needs to be on SSI and SSDI(given you are telling the truth to them always financially), the more SS gives you a hard time that you actually need the money. So, I've been there, done that with them. In general, you have to really perservere with SS.

With your situation, it's possible your other 2 kids are considered income with your ex, since he is paying child support for them and you were married to your ex at one time. I have not been in a situation like that, so I don't know how SSI and SSDI figures income for your other kids. LIke I said before, you can try to reopen your Dh or ds's files and keep fighting with SS.

As of my son with h.f. autism, more on the lines of aspergers, I am very blessed that we live in a school district that does free floortime! Which means, I don't pay out of my pocket. Paid by our taxpayers in our school dist. for the autistic kids in our school dist to have the Greenspan floortime therapies in early childhood. The floortime therapies throughout the yrs. has helped my ds.

Best wishes to you.


Rosemarie

 

[GoofyGolferGirl]

Check with your schools, they usually know the resources you can use.