Re: The Social Security Battle Continues

[Guest guest]

>Then to top it all off we were at Wal-Mart and some lady

>who works there looked at Isa riding in the Wal-Mart wheelchair and

>said, " What happened to you? " She started to cry and said that the

>lady hurt her heart. What do you do???

What is it with Walmart employees?? I recently had a cashier to ask me if my

family had been in a car wreck. I just stared at her.

Cheri

[Guest guest]

Hi Sharon,

I know how frustrating it is dealing with Social Security. It's nice

that you had someone actually helping you though. I don't know what kind

of records you have or what access you have to docs at the present moment,

but you need to get at least one to detail in a report exactly how

Isabelle's disease affects her daily living. It has to have a pretty severe

impact. For example, can she feed, bathe, or dress herself? Can she

talk/walk? SS looks for things that the person can't do on their own that

deals with self-help skills. They also look a things that may severely

limit her such as mental capacity, prospects for a job (I know she's young

), and things like that. Have you looked at this page at all? Maybe it

could be helpful.

http://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm

Also, here is a definition I found on the SSA website:

Definition of Disability

For all individuals applying for disability benefits under title II, and for

adults applying under title XVI, the definition of disability is the same.

The law defines disability as the inability to engage in any substantial

gainful activity by reason of any medically determinable physical or mental

impairment(s) which can be expected to result in death or which has lasted

or can be expected to last for a continuous period of not less than 12

months.

I wish I could help you more. Be sure if they do actually deny you

benefits, you file an appeal immediately if not sooner! Many times

people win on appeal. Just try to get as much documentation as you can.

Good luck...

Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube,

w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

http://u2.lvcm.com/jscb

[Guest guest]

Sharon, Sorry to hear about your frustrations with SSI, I think the whole

system is set up to be that way! When Chelsea first started early

intervention, the social worker encouraged me to apply for SSI. What he told

me is that the system is set up to be very difficult, a result of abuses to

the system. He told me I would get denied the first time and probably the

second and third. He said to keep trying and eventually persistance will get

results.

But it is very frustrating, I have applied once and was denied. I spent a lot

of time organizing all of Chelsea's paperwork, so I could show them that she

is indeed severely impaired, she was even with me at the interview. All the

SSI lady did was look at the tax form and said we made too much thank you for

your time. It felt like such a waste, I haven't tried again, but I know I

should.

Give your daughter a big hug for me, I get sooo sick of insensitive people!

e, Chelsea's mom(non-specific mito)

[Guest guest]

Krystena,

We to have tried to get disability for . The first time Tommie was retire and they said we could not get it because he had a steady income. The second time after he had gone back to work because of the high medical expenses they told us we make to much money.

I to think it is so unfair. If anyone out there knows something that can help us I sure hope they will take the time to share.

horsley

Re: The Social Security Battle Continues

We have signed up for Caden's disability. Not completely finished with paper work, but am kinda hesitant about even completing the rest of the forms. I already know we make too much money. Still, I don't see how that could keep him from receiving his disability...I know it does though. I think no matter what the parents make, the child (if entitled) should receive their compensation for their disability! Right?

If we had a million dollars (which we don't), so what, right? Caden cannot help the fact that his parents work and are able to make money. That does not mean that he will be able to. He is his own person. I get so upset thinking about how the system works.

The compensation he could receive, could go into a college fund or money for his future living arrangements.

We (the parents) are not the ones applying for "ourselves"....

The child is not making any money but his food costs soooooo much more than regular food. It would be nice for help with that food. $$

I just think that if you are disabled you should be able to receive your SSI no matter what.

Just because the parents have enough money to live, does that mean the child's disability doesn't exist or goes away????? I don't think so.

I hate to tell them that no matter what we earn, his disability is still with him and he is an individual and has individual based needs.

I am so on your side about this SSI situation. I have all of the forms laying here but dont feel like wasting my time because the laws is.... what the law is.... No changing it when it comes to the money issue.

If you are under the income limit, I do believe after several denials and appeals, you will receive it eventually. I know people who have.

If anyone has received SSI for their child who has been over the income bracket please let me know.....

Thanks for listening to my raving!

Bye!

Krystena s

Caden Glutaric Acidemia II

Please contact mito-owner with any problems or questions.

[Guest guest]

We have signed up for Caden's disability. Not completely finished with paper work, but am kinda hesitant about even completing the rest of the forms. I already know we make too much money. Still, I don't see how that could keep him from receiving his disability...I know it does though. I think no matter what the parents make, the child (if entitled) should receive their compensation for their disability! Right?

If we had a million dollars (which we don't), so what, right? Caden cannot help the fact that his parents work and are able to make money. That does not mean that he will be able to. He is his own person. I get so upset thinking about how the system works.

The compensation he could receive, could go into a college fund or money for his future living arrangements.

We (the parents) are not the ones applying for "ourselves"....

The child is not making any money but his food costs soooooo much more than regular food. It would be nice for help with that food. $$

I just think that if you are disabled you should be able to receive your SSI no matter what.

Just because the parents have enough money to live, does that mean the child's disability doesn't exist or goes away????? I don't think so.

I hate to tell them that no matter what we earn, his disability is still with him and he is an individual and has individual based needs.

I am so on your side about this SSI situation. I have all of the forms laying here but dont feel like wasting my time because the laws is.... what the law is.... No changing it when it comes to the money issue.

If you are under the income limit, I do believe after several denials and appeals, you will receive it eventually. I know people who have.

If anyone has received SSI for their child who has been over the income bracket please let me know.....

Thanks for listening to my raving!

Bye!

Krystena s

Caden Glutaric Acidemia II

[Guest guest]

Have you tried Beckett Medicaid. We also made to much for SSI, but qualify for this type of Medicaid. This is based on Meghan's income (which is next to nothing). We do have to show a tax return to show that we are not eligible for SSI first. Hang in there.

Tina

veldejay@... wrote: Sharon, Sorry to hear about your frustrations with SSI, I think the whole system is set up to be that way! When Chelsea first started early intervention, the social worker encouraged me to apply for SSI. What he told me is that the system is set up to be very difficult, a result of abuses to the system. He told me I would get denied the first time and probably the second and third. He said to keep trying and eventually persistance will get results.But it is very frustrating, I have applied once and was denied. I spent a lot of time organizing all of Chelsea's paperwork, so I could show them that she is indeed severely impaired, she was even with me at the interview. All the SSI lady did was look at the tax form and said we made too much thank you for your time. It felt like such a waste, I haven't tried again, but I know I should. Give your daughter a big hug for me, I get sooo sick of insensitive people!e, Chelsea's mom(non-specific mito)Please contact mito-owner with any problems or questions.

[Guest guest]

Hi , Krystena, and everyone,

My husband gets a military retirement (unearned income) and I am a sub

teacher (earned income)and the boys get SSI. Having a " steady income " is

not against the SS rules. How much that income is does matter. I think you

got someone who didn't know what they were talking about. It's a very

common occurance with big burecratic (sp) institutions. I always ask to

speak to a supervisor. You have a bit better chance with them.

As for every handicapped person getting SSI it just won't work. It's a

welfare program aimed at the low income folks with little resources. Do I

agree with it? Not necessarily, but it's the rules. We keep our income low

so we do qualify. Actually, it's the Medicaid that means everything to us

not the SSI money. We have the Beckett waiver here in Nevada and I am

going to see if it works the same as regular Medicaid. I would love to be

able to make more money!! I got mega $$$ in student loans to pay off in

addition to 2 mortgages! I just hate to rock to the boat right now if

the Beckett isn't as good as regular Medicaid. There is just no way

we could afford the co-pay on the medical supplies or the diapers that

Medicaid picks up.

The only way I know that a child whose parents may be over the monetary

limit can get assistance is if one or both parents are receiving disability,

receiving SS (I think) or are dead. And then I believe the money comes out

of SS funds not general funds (?) like SSI does. You can get more info on

www.ssa.gov . It really is a good site.

Anyway, I hope that was helpful to some. You might not like it, but I

can't help what the goverernment does. Take care everyone...

Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube,

w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

http://u2.lvcm.com/jscb

[Guest guest]

.. Hi Krystena,

My daughter Miranda recieves SSI benefits. She has been recieving it on and off ( due to income) since she was 2. She is now 5 1/2. She was approved on the first try, which did suprise me and she was undiagnosed at the time. But in the same, at 2 years old she was very delayed and was ( and still is ) tube fed. As for the income limit, its a pain in the butt! We send in pay stubs monthly and they still regularly mess it up. They will over pay her then in about 2 months they come to me and want it back, Then in the same, they will tell you that you cannot save the money, it must be spent. My primary reason for NEEDING SSI for Miranda is for the medical benefits that go with it. We do have health insurance but they do not cover 100% of everything and tube feeding supplies are expensive! Plus she is now on 10 medications and 5 supplements, it gets expensive.

I do wish you luck in getting it and my advice to you is to appeal if they deny. I actually remember the woman who did our aplication telling me that!!!

If anyone has received SSI for their child who has been over the income bracket please let me know.....

[Guest guest]

We have filled out all the paperwork for a medicade waiver program. we have not heard if has been approved yed or not. It does not give monetary support from what I understand but it will help us get respite care, very limited but at least I can get a break and PT and water therapy. I dont know what else it might have to offer or if it is different in other states.

Horsley

Re: The Social Security Battle Continues

Hi Tina and everyone, A Medicaid waiver is based on the child's disability. I don't think Itdoes takes into account the child's income. Not every state has a waiverunfortunately. Check with your local welfare office about Medicaidwaivers.Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube, w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!http://u2.lvcm.com/jscb> Have you tried Beckett Medicaid. We also made to much for SSI, butqualify for this type of Medicaid. This is based on Meghan's income (whichis next to nothing). We do have to show a tax return to show that we arenot eligible for SSI first. Hang in there.> TinaPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi Tina and everyone,

A Medicaid waiver is based on the child's disability. I don't think It

does takes into account the child's income. Not every state has a waiver

unfortunately. Check with your local welfare office about Medicaid

waivers.

Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube,

w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

http://u2.lvcm.com/jscb

> Have you tried Beckett Medicaid. We also made to much for SSI, but

qualify for this type of Medicaid. This is based on Meghan's income (which

is next to nothing). We do have to show a tax return to show that we are

not eligible for SSI first. Hang in there.

> Tina