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>

> I was told to file social security for my son that has PDD-NOS, ADHD,

> Mood disorder-NOS.

>

> My son was denied.

>

> I was wondering if anyone else has filed Social security for PDD-NOS?

>

> Steph

>

Well My son has PDD-NOS and is non verbal and was issued SSI in 2004

What was the reason for denial.

Sometimes income can be a factor.

My son also had to go through some testing.

hope this helps

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My daughter was diagnosed with ppd nos and ssi denied it too.

I thought nys will be more easy but you have to earn less than 1600 to qualify.

But this part of the journey with autism.

Sent from my BlackBerry® smartphone with SprintSpeed

Social Security Issue

I was told to file social security for my son that has PDD-NOS, ADHD,

Mood disorder-NOS.

My son was denied.

I was wondering if anyone else has filed Social security for PDD-NOS?

Steph

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We were denied too - I'm not really sure that I even completed the whole

process.  I know income was part - you really have to have extremely low income

to qualify.  I'm not sure about the rest.  Still, I would urge people to go

ahead and spend the time it takes to put in an application, because if one day

the policies for qualification do change, then you may be eligible for

retroactive payments.  I think it is SSI disability that you would be applying

for.  I was under the impression at some point that if we were able to qualify

for SSI disability (separate from regular ssi i think), that even though our

income would prevent us from any kind of payment, that it would qualify us for

the state Medicaid.

Then there is application at the state level - ie Medicaid.  (Is it called that

in all states? I think some have other names.)  We're not eligible here in

Alabama (as far as I understand), but in states that have the Beckett law

(dunno if I spelled that right), I believe they can qualify for benefits under

that provision (I heard Georgia was one - I could move 2 hrs away and qualify

but I don't want to.)  While providers can be hard to come by for the

Medicaid-type coverage, lab and testing copays and prescription copays would be

covered under those plans, so that would provide a huge help to people there.

I don't have a lot of knowledge on the issue, nor have I been able to find

anyone who does, and I got frustrated with the whole situation when I was very

financially desperate and had to stop the protocol.

My aunt is mentally retarded and has always been under SSI.  I'm not sure why. I

do believe the family income level was poverty level and that may have helped. 

I have a friend who's adopted child has fetal alcohol syndrome and serious

mental issues, and is barely above the level of retardation IQ-wise, and their

family income is just above what would qualify them, and they are unable to

get benefits for him either, despite better diagnostic records than I have.

You start with calling your local SSI office (find it in the blue pages).  You

can make applications online, by phone, or in person, but it's best to do it in

person - although you may want to start online to find all the information

you're going to need.  You have a list of all doctors ever seen with their

address and phone numbers.

There may be info available on some of the CFIDS websites (co-cure.org maybe?) 

that may detail the process too, as there have been lots of effort to get

benefits for some people seriously disabled by CFIDS in a medical climate that

did not recognize the level of disability.

Our local autism society couldn't help - I even went to a meeting once on

applying but do not have any recollection of the information other than I pretty

much figured out that we weren't going to succeed.  Now my son is doing so well

at 9 that I would not consider him disabled and do not forsee him being unable

to work and earn a living either - albeit it may be more of a struggle for him

than the average guy - but then 9 is young and I expect to continue to see him

grow and do well.  When I was trying, he had not been formally tested, and his

CARS rating was in the middle of moderate and severe.

I think if we all got our kids benefits, with the number of kids out there being

diagnosed, it would bankrupt the already messed up system.

My son had practically no services other than a few speech sessions (useless,

too - I did way more myself) and a few weeks at a special ed preschool (at least

they potty trained him at age 4 which I couldn't seem to do myself), and some

extra help w/reading and behavior management at school.  I invested everything I

had in Dr Goldberg's protocol, and aside from practically going crazy myself

trying to stay home when they were little and couldn't make it in preschool,

then started working when Garrett was better able to manage preschool (a big

trial that he did eventually get kicked out of), I feel I certainly made the

right investment.  It took everything we had, and we almost lost our

small cheap house for a few months there.  But we're ok for right now, my

children are doing so much better.

No matter how bad things feel right now... no matter how hopeless you may feel,

no matter what future you envision for your life based on what it is like right

now, no matter how severe your child seems today .... never give up.  Don't give

in to despair, do everything you have to find the strength to put one foot in

front of the other.  Reach out to find support and groups, and even when you're

not able to find a moment of pleasure in any day for months at a time, keep

trying.  I have been in the pits of despair and hopelessness and wanted to die,

and were it not for the hope I found in Dr Goldberg and the belief that children

do have the hope of getting better, I don't know how I would have made it.  Even

though I can sure find enough sorrow today, I can find incredible joy too that

was absent for .... ?years?, and 5 years ago seems like a very long time ago in

how much growth I have found in my suffering.  I still have a long way to go but

I have

actually learned to experience a sense of serenity at times that I didn't even

know before kids. 

I know that didn't have anything to do with SSI lol!  BUT - when I think of SSI,

the emotion and hopelessness I felt when that was a focus is directly attached,

so I think SSI and I feel the agony I was experiencing during the time I was

seeking that help.

HTH,

________________________________

From: <sweetangelgirl122681@...>

Sent: Monday, November 10, 2008 10:35:35 AM

Subject: Social Security Issue

I was told to file social security for my son that has PDD-NOS, ADHD,

Mood disorder-NOS.

My son was denied.

I was wondering if anyone else has filed Social security for PDD-NOS?

Steph

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In Ca, we have an institutional deeming waiver. Other states call it

a Beckett waiver. My understanding is that all states have

this type of waiver. This waiver removes your income from

consideration and your child can not have more than $2500 in their

name. I would look into a waiver. *But* I believe your child must

be affected in at least 3 major areas (I can't remember the details

of what those areas are). If anyone else needs more info I'll try to

dig it up. Let me know.

Cheryl

~Check out my blog: http://www.gryffins-tail.blogspot.com/

On Nov 10, 2008, at 8:50 PM, dr_aitejeda@... wrote:

> My daughter was diagnosed with ppd nos and ssi denied it too.

> I thought nys will be more easy but you have to earn less than 1600

> to qualify.

> But this part of the journey with autism.

>

>

> Sent from my BlackBerry® smartphone with SprintSpeed

>

> Social Security Issue

>

>

> I was told to file social security for my son that has PDD-NOS, ADHD,

> Mood disorder-NOS.

>

> My son was denied.

>

> I was wondering if anyone else has filed Social security for PDD-NOS?

>

> Steph

>

>

>

>

>

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Hi Cheryl - We're in California too and I'm very interested in

learning more about the institutional deeming waiver. If you get a

chance to dig up more info, please post.

Thanks!

--- In , " cher.lowrance " <cher.lowrance@...>

wrote:

>

> In Ca, we have an institutional deeming waiver. Other states call

it

> a Beckett waiver. My understanding is that all states have

> this type of waiver. This waiver removes your income from

> consideration and your child can not have more than $2500 in their

> name. I would look into a waiver. *But* I believe your child

must

> be affected in at least 3 major areas (I can't remember the

details

> of what those areas are). If anyone else needs more info I'll try

to

> dig it up. Let me know.

>

> Cheryl

> ~Check out my blog: http://www.gryffins-tail.blogspot.com/

>

>

>

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Since you're in CA you can just call your RC rep and ask for the

deeming waiver application.

www.dds.ca.gov/Publications/docs/HCBSBrochureRevised904.pdf

Cheryl

~Check out my blog: http://www.gryffins-tail.blogspot.com/

On Nov 14, 2008, at 6:22 PM, lvtoeat2 wrote:

> Hi Cheryl - We're in California too and I'm very interested in

> learning more about the institutional deeming waiver. If you get a

> chance to dig up more info, please post.

>

> Thanks!

>

>

>

>>

>> In Ca, we have an institutional deeming waiver. Other states call

> it

>> a Beckett waiver. My understanding is that all states have

>> this type of waiver. This waiver removes your income from

>> consideration and your child can not have more than $2500 in their

>> name. I would look into a waiver. *But* I believe your child

> must

>> be affected in at least 3 major areas (I can't remember the

> details

>> of what those areas are). If anyone else needs more info I'll try

> to

>> dig it up. Let me know.

>>

>> Cheryl

>> ~Check out my blog: http://www.gryffins-tail.blogspot.com/

>>

>>

>>

>

> ------------------------------------

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute, the Parent Coalition,

> or the list moderator(s).

>

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Hi Cheryl-I was wondering approximately how long does it take to get onto the

waiver in CA? I live in New York, but am considering moving to CA. The waiver

takes about 4-5 months here in New York. Thanks for any info.

Re: Re: Social Security Issue

Since you're in CA you can just call your RC rep and ask for the

deeming waiver application.

www.dds.ca.gov/Publications/docs/HCBSBrochureRevised904.pdf

Cheryl

~Check out my blog: http://www.gryffins-tail.blogspot.com/

On Nov 14, 2008, at 6:22 PM, lvtoeat2 wrote:

> Hi Cheryl - We're in California too and I'm very interested in

> learning more about the institutional deeming waiver. If you get a

> chance to dig up more info, please post.

>

> Thanks!

>

>

>

>>

>> In Ca, we have an institutional deeming waiver. Other states call

> it

>> a Beckett waiver. My understanding is that all states have

>> this type of waiver. This waiver removes your income from

>> consideration and your child can not have more than $2500 in their

>> name. I would look into a waiver. *But* I believe your child

> must

>> be affected in at least 3 major areas (I can't remember the

> details

>> of what those areas are). If anyone else needs more info I'll try

> to

>> dig it up. Let me know.

>>

>> Cheryl

>> ~Check out my blog: http://www.gryffins-tail.blogspot.com/

>>

>>

>>

>

> ------------------------------------

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute, the Parent Coalition,

> or the list moderator(s).

>

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I live in nys and we didn't qualified for ssi . How do I get a waiver?

Thanks

Sent from my BlackBerry® smartphone with SprintSpeed

Re: Re: Social Security Issue

Since you're in CA you can just call your RC rep and ask for the

deeming waiver application.

www.dds.ca.gov/Publications/docs/HCBSBrochureRevised904.pdf

Cheryl

~Check out my blog: http://www.gryffins-tail.blogspot.com/

On Nov 14, 2008, at 6:22 PM, lvtoeat2 wrote:

> Hi Cheryl - We're in California too and I'm very interested in

> learning more about the institutional deeming waiver. If you get a

> chance to dig up more info, please post.

>

> Thanks!

>

>

>

>>

>> In Ca, we have an institutional deeming waiver. Other states call

> it

>> a Beckett waiver. My understanding is that all states have

>> this type of waiver. This waiver removes your income from

>> consideration and your child can not have more than $2500 in their

>> name. I would look into a waiver. *But* I believe your child

> must

>> be affected in at least 3 major areas (I can't remember the

> details

>> of what those areas are). If anyone else needs more info I'll try

> to

>> dig it up. Let me know.

>>

>> Cheryl

>> ~Check out my blog: http://www.gryffins-tail.blogspot.com/

>>

>>

>>

>

> ------------------------------------

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute, the Parent Coalition,

> or the list moderator(s).

>

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I honestly couldn't tell you as we don't have it. I haven't bothered

to apply as my son isn't likely to qualify.

Cheryl

~Check out my blog: http://www.gryffins-tail.blogspot.com/

On Nov 17, 2008, at 1:05 PM, gvizjazz@... wrote:

>

> Hi Cheryl-I was wondering approximately how long does it take to

> get onto the waiver in CA? I live in New York, but am considering

> moving to CA. The waiver takes about 4-5 months here in New York.

> Thanks for any info.

>

>

>

>

> Re: Re: Social Security Issue

>

>

>

>

>

>

>

> Since you're in CA you can just call your RC rep and ask for the

> deeming waiver application.

>

> www.dds.ca.gov/Publications/docs/HCBSBrochureRevised904.pdf

>

> Cheryl

> ~Check out my blog: http://www.gryffins-tail.blogspot.com/

>

> On Nov 14, 2008, at 6:22 PM, lvtoeat2 wrote:

>

>> Hi Cheryl - We're in California too and I'm very interested in

>> learning more about the institutional deeming waiver. If you get a

>> chance to dig up more info, please post.

>>

>> Thanks!

>>

>>

>>

>>>

>>> In Ca, we have an institutional deeming waiver. Other states call

>> it

>>> a Beckett waiver. My understanding is that all states have

>>> this type of waiver. This waiver removes your income from

>>> consideration and your child can not have more than $2500 in their

>>> name. I would look into a waiver. *But* I believe your child

>> must

>>> be affected in at least 3 major areas (I can't remember the

>> details

>>> of what those areas are). If anyone else needs more info I'll try

>> to

>>> dig it up. Let me know.

>>>

>>> Cheryl

>>> ~Check out my blog: http://www.gryffins-tail.blogspot.com/

>>>

>>>

>>>

>>

>> ------------------------------------

>>

>> Responsibility for the content of this message lies strictly with

>> the original author(s), and is not necessarily endorsed by or the

>> opinion of the Research Institute, the Parent Coalition,

>> or the list moderator(s).

>>

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In NY it's called a Beckett Waiver but you can also call it a

deeming waiver, they'll know what it is. I'm not sure who you go

through in NY but I'm guessing it would be SSI. I read somewhere

that QSAC, inc. will help with the waiver but I don't know that for a

fact and honestly, I don't know anything about QSAC. I just know

they provide services for autism. I do know that if you get denied

for it to keep applying every 6-8 months. Just keep applying every

time you get denied and the reason why you want to do that is because

if you do get approved, you'll get back pay from when you first

applied and you want to keep applying because many times you don't

get approved the first few times around - especially as finances

change in your own life.

Cheryl

~Check out my blog: http://www.gryffins-tail.blogspot.com/

On Nov 17, 2008, at 1:17 PM, dr_aitejeda@... wrote:

> I live in nys and we didn't qualified for ssi . How do I get a waiver?

> Thanks

>

> Sent from my BlackBerry® smartphone with SprintSpeed

>

> Re: Re: Social Security Issue

>

>

>

>

>

>

>

> Since you're in CA you can just call your RC rep and ask for the

> deeming waiver application.

>

> www.dds.ca.gov/Publications/docs/HCBSBrochureRevised904.pdf

>

> Cheryl

> ~Check out my blog: http://www.gryffins-tail.blogspot.com/

>

> On Nov 14, 2008, at 6:22 PM, lvtoeat2 wrote:

>

>> Hi Cheryl - We're in California too and I'm very interested in

>> learning more about the institutional deeming waiver. If you get a

>> chance to dig up more info, please post.

>>

>> Thanks!

>>

>>

>>

>>>

>>> In Ca, we have an institutional deeming waiver. Other states call

>> it

>>> a Beckett waiver. My understanding is that all states have

>>> this type of waiver. This waiver removes your income from

>>> consideration and your child can not have more than $2500 in their

>>> name. I would look into a waiver. *But* I believe your child

>> must

>>> be affected in at least 3 major areas (I can't remember the

>> details

>>> of what those areas are). If anyone else needs more info I'll try

>> to

>>> dig it up. Let me know.

>>>

>>> Cheryl

>>> ~Check out my blog: http://www.gryffins-tail.blogspot.com/

>>>

>>>

>>>

>>

>> ------------------------------------

>>

>> Responsibility for the content of this message lies strictly with

>> the original author(s), and is not necessarily endorsed by or the

>> opinion of the Research Institute, the Parent Coalition,

>> or the list moderator(s).

>>

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That depend on your county.  I live in upstate NY and here we have service

coordinator's and they assist us in getting an income waver.  Call your local

social services and ask.  Sheri

> Hi Cheryl - We're in California too and I'm very interested in

> learning more about the institutional deeming waiver. If you get a

> chance to dig up more info, please post.

>

> Thanks!

>

>

>

>>

>> In Ca, we have an institutional deeming waiver. Other states call

> it

>> a Beckett waiver. My understanding is that all states have

>> this type of waiver. This waiver removes your income from

>> consideration and your child can not have more than $2500 in their

>> name. I would look into a waiver. *But* I believe your child

> must

>> be affected in at least 3 major areas (I can't remember the

> details

>> of what those areas are). If anyone else needs more info I'll try

> to

>> dig it up. Let me know.

>>

>> Cheryl

>> ~Check out my blog: http://www.gryffins -tail.blogspot. com/

>>

>>

>>

>

> ------------ --------- --------- ------

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute, the Parent Coalition,

> or the list moderator(s) .

>

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