PDD NOS and Social Security

Alisha - posted on 08/19/2009 ( 17 moms have responded )

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hi,

my 6 year old daughter recently got diagnosed PDD NOS with characteristics of Aspergers. This has been a four year struggle getting the dianosis and now I am both relieved and frusterated. Shes been aproved based on medical need for Social Security but there is more information needed before they can determine if she qualifys for payments. I am at my wits end and just need another mom to talk to that is in the same boat or that has gone down this road previously so I can try to hold onto the last bit of sanity I have.

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Jasmine - posted on 07/31/2013

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Hi alisha.. my son is on the spectrum as well he was diagnosed with pdd nos at 24 months. We also applied for disability, the first time he got denied, we appealed, got a lawyer and won our case. My son has been recieving ever since he is now 3 years old.. And about keeping my sanity was pretty hard but I always thought of my son and that always kept my spirits up.

Alisha - posted on 07/10/2013

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Nicole,
for both my daughter and my son I filled out the online disability report form and applied for benifits online as well. After that I had to do a phone interview to go over the information. with my daughter it took about 3-4 months before i heard anything after that but then i had to go into the office to have a face to face interview and I brought her with so they could SEE FOR THEMSELVES her level of functioning. it has been about 3 months since i applied for my son now and i do not know if he will be approved or not ( he does not have an autism diagnosis his is other mental/behavioral issues ) but it can take up to a year to hear anything. Once a decision is made they will send you a bunch of paperwork in the mail explaining whats next and either you will have to appeal or wait for payments after that. i hope this is helpful

Terrie - posted on 07/09/2013

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Hi, I have a 13 year old son on the spectrum. Just so you know, they have changed the criteria of the diagnosis putting most of them under th he umbrella called Autism Spetrum Disorder. My son was first diagnosed with PDD-NOS at age two because they were not for certain what was going on with him. Then at age 6 He was diagnosed with mild to moderate Autism. We were not denied the first time and had SSI within six months, but the key is to have an advocate. We had a case worker from MHMR speaking on our behalf at the very first appointment right down to the last one. Sorry that everyone is going through this. I found this cool support group.They even have an app for certain phones but they can also be found on line. It is called My Autism Team.

Alisha - posted on 07/06/2013

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OMG I'm so sorry, it has been a very long hard road for me and I have not had time or patience to deal with much else outside my sturuggle with my daughter. This past fall she was inpatient mental hospitalized for 2 weeks and placed in foster care because her behaviors got so out of control i could not handle her myself any longer. They changed her meds and she was home by christmas and has been stable ever since but i was afraid for a while that she might not ever come home again :( As far as school is concerned she has good days and bad, sensory breaks are key and the abiolity to have access to OT both at school and outside of school. With out input from other areas she falls apart.

Charity - posted on 07/06/2013

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My son was recently denied social security. He has PDD_NOS, ADHD, and OCD. They denied him because they have his disability has "Behavioral Problems". He does have behavioral problems, but that is only part of his disability. Each part of diagnoses have their own set of issues for him so I don't understand why he was denied. The part that confuses me is that he qualified for disability medicaid, but not social security. I'm waiting to hear back from a lawyer to help me fight his denial.

Artzone - posted on 11/16/2012

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I have a 5 year old daughter who too is diagnosed with PDD but not on the Autism Spectrum Disorder thats what the dr. say any way. But she also had CDD with the PDD too. I understand that it can be frustrating too have a child with PDD though. Some days are better then others thou. I wish you the best in luck with getting disabilty money to help. I know my daughter can't claim for any seen they say seen she is not on the spertrum it wort be consider which i think is not right but oh well. Well nice to meet you.

Nancy - posted on 10/26/2012

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Hi

My son is 7 yrs old and has also been diagnosed with PDD NOS and has ADHD. He was diagnosed with ADHD when he was 3 1/2. I didn't know I could apply for SSI for him until a friend told me. I applied in August of this year. They told me it would take up to 6 months to be determined. I called them and he said that I would know by January 11th. It depends on the household income. If you make to much then it will be a technical denial. I was told that most cases get denied first. Then you have 60 days to appeal. I pray that I don't have to go through the appeal. Its a long drawn out process.

Nancy - posted on 10/26/2012

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Hi

My son is 7 yrs old and has also been diagnosed with PDD NOS and has ADHD. He was diagnosed with ADHD when he was 3 1/2. I didn't know I could apply for SSI for him until a friend told me. I applied in August of this year. They told me it would take up to 6 months to be determined. I called them and he said that I would know by January 11th. It depends on the household income. If you make to much then it will be a technical denial. I was told that most cases get denied first. Then you have 60 days to appeal. I pray that I don't have to go through the appeal. Its a long drawn out process.

Shae - posted on 02/25/2012

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all three of my kids have pdd its very hard and frustrating especially when you suffer from anxiety/panic disorder :( but you will receive ssdi benefits since pdd is a disability

Alicia - posted on 10/05/2009

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Desiree,

The NOS stands for not otherwise specified. I don't know where your son is at functionaly but I have to believe there is always hope and room for improvement. I can't really imagine how much harder this is for you and other single mothers facing this but if you can find support from other parents at a support group that might help. You can always post here too if you need an understanding ear.

Desiree - posted on 10/04/2009

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Quoting Alisha:

PDD NOS and Social Security

hi,
my 6 year old daughter recently got diagnosed PDD NOS with characteristics of Aspergers. This has been a four year struggle getting the dianosis and now I am both relieved and frusterated. Shes been aproved based on medical need for Social Security but there is more information needed before they can determine if she qualifys for payments. I am at my wits end and just need another mom to talk to that is in the same boat or that has gone down this road previously so I can try to hold onto the last bit of sanity I have.


Hi my name is Desiree and I have a 9yr old boy who as the same dianosis yes I did go down the same road and every day I pray that it gets easier but it doesnt not for a single mother like myself. Not uderstanding why my baby doesnt know much why he cant get thing together. Please tell me were your daughter is when it comes to school. I would love to know can he do better or is it something that comes with the characteristics. One more thing not sure what the NOS stands for . You can stay in touch with me by veravbrown@yahoo.com

Shasta - posted on 10/04/2009

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After a 2 year fight that included going all the way to court. We were just notified that my oldest son will be getting payments. :) My middle son has been recieving payments for about a year now. You're probably at the part where all they want to verify is your income and things like that. They'll ask about your monthly income, if you own anything of value things like that. But, have faith. It can happen. You sometimes really have to fight but, it can happen. :)

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I didn't realize PDD-NOS would allow my child to potentially qualify for SSI? We live in Michigan. This is something I would like to learn more about...

Amanda - posted on 08/19/2009

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My youngest son was diagnosed with PDD about 4 years ago. Our Primary Care Doctor told us we qualified for assistance. She said he is considered disabled and requires more care and we needed to apply for disability threw Social Security. It took us two months just to get an interview. I thought I had it all together I brought in all our chart notes from ASTAR for his testing, OT/PT, Speech, and Primary Care showing his failure to thrive as an infant. All to find out I had to fill out medical release forms. After Social Security sent them off it was about another 8 weeks before we received the assistance. In addition they base your assistance off what you make a a household and make you report anything you own as well. Mainly it is important for the medical. Co pays add up quick!!

Brenda - posted on 08/19/2009

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Unfortunately the government will do everything to discourage us from seeking help when needed from them, hang in there, just continue to give them all documentation that they need and make sure you make copies for them and keep original unless they ask. It took awhile for me to get SSI for my son then I started making too much money and they wanted it all back and am currently paying it back now. The hand out comes with strings and sometimes it is better to try and do it on your own if you have the support otherwise. Be very careful to report all income changes to them at ALL time not just when they ask. I have a friend who has a son who is downs and she has this problem all the time. I will never take SSI for my son again until he is an adult and I expect he will be able to function well enough to take care of himself. Good Luck and God Bless you with patience not ony for you daughter but your situation too.

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