OT pushing SSI vent

Re: OT pushing SSI vent

• bumpuser511563 member

  September 2013

  Auntie has pointed a lot of things to consider. It can't hurt to apply. All they could say is no.
  
  I am going to admit that we have SSI for DS. It took from submitting the application to actually receiving the benefit for DS a six month process. We had an initial interview, had to go in to drop off a few papers and go to Lubbock, TX to get DS evaluated and interviewed. All therapists had to write recommendation letters on DS's behalf.
  
  I am the only one working full time and DH is going to school and we have DS. The amount awarded to DS has helped a great deal. We buy DS clothes, shoes, tuition for daycare, gas for the car to take him to all his appointments, the food DS only eats, a few toys/books, supplies to make social stories and picture schedules, glass stones, reinforcers & pull-ups.
  

  

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• kcisthebombdotcom member

  September 2013

  I was kind of hesitant of applying for ssi for my dd as well. What convinced me is that I could put the money aside for her future. If she gets better, it could go towards college or trade school. If she doesn't get better, lifelong care will be pricey and that will help with the cost.

  

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• bumpuser511563 member

  September 2013

  KC_13 said:

  I was kind of hesitant of applying for ssi for my dd as well. What convinced me is that I could put the money aside for her future. If she gets better, it could go towards college or trade school. If she doesn't get better, lifelong care will be pricey and that will help with the cost.

  I wanted to save it all for DS but SSI said I had to spend it all. His current needs cost us anyway.
  

  

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• kcisthebombdotcom member

  September 2013

  KC_13 said:

  I was kind of hesitant of applying for ssi for my dd as well. What convinced me is that I could put the money aside for her future. If she gets better, it could go towards college or trade school. If she doesn't get better, lifelong care will be pricey and that will help with the cost.

  I wanted to save it all for DS but SSI said I had to spend it all. His current needs cost us anyway.
  

  Eek, that throws a wrench in our plans. Do you have to mail in receipts and stuff? How does that work?

  

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• bumpuser511563 member

  September 2013 edited September 2013

  I am pretty new about this so I don't know. They did mention I would need to report what we spent the money on. No mention of receipts or anything of that sort. I guess I will not know until year end.
  
  Shoot I am going to go in a panic. I don't know when year end is or if we have to re-apply?
  

  

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• realisticdreams member

  September 2013

  Typically you will apply at set intervals, I don't remember off hand but I *think* they are 1, 3 & 5 year intervals.  I didn't even know that SSI came with money in the beginning, we just desperately needed secondary insurance and the state we were in at the time did not have a waiver program. Now, 3 years later we make more than double the income we used too and we are just on a waiver. I'm pretty grateful for the year or so that she qualified for SSI though, we had a couple procedures that were not approved by secondary insurance and we used that money to pay for them.  You should start the process now, you can use the money for anything that directly benefits your LO.  House payment, Electric, Toys, Clothes, basically anything.  No you don't have to keep all the receipts, at the end of the year you fill out a form online that basically says did you use all of the money for your LO, yes or no, etc.
  
  If you qualify income wise, I would certainly apply, our approval was fairly quick because DD1 had CP and had seizures when we applied, but it can take a loonnnggg time.  None of our therapists had ever had a child apply for SSI and get approved so we had no one to back us up or give us advice.  If your OT is offering and trying to help I would take it and run, you should consider yourself lucky!  
  
  The money is also federal not state specific for SSI, some states have a subsidy though.

  DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

  
  

  DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3

  
  

  
  

  http://justthetipblogg.blogspot.com, The Neglected Blog.

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• mommyof4boys member

  September 2013

  Another positive is the extra insurance that would be received.  That helps with the added medical expenses that comes with raising a SN kid.

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• mightmom13 member

  September 2013

  -auntie- said:

  mightmom13 said:

  I have posted or replied in posts about the current OT via EI and my views on what DD needs before; but one of my main issues is that every.single.week she pushes me (as in talks about it over and over and over during the session) about getting/filling out a SSI application for DD. I keep saying I don't think we are there yet, usually with a "just start the paperwork, it takes awhile anyways" response. She also mentioned how you usually have to apply 3 times to get it and is always going to meetings for her kids on denials on their SSI, that scares me.

  This is a link to the general SSI information. 

  https://www.ssa.gov/pubs/EN-05-10026.pdf
  

  The OT is correct that most kids- unless thay have one of the "automatic" dx'd, do go through a rather lengthy process to approval that includes a denial, sometimes two. It's part of the process. When you do prevail, SSA will back date benefits to the first time you applied- for this reason alone- sooner is better than later.

  You seem to be reacting viscerally to this. Like it's a hill to die on. Does it sting because it flies in the face of how you see your child? Or because she sees your child as more impaired than your do? Do you think accepting a cash stipend to help with expenses would some how preclude your child improving and perhaps not needing benefits at some point? 

  Thanks for the link - I will have to look at that. I do not think it is a denial thing on my part, I do think because she is one of the later therapists on the team and an OT that she may think DD is not capable of making the kind of progress she has already made with other things. She has already mentioned therapy past age 3, which is a year from now. The benefits at some point is more the internal struggle/question of benefits at if/what point right now because of her age.

  I told her that though we don't have a lot of money (single mom of SN kiddo), but I don't think that DD should have any money from SSI since there are a lot of other kids out there who could benefit from it more than DD. She said that was silly, saying that it wouldn't take away from another kid - well I know our state only gets so much money so it's not like an endless supply of help, care, or insurance coverage. She is talking about the money, not just state insurance btw. It just makes me feel really uncomfortable, especially when I just try to wave off the subject.

  I won't dismiss you as being silly, but she has a real point. Kids with special medical or developmental needs cost more money than healthy, well developing kids and they can impact their parents' ability to earn additional income by working full time, accepting promotions with more responsibility or working an extra shift. 

  Sometimes it's the kids with a more subtle degree of impairment that have costs that come from getting extra supports and therapies as well as the usual expected expenses of childhood. I got to pay for a $22K/year lab school that made it possible for me to pay for college- a $2K minicamp that made it posssible for DS to travel independently with his peers to the Abacos and Argentina. DS did 6 years of weekly CBT (it's $185/session) and 6 years of private music lessons. 

  Does your child get insurance via a Katie Becket Waiver? Some states tie their non-means tested Medicaid to the federal SSI program requiring parents to apply for SSI benefits as part of the qualification process. So far as I understand it, SSI is a federal program and while no pot of cash is bottomless, if your child qualifies you should accept the money. 

  In a lot of ways, SSI is just like EI or an IEP- it's a benefit for your child. I am certain there were kids with more profound needs in DS's school, but it was never my job to get them what they needed- I am charged with advocating for DS. So, yeah, an hour of SLT a week for a kid who spoke in complete sentences at 15 months even though the building has kids who can't speak or swallow? I'll take it. FWIW, most of the people I know who have declined IEPs are people who are living with some level of denial. 

  I wonder if the OT sees your living arrangements as less than ideal. A while back you were planning to move out of your parents' home because they weren't supportive. (unless I have you confused with someone else) Not really her call to make, but she may see this as a chance to enable you to move out.

  Maybe she sees SSI as a chance for you to fund your own retirement so that money will be available for you to set aside in a trust for your DD's future should she end up on SSI as an adult. At 18, SSI considers the child's income/assets and effectively condemns them to a life of poverty. Parents of kids with SNs who are at risk of not being employed fulltime as adults usually structure their estate so that their child's inheritance goes into a Special Needs Trust to supplement the meager amounts paid by SSI without deeming them ineligible for government programs. My son is a college student with a 3.7; I have my estate set up as a SN Trust.

  I have insurance through my work - covered now at 90% post deductible, but yes she does cost more medically than other kids as well as toys, food, etc because of physical limitations. I am not sure what that waiver is - but we just have my insurance and my income. So yes, even that extra coverage would help - I think it is the me saying "hey DD/I really need this to get along and get things paid" rather than saying "I feel like I am working the system." I work in a metro downtown hospital so I see that a lot and I guess am just over sensitive to that subject. So I could see that being as a little denial-esc if you will.

  And being a SM, yes I cannot pick up extra shifts without further paying for daycare, etc. And I won't get into the lack of paternal support, financially included. The trust is an interesting option - I am a person that struggles with taking any help, bumping up child support included. And yes I am the one trying to move out, which was going to happen next month for sure, but my hospital just announced lay off numbers about 5 hours ago, so until I know more - that wouldn't be a smart move without further info. Making the SSI option one to think about more and more. My off shift days I am a full time stay at home floor time mom - it is not easy. Nor is the emotional strain with my folks easy on DD's anxiety either.

  You have given me a lot to think about there.

  I don't know anything for sure on mito yet - could take another year or so - and DD is making a lot of good progress and has a little under a year until out of EI per age. Also, the main thing she tells me to do each week is go out and get something to help DD get vestibular input - not an activity we can do at home, a mom/kid body strength alternative, or a cheap activity to make at home - it's like get a office chair for only $30 or attach a swing to my folks basement celling, every week something new to "go and get." Sorry, just really frustrated, do not know if she has DD in the best interest, but luckily the IFSP is rescheduled for another 10 days or so out.

  Anyone deal with this or have suggestions?  

  I would suggest you keep an open mind. I get that it's annoying to have to pay money to help your DD develop skills typical kids just seem to be able to grasp without instruction, but that's your reality. At least she is encouraging you to apply for a source of funding that could help lessen your financial burden somewhat. Hell hath no fury like a family struggling for years before someone on their team suggests they apply for benefits they didn't know were available to them.

  It sounds like she's looking for ways to make therapy more enjoyable for both you and your DD which means you'll follow through and be more successful with it. Remember, the model for EI, IDEA Part C, is professionals supporting families by teaching the parents to be the teacher/therapist. 

  I think she means well too - she is from another country as well so that may have an effect on how much she thinks the government should help out their citizens but that could be reading into it as well. I am trying to tell myself she knows the system rather than trying to get around it - but as I said in my work I see it the other way around all the time so I need to just switch gears.

  And when you do look at the long term effects of financial burden you make a good point - it's hard to see 5 years down the road right now not to mention the stability of a home we could live in for DD's growing up. Thank you for your thought out response.

   

  
  

  
  

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• mightmom13 member

  September 2013

  Thank you all - you have given me a different point of view from the view-point I actually want, parents of these kids who have had it on many different levels for many different reasons.  As I said in auntie's reply too, I found out today that my job (our sole income/insurance source) may or may not exist in a month or two. Gotta love news leaks - everyone is checking in now - it's actually how I found out right before my boss called me.

  @realisticdreams - yeah I would try and dole out any income from that just for DD as you do because it is what I do now with any paternal assistance I do get financially, which is not a lot. I wonder if her being on that would affect child support or having to be a "joint decision" - I would think not on the latter since I have the insurance, pay all medical with only a reimbursement order, and do all the day to day. Also I must look into the age application too - if I do this I would need to do it by 3 if it would truly financially be of help.

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• twoasone1 member

  September 2013

  I had a nice long reply, and then my computer went crazy and deleted it before I could post it.  

  Basically, I just wanted to say that you should apply for it now because you never know what could happen with your DD health.  Hopefully she does get better and then you are good.  But if not, like my DS1, then you have it in place already and you don't have to worry about dealing with the government and paperwork while going through more medical stuff with your child.

  
  

  My DS1 has had SSI for 1 1/2 years.  We first applied at the urging of his social worker.  I didn't think he would really get it and felt that there were other children who needed it more. But we finally applied and he got it 3 weeks later.  At first we used it for extra things to make life easier.  Feeding accessories, tube pads, etc.  Now though his health has declined so much that we are using it to help keep us going.  His new hospital is 6 hours away and we go there regularly.  He needs medication that isn't covered by either of his insurances 100%, etc.  I guess this one got long too, but I just wanted to let you know that with a special needs child, you never know what may happen.  So get as much help as you can now.  Get everything in place in case you ever do get to a point where things are worse off.  

  Good luck with everything!

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