Tuesday, November 2, 2010

MAJOR PROBLEM

I know these capital letter posts are getting exhausting.  Just think of how I feel.  LOL.  This post is in regards to Irina.  I am the parent to seven special needs children.  All adopted.  No secret there.  I do know of families who receive services and funding some times in the form of SSI for their children.  I want to preface all this with saying I have absolutely nothing against that.  I really don't.  It is a choice that everyone has to make.  That being said, we chose to never apply for anything of that nature b/c we felt we should be responsible for our kids' needs, medical care costs, etc. if it was at all possible.  And, it was.  Thankfully, we have wonderful insurance.  Well, by not asking for assistance, we may have shot ourselves in the foot.  We have a major problem now and trying to locate a lawyer as not sure it can even be fixed.  Let me explain.

Irina turns 18 at the end of December.  She will be consider an adult by law but as you all are aware, FAS children do not mature until around age 25 to 27.  Her social age is currently around 12 to 13.  We spoke w/ our neurologist who said we must apply for SSI before she turns 18 or it is near impossible to get it as an adult.  BTW, been told by people who work there that they are told to almost always automatically do a denial on the first application and that you have to apply several times.  I had a friend who used to work w/ the adult section of the SSI department here.  Now, we can not go down and apply for SSI for her currently.  Why?  Because we never readopted her in the state of NC.  If she is not readopted, she will not qualify for SSI no matter what.  Well, to readopt her in NC there is a 60 to 90 day waiting period once you apply.  Yep, past her birthday.  So, we must apply to redopt, magically have it waived(the waiting period) and then apply for SSI for the first go around.  I feel bad as we may have cost our daughter income for the rest of her life due to us not wanting to rely on anyone for assistance while they were younger.  Irina will not be able to hold down a job that pays like someone who is able to hold a college degree or such.  She will most likely have a minimum wage paying job and will need that SSI to maintain basic living expenses.  It is still questionable whether she'll be one of our children that can live independently or not.  She is our first, new territory for us the next few years.  We're all learning. 

All these years, that we've been paying their medical costs, their therapies, etc, it never occurred to me maybe we should have applied for help as maybe it would affect my kids' future.  Never once thought about it.  Now, I am.  I had a friend in my daughter's class that had a child that received $700 a month SSI, and mileage to any appts. she had.  That child was way higher functioning than my daughter w/ many less issues.  I don't know if that is common place as this is all new to me.  I had another friend who received free respite care for her kids.  One lady had people come w/ her to help w/ her child.  I was stunned all this help was out there and was at no cost to them.  All their kids were bio kids so not sure if that makes a difference or not.  Yet, since we were doing okay w/ just us and things were working out, I didn't inquire or even think it might be an option.  Okay, I admit, respite would have been a dream come true!  Like I said previously, I have no issues with folks getting services or getting help for their children.  I just hope since we didn't use it all these years, that Irina is not "punished" for that as an adult.  I'm told if they don't have SSI as kids all this time, it is very difficult to get it as an adult.  I'm so confused.  We go Thursday to try to figure out this mess.  Anyone with insight, do let me know. 

Do any of you with special needs have children that receive SSI?  If so, what were you told?  Will it hinder their future if they don't have it as young children?  I'm looking for answers for sure.  For some of you families out there that had the choice to apply for SSI or not, did any of you go the same path we did?  I have been told many times over the years to apply for SSI from teachers but never understood why.  They really never said why.  I mean, with excellent insurance, I never saw a need quite frankly for our family.  Again, I have no ill feelings for those who choose it.  I want to make that clear as I know some may take this all the wrong way.  I just want to make sure that since we didn't collect this as a child, that when she needs it as an adult to meet basic needs, it would be there for her.  Irina will definitely be able to be a productive member of society.  That, I have no doubt about.  She is highly motivated and an awesome worker.  Been told by her current on sight job that they would hire her later if she wanted to.  Great to hear for sure.

Over the years, we've had nasty things said to us about our kids and some times I think that is why we chose not to get assistance.  We've been told we were adopting special needs children simply to receive stipends.  Umm, NO stipends here I can assure you.  We've been told why adopt special needs kids as they'll grow up and leach off society.  I can assure you, I will make sure all my children grow up with a great work ethic and so far, I've been told the teens have an awesome work ethic and work hard and proud when at a job.  They may not end up being rocket scientists by any stretch but they will indeed contribute to society and not "leaching" off society as some have suggested.  Some of these myths and mindsets I think have also had me shying away from asking for SSI any of these years.  Don't know.  Just know my head is about to explode from all the thinking we've had to do these last 2 days.

I'm ready for some boring posts soon.  LOL.  What's for dinner or what are you doing?  Something simple, not complicated, not an issue, not a time sensitive thing.  Maybe next week, huh?

Tomorrow is Wednesday.  Warren and I go mid-day to redo our medicals that Bulgaria has requested.  They want the date of exam, to match date of letter to match date of notary.  Now, try asking your docs that favor and ask them to hurry.  Not the thing I wanted to do.  I mean, it is flu season and busy season for doctors.  We love the lady we go to.  She's great and understands all the adoption stuff.  Wish us luck and no complications w/ that.  Oh, hospital called me today & said they must reschedule everyone's MRI on Friday.  Why?  Because there are no techs available to do them.  Umm, okay.  It's a hospital and they have no MRI techs this coming Friday.  Not feeling much confidence w/ that.  LOL.  What hospital is missing staff for a whole day?  Too funny.  Well, to a point.  Scheduling mishaps happen so not stressing it.  Just have to reschedule everything for next week now.  Again, minor compared to other things happening here. Thursday is a huge IEP meeting for Irina.  After it, we'll head out to go down to get her fingerprinted and background check done.  While there, also inquire about the whole readoption thing.  See if we can pull it off ourselves versus hiring the lawyer.  Normal time frame, no problem, but w/ ours it will most likely need a helping hand.  Then, head off to the SSI office to fix the social security card and try to ask about applying for SSI.  After that, outlet mall to find Warren a sweater for the Christmas photo this coming Friday evening.  We live near a huge outlet center that is a mecca of sorts for tourists.  They literally come by the busloads to shop there.  NEVER go during peak seasons.  The beginning of November we're still okay.  I mean zoo mentality if you go during tourist shopping season.  After that, it will be time to pick up one of the "littles" from preschool.  The other one is w/ me all day as a ride along.  Making sure I wear her out tomorrow outside.  LOL.  She's 2yo btw.  After we pick that one up, we figure out what is left to cover.  I've missed a ton but can't think right now.  Have to go to find an old adoption contract for one of our agencies.  Going to try to convince Warren to go for a walk at 11pm.  Yep, that's when I have free time today.  Is it Friday yet?  The week seems to have lengthened for me.  More pics soon I hope.  Need to get back to some normal topics but then again, I know other adoptive families experience stuff like this so nice to share to others who understand all this and some times can offer advice.  Have a wonderful evening. 

4 comments:

  1. If she is on an IEP see what the post secondary help is. In my state we have VocRehab that helps kids with IEP with college and services. If your state has something similar they might be able to help you. You also may want to see if there is a school social worker at your school or in the district that might know who may be able to help. Good luck!

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  2. I don't think that Irina will have huge problems getting SSI. If she is living at home, it's likely that she will get it. Maybe not the first try, but thats the norm. She may need to apply for SSDI, for her disability. SSI usually picks up what is NOT covered by SSDI. This is my opinion, but I think you should not listen to the negative folks and really take a look at which of your kids would qualify for SSI. It is better to start when they are younger. I'll say a Prayer that everything woks out well tomorrow! : ) Jo

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  3. This should have been discussed at her transition planning meetings when she was 14/15 years old, (some states do them at 16) Wasn't it discussed then? Part of the purpose of those meetings is to make sure the ball is rolling to get these things in place by the time the child reaches the age of 18.

    My daughter (who is 14 with Down syndrome) cannot get SSI because she gets child support from her dad, and the ordered amount is greater than the SSI amount would be. However, she does get a medicaid waiver, which "waives" the typical income guidelines for MA, and instead looks an her income only. Since she is a child with no income, she is able to get MA. I do have a parental fee, which is not small. BUT, the bigger pay off is that in MN, Waivers roll over to adult services when she turns 18. She has a dual diagnosis waiver (TBI/NeuroBehaviral) which is quite high, and nearly impossible to get!) So I deal with the parental fee for a few years, along with my regular insurance premium so that she has this available to her as an adult.

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  4. Thank you for posting about the SSI issue. We're not there yet; but we will be and need to understand all this. God bless, Jennifer

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