No, sorry, try again tomorrow . . .

Let me start by saying I may ruffle some feathers here and it is not my intention.  I can only speak for my experience and want to state that 99.9% of people I have encountered are great, the process and system notsomuch.

I came into awareness of (Lorain) county assistance programs by stumbling into it really.  When Will was 10 months old we started exploring avenues to help us get his development up to par.  I had amazing in-home therapists because he couldn't risk being in a public therapy location - too many kids, too many germs.  We also were put in touch, somehow and I really don't remember how, with Catholic Charities for a case worker who then put us in touch with Help Me Grow.  My experiences are lackluster, at best.

I think the best thing that came out of all the people with the county MR/DD under 3 programs was the connection to a public health nurse and BCMH, or the Bureau for Children with Medical Handicaps.  They assist in covering what our insurance, Medical Mutual, doesn't.

Med Mutual is a good policy but there are many, many hidden loopholes.  They, as any other for profit company, want to pay out as little as possible.  I have spent countless hours fighting with them on just why Will needs whatever it is the doctor has ordered.

BCMH has been a God send but, there too, we have major issues.  BCMH won't cover a child's major diagnosis.  So, for instance, Will's Angelman Syndrome is a guaranteed no for coverage; however, his reflux is his covered diagnosis.  Same goes for Down's Syndrome, Cerebral Palsy, etc.  So, with reflux being the driving force here, they cover pulmonary issues, meds, therapeutic devices.  They don't cover adaptive devices, hospital stays for anything other than pulmonary issues, meds for anything not related to reflux or pulmonary issues, etc.

We were denied for supplemental therapy coverage.  Med Mutual will only cover so many visits a year.  This county provided therapy program would have covered very intensive therapy.  But because BCMH will kick in for some therapy appointments, the intensive portion was denied.  I was denied SSI because, this cracks me up, I make too much money.  I outearn about $300 a month for a single mom family with two children.  That is not arguable and hiring an attorney won't do anything.  I can take less income to qualify for this which, in turn, will qualify us for Medicaid, but that helps Will and hurts Gabbie and I.  There is something called a Level 1 Waiver in the state of Ohio but, again, we don't qualify for that.  Many programs other families qualify for (even those in those big huge houses you drive by and drool over qualify) and we do not.  The reason is one that is sure to get me riled up.

My son is not handicapped enough.  Yes, I have been told this numerous times by numerous people about numerous programs I have tried to get.  I am really no good at asking for help and don't want something for nothing, but I have worked since I was 14 and have paid into all these programs.  Anything to help Will is what I want.  I spend way more than I earn and have gotten creative about keeping us above water.  

To be told, eh, he is not handicapped enough to qualify for a Waiver or more intensive therapies just nauseates me.  What in the world am I supposed to do with that?  Apologize he doesn't have seizures?  Apologize is semi-mobile in his own way?  Apologize he "looks" so very much like every other child without health issues until you look a little closer?

In talks with many of Will's medical team it seems there is this "class" of parent(s) that exists that not many talk about or feel need anything.  We aren't poor enough for services, we aren't rich enough to cover everything comfortably, we fight with insurance companies and all the other entities and their red tape and, because we aren't technicall impoverished, not many feel we need help.  As an example, the apartment we are in is not my dream location for Will and his needs in life.  It works because we need it to but it also works because I can't afford to do anything else.  I could scrimp and save for a down savings on a house but should we move in and the furnace blow or the hot water tank or the roof blow off, we are out of luck.  There is always fundraising but there is another sticky subject.  Almost like missing people/children cases or hot crimes, one has to wonder how one child gets more airtime and support than another.  It is all sticky and political.  

There has to be a better way.  There just has to.

A discussion with a friend brought up what I feel is a genius idea.  A co-op.  A barter system, if you will, with a group of families and special needs kids with a need (or slew of needs).  I am no good at feeling like I am putting someone out or asking for something, but if I come paint your kitchen because I love to and you hate to and then you watch all the kids so I can go out to dinner Saturday night - that I can handle.  I heard of a woman who is ending her marriage and her house was modded for her special needs daughter.  The house she won't be able to keep after the divorce.  Well the county will only modify one house in the child's lifetime.  Now any and all modifications to her new home will be at her cost - not cheap folks.  So you are leaving your marriage, leaving your home and trying to make your way and provide a safe home for your child.  If we could get a team of parents over to do this stuff, maybe people who know contractors, etc., then those parents will have earned so many points in providing the services and be able to cash them in with her or anyone else in the group for a service they need.  Win, win.  At the same time, a network is being built of support, friendship, comraderie, friends for the kids.  I need to iron out the kinks and get it going, but I think this could really work.

There has to be a better way for those people who fall through the cracks.  Who don't earn the popular vote and have everyone actively wanting to be involved to help provide funds and support and meals and love.  For every one story you see all over the local media, there are probably 6 who never get air play.  That just doesn't sit right with me - my son is no more deserved than any other.