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Monday, May 18, 2015

Ready for the help that doesn't exist

Today wasn't much of a good day.

Janey has been having a hard time lately.  The new medication, if it's doing anything, isn't doing much.  Janey seems very unhappy, and her aggression has increased.  She's hitting me a lot, and over the weekend, she tried very hard to bite me over and over.  Tonight, she bit Freddy out of the blue, quite hard.  School reports aren't good either.  Her teacher reported that she was screaming a lot, and biting randomly, and reacting very strongly when anyone tried to get her to sit down and work.  I've seen that at home---a quick and angry reaction to any redirection or being told "no".  We are feeling overwhelmed.

Over and over, we've been asked if we have had in home ABA services.  I always said no, and that it wasn't help we wanted at this point.  I am becoming less and less of a fan of ABA as the years go by.  Janey doesn't seem to respond to it well.  And the help we need is RESPITE, not someone coming into the house in a situation where we can be at furthest from Janey in the next room.  I can picture Janey screaming non-stop, trying to bite the therapist, them looking to me for help I don't have.  I can picture cancelled appointments, as we found to be the case with Early Intervention, leaving us sitting around the house without plans waiting for someone who never shows up.  I can picture spending the rare moments of peace I have cleaning up in anticipation of therapists arriving.  I can picture....well, you get the picture.

However, the doctor at the Lurie Center and several other people have implied that I need to get this service as sort of a starting point to get any other help.  And lately, I'm ready for any, any, any help I can get, including someone to come in and work with Janey.  I'm ready for any suggestions, for even a ten second moment of respite in the next room.  I felt ready, finally.

SO----here's the kicker.  I'm ready.  I called the family service person for the Lurie Center.  And what I half suspected to be true is indeed true.  We CAN'T GET in home services.  We have the wrong kind of insurance.  Tony has federal Blue Cross, which for some bizarre reason is exempted from the FEDERAL laws mandating coverage.  The Mass Health supplemental plan we recently got for Janey ALSO doesn't cover ABA in the home.

Which means, of course, the only help anyone ever said there was didn't actually exist.  Not for us.  Not now.  Supposedly, starting this coming winter, Mass Health will cover ABA, but there will be waiting lists and huge backups and priorities for younger kids.  In reality, even then it's not going to be easy to actually get.  And for the past few years, when I've been thinking I was someone holding out on help that I didn't think would be that helpful---well, surprise.  I couldn't have gotten that help anyway.

So where does that leave us?  THERE IS NO HELP.  That is something I am putting in caps, because despite it being the truth, I think many people still believe it isn't.  I asked the family service person today, in any way I could think of, if there were ANY respite available, ANY program Janey could attend on weekends, ANY way to get more help.  And the answer  There isn't.

I have a child who requires around the clock supervision, who is aggressive to the point of hurting us, who cries for hours on end, who is not toilet trained, who bites herself badly all the time---and there is no help.

I guess this the reality I need to accept.  The feeling I got, the implication I felt I was hearing, at the clinic is that the only real help is now and then kids going into hospitals like Bradley, where Janey went in November.  I'm not willing to accept that.  Although our insurance was very good at covering it (but not Children's Hospital---they are supposed to pay some of that bill, but have yet to pay a cent), it cost the insurance a huge amount.  It makes no sense---they will pay for a psychiatric hospital but not the much cheaper help that could keep her out of one?

I will stop now, for fear of rambling.  But I wanted to get this down before I calmed down, for a change.  I try to not get angry.  I try to not get upset.  But tonight, I am.  Janey is my daughter.  I love her.  I will care for her as best I can for the rest of my life.  But somewhere, somehow, something is drastically wrong when there is no help at all for those like her that need it most.


Leigh said...

Hi, Suzanne: I'm sorry to hear about the tough week. I was reading in Bostonia magazine a couple of months ago that BU has established a Center for for Autism Research Excellence and profiled a girl, Emily, and her family that are part of a study.

I think I read at one point that you are aware of all of the studies but connecting with them might, at minimum, give you a contact - or maybe even a focus of future study?

While I was looking for this article for you I noticed this article that says, Help for Parents Caring for Children With Disabilities. It is about a website for BU faculty members to share their stories as parents. Maybe reaching some of these people would help?

I'm looking for help too, I've written emails for about 15 years to get some help for my parents and just get the same letter back saying: you need to reach their case worker(?)

Freeyoke said...

I've probably said it before but it strikes me as odd that people will turn down ABA when we could never get it in Georgia. I wouldn't worry about the household appearance as the therapists see some real dumps. They have been punched, kicked and bitten so that's part of the job and try to curtail those nasty behaviors.

I read that a lot of parents with autistic kids pushed hard for Obama in 2008 thinking there would be some help but coverage for autism therapies was written out of Obamacare.

There are some big gaps in getting ABA in states like Massachusetts. Imagine how bad it is in other states. I withdrew a job application when I found out there were ABA providers in Jonesboro, Arkansas- surprise but it's amazing how huge tracts of America has no ABA despite state insurance mandate laws. Pick a state and select ABA and there's at least a big gap in data or worse.
The law just changed in Georgia so the waiting list of pent up demand for services will be longer than most families patience.

"It makes no sense---they will pay for a psychiatric hospital but not the much cheaper help that could keep her out of one?" Old issue as Reagan said the same thing with the Katie
Becket case.