How hard do you have to fight to get the services you need?

[windymama]

Every service seems to be trying to pass of DD to another service.  Home Care passed her to Early Intervention who is encouraging us to put her in nursery school so she's "socialized" (but will also become someone else's problem as they don't look after kids in formal nursery/preschool settings).  We've been waiting for about 6 months from when PT ended with Home Care to when PT & OT from EI picks up.  That's 6 months without any much needed therapy.

I am so sick of constantly fighting to get DD the help she needs.  It's been something we've been doing since we discovered her initial heart problems prenatally and I'm tired but can't give up because who will help her if I don't?  I'm half tempted to go private but we can't afford it.  I have to ask - is it like this for everyone?  Does every parent have to fight tooth and nail to get seemingly basic services for their kids?

Background - DD is 21 mo who cannot stand or walk on her own.  She also has speech issues (she babbles but no words) and may have a vision problem (still waiting for the referral to a eye dr or opthamologist).  Her initial problem was a heart defect which, thankfully, was repaired at 5 mo and hasn't cause her any issues since.

[~cassie]

We have aged out of EI but didn't have any issue when we were in it until the last 6 months.  And luckily our therapist was able to get through the red tape to get him what he needed.  But all of our issues were due to budget cuts.  A lot of funding is being cut from early intervention.  We did end up going private for speech through our local university which is only 75$ every 3 months!  We couldn't get him any help for OT and also couldn't afford it private.  Fighting the system sucks but it can be worth it!

[askew]

We have had nothing but great services from our EI. We have an awesome coordinator who goes along with whatever the therapist recommends. They even looked for ways to qualify my DD. She was not really delayed enough for OT, but they worked it out anyway, as she is really delayed in gross motor. I see you are in Canada, maybe it works differently up there. It would suck to have to fight for every last thing. We do go private for therapy as well. We do NACD, which we pay for, and we see an Osteopath and a Feldenkrais person, which we pay for the part insurance does not cover. (60/40) 

Does your DD have a diagnosis? That might help. My DD has a chromosome micro deletion and a birth injury. I have a friend who got her son an Autism diagnosis, even though it did not fit perfectly, as the diagnosis opened a lot of extra services. With a heart defect and delays, did they test her for genetic involvement? IDK if the diagnosis would help open doors in Canada. 

[momto2monkey]

My DS is older and already in the school system and i feel like I am in a daily fight with them but I to am like you if i give up no one else is there to fight the fight so we must keep on. It seems with the budget cuts they have gotten worse. Keep fighting that is all we can do.

[Peony]

Yeah, I've got 3 children will all different issues, and it has been a battle for every single thing. We've had no choice but to go completely private for everything for 2 out of the 3 due to crappy insurance, schools not recognizing dxs, etc... We went as far as to hire an advocate to try and fight for services for DD1 through the school only to realize it was pointless, they had been sued multiple times for the same dxs and still provided nothing. It sucks, our medical/therapy bills are insane. DS qualifies for speech therapy though EI but not for PT, his only dx right now is hypotonia at 21 months. I fought and got our awesome pedi involved and managed to get 3 consults with a PT through EI. He was fitted for shoe inserts which finally has allowed him to improve his balance. He doesn't speak at all, but I already getting the sense that he will try to be graduated in May from EI. Which will be another battle once again. Private doesn't always mean the fight end though, it can be easier, but waiting lists, limited resources, etc... can still be a challenge, or least it has been for us. 

[windymama]

Thanks for the replies.  I was at a low point when I wrote this, I'm about a month and a half from delivering baby #3 and trying to figure out the system was getting frustrating.  Part of my problem is that my DS was in a form of EI when he was young and everything went so smoothly, in part because we were in it from birth (with DD we moved when she was 1 so we went from recieving therapy to the bottom of every waitlist) and his needs weren't as great as DD's.

Fortunately we're officially in with EI for the next little while and our awesome pedi referred us to a couple of other services.  The PT we met with is wonderful and the ST was nice but speech will be a struggle as I don't think we can make it work into our schedule, especially after the baby's born.  We are also meeting with home care again but she was so offensive on the phone that I'm sorely tempted to just to not deal with them and her b1tchiness.
 

Originally Posted by askew 

We have had nothing but great services from our EI. We have an awesome coordinator who goes along with whatever the therapist recommends. They even looked for ways to qualify my DD. She was not really delayed enough for OT, but they worked it out anyway, as she is really delayed in gross motor. I see you are in Canada, maybe it works differently up there. It would suck to have to fight for every last thing. We do go private for therapy as well. We do NACD, which we pay for, and we see an Osteopath and a Feldenkrais person, which we pay for the part insurance does not cover. (60/40) 

Does your DD have a diagnosis? That might help. My DD has a chromosome micro deletion and a birth injury. I have a friend who got her son an Autism diagnosis, even though it did not fit perfectly, as the diagnosis opened a lot of extra services. With a heart defect and delays, did they test her for genetic involvement? IDK if the diagnosis would help open doors in Canada. 

We don't really have a definitive dgx.  DD was tested for chromosonial, genetic and metabolic disorders and nothing came up.  I do know that the more problems the kids have the higher up on the waitlist they go.  While in Canada we don't have to pay for services (it's funded through various levels of gov't) it quite often is a case of you get what you pay for.

So it looks like I may have a slight break from fighting until the powers that be need to review her case and the word "budget" comes up.

Thanks for the support and I wish all of you luck in your own battles.