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My daughter is 28 months old and has actually been in Early Intervention (called Babies Can't Wait here in Georgia) since her discharge from the NICU at three weeks old(Prenatal stroke & Seizure disorder).<br>
In that time we've seen the services decline horribly. Our county is currently without Speech Therapists(Since March), Occupational Therapists(Since June) & Physical Therapists(Since June). There is no evaluation team in place(Since April), and the few available ongoing services are being performed by "Special Instructors".<br>
My daughter is supposedly one of the "lucky" ones, as her IFSP was reviewed in March, and a Special Instructor was added, so that she is still receiving <i>some</i> services.<br>
In June, we made our first visit to an orthopedist, as her toeing while walking had not resolved. DD was diagnosed with right hemiplegic cerebral palsy. She now has an AFO & a hand brace. The ortho & neuro were livid to find out she was not getting any "real therapy".<br>
I asked our service cordinator about updating the IFSP in light of the new information about her medical and developmental needs and her doctors' recomendations. She said she would work on it and get back to me.<br>
I went to pediatrician for a referral to private services (since EI doesn't have them right now), and he nearly fell out of his chair. He had thought she was getting all of those services through EI. We got started with private therapy, but the clinic we're seeing does not specialize in pediatrics, and I'm very unhappy with the services (although that's a whole 'nuther post!)<br>
Well, two months later we're set up for an IFSP review. The "multi-disciplinary team" they've cobbled together is a Special Instrutor (who's met my dd once) and the District Office EI coordinator, who happens to be an RN and can technically sign off on an IFSP. I think they got desperate to pull together a team since they know I'm such a problem parent. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">:<br><b>Well, now to get to the point....what do I ask for at this meeting???</b><br>
I want my dd to have all of the services she needs to meet her full potential. How do I convince them to write an IFSP revision that will give her services they don't actually have?? What sort of functional goals can I ask for that would encompass all the domains that her CP will actually affect? And How can I get them to follow through on delivering the services if I do get them written in?<br>
At her last eval they claimed she wasn't very delayed, and was doing much better than a lot of other kids in the program, so she shouldn't need as many services...hence the special instructor. (In retrospect though, I think that decision had more to do with the therapists they were losing contracts with, instead of my dd's actual needs) She's automatically entitled to services because of her medical condition, but they implied she would not have qualified based only on development. I disagree though. Her motor issues should be obvious since she has such limited use of 1/2 her body due to the stroke. She walked at 15 months, but she still falls constantly over a year later. She manipulates toys, but only with one hand. She didn't babble until 12 mos, and her private SLP thinks she's more than a year behind other kids in speech, while EI felt her speech was only very mildly delayed because they included vague gestures and signs we had taught her in her word count, which I disagreed with.<br>
Any advice, thoughts, suggestions or stories would be really, really appreciated, especially from btdt moms.<br>
Thanks in advance!
 

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First the EI situation makes me <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/splat.gif" style="border:0px solid;" title="splat"> I've run into that problem with schools - they don't want to give you the services your child needs because they don't have the resources. Well, the same is true of EI as the schools, which is that it's not your problem that they lost contracts. They get to figure out how to deal with that while getting your dd the therapy she needs. Your dd is lucky to have a mother who didn't accept what the system tried to say she needed, but looked further.<br><br>
As far as the IFSP meeting - how did it go? If you didn't get what you wanted from it, write a summary of what happened, what you disagreed with, and why, and date it. Send them a copy of this, and keep a copy for yourself. You should have gotten a handout at the review meeting that talks about your rights, and the process to go through if you have a problem getting the right services. <a href="http://health.state.ga.us/programs/bcw/faq.asp" target="_blank">This site</a> has links to some parent resources in your state. If you continue having trouble, you might want to get in touch with a parent organization, see if they have any suggestions.<br><br>
Get a copy of that referral for services. Have it ready for the EI people. Have the reports from the private SLP, ortho, neuro, everyone. Doctors carry more weight than worried parents, unfortunately. Services suddenly became available for my friend's child when her ped called the EI office (a few times) to ask what was going on, and pester them about it.<br><br>
Be polite about it, but be the problem parent. It's hard for them that they lost clinicians, but they have to deal with it. They are still responsible for providing services to children, including your dd.<br><br>
Good luck. Keep us updated! (I was still angry when I started writing this long comment, so if I'm babbling in it, that's why.)
 

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I just now saw your post. I hope it went well. Keep us updated. If you didn't sign anything at the meeting, just remember that not to sign until you are absolutely satisfied.<br><br>
As for anyone else facing this...remember that doctors, etc. can come to the IFSP or IEP meetings if you ask them too. They can also sumbit recommendations in writing. And you are always, always able to bring an advocate. You can even bring an attorney with you.
 

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Discussion Starter · #4 ·
Thanks so much for the advice!<br>
I did <b>not</b> sign the IFSP yesterday when they said they could not put services they did not have on there. We're supposed to meet again at the end of next week after they consult with the state office, so I've got another week to follow some of your suggestions.<br>
I had planned to be a lot more prepared for yesterday's meeting, but the day after we scheduled it, my husbands brother died. We had to drive from Georgia to <i>Boston</i> and back again to help his elderly parents with the arrangements and attend the service, so we were gone for 10 days. I probably should have rescheduled the meeting then anyway, but with all the drama we had just getting it scheduled the first time, I was afraid to put it off.<br>
I think Bridget's Pediatrician would be willing to submit at least a letter regarding services, if he can't attend outright. I'm also going to try to talk to a parent advocate, or possibly even a lawyer if we can scrape together the funds. I should also be able to get some of her private evals and therapy notes together too.<br>
On the positive side, I did feel very listened to, and no one actually disagreed with my assertion that she needed the services. I felt like everyone involved was very frustrated with the situation and wanted to to what's best for DD. I am a little concerned that the state office may not be so empathetic, so I definately intend to do some more preparation on my own.<br>
Please, keep the advice and stories coming! I need all the help I can get. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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It's good that you didn't sign, and that you feel they understand what you are saying. It is definitely a good idea to be <i>very</i> well prepared before the next meeting! Talking to an advocate would probably be a good step at this point.<br><br>
Keep us updated, and good luck!
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
Sorry about the lack of services! I'm in Canada, so I don't know exactly how I can help. but...<br><br>
DS has left hemiplegic CP, and we are lucky to have had a great team so far. He starts an early ed program in 1.5 weeks, so he'll start to get all his therapies through school. Some of the things we did/goals we set...<br><br>
We casted his dominant arm, to force him to use his left more often. The idea is that their brains are so plastic that by casting, we could rewire his brain somewhat(constraint induced therapy). He wore it for 5 weeks-ish, and it really helped.<br><br>
Goals we have still are for him to walk, and start talking. He's come a long way since we started his seizure meds, it seems he can focus long enough to learn something, instead of blanking out every 3 minutes or so.<br><br>
WRT speech, we use a lot of signs, even making them up if we need to. A picture board can be helpful, too. I make DS feel my mouth/throat when I say a word, amd we were told by our OT to try to get him to lick foods. Also, we were encouraged to get him to drink from a spoon.<br><br>
Swings, teetertoters, swaying her side to side can all help w/ her balance. Hmmm, hope that helps some!
 

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OH. MY. GOD. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/irked.gif" style="border:0px solid;" title="irked">: This is awful!<br><br>
Do you have a local TV station that does scandal stories? I would call. This is an outrage!!!!!!!!!!!!!!!!<br><br>
What about your local representative, or even state representative? I would send letters, call their offices, and start getting vocal about your county and state are dropping the ball and neglecting their responsibilities toward disabled children.<br><br>
This needs attention. Embarrassing, public, vocal attention. It never ceases to amaze me how quickly an organization (especially government-connected) with "no funds" can FIND funds when they're publicly exposed or when a lawsuit is brought.<br><br>
I'd try public humiliation before going through the stress and expense of finding a lawyer.
 
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