Question on EI

• By chaneymb
• Posted December 1, 2008 at 7:47 am
• Report post

Don't give up fighting for your baby...
Tell the coordinator your concerns and keep educating yourself on how to fight the system. Unfortunately, some of us end up with great EI systems and some with systems that are lacking. Ask her what your options are.

• Reply

• By katek
• Posted December 1, 2008 at 10:46 am
• Report post

Tell the coordinator (BTW, were you the one who dealt with the coordinator who came to your house sick?) that the research clear shows that babies born before 29-30 weeks gestational age are very much at risk children. As the goal of early intervention is to prevent problems, you want baby monitored.

Given that you've had experience with babies, baby feels loose to you, and baby is an "at-risk" child, you want another evaluation done in a month (or whatever time frame would make you feel comfortable). I'm assuming that body control would fall under a PT's area. You could say that you do NOT want baby "graduated" from the program.

I hope that they aren't giving you problems. With tight budges in our economy, I'm afraid that EIPs won't be working as carefully as they should.

Also, when having evaluations done, never emphasize baby's strengths or overemphasize what baby can do. If baby does a skill and they ask about that skill, say that baby does that "OK" or "acceptably," not "really well." And don't offer up an special talents unless asked about them directly.

Your baby is still quite small, right? Not quite 3 months adjusted. If that's the case, there might not be specific things that therapists can work on that this time (if baby is eating and sucking well and doesn't show any side preferences). But babies change quickly at that age. 5 months adjusted is a completely different world, so you might want baby re-evaluted then.

The one thing that I would recommend is not letting them "discharge" baby at this time from the program, because then you have to do all of the paperwork all over again.

Our son needed OT therapy at 2.5 months adjusted b/c he did have side preferences (caused by torticollis) and he did have feeding issues (sucking problems). But if he didn't have those, he wouldn't have needed a therapist until a couple months later (got a PT around 5 months adjusted). So I suspect that it is possible that your child is doing well right now and thus doesn't require a specific therapy at this time, which is great.

The important thing is keeping him monitored, so that he continues to thrive. Unfortunately, with extremely low birth weight children and micropreemies especially, problems can crop up late. My son (25-weeker, born 1 lb 3.65 ozs) is doing incredibly well. He's 15.5 months adjusted, walking, talking, climbing, paying attention to books, looks fantastic. But we know that he is still an "at-risk" child. We've scaled down on the therapy but we still meet with a PT every two weeks just to monitor him. We see the OT every three months for evaluations. I suspect that he is going to pass with flying colors at his next evaluation, so we want stretch the evaluations out to 6 months.

Best wishes.

• Reply

• By brneyedgrl827
• Posted December 2, 2008 at 4:00 am
• Report post

tough economy or not, children should not be the ones made to pay. our state (nevada) has overspent billions and so our EI administrators have been instructed to "refrain from assigning eligible children to a service coordinator/teacher for ongoing services as a measure to save money; even though, there was and continues to be availability on service coordinators' caseloads to serve children and their families."

such a pity. i will definitely be writing a letter to our legislators. is it any wonder why nevada was ranked the 49th smartest (or 2nd dumbest, whichever way you want to look at it) state in the nation?

• Reply

• By leakeama
• Posted December 2, 2008 at 7:52 am
• Report post

First of all that is great, the therapist think your child is doing great and it is possible. But I have to agree w/you and everyone else. Don't give up and tell your coordinator! We had the same situation as well our former PT wanted to drop one of my sons. We decided to go behind her back and got him reevaluated by someone else and sure enough there are things he needs to work on. Compared to my other son he is doing good, but not compared to children his own age. Needless to say the PT is gone and we have a new one (who also agrees). I think it is important to stay ahead of the game. We have other therapys that I have been told I can not have and I am really mad about the situation and still fighting for my childrens rights. Good Luck!

• Reply

• By momof24weeker
• Posted December 2, 2008 at 9:23 am
• Report post

From my experience EI varies from state to state and within states, from county to county.

The only advice I have is when you have him evaluated ALWAYS have the evaluation based on actual age. As a 27 weeker, he clearly has to be delayed (nothing wrong with this by the way - it's normal) and is more than likely not doing the things his full-term, non-hospitalized peers are doing.

Keep fighting! You are Eli's advocate and if you feel you need help there are advocates out there you can hire to help you get the services. Recently, I've taken my daughter for private therapy which doesn't cost anything due to her medical assistance becuase she was a 24 weeker. There are other avenues too but I really think EI when used properly is a fabulous tool!

Good luck and keep fighting!

Melissa
http://pregnancyafterpreemie.blogspot.com

• Reply

• By jturner1228
• Posted December 2, 2008 at 10:39 am
• Report post

My son was a 26 weeker who when evaluated for EI was told didn't qualify for therapy at the time. Which I was very excited (and scared about). They did follow up about 4 months later and said he still didn't qualify. We do go to a Neonatal Follow Up Clinic roughly eery 6 months that our state has but he has never recevied any EI and is now right on track in all areas based on his adjusted age and in many his actual age.

That is not to say that you shouldn't fight for you little one. If you have concerns you should certainly battle until you are satisfied and/or feel comfortable. We

• Reply

• By BarbaraK2U
• Posted December 2, 2008 at 12:19 pm
• Report post

Two things: don't let him be released from the EI program (as the others said above). Insist on seeing the testing results and what basis they have for claiming he doesn't need EI to see how he's being evaluated, then demand a re-evaluation in 2 to 3 months. Emma started EI when she was 6 months actual (3.5 months in the NICU, plus 1.5 months out in the real world getting settled into our home). That just happened to be the soonest we could arrange to have it begin. Low muscle tone, poor reflexes...whatever...can qualify an infant.

Second, if they DO try to discharge you or if you feel that he really does need EI at this time and the evaluation just doesn't track with what you see and know about your son, then pay to have an independent evaluation done and contest their decision. If they're playing games with you, you'll find out quickly once you can refute their evaluation with an independent professional's evaluation.

Good luck!

• Reply

Add to the discussion