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ealouie
04-13-2009, 04:55 PM
Just a little story of frustration and disappointment...

Today, Carmen had her annual IFSP meeting.

I was told her eligibility was being re-evaluated because she is not eligible under the classification of "ventilator dependent." I was told that she had to be on a ventilator 24/7. She is dependent on a ventilator when she sleeps. So by my definition she is ventilator dependent.

Another way for her to be eligible for services is to have a developmental delay. Her main deficit is her speech and has an expressive language delay. However, I don't think the test they have will capture her speech delay and for kids under 3 they don't do a separate test for speech.

So, I anticipate her services will end after they assess her. At present her services are speech therapy (1x/wk) and "school" for 3 hours/day.
She has been attending school since Jan and it's been great for her to socialize with her peers. They have playtime, an art activity, circle time (reading stories and singing songs), outside play, and lunch. Fortunately, her speech therapy is covered by our insurance.

JWorthington
04-13-2009, 06:12 PM
I'm sorry Liz, this just sucks. Is there anyone that can write letters/reports that will help. sorry, I'm not much use as I don't know how things work on your side of the pond. Here in the uk a child with special needs/medical needs of any kind is assessed for a 'statement' Many individuals submit reports and this gives some indication of the amount of support . As you say, she is dependent on the vent when she sleeps and having a trach means she is dependent on trained care at all times. I hope you can find someone to listen. Are you able to put something in writing yourself about her needs?

good luck
Julie

faywrayy
04-13-2009, 06:15 PM
Things are definitely different here in NJ. To remain in the services of EI, a child need only be under the age of 3 and have a 33% deficit in capability (speech, physically, etc). Kate was covered fully until decann, at which point she was re-evaluated (and not because of decann, just happened to be up for review). She'd been receiving Speech Therapy in the home 1x/wk for 18mos and PT 2x/wk for 19mos. She was discharged 6 weeks post decann. I'd ask for a re-evaluation. Im sure she has a delay because of her trach adn that should qualify her. Good luck!

suzanne2545
04-13-2009, 06:19 PM
Here in MI, my son who only has a speech delay and he is in EI. I'm not sure what (if any) percentage delay is required.

I would recommend trying to find out some specific details about the program in your state and perhaps enroll the help of an advocate.

Here is another "food for thought" as our kids are close in age. Parker was born in November of 2006. EI ends at age 3. In MI, at least in our school district, the services are on summer break with the school system. Since school starts in September and about 5 weeks later, Parker will turn three and then need to go into the other program, I've already inquired about fast tracking him into the new program. He's been approved to start in the new program at the beginning of the school year before he turns three. Perhaps you can do something similar.

Ainsley's Mom
04-13-2009, 10:49 PM
Did her health status change or was it all due to a misunderstanding? I don't recall if she used to be on a vent during the day. I'm hoping that it's just procedural. I can't imagine if she qualified for services before they would take that away simply because the vent use isn't 24/7.

I don't want to say I hope she tests lower than you think, because if she tests high that's good (for her development). But I do hope she can stay in the program to get the services she needs. :hug:

cherienz
04-14-2009, 10:09 AM
Our system here is so different, so I can't talk in your language. The only point I would like to offer is that we have always focused on the 'negative'for assessment when it comes to therapy input and funding.

This is horrible to suggest, and I hate reading reports that focus on the negative, but from our experience when we write what we get excited about it doesn't help us qualify for any support.

Our son is sleep, ventilator dependent, and that only qualifies him for overnight care. BUT, his Global developmental delay as a result of dependency helps for daytime, therapy hours. WE always have to fight and negotiate for more. Yeh, focus on the negatives of speech, mobility issues etc. We never tick the usual boxes due to uncommon problems, so we are always a test case.

The fact I would always argue is that developmentally they say kids first 5 years are the most formative. THIS is when they need the input.

Fight as much as your energy allows.
Cheers Cherie

TommysDad
04-14-2009, 03:58 PM
Your child still has a trache which in my mind still makes your child qualify based on medical needs alone, no delay necessary. I'd argue that till the day I died! Get your EI coordinator's boss involved, go to a third party mediator (that the state must pay for), and keep climbing the ladder per your "parent's rights handbook" and advocate that your child gets what you know she needs. Contact a parent liasion in your area as well. They've already fought the same battles as you. So, you won't have to waist time, energy, & lots of frustration trying to re-invent the wheel for how to advocate for your child. Keep at them until your daughter gets what she needs because obviously your EI coordinator isn't doing that!