Early Intervention

[Anonymous]

Hi All,

In the state of CT our early intervention program charges our insurance companies for services, and then, on top, charges families on a sliding scale fee for early intervention services. We are charged depending on our income, regardless of our bills, and regardless if we receive 1 hour a month or 100, we are charged the same rate only based on income.

I am very frustrated at the moment with this issue and plan to raise the issue with our local legislative representitive to have this abolished. I am being told by the state that this is according to the federal guidelines for each state, so they can charge, (double dip) but it is up to each state to decide if they do so.

I realize these services are an enormous burdon on the state budget with many more preemies surviving at earlier gestations and injured children with greater chance of survival, then the burden on the therapies and services for children have been increasing over time placing a larger burden on the state budgets, but I am not sure this is the right answer.

I was curious as to what other states are doing with their EI services.

Thanks in advance!

Ann Marie

[Anonymous]

Ann Marie,

I don’t know what VA does, but I will def check into it with some of my friends who are therapist and get back with you with what I learn.

[Anonymous]

Thanks Beth. I am just so sad that this is the way it is. I do make a decent salary, but with nanny troubles, David is home now with the boys (going back in the fall though) so our income was severely cut and we are on the hook for several medical bills (the insurance company decided that our genetic testing was not stuff we could cure or help Carter with so it wasn’t “medically necessary”) so they stopped paying and we are on the hook for those. Also, the copays, and then the deduction from my pay for medical insurance, increase cost of electric and oil, etc, etc… we just can’t keep contributing especially when we provided our insurance informaiton, and the insurance is paying as well! Probably not the full cost, but then where are my taxes going?

Anyway, I am pretty fired up about this for Carter’s sake. And for all other middle class working families that are in the same boat we are. If we don’t pay, Carter gets no services, etc…..

Anyway, I am extremely supportive of the fact that some people’s income is not enough to contribute and their children should get all the services they need at no cost, and if we could afford it, I would contribute, but our sliding scale fee doesn’t take into account our bills as well, so they are just using an arbitrary number to decide how much we can afford.

OK, I could go on forever as I am so steamed about this, but would love to know what other’s states are doing.

Thanks!!

Ann Marie

[Anonymous]

Ann Marie,

I am not too sure if this was EI, but we had Kaden’s speech evaluated last month by the state to see if he was on track. He has problems pronouncing certain letters and he’s difficult to understand and gets frustrated. The service was completely covered by the state. They did not charge me a thing or ask for my Ins. info. I am in the state of MD.

[Anonymous]

Hi Jill,

Typically all the evaluations are free as well as writing a plan, etc, but actually receiving the therapies is what they are charging us and the insurance for even though it is a state funded program. So, I would think that part should have been free, but do you know if you got therapy if you would have had to contribute?

Thanks for your response!!

Ann Marie

[Anonymous]

Ann Marie,

I don’t know because of receiving services myself, however my SIL who has a severely hearing impaired child (nearly deaf) received services for 3 hours a week. Itinerant came to the house for 1 on 1 for 1 hour, ST at the center for 1 hour in group, and group play for social/emotional for 1 hour. She was never charged anything and was reimbursed for milage. They just transitioned him over for pre-K and she has had a hard of a battle as I’ve had with Aidan. I can also tell you when I called EI for Aidan when he was 2 1/2 for services I was refused with the excuse that he was almost 3 so let the school system deal with it. I really regret letting that one go but hindsight is 20/20! Hope this helps! Take care!

[Anonymous]

Oh Amber, how are you?!? OK, Alyssa is going to be 9 this year! OMG! I remember when you had to make the decision on starting Kindergarten or not with her!!! It has been so long!

How are you doing? How are the Kids? your hubby? Wow! Can’t believe we joined this site 5 years ago! OK, now I feel old!

SOOOOO good to “see” you!!! and thanks for the info. I am going to go armed to my state rep! I just can’t believe how many children that really need services are not getting them because of their parents’ inability to pay and this is so not OK with me!

Keep in touch!!!!

Ann Marie

[Anonymous]

Ann Marie,

Thanks so much for asking! And yes I do feel quite OLD! Alyssa is now in second grade and just made 1st Communion yesterday, active in softball although she’s still quite a girly girl. We are still delving into her ear problems and just completed RAST testing (results aren’t back) she wasn’t too pleased with the 5 vials they took! So possibly another surgery for her.

Aidan is progressing greatly. 2 years and $25,000 and counting of Speech. He will have his second year in special needs preschool next fall and he has made great strides this year. At 4 1/2 his speech is still about a year behind but he is understood more at home and is very comfortable talking with us.

Brock (dh) is also good. His company merged with The University of Toledo and they are working with McGraw Hill (the textbook company) for a college product called “anatomy revealed” here’s a link:

http://www.amazon.com/Anatomy-Physiology-Revealed-Version-2-0/dp/0073378070/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1210005488&sr=8-1

so it’s been great as they are contracted till 2013. Good job security!

I am doing well. Still SAH working with Aidan, so tell David I feel for him, I know it’s hard! I’m gonna look and see if I still have your email and I’ll send you pics of the kids.

So sorry to hear that your having to fight so hard for services. I’ve been battling my ins for 2 years and it’s not fun. To have to choose between being able to live and providing your kids with the help they need is no choice! Another thought have you checked with your county MRDD? Aidan is considered DD because of speech and they have “service and support administration” which will provide you with an advocate. Also there (at least in Ohio) is family funding where you get approval and then are reimbursed after turning in your receipt. In OH you can get $1000 a year, not much but helps some. May be worth looking into. Keep fighting the good fight, your a wonderful mommy! Take Care!

[Anonymous]

I know I’m contributing to this thread late, but just wanted to chime in b/c a) my son gets services & b) this is my background (special needs, autism, etc). We are in Florida.

Brodie has received EI services since 12mths old. Initial Speech, OT & PT overviews were w/ EI in our home & no insurance info was asked.

The actual evals & services are @ therapy centers (well, we have the option of home therapy, but I prefer to just take him in) & they (try to) bill insurance 1st but then will bill EI 2nd. No $$ ever from us.

He still receives services: speech (2x/wk), OT (2x/wk) & hippotherapy (therapeutic horseback riding) (1x/wk) & again, we haven’t paid a cent. It is such a great program & I’m sad to hear that other states aren’t doing the same.

[Anonymous]

Thanks Erin,

It is really sad here. I think they try to do a good job and our PT who is also our coordinator really knows her stuff and is the BEST ever, but the way our state structures it really sucks!

Right now, David had left his job at Thanksgiving because Carter was really moving forward and needed more from us, so we were down one income and then with the prices of Gas, etc.. we are struggling a bit now. We have fallen behind again, and they are suspending our services even though our insurance still pays. They decide how much we can pay, regardless of what our bill are, etc…so we no longer are getting services starting August 1 because I am making a choice to keep a roof over their heads and to put food in their mouths instead of paying more money to the state of ct that I already pay excessive income and gas tax to. It is really sad. If I quit my job, and choose not to work, then I can get all services my child needs for free. Awful, just awful…

I have called my state representitive and the governs office, with NO response. We put our house on the market and we are looking for houses in Vermont. It is just so sad that a state has such little regard for children if you are in a middle class family.

Can you tell how upset this makes me?UGH…..

I can get so fired up about this it is not even funny… As if Carter has not already been though enough. We filed our lawsuit with the Vaccine Injury Compensation Fund wiht the government to ensure a trust for Carter if he can’t live a normal life as it is now, but that can take years and everyone knows that early intervention is the most successful with helping and teaching children to overcome some challenges as their brain is still developing and so other parts can take over the funcitons that are damaged.

OK, I am done rambling, but I am so upset for Carter…….

[Anonymous]

I’m going to PM you

[Anonymous]

Ann Marie, i am pretty late to this as i did not see it before.

NY state is actually wonderful for special needs services… we have wanted to move to CT but will not do so especially for the reasons you are mentioning.

NYC and Westchester are very generous. We are in Westchester now. Matthew is now in CPSE but i can tell you how EI and CPSE both work.

EI in Westchester – matthew received OT, PT, SLP and special instruction in special needs school (so 2.5hrs, 5x per week). The state bills our insurance company and whatever the insurance company does not cover, the state covers. We did not have to pay anything at all for all the services and they were very generous – OT 2x per week, SLP 4x per week and the school.

Matthew is now under CPSE and receives school, 2.5hrs, 5x per week, 2x OT per week (the rest we do privately)… again, have not seen a bill or have had to pay for any co-pays etc. Like i said, Westchester, and some disctricts in general are very very generous with special needs kids. I have heard not so good things about CT and again, that is the reason we will not move, but mainly not good things about EI, nbot sure how CPSE works?!

NJ also has a sliding scale but it works a bit differently for EI – i do think that it is based on income but also based on the hours that you receive.

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