I just thought I would make sure all the families out there are aware of Early Intervention and that it is available for you. A diagnosis of cystic fibrosis automatically makes you eligible for Early Intervention services. Early Intervention is for kids from birth to age 36 months. EI is a federal program available in every state, in every area. It is FREE, no co-pays. You do not have to go anywhere, we come to YOUR HOUSE. EI services include speech therapy (that's moi), physical therapy, occupational therapy, nutritionists, nurses, social workers, counselors for the entire family, parent groups, etc... When the kiddo is close to age 3 we get you all set up with the school department if necessary or any other services you might need. It is an excellent support system. If your kid is over 3 they can still refer you to other resources in your particular state that can help with all kinds of issues, from housing to home care to WIC. Any kid with any concern can be referred to see if they qualify for services. Most who are referred do. Prematurity is also a qualifier (I hope you take advantage, Julie!) If anyone has any specific questions, I'd be happy to answer. Basically, therapists come into your home and teach you how to be the therapist for your child. I just want to get resources out there!!
Early Intervention
- Thread starter katyf13
- Start date
Katy,
I just put in a call yesterday to EI for Danny(2) to get a speech eval. He semms to be a bit delayed, not sure it its just him or he really needs some help. Are there any big signs that you can point out to me that would mean he would need some extra help? He had his hearing checked last week and that was fine. Thanks for any help!
Nicole
I just put in a call yesterday to EI for Danny(2) to get a speech eval. He semms to be a bit delayed, not sure it its just him or he really needs some help. Are there any big signs that you can point out to me that would mean he would need some extra help? He had his hearing checked last week and that was fine. Thanks for any help!
Nicole
We had this for Jazmine. Our local Department of County Nurses thru Social Services actually contacted us. SHe was eligible because she was delivered early. She had no "problems", but this was to make sure it stayed that way. They came a few times until I believe she was 2ish.
It's called the "Right Track" program in our area. When we first met with the social worker at the local CF clinic, she told us there weren't any programs available for assistance, but then kept pushing us to have an evaluation from this group. But the way she presented the information was very off-putting. She kept insinuating that DS was slow because he didn't crawl yet. Which really bugged me because crawling isn't considered a milestone. DS, just went from rolling around, to creeping around furniture to RUNNING! And the brochure she gave us seemed to focus on physical development issues. Maybe if the social worker had presented it differently and hadn't talked down to us....
It's called Early On in Michigan. We took advantage of it with Abby and what a blessing it was. We didn't need any therapists, doctors, etc, but I was more than happy getting the assistance with Abby's Pediasure for the first years. She drinks 3-4 cans a day and the Early On program re-imbursed us until she turned three.
Early On also has a mileage allowance that reimursed us for driving to/from anything CF related like going to clinic and the pharmacy to pick up meds.
Early On also has a mileage allowance that reimursed us for driving to/from anything CF related like going to clinic and the pharmacy to pick up meds.
CFHockeyMom
New member
I'd kind of forgotten about this... Like Sheri said, it's Early On in Michigan but whatever it's called in your state, you should take advantage. We were worried about Sean's speech development and were afraid he'd suffered hearing loss due to the antibiotics he was on when he was first diagnosed (primarily Gent.). Anyway, they came and gave Sean a developmental eval. as well as a hearing test. Turns out he was just fine. What a relief that was.
If I remember correctly, when Sean was first diagnosed, our social worker sent a person down from Early On, while we were in the hospital, to talk with us and get us signed up for the program. They followed up with us every few months or so to see if we needed anything and to remind us of all our benefits. My brother and sis in-law recently had a premie and my mom tried like crazy to get them to sign up but they wouldn't. How foolish!<img src="i/expressions/face-icon-small-confused.gif" border="0">
If I remember correctly, when Sean was first diagnosed, our social worker sent a person down from Early On, while we were in the hospital, to talk with us and get us signed up for the program. They followed up with us every few months or so to see if we needed anything and to remind us of all our benefits. My brother and sis in-law recently had a premie and my mom tried like crazy to get them to sign up but they wouldn't. How foolish!<img src="i/expressions/face-icon-small-confused.gif" border="0">
Hindsight, we should've signed up. The social worker kept mentioning that someone would come to our home to see how DS was "tracking" developmentally and specifically mentioned the crawling issue. We'd had hearing and developmental tests at the hospital. Guess it was the way it was presented to us and the literature provided to us. Liza
That's unfortunate that it was not presented well. I can vouch for the system in Rhode Island. I think specifically cfers can benefit from the feeding/nutrition portion. We can give some ideas on how to pack in calories, how to make food fun, stuff like that. (I will write another post soon about that).
Another thing I think is important personally, is the hearing evals since cfers do take antibiotics, and the fact that congested sinuses can contribute to fluid blocking up in the ears. The hearing screening at birth only screens a very small portion of the auditory system. I see too many parents who think it is an actual hearing test. EI provides full hearing evaluations free of charge. (I sound like a commercial... haha)
Nicole, every kiddo is different obviously, but the average 24 month old has about 50 words (give or take) and is just starting to put 2 words together. Sometimes kids are just late talkers and if he does qualify for EI, they can defintly help you expand his vocabulary.
-Katy
Another thing I think is important personally, is the hearing evals since cfers do take antibiotics, and the fact that congested sinuses can contribute to fluid blocking up in the ears. The hearing screening at birth only screens a very small portion of the auditory system. I see too many parents who think it is an actual hearing test. EI provides full hearing evaluations free of charge. (I sound like a commercial... haha)
Nicole, every kiddo is different obviously, but the average 24 month old has about 50 words (give or take) and is just starting to put 2 words together. Sometimes kids are just late talkers and if he does qualify for EI, they can defintly help you expand his vocabulary.
-Katy
I think this is the site for Georgia...
<a target=_blank class=ftalternatingbarlinklarge href="http://health.state.ga.us/programs/childrenfirst/index.asp
">http://health.state.ga.us/prog...ildrenfirst/index.asp
</a>In most states it is the department of public health or the department of human services that handles EI. In Rhode Island it is DHS. Good Luck!
-Katy
<a target=_blank class=ftalternatingbarlinklarge href="http://health.state.ga.us/programs/childrenfirst/index.asp
">http://health.state.ga.us/prog...ildrenfirst/index.asp
</a>In most states it is the department of public health or the department of human services that handles EI. In Rhode Island it is DHS. Good Luck!
-Katy
When Aidan was diagnosed through newborn screening, somebody contacted me from a Socail Services department. He was fine at the time and I haven't heard from anyone since. Do I just call them and ask for Aidan to be evaluated? He is doing quite well but is a little behind in speech which of course has nothing to do with CF. Thanks Megan
IT's interesting that you say cf and prematurity are both automatic qualiafiers. My dd is both, and I had to fight to get the 0-3 program to enroll her. She came out good on thier assessments, but I saw physical/gross motor delays. We got her in, and our PT is great, but the administration of the program is shoddy. We also pay a hefty monthly fee. It's supposedly based on a sliding fee scale, but to me, what we pay for 1 1/2 hours of PT a month is outrageous. I agree, its a great program and hope everyone takes advantage of it, but, I don't agree that it's free just bvecause its a fedral program.
I guess I was wrong about some things. It is federally mandated that services be available for 0-3 but I guess it's run differently according to states. Rhode Island is ahead of the game. It's all free (to everyone) and we offer every available service, including infant mental health (counseling for families in crisis), which is not available in many other states. We will monitor preemies and kiddos with a medical diagnosis even if they are totally fine just to make sure they stay on track developmentally. I've peeked at what other states offer and it makes me angry. So much room to fall through the cracks. So I'm sorry I based my thread on my state without looking into other states much. I guess since Massachusetts and Connecticut are similar I assumed all were. Sorry!! (But still fight for what you need. The services are out there)