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Possibly Relocating!!!

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we live on Long Island, and use drs in NYC. New York has a great medicad

waiver program,, some have wait lists. THey have a medically fragile program

and a custodial program.

Our school district is great, not all in New York are, i actaully know

several familes that have moved to our district b/c of the schools - from the

city! We live in Suffolk County on the North Shore.

Columbia Babies Hospital is in City, they have a lot of speciliasts, i

believe rated #5 in the country.

We use NYU for our ENT b/c of issues at Columbia, but all other drs are at

COlumbia, and they have other CHARGE kids.

Feel free to ask any more questions.

Cathie mom to 11 yr CHARGEr

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Help,

My husband's firm is asking him to relocate to NYC. I would probably

try to move to CT or NJ, but does anyone have any info on Medicaid

waivers, good school districts for special needs children, hospitals,

doctors, etc.

Thanks,

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Hello Kim,

We live on Long Island which is about 35 miles outside of NYC. We

would be happy to share our list of 's doctors and specialists

with you. (Just email me privately at mpmcd@... and I can

send you the list. A number of them are located at Columbia Children's

Hospital in NY (CHONY). We have been happy with the hospital and I

believe they rank about 6th in the Nation. There are some other

wonderful hospitals and specialists right in the City as well. As far

as school districts in NYC, I do not know a great deal. Re: Medicaid

waiver in NY, If you like I will call my case manager and see if I can

get a phone number or information for you.

(mom to CHARGE 3 years old in April!, 6 years old,

wife to Pat)

New York

>

> Help,

>

> My husband's firm is asking him to relocate to NYC. I would

probably

> try to move to CT or NJ, but does anyone have any info on Medicaid

> waivers, good school districts for special needs children, hospitals,

> doctors, etc.

>

> Thanks,

>

>

>

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Hi ,

and I live in CT...

Since CT is so small the number of children with CHARGE is low....We know 4

families and there are a few more...it was once said that the number of children

with CHARGE in CT was around 26 but I am not sure of that number....

So for educational purposes it would all be breaking new ground and that is

where we are here in Seymour ...if you wanted to move to Seymour we can work

together. Several towns in CT have good marks for their special educational

programs however they are programs for children with Autism or on the PDD NOS

spectrum.

There are only 2 options for hearing impaired habilitation...BUT the good news

is that we are only a 2 1/2 hour car ride from Perkins School for the Blind.

Let me know where you were thinking....I grew up in Monroe CT and lived in

several other towns around....

Good Luck

Ellen mom to 9

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I dont know that area but good luck with everything, I know I always

want to move out of the area but I am also nervous because then I

would have to start all over with new doctors and everything.

I hope you get all the answers you need.

Crystal mom to (11), (3), and Eva (20 month old CHARGEr)

wife to Dan in Illinois

>

> Help,

>

> My husband's firm is asking him to relocate to NYC. I would

probably

> try to move to CT or NJ, but does anyone have any info on Medicaid

> waivers, good school districts for special needs children,

hospitals,

> doctors, etc.

>

> Thanks,

>

>

>

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There are a lot of good schools in NJ. I would assume you would want to be

in Northern NJ closer to the city. Bergen or counties are the best

as far as location of schools and services. Bergen is the best county and

is closest to the city, and is also more expensive. We live in

county. We go to Columbia Presbyterian - Babies Hospital in NYC mostly but

have some doctors in NJ, as some work out of NYU and Columbia also.

My son does have the Medicaid waiver program. If you live in NJ but need

services in NY you just have to get out of state approval. Not one doctor

we see accepts Medicaid but it is great for all the outstanding hospital

bills and medications. It took us a while to get all the paper work done.

There is also the division of developmental disabilities which we get

services from as well as the commission for the blind.

There is a wonderful camp my son goes to for 2 weeks out of the year, as

does Timmy, Halloran's son. It is for visually impaired kids. You

must be receiving services from the commission for the blind to go there.

You can't even pay for it, it is strictly for these kids under this service.

Hope this helps.

Debbie Matasker mom to w/CHARGE 9.5, 12, andra 7

Possibly Relocating!!!

Help,

My husband's firm is asking him to relocate to NYC. I would probably

try to move to CT or NJ, but does anyone have any info on Medicaid

waivers, good school districts for special needs children, hospitals,

doctors, etc.

Thanks,

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hi, I am Tim's mom that deb mentioned. we live in warren county--the furthest

west you can get. and the schools around us are good, but not our town. Tim

goes to lakedrive for the deaf and hard of hearing as do a couple other kids on

the site. it is in mountian lakes school district--top 3 in the state. we have

drs in philly at chop --ped. is local also have a ent local for the ear wax.

ocularist is north jersey, orthopedist near princeton, we are with the comossion

of the blind as deb stated also ddd and special services through the arc of

warren, tim also goes to a camp through the elks--camp moore.

think that's it..

Possibly Relocating!!!

Help,

My husband's firm is asking him to relocate to NYC. I would probably

try to move to CT or NJ, but does anyone have any info on Medicaid

waivers, good school districts for special needs children, hospitals,

doctors, etc.

Thanks,

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Ellen,

Are there any Medicaid waiver programs in CT? Rebekah is on one that covers her

nursing, formula, and diapers. What about any other assistance?

What about hospitals and doctors? We are coming from TX Children's, which is

about the 4th best pediatric hospital in the country. I've gotten very spoiled.

I am also worried about her getting sick alot. Do kids with trachs fair worse

in the north? Here in Houston we are still seeing 68 degree days sometimes.

What about education? Right now Rebekah is homebound - her AI teacher comes to

us. How do they work with special ed?

We are looking toward the south around Milford, West Haven, Bridgeport since my

husband will have to commute to NYC.

Thanks for your help.

Mom to Caitlyn(13), Rebekah(9yo CHARGER), and Colton(7)

Re:Possibly Relocating!!!

Hi ,

and I live in CT...

Since CT is so small the number of children with CHARGE is low....We know 4

families and there are a few more...it was once said that the number of children

with CHARGE in CT was around 26 but I am not sure of that number....

So for educational purposes it would all be breaking new ground and that is

where we are here in Seymour ...if you wanted to move to Seymour we can work

together. Several towns in CT have good marks for their special educational

programs however they are programs for children with Autism or on the PDD NOS

spectrum.

There are only 2 options for hearing impaired habilitation...BUT the good news

is that we are only a 2 1/2 hour car ride from Perkins School for the Blind.

Let me know where you were thinking....I grew up in Monroe CT and lived in

several other towns around....

Good Luck

Ellen mom to 9

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,

I am 15 minutes from Milford....Seymour is a small town with 3 elementary

schools.

We have a train station that can get him to NYC for work...not directly

however he could switch in Bridgeport.

Yale is the hospital we use and you would be close from any town you are

selecting.

In Ct we have a program call Children with special health care needs. If it

funded through the health department and is a payor of last resort...however

they are known to pay for diapers, hearing aides, formula etc. Nursing care

here is at a shortage...but I would be happy to help you research that.

What grade is Rebekkah in? is nine too!

Bridgeport schools are in serious trouble. They are ill-equipped to handle

typical kids and fail miserably for our children with special needs.

West Haven schools are OK....they are much larger... typical class is 27...our

sister school is in West Haven and visits his pen pal 4 times per year. We

have a new student that has moved to Seymour due to the violence in his West

Haven elementary school.

Milford gets very high marks for their attention to children with special

needs. They are progressive in their mindset....as for the typical student they

are very average. Plus side Milford is growing rapidly ...Malls , tons ans tons

of shopping. Great family restaurants...very close to one of my favorite

stores....Christmas Tree Shop...lots of things I don't need but love to buy...

Seymour could still be an option or Shelton....Schools good with special

needs...

There is the Becket Waiver....we are still on the waiting list somehow.

Currently the weather is around 50 degrees....yes we do have cold winters

here.but knock on wood has a great pediatrician...located one town over

from Milford in Orange...

misses very few days of school. Our school nurse is so proactive about

germs and illnesses in our school....she often alerts me if there is a bug going

around..

Let me know what I can help you with....We have many new houses being built

right now...If I can send you more information please let me know....

Ellen mom to 9

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