Friday, December 4, 2009


Ok so I need all of the people who read this blog (hopefully you're still coming to visit) that have a special needs child to comment on this post.

If I could possibly move to whatever area in the US

Here are the questions:

What is the best area to move to for a special needs child?
Which state programs are better?
Which schools are better, hospitals/doctors and therapist?
(If you can give me the program names so I can inquire)

What is the cost of living like, the job market?

Even if you have never posted a comment before, step outside the box, and speak up....I need voices here...

You can post without having a blog on your own, you can keep your name to yourself, just give me your opinion.

This is all of course just hypothetical right now, but if for some reason in the future I need to I'd like to know if people are still coming to visit here! ;)

And IF you have done this yourself, what was the experience like?

Thank you!


The Henrys said...

I admit that I haven't been here in a while, but I do check back when I get the time. I enjoy your blog and reading about your wonderful son!

I am in MI and I do not reccomend the Lansing area. There are no doctors there. We live a little south of Lansing and I am traveling to Grand Rapids, Jackson and am looking in to Detroit and Ann Arbor.

There are no groups for kids with disabilities or groups for the parents. At least, not that I am aware of.

We do have a wonderful genetic group through MSU. They are truly wonderful and have been there from the beginning with my daughter. They go above and beyond for us and I am so grateful.

I am looking for a pediatric ophthalmologist and a neurologist. I saw in your last post that you love your neuro. I hope you don't mind, but would you tell me who that is? We have gone through two and I am not very pleased.

Take care and thanks for writing your blog. I have learned a lot here!

Deana said...

In 2008 we moved from Colorado, to England, back to Colorado, to California, and then back to Colorado. :)

As it turns out, it's hard to get away from the care you're used to when you have a child with a very rare disorder.

I found this page to be informational about comparing states:

Jessica mommy to Alex/ RTS said...

Illinois isnt very good. I have a friend in south carolina, and she raves about how good it is there. Im pumping and bouncing Max or I would say more.

AshleyS said...

We have been more than blessed with an easy road in Arkansas. The Children's Hospital has been wonderful (on the whole) and the Medicaid/TEFRA system has been a Godsend for us. We still have snags and loops to jump through, but nothing near like the nightmares I've heard of in other states!

abby said...

The Philadelphia area has some real pluses and a few minuses. Pluses are:

1. If you have a disabled child, including intellectual disabilities, you automatically qualify for medicaid in PA, regardless of income. It's called the PA 95 loophole and it's been a godsend for us because it makes some very expensive therapies possible.

2. Children's Hospital of Philadelphia. The best in the nation for a reason. We don't love all the doctors, but most of them are fabulous. We adore pulmonology, developmental peds, ophthalmology, and have had good experiences with our regular ped, ENT, and for the most part GI. Only visited orthopedics once but no problems there---just not much experience. The therapists (in OT) are fabulous and from what I can tell, speech and PT are very good. Care is very coordinated so one specialty can touch base with others, see their files, etc.


WHile the city is extremely livable and very affordable by east coast standards, the schools in Philly (as a system) suck. Come school age, we will have to move to the near suburbs (lots of parents who for one reason or another are not going the private school route have to do this. We have a very good private preschool for Hallie and the therapists who come see her, with the exception of speech, are quite good and the school district is paying for this and she has a one-on-one aide.

2. Early intervention is better in places like NYC but then it's really hard to qualify for medicaid there for your child. So it seems like a fair tradeoff.

Drop a line to me if you want more info on Philly and its suburbs!

Kristina said...

We live in DE, but are considering a move to PA. Just over the line for a shorter commute for my husband to work. The nice thing about this area is there are some great places for the kids for doctors. There is CHOP (I see someone else already commented, so I won't add to it) and DuPont. We use DuPont and just LOVE it there. I mean, we'd rather not have to go, but since we have to go somewhere, that is where we choose. And, my sister is a nurse at CHOP so we did look there but preferred DuPont for Emma.

There is also CHOP, NYU, and Hopkins in a very short driving distance from here (<2 hours for any/all of them) for easy access to second opinions. We like 2nd opinions, so have made use of these sites :-)

We haven't started schools yet, as Emma is only 2, but are looking at them now. Both DE and PA offer disabled children's Medicaid, but as far as I know NJ and MD do not. So, as we are thinking of moving we are not considering NJ or MD. In this area, PA is considered to have better schools than DE, but I'm not sure if that is the case for children with special needs. We're looking into that now and, truth be told, I am still muddling my way into trying to figure this out!

Anonymous said...

Less about services but more about cost of living...Texas gets some points for no state income tax.

I've been around a bit, too - TX, OR, WA, PA and WV. None perfect. Inasmuch as I've seen very good situations in rural areas, if you need specialized medical care, larger cities have more to offer.

I've seen a lot of individuality in every state - meaning, some do well while others struggle mightily.

This is a great question. Barbara

abby said...

NJ definitely doesn't offer Medicaid to disabled children on a regular basis. Also, according to a report I read last week, it ranks 50th out of 50 states for inclusive education of disabled students. So, if that is of concern, PA is a better choice than NJ. Also, NJ charges for early intervention based on an income-calibrated sliding scale. I am not sure how expensive it ends up being but I do know that in PA we did not pay for services. Finally, property taxes are crazy in NJ and you end up using the hospitals in PA or NY anyway for anything important.

Anonymous said...

i work in early intervention/early childhood special ed, and have done so in wisconsin and oregon. both have good points and bad. wisconsin has a rockin' awesome secondary insurance called katie beckett that is only disability-need-based. income is not taken into account. it's AWESOME. have i mentioned that? unfortunately, in some counties, parents are billed for a portion of their child's EI services. boo. and some counties are really rural, with little to no access to even early intervention therapists--it's staffed through the local hospitals, and really, those people have almost no knowledge of pediatric therapy. sorry, but they don't. oregon doesn't charge parents for services, which is awesome. the only insurance they bill is medicaid. again, service quality varies by area of the state--much of the state is really rural. portland (where i am, though i work in another county) has excellent medical resources. excellent, excellent. lots of choices, etc. i think oregon is better than most, worse than some. i think wisconsin is better than many, worse than some. i also did some clinical work in anchorage, AK. seeing anyone medical there is an exercise in frustration--just go to seattle. early intervention in anchorage is a fabulous program. the rest of the state is very thinly covered, with a few exceptions. i can't remember if they billed the parents at all there. hmmm.
--liz the PT

Anonymous said...


wisconsin has decent cost of living, though the income and property taxes are high. on the other hand, they pay for an excellent educational system (for the most part, of course). i recommend, but i might be biased. :D

oregon's cost of living runs high, especially in the portland area. there is no sales tax, which is a nice bonus. the quality of life tends to be pretty good--it's a forward-thinking area of the country. but the rest of oregon can be a but don't most states have those areas? portland is great, and the suburbs are kind of affordable, and semi-great.

i loved anchorage, but it's not for everyone. you can access things better there than in the rest of alaska. cost of living is very high, since most things have to be imported. and you're quite isolated, if the rest of your family doesn't live there, and that can take a toll on a family trying to support a child with special needs. that said, it seems that friends in alaska tend to help out more than friends in other places!

--liz the PT

Heather said...

Hey, Melanie. We moved to Missoula, Montana a year ago. My son is only 20 months so he was diagnosed and began therapy here. I love, love Missoula. It has around 60,000 people and is an amazing little hub for culture and the arts. Great for adults and families too.

Because of the lifestyle we have some pretty good doctors. We really like our pediatrician. There's a pediatric opthomologist and an pediatric orthopedist that comes in from Helena once a month. We even have a world renown neuopychologist practicing here. People come from literally all over the world to see him. If you have a need of lots of specialist, this isn't the place for you. You will have to travel to Seattle, Spokane or Salt Lake City.

However, we do have a great Early Intervention program, good schools, and the most amazing physical therapist and speech therapist. I was talking to the pediatric orthopedist who moved from the Mayo Clinic and she said she'd never seen a physical therapist better than our dear Paula. Paula spearheaded a mother's group and once a month we get together for a night out. Sometimes our families get together but mostly it's just moms who get a chance to dress up and go to a fine restaurant for dinner. We usually close the place down.

For our needs, Missoula is wonderful. Some of my friends with more involved kids might have other opinions but there is a really nice lifestyle here. The cost of housing is a bit higher than you'd expect for this size town but if you can find a job here, it's great.

We have family in Oregon and Utah with kids with Downs and both have been pleased with things there. Cost of living in Utah is pretty good and you have access to a good health system with Intermountain Health Care and Primary Childrens Hospital and the University of Utah Medical School with the Moran Eye Center etc. Oregon is pretty good when it comes to getting services in the school system. They also have OHSU and Dorenbeckers Childrens Hospital.

Anyway, good luck with the potential relocation. Moving can be exciting but scary just the same.

Jacolyn said...

Although I would love you to move to Dallas, I'm not sure Texas has the best programs. We have great winters and, as Barbara stated, no state income tax. We eventually qualified for Medicaid through a loophole but not sure how long we will be able to keep it.

Anonymous said...

I see lots of votes for OR and indeed I loved living there. There's not much snow in the valley or on the coast but you can get to it easily. Being from the south, I would think life in the snow would be harder than life with longer hot summers.

For all the states that provide really good services or financial support to families - everything can change on a dime.

Amy Genn left a comment on the good and bad in WA here:

I have a post on Medicaid and waiver programs - both can be difficult to access - from what I understand, everywhere.

I loved living in the panhandle of WV also - not too far from Pittsburgh with good medical facilities and a little farther to Columbus OH.

We all patiently await any news on an upcoming move. Barbara

kate c said...

I live in Portland OR with my 2.5 year old with CP. I do love it here for may reasons but... I was recently told by a EI therapist that Oregon is one of the worst states for services. She told me the absolute best state in the country is New York. I haven't researched this as we aren't planning on moving any time soon but she was pretty adament about it... some examples are preschool would be free, 4 hrs EI a week, etc. I can't vouch for any of that.

Jennifer said...

Indiana! I haven't seen anyone talk about the Hoosier state! Here is the deal on Indiana...our medicad waiver program which is for family's who make too much money to qualify for medicad has a 12 year waiting list. Ugh! But we do have a children's hospital which is ranked 23 or something but the doctors there are okay. I prefer the doctors in Chicago because I think they are the best.

We have a community that has quite a few of children that our disabled. We have a horse area nearby, therapy centers, and group homes for adults with disability. I wouldn't say that our community is the best, but it isn't the worse either.

Carla said...

this is my first comment here & I have to vote for NY & TX. My sis is a social worker in the Albany area & raves about all that she is able to get & do for the kids she represents. Froim what I hear, the docs are good as well.
I also vote for TX. I LOVE Cook Children's hospital & its doc. As far as EI goes, I love ours. We do pay for it based on a sliding scale, but we only pay 20$ month & we can get as many services as they offer. If my hubby made 10,000 less per year, the services would be free.
However, in my county, there is very littel things for as diabled kid to do- but the churches in this area ROCK- I mean the emotional support I get is second to none.

JSmith5780 said...

Hey Carla, who is your sister? I live outside Albany!

After I saw Kate's comment earlier I knew I had to get on here and leave a comment. There is a lot great about NY. There is a waiver that would qualify Daniel for Medicaid. As long as he has no more that $2K in his name, your income doesn't matter. Both Austin and Connor have Medicaid, though Connor will most likely not qualify when he goes for final re-cert at age 7. At age 7 if they qualify, they are qualified for LIFE! We only waited about 6 months to get on waiver. I would guess in a "lower economic" county, the wait would be longer because Mediciad waiver and Medicaid are all processed out of the same offices. Our kids get caught up with everyone else.

I also can't complain about services. My kdis have never been denied any of their services, and Connor qualified for an integrated pre-school. Everything free.

For school age, I think it's really dependant on the district. Again, we've been very lucky, our district is great.

Now for the negatives. Although we have a children's hospital, and lots of great specialists, we have NO REAL ped epileptologist. We choose to travel the 3 hours to Boston. Many others travel the three hours to NYC.

And the big negative is the state of the economy here. Taxes are high. It's rumored we are one of the highest taxed states, but I can't say since I have never lived elsewhere. I can say in our area a 4 bedroom, 1500 sq ft house is $200- $250K. Our house is valued at $215K and we pay $6K in school & property taxes. Just to give you an idea. I have no clue how that compares to where you are.

Good luck. I can't imagine all it would take to relocate. Any questions, let me know.

EMBelieve said...

We live in NJ and all that has been said is true. To qualify for Medicaid you have to have very low income or you can live a certain lifestyle where you can't have more than $6,200 in assets. There used to be a medicaid waiver but not anymore, now there is a long waiting list. Property Taxes are very high.
Our son attends a very good private therapeutic school paid by our town and gets all his therapies there plus the school district pays for additional private therapy like MEDEK and hopefully PROMPT speech therapy soon.

NJ has the Catastrophic Illness in Children Relief Fund which provides eligible families with financial assistance to help them cover medical expenses that were previously incurred because their child became catastrophically ill or injured. Covered expenses include, but are not limited to, special ambulatory care, acute or specialized in- or out-patient hospital care, medical equipment, medically-related home modifications, home health care and medical transportation

General Requirements:
In any prior, consecutive, 12 month period, dating back to 1988, eligible expenses must exceed 10% of the family's income, plus 15% of any excess income over $100,000.
The child must have been 21 years or younger when the medical expenses were incurred.
The family must have lived in New Jersey for 3 months immediately prior to the date of application.

It is a lot of paper work but it is worth it.
For our son's neurologist we travel two hours to the Children's hospital of philadelphia.

JoAnn said...

We live in Los Angeles County, in Southern CA. California has a system of "Regional Centers" that are tasked with coordinating care for children who meet their criteria. They have different criteria for kids under three years of age versus over; I know Daniel is over three, and he would definitely meet the criteria because he has cerebral palsy. That's how Emma qualifies to be a Regional Center client too. They work with many other state entities, including California Childrens Services, which provide PT, OT, and other services to those who qualify. You can check this stuff out at

California has budget problems right now and the Governator has been trying to cut social programs and funding for health care (like a good Republican). But so far it hasn't affected Emma's care at all.

She is 3, she attends pre-school 4 hours per day, 5 days a week; we are not billed. She goes to a fabulous school that is specifically set up for special needs kids: Danbury Elementary in Claremont. We don't live in the Claremont school district but our school district (Glendora) was happy to refer her.

The local California Childrens Services office is actually located at Danbury, so Emma's PT and OT people can just come into her classroom and take her out when it's time for her therapy. We are not charged for her therapies.

We take Emma to Children's Hospital Los Angeles; there are so many AWESOME doctors there! We love her pediatrician, Dr. Suzanne Roberts.

Emma has MediCal because we adopted her (she's actually my biological granddaughter), but I believe that many children with serious medical problems qualify for MediCal. There's also the state insurance program called Healthy Families, but I don't know much about it.

Take care! I'm so glad you asked that question because we may be moving to Oregon eventually and a couple of people from Oregon have posted comments!

JoAnn said...

I just went back and checked, and Daniel would definitely qualify for California Medicaid (MediCal) and for California Children's Services, at least by what I saw on their respective websites. So he would qualify for full services anywhere in California.

But, as many people pointed out, there are fewer doctors and WAY fewer specialists in rural areas; it's better to live in or near a large city. We get great services for Emma because Southern CA is just one big city! :)

Melanie said...

Thanks everyone for your input. I greatly appreciate it!! Boy there is no easy pick now is there?

Anonymous said...

Hi there. I found your blog and looked through it a little. I also have a sweetie with special needs, and look forward to following your blog!
We live in NY and although I am just at the beginning of the journey, I do like what I have experienced so far in EI and specialists.
I heard some people say that if you have a child with special needs, you don't move out of New York, so I guess things are pretty good here.

Terri said...

I too live in NY and have had reasonable luck getting what my daughter needs. Not perfect, but good. Taxes are high, but we generally get what we pay for... Unemployment is a problem here right now too. Prices for housing in the state vary greatly... the house the person from Albany spoke about would cost around $140K in Rochester, way less in the Adirondaks (a lovely forrested area, but services are sparse there) and tons more $$ than Albany on Long Island (but there is ocean access on Long Island.)

I have friends in New England who are happy with the attitude of their communities and services... my friends from TX work much harder... Good luck!