any other states... also, NY question | Autism PDD

Medicaid is really more for out-of-school help. Some help outside of school hours can be written into an IEP without Medicaid services, but sometimes having Medicaid services makes it easier because then the school has more funding. Still, a District cannot deny necessary services because a parent does not have Medicaid for her child.

Right - the waiver stuff is sort of secondary because, at their age, it's not like we're going to start doing a lot of DTs.  What they really could use is a lot of language therapy, and down here, we get 2X15 minutes, currently.  I supplement that with a private session, but as you can imagine, with two kids, everything is double the time, cost, and invconvenience.  I would get more language therapy for free in NY, if I'm understand everything.

As far as the small town - given that the language therapy and the consultant seem to be gauranteed by NY state law, I'm thinking that even in some rural hamlet, I'd get those services without too much trouble.  And I like rural NY - I'm a New Englander, and what I've seen of the upstate region I really like - feels like home, to me.

HOwever, NYS doesn't classify kids as autistic until at least Kindergarten  [/QUOTE]

I am confused by that....so they are just looked at by the school as needing extra services but not specifically labeled?

Yeah Fred, lots of great places around here.  And in the fall, Jess will get speech 3x30min/ week, OT 3x30min/week, and PT 1x/week (she doesn't get PT right now, but they thought she could use a little more help in the gross motor dept).  I can only imagine how fast the costs of extra therapy adds up for 2 kids....

Hi Fred.  I live in a little hamlet in NY called Johnsonville.  I have to say that so far we haven't had any problems at all obtaining services for our son who was diagnosed at 2 with pddnos.  It's a relatively small school district (Hoosic Valley School District) but special ed services here are known to be pretty good.  At our first IEP I was cautiosly optimistic going in as his EI therapists had told me about this district as being one of the better ones.  And I was pleasantly surprised to find that they were correct.  We actually came out of there with speech therapy when not even his EI speech therapist expected that we would get it because Zack is doing so well.  They figured they would keep it as there is a slight concern about his articulation and they kept it.  He was even approved for a pre-school summer program which we didn't really expect either.  They are going to review his progress at the end of the summer session to see what therapies he will be needing for the start of the actual school year. 

And the thing is, no one was even sure he would get services because he has made so much progress since his diagnosis at 2 and even the people who evaluated him for the school district said that it was going to be a hard sell.  Most of his issues are attention related.  His motor skills have resolved, no more stimming etc.  Speech is much better.  Communicates effectively and seems appropriately social at this time.  At his last Dev Ped eval. she said that as long as he continues to make the progress he's making that she fully anticipates his diagnosis is going to be pulled.  But, because he does have the diagnosis, the special ed director basically took all recommendations from the evaluation team and went with it.  Had he not had the diagnosis we probably wouldn't have been so lucky though. 

As far as the community I live in.  It's a small farming community (very rural) and is very nice.  It's about a 40 min drive to get to Albany and Schenectady and about 30 to Troy.  Those are the largest cities in this area.  I look out my front door and see deer, a coyote or two, foxes and many other woodland creatures on a daily basis.  I love it here.

Sorry that I have rambled on but I wanted to share what kind of experience we have had here so far.  I hope this has been helpful and if you have any questions please feel free to PM me.

have gauranteed levels of service for ASD kids - like NY state does with it's 1 hour/day of language therapy plus consultant, etc.?

For you NY people - what are some pleasant, rural, inexpensive towns or regions - places where people buy seasonal camps and summer cottages and such?

Fred,

I will second what WiMomof2 said about the waiting list/waiver having any bearing on services received through school.  In theory, they are 2 very separate situations. 

As I have mentioned before, Tony has been receiving CAP Medicaid since he was about 4 (he's now 12-1/2).  At that age, he also received full time placement in developmental pre-school, jointly operated by the public schools and county mental health department.  The beauty of that program was it was year round; on school breaks/holidays, mental health picked up the tab.  Once he was 5-ish, he was officially in kindergarten just like any other 5 yr old, except for the IEP and special ed class placements.

One of the biggest difficulties I have found with the CAP Medicaid is that there are not supposed to be any academic goals being addressed.  The reason being... those goals are supposed to be covered by school system dollars.  But for all practical purposes, the perfect time to work on homework is with the 1:1 worker after school.  So you have to get creative in writing the goals so that can be accomplished.  It does get tiresome keeping up with IEP goals, and trying to compliment them in the CAP goals.  Especially if you are working on a different window of time like we are with Tony.  His IEP runs 7/1-6/30; his CAP goals run on a true calendar year.

The biggest benefit we have received from the CAP Medicaid is the 1:1 worker.  We never pursued specific therapies (PT, OT, add'l speech); we simply created goals for the worker that addressed these areas of weakness.  Might Tony have benefited from the added intervention?  Probably.  But that is water under the bridge.  We worked mostly on more practical, daily living skills.  In NC, it definitely is person centered assistance.

Mary

Emerald - Stay on the List! Our slot did not come through until just before my son turned 6. DH and I are amazed at the changes we are seeing in the short time he's been doing VB/ABA.  Our speech-language pathologist is also thrilled.  We were originally going to go with a different provider.  When I went to the orientation, my son was one of the youngest kids (5 at the time).  There were a lot of 7 year-olds.  Remember, Mason already has skills on which they can build.

As far as schools are concerned, I've actually always been happy with our schools.  We're in Waukesha County and things in this part of the state are quite good.

Fred -- In NY, getting a Medicaid waiver for kids under 18 is difficult. Family income counts and they won't give a cutoff, but I can assure you that the NY cutoff is LOW.  I know no one on Long Island who makes a wage that can support them in their own home here and also has a Medicaid waiver. EXCEPT people whose child is severe (the criteria is that the child has to be in danger of being placed in residential care or hospitalized).  The waiver is granted based on parental income, number of siblings, severity of the disorder, chance that the child will have to be hospitalized or removed from the home in some way.  Of course, I also know a couple of people who made BIG donations to their NY legislators and got THEM to go to bat for them. Like anything else in life, there are exceptions to everything. But just understand that getting a Medicaid waiver in NY is very difficult. Over 90% of applications are denied the first round and most people I know who got it go Medicaid lawyers to work it for them.

There is a direct relationship here in NY between the wealth of a District, the proximity of that District to an urban center and the availability of good services.  One of your options would be to search around the Albany area, because CARD is up there and they offer lots of autism help.  And the upstate area is much less expensive than downstate.  The more rural the area, the fewer the services, as a rule.  The larger the school district the more the services, as a rule. In NY, school districts can be TINY since each and every little village is its separate school district.  One of the drawbacks to working upstate is that salaries up there are also lower.  If you can get a job in your field in New York City, you will get paid the most and can then live in one of the NYC suburbs, which are very expensive, but you might be able to afford if you got a NYC salary.  Since people commute to NYC by train, it's possible to have a LONG commute because you can sleep on the train or do work on the train. That way, you COULD work in NYC and live much further upstate, where it's cheaper. But the sacrifice would be you'd be spending lots of time on the train instead of with the girls.  Good luck.

BTW -- IMHO, your girls are doing so well that they will likely be in totally mainstreamed classes wherever you live.  I honestly would look at your local REGULAR education to see if its good. It might be worth staying in NC.  I know that a friend of mine moved to NC a couple of years ago. Her younger son is classified as learning disabled (no autism symptoms, but academic issues). If he had stayed here in New York, he would have struggled to get a HS diploma because he would have had to pass lots and lot of state academic tests that have been around for a hundred years.  They are not new NCLB tests, but actual state-wide "floor" tests that it's necessary to pass in order to pass a particular local course and also in order to get a NYS HS diploma. When he moved to NC, he found the HS courses so easy, he's actually going to graduate early!  No Regents exams to worry about.  

And I'm still pretty new to all of this, but I don't think it affects Mason's school therapies at all.

WiMom - no, not a scrabble player, just have a lot of words - I used to read the dictionary - no wonder my kids are autistic!

emerald, it could be worse.  Waiver list in NC is five years.  My girls'll be half way through elementery school before we get anything!

lol...I was just heading to bed!

Good night all!

Emerald - I hate to burst your bubble, but try at least a year and a half.  We were initially told about a year also, but that's completely inaccurate.  In fact, our case worker told us the wait has gotten longer than when we were on the list.  (no new slots being added) 

Fred - Services received through the waiver have absolutely no bearing on services received at school.  We are using the waiver for VB/ABA.  According to the waiver, a child can be approved for a minimum of 20 face-to-face hours to a maximum of 35 total hours per week.  Once a year your child is reassesed to determine level of care. 

Governor Doyle has proposed legislation that would require insurance companies in Wisconsin to cover autism related expenses.  So far nothing has been passed. 

I really love my state, but I would not recommend it over New York.  They are way ahead of the game. 

[QUOTE=fred]Yes, DW has relatives in Black Earth.  I visited once.  Thought it pleasantly bucolic :)  Any estimates on the waiver list (and does that make any difference for coverage for school therapies - as the girls are almost kindergarten age)?[/QUOTE]

BTW - Do you play scrabble Fred? 

And another note...and I'm sure this goes for most places, not just Wisconsin...really research schools...our school system is horrible here...they like to act like they are all about helping, write up these massive IEP's and what not, but getting them to actually follow through with even half of it is like pulling teeth.

WiMom--thanks for the heads up!  I sometimes wonder why I am even bothering...Mason is already 6 will be 7 by the time the waiver comes through...sometimes it just feels hopeless trying to get help for him!  I've read that Wisconsin is supposed to be one of the best places to get services, I have honestly not seen that at all...until we got the autism dx nobody wanted to help Mason at all!  And don't even get me started on insurance!

In my district.  No one has an aide in their classroom, and there are no autism specific classes.  Adam was the only child in his school with autism.  As far as SSI or Katy Beckett.  He doesn't qualify for either of those either.  However, I know that he won't be able to take care of himself as he gets older that is really becoming apparent.     

http://www.zwire.com/site/news.cfm?newsid=13825427&BRD=1 395&PAG=461&dept_id=216620&rfi=6

I would second the rural NY vote. I live east of Rochester and west of Syracuse. Living here in upstate is WAY cheaper than long island (~1/2). As stated there are differences in counties. When I first bought property out in “the sticks” I had a lot of friends question the quality of the schools. It turns out that the NT education is a little better and the SE is a lot better (in general each little town varies). It probably has to do with the rural counties being “poor” and getting more from the state.

I've said it before, between my wife (a registered nurse working 3 days a week) and myself (a research technician) we make K and we got the medicaid benefits card for my son. Making that money puts us in a 1,200 sq foot ranch on 5 acres which costs around 0K in my area. I get some weird reactions when I post info like this but honestly, I could care less what y'all think about what I make, if it helps someone, I'll post it. I am lucky to work at a company located outside the city of Rochester, so I live a little farther out and still have a 15 minute commute (we are 30 minutes from “the city”). IMO there's no way you can live in NYC or long island w/o spending a lot of time working and driving, it's just too expensive there, and nowadays most people making big money work for it.

We have always had 20-26 hours of ABA paid for by the county/school district (we have always had a choice between ABA or DIR). Monty has also always qualified for summer services. He is going into an inclusion kindergarten this fall and his new teachers who have seen him in action at his present preschool think he will do fine. We also get a few hundred bucks for fences, respite and any other ASD related expenses. My son is very verbal and that has never had a negative impact on getting services. His ASD classification over rides anything else, and no school official has ever tried to second guess that.

One other benefit of living around here is the university of rochester. It is a top notch research complex that also has a whole department for developmentally disabled kids. They did our diagnosis at 3 years after an 8 month wait (he was dignosed ASD, they don't use any of the other HF, clasic... descriptions). Since then they also had him in a GFCF diet study and he is still part of a study of how effective his ABA program is. This study gets him a full eval pretty frequently. It also gives us the "ear" of some very good dev ped's that specialize in ASD. The medicaid card now pays for his dev ped visits at this center

In reality I grew up a little closer to the city and I wanted to live in the sticks for my own selfish reasons. I bought land here long before having kids. Only now have I realized how good things are here – but  it’s always better to be lucky than good.

It gets way more rural if you go south of here (finger lakes region). Only problem there is it gets a little too rural, very poor and despite any laws if there are no therapists around you won't get services. We barely get what we do and all that comes from the city. Most of the camps are on lakes and that land is pricey, get away from the lakes and things go down hill quickly