What services do you get? | Autism PDD

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Yea, we live in Florida and it is dismal. Be prepared to fight. We are doing fairly well. I just had a pre-IEP meeting this afternoon...it was so disappointing. Payne is dx PDD-NOS and I really (this is going to sound bad) need him dx autistic for me to get him what he needs. We are going to see a ped. neuropsychologist over spring break. Hopefully, she will help him fit into that category....fudge the lines a little. He is a lot of the things, but he isn't too. It is so frustrating. He couldn't get speech b/c he couldn't articulate - ?? - because he was tongue-tied - literally. we had surgery to correct. Thanks for the information on Florida.  That is what I keep hearing is that it is not that great there.  Which is too bad.  Both my wife and I are from Florida.  Honestly I don't care where we go as long as my son gets what he needs.  Northern California is where we have been looking, but I am willing to go anywhere.  My son is only going to be 2 in a couple of months so we haven't had to deal with the school district yet.  But we have heard all of the horror stories about our local one here in Utah.NY is pretty good especially under age 5 but is very expensive to liveHow old is your child.  Before the age of 3, services vary greatly.  In theory, then the service should be similar no matter where you live since they're based on your child's individual needs, but services depend on money and the amount of money available depends on the taxes and population density.  Therefore, the best services tend to be in larger school districts, in richer areas in densely populated states.  Still, all states HAVE to follow federal law, IDEA 2004.

I currently live in Utah and the services here seem to be lacking compared to what some others are getting in other states.  Here is what I am getting for my son here in Utah.

1-  2 visits per month from an occupational therapist.

That is it!!!

I am paying for a physical therapist, and an ABA consultant so I can try and do therapy with him at home.

My wife and I are thinking of relocating.  Just wondering what other states are doing to help you.

thanks for any help you can give me.

You  sound like my husband and me! We would relocate anywhere where we could get more help for COnnor-he is 3, autisitc and nonverbal and has some sensory issues. Do you get part C? It is a federal program that you have to getif your child is a certain percentage behind in certain areas, like speech, oral motor,etc... FLorida is not great,I can tell you that!! Good luck! I'm in florida too...
he had qualified for ESE (Exceptional Student Education) at first (age 4) through Child Find... we were put on a wait list to meet with a doctor from U of F. He was placed in a pre-K setting, 5 days a week from 8 to 2 (6 hours a day), right away he recieved ST 2x a week (1 hour/week)
We are lucky to be in a great school district... public school has been rated A for years.
(btw- the wait list lasts for 9 to 12 months... it's a horribly long wait)

After his dx with ASD from U of F, we further qualified for OT-2x a week (1 hour/week) and music therapy-1x a week (30 minutes/week).
(Seems like in FL... if you don't have that ASD 'label', it's hard to get anything)

Do I wish it was more? Yes.
No question he needs more help than this.
He loves going to school. I just wish he had more 1 on 1 time... more OT... more ST... I do believe he would benefit from some type of ABA type of therapy- but's it's not an option.

We also pay for him attend ST after school at a therapy center.
We are worried about next fall at the moment... seems like you need to have a back-up plan and another back-up plan, just in case... I wish you well in your search.


mikki39169.7543055556

After reading over everyones posts I feel soooo guilty for complaining about our Graces therapy/treatment. Grace goes to a Special Needs/Speech Therapy Pre-school 3xs a week. On Tuesday & Wednesday from 8:00a.m. - 11:00a.m and on Thursday Grace goes from 8:30 - 10:30. They do not provide transportation - it's 40 minutes 1 way! Grace gets FULL MEDICAID and will get MEDICARE in 2 years, she also gets SSI (thank god)!!!

The School breaks for summer and I'm already VOCAL on this issue.

This is not enough, but reading this post I know Grace isnt the only one NOT GETTING ENOUGH

I really regret our decision to move to Texas. We get nothing here for the boys. Just the school program and in that they only get group Speech and OT once a week for 30 minutes.

Of course after retirement we really couldn't afford to stay in Arizona. But we had great resources in Arizona. We could have had ABA, speech, ot, AIT, etc. And it was all covered under Arizona Long Term Care. Unlike SSI ALTCS wasn't an income/asset type thing, it looked at the child's needs and their resources. We didn't qualify the first time we applied, but our therapist came to our home and helped me with the interview and I was able to to get it the second time around. It was a great a program. Really picked up where our Tricare didn't. I have been unable to find anything like it in Texas.

Hi,

My 20 mos old was recenetly ( a week ago) diagnosed with autism/pdd (the neuro said ODD and the ped says autsim).. whatever it is, my life right now has turned upseide down to a point where getting out of bed the last seven days has been a herculean task - i so want out of this.

Sorry for rambling.. I live in NJ ( middlesex county)  Are there schools in north jersey for after 3 yrs? is this a special day school? Do u mind me asking how expensive these are? I have heard that a good school can cost anywhere from -50k a year - is that true?

thanks a lot,

Rita

NY here ...

Beginning in September, when Nick transitions from a preschool student to a school age child, he will be in an 8:1:1 TEACCH program, will will have speech 5x per week, OT 2x per week, possibly PT (being evaluated), and will have a full time aide.  I'm pretty happy about the services he will be getting.

Now, he is in a Head Start class.  Speech 5x a week, OT 2x a week, SEIT services 4x a week.

 

We live in NC too... my son is 12 and in middle school.  He is now in a separate "cross cat" class (various diagnoses) with 15 kids total (1 teacher, 1 aide).  Speech was just reinstated in his IEP... 1xweek @ 30 min., 1xevery other week @ 15 min. 

Like concernedpa, I am really NOT thrilled with what little the school offers.  In fact, I am convinced Tony needs to "repeat" 6th grade as he has made no academic progress this year.  I just heard yesterday from another parent the teacher even admits that none of her students are getting what they need.

We are looking to move by summer.

Mary

Under 3 years old in Texas we have ECI/sliding scale..Sarah was nonverbal, toe walked and only drank milk at 2.8yrs...she only qualified for 30 min. a week of speech from a girl that had no clue on how to engage her and she got 30 min. of play therapy from her case worker..no progress whatsoever with ECI.  We did private speech 2 hours a week and 30 hours private pay ABA with huge progress.  I know some kids get more here but they have to be extremely severe to get anything! Pretty sad! Once she qualified for school it was even worse at 3 years old...they wanted to give her 15 min of  group speech a week~ we declined and did therapy at home for 3 years before she started kindergarten.  She never would of been able to be mainstreamed without the intense therapy we had to do on our own.  Whatever services your child is getting make sure they are progressing or it is really a waste of time. ShelleyR39169.276875I live in Northern New Jersey.  Getting EI started was the most difficult for us, had to fight a lot for OT and ABA.  However, once we got diagnosed and turned 3, our public school system has a great Autism program: he gets an one on one aide for the whole day who is trained in ABA, OT, and Speech.  

Live in NC.  Son is kindergarten age.  School system will provide Speech 2x 30min/week

OT once 30mins/week.  Autistic classroom.  Not too thrilled with their program.  I prefer ABA.  Have private arrangement.  Good luck with your move.

Concernedpa.

I live in Virginia Beach, VA. My DD attends an Early Childhood Preschool classroom at the public school for our area. It is a year round school which I love! As far as services, she receives Occupational, Speech, and Physical Therapy 2x weekly. They also have times during classtime where the therapists work with the class as a whole. I guess I should count myself lucky. As far as I know the district does not cover ABA, but thankfully our insurance will!

Hi Chris I've been a lurker for awhile but really wanted to post a reply to you.

I live in North Carolina and I have a son (Peyton) that just turned 3 last week and he was dx with Autism last December. So far I have been quite satisfied with everything we have received. I'm not sure how old your son is so I will post a few different things that I have found to be available where I live.

 

The NCEIS (North Carolina Early Intervention Services) offers services under two categories:

[QUOTE]

What Is the Infant-Toddler Program?

The Infant-Toddler Program is a variety of agencies working together to provide early intervention services for children ages birth to three who have special needs and their families. Early intervention services help young children grow and develop and support their families in caring for them.

Early intervention is a term that often is used to describe specific agencies, programs, services, and resources. In North Carolina, early intervention refers to the system of services provided by many different agencies and programs for children birth to five and their families. This comprehensive, interagency system is called Together We Grow. There are two parts of Together We Grow – the Infant-Toddler Program for children birth to three and the Preschool Program for children ages three to five.[/QUOTE]

 

[QUOTE]

Preschool Program (Part B - ages 3 to 5)

The program includes all 3- and 4- year-old children who have disabilities. Five-year-olds with disabilities who aren't old enough for kindergarten are also included. The needs of these children (because of permanent or temporary disability in the areas of cognitive, communicative, social/ emotional and/or adaptive disabilities) are unable to be met in a natural environment without special education and related services. This group includes preschool children who are delayed or whose development is atypical and those who have autism, hearing loss, health impairments, orthopedic impairments, speech-language impairments, visual impairments, or traumatic brain-injury. Preschool children with disabilities who meet these eligibility criteria may receive services upon reaching their third birthday.

Services Provided:

I never delt directly with the NCEIS, but rather we were referred to the CDSA(Children's Developmental Services Agency) (I know that the services he could receive were based on income but he has medicaid and the amount we had to make yearly for a household (and because peyton had developmental delay he counted twice toward the family size..not sure why) was CRAZY we could never make that much even if I worked full time as well.  by our Peditrician because we were concerned about our son's speech. He had tubes put in his ears and after an evaluation by the CDSA (really nice ppl) here in our home they said that he was eligible for Speech Therapy & Play Therapy in our home 1 x week for 1 hour per session. This was all before Autism was ever mentioned/dx. Within a month we had our play therapist in place  however beacuse of our situation (transportation) we had to also have a speech therapist that could come to our home, we never got this before Peyton transistioned into the Pre-School section of the program.

 

Peyton also receives SSI. I applied at the end of January and we were approved last week. I think that it really helped that we were already involved with the CDSA-things seemed to move swiftly. I did the entire application process over the phone and via fax.

 

Peyton turned three last week and transitioned from falling under the CDSA (Infant Toddler) portion and into the pre-school program. It only took a couple of weeks and three visits to the school (once for a tour I requested). I am very happy with the facility itself. It is a public developmental school and they provide the bus transportation to and from. He attends on the same yearly schedule as all other public school students in our county, except his class hours are from 8:30-11:00. In addition to the classroom activities he receives Speech Therapy, Occupational Therapy once a week and a variety of things we had incorporated into his IEP, such as potty training. They do awesome things there, they even have a theraputic riding program with horses.

I forgot to mention... We have paid for nothing... which has been a blessing.

I really hope this helps and I haven't just rambled on a bored you to tears.

Raine

 

Autie Mommy39168.5982291667

I really think it depends on the county and area. We are in Florida and I have had great luck. We come from Washington DC which was horrible. The early intervention was great but it took them so long to get anything in place, but the school system was horrendous. They cut everything except one hour of speech a week and they weren't getting that. The school psych told they were not autistic. Here the school has given me 90 min of speech a week and they are evaluating for OT and I think PT soon. They told me they had autistic tendencies and didn't shy away from it at all. They are working closely with the psych, I don't care  for him but he is somehow related to the school so they listen to what he says. So if he says they need it they will get it and if anything he has them being much worse than they really are. There are definitely things I'd like to improve but so far I haven't had to fight for anything. I think it really depends on where you go and the school you get.

Oh I wanted to add the change in them since we moved is absolutely incredible. There is some progress almost everyday. It is very exciting.

Linda1156739168.6457407407

Thank you for all of your replies.  Sorry I wasn't able to get back here as soon as I would have liked.  I appreciate all of your information.

 

 

Please go to butterflyeffects.com!!! Far superior to any other!

No one seems to be getting what their child needs?!?!?
Isn't this pitiful?

I can tell you our experience:
Moved from NY to northern NJ when he was one. (He was diagnosed with ASD at 22 months)  Early intervention, which is excellent in NJ, provided 20 hours a week of ABA, speech for 1 hr 3x a week and OT for 1 hr 2x.wk.  HE WASN'T EVEN DIAGNOSED and they provided this! 
Unfortunately, NJ is expensive and we moved to Colorado right before his 3rd bday.  Guess what they offered us-2 hours a week of speech---that's it!
Luckily he turned three, we moved to the only decent district (with respect to preschool and autism) in the state, and got full day preschool M-TH. It was an autism class.  He did well there but now just thrown into a regular elementary school for kindergarten and looking at moving again.
Unfortunately, it seems that no one has decent services, so why bother?  We want him in a school designed for kids on the spectrum and ABA/VB. 
Anyone out there get that for there elementary aged kids?
Cecelia

I am new this board and I'll start with this thread. My 4 year old son was dx at age 2 1/2 with HFA. He stopped talking at the age of about 14 months and we talked with his pediatrician and had him signed him up for private ST three times a week when turned 15 months. My wife and I immediatley starting going to every seminar on autism that we could to learn about what we could do and services that were available to him. We got him signed up with Babynet and the coordinator came to the home twice a week for therapy as well, and they helped us with the legalities of services. When he reached the age of three the school district took over services. I can't say enough about the school district that we live in, but also I can't stress the importance of finding out what legal rights your children have. We read about and attended the seminar of Peter Wright a MUST if you get the chance, and it only cost 10 dollars for parents.  We have not had any trouble in getting the services needed for our son.

Now my son goes to 4k from 7:45 to 10:30 five days a week and recieves an hour of one on one of ST and OT each week at school. We still have him enrolled in private ST and OT 1 hour each every week. We had it implemented into his IEP when he was in K3 to have 30 hours a week of ABA therapy. We just had his IEP yesterday and it is going to continue for the next year as well. He has had 30 hours of ABA for the last 10 months. I forgot to mention that we have not paid a dime for any service since day one, with the exception of my wife quitting her career to be there for our little boy. Our son went from not saying a word to reading any book put before him (unbeliveable!) and can count to 100 or more and we are starting simple addition and subtraction. Conversation is getting better by the day especially in comprehension, and receptive is as well.  It has been a very restrictive lifestyle for my wife and I, but we made it fun to be together in this journey that has been set before us. My wife always quotes Eleanor Roosevelt " We must do the things that we think we can not do."

 

 

Hello, I live in British Columbia, Canada.  We have 2 different levels of autism funding:

Under Age 6 - the provincial government provides your family ,000 per year to spend on the different services that you think would benefit your child best.  You are in charge of how you would like to spend the money as long as it follows your child's behavioural plan.  You receive the money every birthday month, but you can't roll over any unused amounts to next year.

Over Age 6 to Age 18- your funding drops to ,000 per year as your child is now in school.  The school district provides your child with speech, OT, and some play therapy.  We also receive Education Assistants for the classroom.  The ,000 is yours to decide how you want to top up the services provided by the school.

Over Age 18 - if you qualify you may receive a disability pension for approx ,000 per month if you are unable to work full time.

I know every province is different and ours is not the best, but by what I have read I am very grateful to be living here.

 

 

Well my son is in school and this is what he is getting 40 minutes a week of group speech.  He has a slight language delay so I can live with group speech cuz then he works on social skills also but I feel he needs more time in speech.  As for Occupational Therapy he gets 30 minutes a MONTH that is it.  He does have a Behavior plan but no behavior therapy like ABA or anything like that the school system says he is "above" ABA.  So I don't know.  I have a mental health guy coming in Monday to see what he thinks about starting a home program. 

I would like to see another hour of speech a week and an our of Occupational Therapy a week, some type of behavior therapy, and possibly a tutor.  I really want this in the summer months because there are 6 weeks where he will have no speech or OT whatsoever. 

 

Becky

My first caveat: I MOVED to a better school district, and a smaller house
for my son's education.
He gets, per week (were in CA):
1 hr 30 min 1:1 OT (1 hr in gym, 30 min in class-for fine motor
1 hr group speech (for pragmatics only-his speech is good)
30 min Social Skills
1 hr adaptive PE (30 min, 2x a week)
1 hr small group OT (sensory class)

5 days a week, 9-12. he gets extended care 3 days a week , so I can
continue to go to school (thank god!)
Includes: transportation and lunch

I think that's pretty good from what I hear. I am actually happy with the
program-- We have a couple of private services as well (OT, social
groups) But, I am very concerned about his transistion next year into
Kindergarten......luckily I have a whole year to learn what to expect and
do.I am in Northern New Jersey, my son is 3.5 and goes to preschool with typical children in his classroom, he has his own aide, goes from 9am-2pm (at my request, preschool here is half day) so he attends am and pm sessions, gets ABA, speech and OT, will also be starting in home ABA 6 hours per week and I will be requesting Music therapy at his IEP meeting in June.  I have to say my district has been wonderful to my son.  We would love to move to Flordia but everything I look into does not look good there.  He has a big smile every morning when he arrives at school and is learning so much, nothing can beat that!! So, for now we will stay here.

I am told that CA is better than AZ but I have gotten A LOT of services for my son who was diagnosed right before 4. 3 and under he would have gotten MORE services. Currently James gets from the state

30 hrs/wk HAB (aba or ?) or RESPITE (daycare)

2 hrs/wk Speech

2 hrs/wk OT

2 hrs/wk MUSIC

1 hr/wk PT

I was told by my case worker that people are moving to Maricopa County (where the therapists are) AZ in droves with kids who need services. I was also told by a few of my therapists when I questioned their out of state cell numbers, that it is widely known AZ authorizes a lot of hours so there is work here for the graduates. It has gotten more expensive to live though in the last 5 years here. FYI, Gilbert School District is pretty much the best for SPECIAL ED in Maricopa County. Johanna  

School therapies are to help with school. Private therapies address daily life skills. We fight until our son get's what he needs. Texas area. Linguia sytems has great computer software for asd kids. I would get this and use them at home. The more at home you do the better. Sandbox learning deals with social skills.

First of all - I am in Vermont. I like the Vermont State system for Autism. I like the school, as well.

Second- someone said NY is expensive to live. And while the Northeast is generally one of the more expensive parts of the country- the WHOLE entire state is NOT the same.

Some parts of NY are EXTREMELY expensive- and other parts are less expensive than even where I am in Vermont. NY is a big state!!

Upstate NY is generally less expensive with very good schools... I believe NYMOMMY3 is in a good area of upstate NY. 

You gotta look in the nooks and crannies- good schools are out there!

Thanks.

Gail    


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