What can Parents do/Funding?

[Guest guest]

HI Listers,

I am usually a lurker, but decided to chime in on this one. Sorry this is a

long one. I have " been there, done that " in regards to making tough

decisions to get what my children need in terms of appropriate educations

and services. Also, in response to from NC who just lost her husband,

plan for the future! make out your wills, tell anyone and everyone not to

leave a penny to your kids as it could jeopardize their qualifying for much

needed financial assistance down the road (medicaid,SSI, etc). I hope my

input can help, as I am grateful to many who have helped my family

throughout our " autism journey " . I have 3 boys, 2 dx. with autism. I

have filed for due process 3 times!! in 2 different states (2 in GA, 1 in

RI).

DUE PROCESS #1: The first due process for our middle son (age 4 at the

time - he's now 8) to secure ABA services in the public school (we requested

a CBA be hired, ALL staff who came in contact with my son were to be trained

and receive ONGOING training and oversight, ongoing parent training and a

minimum of 20 hours a week for my son of 1:1 DTT at school and 10 hours at

home), we used the GA advocacy agency attorney, who is FREE. It was a rough

road, as she had some preconceived ideas about ABA and was initially weary

of taking our case. But she was FREE, and I was willing to put in the time

to educate her, as we had no money, and an awesome case - data, objective

evals, video documentation, scientific researc, etc. But, now this is

KEY!!! Our son's data,data, data,independent evals, the documented

scientific reseach and video documentation of our sons progress in ABA won

her over. She is now a strong proponent of ABA. We had tried the districts

" eclectic,mulimodality,TEACCH class " and our son regressed, per their own

evals. but after 3 months during the summer of nothing but ABA, our son

made 1 years of gains in only 3 months of receiving ABA! We never made it to

court as the district settled out of court with us, ending up hiring a

Certified Behav. Analyst, providing oversight and training ALL staff who

worked with my son, even training backup staff - as I always say, " what if

his 1:1, God forbid, is hit by a bus today, who would teach my child??? " ,

and provided ongoing oversight, and we had all of this WRITTEN into the IEP.

and we ended up having a fairly nice working relationship (It was a long

road of the professionals taking our battle for our sons life as a personal

attack on them, which it wasn't. I could care less about their feelings,

about them " Liking " me, etc. My sons life is at stake. But as another

lister stated, I think they secretly admired my determination to educate

myself and fight for what was effective for my son. And also, they couldn't

argue with their own eval results - he regressed with their approach, and

made tremendous progress with a scientifically supported intervention) So,

please, check with your state advocacy agency and get in touch with their

attorney. your school district would have their number. Contact your sped

dept. and ask if they can provide you with the #. I am not sure if each

state has one, but it's worth looking into, just my opinion.

DUE PROCESS #2: Our youngest son, at 15 months began showing signs of

autism (Just FYI -he is now 4 yrs old, in a regular preschool class with no

supports - graduated this past Christmas from a private ABA school - is

testing in most areas as age approrpiate - ABA/VB works!!). This time we

knew what to look for and jumped on him like flies to cow dung! we began ABA

with him, (we were still in GA), after a few months of great progress,

enrolled him in EI and requested ABA from them. Of course they had NO CLUE

as to what applied behav analysis was and they refused our request. We

filed for Due Process using the same GA advocacy attorney (FREE), and they

settled with us before going to hearing - hired MY staff as early

interventionists to do his ABA (so that helped tremendously with our debt)

as no one in this EI knew what ABA was, let alone had trained staff to work

with my son. Again, data and objective evals from autism professionals - we

used Nemours childrens clinic in Jax, Fla. and the Marcus Center in Atlanta,

GA to do the evals which all demonstrated phenomenal progress and the only

intervention being provided was ABA). When he turned 3, the district was

using the Behav analyst hired for my older son, so that worked out nice, she

worked with my younger son also, and we had a great IEP written up).

DUE PROCESS #3: We have since moved to RI due to my husbands Naval

military commitment. We came here with AWESOME IEP's, every section for both

children basically identified ABA/DTT as their learning style and written

into EVERY goal,also documented the need for ONGOING TRAINING AND OVERSIGHT

BY A CBA of both my children's education, etc. I had no battle for my 3

year old. the new state agreed to place him in a private ABA school in the

district, as they do not provide ABA/DTT, refused to provide it, and so we

requested placement into a private ABA school since they refused to provide

in in the public school. For my 7 year old (now 8) it was clear from his GA

IEP that he required ABA/DTT to address his learning style. They were aware

of our sons year spent in an " eclectic/teacch " class and his severe

regression with that intervention, yet they proposed the exact

" eclectic/teacch " classroom for him. they refused to consider ABA/DTT,

would not even discuss it. Had decided his placement even before we met at

the IEP. Needless to say, we filed for DP. the advocacy agency here would

not assist us, as their mission is for augmented communication

assistence/inclusion issues, and I understood that since I was fighting for

a more " restrictive " environment, so we had to hire an attorney. Long story

short (ha), we won our case based on Procedural violations, it wasn't even

an aba/teacch case - they just outright violated my sons right to FAPE by

not including us/parents as equal team members, not considering our input,

etc. The distrtict has appealed our case so the saga continues. Our

attorney wasn't cheap as we had to pay a few retainers, but it was worth it!

The district is responsible for his bill now. but that's under appeal as

well. We went to this attorney for an intial review, to see if we had a

case that could win. That really helped.

I guess to sum it up. No it's not an easy battle, especially like us

and many parents, we don't have the funds to fight. but we had a great

case - the data made the case. Keep good DATA, get good independent evals,

and document with video your child's progress. Check with your state for

advocacy agency attorney. Find a good attorney through other parents. Some

attoneys, from my conversations with other parents, will " work something

out " with you in regards to payment of fees. From our experience, it was

helpful just to have that intial meeting to see if we could win our fight

for services in the new state, which I knew we would. Pay that initial fee

just to have an attorney review your records, data, etc. Believe me, they

won't want to waste theirs, or your time if you don't have a case.

Keep up the good fight. It's long, brutal and cruel, but because of our

fight, one of our sons is in a regular class, learining incidentally, can

have a conversation with you, and our older son- he isn't institutionalized

and probably would be right now if we hadn't learned about ABA 5 years ago,

he's reading, doing simple arithmatic, can dress himself, brush his teeth,

tie his shoes!! and that's worth every minute passed, every penny spent,

every dollar borrowed and tear every shed. God Bless You. Thanks for

letting me share.

Eve in RI, also an RN, BSN, but hasn't worked since Autism entered our

lives.