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[IPp] Fwd: Re: I need help for my daughter

Dear Beverly,

Here is the letter (at bottom).  This woman is incredible and can put you
in touch with people from your state to make life easier on you where the
school is involved.  Write to her, tell her what's going on.  Together
let's make some changes that make a difference for our children and
others like them.


>From: email @ redacted >To: email @ redacted >Subject: Re: I need
help for my daughter >Date: Sat, 3 Aug 2002 11:16:04 EDT > >Oh poor you
Cynthia and all our abbreviations! All of us work in the >disability
field (mainly mental retardation) but diabetes can come under the >same
laws and rights. So you are dealing with a new field that has soooooo
>many acronyms! I can easily help you with that. > >You have TWO ADA's to
deal with because the issue is diabetes. You have the >American Diabetes
Association. When Judy talks with you, I'm sure she is >talking about the
Americans with Disabilities Act -- our ADA! It is a very, >very strong
Civil Rights law enacted by the first President Bush in 1990. It >adds
great strength to IDEA (the special education law) and 504 >, especially
for adults who don't have special education laws. > > >The NJDD is the
New Jersey Governor's Council on Developmental Dissabilities. > Website:
New Jersey Developmental Disabilities Council> >And th P&A in New Jersey
is the Protection & Advocacy group. >Website: NJ Protection and Advocacy>
>To give you a bit of background, our field has another big law that was
>passed by Congress in the early 1970's and revised to keep up with the
times. > It is called the Developmental Disabilities Act. The DD Act is
>administrated by a federal agency called the Administration on
Developmental >Disabilities, which sits in the Administration for
Children and Families in >the Department of Health and Human Services.
The DD Act funds: >DD Councils in every state: These are policy offices,
usually attached to >the state's Governor's office. They write reports
(your state has put out >some good things on moving people out of state
institutions). >Protection & Advocacy: The P&A are the agencies, funded
by the DD Act in >each state, that were developed to protect the rights
of people with >disabilities. They are lawyers like Judith Gran. I'd call
them first. >University Centers for Excellence in Developmental
Disabilities. The DD Act >also funds the Centers; they used to be called
University Affiliated >Programs. They are attached to a University and
provide services and >training in each state. Yours is >The Elizabeth M.
Boggs Center on Developmental Disabilities >University of Medicine &
Dentistry of New Jersey >Robert Wood Johnson Medical School >335 George
Street >P.O. Box 2688 >New Brunswick, NJ 08903-2688 >Main Phone:
732-235-9300 >The Director of the Center is Debbie Spitalnik who is a
great friend of mine. > They may also be helpful. > >You can't be more
cynical about lousy schools than I am. I do a lot of >consulting in them
and am CONSTANTLY hitting my head against mostly stupid >Principals. I
have a piece of big advice for you --- Don't CALL the >Superintendent.
Start WRITING everything you want and all your conversations >and mail it
to them in a letter and keep the copy. At the bottom of the >copy, CC
your lawyer. They will know immediately that you are serious and >that
you are building a "log" for court. Even if it never gets that far, >what
you write and the timing of when they respond to you are big deals. I
>have seen schools lose battles simply because they do not reply to the
parent >in a reasonable amount of time. So PLEASE put everything in
writing now. > >And no, you do not want to wait until the first day of
school. You want >things PLANNED in advance for her health care! > >I
have one other big connection in New Jersey whom I know would go to bat
for >you big. Her name is Kathy Selvaggi (she may also be going as Kathy
Selvaggi >Fadden because she married). She is with the Matheny School and
Hospital (in >Morristown I believe). Website: Matheny School and Hospital
I worked >with Kathy (we used to call Cerreto & Selvaggi the "mental
retardation >mafia"!!!). I have seen her take a kid from the hospital to
school every day >and back because he didn't need to be in the hospital
during the day and >should have been in school!. Her specialty is indeed
Developmental >Disabilities, but she sure knows about stupid schools and
is a GREAT >advocate. She is a real dear and you would love her. She
doesn't care about >getting into battles with school systems! If you
contact her, tell her I >sent my love and still miss her dearly! > >So
what you are doing now is building your support team. Judith is
>nationally known in the field of disabilities. I'm nationally known in
the >field. Your P&A and DDC have clout. Kathy is a DD physician. > >A
good website with all sorts of tricks of the trade on dealing with school
>is WrightsLaw. Website: Wrightslaw - A to Z Topics Page> >And a big YES
to your question about having other parents with the same >concerns
contact me for help. If we have a large enough group with the same >set
of problems, we will organize a small group to go visit the Special
>Education Commissioner in Washington, DC and make it clear that this
cannot >continue. In fact, once we have Jessica settled correctly and
appropriately >in her school, perhaps you and I should develop a
questionnaire for the ADA >(American Diabetes Society) and the JDF
(Juvenile Diabetes Foundation) to >send out to parents to assess how much
of a problem we have. We'll take >"Jessica's Fight" all the way up the
ladder and make life better for plenty >of others as well! > >I chose a
career to fight for families as I am for you. I get so thrilled >when you
write back and say you are grateful!!! I get even more thrilled >when I
see we are making a real advocate out of you and building your team! >But
I will be satisfied only when Jessica is treated appropriately in her
>school!!!! So I am also thankful to be a part of your team! Mary > >Dr.
Mary C. Cerreto >Associate Professor of Family Medicine >Dowling 5 South
>Boston University Medical Center >One Boston Medical Center Place
>Boston, MA 02118


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