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[Guest guest]

>1) As a parent (and think back to being a NEW

parent), what would you like to see in the Manual

about finding help for:

-finding/getting help from other parents

Parent to Parent is a wonderful organization that

provides parents with assistance in areas that only a

parent of a special needs child can know about. They

have coordinators who can match up parents with other

parents with similar struggles. These parents can

provide assistance with educational battles, insurance

battles, emotional support, and much more. They have

a national 800# (which I can look up when I exit my

mail) as well as regional chapters throughout the

country.

The CHARGE Syndrome Foundation also provides

directories of families both locally as well as a

complete worldwide directory to provide assistance on

CHARGE-specific topics.

Regarding the other services, look through your blue

pages page for page under " Human Services " paying

particular attention to the headings " Services for the

Disabled " . Your local Easter Seals, ARC, and Parent

to Parent Chapter can also steer you to your providers

of early intervention resources. Request any

pamphlets any organizations you speak with have.

Often they have pamphlets that can steer you towards

other services such as respite or legal aid.

Network with as many parents as you can. Go to

advocacy workshops to learn and network. Contact

Parent to Parent and go to their social functions.

You'll learn through your contacts the people and

agencies who are particularly helpful for their

families and who do not.

Reach out to as many parents and professionals as you

can. Press the professionals for as much information

as you can. Social workers are often overworked and

will often dedicate their limited time to the families

that they deem " most needy " so you really need to

effectively communicate exactly what your needs are

and keep on them for answers.

What things are/were most important/helpful to you?

The things most helpful have been FSS funds which in

some form are in every state. These funds can defray

respite costs and assistive technology costs. The FSS

case manager would have been instrumental in helping

us obtain emergency respite care when it was a life or

death situation. Unfortunately none of our social

workers steered us in this direction until after the

health crisis was over.

Other helpful things: The MA loophole (nationally

known as the Beckett Waiver) and the HIPP

program (the state of PA pays the premiums of MA

recipients when private healthcare is available

through the parent's employer at less cost than MA

(saving us much $$$).

Where did you hear about any of these things?

I learned about FSS only after we heard about early

intervention. We only heard about EI through our

Highmark case manager who happened to be a parent of a

child with Downs Syndrome. I only heard about HIPP

after 1 1/2yrs later after qualifying because of a

mistake in my daughter's MA required a supervisor to

repair and she steered us to HIPP.

2) Input on what needs to be in the Manual (and any

useful resources you know of) on Transitions:

- home to preschool (or early intervention)

- preschool to school

- one school to another

- school to adulthood

www.wrightslaw.com is probably the leading authority

on special ed rights advocacy. He is a phenomenal

attorney. Your deafblind agency would probably be a

better resource than your ARC advocacy office for

assistance because ARC will ONLY advocate for

inclusion and our kids are so complicated that they

often exceed the skills of ARC advocates or our

child's needs don't fit with their political agendas

of inclusion.

I would recommend the child have frequent

consultations with a child psychologist (every 3 mos.

the first 2 years then every 6 mos. for 2 yrs then

every year) to ensure that the family is taking

advantage of every service necessary and available for

the child's development.

Jeanne

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