$$ for labels

[Guest guest]

Cheryl

In the state of PA, a tremendous amount of services

(called wraparound) are doled out to kiddos who meet

the criteria of an MH or MR label. Caitlyn does not

qualify under MR, but her PDD characteristics

qualified her under MH. It meant getting a PDD label,

but we get full time aides coming into the house to

teach her appropriate behaviors and skills at home and

in the community. They work on dressing and

self-feeding skills, communication, social skills and

so forth. Their presence provides me with much needed

respite.

We also get funds for the MH or MR label called FSS

funds (or family support services)--currently about

$600 a year to be used towards community activities

and other things, such as a pool pass, gym class,

dance class, developmentally appropriate toys, museum

admission, etc. We use the money up fast but it's

better than nothing.

There are thousands of $$$ available specifically to

those who meet the criteria of severely MR to help pay

for treatments not covered by insurance such as

hippotherapy, vision therapy, respite (even extended

care) etc. There is a long waiting list for it but

for those families who benefit, it makes an incredible

difference. These $$$ are to support families to keep

their child in the home instead of institutionalizing

the child which would be far more expensive.

BUT! I want to point out that to receive these

services in Pennsylvania you have to go through the

county --not the school district. 1. You have to

meet the criteria for the county for your child to be

considered MR or MH and 2. You have the right to

keep your records confidential from the school

district so that they won't hear of the label.

So what this means: 1. Just because the school would

label my child MR (and they still just might because

of her very poor adaptive behavior) doesn't mean I'd

get the services because the state's criteria is far

stricter than the school's criteria. AND 2. I can

access the services from the county without the school

giving her a label, which I have in fact done.

Every state has different services and different laws.

You have to network very thoroughly to learn about

all of them in your state. You are wise to be

reluctant to have your child given a label that will

stay with him for years to come.

Jeanne

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