FSS funds and other services

[Guest guest]

I'm sorry to hear you were given wrong info, that unfortunately often

happens.

In the state of PA, FSS funds (family support services) go to families with

a child (living in the home) with a dx of MR (IQ under 70). FOR CHILDREN

UNDER THE AGE OF 5, children qualify with a dx that is associated with MR

(the child is considered likely to be MR or at risk for MR). Down's

Syndrome is listed as one of the examples to automatically qualify for funds

for a baby/preschooler. Therefore, when Caitlyn tested cognitively over 70

(yay!) I used her dx of CHARGE to keep her FSS funds. I provided medical

records attesting to her dx and information on what the letters stand for.

Many other states give FSS funds to any kid with a disability not just MR so

everyone needs to check.

, regarding services here in PA. You have an ACCESS card, are you

getting HIPP? HIPP is the Health Insurance Payment Program and falls under

the Dept of Welfare (Medical Assistance) HIPP pays families the premiums of

their private insurance for the employer and the disabled child when it is

cheaper than the MA HMO. You still keep MA for whatever copays,

deductibles, etc not covered by your private insurance. To be eligible, the

child must be eligible for coverage under private insurance through the

parent's employer. Call 1-. Colleen and --you both

are in PA and should look into this too.

, have you heard about wraparound services? If your child has a dx of

MR or MH they qualify for intensive in home services. A TSS (therapeutic

staff support) person comes into the home. Someone with a degree in either

education or social work. The TSS teaches the child to behave more

independently and appropriately at home and in the community. The TSS works

under a behaviorist who designs a treatment plan for the child. You must

have an ACCESS card to qualify. Caitlyn qualified because she has so many

autistic traits that she was dx with PDD/NOS. It was debated on the list

earlier if it should in fact be called PDD or autism, but until CHARGE has

it's own MH diagnosis, I'll take PDD because it gets her the services she

needs. She has made dramatic improvements with her TSS.

Here in PA, a child with an ACCESS card automatically qualifies for WIC

which provides formulas or milk and other things to supplement your child's

diet. It's only up to age 5, but there may be other nutritional programs

that pick up after age 5, that I'm unaware of because she's not 5 yet.

Have you heard of PIAT. Pennsylvania Initiative on Assistive Technology.

They help families get in touch with organizations that provide funding for

assistive technology. There are too many orgs to list here but some of them

are Miracle Ear and Hear Now for hearing aids, the Otto Sussman Trust for

misc expenses for the chronically ill, Telecommunication Device Distributor

Program provides TDD phone devices, Vehicle Modification program etc.

PIAT's phone number is 800-204-PIAT (7428). It's located in Philly through

Temple Univ. Many of their programs are national so those outside PA may

want to give them a call too.

Theres also Title XIX or the Medicaid Waiver program which gives funds to

families who's child may " otherwise be institutionalized " (you'd have to at

least say so) but is remaining in the home. There is a long waiting list

for funds but they can be used for therapies, transportation to therapies,

respite, etc.

The last program I know of is ABC funds. Your child has to have a MH dx to

get these funds which can only be used for respite care. Funds are about

$150 each quarter.

Any questions, feel free to ask.

Jeanne McMullen mom to Caitlyn age 4 cHaRgEr