How to Advocate for Your Child at School,



How to Advocate for Your Child at School,

in a Medical Home and in the Community

Handout OVERVIEW. Begin Craft project. Are you a Kinestetic or Visual Learner? Then, this project will be especially meaningful and fun for you. (describe 3 mini visuals)

I. Advocating for your child at SCHOOL:

A. Circles of Support

1) Typical Child’s Circle

2) A Child Who Has Special Needs

3) Building a Team – Parent as the Coach

4) Blank Circles of Support to build your own team. I added this just for you.

5) Specific Examples – Maintenance man, etc.

B. What is it like for Gary and Val to have Tom?

Sad, Tired, and Broke (Hear Ye, Hear Ye Scroll)

C. What’s the School Systems Impact on Family?

Welcome to the Team

Team Mate VS. The Enemy

Rest, Happiness, Safety, Hope

D. Parent Panel Presentations to the Community

1) We have presented about 3 times per year to

the UT School of Education’s ALD classes.

2) Wouldn’t you like to get apprentice teachers on the “team” for all children who have special needs?

3) How do you get to do a parent panel? Call a professor and offer a parent panel.

(Summer school too)

4) 3 to 4 parents who show a photo of their child

and tell their story 10 to 15 minutes each

5) How would you answer questions B & C?

I picked 3 aspects (physical, financial, emotional, add social) and used 5 sentences to describe each for question B. I picked 5 points describing the good things done by the school staff for question C. (Keep it positive)

II. Advocating for your child’s MEDICAL NEEDS:

A. How to find a “Medical Home” (show graphic & hand out page of notes)

1) Tell story about 1st pediatrician

“I don’t have time for your child’s special needs. I don’t get paid enough by the insurance company to cover the time it takes to read up on your child’s condition and to coordinate complicated care. I do earaches, flu, well baby care, that sort of stuff. Furthermore,

we were turned away without care for an earache from a minor emergency center because of Tom’s eczema and complicated case.

I had tried 3 mean dermatologists. Then I began a search for a kind, caring doctor. At 5 different specialists' offices, I quietly asked the receptionists and nurses "who would they use for their child." Who had a child friendly personality? He did not even have to be the smartest doctor, just someone who would not shame us for non-compliance. The same name kept coming up over and over. It was Dr. Fox.

I told him what the pediatrician had said. I asked him to refer us to a pediatrician who would coordinate care and read up on Tom’s condition. Dr. Fox said, I’ll take on coordinating Tom’s care. Complicated cases, it’s what I do!

1) Dr. Fox is the medical team lead for Tom’s 5 special doctors. He coordinates treatment plan of care.

2) He reads up on the latest research on tom’s condition.

3) He empowers his 2 nurses to find care for Tom when Dr. Fox is out of town

4) He works patiently with non-compliance by Tom

5) He holds the hope when I can’t (herpes I).

B. Tools to Coordinate Medical Care

1) Medical Notebook (see list of contents)

(book kept on top of fridge)

Current Medication Chart (from fridge door)

2) USB = Flash Stick of Memory

This one has 2 Gigabytes of memory ~$100 holds a file cabinet worth do data

512 mega bites about $50 (various sizes)

Download files from your computer and then upload the data at the doctor’s office

C. Teaming up with your Insurance Company

1) PPO’s vs HMO’s

We had more difficulties getting HMO to pay

For medical care.

2) Ask Insurance provider for a Case Manager

This is a valuable team member to have.

3) Two or more written, detailed appeals to

Insurance company describing the impact of

Getting the care or equipment for your child.

III. Advocating for All Children in the Community

By Promoting Solidarity

A. (M. Ed.) Medical Education Program through TXP2P

1) 2 hour Home Visit 2 parents teach

Family Practice or Pediatric Resident Physician

What a day in the life of their child is like while covering 16 topics: feeding bathing medicating, transportation, recreation, etc.

2) 1 hour Parent Interview (use photo notebook)

Time to tell whole story and discuss end of life issues or how best to deliver bad news, etc.

3) Grand Rounds Parent Panel 1 hour presentation

4) What topics are covered?

5) How we received out child’s diagnosis.

6) Grief Issues.

7) How Doctors can find resources for patients

8) Sign up on this sheet to volunteer for M. Ed.with TXP2P and Patty Geisinger

Will contact you. 512 458-8600

B. What’s another way to Advocate in the community for all children?

C. Parent Panel Presentations: UT School of Education, School of Nursing, School of Social Work, Statewide Conferences, Health Department,etc.

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