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The Art of Advocacy

Learning how to advocate for your child with special needs

August 01, 2011
A first step for parents is accepting that their child is having difficulty adjusting socially and educationally at school. According to Noha F. Minshawi, clinical director, Riley Hospital for Children Christian Sarkine Autism Treatment Center at Indiana University Health, a child with Special Needs who is not relating well to the teacher or classmates can become frustrated resulting in the child's behavior growing aggressive and irritable. Such a situation can lead to tantrums and even self injury. It is important that parents recognize these signs and take action with advocacy to address the situation properly. Parents who accept that they need to help their child into a better learning environment where the child can flourish are far better off than leaving a child struggling in a situation that is stressful for child, parent and teacher.

Angels Among Advocates

"It was like an angel appeared and cleared away a fog of confusion." That's how parent, Kim Garvey, described advocate, Jane Grimes, founder & president of the Hamilton County Autism Support Group of Noblesville, Ind. Grimes became Garvey's sound voice of reason as she made great strides for her daughter while accompanying Garvey during case conferences with school officials to formulate and modify Garvey's daughter's Individual Education Plan, (IEP). A child's IEP is a legally binding document between the school and family that states that the school recognizes a child's special needs per a doctor's diagnosis and will uphold teaching methods unique to that child's needs.

Creating Learning Environments

Formulating an IEP document requires patience and understanding from everyone involved as parents meet with school board members to discuss implementing teaching methods, techniques and a curriculum that all create a positive, productive and beneficial learning environment that enables the child to excel and succeed regardless of disability.

Garvey expressed that IEP meetings are much like a court trial. An advocate steps in and represents the family before a panel of school officials much like an attorney representing someone in court. She offered that parents need to be prepared to ask questions, take notes, present topics for discussion and make suggestions as to what works best when teaching and relating to their child. "This can be an emotional time for parents," Garvey added. She described Grimes as just the person she needed to represent her for a smooth and effective outcome.

"Jane was amazing. I put my trust in her to represent our ideas and plans in case conferences. She remained calm, emotionally detached and focused only on getting results for doing what was best for my daughters schooling. There were times she even redirected the plan to better meet my daughters needs," Garvey said.

Gathering Information

Begin gathering information from doctors, advocates, schools and insurance companies and make separate lists of available services from each one. Listing options helps parents see what's available so that they can make intelligent and informed decisions concerning their child's IEP.

Seeking out an advocate for advice and guidance before beginning this process is a good idea and some organizations offer free advocate services. There are also disability and family law attorney's who specialize in these areas. Contacting organizations like the Hamilton County Autism Support Group, Autism Society of Indiana and Autism Resource Network of Indiana, will open a network of families, professionals, services and organizations for gathering information about available options and services, as well as individual disability rights and laws.

Dr. Luis Escobar, medical director of medical genetics at Peyton Manning Children's Hospital at St.Vincent Health, offered steps to parents on getting started:

1. Start with a good diagnosis from a medical doctor.

2. Ask the doctor to outline recommendations for a documented care plan to share with insurance companies for coverage and school officials for IEP planning. 

3. Find insurance companies providing autism or ADHD related coverage. Ask about gaining coverage approval for Applied Behavior Therapy. Give the insurance company the physician's care plan to review for further guideline requests.

4. Take insurance guideline requests back to physicians to be adjusted with additional information to meet coverage approval.

5. Decide what school is best for the child by reviewing the services schools offer that will meet your child's needs.

6. Provide the school and principal with a copy of the diagnosis so that they are aware. Children will then receive help and understanding on all fronts.

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Jennifer Pace is a freelance writer, print/media art director and mother of 3 whose life's works is dedicated to making a better world for her own children and all children worldwide.

Tags: In This Issue, Special Needs

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