Being an Advocate.

by Blue Sky.

I have three children, one is all grown up, one was diagnosed with Asperger’s Syndrome last year and I’m still getting to grips with that. And then there’s Smiley. She is nearly 14 and has a diagnosis of cerebral palsy. From the moment she was born, she needed me to be there, to be her voice, to meet her needs.

When she finally came home from hospital in June 1997, we* quickly realized who was going to get her the services and care that she needed: us. She came home with an oxygen machine, a box of medicines, a list of appointments, and very little else. Smiley attended many different therapies and was allocated services depending on what was available not on her needs. And there didn’t seem to be any kind of plan or joined-up thinking. It was left to us to work out what she really needed and fight for it. We didn’t even have internet access until 1998, so at first our research was done through books and newspapers and by talking to people. I learned to do many things that scared the life out of me: ringing complete strangers for advice, advertising for and then working with volunteers. Eventually, we used the courts and the terms of the Irish Constitution to secure an education for Smiley, and she is now very happily settled in her school, at least for the next five years. It turns out that we were acting as advocates for our daughter by securing all this for her. Who knew? I’d never heard this term used in connection with children for special needs until I read an article on the Autism Support Network. For me I found it very motivating, something I need right now as I try and find the energy to make sure that my son also gets the education that he needs.

Seemingly an advocate is someone who supports, helps, assists and speaks on behalf of others: Parents are natural advocates for their children. Who is your child’s first teacher? You are. Who is your child’s most important role model? You are. Who is responsible for your child’s welfare? You are. Who has your child’s best interests at heart? You do.

You know your child better than anyone else. The school is involved with your child for a few years but you are involved with your child for life. You should play an active role in planning your child’s education.

The law gives you the power to make educational decisions for your child. Do not be afraid to use your power. Use it wisely. A good education is the most important gift you can give to your child.

As the parent of a child with a special need you have two goals:

1. To ensure that your child receives an education, and through the Irish Constitution article 42 and the Sinnott case Supreme Court Ruling, children with special needs are entitled to a free primary education up to the age of 18.

2. To build a healthy working relationship with the school.

What Advocates Do

-They gather facts and information and use them to resolve disagreements and disputes with the school.

-They know how decisions about the school and its pupils are made and by whom. And they have their contact details.

-Advocates know about legal rights. They know that under The Education For Persons With Special Educational Needs Act 2004, children with special needs can be educated where possible in a inclusive environment, that they can have the same rights to education as children who do not have special educational needs and that they are equipped by the education system with the skills they need to participate in society and to live independent and fulfilled lives.

-Advocates know the procedures that parents must follow to protect their rights and the child’s rights.

-Advocates know that planning prevents problems. Advocates do not expect school personnel to tell them about rights and responsibilities. Advocates read special education laws, regulations, and cases to get answers to their questions.

-Advocates learn how to use test scores to monitor a child’s progress in special education. They prepare for meetings, create agendas, write objectives, and use meeting worksheets and follow-up letters to clarify problems and nail down agreements. Because documents are often the keys to success, advocates keep written records. They know that if a statement is not written down, it was not said. They make requests in writing and write polite follow-up letters to document events, discussions and meetings.

-Advocates are not afraid to ask questions. When they ask questions, they listen carefully to answers. Advocates know how to use “Who, What, Why, Where, When, How, and Explain Questions” to discover the true reasons for positions.

-Advocates learn to define and describe problems from all angles. They use their knowledge of interests, fears, and positions to develop strategies. Advocates are problem solvers. They do not waste valuable time and energy looking for people to blame.

-Advocates know that parents negotiate with schools for special education services. As negotiators, advocates discuss issues and make offers or proposals. They seek “win-win” solutions that will satisfy the interests of parents and schools.

This article finishes with a call to action for all parents: have a vision of your child’s future and a plan of how to achieve this. Do not expect your child’s school, or anyone else to do this for you: As a parent you need to be an advocate to give your child the best chance of a bright future.

Taken from How to become an advocate for your child
By Peter Wright (courtesy of Spectrum Publications)

Read more at Autism Support Network.

*photo credit google images

Irish Autism Action

Irish Autism Action is an umbrella organisation with 33 member groups and 3,500 individual members. Our members range from the 13 Special Schools for Children with Autism to local support groups and are located in practically every county in Ireland.