How and Why did I become a Special Needs Advocate??
I get numerous e-mails every year asking this question, and how others can become a child advocate. I simply don’t have the time to answer each individual question or e-mail as it takes away time from the families I serve, so I put together this note/e-mail with the hopes that it helps others. Goodness knows, there needs to be more people willing to help special needs children receive an appropriate education through the public school systems and their parents learn to navigate the difficult special education maze and process. I certainly encourage those of you interested to do so as I feel the first real requirement is to have “passion” and the second is to have “compassion” for those you serve. This is why so many advocates are actually also parents of special needs children themselves, like me. We start with those two requirements.
I became a child advocate simply out of necessity. I had two children with disabilities and I had to learn about their disabilities so I could help them, both privately with doctors and therapist and also in public school. I quit my office job of twenty years to stay home, so I had time on my hands to learn. I spent countless hours researching on the internet and networking with others in similar positions that also had children with disabilities. I had difficulty getting the services I needed for my children in public school, what I felt they were entitled to, and getting the school just to follow the law. At times I felt ignored, misunderstood and disrespected. I was misled and lied to and found as I learned about the law and disabilities in general, I knew more than the educators. These experiences only pushed me to learn more and advocate harder. With the bad, also came good. There were wonderful educators along the way that helped my children, gave me information at the expense of their jobs, and even defended and confided in me. To those, I will always be grateful, and my children have certainly benefited from their support.
I first joined CHADD (Children & Adults with Attention Deficit/Hyperactivity Disorder) and learned all about AD/HD and other co-morbid disabilities. This was my daughter’s first real diagnosis. I attended monthly meetings and became involved in our counties local support group. I got involved and liked it. It was great meeting other families with problems like ours. When our wonderful Coordinator stepped down and we couldn’t find someone else to take her volunteer job, I finally decided to step up to the plate and help out myself because I didn’t want our chapter to close. I liked being involved, learning and began to learn to advocate for others. I took calls and learned to listen to other parents talk about their children. In learning about co-morbid disorders associated with ADHD, I learned how to screen the caller so I could help them learn about what all might be wrong with their children. Most often than not, I discovered their children, like mine, had more than just AD/HD.
I scheduled CHADD meetings and had professional speakers come in to speak to our group. I had psychologists come in and talk about testing and various disabilities, psychiatrists talk about medications, attorneys talk about children’s rights, advocates talk about school eligibility and IEP’s, more docs talk about all the co-morbid disorders (LD’s, Dyslexia, anxiety, depression, bipolar, auditory processing, visual processing, sensory integration, motor problems, autism spectrum disorders, etc). I loved helping other parents, and began to build a following. I opened my AD/HD yahoo list servs and began posting information. I networked with local professionals in Atlanta, and then nationally. I began giving advice through disability list servs both locally and nationally.
Being a CHADD Coordinator, I was able to raise funds to pay for professional training for myself and my other volunteers. We attended the CHADD National Conferences and other local disability conferences that came to Atlanta. We were able to hear some of the best National speakers talk on ADHD, medication, co-morbid disabilities, testing, IDEA and disability law, parental & children’s rights, etc. We went to the Anxiety Conference, LDAG Conference, ADDA Conference, and IDA Conference. I would volunteer at these conferences to be a room monitor and help the organization so I wouldn’t have to pay their conference fees to save my CHADD Chapter money. I networked and got to know all the local disability organization leaders, and we began to combine efforts and collaborate. Finding volunteers was difficult, and we all needed more people.
In getting to know local disability organization leaders, we also got to know the leaders and attorneys at the GA Advocacy Office. They came to speak to our group, and taught us more about school special education law so that we could help parents get necessary special education help in their schools. I found that schools continuously violated children’s rights and I wanted to do more. As a CHADD volunteer, I was not allowed to represent children in IEP meetings. I found this is where parents really needed an advocate and real help. Encouraged by my daughter’s attorney, I decided to become a “professional” lay advocate. I wanted to be more than just a voice over the phone.
I was one of a couple of parents with special needs children who talked with Leslie Lipson at the GA Advocacy Office (GAO) and convinced her that we as parents needed more hands on help in IEP meetings. We didn’t just need over the phone advice; we needed a warm body sitting beside us to help us. Leslie listened to us. She developed and found funding to begin the PLSP (Parent Leadership Support Group) program to mentor and train parents of special needs children in special education and disability law. I attended the 1st PLSP training class, and now I have been a speaker at each class. To get more info on the PLSP program, go to GAO’s website at www.thegao.org .
Currently there is no certification to be an advocate. There are various state advocacy groups that provide training such as GAO. Check with your State’s PTI. The Parent to Parent organization is GA’s current PTI. www.parenttoparentofga.org . Wrightslaw also provides training and conferences www.wrightslaw.com . You can attend disability organization conferences and the National COPAA (Council of Parent Advocate & Attorneys) www.copaa.net conference for training as well.
It’s my opinion however that it takes more than a degree or training in special education law to be an advocate. A good special needs advocate needs to understand all about the disabilities they are going to represent. They need to know how to test for those disabilities, how to read and interpret psychological and educational testing, how to screen parents to determine what may be wrong with a child, and how to get children qualified for special education services under the various disability educational categories. A child needs to be fully identified in order to get appropriate school based services and if you don’t understand these processes, it is very difficult to navigate and negotiate school meetings.
Additionally it is helpful to have a network of professionals you can refer parents too if more information or help is needed. Part of my job as an advocate is to help parents both inside and outside the school. If a child needs a psychiatrist, psychologist, counselor, Occupational Therapist, Speech Therapist, tutor, behavior specialist, etc., it is very helpful to know great private professionals in these areas to help your clients. There are times that these professionals can be useful for documentation, for testing, to make record, and to dispute school testing and recommendations. I often use tutors to show that my clients can certainly do things and retain information the school system says they can’t. You will also need to know how to remediate disabilities for when the school district is not up for the task, as is often the case when dyslexia is involved.
In your network of professionals, find people who will help you. I had wonderful mentors who helped me learn along the way. I had psychologists and educational consultants who helped me learn about testing and how to interpret testing, psychiatrists who taught me all about medications and disabilities, and attorneys who taught me about the law and allowed me to attend IEP meetings with them to learn. Volunteer your time to learn, and then share your knowledge.
As an advocate, you must also know your place. I know what I can and cannot do. I know that I am not an attorney, and I know when I must refer a client to an attorney or not to take a case that needs an attorney. Know your limitations, and take a vow not to harm a case.
Learn to market your business. I found that helping parents for free and giving advice was great marketing initially for my CHADD Chapter, and now for my business and I’ve always enjoyed doing it. Opening and joining various disability list servs served this purpose for me. Ultimately we opened the wonderful GA Children’s Network (GCN) in order to help families. Through GCN we met local parents, disability organization leaders, disability professionals and each other, upcoming advocates. Networking with other disability professionals I met and liked also helped. I refer to them, they refer to me. In my opinion, the best and most rewarding marketing however is “word of mouth”. Getting referrals from previous clients is always special and testimony that I’ve done a good job, helped a child, and made a difference in their life. I often laugh and say if nothing else, I’m cheap therapy for parents. Having someone with them in school meetings is comforting, makes them less anxious, and defers the blame game often school districts put on parents. When parents hire an advocate, the advocate is now the “bad” guy, not the parent.
So to answer the “HOW” question, I feel my experience and training as a volunteer CHADD Coordinator gave me the background to transition easily to a professional lay advocate along with all the independent research I did as a parent. I had many professional mentors to help me along the way. I try to repay those mentors by teaching what I’ve learned to new PLSP graduates and sharing information on my website and list servs. The PLSP class and continued support of the GAO was icing on the cake, and gave me the knowledge and confidence I needed to start my lay advocacy work professionally and ethically and to continue to do so for all these years.
I hope this article and my continued work helps and motivates others to get involved and to go into this line of work. It is the greatest and most rewarding job in the world!!
Advocacy & Consulting Services - IEPadvocate4you
Carol Sadler, Special Education Consultant/Advocate
GA Advocacy Office PLSP I Graduate
1105 Rock Pointe Look
Woodstock, GA 30188
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"There is nothing more unequal than the equal treatment of unequal people." ---- Thomas Jefferson
“Refrain from Restraining, Secluding and Corporal Punishment” ---- Carol Sadler, Advocate
CONFIDENTIAL AND PRIVILEGED
Information contained in this communication is confidential and privileged. It is not meant to represent legal or medical advice, but rather advice given based on my knowledge as a trained Parent Advocate by the GA Advocacy Office, Council of Parent Advocates & Attorneys, CHADD, LDA, the GA DOE Parent Mentor program as an invited guest and the special education attorneys that I often work with on educational matters. Please do not forward without my permission.