KidsEnabled Magazine Article on Parent Advocacy

Fall 06 Article

http://www.kidsenabled.com/articles/features/parentadvocacy.html

Parent Advocacy
By Maggie Parry

Sometimes fighting for your child’s educational rights can be an overwhelming and lonely task. But parent advocates, an underutilized resource, can help guide and ultimately empower parents of children with learning differences.

When Heidi Fernandez’s son, Andrew, was diagnosed with autism, she knew he would need an individualized set of educational supports and services to ensure he reached his learning po­tential. But as she sat through her first round of individualized education pro­gram (IEP) meetings, she realized those supports were about as easily attained as a winning lottery ticket. She discov­ered that, because educators didn’t ful­ly understand Andrew’s atypical learn­ing style, they were less than willing to make changes in the classroom. She felt discouraged in her lack of knowl­edge regarding special education law and how to negotiate within the school system. Instead of the IEP meetings moving Andrew’s goals forward, they ended in stalemates because of fund­ing disputes, school policy confusion or staffing issues. Fernandez realized that if she was going to speak effec­tively on Andrew’s behalf, she would need crucial information and support. Desperate to obtain the tools Andrew needed for school success, and armed with the belief that “knowledge is power,” Fernandez turned to a parent advocate.

A parent advocate acts as “coach” to provide the information and training necessary to empower parents to ad­vocate for their children in a school set­ting. Once Fernandez enlisted the help of a parent advocate, she began to see a change in the outcome of Andrew’s IEP meetings. Her advocate helped her develop negotiating skills and function as a learning resource for teachers re­garding Andrew’s specific learning dif­ferences. When seeking a functional behavioral program for Andrew’s IEP, Fernandez used her newfound skills to successfully push for a timely and correctly executed assessment. This resulted in a realistic plan of tar­geted positive behaviors and rein­forcements to facilitate Andrew’s success during the school day. “As I became more knowledgeable,” Fernandez says, “I gained a strong voice and power in those meetings. I had more confidence to assert my­self for Andrew and his needs.”

Fernandez’s story reflects the experi­ence of many parents who seek sup­port services for their exceptional or challenged learners. Parents play a crucial role in making the decisions that shape a child’s academic suc­cess. For parents of children strug­gling with learning differences, that role exponentially intensifies as classroom and individualized sup­ports become mandatory for effec­tive learning. Parents might know their children better than anyone else, but when faced with the com­plexity of education law, school pol­icies and over-worked educators, they find themselves lacking critical tools necessary for speaking on be­half of their kids. They can become
Overwhelmed by what they do not know and consequently feel they have no effective voice in meet­ings or the power to help develop an effective plan for their children. Parents often don’t have the time or emotional energy to research the in­formation that advocates can bring to the table.

Like Fernandez, Carol Sadler felt the school system was not hearing her concerns adequately. Her daugh­ters, Christina and Angela, both diagnosed with multiple neurologi­cal disabilities, struggled in reading and math. They were not progress­ing, and Sadler could not get the proper supports in place to ensure their learning success. After seeking the advice of multiple professionals outside the school system with min­imal results, Sadler sought the help of a parent advocate. She became well-trained in negotiating skills, knowledgeable about her daugh­ters’ rights under the law and con­fident in her own ability to run an IEP meeting where her child’s needs remained at the forefront. Her expe­rience opened her eyes to the greatneed in the school community for advo­cates to help train and guide parents. Af­ter serving as coordinator for the Learn­ing Disabilities Association of Georgia for four years, Sadler underwent parent advocacy training through the Georgia Advocacy Office’s Parent Leadership Support Project and began advocating for other parents in her community. One of her priorities as a parent advocate is to understand the child’s learning difference and how that affects not only academic goals, but social, emotional and behav­ioral issues as well. She works closely with parents to teach the skills necessary to navigate meetings and obtain the nec­essary services and supports.

Claire Dees is also a parent advocate and president of Spectrum, Gwinnett Coun­ty Autism Support Group. She focuses on helping teachers and parents work as a team. Her advocacy goals include teaching parents how to be a resource for teachers. “The reality is that parents have to train teachers regarding their exceptional children,” she states. “Both parties need to think outside the box if academic goals will be met. If teachers consistently see parents as ad­versarial, and parents perceive teachers only as unyielding, then academic goals get lost in the impasse and the child loses the most.” Dees’ advocacy ser­vices include conducting parent/ teacher seminars, which teach communication and negotiation skills, as well as effective ways to share resources and ideas.

Services Offered by Parent Advocates

Resources for Finding a Parent Advocate Georgia Parent Mentor Program www.parentmentors.org The goal of this program is to nurture communication among parents & educators. Though parent mentors are not advocates, they can help parents locate advocates who are familiar with your child’s school system. This is a free service provided by the school system. Georgia Advocacy Office (GAO) www.thegao.org The GAO office has trained almost 200 parent advocates who have worked with more than 1,500 families. The organization deals with all disabilities and developmental levels. While the GAO cannot guarantee a parent advocate match for your child’s particular challenges, they make every effort to find an advocate who is appropriate. The GAO does not charge for their services. Call the GAO office at 404-885-1234 to request a resource advocate. Parents Educating Parents and Professionals (PEPP) www.peppinc.org PEPP seeks to provide families with information that will help them navigate the educational system and prepare for the future. PEPP’s supports include education for parents on IDEA, methods and skills to establish working relationships with professionals in your child’s life, a workshop training program, a resource center library, trained staff and referrals and personal assistance. Council of Parent Attorneys and Advocates (COPAA) www.copaa.org COPAA is an independent orga­nization of attorneys, advocates and parents. The group’s primary mission is to secure high-quality educational services for children with disabilities. Carol Sadler Special Education Consultant/ Advocate Claire Dees President, Spectrum, Gwinnett County Autism Support Group Other Helpful Links: National Center for Learning Disabilities Georgia Department of Education, Exceptional Student Division Parent to Parent of Georgia Atlanta Alliance on Developmental Disabilities Georgia Children’s Network, a listserv where parents, advocates, attorneys and professionals network

Advocacy services can be as simple as helping parents write an effective letter to school ad­ministrators, or as involved as teaching parents the subtleties of special education law.

• Sometimes all parents need is an hour or two of telephone consultation. Many parents, though, need someone to at­tend school meetings with them and speak on their behalf. Ser­vices will vary from advocate to advocate. Other services that an advocate might provide are: Teaching parents and educators which accommodations and modifi­cations are appropriate for a child
• Developing an effective IEP plan
• Reviewing documentation and test results to determine if a child is eli­gible for special education services
• Working with the school to develop positive behavior plans
• Obtaining a child’s educational re­cords
• Locating professionals in the com­munity such as developmental pedi­atricians, psychologists, therapists, social workers or attorneys
• Locating community resources such as recreational and social opportuni­ties
• Helping parents become well-versed in education law
• Obtaining appropriate testing that is paid for by the school system
• Documenting cases
• Recommending resources for treat­ment and therapy options
• Educating teachers about a child’s specific learning differences.

Choosing the Right Advocate

Choosing a parent advocate who tru­ly understands the unique needs of your child could potentially be criti­cal to that child’s academic success. Asking the right questions enables parents to find the best advocate for their child’s specific set of learning challenges. Following is a checklist of questions and concerns to bring to the table when interviewing pos­sible advocates.

Training and experience
While there is currently no stan­dard certification process for advocates, there are diverse and valu­able training opportunities (see side­bar above). Does the advocate keep his or her training current by attend­ing workshops and conferences? Parenting a child with a learning difference is not necessarily enough experience to be a successful advo­cate. Always ask a potential advo­cate for references. Speaking with parents who have experience with a particular advocate offers valuable insight when making a choice.

The maze of educational policy and law
Advocates should be familiar with the school system and be able to translate for parents the compli­cated “language” of educational policies, procedures and legislation. They should be comfortable nego­tiating in IEP meetings. Are they fa­miliar with the Individual with Dis­abilities Education Act (IDEA) and other legislation involving children with learning differences? Some advocates have an area of exper­tise involving particular skills such as conflict resolution, knowledge of behavioral programs and supports, management of documentation and investigative procedures.

Every child is unique
Effective advocates will take the time to acquaint themselves with the unique abilities and challenges of your child. Parents should expect the advocate to explain how the child’s learning difference will influ­ence him/her in an academic envi­ronment. If unfamiliar with a par­ticular learning difficulty or disabil­ity, is the advocate willing to learn and become knowledgeable about that learning difference? How much time will the advocate spend with the child? The unique needs and goals of each child is always a prior­ity for a successful advocate.
Other issues to consider fees
If an advocate charges for ser­vices, make sure you understand the payment schedule and how fees are determined (hourly or flat rate). Many advocates who have gained valuable experience and knowl­edge advocating for their own chil­dren become advocates for other families. Out of a genuine interest in helping others they usually offer their services for free. A more com­plicated case might require the ser­vices of a paid advocate who spe­cializes in a specific disability or works in partnership with an educational attorney’s of­fice. Remember, it’s impor­tant to choose an advocate whose services and expertise are the best match for your child.

Documentation and record keeping: Determine who will be responsible for document­ing meetings: you or the ad­vocate. How will files be main­tained, and who will keep the copies at the advocate’s place of business? Make sure you know how to obtain a copy of your child’s records when you need them.

Communication: What is the best way for parents and the advo­cate to keep each other informed re­garding issues, upcoming meeting dates and other important items?
Legal Issues: Some advocates work independently and others work in partnership with attorneys. An ef­fective advocate can help parents determine if an attorney is necessary. Remember, advocates can offer legal infor­mation and help parents negotiate and resolve dis­putes, but they are not lawyers.

Parent advocates are a valuable tool in helping par­ents of atypical learners find a strong voice for their child. Whether parents need guidance with letter writing or someone to attend IEP meetings, the experience and exper­tise of a parent advocate provides direction on the journey through the school system.

Maggie Parry is a freelance writer/editor who has a child with a seizure disorder and autism. She can be reached at maggieparry@bellsouth.net.

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