KidsEnabled Magazine Article on 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
Georgia Advocacy Office (GAO)
Parents Educating Parents and Professionals (PEPP)
Council of Parent Attorneys and Advocates (COPAA)
Other Helpful Links:
National Center for Learning Disabilities
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 firstname.lastname@example.org..