Being an Advocate for Your Child
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When most people hear the word "advocacy," they think of the efforts, even struggles, of individuals who take action to influence government programs and policies. Although many parents engage in this level of advocacy, organizing to put pressure on policymakers and officials, advocacy can also take place on a more personal level. It means making the case that something is important and needs to be done. When families advocate for their children that's what they're doing—presenting information and making requests in a focused way to ensure that something important gets done.
In a perfect world, the specialized services that your child is entitled to receive would always be available and easy to obtain. In the real world of ours, however, the full range of necessary services may not be available unless you request them, point out their importance, then actively work to get them—that is, unless you "advocate" for them.
Some state departments of education and local school districts may not have the money and staff to do everything you want to have done for your child, disabled or not. In particular, there is a serious shortage of specially trained certified teachers of students with visual impairments. It's estimated that at least twice as many of these teachers are needed to meet today's demand for services. This shortage means that many communities don't have a teacher trained to provide the special services a visually impaired child needs. And because there are relatively few visually impaired children in the school population, your child may be the first to need special services in your school district. That situation is particularly true in rural areas.
Working to Make Things Happen
Under the Individuals with Disabilities Education Act (IDEA), the school system is required to do what it takes to provide a certified teacher of students with visual impairments to work with your child if the goals on your child's Individual Education Program (IEP) fall under the responsibility of this professional. The same is true for provision of a certified orientation and mobility specialist. The reality is that parents need to know the types of specialized services their child may need so they know what to request. That's the first step in advocacy, and you may find that you have to become your child's strongest, most persistent advocate. You may also find that the role comes naturally to you.
Being an effective advocate doesn't require specialized skills or extraordinary capabilities. The most important ingredients are:
- Understanding your child's needs
- Knowing the law that governs your child's access to special education services
- Listening to others and ensuring others listen to you
- Following through so that progress is made in a timely manner
Dealing with the School System
Having a positive relationship with key staff members of your child's school district is helpful and important. Your goal is to establish a strong, cooperative working group that includes your child's teachers, therapists, and other professionals along with the district staff. Being actively engaged as a member of your child's educational team can win respect from the school personnel and provide you with useful information and connections. Here are ways you can demonstrate your commitment:
- Attend all IFSP or IEP meetings, or as many as you can (contact the team in advance if you need to reschedule)
- Maintain consistent communication with team members between team meetings
- Call or e-mail team members to keep informed about your child's educational progress and to provide information to staff
- Find out about ways you can support the efforts on behalf of your child by reinforcing IFSP and IEP goals at home
There are a number of steps you can take to help bring others to see your point of view and meet your child's specific needs:
- Present clear reasons for your requests
- Provide accurate, helpful information
- Acknowledge others' viewpoints
- Apply persistent but polite pressure
This four-point approach can form the core of productive, effective advocacy for your child. But talking to other parents and advocates can provide you with critical support and ideas. Connecting with parents' groups and national organizations concerned with the well-being of visually impaired children and adults is therefore another powerful tool.