Have you heard the phrase free appropriate public education (FAPE)? You probably have if you have a school-aged child with special needs. A free education is guaranteed by a law called the Individuals with Disabilities Education Improvement Act (IDEA), which means your school district is required to provide children with special needs an education that’s appropriate to their needs.
“The school district you live in is responsible for payment of your child’s education, even if your child’s needs necessitate placement elsewhere,” explains Ken Vinikoff, a Special Care Planner with the Skylight Financial Group (www.skylightfinancialgroup.com) in Cleveland, Ohio, a general agency of Massachusetts Mutual Life Insurance Company (MassMutual). “You need to know your rights, and you need to know how to best work with the school administrators and teachers to get your child the educational services needed.” Sometimes that’s easier said than done. “The planning aspect is black and white,” says Vinikoff. “You can learn the laws and understand your rights, and you can aim to be the best at interpersonal skills and negotiation. However, the entire process of getting your child a good individualized education program (IEP) and working with the IEP team is a very emotional one. It’s your child, after all. And that emotion can get in the way of whatever skills you bring to the table.” Because the process can be so overwhelming, even without the emotional aspect, many parents choose to work with a special education advocate. Kerry Agins, a special needs attorney and partner at Siegel and Agins Co., LPA in Cleveland () has worked with Vinikoff and numerous families who have experienced the IEP process. While many families hire an advocate when they’ve reached the limits of their frustration, Agins believes an advocate can be helpful at any stage. “An advocate can guide beginners through the process, explaining terms and offering suggestions, such as how to establish IEP goals that are meaningful and measurable. Or the advocate can help with specific issues or when there’s a problem parents can’t quite put their fingers on.”
What does an advocate do?
An advocate is someone who assists parents in understanding and using the IEP process and can be a paid professional, a representative from a disability-related organization, or even a friend or relative who has had experience with special education services. Your state may also have departments or programs that offer advocacy services. Simply, an advocate can be anyone the parents bring to meetings about their child’s education. (www.yellowpagesforkids.com — A Wrightslaw page that enables you to search by state for professionals, organizations, schools, and programs that may help you.) “Often the people on an IEP team don’t have all the answers,” says Vinikoff, “so it can be helpful to bring in an advocate – someone with a different point of view to look at the situation and provide new ideas and solutions. An advocate can also be used to help bridge communication gaps between the parents and others on the team, or when communications have dissolved.” “The advocate can shift the focus and communicate in a different way,” adds Agins, “and can also help parents draft written communications, put together documentation to prove a need, and help determine educational targets.”
Before you hire an advocate
Your situation might benefit by someone who’s highly experienced in the particular field related to your child’s needs (ex., dyslexia, diabetes, autism). “It can support your effort to get the IEP team to understand why there’s a need for the educational services you’re requesting,” suggests Vinikoff. Advocates who have experience across multiple disabilities or with various school districts can also be suitable; they’ve built skills through a greater diversity of challenges and people. Also, find someone who knows special education laws, and can help you understand them. It’s a good idea to also know about special education and the laws yourself. The Council of Parents, Attorneys, and Advocates provides a wealth of information on its Web site (www.copaa.org) and also offers an annual conference that’s an excellent source for learning and networking for parents (next held in March 2011 in San Antonio, Texas). And check out these sites: — A federal government site about the Individuals with Disabilities Education Act, including the most recent updates; — The Wrightslaw Web site, full of resources about special education law and advocacy for parents, advocates, educators, and attorneys. Cautions? Do your research regarding advocates’ reputations locally. “You won’t want to hire one who has an adversarial relationship with your school district,” says Agins, “and it’s never a good idea to work with an advocate who’s just as angry as you might be.” Agins also reminds parents that each state has rules regarding how far an advocate can go. “If your negotiations have reached the due process stage – your final option when you aren’t getting the services needed, and which may result in a legal settlement – a good advocate will admit that you’ve moved beyond his realm,” says Agins. Vinikoff recommends, “This is the time to turn to a legal expert, an attorney who has experience with special needs and special education.”
Paying for an advocate
If you choose to hire an advocate that charges for services, it will be at your expense; IDEA doesn’t cover this cost, and your school district isn’t required to pay for it. However, your state may have a public agency or program that provides advocates or trained professionals at no cost to you. (Check the Wrightslaw Web page mentioned above for potential opportunities.) Additionally, you might contact non-profit organizations that serve people with disabilities. “For example, the American Heart Association may have a representative attend an IEP meeting to explain why your child’s health causes the need for special education services,” explains Vinikoff. “In Ohio, where I live and work,” says Vinikoff, “Parent Mentors help guide parents through the IEP process. Other states may offer similar services through their school districts. Mentors can be very helpful, but parents should realize their first loyalty is to their employer, the school district.” Some organizations offer help with private school expenses. For instance, in Ohio an autism scholarship program provides up to $20,000 toward costs. “Of course, private schools may cost more than that,” says Vinikoff, “but financial help such as this may help defray cost for parents who decide to educate their child privately. Persevere The process isn’t easy. In fact, it can be exhausting and frustrating. But remember these three things. First, you are your child’s best advocate. You know your child’s needs and potential, and you, above anyone else, want to create the best opportunities for his or her success. Second, ultimately, it’s the school district’s responsibility to pay for your child’s education, but the administrators also struggle to work within their budgets. Letting them know you understand their predicament could be your first step to a more productive working relationship. And third, Special Care Planners or other financial professionals that specializes in special needs have strong and wide-spread networks within the special needs community. Rely on them, not only for your special needs financial strategy, but to connect you with people and organizations that can help you in your pursuit of the best education for your child.