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If your child has been referred for an evaluation for early intervention (EI) services, it’s easy to feel a little overwhelmed. There’s a good chance that you do not have prior experience with the EI system, and if your child was recently diagnosed with a disability, you may not have previous knowledge of his or her condition. Always remember that while a clinician can diagnose and treat your child, you know your child best. You’re familiar with his or her needs, desires and struggles. The active involvement of the parent in the EI program is highly critical for a successful individualized family service plan (IFSP), or treatment plan.
Becoming an Informed Advocate
Parental Rights
Understanding your family’s legal rights is part of becoming an informed advocate. You should have been provided with copies of relevant regulations and procedures, which protect the rights of families. If not, ask your service coordinator for them. Review these documents carefully and ask questions if you do not understand something. If your native language is not English, you have the right to request explanations of services in your native language.
Be aware that you must grant written consent for your child to be evaluated and receive services, and you may withdraw consent at any time. If a dispute arises, you have the right to file for due process.
Your Child’s Disability
In addition to understanding your family’s rights, learn more about your child’s disability so that you can help him or her more effectively. (See the Disability Profiles on this site for a start.) Ask your child’s pediatrician (or therapist) for information on his or her condition. Research government and university websites for authoritative information. Ask the professionals who evaluate or treat your child to recommend relevant and credible books and websites.
Getting Additional Help
Create a network of support. This might mean having a trusted family friend or relative attend IFSP meetings with you to provide moral support. It might also mean contacting a lawyer. It’s best to find a lawyer who specializes in special education law, as this is a complex field. A special education lawyer can help you navigate the EI process and negotiate with the IFSP team on your family’s behalf, as well as guide you through dispute settlement, either through mediation or a due process hearing. Contact your school district for a list of special education lawyers in your area, or call your state’s special education advisory committee for referrals.
Advocacy groups can also connect you to local resources. Browse the list of organizations here or contact your state’s education agency for a list of special education advocacy groups. Some examples of such groups are the Council of Parent Attorneys and Advocates and the Federation for Children with Special Needs.
Contacting Support Groups
Look for local parent support groups, and banish from your mind stereotypical images of people sitting in a circle commiserating with each other. Yes, a support group for parents of children with special needs can offer much-needed emotional and social support, but it can also help you advocate for your child. Networking with parents in similar situations can connect you to local resources. These parents have been through the early intervention/special education processes, and they can help you navigate the red tape.
If you cannot find a parent support group in your area, consider forming your own. Network with parents at your child’s daycare center, playgroup and library and ask whether they are interested in pooling their resources. Find creative ways for members of your support group to help one another; for instance, if you start a support group for parents of kids with speech disorders, your group might consider splitting the cost of hiring a private speech-language pathologist (SLP) for group sessions.
Participation in the IFSP Process
Remember that your role in the EI and IFSP processes is impactful. If you feel that your child needs extra help, you have the right to take the proactive step of requesting additional or different services. If you feel that the proposed IFSP does not meet your child’s meets, speak up about it and negotiate for change. Be an active voice in IFSP meetings, and don’t hesitate to control the direction of the conversation. Share all of your concerns for your child and family with the IFSP team.
Participation in Your Child’s Services
Your participation in the EI process doesn’t end when the IFSP is signed. Actively collaborate with the professionals who are providing services. They should provide regular progress reports; if they don’t, request them. Ask if you can observe therapy sessions so that you can better help your child at home. Ask about activities to do at home with your child that can improve his or her cognition, communication, social development or other areas that are a challenge. Doing so can help accelerate your child’s progress and improve his or her quality of life.