A Conversation with a Parent Advocate on How to Access and Navigate Early Intervention
Recently I spoke with Jen Dryer, https://jendryer.com, an educational consultant and parent advocate in Washington, D.C., who helps parents navigate the complex and emotionally challenging process of getting their children, who have or are suspected of having a developmental delay, the services and therapies they need through early intervention and special education. I was drawn to Jen’s story and work as it demonstrates the power of a parent’s instincts and effective advocacy in supporting’s her son’s early development and the tremendous benefits early intervention can have in a child’s trajectory.
I am a non-legal volunteer with the Parental Readiness and Empowerment Program (PREP), https://prepparents.org. PREP helps parents more effectively advocate on behalf of their children in their education by providing parents free resources and by offering a free virtual e-clinic to parents in several states regarding their legal rights in their child’s education, from beginning school through high school.
Below are some of Jen’s key tips for parents on how to access, navigate, and effectively advocate for your child in Early Intervention (“EI”) as well as resources I’ve identified. If you arm yourself with information, stay engaged, organized, and feel supported, you will be more effective at making sure your child receives the support he or she needs to meet critical, early developmental milestones.
You can read more about Jen’s story here: https://www.beltwaybambinos.com/tapping-into-the-often-free-resources-in-washington-dc-for-early-intervention-maxs-inspiring-story/.
You an also read my overview of Early Intervention at: https://www.momsrising.org/blog/why-infant-and-early-child-development-i...
- Trust your instincts: You Know Your Child Best
You know your child best. While your pediatrician, your child’s early childhood educators and grandparents can refer your child for an early intervention evaluation, you as a parent can request your child be evaluated free of charge for Early Intervention or seek a private evaluation. You can seek an evaluation even if your pediatrician is not concerned about your child’s development but you are. An evaluation will assess your child’s physical, social, language, adaptive and cognitive skills, and is not harmful to your child. The key is to trust your instincts and to seek an evaluation as early as possible, given how rapidly young children develop, and how critical early intervention can be in reducing and closing gaps in development.
You can find your community’s Early Intervention program by visiting the ECTA Center’s early intervention website: http://ectacenter.org/contact/ptccoord.asp. When you call, you can explain that you are concerned about your child’s development and that you would like to have your child evaluated under Part C of IDEA.
- Arm Yourself with Information About Early Development & Document Your Concerns
Take advantage of free and trustworthy resources to better understand child development and to make sure your child is on track for meeting his developmental milestones. The below list of resources is not meant to be exhaustive. The nonprofit, Zero to Three, provides resources to parents on the central role you play in your child’s early development and activities you can do to support your child’s healthy development as does the American Academic of Pediatrics. (https://www.zerotothree.org/parenting & https://www.healthychildren.org/english/ages-stages/pages/default.aspx ). The Centers for Disease Control and Prevention (CDC) offers resources for parents on developmental milestones, tools for tracking your child’s development, questions to ask your pediatrician if you have concerns (https://www.cdc.gov/ncbddd/actearly/concerned.html), as well as information on developmental screenings and seeking an evaluation from a specialist. First Signs (http://www.firstsigns.org) aims to educate parents and other professionals to ensure the best developmental outcomes for every child. The U.S. Department of Education maintains a list of resources and organizations to help families learn about their child’s development and organization and supports. (https://www2.ed.gov/about/inits/ed/earlylearning/inclusion/resources-for-families.html) Every state has at least one Parent Center funded by the federal government to provide information and guidance to families of children with disabilities which can be an excellent resource on your state’s early intervention process, may host parent workshops on topics including parent advocacy and offer free legal services. You can find your Parent Center at: http://www.parentcenterhub.org/find-your-center/.
If you have any concerns about your child’s development, it’s a good idea to keep a notebook with your observations and dates for you to share specific instances or patterns with your pediatrician and early intervention.
- Keep a Record of All Important Information
Be sure to write down any important information including the name and contact information of your community’s early intervention program or what is known as Child Find as you move through the Early Intervention process. Child Find operates in every state to identify babies and toddlers who need early intervention services because of developmental delays or disability.
Make sure to keep copies of all important correspondence and forms in whatever way will be easiest for you to keep track of and update (note book, email folders, binder, etc.) and include the following: contact information of key organizations and people, appointment dates, consent forms you sign, requests you make, evaluations and assessments, progress reports, IFSPs, medical records, and any other documents that are important regarding your child’s development or the EI process.
- Consider if You Would Like Use an Area Special Education or Parent Advocate to Help You Navigate the EI Process
You can bring a friend or family members with you to EI meetings for emotional and tactical support. You also connect with your local Parent Training and Information Center for locating advocacy services or work with a private parent or special education advocate. The Council of Parent Attorneys and Advocates also offers this helpful resource with Guidelines for Choosing an Advocate (http://www.copaa.org/?page=guidelinesadv). Understood.org has an overview of what distinguishes an advocate from an attorney as the two types of professionals can support you in different ways and stages of the process. (https://www.understood.org/en/school-learning/your-childs-rights/dispute-resolution/the-difference-between-special-education-advocates-and-attorneys)
- Prepare for Meetings with Your EI Team & Don’t Be Afraid to Ask Questions
While you may feel intimated, overwhelmed and a whole range of emotions about your concerns about your child’s development and interacting with a range of child development experts, it’s critical to educate yourself about the EI process and your child’s needs. Also, don’t be afraid to respectfully ask clarifying questions throughout the process.
- Come to all meeting with the EI evaluation and IFSP team with your key questions written down and take notes, so you make sure to raise your major areas of concern and questions. It can be easy to forget in the moment!
- Ask for clarification of any terms you do not understand, or if you have questions regarding a diagnosis. Request that information be provided in your native language and for translator services for meetings, if necessary.
- Request further evaluations if you feel they are needed.
- Ask for more information and clarification if you don’t understand what services are being recommended and with what type of professional or therapist, start dates, length of services, and how your child’s progress will be assessed.
- If you are concerned your child is not on track for meeting IFSP goals, ask what steps your IF team recommends toward helping your child meet IFSP goals and whether such goals should be revised.
- Build Positive Relationships & Communicate Regularly
Build a positive relationship with all the members of your child’s Early Intervention team and professionals working with your child. This rapport can help keep the lines of communication open, reduce the chances of a misunderstanding, and make it more comfortable to raise any questions and concerns you may have along the way. You know your child best and you should share your unique insights into your child’s personality, strengths and areas of concern with your child’s EI team in order to ensure that the evaluation process is as responsive as possible. If your child found is eligible for services, your input as a parent will also be vital for ensuring your IFSP team writes and implements an IFSP plan with meaningful goals for your child and is culturally responsive.
Make sure to observe any therapy sessions your child engages through EI as best you can so you understand what skills your child is developing and can carry over such support for your child at home. If your child is receives EI services in an early childcare setting, it is helpful to regularly communicate with your child’s teachers as to their observations regarding your child’s progress. Speak with your child’s IFPS service coordinator if you have any concerns about the services your child is receiving including if you are concerned that a particular therapist is not a good fit for your child and family, your child might benefit from an additional or different services, or need services in a different setting or with greater frequency. In Jen’s case, adding occupational therapy (OT) to her son’s services several months after he began working with a speech pathologist, greatly enhanced his language development. (https://www.beltwaybambinos.com/tapping-into-the-often-free-resources-in-washington-dc-for-early-intervention-maxs-inspiring-story/). You can also ask the therapist to provide progress reports.
- Know Your Rights: Safeguards for You and Your Child
The Individuals with Disabilities Education Act (IDEA) is designed to protect the rights of children with disabilities and their parents’ rights. Be sure to ask your EI Service Coordinator to inform you of your rights at each step of the EI and IFSP process. Each state publishes information about their specific Early Intervention program that will include information about procedural safeguards. You can look up state specific resources at: http://ectacenter.org/topics/procsafe/stateonlinec.asp
What to Do if your Child is Found Ineligible for EI
If you disagree with the results of an evaluation, you can challenge the decision. You can request to meet with officials to talk about concerns through mediation. You can also request an impartial due process hearing. You can also ask your service coordinator to help you find services in your community. Understood.org has a great resource on things to do if your child is found ineligible for early intervention at: (https://www.understood.org/en/learning-attention-issues/treatments-appro...).
- Find Community & Support
The early intervention process is emotionally and logistically intense. As Jen noted, it’s not uncommon for parents to feel afraid, in denial, guilt and sadness depending on the moment on top of managing all your responsibilities.
Given all this, it’s important to find other (nonjudgmental) parents in whom to confide, serve as a support network and help you develop the fortitude and confidence to effectively advocate for your child. Connecting with parents in similar situations can connect you to local resources, insight and success stories that keep you feeling motivated.
The Individuals with Disabilities in Education Act (IDEA) provides money for each state to have at least one Parent Training and Information Center. PTIs offer parents of children from birth to age 22, who have all types of disabilities and developmental delays, free workshops, support and information on how to make the most of their child’s education including about specific disabilities and issues, parental and child rights under the law, educational specialists, legal assistance and other local, state and national resources. A state-by-state listing of Parent Centers can be found at: http://www.parentcenterhub.org/find-your-center/. The Child Mind Institute, offers a resource on fighting caregiver burnout (https://childmind.org/article/fighting-caregiver-burnout-special-needs-kids/). Understood.org also offers resources on finding friendship and support. (https://www.understood.org/en/family/relationships/finding-friends-support/video-you-are-not-alone & https://www.understood.org/en/family/relationships/finding-friends-support). Autism Speaks also offers a tool kit specifically designed to help parents of children diagnosed with autism in several concrete ways including how to find support so parents don't feel alone or isolated. (https://www.autismspeaks.org/family-services/tool-kits/family-support-tool-kits). This is by no means an exhaustive list of resources! palsy and other developmental delays and disabilities for support, advice, and information.