How to advocate for a CVI Specialist

As a parent, you’re the best person to make sure your child’s needs are being met, every step of the way. Here are some important tips from Rebecca Davis, who has a daughter with CVI, on how to get the best education for your child.

  1. Obtain a diagnosis: If you suspect your child has CVI, you’ll need to find a doctor who understands this visual impairment. That may mean seeking out a pediatric ophthalmologist or a pediatric neuro-ophthalmologist who has experience with CVI.
  2. Get a referral for early intervention: Once you get your diagnosis, your doctor may tell you that you have to wait a year before coming back to check on any changes to your child’s vision. If your child is between the critical ages of 0-3 for brain development, tell your doctor that you need to be referred to early intervention in your state. Every state should have an early intervention program, which includes developmental, occupational, physical and speech therapy. That way, your child can begin to learn between appointments.
  3. Understand the Individuals with Disabilities Education Act: This law was written to provide services for children with special needs. In particular, Part C was established because of “an urgent and substantial need to enhance the development of infants and toddlers with disabilities; to reduce educational costs by minimizing the need for special education through early intervention; to minimize the likelihood of institutionalization and maximize independent living; and to enhance the capacity of families to meet their child's needs.” Children with CVI fall into this category, so you can be confident that you have the law on your side as you advocate for your child.
  4. Fight for frequent, ongoing and specialized intervention: The law is implemented differently throughout the country. Some states may offer just one visit a year from a teacher of the visually impaired. If you’re not getting frequent, ongoing and specialized intervention, contact your state agency for better services. And if you still can’t get what you need, reach out to the local Deafblind Project in your state. The Deafblind community often has resources that can be useful for children with CVI.
  5. Make sure your child’s educators are trained in CVI: Ideally, your child’s teacher of the visually impaired and related services providers would have the Perkins-Roman CVI Range Endorsement. But if they don’t, start asking what type of training they’ve received. A single conference or workshop isn’t enough; they should have extensive, ongoing training and experience working with children with CVI. If you’re not finding teachers with the level of expertise your child needs, talk to administrators, such as special education directors, to push for more systematic training throughout your school district. Perkins eLearning offers a wide range of CVI courses for individuals, as well as tailored training programs for school districts.
  6. Find communities of families who have children with CVI: Having a child with CVI – and often multiple disabilities – isn’t easy. Check out the Pediatric CVI Society, as well as social media groups on Facebook and Pinterest, so you can draw from the experience of other parents. You can find answers to questions, share stories about challenges and successes, and get tips on how you can best advocate for your child. Your voice might be enough to affect change in your school district – and if you gather a group of committed parents, you can do even more.  

Learn more by watching Davis’ webinar, “CVI from a Parent’s Perspective.”