Video
CVI Parent Advocacy
Rebecca shares insights, ideas, and resources for navigating the system barriers CVI families come up against.
Access the video transcript.
Rebecca Davis, a CVI parent advocate and Director of Transition Projects at the Federation for Children with Special Needs (FCSN), talks about the current educational and policy landscape and gives context for why it’s so hard to gain traction when advocating for your child’s needs. Rebecca shares insights, ideas, and resources for navigating the system barriers we all come up against as CVI families.
Advocate, advocate, advocate. Rinse, rest, repeat. Use your voice. Your child matters, and your voice matters. Tell your story.
Below are some takeaways from the transcript of Rebecca’s presentation.
Context matters
This is hard, it’s not you. As families and caregivers advocating for our kids’ right to an accessible education, we have to understand the broader policy and education landscape so we realize why we are not getting traction—not from schools, the district, and local and state legislators.
You cannot change what you don’t know. Advocacy becomes easier when you know what the challenges are.
IDEA has never been fully funded by the federal government
- The Individuals with Disabilities Act (IDEA) is the federal law that mandates that all kids with disabilities have access to a free, appropriate public education (FAPE) that meets their unique needs and prepares them for education, employment, and independent living. IDEA has been federal law for almost 50 years, but it’s never been fully funded by the federal government.
- 40% of IDEA spending was supposed to be covered by the federal government, and states would fund the remainder. Without full federal funding, states decide how and whether to fund special education services. And that could be some of the things you’re running up against when you are talking to school districts.
- IDEA is still federal law, and school districts are mandated to give your child appropriate educational programming and services. But when funding is an issue, nobody will sit at your IEP table and tell you that.
Know where your state falls in meeting the requirements under IDEA Part B (ages 3-21) and Part C (ages 0-3)
- As of February 2022, only 22 states met the requirements for compliance under IDEA under Part B, preschool all the way up to the age of 21. And 30 states met the requirements under Part C, which is early intervention. Find out how your state is doing with implementing IDEA.
- At a recent Office of Special Education Programs (OSEP) conference, US Secretary of Education Miguel Cardona said, “Almost 50 years later, we still, at best, only have half the states meeting the basic requirements of IDEA.” Cordona continued to discuss that IDEA is supposed to be just the baseline, not the gold standard.
- If more than half of the states are not even giving us the baseline, the state of special education is in crisis right now.
- Knowing the state of IDEA compliance provides some context into why certain decisions are being made or why it’s difficult to get traction with basic services to provide a free, appropriate public education (FAPE) for your child with CVI.
Educating our kids is not a miracle. It’s a right for every child in America under the Individuals with Disabilities Education Act (IDEA). Their education is a right. The miracles are the children themselves. And what we do for them will be the best thing we ever do.
Advice for navigating some of the challenges
You are going to be in the position where you’re advocating for the very specialized needs of your child to have access to a free and appropriate public education (FAPE).
- A big challenge families of kids with CVI face is a lack of awareness of CVI by teachers, service providers, support staff, administrators, and doctors. Here’s the deal: you’re going to very likely have to teach school staff about CVI and the unique needs of your child. Many of us have been doing it for years to the best of our ability. Sometimes, we’re not great at it. (And should it really be our job?) The great thing about this challenge is that today, you have so many more resources than you ever have before.
- When you have a team that is curious, listens, and wants to learn more about CVI and your child, this will help build a strong team that can meet the specialized needs of your child.
“Low incidence does not mean low priority”
- If you feel like you’re getting pushback, this is your phrase: “Low incidence does not mean low priority,” Dr. Larry Wexler, OSEP Director of the Research to Practice Program. For child with visual and hearing impairments, they are often lumped into a low incidence IEP category, where school districts often don’t have the services and programming needed to meet the individualized needs of children with CVI. This is not an excuse.
- Learn more about recent guidance on determining eligibility for students with visual impairments from the Office of Special Education Programs (OSEP).
You have a seat at your child’s IEP table
- You are an equal member of that IEP team and it’s written into IDEA that you as a parent have full participation in this process.
- Prepare 3-4 priority questions before your IEP meeting. You’re not going to get every question asked, especially when you have a complicated kid. You can always call another meeting. If you’ve got complicated kids, and you don’t understand something, then say, we’ve got to do this again because I didn’t get this answered. And they have the obligation to help you understand, and to answer your questions, and to provide your child a free and appropriate public education.
- Ask questions, professionally, politely, and persistently. Your child needs a TVI to provide services and collaborate with the school team. This is about access to their education. If you have a new TVI, ask them, how long have you been a TVI? How many students are on your caseload? If you hear someone say 40 or 50, that might be a red flag. How many schools do you serve? Get granular. You’re going to see my kid, and for how long? And what does that mean? And what are you going to work on that day? And is it going to be the same time every day, or are you going to be able to do it throughout the week so you can see how the kid is learning at different times in the day?
- You might get a teacher of the visually impaired who is an incredible professional, but who hasn’t done a lot of training in CVI. Ask: what coursework have you completed? What webinars have you watched? How many kids with CVI have you worked with?
For our kids to receive FAPE, they need to be taught very specifically in the way that they can learn.
- FAPE is the key to everything. Our kids are not incidental learners. They can’t walk into a room and just with a glance, understand up and down, and in and out, and color. And if there’s a hole in the floor, and if there’s a tire in the corner, all this information you get when you’re typically sighted just at a glance. Our children don’t get that.
- Our children with CVI need to be taught very specifically in the way that they can learn. That’s what this is about. We are advocating for their quality of life. We are advocating for them to have access to the education that can help them be as independent as possible and to give them a voice.
- “It’s not extra, it’s access,” from Julie Durando from the National Center on Deaf-Blindness. What we’re asking for is not extra. And don’t you let anybody make you feel like it is. What you’re asking for is access to a free and appropriate public education for your child, the education that they are entitled to. It is their right under the Individuals with Disabilities Education Act. If anybody on the IEP team tries to say, we don’t have the staff available, or it’s too expensive, or it’s not in the budget, don’t accept these answers. They owe your child FAPE.
Advocate, advocate, advocate. Rinse, rest, repeat. Use your voice. Your child matters, and your voice matters. Tell your story.
- When you feel discouraged, and you feel like your glass is half empty or totally empty. Know that you are refillable. Not only are you refillable, there are so many more of us now. You’re not in this alone. When you need to take a break, take a break. Get support. Talk to another parent.
- Love that kid the best you can. Make sure to take the time to let them just be a kid. Learn when you can. These are such important times. And take care of yourself.
- Educating our kids is not a miracle. It’s a right for every child in America under the Individuals with Disabilities Education Act (IDEA). Their education is a right. The miracles are the children themselves. And what we do for them will be the best thing we ever do.
Our children with CVI need to be taught very specifically in the way that they can learn. That’s what this is about. We are advocating for their quality of life. We are advocating for them to have access to the education that can help them be as independent as possible and to give them a voice.
Resources
- National Center on Deaf-Blindness. Reach out to your regional Deafblind project to help with advocating for services.
- ParentCenterHub.org has information about IDEA and your state’s parent center that you can go to for advocacy information and resources.
- Find out how your state is doing with implementing IDEA.
- Learn more about recent guidance on determining eligibility for students with visual impairments from the Office of Special Education Programs (OSEP).
