3 ways to advocate for a CVI-accessible camp experience

In our schools, most of us are considered misfits. We are often ignored, mistreated, teased, or overlooked. Each of us struggles with something—physical, emotional, mental—that makes us just a little different than others. Sometimes a lot different. But here, we were awesome, we were noble, we were able, and we were cool!

 – Melody describes her camp experience in “Out of My Heart”

Melody, the vibrant protagonist of Sharon M. Draper’s middle-grade novel “Out of My Heart,” is often excluded and overlooked. She finds it difficult to make friends and participate in school activities because her peers and teachers have trouble seeing past her wheelchair and AAC.

When Melody finds out about a nearby sleepaway camp conceived for kids with a range of abilities, she persuades her parents to allow her to attend. It’s a stretch experience that ends up exceeding her expectations, largely because of the camp’s mission to provide the quintessential camp experience for kids who are so often left out. It is also a testament to Melody’s self-advocacy, willful independence, and supportive parents.

While this is a work of fiction, the premise is realistic. 

The benefits of a camp experience that meets a child’s needs and goals — like making friends around the campfire or trying new activities — should not be underestimated. Camps can be seen as a rite of passage for kids, a step toward independence. They provide enrichment, a chance to build social skills, exercise, a way to try new things without fully committing to a new hobby or sport, and a welcome break from the typical day-to-day school life. 

According to a study by Lieberman et al., camps can also support the Expanded Core Curriculum: assistive technology (AT), career education, compensatory skills, independent living, orientation and mobility (O&M), recreation and leisure, self-determination, sensory efficiency skills, and social interaction.

However, it can be daunting to find the right program.

Sometimes we may advocate for accommodations in a mainstream setting, other times we may enroll our children in programs that specialize in meeting unique needs. Either way, it takes a significant amount of research to identify flexible and supportive opportunities.

Here are some ideas for researching camps and activities, communicating about your child’s needs, and preparing your child for meaningful participation. 

1. Vet activities

• Start early: Some camps open registration many months in advance. Plus, an early start allows for time to apply for scholarships from civic or community organizations.
• Set your search criteria. Nemours KidsHealth suggests narrowing your search by deciding what type of camp will suit your child: inclusionary (or mainstream) camps; camps for kids with a specific special need; or camps for kids with many kinds of special needs.
• Involve your child. If possible, ask your child about their preferences, goals, and things they’d like to try.
• Ask for recommendations: Reach out to other parents of children with visual impairments or special needs in person or online (in spaces like CVI Now on Facebook). You can contact local disability organizations, support groups, or local parenting publications for ideas. It’s also a good idea to check reviews on websites and social media.
• Consider programs designed for kids with visual impairments. The staff will typically have specialized training or experience working with children with VIs, as well as good student-counselor ratios. Try out the American Camp Association’s Find a Camp Tool or check out our list of resources below.
• Look for a commitment to inclusion. Does the website have an accessibility mission statement? Check the organization’s policies — is it committed to accommodating children with unique needs? 

“My daughter attends a camp for children with various needs. [It is] provided with her IEP, and they offer OT, PT, and speech. The majority of the staff are either special education teachers, support staff, or college students studying this field. We are very blessed to have this available in our community.”

– Rachelle, CVI parent

• Does your child need an aide? Determine which camps provide aides or ask if you can send an adult with your child for support. 
• Partner up. If you know another parent whose child has similar needs, you can host your own mini-camp or send them to the same program, especially if you need to pool time and resources to modify materials or send an aide.
• Explore safe and supportive environments. There are certain accreditations that show a program meets health and safety standards. For example, American Camp Association (ACA) Accreditation, state licensing, special needs certification, food and safety certification, background checks, and CPR / First Aid certification.
• Interview the program director. Be open about your child’s challenges and gifts, then gauge the leader’s response. This person sets the tone for the rest of the staff, so their answers will give you information about whether the program is a good fit. 

2. Communicate with organizers 

• Share your child’s medical and behavioral information. Once you have chosen an activity, provide the organizers with any necessary medical or behavioral information, as well as an overview of CVI as it pertains to your child. This could be in the form of a one-pager, a quick video, or a simple bulleted email.
  • Create a visual guide: Pictures and descriptions of your child’s needs, routines, and preferences. Get started with our Camper Introduction template here.
  • Make a video: Create a short video introducing your child and highlighting their strengths, challenges, and needs. Get started with our Camper Video Profile Instructions here.
• Talk about accommodations. Explain what your child needs to participate and ask what the program can do to ensure your child’s safety, access, and enjoyment at camp. Are they flexible about activities? Are they willing to problem-solve on the fly, or collaborate with you to make it a good experience?
• Offer to help with accommodations. What can you do to prepare? For example, you may ask for materials ahead of time and make necessary adaptations.
• Provide a list of do’s and don’ts: This can include things like dietary restrictions, sensory sensitivities, and communication needs. 
• Schedule a meeting: Arrange time with staff before the start of the program to discuss your child’s needs. As a bonus, this gives you a chance to get to know the people who will be responsible for your child each day.
• Communicate again. People are busy and, though they mean well, may forget some of the details. It’s never a problem to follow up with a summary of your child’s needs to reinforce earlier conversations.

3. Prepare your child

• Have a conversation about what to expect. Previewing gives your child a foundation for understanding the “who, what, when, where, and why” of the program. One way to accomplish this is through a social story, describing a typical day at camp and how your child can navigate it. Ask the camp for samples of the daily schedule and photos of the environment to use as the basis for the story.
• Tour the space prior to the first day. This will help orient your child to the environment, allowing them to explore during a time when it is less crowded and noisy. The tour may also be virtual if needed, for example, if your child is traveling to attend an overnight camp.

“My daughter just attended an adventure camp for kids with blindness and low vision. We prepared by looking at the camp website to see what it looked like, and what kind of activities they had. We also talked about how it would be at night (she is night blind)… We looked at maps to see where the camp was and what the weather would be like. We also had a Zoom meeting with one of the camp leaders so that she already knew who was going to pick her up from the airport and take her to the camp.”

– Tonny, CVI parent

• Ask for materials ahead of time and modify them as needed. Yes, this means extra work. But if the program relies on a lot of pre-packaged, inaccessible materials, it is critical for your child’s access. 

“My daughter attended a STEM camp and, though it was very hands-on, the camp relied on a workbook. Because the program was hosted at our school, the leader worked with the materials specialist to recreate the workbook according to my daughter’s visual needs. If they hadn’t offered this, I probably would have asked for a digital copy to adjust on an iPad. In hindsight, it would have been helpful to preview the activities by showing her objects that represented the images in the book, for example, a miniature rocket or a lever.” 

– Dan, CVI parent

• Model self-advocacy. Help your child find a way to communicate his or her needs. This Self-Advocacy Playbook, developed by Camp Abilities, Foreseeable Future Foundation, and students from the Utah School for the Deaf and Blind, is a practical resource. It outlines the four pillars of advocating for yourself — Knowledge of Self, Knowledge of Rights, Communication, and Leadership — and how to attain these skills. It includes a list of responses to potential objections to participation and a script template for persuasive self-advocacy.

“I typically just remind my daughter to advocate for herself if she needs assistance. [For example], if the lettering is too small for her to read, she will ask for it to be made larger or read to her. If she is confused or unfocused, she will say so. I tell her people do not know what you need unless you tell them.” 

– Rachelle, CVI parent

• Consult with an expert. Can you connect with someone who knows a lot about an activity and is willing to preview it for your child and/or the camp? You may also find online resources that would be beneficial to share with camp organizers, like these instructional videos on adapting sports for people with visual impairments from Camp Abilities. 

“We’re gearing up for new sports this summer — golf and swimming — and have enjoyed researching how they are accomplished for the visually impaired in the professional world… For golf, in particular, I was able to contact a blind golf champion, and he offered to do a Zoom call with our First Tee (pee wee golf) coach to get everyone off on the right foot.” 

–  Abby, CVI parent

Though you will find few programs already prepared to work with children with CVI, there are many ways to facilitate meaningful experiences that fulfill your child’s needs — and it’s well worth the effort.

Additional Camp RESOURCES AND OPPORTUNITIES

• Summer camp information for families of children with disabilities
• Outreach Short Courses (Massachusetts)
• Helen L. Diller Vacation Home for Blind Children (New Jersey)
• Envisioning Youth Empowerment Retreat (aka EYE Retreat) (North Carolina)
• Camp Dogwood for the Blind & Visually Impaired (North Carolina)
• Camp Abilities (National)

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