“There’s nothing here for my nephew.” Paulette Foster, co-founder of Education Rights Network slid the brightly colored brochure filled with summer program descriptions back across the desk.

Foster and co-founder Pamela Harbin, like many families of children with disabilities, are all too familiar with the ways Out of School Time learning opportunities exclude children in ways that are both subtle and overt, related to accessibility of space, method of instruction, and curriculum content. Harbin is no stranger to the phone calls to come retrieve a child whose behaviors related to his disabilities extend beyond the reach of OST (out-of-school) staff training, familiarity, or compassion. In fact, she runs parent hotlines and almost daily, fields calls from families whose children have been kicked out of childcare, summer school, and camps. Quite simply, unless an OST experience is specifically marketed as a program for children with disabilities, they find they just aren’t included in opportunities. Harbin says, “Parents tell me ‘I’m not even going to try because I know my kid has been kicked out of XYZ.’ We’ve wound up with segregated programs, because integration has been difficult.” In practice, these organizations don’t have the necessary staff, training, or capacity, and they turn kids away.

Statewide, data shows 16% of children between 1st and 12th grade are diagnosed with a disability— that adds up to more than 262,000 children. Another 53,000 preschoolers statewide are identified as having a disability. That’s a lot of kids, and a stark reminder that disability is everywhere, whether it’s visible or not. To further compound the situation, OST programs operate under different standards and regulations than public schools— IDEA, FAPE, and other federal legislation does not extend to out-of-school providers.

Harbin approached organizations funding out of school learning opportunities and asked them to change their RFP to ask how these programs include every child. “These programs are getting all this funding [for teaching skills for high-demand occupations] and as parents, we’re all having to call and beg for accommodations,” Harbin says. She wants to see conscious, deliberate language from planning to hiring to program marketing materials indicating “we accept all kids and have the capability and capacity, trained staff to accept kids of all abilities.”

Disability is Everywhere

Dr. Temple Lovelace, a member of the education faculty at Duquesne University, says “disability is a part of the human experience and ableism (discrimination that favors able-bodied individuals) is just as dangerous as racism, classism, and sexism.” As a young scholar, Lovelace saw that black and Latino boys and girls were disproportionately over-identified as having emotional or behavioral disorders and mild-to-moderate intellectual disabilities, but under-identified in areas like “gifted” enrichment or autism spectrum disorders.

Lovelace says it’s important to understand that complying with the Americans with Disabilities Act means more than just installing access ramps and motion-sensors for light switches. But even that would be a start. “At the basic level, the ability for disabled individuals to physically access programming is a huge problem in our region,” she says, noting that while it’s great that many OST opportunities are offered in a variety of settings, many local theaters, churches, or parks might not have been able to keep up with ADA compliance like school buildings do.

Lovelace would like to see a broader conversation on ableism, because this affects a program’s mission and values, relating to hiring practices for program staff, choice of curriculum, and method of instruction. She says, “When we look at OST and talk about remaking learning, our goal is to do something different than or in addition to what children are doing in public school. Well, public schools don’t often address the needs of disabled students very well.” Lovelace teaches future special education educators, and sees how complicated it can be to help these dedicated teachers learn about categories of disability. “We need to provide a forum for OST professionals to learn about disability.”

Who Is Succeeding at Inclusion?

Lovelace spent many years working with the Center of Life program in Hazelwood, a space she says has always been inclusive; “there was nowhere else for us to send children. We were together for 4 hours no matter what.” Joy Cannon, who currently works as program director, says that inclusion is a deliberate practice at Center of Life. “[Inclusion] comes from preparing our staff. We meet one on one with the family of any student with a disability to find out specifically what their needs are.”

Center of Life employs a family and outreach specialist. Their philosophy is that if students are having difficulty with Center of Life programming, “we have meetings to engage those families and find out what needs aren’t being met for that child, so they feel supported. It’s never as simple as ‘that child just misbehaves.’” This approach becomes especially important considering the intersection of race and disability. Cannon says, “It’s challenging to find quality OST programming when you’re a minority or have a disability. If you have a combination of those things, the challenges increase tenfold when looking for programming that’s suitable, and culturally competent.”

Another organization actively centering inclusion is The Friendship Circle in Squirrel Hill. “We want to be a place where individuals of all diverse abilities are able to come and they are a part of something,” says Julia Averbach, member coordinator. Averbach says people come through the door fully able to just be themselves, which allows them to grow and develop in other areas of their lives. “You don’t have to change to be part of us,” Averbach says. “Friendship Circle will change to be part of you.”

Inclusion Effects

Averbach says all participants in Friendship Circle leave the space with a better understanding of what it means to be part of a diverse community. In a world full of staircases, where people with disabilities have not been considered, inclusive opportunities can have a profound ripple effect on society. Harbin notes that able-bodied and neurotypical people create these barriers around us and it’s our job to remove them.

As an example, Harbin notes that when she leads meetings for the Education Rights Network, she hires and advertises the presence of an ASL interpreter. “I don’t know if anyone will show up who needs this service,” she says, “and that’s $200 I might have wasted, but if I don’t do this, I know for sure nobody will turn up who is hearing impaired.”

Cannon feels the most important thing Center of Life does is provide regular professional development for her staff. “We have a minimum of 3 in-service weeks per year,” she says, covering topics that meet needs as they arise. For example, she noticed a need for Youth Mental Health First Aid and Center of Life staff took the training offered by Allegheny Partners for Out-of-school Time (APOST).

Kathryn Vargas of APOST is encouraged to note that they’ve offered this particular training multiple times and have reached capacity for each session. “I feel this is an example that demonstrates that OST partners both need and want this information so they can best meet the needs of all students.” APOST also offers professional development for members on subjects like “Creating Positive Learning Environments for Students with IEPs,” which has also reached capacity. Vargas says the demand for training and building program quality for all “highlights an area of learning and growth that providers want to improve in their practice.”

These trainings fit into Lovelace’s dream for the future. She’s inspired by the special education collaborative in Philadelphia that regularly brings together teachers, OST providers, and academics to discuss access. Lovelace dreams of a series for OST providers in Pittsburgh to collaborate about physical space manipulations, instructional adaptations. “A few tweaks can make a huge difference in who can access a program,” she says. “I would love to bring people together for an intersectional special education collaborative.”