Programming Inclusion for Hidden Disabilities
By Kelli Anderson
Twenty-two years ago when we heard words like "ADA," "inclusion" or "disability," our attention toward and our solutions for those in the disabled community focused primarily on those with physical challenges. Since that time we have made strides toward making our facilities accessible and making accommodations to our programs when and where needed. In the past few years, however, our understanding of this community has broadened to include those we wouldn't ordinarily recognize at first glance as needing any special help or accommodation: those with hidden disabilities.
Learning how to successfully include those with hidden disabilities (those with social, emotional and cognitive challenges such as autism, ADHD or mood disorders) into our programs is a process many are still trying to navigate, but for those who are doing it well, it is making a life-changing difference to more than just the child with a disability. It's changing whole communities.
In fact, those recreational facilities that have embraced this can-do challenge report that positive effects are stellar. Typical kids begin to see their peers with special needs as just "kids" like themselves; they stop noticing the differences—the whole purpose of inclusion—and even become advocates for them not just within recreational programs, but in the halls of their schools and on the streets in their neighborhood.
Moreover, the very accommodations made to recreational programming that help make it successful for inclusion (like more visual cues, using whiteboards and more structure) turn out to be an improvement for the whole program. In short, when it is done right, inclusion benefits everyone.
For the staff at the City of Eugene Recreation Services in Eugene, Ore., who greeted 7-year-old Ethan and his stuffed chipmunk Alvin each morning this past summer, it was business as usual. But for this young boy with autism spectrum disorder and his mother, Laura Dahill, it was anything but usual. For Ethan, to end each day of summer camp with a smile on his face was incredible.
"I am very appreciative of the City of Eugene for making inclusion a priority," Dahill wrote in a thank you letter to the mayor of the city. "Because it makes its recreation programs accessible to all people in the community, regardless of abilities, my son is able to enjoy the same wonderful summer camp as his twin brother. It is wonderful to live in a city where programs and activities are already in place to accommodate the needs of a diverse population."
However, happy inclusion stories like Ethan's owe a great deal of their success to difficult beginnings. When Diane Bubel's 13-year-old son with autism wanted to participate in a summer program like her other children, the only program available was over an hour away. She decided there had to be a better way to give families like hers more choices and the chance to experience a life fully immersed in community.
What resulted was The National Inclusion Project, an organization that encourages and facilitates community inclusion. By using successful training models that are now widely used by YMCAs, JCCs, Boys and Girls Clubs of America and other recreational organizations, The Project is helping tens of thousands of children successfully experience recreation and positive relationships with their peers for the first time.
No Child Left Behind
Unfortunately, roadblocks remain—both imagined and real—including misinformation about inclusion that misleads many to believe that successful implementation is impossible, too difficult or maybe even harmful as a result of bad experiences when inclusion was attempted without proper training. Thankfully, with the help of special needs organizations, conferences, seminars, networking sites and some common sense, stories like Ethan's are demonstrating that the impossible is possible after all.
Contrary to what many might think, inclusion doesn't start with a budget, a facility overhaul, consultants or even staff training. It starts with a commitment to a vision that no child, regardless of ability, should be segregated or left behind.
"I think that the real roadblock for most people starts with an attitude that says, 'I can't do this; it's too hard,'" said Aron Hall, director of programs with The National Inclusion Project, "or an attitude that says, 'These kids need something different that my program can't provide, so we need a different, separate program.' You can change your facility to the most amazing ADA facility of all time, but if you don't have the right mindset first, that's only going to go so far."
In the past few years our understanding of the disabled community has broadened to include those we wouldn't ordinarily recognize at first glance as needing any special help or accommodation: those with hidden disabilities.
According to Hall, the mindset behind successful inclusion comes down to three things: the unwavering belief that every child can make a friend, every child can participate, and every child can be successful. Once that vision is in place, creativity and a willingness to think outside the box will naturally follow in an attempt to figure out how to help every child be successful because those in charge will not be satisfied with a scenario where a child is left standing apart.
The Jewish Community Center in St. Paul, Minn., attributes decades of inclusion success to the fact that a vision of inclusion is factored into every day-to-day decision made. "That's what happened in this building 27 years ago," explained Alyssa Golob, director of youth and family services. "It's about being really committed to the belief that any kid can be a part of what every 8-year-old does, and it's in the beginning of our mission statement. We're walking the talk, and we look at it in every committee, and all decisions are based on that mission."
Inclusion Includes All Staff
According to Golob, that kind of walking the talk only happens when you hire staff members, regardless of position or job title, who share in that vision as well. Hall agreed, adding that managers need to incorporate their inclusion philosophy within the interview questions so that when they hire, they hire those who share their vision, making it easier to equip them.
But that doesn't mean every staff person has to be a special needs expert. It means looking for a certain attitude. "I don't always hire people with special needs experience, but they have to be caring, patient and have a spark in the eye," said Heather Andersen, inclusion manager of the Fox Valley Special Recreation Association (FVSRA) in Aurora, Ill.
In fact, a misconception many facilities fall prey to is the belief that inclusion is only the responsibility of one or two experts or of a single department. Just as its name implies, inclusion is a mindset that must literally include every employee. "One common mistake is assuming that the expert, or whoever is assigned to coordinate inclusion services, can solve all the problems," said Carly Schmidt, CTRS, inclusion coordinator with the City of Eugene Recreation Services in Eugene, Ore. "It's important to have each service area have ownership of inclusion in their own programs and understand that a solution most often will come from a collaboration within the service area. The inclusion coordinator can ensure continued accountability, but each program area is mostly responsible for their own inclusion."
But experts most definitely do play an indispensible role, as does the training of all staff on a regular basis—and not just about the specifics of a disability, but about what it takes to create an environment where everyone can thrive. "We do a lot of training with our staff about what it means to create a welcoming environment in the camp groups," Golob said about the JCC's summer camps as one example, "and what it means for counselors who are employees, to be shadows because it is everyone's responsibility for all the children."
Staff also needs to be trained on a regular basis about the how-tos. "The first thing is vision, but the second thing is working with technique," Hall explained. "Techniques to battle those red flags are often just common sense. Treat others like you want to be treated. It boils down to kids with disabilities wanting to connect just like other kids. Helping them find peer relationships they can perform for and value. Those are the things that help them engage more and make better behavior choices. When we train, we don't focus on how to work with a disability, but how to work with people together."
As any one in the special needs industry will tell you, there is no one-size-fits-all in an approach to inclusion, and accommodations for success for each individual must be discovered one child at a time. As a result, accommodation doesn't always mean a shadow or buddy for a child is required for them to succeed. Success may be as simple as recognizing that they, along with their peers, need a moment to play before settling down for an after-school homework program. Or simply learning to avoid trigger topics they struggle to discuss.
For the families at the JCC in St. Paul, discovering those accommodations means bringing people to the table including parents, inclusion experts, occupational therapists and adaptive recreation professionals to name a few.
And because every state differs on the models they use for inclusion, some facilities will have inclusion staff at every site, while others will have one department that serves as a resource for all recreational facilities in their region. Regardless, training of all staff on a regular basis is still essential.
"I think that the most common roadblock is awareness and lack of education," Andersen said, admitting, "I know it's hard to train every full- and part-time staff."
However, Andersen also underscored the importance of regular group training on disabilities and sensitivity. In her organization, their goal is to do weekly updates for local park districts and she recommends using creative options like Googling a topic such as therapeutic recreation (TR) to find more resources or using YouTube and educational videos.
At the FVSRA, service staff receive two general inclusion trainings per year, one-on-one "buddies" get even more training, and the FVSRA step in to train new staff throughout the year as needed. In Eugene, Ore., training is a team approach, using a decentralized model where the inclusion manager coordinates and collaborates with supervisors to emphasize what training they want or to provide resources. Hiring a mentor or consultant from an agency is also a great way to take your inclusion awareness and practices to the next level.
Working closely with schools all year round and communicating with them to learn what strategies have worked in the classrooms for individual children, is a great way to transport success from one location to another.
Other Staff Resources
Experienced experts are also as close as your local schools, in which many who work in special education are eager to find work in the summer months and are ideal for summer camps and other summer programs. Working closely with schools all year round, however, and communicating with them to learn what strategies have worked in the classrooms for individual children, is a great way to transport success from one location to another.
"Consistency is so important with kids with their reward systems and behavior plans," Andersen explained. "As long as we have permission from parents, we love talking to teachers and hiring aids because they know the kids and they have the background. I only have to train them about our policies. We work very, very closely with the school system, and those park districts that do it, it works amazingly."
According to Andersen, the more communication with the child's entire team, the better everyone will be, citing the use of a notebook that is passed from a child's school assistant, to the park district staff each day through which information about the child's day is recorded to prepare everyone for an easy transition from one environment to the next.
Consistency & Continuity
Consistency in language is also key to creating an environment that includes everyone and singles out no one. "We need to use typical language so that no one feels different," Golob said. "We will ask kids, 'Hey, does anyone need to go for a walk? Josey, do you need a break?' because there are times everyone has an off day. Then when Max is feeling overwhelmed, we can say, 'Max, let's go for a walk,' and everyone has the same sense of attention and love from the leader in their life."
Continuity in hiring staff with shared values, who learn a shared language and continuity in offering inclusion practices that transition from the home or school environment to the recreational one, are key characteristics of inclusion programming that works.
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