Inclusion of children and youth with developmental disabilities I

This series of posts will feature, segment by segment, SOAR's report "Inclusion of children and youth with developmental disabilities in after-school, summer, and youth development programs." Today's is the first segment.

WHY INCLUSION?

As our communities work to break down barriers of access, bias, and de-facto segregation, we are finding more ways to identify which children and youth are getting left behind, and how to remedy this. We are increasingly talking about and acting on concerns that children and youth don’t have equal access to the kinds of experiences that help them succeed and thrive.

Inclusion, as defined for the purpose of this report, is the practice of creating and sustaining programs where children and youth with and without disabilities participate together as equals, and which approach their programming with intentionality, commitment, knowledge, and partnership. Advocates for inclusion see a social justice rationale, focusing on how children and youth deserve full access to participation, as well as support from a community that is aware inclusion goes beyond physical accessibility. As The After-School Corporation notes:

Inclusion is a practice and a belief that children with special needs should be able to fully participate, with their typically developing peers, in their school and community by engaging in age-appropriate activities. Inclusion goes beyond making space physically accessible to students with special needs and creates opportunities for meaningful participation for all students.[i]

This type of inclusion is becoming increasingly common. An analysis of inclusive 4-H programs explains:

Rather than offering special programs only for people with disabilities, the trend today is toward providing supports to increase inclusive opportunities within all programs open to the public. For most individuals, the elimination of physical and social barriers reduces the need for special programs. This inclusion, however, involves more than just placing people with disabilities into a group. It involves social interaction as well as physical integration. Providing support expresses an acceptance of a person and their abilities and helps the individual participate at his or her level of independence. Inclusion means altering the environment more than forcing the person with a disability to change.[ii]

Inclusion is a successful means of helping children and youth interact and succeed with their peers across lines of ability, often with impressive results. As the parent of a boy enrolled in a summer camp for children with and without intellectual disabilities noted, “[He] was on the verge of being banned from gym class because he was too competitive and got angry with the other kids. Since he’s come to camp his attitude has changed dramatically. He is so much more patient.”[iii] Inclusion also eliminates the isolation and pigeon-holing that can stem from segregated settings, as well as providing opportunities children and youth otherwise wouldn’t necessarily experience.[iv]

Inclusion is particularly important in out-of-school time programs because of the unique assets such programs provide, such as positive social/emotional development, a nurturing environment for strong friendships, creative opportunities, new experiences, chances to try new things and build skills, and connections with caring adults. These are some of the assets that children and youth with developmental disabilities are not getting as frequently as their peers without disabilities. However, studies show that inclusive out-of-school programs are especially helpful in helping children with and without disabilities interact socially with success, as compared to some school settings, where children and youth with disabilities are more likely to feel socially isolated.[v]

Some types of programs are more likely to practice inclusion than others, but the trend in most out-of-school-time programs shows that more are becoming inclusive or considering inclusion. Some fields, such as summer camping, have shown a gradual increase in inclusive rather than segregated programming.[vi] Still, inclusive opportunities for school-age children and older youth are significantly less prevalent than for their younger peers.[vii]

Inclusion is an ongoing process rather than an end result to be achieved.[viii] Families, programs, youth and communities work together on an ongoing basis to ensure programs are meeting needs and interests. Inclusion should be seamless and smooth, rather than clearly visible to all participants. As a result, inclusion will feel natural to all involved, which is a core value of the concept to begin with.


EMBRACING AN ATTITUDE OF INCLUSION

Inclusion means more than just getting the buy-in of staff; parents of children without disabilities must also be supported in understanding the benefits of inclusion. Fears, concerns, and bias are pervasive, and can be challenging for staff to counteract, especially if the staff themselves have only recently been trained in inclusive practices. New York’s TASC (The After-School Corporation) cautions that programs becoming inclusive can expect to work twice as hard to succeed at inclusion, due to such barriers.[ix]

Everyone has to be bought in for inclusion to succeed. Within an organization, collaborative, or local government, those holding the highest positions must support the concept of inclusion, just as the staff who work with the children and youth directly must also support the idea of inclusion. Those in leadership positions can show their commitment through actions such as attending trainings on inclusion with direct-service staff,[x] or adding staff with disabilities to the program and people with disabilities to the Board of Directors.[xi]
On all levels, from city government and large-scale collaboratives to families and direct program staff, partners and programs must foster an inclusive attitude. On a program level, this means a whole-child approach, where youth development, participation, creativity, and all other traditional components of a quality program come first. As The After-School Corporation (TASC) explains,

Focus on similarities, not differences; strengths, not weaknesses. As you develop your program, consider activities that are noncompetitive, allow all students to experience success, can be adjusted to suit the needs of individual students and allow students to progress at their own pace. Think about how your curriculum can reach everyone.[xii]

Staff can foster an attitude of inclusion among participants by focusing on cooperative activities, offering choices between activities, modeling respect, and coming up with creative roles to include children and youth who might otherwise be left out of or excessively challenged by an activity. While programs may not disclose a child’s disability to other participants without written permission for the parent or guardian,[xiii]

general conversations on ability and finding common ground are still possible even when such permission has not been granted.

While making a full commitment to inclusion might prove successful for some programs that currently work specifically with children with disabilities, other programs may be more successful building inclusion through “reverse mainstreaming.” This involves adding a few children without disabilities to the program at a time, often siblings, friends and allies of participants in the program. Such a shift may help a program adjust more smoothly.

There are resources available to help programs seeking to become more inclusive. Two of these are particularly useful:

The After-School Corporation (TASC)’s Including Students with Special Needs in After-School Programs (http://www.tascorp.org/content/document/detail/1450/)
Together We’re Better: A Practical Guide to Including Children of ALL Abilities in Out-of-School Time Programs (available from Kids Included Together’s website)

TYPES OF PROGRAMS
A wide variety of programs have successfully increased the extent to which they are inclusive of children and youth with disabilities, including developmental disabilities. Such programs include:

• Traditional before- and after-school programs
• Drop-in programs
• Summer overnight camps
• Summer day camps
• Service-learning programs
• Activities for older youth
• Youth leadership programs
• Sports, arts, and cultural activities
• Child care settings with a programmatic focus
• Other community programs for children and youth

This report addresses both existing programs seeking to become more inclusive and communities wishing to develop new inclusive programs from the ground up. Within the above fields, there are programs at all stages of inclusion.

[i] The After-School Corproration, “Including Students Wtih 2005
[ii] Stumpf, Mitzi, Henderson, Karla, Luken, Karen, Bialeschki, Deb, Casey, Mary II. “4-H Programs with a Focus on Including Youth with Disabilities.” Journal of Extension: Volume 40, Number 2, April, 2002
[iii] Siperstein, Gary N., Ph.D., Glick, Gary C., Harada, Coreen M., Bardon, Jennifer Norins, and Parker, Robin C. “Camp Shriver: A model for Including Children with Intellectual Disabilities in Summer Camp.” Camping Magazine, July 2007.
[iv] Mulvihill, Beverly A. PhD, Cotton, Janice N. PhD, Gyaben, Susan L. MPH. “Best practices for inclusive child and adolescent out-of-school care: a review of the literature.” Family & Community Health: Volume 27 (1) January/February/March 2004 p. 52-64.
[v] Siperstein et al., 2007
[vi] Siperstein et al., 2007
[vii] Mulvihill et al., 2004
[viii] Dunlap et al., 2004
[ix] The After-School Corproration, 2005
[x] Dunlap et al., 2004
[xi] Workshop notes from Erica Newman. Workshop “Respectful Accommodations” (Mary Shea) After the Bell Rings: Developing your Kit for Including All Children. 3rd Annual National Conference on Inclusion. Kids Included Together. 4/19/07.
[xii] The After-School Corporation, 2005
[xiii] Dunlap et al., 2004