Inclusion of children and youth with developmental disabilities III

This is part 3, the final piece, in an ongoing series featuring SOAR's paper on including children and youth with developmental disabilities in after-school and youth development programs. Inclusion means creating or sustaining programs for children and youth to interact together, across all lines of ability and development. This piece continues where part 2 left off.

KNOWLEDGEABLE STAFF, PROPER RATIOS

Inclusive programs benefit from hiring staff with experience, knowledge and skills specific to supporting children and youth with developmental disabilities. Aside from interacting with participants and program design, such staff members can be helpful in training other staff, in helping the program maintain its ongoing goals of inclusion, and in evaluating areas with room for improvement. To find skilled and knowledgeable staff, programs can build partnerships with other entities. They might look to universities, particularly programs such as special education, nursing, social work, physical therapy, speech therapy, occupational therapy, or related fields. They might partner with existing organizations focused on children and youth with disabilities, such as Special Olympics. Summer programs may be able to recruit teachers from special education classrooms, as might other programs that meet outside of school time. Staff members who themselves have disabilities or family members/loved ones with disabilities may provide a perspective about the needs of participants, while being role models and mentors.

Programs must also have adequate resources to help these staff succeed. This includes adequate numbers of staff, opportunities to train other staff members, program supplies, flexibility, and a willingness to adjust programming as needs and creative ideas arise. As with all programs for children and youth, proper ratios are crucial for maintaining a safe environment in an inclusive program. Some children and youth will need one-on-one attention whereas others will simply need staff to be aware of what helps them thrive and succeed. On a case-by-case basis, programs may communicate with each participant’s family to ensure ratios are appropriate.

Staff retention is crucial to success. Support and training are expensive but necessary to helping staff succeed. By setting aside funds, policies, and other priorities for staff support, programs will retain talented, quality staff. Similarly, foundations seeking to support inclusive programs can include or encourage funds to be spent on sufficiently hiring, training, compensating and retaining staff.


TRAINING

Inclusive programming is beneficial for staff without prior experience in this area. Training and working with all participants raises staff awareness and expectations for how children and youth can work together and thrive when in a supportive, well-structured environment.

Not all staff in a program will have expertise in supporting children and youth with developmental disabilities, and may know more about one disability than another. Training is essential, and also provides an opportunity to increase the extent to which youth workers and after-school staff in the field are knowledgeable about these issues. Programs should provide training both before staff are working with participants and on an ongoing basis. Training should include accurate, cutting-edge, respectful information, answer challenging questions, and leave staff prepared to succeed. Training should involve everyone in the process of increasing inclusion.

Training for direct program staff might include:

· Working with children and youth with developmental disabilities
· Fostering cooperation and friendship-building between participants across lines of ability
· Activity ideas
· Scenarios and role-playing
· Respectful behavior management tools
· Opportunities for staff to create or share ideas
· Developmental disabilities/health knowledge/variety of disabilities
· Being flexible/partnering with youth/family on their specific needs
· Safety and risk management
· Effective interaction
· Specific skills related to the program
· Ongoing training, increasingly advanced
· Articles and written material, visual tools, interactive opportunities and other means for meeting the varied learning styles of staff

Training for management staff might include:

· Advocacy for inclusion
· Communication with families of children with and without disabilities
· Supporting staff
· Program visioning and design
· ADA and legal issues
· Determining proper ratios
· Attending trainings intended for direct program staff to increase knowledge and show commitment

Training for the community might include:

• Sharing a successful program model and helping other programs create their own
• Presenting the benefits of inclusion
• Overcoming challenges the program has successfully faced
• Creative program ideas

Programs benefit both from one-time training opportunities and from ongoing consultation, support, and technical assistance.

[i] Partnerships with local experts can help programs succeed.


CREATIVE, FLEXIBLE EXPANSION OF PROGRAMMING

At the core of inclusion, programs need to adjust existing programming or determine which programming is already inclusive. Flexibility, creativity, clarity and communication are all key to inclusion, since there is no one formula that will be suitable for every participant, even with a particular disability. A study of best practices in inclusion lists the three core areas programs need to adapt as: physical environment, activities and games, and time adjustment.[ii] Such adjustment presents opportunities to transform activities or add new ones, determine new ways to manage activity timing and transitions, and create a physical space suitable for all participants. To succeed in programs, children need to understand the rules, feel respected, choose from options they enjoy, and experience the communication methods that work best for them.[iii]

Developmental disabilities encompass a wide range of categories, including autism, Down syndrome, Asperger’s syndrome and others. Children and youth also experience behavioral disorders, emotional disorders, learning disabilities, language limitations, physical disabilities, and health issues.[iv] Within each of these categories, individual people have different abilities and challenges. There will be no one solution or practice that supports every youth, even within a particular developmental disability. Programs must be creative on an ongoing basis, share ideas, and try new things with every individual they serve.

Staff should be trained in effective models for engaging participants in many ways at once, such as multiple senses, interests, and styles of intelligence. Some examples of such methods include the Center for Urban Education’s Framework for Effective Instruction, and Dr. Martin Gardner’s Theory of Multiple Intelligences.

Participants learning to build friendships and feel successful in an inclusive program will benefit from non-competitive activities, programming that allows for different paces and learning styles, engages multiple senses, and includes smooth transitions between activities.[v] Additionally, programs will learn from participants how best to support and include them by building relationships with them and their families.

Program design affords an opportunity to use creativity to manage behavior issues. By involving participants in program design and in the definitions and consequences of rule-breaking, children and youth will have a better understanding of, and more investment in their program and its rules. There are numerous strategies for supporting participants through behavioral challenges in the resources listed at the end of this document. These include peer mediation, social skills training, attention for positive behavior, pre-determined cues for concerns about behavior, and smooth transitions between activities to help participants stay engaged.

In practice, there are countless tips to helping various children and youth succeed at activities. Staff can assist children and youth in physical activities they may not be able to do in the same way as some of their peers. Visual cues can help some children and youth when giving directions for an activity. For many more ideas, programs can turn to detailed, practical guides to supporting the needs of children and youth with a range of specific disabilities. For one such guide, see Together We’re Better: A Practical Guide to Including Children of ALL Abilities in Out-of-School Time Programs at the end of this report.


MARKETING AND OUTREACH

With a societal mindset habituated to the idea that there are “mainstream programs” and there are “special-needs programs,” inclusive programs must pay careful attention to outreach. Such programs need to reach families looking for programming for children with specific developmental disabilities as well as families looking for programming for children without disabilities (or for multiple children). To ensure all families feel the program is relevant, safe, and interesting, all families must be kept in mind during outreach and marketing.

Families whose children have special needs may be used to thinking that their children are not welcome in most programs, based on past experiences, and may need to hear specifically that a program is becoming inclusive.[vi] Families can be reached through schools, including special education classrooms, as well as through PTAs, teachers, principals, libraries, health and social service professionals, brochures, flyers, websites, and any other means traditionally used to reach children and youth not already participating in quality programs.

Materials that put the child first are crucial. This is for two reasons. First, paralleling inclusive or “people first” language (e.g. “child who has a disability” rather than “disabled child”), marketing materials should reflect our values of focusing on children themselves rather than their abilities or disabilities. Second, inclusive programs must take care not to alienate any families, including those whose children don’t have disabilities. Marketing materials should focus on the activities, benefits, staff, values, and goals of a program. This information should include statements on inclusion at several points, and use language that makes it clear activities will be suited to participants with multiple learning styles and abilities. Pictures can also send inclusive messages.

When targeting families of children and youth with developmental disabilities, programs may use additional materials, such as a letter about why and how the program is inclusive. A letter may include Q&A for families (including some questions from parents whose children don’t have disabilities), a value statement about inclusion, and stories of past participants who have had positive experiences. Such materials can be helpful to families who are wary from having their child rejected from programs in the past, or who have never placed their child in an inclusive program.

Shared, centralized outreach and visibility benefits all programs. Ideally, a community should have a centralized resource (website, phone number, directory, etc) listing inclusive programs in the area. This allows youth and families to have a choice, and keeps programs truly inclusive by avoiding driving the majority into one program.


ASSESSMENT

Programs and communities can expand their existing evaluation and assessment tools to reflect whether inclusion is happening successfully[vii] and take additional steps to see if inclusion is working. Such steps may include:

Program directors can keep track of whether children and youth with disabilities stay in a given program and if they return for future sessions. It is also worth evaluating whether families are referring other families, and how frequently.

Families can complete anonymous surveys at enrollment and completion, participate in focus groups, put notes into a comment box, and give feedback on an ongoing basis.

Staff should be asked for feedback about whether the program is succeeding and helping them do their jobs.

Programs can conduct pre- and post- surveys of participants to gauge whether participants have made significant friendships across lines of ability, increased skill in core program areas (sports, arts, etc), and had a positive experience with the program.

[viii] Self-evaluation also helps participants reflect on their own experiences and demonstrate awareness of their progress, both of which are key youth development principles.

Programs can assess whether they are continuing to collaborate successfully.

Programs and communities can return to lists of goals they set when deciding to become more inclusive, and evaluate whether they have met these goals.

Consultants may be hired to determine if the space, environment, programming, and staffing are appropriate for all participants.

For more formal evaluation, programs and communities can partner with universities to conduct an in-depth study of whether inclusion is working.

SHARE KNOWLEDGE BETWEEN PROGRAMS

Inclusion is about strengthening individual programs and about creating systemic-level change. On a community level, we can increase conversations about inclusion and help multiple programs at once make their programs appropriate for children of a variety of abilities, including developmental disabilities. Programs can help this happen by sharing existing knowledge and successful models, both locally and nationally. For more ideas, see the Training section of this document.


FUNDING/ROLE OF FUNDERS

Funders also play a key role in increasing inclusive practices. To create, maintain, and increase awareness of programs that are inclusive involves a great deal of steps and changes. Some of these require little to no cost, while others can be quite expensive, such as particularly the hiring of additional staff members, training staff in inclusion, or acquiring or modifying program equipment. Funding concerns can be prohibitive for programs interested in expanding their inclusivity.

While some funders prefer focusing their efforts on one program at a time, or must do so due to financial limitations, funding entities should be aware that there is a benefit in multiple inclusive programs in a community developing simultaneously. There are countless underserved children and youth with a range of developmental disabilities in any community whose parents wish to find inclusive programs. When multiple programs develop and outreach at once, families have choices and programs stay truly inclusive.



NEXT STEPS

For programs, collaboratives or communities looking newly to increase inclusion of children and youth with disabilities, the information in this report may be a starting place. A number of the resources listed in the endnotes will provide detailed ideas for inclusion, such as checklists for programs looking to become inclusive, case studies of existing programs or models, evaluation procedures, DVDs , books, and more.
Within King County and other communities, there are myriad individuals at all levels who have knowledge and ideas about increasing inclusion, and these voices should be heard. These include direct service staff who have experience working with children and youth who have developmental disabilities, youth and families themselves, program directors, health professionals, and staff of programs designed specifically for children and youth with special needs. These experts, as well as representatives from the sources cited in this study, will have additional wisdom and insights.

By building collaboratives within and between programs, some of the challenges detailed here will lessen. Programs may feel less daunted to take on the challenges of inclusion because of outside support. Funders may understand the needs and rationale behind inclusion, and support it as a priority. Programs with strong ideas and models in the community may share what they know with the end goal of improving all programs. All entities can continue building from one another’s knowledge toward a shared vision of inclusion.



BIBLIOGRAPHY AND FURTHER RESOURCES

The After-School Corporation: www.tascorp.org
Child Care Plus: http://ruralinstitute.umt.edu/childcareplus
Circle of Inclusion (early childhood): http://www.circleofinclusion.org/
Kids Included Together: http://www.kitonline.org
Multiple Intelligences: http://www.ldpride.net/learningstyles.MI.htm
National Conference on Inclusion: www.kitconference.org/


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

After the Bell Rings: Developing your Kit for Including All Children. 3rd Annual National Conference on Inclusion. Kids Included Together. 4/19/07.

“The Americans with Disabilities Act (ADA): A new Way of Thinking: Title III.” Child Care Law Center, 2002.

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.

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.

Harper-Whalen, Susan Ed.M., Morris, Sandra L., B.A. “Child Care Plus Curriculum on Inclusion: Facilitator’s Guide.” Child Care Plus. Missoula: The University of Montana, 2000.

National Childcare Campaign Daycare Trust. “Listening to parents of disabled children about childcare.” Department for Children, Schools & Families and the London Development Agency, 2007.

Dunlap, Torrie, BA; Shea, Mary, OTR, MPH. Together We’re Better: A Practical Guide to Including Children of ALL Abilities in Out-of-School Time Programs. San Diego: Kids Included Together, 2004



This report was completed in partnership with the King County Developmental Disabilities Division and with funding support from United Way of King County, the King County Children and Families Commission and the City of Seattle Human Services Department.

[i] Mulvihill et al., 2004
[ii] Mulvihill et al., 2004
[iii] The After-School Corproration, 2005
[iv] Dunlap et al., 2004
[v] The After-School Corproration, 2005
[vi] The After-School Corproration, 2005
[vii] Dunlap et al., 2004
[viii] Siperstein et al., 2007

Thanks to kthypryn for the flickr Creative Commons photo