Inclusion of children and youth with developmental disabilities II

This is part 2 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. The sign at the left is not what we might call inclusive.



...Continued from July 3rd:


CHANGING POLICY

Programs and communities can articulate their commitments to inclusion through developing and following written policies. At a program level, organizations can include in their mission, values or policy statements about how and why they are inclusive of children with disabilities, (as well as other children and youth who are often disenfranchised). At a community level, local governments, community collaboratives, and networks can make written commitments to inclusion, also focusing on why they value inclusion and what they can do to increase it.

Cities can commit to inclusion by providing support, training, and funding for all programs to become inclusive, just as communities have committed to other large efforts such as accrediting child care centers or ending homelessness. Some communities are already starting to look at this option. In its London-based report Listening to Parents of Disabled Children About Childcare, funded by the Department for Children, Schools & Families and the London Development Agency, the National Childcare Campaign Daycare Trust recommends a goal of “ensuring that every childcare setting in London is disability-friendly.”[i] Such recommendations can expand beyond the childcare world to after-school as well; communities can set goals to help as many local programs as possible become inclusive.


APPROACHES: CHALLENGE-BASED AND ASSET-BASED

· Challenge-based Approach: How to meet basic needs, manage risk, and avoid problems. Focus on safety, barriers, cost, bias, and needs that seem difficult to meet.

In discussions on inclusion of children and youth with developmental disabilities, it is common to hear about the challenges involved. Parents and caregivers face difficulties finding programs for their children. Advocates work hard to raise awareness and increase funding for inclusive programs. Programs face hurdles as they develop, expand or change.

In programming in particular, the discussion often comes down to overcoming barriers. How will we prevent this child from getting hurt? From feeling isolated? How can we afford more staff? How will we make activities physically accessible? How will we make them understandable to this child? How do we manage behavior issues? Challenges stem from funding, liability issues, safety, old ways of doing things, and difficulty changing attitudes and expectations. Further, programs that are marketed as “inclusive” may not be as popular among families whose children do not have disabilities; there may be an assumption that “inclusive” is code for “primarily or exclusively for children with special needs” or that children and youth without disabilities will not be prioritized. Additionally, such programs face pervasive fear-driven bias against those with disabilities that impacts the willingness of families to send children without disabilities to such programs. Changing attitudes is a long-term, systemic-level project that can feel daunting.

Funding in particular stands out as the largest issue for many programs. Inclusion and support of children with disabilities is very realistically expensive, in terms of staffing, facility changes, program changes, just to name a few areas.

These are all genuine difficulties and must be addressed frankly. Yet, a challenge-based approach misses the positive reasons we create youth development programming in the first place. All children and youth deserve to have places to go outside of school and home where they experience friendship, creativity, leadership, learning, caring adults, interesting activities, and nurturing. By adding an asset-based approach to balance out our challenge-based approach, we keep in mind why we’re creating inclusive programming in the first place. We do this because the programming itself is valuable.

· Asset-based Approach: How to ensure children and youth are getting the beneficial assets, experiences, and opportunities they deserve. Focus on quality, youth involvement, and positive experience.

An asset-based approach reflects the values of inclusion, namely, that all children and youth benefit from positive experiences, and that we benefit as a society from including them. Focusing on assets reminds us that inclusion is beneficial for children both with and without disabilities. Inclusive programs highlight similarities among children and youth across lines of ability.[ii]

Both challenge-based and asset-based approaches are necessary. In the positive light of assets, glossing over challenges can put participants at risk of negative or unsafe experiences. A balance between challenge-based and asset-based approaches sets communities up to succeed.


PARTNERSHIPS AND COLLABORATIONS

Collaboration is useful at all levels of programming, particularly curriculum design and program development. Some groups developing model programs, such as the Intentionally Inclusive 4-H Club Program model of North Carolina, include collaborative partnership from the outset.[iii] Collaboration on an ongoing basis also helps ensure successful programming. At all stages, from curriculum development to program maintenance to sharing of models, partners might include:

• Youth with disabilities (and youth without disabilities)
• Parents and caregivers
• Adults with a range of developmental disabilities who can provide a personal perspective about how programs could have served them better as youth
• Representatives from youth programs, including direct service staff
• Students and specialists from universities working in relevant areas
• Health professionals and specialists
• Home care providers
• Community advocates (individuals or organizations)
• Schools
• Those providing resources to people with developmental disabilities (existing specialized programs, transportation services, educators, etc)
• Funders (foundations and/or corporate sponsors)
• Existing programs
• Facilities for programming (camps, universities, parks, etc)

Including a wide range of stakeholders, particularly the youth and families who will be affected, is triply beneficial. First, programming developed with insights, cautions, and ideas of people coming from each of those perspectives will avoid the pitfalls that might seem obvious to one but not the other. Second, including voices such as youth, families and staff in development sends a powerful message internally and externally that the program in question empowers and comes from the community served. Third, collaboration can be beneficial for outreach and marketing of the program since those developing the program will feel ownership of it, and want it to succeed. Families can spread the word to other families; state professionals can publicize the program within their networks.

YOUTH AND FAMILY INVOLVEMENT

As often-disenfranchised members of society, youth need opportunities to advocate for themselves and other youth, to make decisions about the things that impact them, and to have a voice where usually only adults are heard. These opportunities are part of positive youth development experiences for all youth. Youth with disabilities face a double-whammy of ageism and ableism; not only do they experience the disenfranchisement of being young, they also experience a society that overlooks their ability to think, contribute ideas, and participate in decision making because of their disabilities. This is especially true for youth whose disabilities affect language and communication.

Consequently, it is crucial to include children and youth in program development as well as in determining how best to include them in a given program. Certainly different youth will have different extents to which they can contribute, but all can contribute in a way that is meaningful and realistic for their individual abilities.

Further, youth and families know their own situations, needs, preferences and abilities better than anyone else. Programs will be more likely to succeed at inclusion when knowledge from children, youth, and families is incorporated at all levels.

Older youth and young adults can provide particularly useful perspectives, being able to reflect on what would have made programs better for them when they were young.

Programs should bear in mind that parents and caregivers may have experienced setbacks and challenges when trying to involve their children in programs in the past. Having faced rejection from programs, or because of fears that their children will not be accepted, some parents and caregivers will not inform a program of their child’s disability, or will wait until a late opportunity to do so. Proactively creating a safe, welcoming environment will help parents and caregivers feel comfortable and welcome. Involving parents and caregivers as partners in the program will support and empower them while programs benefit from their knowledge. Some of the resources at the end of this report offer suggestions and scenarios to help programs work with parents and caregivers.

Family support and involvement is an ongoing process. As with any parents or caregivers, programs should communicate successes as well as challenges.[iv] Families will appreciate knowing the ways in which their children are growing and thriving. Just as children and youth can connect with peers through integrated programs, families can connect to other families with children with disabilities as well as with typically-developing children.[v]
When families have the option to be involved as volunteers or assistants, programs will get better results because the family members have become true stakeholders in the process. With work and life schedules, this is not always realistic for all families, and assorted types of optional volunteer and engagement opportunities should be available to match the interests, skills, and time constraints of the families involved.

[i] National Childcare Campaign Daycare Trust. “Listening to parents of disabled children about childcare.” Department for Children, Schools & Families and the London Development Agency, 2007.
[ii] Siperstein et al., 2007
[iii] Stumpf et al., 2002
[iv] 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.
[v] Mulvihill et al., 2004

Thanks to jbcurio for the flickr Creative Commons photo.