Support and Empower Families of Children With Disabilities

By Van Haren, Barbara Fiedler, Craig R

Keywords: family support; IEP collaboration; family empowerment; advocacy; special education Special education professionals can play a critical role in enhancing the quality of life not only for a child with a disability but also for that child’s entire family. To realize this beneficial impact on the child’s family, professionals must operate with the following assumptions (Fiedler, 2000). First, special education professionals must acknowledge that they have a responsibility to work with and support the child’s family, because a child who is at risk places a family at risk. second, professionals must value collaborative relationships with families as the best vehicle for their own professional growth and development and for supporting children with disabilities. Finally, professionals must strive to make families less dependent on their advice and services through family empowerment strategies.

The embodiment of these professional assumptions can be demonstrated by various family-centered support and family empowerment strategies. Family-centered support services have been defined as “those practices that (a) include families in decision- making, planning, assessment, and service delivery at family, agency, and systems levels; (b) develop services for the whole family and not just the child; (c) are guided by families’ priorities for goals and services; and (d) offer and respect families’ choices regarding the level of their participation” (Murphy, Lee, Turnbull, & Turbiville, 1995, p. 25). Empowerment principles promote family strength, competence, and decision making. Empowered families strive for control over their lives and take action to get what they want and need (Turnbull, Turnbull, Erwin, & Soodak, 2006). The following strategies and suggestions can serve special education professionals in their attempts to support and empower families of children with disabilities.

Family Support

1 Display empathy for families. Some special education professionals approach families from a judgmental perspective critical of family actions or lifestyles that conflict with their own values or lifestyle choices. Effective family support must be built upon a foundation of empathy, that is, understanding and compassion for a family’s situation. Without empathy for families, professionals will lack the motivation to engage in family support and empowerment activities.

2 Individualize family participation. Although active family participation is beneficial to a child’s educational progress, professionals must be careful to recognize that more family educational participation is not necessarily better for the family as a unit. Due to the demands of simply being a parent of a child with a disability, many parents are unable or unwilling to serve as their child’s teacher, therapist, or case manager in following school recommendations for “active participation” with the school program. A supportive professional approach with families would assist them in identifying a level of educational participation that is realistic, given their time and energy resources.

3 Recognize families as experts and build on family strengths. On a regular basis, special education professionals must step away from their “expert’s role” and actively seek to learn from families by acknowledging that families are experts when it comes to their child. When professionals recognize family expertise, fami lies are supported, their functioning is enhanced, and family strengths begin to emerge. Family strengths can be any characteristic that contributes to a family’s sense of well-being or balances individual needs with the needs of the entire family. For example, one family’s sense of humor became a principal coping mechanism for the stress associated with raising a son with multiple disabilities.

4 Value and support family decision making. In developing educational services for children with disabilities, disagreements between fami lies and special education professionals will sometimes occur. In those instances, support is offered when professionals suspend their own opinions and attempt to reflect on the issue from the family’s perspective. If the family’s perspective and decision is not clearly contrary to the child’s best interests, whenever possible, professionals should attempt to abide by the family’s decision and thus promote family selfdetermination.

5 Be a professional ally of families. Families feel tangible support when special education professionals act as allies. Professionals can communicate this ally perspective in a variety of ways: by demonstrating an understanding of the child’s uniqueness and individualized needs, showing a willingness to listen to and respect family concerns, being actively involved in professional organizations devoted to protecting rights and improving services for individuals with disabilities, and being willing to express concerns to administrators when families’ and special education professionals’ educational services are perceived as inappropriate or inadequate.

6 Engage families in open communication. Pugach and Johnson (2002) identified communication as the cornerstone of any collaborative partnership. Communication between families and school professionals, as well as among family members, provides an open, supportive environment and ultimately enhances educational involvement. With today’s technological advances, communication tools have increased in availability and accessibility. Examples to engage in continual dialogue with families include communication via e-mail, teleconferences, cell phones, and pagers. More traditional examples include face-to-face conferencing, telephone calls, handbooks, and newsletters.

7 Enhance family access. Families are more apt to feel supported in an educational environment that is flexible, responsive to their needs, and readily accessible to them. For example, the concept of the neighborhood school-the school the child would be educated in if the child did not have a disability-has long been encouraged as a means for the delivery of special education services. One of the key advantages of the neighborhood school for families is accessibility to educational services. If the child with a disability is placed in the neighborhood school, family members can attend parentteacher conferences, open houses, and other school activities at the same site for the child with a disability as for other children in the family. It also allows children with disabilities to establish relationships with the same individuals they will come in contact with throughout the community. Another example of enhancing educational access is providing a flexible contractual workday for school professionals to be available to meet with families at more convenient times.

8 Offer family networking. Support for families can come from a number of avenues. A critical support system can exist between families with common ground. Family connections can result in very transformational experiences and longlasting relationships. seeking new information, asking questions, and simply soliciting support can be significantly more comfortable with a peer than with school professionals. Schools should offer parents networking opportunities or a list of potential parental contacts as a resource and support system for those having new experiences in the special education system. For example, many communities have parent-to-parent programs. In these programs, one-to-one matches are made between a trained veteran parent and a referred parent who is experiencing special education or related issues for the first time.

9 Extend support systems. Vital members of the family unit include siblings and other extended family members. Often, caregivers include siblings, grandparents, aunts, uncles, and other extended family members or close friends. It is critical that schools open their doors and provide a welcoming atmosphere to all those involved in a child’s care. It is also imperative to provide support to these family members. One example of this is Sib Shop, a unique learning and recreational opportunity for brothers and sisters of individuals with disabilities (http:// www.siblingsupport.org/about/sibshops)

10 Embrace and celebrate families’ successes. It is critical for special education professionals to recognize the successes experienced by fami lies as they support their child with a disability, regardless of how small the successes may seem. Family members’ efforts and ideas should be appreciated and applauded and, thus, serve as a bridge for future success.

Family Empowerment

11 Enhance families’ sense of self-efficacy. Turnbull, Turnbull, Erwin, and Soodak (2006) proposed an empowerment model that views families as empowered when they possess a high degree of motivation and have sufficient knowledge and skills. Families are highly motivated when they believe in their own capabilities to solve their problems. This is a sense of selfefficacy. Anytime a special education professional provides a family with information, knowledge, or a skill that can address a current problem, the family’s sense of self-efficacy is fostered. For example, one special education professional showed a parent how to incorporate letter recognition into the family’s daily routine with their first- grade son, who was struggling with beginning reading skills. When the family started to see marked improvement in their son’s reading ability over the course of a year, their confidence rose and they became more motivated to tackle other problems. 12 Model effective problem solving for families. Effective problem solving is an essential empowerment skill. Empowered families possess the ability to execute a plan of action to resolve problems or barriers to meeting their child’s goals or needs. Special education professionals can teach families effective problemsolving steps and look for every opportunity to model those steps in real-life situations with families. The problem-solving process involves the following steps: (a) defining the problem, (b) generating possible solutions, (c) choosing a solution, (d) implementing the chosen solution, and (e) evaluating the solution.

13 Increase family coping skills. Another important component of the empowerment model is the use of coping skills to handle stress in a family’s life. Professionals can enhance family coping skills by offering information about and referrals to various community support organizations, such as respite care agencies or parent support groups like United Cerebral Palsy or The Arc. Professionals can also increase family coping skills by encouraging families to focus more on their child’s positive characteristics or strengths than on the child’s weaknesses. Another example of a coping skill is to help families identify what they can or cannot control in their lives. These last two coping skills are examples of cognitive strategies.

14 Build family competencies and capacity. Information is very powerful and essential in a family’s movement toward gaining knowledge and achieving empowerment. As suggested by Smith (2001), families can gain valuable insight into their child’s education as well as into the school system as a whole. School professionals can encourage this by providing information on educational issues and concerns as well as on processes for educational decision making. Families should also be given the opportunity to observe the child in school environments and to share the information gained as educational partners.

15 Offer training and professional development to families. Family members should have opportunities to participate in training and professional development. Such participation offers accurate information and skill-building opportunities, which are cornerstones of empowerment. Families should be vital partners in the development and provision of training. This process should start with a needs assessment, as family members have important insight into their unique needs. Parents should also assist in setting agendas, establishing priorities, and evaluating the effectiveness of professional development opportunities. The ultimate level of empowerment for family members in professional development initiatives is to be encouraged in their own leadership as trainers of others.

16 Engage family members in all stages of the Individualized Education Program (IEP) process. Several recommendations for doing so are offered (Lytle & Bordin, 2001; MilesBonart, 2002; Smith, 2001) and include providing IEP training for parents and other IEP team participants; minimizing educational jargon to enhance understanding of the process; affording opportunities to increase educators’ understanding of the child and home environment as well the parents’ understanding of the child’s educational setting; ensuring that all appropriate personnel are present at the meeting; and ensuring appropriate follow-through of IEP decisions. A positive parent-educator partnership is most effective when a common goal is established. This is best expressed as follows: “The common denominator for the IEP is the team’s concern for a particular child” (Lytle & Bordin, 2001, p. 44).

17 Encourage student participation in the IEP meeting. An IEP team meeting can be an intimidating environment, particularly for students with disabilities. Students, as appropriate, should be encouraged to develop and participate in their own IEP process as an initial step in self-advocacy and empowerment. Key steps in a student-led IEP program (McGahee, Mason, Wallace, & Jones, 2001) include (a) assisting students to understand their IEPs, (b) engaging students in developing an IEP, (c) helping students assess and write sections of their IEPs, (d) preparing students to participate in or lead their IEP meetings, and (e) providing support during the meeting.

18 Involve families in community collaboration. Families’ lives can be greatly enhanced through community resources and services that are available for assistance. Schools can serve as conduits between families and the numerous services offered. Making family members aware of resources and services and assisting them in the navigation of the systems in their communities will involve them in self-advocacy and empowerment. Though school personnel can and should make family members aware of community supports, they should recognize that families have insight into what will best meet their unique needs.

19 Foster hope. Families are typically concerned about their child’s future, and large issues loom both in the near and distant landscapes. Will my child attend a post-secondary educational institution? Will my child be able to live independently? What supports will be needed to assist my child in securing full-time employment? Will my child have a full and rich life in the community with friends to provide socialization and enrichment? Although special education professionals must be careful not to paint an unrealistic future scenario for any family, optimism and hope about continued progress and increased independence for their child must dominate family-professional interactions. For one family who was especially worried about their daughter’s employment possibilities after high school, hope was instilled when a special education professional developed several job placements during the last 2 years of school. Through those diverse job experiences, a clear picture emerged of the kind of work environment and supports necessary to ensure a successful employment experience for this student.

20 Assist families in articulating their vision for their child’s future. Families are empowered when they know what they want for their children. Professionals can help families to be realistic and optimistic about the services their children need and to recognize what is appropriate for their children. One process that assists families in clearly articulating their children’s future vision is the Making Action Plans (MAPS) process (Falvey, Forest, Pearpoint, & Rosenberg, 1997). With MAPS, a facilitator leads a group of school professionals and family members in discussing the following questions: What is the child’s history? What are your dreams for your child? What are your nightmares? Who is your child (brief descriptions)? What are your child’s strengths, gifts, and talents? What are your child’s needs? What would your child’s ideal school day look like?

Benefits abound when families of children with disabilities are supported and empowered through the educational system. The 20 ways described here can prove to be fruitful efforts in enhancing family feelings of support and empowerment.

REFERENCES

Falvey, M. A., Forest, M., Pearpoint, J., & Rosenberg, R. (1997). All my life’s a circle. Toronto, Ontario, Canada: Inclusion.

Fiedler, C. R. (2000). Making a difference: Advocacy competencies for special education professionals. Boston: Allyn & Bacon.

Lytle, R., & Bordin, J. (2001). Enhancing the IEP team: Strategies foi parents and professionals. Teaching Exceptional Children, 33(5), 40-44.

McGahee, M., Mason, C., Wallace, T., & Jones, B. (2001). Student- lea IEPS: A guide for student involvement. Arlington, VA: Council for Exceptional Children.

Miles-Bonart, S. (2002, March). A look at variables affecting parent satisfaction with IEP meetings. No Child Left Behind: The vital role of rural schools. Conference proceedings of the 22nd annual National American Council on Rural Special Education (ACRES), Reno, NV.

Murphy, D. L., Lee, I. L., Turnbull, A. P., & Turbiville, V. (1995). The Family-Centered Program Rating Scale: An instrument for program evaluation and change. Journal Of Early Intervention, 19(1), 24-42.

Pugach, M. C., & Johnson, L. J. (2002). Collaborative practitioners, collaborative schools. Denver, CO: Love Publishing.

Smith, S. (2001) Involving parents in the IEP process (ERIC Digest E611 DEO-EC-01-6). Retrieved June 28, 2005, from ERIC database.

Turnbull, A. P., Turnbull, H. R., Erwin, E., & Soodak, L. (2006). Families, professionals, and exceptionality: Positive outcomes through partnership and trust (5th ed.). Columbus, OH: Merrill/ Prentice Hall.

ABOUT THE AUTHORS

Barbara Van Haren, PhD, is a director of special education for the Cooperative Services Education Agency (CESA) f 1 in Brookfield, Wisconsin. She is also an ad hoc special education instructor at the University of Wisconsin-Oshkosh. Her current interests include participation, development, and implementation of Individualized Education Programs; collaboration; and special education leadership. CraigR. Fiedler.JD, PhD, is a professor of special education at the University of WisconsinOshkosh. His current interests include special education advocacy, supporting and empowering families of students with disabilities, disability ethics, and inclusion of children and adults with disabilities in the mainstream of school and community life. Address: Barbara Van Haren, CESA #1, 19601 Bluemound Rd., Ste. 200, Brookfield, WI 53045-5931.

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