Building Bridges and Breaking Down The Barriers That Parents of Children With Down Syndrome Face in Their Collaboration with School Professionals

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BY JUDITH HARDING, Ed.D.

Collaboration with parents of children with Down syndrome is legally mandated and pedagogically sound. This process allows parents and professionals to share in mutual decision making regarding the student’s educational program. Positive collaboration works because it makes available multiple perspectives, expands competence, and enhances the process for all involved. The benefits of positive partnerships between parents and professionals may result in improving academic achievement and functional life skills for students. Yet parents of children with Down syndrome continue to experience barriers in their partnership with school professionals (e.g., special and general education teachers, related service personnel, case managers, and school administrators). The relationship with school professionals that is necessary to plan the appropriate special education program can, at times, be perceived as stressful for these parents.

The students are usually involved in an early intervention program and receive long-term services to support their academic goals as they progress to secondary-aged learners. Consequently, parents and school professionals often have frequent interactions and are engaged in a partnership that continues throughout each student’s educational career. Given the ultimate goal to promote academic and social competence, professional practices that may create potential barriers to collaboration for the special education program need to be addressed by those charged with serving students and their families. Establishing optimal collaboration with these parents is critical due to the nature and complexity of the student’s learning characteristics.

WHAT ARE SOME BARRIERS AND WHAT CAN SCHOOL PROFESSIONALS DO TO ENHANCE COLLABORATION WITH PARENTS?

  1. Communicating a dismal prognosis, lack of follow-up, and not considering the parents’ concerns can foster unhappiness in the relationship and partnership between home and school. Communication should not include negative perceptions or express possible limitations, as this practice can impede collaboration. Effective communication implies understanding and support. Behaviors that enhance communication include the practice of actively listening in a nonjudgmental manner, paraphrasing, attending to both verbal and nonverbal behaviors, and responding to parental concerns.
  2. Professionals often have insufficient knowledge of the child’s disability. Parents at times must inform staff and impart knowledge of their child’s disability. Professional development training about the characteristics of Down syndrome and the possible achievements of such students may increase awareness. Attendance at seminars, support groups, and online webinars may aid professionals in learning more about their student’s diagnosis. Knowledge may be enhanced through involvement in local community activities that promote inclusion and acceptance of individuals with Down syndrome such as the National Buddy Walk Programs; GIGI’s, an achievement center that supports social goals for youth with Down syndrome; and Special Olympics, a sports organization that celebrates the achievement of athletes with disabilities. Professionals can also become familiar with national advocacy organizations, such as the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC).
  3. Presumptuous conclusions can limit academic expectations. Based on the child’s Down syndrome diagnosis, parents are frequently told by the professionals that their child has “plateaued” which implies that current educational programs could not meet the child’s needs. Further, when professionals impart such information about their child, this prognosis can have a negative impact on the family’s ambitions, goals, and sense of well-being.

A factor that contributes to parents’ perceptions of lack of commitment is discrepant views of their child or child’s needs. Commitment to quality education with high expectations should be the norm for all students with Down syndrome. In terms of realizable academic achievement, some individuals with Down syndrome complete high school, a transition to employment program, or pursue studies at their local community college. They become contributing members of society. The tendency for presumed low academic expectations for students with intellectual disabilities is not only pejorative but can perpetuate prejudicial attitudes.

  1. When parental knowledge and preferences are not regarded as well as stereotypical and biased responses to parental concerns are demonstrated, oftentimes conflict resulting in litigation can occur. It is important that professionals demonstrate respect for the knowledge, preferences, and expertise that parents offer as related to their child. Establishing a meaningful and effective alliance with parents is contingent upon the professionals accepting the roles and responsibilities of parents as primary educational decision makers and making an effort to forge a relationship with them based on affirmation, high regard, and courtesy.

 During IEP meetings, parents may feel overwhelmed and outnumbered. Professionals need to consider the group dynamics at formal meetings and be sensitive toward parents’ feelings. It is important that professionals affirm the strengths of the child and treat parents with dignity and as competent and knowledgeable about their child.

In response to the complex nature of the cognitive, physical, and social concerns of students with Down syndrome, ongoing and effective collaborative partnerships with the parents are particularly essential. The onus is on the school professionals to break down perceived barriers in communication, knowledge of the disability, academic expectations, and respect. The need to build bridges that may sustain favorable practices and enhance the necessary collaborative partnership with parents is critical in creating an educational community that fosters optimal parent and school collaboration to mutually support the student’s learning and development.

 

Author: Judith Harding, EdD, recently conducted a doctoral study with parents of students with Down syndrome regarding their perceptions of collaboration with school professionals for the services provided to their children. She has served families and students with special needs as an educator for more than three decades, nationally and internationally, and is an advocate for families of children with Down syndrome. Presently, she is an online instructor for graduate students pursuing their degree in special education.

 

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