Increasing the Social and Communication Participation of Children with Severe Communication Disabilities through Parent-Clinician Collaboration
Monica Kaniamattam, Ph.D., CCC-SLP and Judith Oxley. Ph.D., CCC-SLP
United Nations Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities emphasizes that children with disabilities have the same rights as other children, including social inclusion, and are entitled to active participation in all aspects of family and community life[1]. However, research from developed and developing countries shows that children with developmental disabilities, including communication delays, have limited participation opportunities[2]. Although under-researched, the severity of social exclusion in developing countries has been found to be more significant[3].
For children with severe communication delay , an increase in meaningful participation in daily activities is a fundamental communication intervention goal promoted by organizations like the World Health Organization (WHO), the American Speech Language and Hearing Association, and the Division for Early Childhood [4]. One key factor for improving social participation is empowering parents to advocate for their children from an early age. Early intervention perspectives emphasize the importance of family-centered interventions and the role of parents as communication facilitators for their children with developmental disabilities [5].
Parents' role and expectations from therapy
Using the WHO International Classification of Functioning, Disability, and Health for Children and Youth framework, the environmental and personal factors that facilitated or restricted the social participation opportunities of children with severe communication delays in Kerala, India, through parental perspectives [6]. Sixteen parents of children with developmental disabilities as young as four and as old as twenty-seven participated in this study. A key finding from the study was a clear shift in perspectives regarding what parents expected from communication interventions and their role in the intervention process as their children grew older.
While parents of young children (younger than 12 years old) expected communication intervention to assist their children in developing pre-academic skills and to 'say words,' parents of older children (over 12 years old) expressed concern about social interaction. The latter wanted to increase participation opportunities for their children by offering meaningful activities and vocational opportunities. They also actively challenged the stigma and unwelcoming attitude of their extended family and society, which restricted their children's participation opportunities. Here are two excerpts that reveal parents' shifted perspective:
“There is no vocational training center anywhere nearby. She is more mature now, right, so train her in aspects other than academics. But no services are available here”.
...now we take him to places…marriage functions in the neighborhood. On one such occasion, a relative asked why I brought him along…is it for the one plate of food they serve…I gave a befitting reply, that it’s not the plate of food that mattered, it is our son’s happiness. If he stayed locked up in the house all the time, he would never get to see the outside world … He should be allowed to go out like everyone else…. He is also a part of society.
Our findings illustrate that it takes parents years to recognize the value of social participation and build resilience to pursue it. While their children are young, they focus on normalizing the child. However, when the children are older, and the normalization process has not happened, the focus changes to improving the quality of life for the older child/adolescent/young adult.
Parent-SLP collaboration to increase social participation opportunities: A call to action.
The findings emphasize the importance of SLPs coaching parents to help them realize the importance of social participation from an early age. While recognizing the parent's position on normalizing the child, SLPs can help the parent broaden the vision of what the child can do so that it includes nonacademic goals, such as developing friendships and participating in ordinary life (e.g., leisure and hobbies). Here are some action items for SLPs to help parents value social participation and improve the family's quality of life from early childhood:
Provide education and information for parents from early childhood to help them view habilitation as a process by which they can decide what support they will need to enhance their children's participation in all aspects of their daily lives.
Adopt a strength-based perspective in early intervention that encourages parents to build on the child’s abilities so the child can reach their full potential.
Facilitate positive parental adaptation to their child’s disability to promote empowerment and minimize the focus on normalization (i.e., a cure or fix), which can lead parents to feel a sense of helplessness.
4. Provide parents with the information, knowledge, and skills necessary to foster their children's social participation while recognizing the persistent environmental and personal barriers that could hinder their child's progress.
5. Assist in providing social support for parents through formal and informal channels throughout the rehabilitation process to share feelings and develop peer relationships.
6. Engage in advocacy at all levels to promote the urgent need to improve the inclusion and participation opportunities for individuals with communication disabilities of all ages.
Conclusion
Efforts to support increased parental involvement and empowerment for meaningful social participation align with the WHO’s Rehabilitation 2030 initiative to tackle the challenges associated with delayed and insufficient interventions for developmental disabilities in low and middle-income countries [7]. In collaboration with parents, SLPs can play a key factor in providing family-centered intervention and ensuring that social participation is a right for all children.
References
[1] World Health Organization and Fundação Calouste Gulbenkian, Promoting rights and community living for children with psychosocial disabilities. Geneva: World Health Organization, 2015. Accessed: Mar. 24, 2023. [Online]. Available: https://apps.who.int/iris/handle/10665/184033