The involvement of parents and caregivers of children who are deaf/hard-of-hearing (D/HH) is integral to the success of early hearing detection and intervention (EHDI) programs.1,2 They offer invaluable perspectives on the impact of decisions on policies and processes at local, state, and national levels. The international consensus statement on family-centered early intervention best practices recommends incorporating parent leadership into the strategic development and operational function of EHDI programs.1 However, early intervention (EI) providers and other professionals who work with families of children who are D/HH can be uncertain about how they can effectively support the development of parent leaders.
The disability rights adage “nothing about us without us” stresses that policies should not be made without the full and direct involvement of group members who are affected by such policies.3 For families of children who are D/HH, “nothing about us without us” reflects the belief that those with the lived experience of parenting a D/HH child have much to offer to committees and advisory boards, and thus have a right to be at the table. (This also applies to adults who are d/Deaf or hard-of-hearing and have much to offer to families and professionals from their diverse lived experiences).
Parents of children across the disability spectrum have long fought to be at the table. They have fought and won the right for their children's access to free and appropriate public education—one where in their children have access to the general curriculum and are educated alongside typically developing peers.4,5 In fact, parents have led efforts to define key principles in the Individuals with Disabilities Education Act, including parent participation in the development of their child's Individualized Education Program, the right to due process, and parent notification of any evaluation conducted with the child or changes in the educational services or programming. Parents have also advocated for the mandate that parents be involved in policy forums, such as advisory councils at the state and national levels.5
The Joint Commission on Infant Hearing (JCIH) 2013 supplement to the 2007 JCIH position statement outlines principles and guidelines for early intervention after confirmation of deafness, including the active participation of families in the development and implementation of EHDI systems at the state and local levels. The recently updated JCIH position statement specifically calls for parent leadership in the strategic development and operations of EHDI programs.7,8 In fact, the U.S. Health Resources and Services Administration mandates that 25 percent of a state's EHDI advisory board is composed of families and d/Deaf/hard-of-hearing adults. As such, states must do due diligence in ensuring their participation at the system level.
BENEFITS & BARRIERS
Parent leaders are beneficial to successful EHDI programs. At a system level, families bring “wisdom, experience, and a passion for improvement that is critical to improving the systems of care” designed to support them.8 Parents can provide important feedback on state EHDI systems that are notoriously complex; in some states, the pipeline from newborn hearing screening to diagnosis to EI enrollment crosses two or three state agencies. Also, by serving in state and local advisory councils, parent leaders can develop a public identity.9 As these parents gain more knowledge and experience, they can be called on for their insights into policy areas impacting DHH children and serve as representatives of the greater community of children and families.
But what prevents parents from becoming leaders in state EHDI programs? What are the barriers that keep parent leaders from being at the table and, once they are there, from fully participating? And how can hearing care professionals help reduce and remove these barriers?
Major barriers to parent participation and leadership in EHDI systems include the lack of paid time off and inflexible work hours to attend meetings that are typically held during business hours. Consequently, parents may lose wages or income if they miss work to attend to EHDI tasks. With some foresight and planning, these barriers can be overcome at the organization level (i.e., EHDI advisory boards; see Table 1).
Some parents may not be aware of organizations relevant to their family or of the need for parent representatives in these groups. Hearing care professionals can help address these gaps with the responses in Table 2. Some parents may hesitate to get involved and become leaders because of fear—of not being smart enough, feeling like they don't belong, or fear of the unknown. Professionals can mitigate parents’ fears by creating an environment where parents feel valued and respected. Helping parents understand how their knowledge and experience fit into systems, and clarifying what is expected of them in their leadership role can ease their fear and anxiety and encourage them to be actively engaged.
HOW PROFESSIONALS CAN SUPPORT PARENT LEADERS
As early intervention and related professionals, we create policies and procedures with the ultimate goal of helping DHH children develop age-appropriate language and socioemotional skills. However, professionals can inadvertently become gatekeepers in terms of inviting parents to serve in leadership roles and supporting their development as leaders. To promote the development and growth of parent leaders, consider these strategies:
- Establish rapport and build trust with parents. A mutually respectful relationship can result in collaborative work such as co-organizing a project or co-presenting at conferences and workshops.
- Maintain confidentiality. Professionals and parents may develop close relationships, but professionals must remain clear about their commitment to keeping any personal information about parents and families confidential.
- Give parents time to learn related processes and fully understand their roles. Avoid talking over or around parents as they learn the vocabulary and jargon, as well as procedures and processes related to their roles. As a professional, take time to meet with parents interested in leadership roles.
- Introduce parents to the other committee members. Help them feel welcome and comfortable in an environment where they are likely vastly outnumbered by professionals. It takes time to build a network. Professionals can facilitate that process at the beginning of a parent leader's journey.
- Listen more, talk less. Being a good ally requires having good listening skills and being in the moment. Professionals can have a hard time with this; our responsibilities (i.e., intervention sessions, staff meetings) and our own agenda (i.e., catching up with colleagues at a committee meeting, wanting to focus on our passion projects) can prevent us from listening.
- Listen to learn, not to respond. Parents want to share their experiences and want professionals to understand their lives and experiences. Understand your professional biases and work toward overcoming those biases when working with or learning from families.
- Step back and let parent leaders have the floor to lead in their own ways. Some parents are big-picture thinkers while others love delving into the details. Assist parents in finding their voice as a leader, and embrace your important role as a follower.
Parents of children with disabilities have a long history of advocating for their children's right to education and for parents’ right to be involved in the systems that directly affect their families. Consider implementing these strategies (and check out other tips online10) and creating unique ways to support the development of parent leaders in your EHDI programs.
1. Moeller, M. P., Carr, G., Seaver, L., Stredler-Brown, A., & Holzinger, D. (2013). Best Practices in Family-Centered Early Intervention for Children Who Are Deaf or Hard of Hearing: An International Consensus Statement. Journal of Deaf Studies and Deaf Education
, 18(4), 429–445. DOI: 10.1093/deafed/ent034
2. Muse, C., Harrison, J., Yoshinaga-Itano, C., Grimes, A., Brookhouser, P. E., Epstein, S.,… & Martin, P. (2013). Supplement to the JCIH 2007 position statement: Principles and guidelines for early intervention after confirmation that a child is deaf or hard of hearing. Pediatrics
, 31(4), e1324-e1349.
3. Charlton, J. I. (2011). Nothing about us without us: Disability oppression and empowerment
. Brantford, Ont.: W. Ross MacDonald School Resource Services Library.
4. Spaulding, L. S., & Pratt, S. M. (2015). A Review and Analysis of the History of Special Education and Disability Advocacy in the United States. American Educational History Journal
, 42(1/2), 91-109.
5. Yell, M. L., Rogers, D., & Rogers, E. L. (1998). The Legal History of Special Education: What a Long, Strange Trip It's Been! Remedial and Special Education
(4), 219–228. https://doi.org/10.1177/074193259801900405
6. Shepherd, K. G., & Kervick, C. T. (2016). Enhancing Collaborative Leadership Among Parents of Children With Disabilities: New Directions for Policy and Practice. Journal of Disability Policy Studies
(1), 32–42. DOI: 10.1177/1044207315576081
7. Year 2019 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs. Journal of Early Hearing Detection and Intervention,
4(2), 1-44. DOI: 10.15142/fptk-b748
8. Jeppson, E. S., & Thomas, J. (1995). Essential allies: Families as advisors. Bethesda, MD: Institute for Family Centered Care.
9. Popper, B. K. (1994, Spring-Summer). Who you gonna call? Early Childhood Bulletin
, pp. 1-3.