Where Families Find Support

The Issue

Families who have children who are Deaf or Hard-of-Hearing (DHH) need support from a variety of sources and perspectives to gain the knowledge, skills, and confidence to make informed decisions regarding their children. These responsibilities can be initially intimidating to a family that is unfamiliar with the complexities of hearing loss.

Families often feel rushed to make critical decisions at a time commonly filled with strong emotions including grief, stress, and confusion.  Beyond the initial identification time period, this process continues as children enter the school years.  This is especially evident as a family moves from being the primary to secondary decision-maker when these decisions transition to the DHH child as the child navigates the educational system   It is imperative that the systems that serve families (medical, educational, family-to-family support, and DHH adult perspectives) work together to ensure that families get the support and information they need. As such, all families should have access to develop meaningful partnerships with those identified perspectives for a holistic mindset to be developed by parents.

What we know

Parent involvement is a major predictor of a child’s developmental outcomes and educational success, and includes being an active participant in the decision-making process. Every DHH child is a unique individual in the context of the deaf experience. What works for one child – in terms of language, communication, educational placement and services, as well as self-identity- does not mean that same path to success will work for all DHH children. Parents need access to a variety of sources when making educational and linguistic decisions, including:

  • Professionals (medical and educational)
  • Other parents of DHH children
  • DHH adults who with the lived experiences of deafness
  • Pre-existing communities (families, friends, places of worship, etc.)

Parents also have different preferences in how they receive support and information passively or actively.

  • Passively: Internet, articles, books, newspapers, videos, resource guides, etc.
  • Actively: One-to-one support, in-person meetings, and social media interactions

Families of children who are DHH also report that they prefer parent-to-parent support and information from sources specific to deafness, such as Hands & Voices, as opposed to broader generic disability support resources.

What we don’t know

While access to information and “guidance” from these sources (both online and face-to-face) provides families with support from a variety of perspectives, the impact of mis-information from unreliable or bias sources is unknown.

Implications

From the day a family learns that they have a DHH child, there is a foundational need to take an active role in the decision-making process for the needs of their child in the areas of communication, language development, technology options, and educational considerations. It is critically important that families are supported from the beginning and throughout the school years. These basic principles will ensure that families find their empowered voice for effective involvement including:

  1. Delivering information in a way that does not skew perspectives, research, opinions, and support in a way that intentionally strives to manipulate parents in their decision-making process. Let the parents be the owners of decision-making through support that is delivered in an unbiased manner.
  2. Recognizing the power of parents from the beginning including the valuable assets they bring to the table from day one, such as: love, a holistic view of their child, understanding their own priorities and values, and the right to make choices on behalf of their child in those contexts.
  3. Ensuring that professionals give information and resources from a variety of perspectives, and through the mechanisms that most resonates with them (i.e., passive or active supports), meet families where they are in order to move them up the learning curve.

Posted on April 18, 2019 by
Janet DesGeorges
Hands & Voices
janet{at}handsandvoices.org

 

Further reading