Empowering Families of Young Children With

Visual Impairments

Deborah D. Hatton, Ph.D.

During the past decade, the role of professionals who work with families of children with disabilities has shifted from that of experts who advise families on meeting the needs of their children or who provide parent education to that of partners who collaborate with families to promote child development and family well being. In addition, professionals within the fields of early intervention and education are currently much more attuned to diversity within families. As noted by Milian (2000), families may be diverse in terms of culture, values, economic resources, educational levels, gender of parents, spiritual affiliations, and almost any other characteristic related to families. In this article, the rationale for and suggestions for implementing family-centered support are described. Professionals who implement family-centered practices are much more likely to empower families to acquire the confidence, skills, and abilities necessary to serve as life-long advocates for their children.

Family-centered practices include

·        establishing reliable alliances (Turnbull & Turnbull, 2001) with families and other professionals by focusing on family and child strengths, promoting family choice, and collaborating with families and other professionals while respecting and honoring diversity within the context of families, communities, and cultures (DVI, 2003; Hatton, McWilliam, & Winton, 2002; 2003).

·        serving as an effective member of the early intervention team by helping families and other team members understand information specific to children’s visual impairments;

·        approaching early intervention from a support, rather than a provision of services, perspective;

·        collaborating with families and other professionals to complete routines-based assessments that lead to functional outcomes as a part of the individualized family service plan (IFSP) process; and

·        making home visits that promote functional outcomes for both the child and family.

 

Issues specific to early intervention for infants and toddlers with visual impairments

As noted by Hatton et al. (2002) severe visual impairments (VI) may be evident at birth or shortly thereafter. Consequently, parents may learn that their child has a potential disability much earlier than do parents of children with other more subtle disabilities. Teachers of children with visual impairments (TVIs) and orientation and mobility specialists (OMS) should be aware of possible depression in parents of infants and toddlers with VI. All new mothers are at risk for postpartum depression, and parents of children with disabilities are known to be at greater risk for depression.

Parental depression can impede the development of attachment that is critical for social and emotional development. The visual impairment itself might also impede attachment because the infant

  • may not be able to make the direct eye-to-eye contact that is critical to the attachment process (Schore, 1994) and  
  • may display adaptive behaviors that are misinterpreted by caregivers or that are not as reinforcing as the eye-to-eye contact, smiles, coos, and outstretched arms of sighted infants as they respond to their parents.

Rather than smiling, cooing, and reaching for caregivers who approach them, infants with VI may become very still as they listen for caregivers. TVIs and OMS can help parents identify strategies for interacting with their infants that are more reinforcing for both parent and child. For example, by softly talking to the baby as they approach, caregivers can provide alternative sensory cues to elicit smiles and coos and make interactions more enjoyable. To be effective, TVIs and OMS must be able to help caregivers interpret their infants’ behaviors as well as helping them learn to adapt the environment so that the infant receives sensory information as effectively as possible.

Families of young children with visual impairments may be much more interested in the medical diagnoses that are associated with their children’s visual condition than families of older children (Hatton, Topor, & Rosenblum, 2004). Many families report that the diagnoses of visual impairments were often stressful and/or traumatic (Hatton & Waring, 1999). Often, families may want to know as much as possible about their young children’s visual condition and prognosis. Consequently, TVIs and OMS must be knowledgeable about children’s visual conditions and appropriate resources in order to help interpret medical information, if needed. Eye specialists may not explain that children with legal blindness may have useful vision and may even become print readers rather than Braille readers. Additionally, parents may not understand that it is difficult to determine the amount of useful vision an infant has and that visual function can improve over time.

In addition to being knowledgeable about medical issues specific to children with VI, TVIs and OMS must understand the impact of visual impairment on development. This knowledge can assist families in adapting the environment and their interactions with their children to facilitate optimal use of sensory information.  A discussion of these issues is beyond the scope of this paper; however, Chen (2001) provided a helpful discussion of these issues. For example, visual impairments can affect early cognitive and motor skills, with fine motor, object manipulation, and other skills developing later. Similarly, delays in symbolic play may occur. 

 

Family-Centered Practices. Family-centered practices emphasize family strengths, empowering families to make their own decisions, collaboration between the family and other professionals, and a holistic view of the family that appreciates and respects diversity. TVIs and OMS want to help make life better for children with VI and their families. Although it might be much easier for professionals to pick up the phone or send emails that will result in immediate access to supports and services for families, they should consider whether it might more helpful to support families as they access and secure resources on their own.

The idea of giving a hungry man a fish or a fishing pole could apply to work with families. If professionals support families in identifying and accessing resources, families acquire the skills and confidence needed to secure resources over time. By establishing respectful relationships with families and by assisting families to make choices about services and supports, TVIs and OMS demonstrate family-centered practices that will empower families to become lifelong advocates for their children with VI.

 

Teams. Part C of IDEA (1997) requires that a multidisciplinary team assess infants and toddlers and develop the IFSP so that at least two different disciplines are involved. Input from many disciplines may be required in order to address the family’s priorities and the child’s needs related to early intervention. The intervention or education team for children with VI should include a teacher of children with VI and an orientation and mobility specialist as well as other professionals such as therapists and diagnosticians. Therefore, TVIs and OMS must be able to work collaboratively with parents and a variety of professionals on teams.  

The Early Intervention Training Center for Infants and Toddlers With Visual Impairments (2003) suggests the following strategies for increasing family involvement on the IFSP team, thereby empowering families to have more input and control over the process.

  • Prepare families for working with teams and the IFSP meeting.
  • Discuss the purpose of the IFSP and the need for family involvement on the early intervention team with families.
  • Meet with parents prior to the formal IFSP meeting to discuss their priorities.
  • Suggest that parents write down questions or concerns prior to the IFSP meeting and take that list with them. 
  • Leave the IFSP “Concerns, Priorities, and Resources” page with the family before the IFSP meeting.
  • Recommend supports and services that address the family’s priorities and concerns as well as the needs identified during assessment of the child.
  • Help families understand each team member’s role.
  • Help families understand that the team wants their input and feedback.
  • Schedule the IFSP meeting and services and supports at times that are convenient for families
  • Consider the family’s literacy level when conducting meetings and completing IFSP forms.
  • Use parents’ own words on the IFSP.
  • Limit the influence of professionals on the IFSP and thereby ensure family ownership and responsibility.
  • Ensure parents have the same materials during the meeting that other team members have.
  • Stop and explain jargon used during meetings.
  • Before closing the IFSP meeting, make certain that the family’s concerns and questions are answered.

 

Support-based early intervention.  For infants and toddlers, the individualized family service plan (IFSP) should focus on family and child strengths while also addressing the family’s priorities. Early interventionists are increasingly providing broad-based support rather than individual child-centered therapy. McWilliam and Scott (2001) suggest that support provided by professionals to families falls into the categories described below.

·        Emotional support includes the following characteristics or behaviors (McWilliam, Tocci, & Harbin,1998):

  • positiveness about the child and the family;
  • responsiveness, including taking action when appropriate;
  • orientation to the whole family, not just the child;
  • friendliness (treating the family as you would your neighbor);
  • sensitivity (walking in the family's shoes);
  • competence with and about children; and
  • competence with and about communities.

·        Material support refers to resources needed to implement interventions that meet family priorities--access to equipment, supplies, assistive technologies, and information about financial resources, including those pertaining to food (e.g., WIC, food stamps), shelter, and clothing. Unless families’ basic needs for food, shelter, and security are met, they will not have the resources necessary to serve as members of the early intervention team and as advocates for their children.

·        Informational support includes information about child development or specialized intervention needs (what comes next, what are other children this age doing), the child's condition or disability, resources and services, and activities that will enhance the child’s development.

 

Developing functional outcomes. Functional outcomes are outcomes that make day-to-day life for both the child and family easier while also promoting the child’s development and attainment of IFSP goals. According to Hatton et al. (2003), functional outcomes for very young children with disabilities include engagement, independence, and social relationships.

  • Engagement is the amount of time a child spends interacting with the environment in a developmentally and contextually appropriate manner.
  • Independence is functioning with as little assistance from others as possible. Families differ in how independently they want their young children to do things, and these differences are sometimes socioculturally determined.
  • Social relationships provide motivation and serve as the foundation for learning and competence. Social relationships change as the child ages and involve the ability to communicate, get along with others, develop trust, interact appropriately, play appropriately, and form friendships.

Ideally, routines-based assessment will be used prior to the development of the IFSP to identify functional outcomes that are family priorities as well as the daily routines within which they occur. Routines-based assessment involves an informal interview in which families discuss daily routines with early interventionists (TVIs and OMS, in many cases)  to identify priorities for early intervention that (a) are functional, (b) enhance daily life for the family, and (c) promote the child’s development (Hatton et al., 2003).

 

Effective home visits. Most early intervention is provided during weekly home visits that last about one hour, often beginning with a discussion about current family concerns and priorities. To be effective, TVIs and OMS must collaborate closely with families on issues and goals that are important to the family. Working with the child in isolation cannot be expected to have much, if any, impact because infants and toddlers cannot generalize information from weekly intervention sessions of one hour to other situations and sessions throughout the week. If, however, TVIs and OMS focus on support that can be used throughout the week by families, they can provide intervention that addresses the family’s immediate concerns and priorities and can take advantage of the “teachable moment” when families are most motivated to actually implement recommendations. Skillful TVIs and OMS realize this and are flexible enough to adapt recommendations to meet the family’s current and ongoing priorities in collaboration with the other members of the early intervention team.

            In summary, TVIs and OMS can empower families of young children with VI to become life-long advocates for their children by

·        implementing family-centered practices that recognize the strengths of children and families, respects diversity of all types, encourages family decision making and control of resources, and views the child within the context of the family.

·        serving as an effective member of the early intervention team while promoting family participation on teams.

·        providing broad-based support that builds upon existing family resources rather than providing discrete child-centered services.

·        recognizing that most intervention for young children involves the provision of emotional, material, and informational support that can be used by families throughout the week within the context of daily activity settings and routines.

·        recognizing the importance of routines-based assessment in identifying, developing, and implementing functional outcomes that make daily routines and activities more enjoyable and that facilitate optimal child development.

·        making effective home visits that focus on family priorities while also promoting optimal development of the child.

·        encouraging families to develop advocacy skills that will assist them in securing resources for their children.

 

References

Chen, D. (2001). Visual impairment in young children: A Review of the literature with

implications for working with families of diverse cultural and linguistic backgrounds (Tech. Rep. No. 7). University of Illinois at Urbana-Champaign, Early Childhood Research Institute on Culturally and Linguistically Appropriate Services.   Retrieved, April 29, 2002 , from http://clas.uiuc.edu/techreport/tech7.html#c2

DVI (Division on Visual Impairments, Council for Exceptional Children). 
          (2003). Family-centered practices for young children with visual
          impairments.  Position paper. Retrieved November 5, 2003 , from

          http://www.ed.arizona.edu/dvi

EIVI Training Center . (2003). Thoughts from the field: Including parents on the early

intervention team (Handout FCP 2-F). Chapel Hill, NC: Early Intervention Training Center for Infants and Toddlers With Visual Impairments, FPG Child Development Institute, University of North Carolina at Chapel Hill.

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visual impairments. Paper presented at the 20th International Seminar on Preschool Blind, Pacific Grove , CA .

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McWilliam, R. A., Tocci, L., & Harbin , G. L. (1998). Family-centered services: Service

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