Early Intervention

Early Intervention

Training Center

for Infants and Toddlers With

Visual Impairments

FAMILY-CENTERED PRACTICES

VI-Specific Issues

Introduction

The purpose of this session is to review the basic knowledge and skills that are required to provide effective early intervention through the implementation of family-centered practices, including collaboration with families and other professionals. Family-centered practices provide the foundation for effective early intervention under Best Start. In this session we will synthesize key concepts and provide VI-specific examples of the topics listed below.

1. Building Reliable Partnerships

2. Teams and Service Coordination

3. Support-Based Early Intervention and Developing Ecomaps

4. Eligibility and Routines-Based Assessment

5. Functional Outcomes and the ICFSP Process

6. Effective Home Visits

Objectives

After completing this session, participants will

1. describe strategies that will assist ECVCs as they build reliable partnerships with families and professionals and implement family-centered practices.

2. describe strategies that ECVCs use as members of teams to effectively communicate and collaborate with families and other professionals; and identify the benefits of the transdisciplinary method of service delivery and the responsibilities of the service coordinator.

3. describe the three types of support that are important for families of young children with visual impairments and explain the advantages of developing an ecomap, a graphic representation of a family’s existing supports.

4. describe the criteria for eligibility and the rationale for family-centered, routines-based assessment and identification of the family’s priorities, strengths, and concerns.

5. identify the eight required components of individual child and family service plans (ICFSPs) and strategies for developing functional ICFSP goals and objectives.

Major Points

A. Reliable partnerships

Building reliable partnerships with families and professionals is the key to providing effective early intervention for children with visual impairments and their families. In order to build reliable partnerships, early childhood vision consultants (ECVCs) employ family-centered practices to provide a variety of supports to families and children, while respecting and honoring diversity.

Effective early intervention takes place in the context of mutually trusting and respectful relationships among family members, the ECVC, and other early intervention team members. ECVCs can promote the development of such relationships by implementing family-centered practices. These practices include collaborating with families and other professionals to affirm family strengths while respecting and honoring diversity, to promote family choice, and to approach early intervention from a holistic perspective. These practices represent a paradigm shift from child-centered services to family-centered support.

Turnbull and Turnbull (2001) have used the term reliable partnerships to describe dynamic relationships between families and professionals in which they experience individual and collective empowerment by sharing their resources to make joint decisions. Reliable partnerships involve the following eight obligations (Turnbull & Turnbull, 2001, p. 58):

1. knowing yourself,

2. knowing families,

3. honoring cultural diversity,

4. affirming and building on family strengths,

5. promoting family choices,

6. affirming great expectations,

7. communicating positively, and

8. warranting trust and respect.

To establish positive relationships with families, ECVCs should be sensitive and responsive to family concerns. Often, parents of young children with visual impairments (VI) report that the diagnosis of blindness or visual impairment in the child was overwhelming or devastating (Hatton & Waring, 1999). Families may experience an array of emotions as they process the unexpected news. In the past decade it has become apparent that, following the diagnosis of a disability, many families do not experience distinct stages of grief (Fazzi, Klein, Pogrund, & Salcedo, 2002). Instead, families experience sadness, anger, or anxiety at unexpected times (e.g., when interacting with typically developing children who are acquiring milestones at a faster rate) or at transitional times related to the child’s impairment or disability (birthdays, transition to preschool services, etc.).

Just as families react differently to the diagnosis of visual impairments, members within each family react differently. Schmitt and Armenta-Schmitt (1999) note that fathers of children with VI express feelings of isolation, guilt, and blame. Fathers’ sharing their feelings with other fathers in similar situations was found to be helpful and to facilitate accepting, participatory, and joyful relationships with their children with visual impairments.

Many families with children who have recently received a diagnosis of a visual impairment seek factual information about the child’s medical condition, the impact of the visual disability on the child, educational programs and service agencies, the use of equipment and materials, opportunities for counseling for the family, and contact with other parents of children with visual impairments (Leyser & Heinze, 2001). ECVCs should be prepared to share resources that will provide informational support. Additionally, ECVCs must stay informed about current medical research and treatments because of the complex medical issues that may be associated with visual impairments in young children.

There are many sources of helpful information for both the families of children with visual impairments and the professionals who collaborate with them. The Blind Childrens Center in Los Angeles offers several booklets that can be helpful for ECVCs and parents such as Heart to Heart: Parents of Blind and Partially Sighted Children Talk About Their Feelings (Mansfield, Hayashi, Horn, & Kekelis, 1986) and Dancing Cheek to Cheek (Meyers & Lansky, 1991). Visually Impaired Preschool Services, Inc. (VIPS; Louisville, KY) produces the Can Do! video series that describes issues specific to very young children with visual impairments. Full of Hope (VIPS, 2002) was developed to provide encouragement to families of young children who have recently been diagnosed with visual impairments. The Blind Babies Foundation in San Francisco has developed Pediatric Visual Diagnosis Fact Sheets (1999) and other resources related to common eye conditions in infants and toddlers with VI.

Some families may wish to learn more about provincial and national organizations that provide support to children with visual impairments and their families. Links to Canadian and International organizations and vendors can be accessed through the Provincial Resource Centre for the Visually Impaired (http://www.prcvi.org/links/) The National Association for Parents of Children with Visual Impairments (NAPVI; http://www.spedex.com/napvi/), an organization for parents of children with visual impairments, provides a newsletter with a variety of information of interest to families and the professionals who serve them. NAPVI also sponsors workshops and conferences throughout the year. The National Organization of Parents of Blind Children (NOPBC; http://www.nfb.org/nopbc.htm) provides families with support, encouragement, and information.

Another component of building reliable partnerships is developing an awareness of the many ethnic and cultural groups that ECVCs may encounter. Most ECVCs are women from European Canadian/American backgrounds (Dote-Kwan, Chen, & Hughes, 2001). It is important for ECVCs to cultivate accepting and nonjudgmental attitudes toward the values, norms, and expectations of the families they meet. ECVCs should examine their own perceptions and biases, and strive to understand them, as the first step in establishing reliable partnerships with families. With this understanding, ECVCs can then identify differences in values, goals, and expectations between them and families. Through collaboration and open dialogue about differences, ECVCs can use the principles of cultural reciprocity to facilitate reliable partnerships with families from other cultures. Cultural reciprocity refers to a two-way process, typically initiated by service providers, by which service providers and families from different cultures share information about values and culture to find mutual ground for effective communication. Cultural reciprocity does not require ECVCs to give up or change their values, but it does require openness, a willingness to learn and understand, and an ability to regard the family in a positive light.

Milian and Erin (2001) provide insight into specific religious and ethnic interpretations of visual impairments that may influence how ECVCs interact with families. Some cultural responses to visual impairments include minimal emphasis on independence, special cultural meanings of visual impairments (e.g., the belief that a person with visual impairment has special powers), and the belief that the presence of visual impairment is retribution for sin, with accompanying societal expectations and behaviors (Erin, 2002). However, different families within a culture are very heterogeneous. ECVCs should be careful not to stereotype families. Families vary in the extent to which cultural traditions, values, and histories influence their daily routines. ECVCs should be aware of possible cultural interpretations and responses to visual impairments while realizing that economic and educational status may have more influence on some families than their cultural or ethnic affiliations (Santos & Reese, 1999).

Peggy, a ECVC working with the Sanchez family, felt that Mrs. Sanchez was not allowing Lucinda, 15-month-old with optic nerve hypoplasia, to feed herself independently, as Mrs. Sanchez always spoon-fed Lucinda or gave her a bottle. The family had identified having Lucinda try a greater variety of foods, in order for her to have a more balanced diet, as a priority in the individualized family service plan (ICFSP). Peggy suspected that if Lucinda had more control over her food and more independent-eating skills, she might be willing to try new foods. Peggy had made a number of suggestions to Mrs. Sanchez over the past two months. These suggestions included using hand-under-hand modeling, providing small amounts of finger food when Lucinda was hungry, and reducing bottle feeding. Although Mrs. Sanchez was polite and always agreed, she never followed through on suggestions. Peggy felt her frustration and irritation level rise with each visit to the Sanchez home. As she was driving to the Sanchez home one afternoon, Peggy suddenly realized that although both she and Mrs. Sanchez were concerned about Lucinda’s restricted diet, they did not agree on the same strategy for expanding her diet. During the next home visit, Peggy listened to Mrs. Sanchez and learned about what was important to her as she fed Lucinda. It became apparent that Mrs. Sanchez enjoyed feeding her baby and was not eager for Lucinda to feed herself. However, Mrs. Sanchez did think that it was important for Lucinda to eat a variety of nutritious foods. Peggy realized that she might need to postpone her focus on independent-eating skills. Instead Peggy decided to collaborate more closely with the family to identify strategies that were more appealing to Lucinda’s family.

B. Transdisciplinary approach

ECVCs use a variety of strategies for sharing vision-specific information as they collaborate with other team members (including the family). ECVCs serving infants and toddlers must be familiar with the role of the service coordinator in early intervention and be prepared to assume that role if appropriate.

For a family with an infant or toddler with a visual impairment, ECVCs and orientation and mobility specialists (OMSs) are critical members of the early intervention team. Because it is not possible to separate the development of infants, toddlers and preschoolers into discrete developmental domains, the family and all service providers on the early intervention team must work together to share information, learn new skills, share responsibilities, and be respectful of one another.

In the past few years, the transdisciplinary approach for teams has been described as being particularly appropriate for early intervention (Correa, Fazzi, & Pogrund, 2002). In the transdisciplinary approach, the primary early interventionist typically is the regular contact for the family. A primary early interventionist supports the family in many ways, including helping the family implement interventions suggested by other professionals. ECVCs will function either as the primary early interventionist, especially when visual impairment is the main concern, or as a consultant to the primary early interventionist. This family-centered transdisciplinary approach is recommended for providing services to families of young children with visual impairments and other disabilities because

• almost all child-level intervention occurs between intervention sessions, and it helps families to have a primary source of support that effectively integrates recommendations from different disciplines, rather than have to interact with multiple professionals who might offer conflicting advice.

• professionals who provide services using alternative approaches (e.g., multidisciplinary or interdisciplinary models) tend to focus on a single developmental domain rather than on holistic functional outcomes that have an impact on daily routines and are seen as priorities by families.

Often, family and other professional team members have no prior experience with visual impairments and will depend upon the ECVC for information and guidance. ECVCs who act in isolation may not be as effective as those who work collaboratively to achieve common goals across settings and disciplines. When supporting other team members who have little or no experience with visual impairments, the ECVC must clearly communicate factual and conceptual information, such as how visual impairment affects all areas of development, and the implications of specific diagnoses on development and visual functioning.

In turn, ECVCs must also seek information from other team members and incorporate this knowledge into their own intervention repertoire. For example, occupational therapists (OTs) have extensive knowledge about appropriate positioning of children. As ECVCs and occupational therapists work together, information and knowledge can be exchanged, with each specialist increasing his or her knowledge and skill base. However, it is important to respect disciplinary boundaries and to understand that the specific techniques used for particular children may not be generalized to other children. To assure that techniques and strategies from other disciplines are being used appropriately, close and frequent collaboration between team members is required.

When possible, ECVCs can share information by accompanying other team members on home visits. In turn, other team members can accompany the ECVC on home visits when the ECVC is the primary home visitor.

Approaching Challenges Collaboratively

For instance, parents may want their daughter to communicate by pointing rather than by crying, hitting, or pulling someone to a desired object. The speech language pathologist, who is the primary home visitor, may have shared information with the family about simple communication boards. However, after several weeks of trying a communication board with four simple choices, both the family and the speech language pathologist recognize that it is not working for the child. During a joint visit, the ECVC may realize that the communication board is not effective because of the small size of pictures and the lack of space between them. Together the family, the speech language pathologist, and the ECVC adapt the communication board with choices that the child can see or touch.