1. Visual Conditions and Functional Vision: Early Intervention Issues Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute The University of North Carolina at Chapel Hill Working With Families and Eye Care Professionals Session 1

2. Objectives After completing this session, participants will 1.compare and contrast the roles of different eye care professionals. 2.describe the components of an eye care examination and information families should expect to receive following the exam. 3.describe strategies that TVIs use to support families who seek to understand their children’s visual diagnoses. Visual Conditions 1A Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

3. Objectives After completing this session, participants will 4.discuss factors such as learning styles and language and cultural barriers that affect families’ abilities to access and understand information and describe strategies for providing support to overcome these barriers. 5.describe strategies for facilitating interactions and communication between eye care specialists and families. 6.describe the role of TVIs when working with eye care specialists and other professionals using the transdisciplinary model. Visual Conditions 1B Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

4. Eye Care Specialists Different eye care specialists have different responsibilities and training. Ophthalmologist Optometrist Low vision specialist Orthoptist Optician Ocularist TVIs should assist families and other members of the team in understanding the roles of these different professionals. Visual Conditions 1C Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

5. Components of a Clinical Eye Exam Knowing what to expect may make visits less stressful for families. 1. Gather family and child history 2. Assess external appearance Visual Conditions 1D Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

6. Components of a Clinical Eye Exam 3. Measure visual acuity 4. Observe pupil reaction and movement of eyes Visual Conditions 1E Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

7. Components of a Clinical Eye Exam 5. Examine the interior of eye 6. Evaluate child’s need for corrective lenses Visual Conditions 1F Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

8. Expected Results From the Exam Explanation of child’s visual condition and prognosis Information about secondary visual conditions Prescription for corrective lenses, if applicable Information about size of objects and materials the child can see Stiles & Knox, 1996 Visual Conditions 1G Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

9. Expected Results From the Exam Recommendations for environmental lighting Prescription for medication, if necessary Information about restriction of physical activity, if applicable Stiles & Knox, 1996 Visual Conditions 1H Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

10. Responding to Families TVIs should be aware of the types of responses they can offer families and how their responses may be received. Critical response Clarifying response Empathy response Recommending response Visual Conditions 1I Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

11. Families Need Support Emotional support (e.g., demonstrating positiveness and responsiveness to the family) Informational support (e.g., providing names and locations of specialists and support groups, books, videos, and pamphlets relating to diagnosed condition) Material support (e.g., providing nonoptical devices such as lighting sources, reading stands, dome magnifiers, and sunglasses) Visual Conditions 1J Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

12. How Families Access Information Individuals have different learning styles— global preference: overview of information, followed by individual facts, or analytical preference: presentation of individual facts first, then the bigger picture. Information presented in a manner accessible to the family should result in improved communication that enhances early intervention. Visual Conditions 1K Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

13. Strategies for Helping Families Understand the Diagnosis Introduce families to another family whose child has a similar visual condition. Introduce families to successful adults with visual impairments. Provide simulation activities to depict what the child might see (using vision simulators). Visual Conditions 1L Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

14. Cultural Considerations Guidelines for Interpreters and Translators Use qualified, bilingual, professional personnel. Explain the importance of confidentiality. Explain the importance of neutrality and impartiality in interpreting and translating. TVIs should monitor interactions between interpreters/translators and families. Milian & Conroy, 2001 Visual Conditions 1M Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

15. Cultural Diversity and Visual Impairment Some cultures believe that caring for the child is more important than teaching independence, do not expect adults with visual impairment to hold jobs or expect them to hold only certain jobs, value oral communication over written words, vary in their gender expectations, and ascribe special cultural meanings to specific types of visual impairments. Erin, 2002 Visual Conditions 1N Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

16. Religious Diversity and Visual Impairment Many religions still connect the presence of visual impairments with the idea of retribution for sin. For some families, religious leaders and heads of the family may be the critical decision makers. Many families visit religious healers during their children’s early years. Erin, 2002 Visual Conditions 1O Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

17. Cultural Reciprocity According to Harry (as cited by Warger, 2001), professionals and families must engage in a two-way process to gain understanding and respect for each others’ values. This two- way process is the basis for cultural reciprocity and involves identifying cultural values, determining whether you and the family are aware of each others’ assumptions and how you differ, identifying and respecting cultural differences— explaining and discussing cultural bases of assumptions—and determining the best way to adjust recommendations to match family’s values. Visual Conditions 1P Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

18. Cultural Influences When language or cultural barriers exist, families may have additional obstacles to understanding or accepting the diagnosis of a child’s visual impairment. Use an interpreter with eye care specialists when English is not the family’s primary language. Recognize that different cultures respond differently to diagnosis of visual impairment. This may affect the family’s motivation to treat VI or provide interventions. Visual Conditions 1Q Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

19. Gathering Information Ask the family what they were told. Review existing reports with the family. Take notes while the family talks. Ask the family if they have any questions. Choose topic discussed and share additional information with the family. Identify date and time of the next visit to an eye care specialist. Visual Conditions 1R Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

20. Eye Report Interpretation TVIs may need to identify and discuss the following components of an eye report with families. History/background information Results of the eye examination Implications/treatment plan Visual Conditions 1S Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

21. Preparation for Eye Care Visit TVIs can assist the family in preparing for the exam by formulating questions to ask relating to the child’s etiology, prognosis, and treatment options; anticipating questions that the eye care specialist might ask; and Helping them develop a portfolio of the child’s medical and intervention information. Visual Conditions 1T Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

22. Role of the TVI During Eye Care Visits The TVI can offer to accompany the family to an appointment in order to provide encouragement to the family, share additional information about the child’s visual abilities, interject if communication between the family and the specialist is not going well, and ask for clarification if the family seems hesitant to do so. Visual Conditions 1U Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

23. The TVI as Liaison to Eye Care Specialists TVIs can provide additional information about how children use their vision in different settings across time that will help eye care specialists to better understand the child’s visual condition. By working collaboratively and sharing information, TVIs and medical personnel will be more effective in supporting families and children. Visual Conditions 1V Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

24. Initiating Interactions With Eye Care Specialists The TVI can initiate interactions with eye care specialists through letters of introduction, phone calls, and electronic mail in order to establish collaborative relationships and encourage referrals to early intervention. Visual Conditions 1W Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

25. The TVI as Liaison to Team Members TVIs collaborate with other team members when providing information or asking for input. Visual Conditions 1X Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

26. The TVI as Liaison to Team Members TVIs should share medical information with other team members. Professionals from other disciplines collaborate with TVIs to learn more about how a child’s visual impairment may affect growth and development. Visual Conditions 1Y Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

27. Transdisciplinary Team Success Three elements are necessary for the successful implementation of a transdisciplinary team: collaboration, staff development, and role release. Correa et al., 2002 Visual Conditions 1Z Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

28. Benefits and Challenges of the Transdisciplinary Approach An integrated and holistic approach that facilitates consistency and better communication among families and team members. Difficult to sustain due to additional time needed to coordinate and collaborate with other team members, to train members across disciplines, and to monitor role release. Visual Conditions 1AA Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004

29. The TVI as Liaison to Families Some families report negative experiences with eye care professionals because families were unable to understand eye exam procedures, were devastated by the diagnosis, felt rushed during the visit, or received contradictory information. In such instances, TVIs can follow up with the eye care specialist to gather more information. Killebrew & Corn, 2002 Visual Conditions 1BB Early Intervention Training Center for Infants and Toddlers With Visual Impairments FPG Child Development Institute University of North Carolina at Chapel Hill June 10, 2004