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Una publicación sobre discapacidades visuales, y sordera y ceguera, para familias y profesionales.

Winter 2000 Table of Contents
Versión Español de este artículo (Spanish Version)

By Dr. Charity Rowland, Co-Director, Center on Self-Determination
Oregon Institute on Disability and Development
Oregon Health Sciences University

Bringing It All Back Home is a project at the Oregon Health Sciences University's Center on Self-Determination, a program of the Oregon Institute on Disability and Development. The project is funded by the U.S. Department of Education. The goal of the project is to develop a set of materials designed by and for parents of children who are deafblind to evaluate their children, to establish intervention priorities for home and community, and to ensure successful transitions from one school or classroom to another. The project targets 3-12 year old children who are deafblind and involves parents as partners in model and product development and in field-testing efforts.

CURRENT ACTIVITIES

A team of parent consultants from Oregon and Washington is currently working on assessment and evaluation issues. The team has provided input into these issues and we are also collecting input through the World Wide Web. The team is seeking input on these issues from other parents of children who are deafblind. Our web site address is: http://www.ohsu.edu/xd/education/library/index.cfm

This web page describes the project and has a link to a form for submitting the ideas of parents on the assessment and evaluation of their children. The form is provided in English and Spanish. Input received through the web site will be reviewed by our parent consultants and by project staff. If you are a parent, we are interested in your ideas on the assessment and evaluation of your child. Also, if you know other parents who might like to provide input, please pass this information along to them.

PARENT OPINIONS ON ASSESSMENT AND EVALUATION

So far, the major opinions that have been expressed by parents regarding assessment and evaluation are summarized below. These ideas will be integral to the development of assessment instruments which the parent consultants are working on now.

  • Important behavioral domains to assess are: communication skills, perceptual capability, tactile defensiveness, tactual learning, social development, gross/fine motor development, and cognitive development.
  • Specific information that should be gathered abut the child includes: preferences, effective rewards, habits and routines (sleeping, feeding, etc.), recent progress, community-based experiences, ability to adapt to changes and transitions, motivation/initiative to explore the environment, sources of frustration and how the child expresses frustration, health status, home life, and responses to music/rhythm/voice/movement.
  • The role of parents in the assessment/evaluation process involves: providing general information about deafblindness, providing documentation of the child's learning, sharing goals for the child, informing the team of the child's progress, and helping the team to recognize the child's skills.
  • Suggested formats/styles for evaluation include: developing a formal parent report (just like professional members on the educational team), developing guidelines for categorizing behavior so parents can present their information in an organized way, use of anecdotal information to highlight special skills, starting with the concept of the overall goal being to increase the child's independence, including an executive summary of the child's skills and behaviors, use of videotapes of the child, and use of life-print memory/picture books.
  • Appropriate contexts for evaluation include: the home (especially for younger children), the community, and unfamiliar as well as familiar environments.
  • Measurement ideas include: conducting several administrations of assessments within a few months, establishing a baseline and then a standardized form to collect supportive data over time, providing a scale that is not age-based or IQ-based.

FUTURE ACTIVITIES

In future years, we will be seeking input on setting intervention priorities and transition issues. Another avenue for family involvement in this project will occur during our field-testing phase, when we will be seeking families to use and evaluate the materials developed through the project. When we are ready for field-testing we will contact the coordinator of your state deafblind project, and will also make an announcement on our web page. We also welcome your input into other aspects of the project at any time. You may contact project staff at:

Dr. Charity Rowland or
Phillip Schweigert, M. Ed.
OHSU Center on Self-Determination
3608 SE Powell Blvd.
Portland, OR (503) 232 - 9125

DR. Harvey Mar
Developmental Disabilities Center
St. Luke's - Roosevelt Hospital
428 W. 9th Street
New York, NY 10019
(212) 523 - 6235