SECTION 2 - What are the Most Common Conditions that Cause Deafblindness?

Over the last seven decades there has been a growing concern about tracking the number of learners with deafblindness, their conditions, their degrees of vision and hearing losses, their educational services, and most recently, their post school outcomes at both state and federal levels. The interest about learners with deafblindness largely stemmed from the Congenital Rubella Epidemic in the 1950's and 1960's that affected many children. These children who contracted Rubella at birth had some degree of vision and hearing loss or had total deafblindness.

As early as 1928, the Census Bureau began reporting the number of individuals who were deafblind. An outgrowth of this reporting base was the National Deaf-Blind Census. The National Deaf-Blind Census requests states to annually count the number of children, birth through 22 years of age who are deafblind and receive deafblind services. Unlike years past, data from the current National Deaf-Blind Census illustrate that the population of learners with deafblindness has changed significantly. More and more states are reporting a significant number of infants and toddlers with deafblindness including those with multiple disabilities due to increases in medical technology, life supporting systems that can be maintained in the home, more effective instructional strategies, and earlier provisions for educational services and family support.

The number of school aged children and youth with deafblindness and their residential, educational, and transitional services are reported on an annual basis. This information is included in the National Deaf-Blind Child Count Summary that is collected, analyzed, and stored at Teaching Research located at Western Oregon State College, Monmouth, Oregon. Members of Teaching Research are responsible for reporting the numbers of learners with deafblindness to the federal Office of Special Education Programs. Every year, there is a Project Directors' Meeting where directors of state deafblind projects meet to receive the latest "child count" data for their respective states and US territories.

What has changed from previous years in collecting child count data is that the amount and quality of data about learners with deafblindness has increased. Currently, states do not only report on the number of learners with deafblindness, but also report the numbers of learners in the following categories:

• the funding category under which the learner is reported (e.g., IDEA Part B, IDEA Part C, etc.)
• age groups of children (e.g., birth to two years, three to five years, six to 11 years, etc.)
• ethnicity
• etiology
• other disabilities
• educational settings birth through age two, three through five, and six through 22 years old
• living settings
• primary classifications of hearing impairment
• primary classifications of vision impairment
• exiting Part B services

A small snapshot of Indiana's Deafblind Census reveals:

• 208 learners with deafblindness between the ages of birth through 22 years with the majority of learners who are between the ages of 6-11 years of age.
• 30 of these learners with deafblindness are a result of complications of prematurity.
• 50 of these learners are the result of post-natal causes and other complications.
• 98 of these learners have physical impairments, 107 have cognitive impairments, 63 have complex health care needs, and 126 have other impairments.

Although the Indiana Deafblind Services Project reports 208 children as deafblind, IDEA Part B in Indiana reports 27 learners who are deafblind. This is not an unusual situation since many states reporting disability categories only allow for one primary disability and one secondary disability. Since many of learners with deafblindness have multiple disabilities, they often are reported under different disability categories, such as severe multiple disabilities or mental retardation.

Collecting information on learners with deafblindness at times seems daunting. The fundamental purpose of these data collection efforts is to ensure that learners with deafblindness, their families, and educators are receiving services, technical assistance, and training on best educational practices to ensure learners with deafblindness receive the "highest quality of services" that exist today. What is most important in collecting and examining the data is to learn (a) who are the learners with deafblindness, (b) where do they live, (c) what type of educational services do they receive, and (d) where do they live, work, and play after they exit their educational programs.

This information becomes more important since the general population of learners with deafblindness has changed significantly over the years. More and mores states are reporting a substantial number of infants and toddlers with deafblindness due to increases in medical technology, advances in instructional technology, "functional definitions for vision and hearing," and the need for educational services and family support. In a recent article about learners with deafblindness, the authors emphasized that the needs of learners with deafblindness are more complex than in previous years, especially in light of the design of early intervention programs, the need for home therapies, the emphasis on understanding brain development, and the impact of cochlear implants (Brown & Bates, 2005).

Additionally, there has been a significant paradigm shift of educational placement from segregated facilities to inclusionary practices. The author notes that these changes have significantly impacted the field of teaching learners with deafblindness. They especially challenge specialists, family members, educators, support providers, and friends to use a collaborative approach, to not only design the best educational program possible, but to keep abreast of the research and newly developing techniques, especially in neurology, multisensory perspectives, and sensory integration issues. This type of awareness and knowledge provides educators, specialists, family members, and learners' opportunities to reflect and self-explore the implications of educational services, living opportunities, community involvement, and vocational experiences for learners with deafblindness to lead successful lives.

There also is a National Registry of Deaf-Blind Youths and Adults (HKNC) that is maintained by the Helen Keller National Center of the number of youths and adults with deafblindness. The purpose of this registry is to gather information about individuals with deafblindness from all ages. The census information is used as a means to identify needs of individuals with deafblindness, provide technical assistance to their families, support service providers, interpreters, and friends, and to provide direct training experiences at the center and at the individual's home. The training and technical assistance is provided by HKNC Regional Representatives and HKNC Affiliates throughout the United States.

Task for Completion and Discussion #2:

To gain a better understanding about learners with deafblindness, read or view at least two of the following: 1) two autobiographical accounts of learners who are deafblind, or 2) view two videos on the lives of learners who are deafblind. You must complete the Reflection: Guiding Questions Form for each of the two reading or viewing assignments listed in this task.

    Resources for Task #2:

    Indiana Deafblind Loan Library: Profiles: Individuals with Deaf-Blindness (1992) manual
    Profile: Hilary
    Profiles: Jennifer and Joshua

    Indiana Deaf-Blind Loan Library: Journeys and Destinations (2004) manual
    Read any of the case studies.

    Indiana Deafblind Loan Library: Supporting Young Adults Who Are Deaf-Blind in Their Communities: A Transition Planning Guide for Service Providers, Families, and Friends      (1995) book
    Read Chapter 4.

    Kansas Deaf-Blind Loan Library:
    Type in URL: http://dbl.kirc.org/
    Type in the keyword: Mind Traveler
    or
    Click on the link: Start Search Mind Traveler Oliver Saks: The Ragin Cajun Usher Syndrome (undated) video BBC World. Check out number: DB#446

    Kansas Deaf-Blind Loan Library: Touching Lives: Portraits of Deaf-Blind People (2002) video Check out number DB#547

    DEAF-BLIND PERSPECTIVES Type in URL: HKNC5LJT@aol.com
    City of the Heart (1966) book
    New York: Taplinger Publishing Company

    Helen Keller Region 5 Loan Library
    Laura J. Thomas, Regional Representative
    20/20 Barbara Walters: Bob & Michelle Smithdas (1998) video

    NAT-CENT NEWS
    Robert J. Smithdas, Editor
    Helen Keller National Center for Deaf-Blind Youths and Adults
    111 Middle Neck Road
    Sands Point, NY 11050
    (Read any autobiographical account or personal testimony in their newsletters.)

For More Information:

If you would like further information about the National Deaf-Blind Count Summary click on one of the resource links below.

The National Technical Assistance Consortium for Children and Young Adults Who are Deaf-Blind
    Type in the URL: http://www.tr.wou.edu/ntac/
    Click on Deafblind Census
    Click on any of these links:

        2001 Census Tables (MSWord format)
        1999 Census Tables (PDF format)
        1998 Census Tables (HTML format)
        1997 Census Graphs (PDF format)

    Helen Keller National Center for Deaf-Blind Children and Youths
    Type in the URL: http://www.hknc.org
    Click on the link: National Registry
    Click on link for: Helen Keller Regional Offices in your area- your regional representative
    Click on the link: Region 1, Region 2, Region 3, Region 4, Region 5, Region 6, Region 7,         Region 8, Region 9, and Region 10
            For Indiana’s Region, click on the link: Region 5

    Indiana Deafblind Services Project
    Type in the URL: http://www.indstate.edu/soe/blumberg/Deafblind
    Click on the link: Making Referrals
    Clink on the link: Indiana Deafblind Census

    DEAF-BLIND PERSPECTIVES
    Type in the URL: http://www.tr.wou.edu/tr/dbp/
    Click on the link: CURRENT ISSUE, Spring 2005, Volume 12, Issue 3
    Click on the link: A Personal View of Changes in the Deaf-Blind Population, Philosophy, and   Needs by David Brown and Elizabeth Bates

    Indiana Deafblind Services Project
    Type in the URL: http://www.indstate.edu/blumberg/db/deafblind.htm
    Click on link: Indiana Deafblind Services Project Loan Library
    Pull down the arrow on the box: Author
    Type in the key word: Norris G. Haring & Lyle T. Romer
    Welcoming Students Who Are Deaf-Blind into Typical Classrooms: Facilitating School   Participation, Learning, and Friendships (1995)
    Pull down the arrow on the box: Author
    Type in the key word: John W. Reiman & Pattie Johnson
     Proceedings of the National Symposium on Children and Youth Who Are Deafblind (1992)