DOCUMENT RESUME

ED 391 298 EC 304 547

AUTHOR Otos, Maurine

TITLE Oregon Project for Services to Children and Youth

with Deaf-Blindness. Final Performance Report.

INSTITUTION Oregon State Dept. of Education, Salem.

SPONS AGENCY Special Education Programs (ED/OSERS), Washington,

DC.

PUB DATE 30 Sep 95

CONTRACT H025A20014

NOTE 56p.

PUB TYPE Reports Descriptive (141)

EDRS PRICE MF01/PC03 Plus Postage.

DESCRIPTORS Agency Cooperation; *Consultation Programs; *Deaf

Blind; Disability Identification; Elementary

Secondary Education; Information Dissemination;

Inservice Teacher Education; *Parent Education;

Preschool Education; *State Programs; *Technical

Assistance

IDENTIFIERS *Oregon

ABSTRACT

This report describes activities and accomplishments

of the Oregon Project for Services to Children and Youth with

Deaf-Blindness, a 3-year federally supported project to ensure

effective educational services for this population and provide

support for families and service providers. The project focused on:

(1) identifying additional children with deaf-blindness and providing

support, counseling, and training to families of all children who are

deaf-blind; (2) providing technical assistance and training for the

service providers involved in the education of these children; (3)

coordinating the activities of regional consulting teachers who

provide consultation and inservice training to families and teachers;

(4) coordinating and collaborating with other agencies; and (5)

maintaining the state count of children and youth who are deaf-blind.

The project served an average of 90 to 110 families and 300

professionals per project year. Individual sections of the report

describe the project's purpose, goals, objectives, accomplishments,

problems and resolutions, and products developed. Appendices include

samples of products developed (project brochures in both English and

Spanish versions, and a pamphlet about Usher Syndrome), advisory

committee meeting agendas, training agendas, and publicity materials.

(DB)

***********************************************************************

Reproductions supplied by EDRS are the best that can be made

from the original document. ***********************************************************************
PROGRAM FOR CHILDREN WHO ARE DEAF-BLIND

CFDA-84.025A - STATE AND MULTI-STATE PROJECTS

FINAL PERFORMANCE REPORT

PROJECT TITLE: Oregon Project for Services to Children and

Youth with Deaf-Blindness

GRANT CONTRACT #: H025A20014

PROJECT START DATE: 10/01/92

PROJECT END DATE: 09/30/95

GEOGRAPHICAL AREA : State of Oregon

PROJECT DIRECTOR:

MAILING ADDRESS:

Maurine Otos

Oregon Department of Education

Public Service Building

255 NE Capitol Street

Salem, OR

TELEPHONE NUMBER: (503) 378-3598

DIRECT SERVICE OFFERED BY PROJECT:

No direct service offered

U.S. DEPARTMENT OF EDUCATION Office of E,ducational Research and improvement EDUCAtIONAL RESOURCES INFORMATION

CENTER (ERIC)

;Am document has been reproduced as

received from the person or organization

onginating it

C Minor changes have been made to improve

reproduction quality

Points of view or opinions stated in this document do not necessarily represent official

OE RI position or policy

TECHNICAL ASSISTANCE OF1-bRED BY PROJECT:

No. of families: 90 - 110 per project year

No. of professionals: 300 average per project year

2

BEST COPY AVAILABLE
I. EXECUTIVE SUMMARY

The purpose of the Oregon Project for Services to Children and Youth with DeafBlindness was to ensure appropriate, effective educational services for children and youth

who are deaf-blind, and provide support for their families and the many service providers

who work with them. This purpose was accomplished by completing the activities

associated with the three project goals:

I. Provide services to children for whom Oregon is not obligated to make available a

free appropriate public education (FAPE).

2. Provide technical assistance to those who provide special education and specialized

services to children with deaf-blindness.

3. Coordinate and manage educational services for children with deaf-blindness.

The State of Oregon, in 1991, mandated that a free appropriate public education (FAPE)

be provided for children birth through age twenty-one. Direct services for all of Oregon's

children and youth who are deaf-blind were provided by various state and local agencies:

Children birth through two received early intervention services through six regional

agencier which contracted with the Oregon Department of Education to provide

services for children with disabilities birth through age two.

Children birth through age five received special education services in public or private

day care centers or preschools and in public kindergartens. The Oregon Department

of Education contracted with regional entities who then subcontracted with local

service providers.

Children and youth six through twenty-one received special education services

through Oregon's public education system. Educational services were provided in

public schools, state operated schools, and other public or private facilities.

Because educational services were mandated for all children, the funds provided through

this grant were used for technical assistance across the following goals:

Goal 1. To identify additional children who are deaf-blind and provide support,

counseling and training to the families of all children who are deaf-blind.

Goal 2. To provide technical assistance and training for the service providers involved in

the education of children who are deaf-blind.

Goal 3. To coordinate the activities of the consulting teachers in each of the six regional

programs who provide consultation and inservice training to families and

teachers of children who are deaf-blind. To coordinate and collaborate with

other national, state, and local agencies. To maintain the state count of children

and youth who are deaf-blind.

+ + + + + + .:
II. TABLE OF CONTENTS

I. Executive 'Summary I

II. Table of.Contents ii

III. Purpose, Goals and Objectives of the Project 1

IV. Project Accomplishments 3

V. Problems and Resolutions 12

VI. Products Developed 14

VII. For Further Information 15

VIII. Appendices 16

A. Samples of Products Developed

B. Sample Advisory Committee Meeting Agenda

B. Sample Training Agenda and Publicity .
III. PURPOSE, GOALS AND OBJECTIVES OF THE PROJECT

The purpose of this project was to provide appropriate, effective services for children and

youth who are deaf-blind in the State of Oregon. The objectives and activities proposed

for this project included two priority areas: 1) services to children with deaf-blindness for

whom Oregon is not obligated to provide a free appropriate education (FAPE); and 2)

technical assistance to those who provide special education and specialized services to

children with deaf-blindness.

The project goals and objectives follow:

Goal 1: Services to children for whom Oregon is not obligated to make available

FAPE.

Objective 1.1: Provide early intervention, including related services, to children who are

deaf-blind from the point of identification through age two.

Goal 2: Technical assistance to providers of education, support staff and families,

thereby increasing their capacity to provide appropriate education and related

services.

Objective 2.1: Provide consultation to classroom staff and support staff who provide

educational services to children with deaf-blindness.

Objective 2.2: Provide local, regional and/or statewide in service training to

classroom staff, related service staff and support staff who provide services to

students with deaf-blindness.

Objective 2.3: Provide training to early intervention interveners.

Objective 2.4: Provide assistance for developing supported education (inclusion)

programs for students with deaf-blindness.

Objective 2.5: Provide technical assistance on needed transition services for students

with deaf-blindness.

Objective 2.6: Provide family training and support.
Goal 3: Coordinate and manage educational services for children with

deaf-blindness.

Objective 3.1: Coordinate special education and related services and activities

required to provide an appropriate educational program for each student who is

deaf-blind from point of identification through age 21.

+ +

2
IV. PROJECT ACCOMPLISHMENTS

Goal 1: Services to childr en for whom Oregon is not obligated to make available

FAPE.

Objective 1.1: Provide early intervention, including related services, to children who are

deaf-blind from point of identification up through age two.

Activities and related accomplishments include:

Activity 1.1.1: Identification of all children through age two.

Children under age two were referred by doctors, nurses, mental health

agency personnel and families to a primary contact agency within each

county. This agency acted as the "fixed point of referral" and was responsible

for coordinating evaluations for eligibility determination. When a child with

suspected deaf-blindness was referred, the fixed point of referral agency

contacted a consulting teacher for deaf-blindness through the regional

program for low incidence disabilities.

Activity 1.1.2: Provision of early intervention and related services to children

from the time of identification through age two.

Children under age two received early intervention services through six

regional agencies that contracted with the Oregon Department of Education

to provide services to children with disabilities birth through age two.

Consultation on the effect of deaf-blindness on the early education of children

was provided to the erly intervention service providers by regional

consulting teachers with expertise in deaf-blindness. Early intervention

providers and early childhood special education providers were invited to

participate in all trainings offered by the project and the Oregon Department

of Education.

The project did not receive adequate funding to implement activity L1.2 as

stated in the original grant proposal. Due to cuts in the original budget,

direct services from early intervention interveners was deleted.

Activity 1.1.3: Evaluate the effectiveness of services to children.

The project staff worked with the Oregon Department of Education Early

Intervention staff to locate documents that identify quality indicators for

young children with disabilities.

3

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Activity 1.1.4: Provide family training and support.

Families received training designed specifically for families through the early

intervention service provided by the six regional agencies. An annual needs assessment

was conducted by the regional agencies to determine the needs of the families in their

immediate regions, as well as across the state. The project provided input into ways to

meet these needs for the families of children with deaf-blindness. This collaborative

effort increased the fiscal and personnel resources available for training to families.

Two families attended the "Wagonwheel" parent/professional conference held in April

1993.

One family (mother, father, and daughter who has Usher Syndrome) attended a three day

Usher Syndrome Family Retreat held in Seattle, WA in September 1995. The retreat was

hosted by the Washington 307.11 Project.

Goal 2: Technical assistance to providers of education, support staff and families,

thereby increasing their capacity to provide appropriate education and

related services

Objtctive 2.1: Provide consultation to classroom staff and support staff who provide

xlucational services to children with deaf-blindness.

Activities and related accomplishments include:

Activity 2.1.1: Consultation to classroom staff and support staff provided by regional and

state operated regional program consulting teachers.

Consulting teachers from each of the six Regional Programs were identified. These

teachers were selected because of their experience in working with children with deafblindness. The consulting teachers, with the assistance of the project staff, continually

shared information with local school district personnel regarding the availability of

consultation services for students with deaf-blindness. Each of-these teachers maintained

a close working relationship with other educational staff (local and regional) who

provided services to children with vision and hearing impairments, providing consultation

on an as needed basis for teachers, families and students with deaf-blindness. Several of

the consulting teachers provided awareness level training to other specialists (e.g., vision,

hearing, speech-language) and school personnel on the characteristics of students with

deaf-blindness. One of the consulting teachers formed a networking group for

professionals within her region to problem solve issues concerning students with

deaf-blindness.

3
Activity 2.1.2: Participation of regional consulting teachers in inservice training

designed to update and improve their skills.

The regional consulting teachers were provided many opportunities to increase their

knowledge and skills in the area of deaf-blindness. The project staff utilized a variety of

resources to accomplish this. Project funds were specifically used to host training

activities and provide funding for travel and registration to attend trainings offered by

other organizations such as the Oregon Department of Education and the TRACES

Project.

In addition to the following trainings, the regional consulting teachers received inservice

training on a regular basis through the bi-annual advisory committee meetings. At these

meetings a one to two hour block of time was scheduled for training on various relevant

topics. Dissemination of current literature was also a priority on each meeting agenda.

In April 1993 a workshop was held for the regional consulting teachers and others (at

their invitation) within their regions. Topics included teaching orientation and mobility,

teaching communication skills, facilitating meetings and consulting skills. The workshop

format and topics were planned by the consulting teachers at their Fall 1992 meeting. All

of the regional consultin,g teachers attended the training.

A two day training was held in May 1995 for the regional consulting teachers and other

service providers from the state. The training, conducted by Jo Moscarro from Texas,

provided training on "Behavior as Communication." The training was attended by the six

regional consulting teachers and an additional twenty service providers.

In collaboration with the TRACES Project, a two day training was held for the regional

consulting teachers on the "Hand in Hand Deaf-Blind Curriculum" which was recently

developed by the American Foundation for the Blind. Jeanne Prickett, one of the

principal authors, conducted the training.

The regional consulting teachers attended the following state, regional or national

trainings offered by other organizations:

One regional consulting teacher attended the "Developing Individualized

Transition Plans for Students with Deaf-Blindness" workshop sponsored by Helen

Keller National Center Technical Assistance Center in Summer 1993.

Two regional consulting teachers attended a one-week training on transdisciplinary

assessment and programming put on by the TEAM Project in California during the

summer of 1993.

Two regional consulting teachers attended a Jan van Dyke training in California in

April 1995.

One regional consulting teacher and a vision specialist from one of the Regional

5
Programs attended a three day class on "Communication of Learners who are

Deaf-Blind" which was held at the 1995 Oregon Supported Education Summer

Institute. Kathleen Stremel from the Mississippi 307.11 Project was the instructor

for this class.

One regional consulting teacher and one parent/service provider attended a one

week suminer institute focused on communication issues for children and youth

who are deaf-blind. The institute was conducted by the Perkins National DeafBlind Training Project and was held in Seattle, WA.

Activity 2.1.3: Dissemination of successful innovative educational approache,7 to

regional consulting teachers.

Materials regarding successful educational approaches were disseminated at each of the

bi-annual advisory committee meeting. Regional consulting teachers who had received

financial support to attend trainings were expected to copy and disseminate notes and

handouts from the training to the other regional consulting teachers. The project

coordinator also collected current information regarding effective practices, available

training opportunities, the activities of other relevant organizations (i.e., TRACES; DBLink; Helen Keller National Center Technical Assistance Center), and other germane

information and disseminated this on a quarterly basis. Copies of some materials were

handed out while other materials were made available for check out from the State DeafBlind Resource Library.

Objective 2.2: Provide local, regional and/or statewide inservice training to classroom

staff, related service staff and support staff who provide services to students with

deaf-blindness.

Activities and related accomplishments include:

Activity 2.1.1: Generation of inservice needs assessment data.

A technical assistance request form was developed and implemented by the regional

consulting teachers in the fall of 1992. Requests came from school staff and families

back to the regional consulting teachers. If the consulting teacher or others within the

region was unable to provide the requested assistance, then the request was forw arded to

the project coordinator and the Regional Program Advisory Council. If the project could

not meet the technical assistance request from sources within the state of Oregon, the

project coordinator contacted other technical assistance agencies (TRACES, Helen ' ller

TAC, American Foundation for the Blind, etc.) for ideas or assistance.

In addition to the project's technical assistance request form, further needs assessment

data regarding the needs of families and school staff serving students with deaf-blindness

was collected from needs assessments done by other state or regional agencies such as the

10
Early Intervention regional providers and the State CSPD team. The project provided

input into ways to meet the needs related to children with deaf-blindness.

Activity 2.1.3: Implementation of the yearly inservice training plan.

Two workshops on teaching students with deaf-blindness were presented at the annual

conference of the Association for Education and Rehabilitation of Visually Handicapped

in October 1992. One workshop focused on teaching communication skills and the other

on integrating students with deaf-blindness in general education settings. Both

workshops received high ratings (9's and 10's on a 10 point scale) from participants and

were well attended.

workshop for consulting teachers and th,:ir guests (teachers andloi arents of children

with deaf-blindness) was held in April 1993. Topics included teaching orientation and

mobility, teaching communication skills, facilitating meetings and consulting skills. The

workshop format and topics were planned by the consulting teachers at their Fall 1992

meeting. All of the regional consulting teachers attended the training.

Few technical assistance requests via the request form were received by the project

coordinator. Technical assistance needs and the process used to gather information

regarding needs at the local, regional and state level will be reviewed during the first year

of the 1995 - 1999 grant cycle.

Objective 2.3: Provide training to early intervention interveners.

Activities and related accomplishments include:

Activity 2.3.1: Development of training content; and

Activity 2.3.2: Implementation of training.

The project did not receive enough funding to implement the activities related to direct

services from interveners (see activity 1.1.2). Therefore, the training activities for

interveners was deleted.

Objective 2.4: Provide assistance for developing supported education (inclusion)

programs for students with deaf-blindness.

Activities and related accomplishments include:

Activity 2.4.1: Assistance to LEA's to develop district and building level teams

for supported education.

The project coordinator worked with LEA's to develop district and building

level teams for including students with disabilities in general education

settings or in community settings.

ii
Activity 2.4.2: Consultation to consulting teachers, classroom staff support staff and

families regarding supported education.

The project coordinator consulted on an ongoing basis with staff and families

of students with deaf-blind ness regarding inclusion in general education

settings or in community s Atings with nondisabled peers.

Objective 2.5: Provide technical assistance on needed transition services for students

with deaf-blindness.

Activities and related accomplishments include:

Activity 2.5.1: Assistance from regional consulting teachers to each student's transition

team.

Consulting teachers provided assistance with transition, as requested, from teachers of the

visually impaired or teachers of the hearing impaired who work with students 14 to 21

who are deaf-blind. Each student's transition team ensured that a) the student is referred

to the county mental health case management program and the Oregon Commission for

the Blind; and b) the student's IEP addressed transition activities related to instruction,

community experiences, the development of employment and other post school living

options. Transition teams ensured that representatives from agencies providing transition

services, including mental health case management arid Oregon Commission for the

Blind attended the student's IEP meeting.

0 jective 2.6: Provide family training and support.

Activities and related accomplishments include:

Activity 2.6.1: Consultation to families from consulting teachers.

Regional consulting teachers were assigned from each regional program. These teachers

were the regional contacts for consultation with families.

Activity 2.6.2: Participation of families in a state-wide family workshop.

Two families attended the "Wagonwheel" parent/professional conference for families of

children who are disabled held in April 1993.

One family (mother, father, and daughter who has Usher Syndrome) attended a three day

Usher Syndrome Family Retreat held in Seattle, WA and hosted by the Washington

307.11 Project. Sharee Ferree, the mother in this family, is a member of the project's

advisory committee.

Activity 2.6.3: Participation of families in relevant inservice opportunities.

Regional consulting teachers and the project coordinator invited parents to the April

8
workshop, as well as all other project sponsored inservice activities.

Activity 2.6.4: Provision of information or resource materials as requested by families.

The regional consulting teachers continuously provided information and resources to

families. The project coordinator provided resources relevant to families to the regional

consulting teachers who then disseminated this information to the families in their

respective regions.

Activity 2.6.5: Referral of parents cnd families to other agencies for services beyond

educational services.

Parents and families are referred to other agencies by the regional consulting teachers.

Goal 3: Coordinate and manage educational services for children with

deaf-blindness.

Objective 3.1: Coordinate special education and related services and activities required to

provide an appropriate educational program for each student who is deaf-blind from point

of identification through age 21.

Activities and related accomplishments include:

Activity 3.1.1: Preparation of grant applications and reports.

All required applications and reports were completed and submitted in a timely manner.

Activity 3.1.2: Authorization of funding to regional programs providing consulting

services to children with deaf-blindness.

Funding for project activities was authorized and project funds were allocated to the six

regional programs so that they could provide technical assistance services.

Activity 3.1.3: Monitoring the implementation of grant objectives and activities.

Activity 3.1.4: Evaluation of services provided to students with deaf-blindness.

Monitoring of project activities has been described in this report.

94-142 compliance monitoring teams from ODE review records and IEP's of students

with deaf-blindness served in LEA's and through regional programs. The project director

and the project coordinator participated in compliance monitoring of districts.

Satisfaction survey data were collected for trainings organized by the project.

Satisfaction levels consistently rated high (averaging 6 7 on a 7 point scale) for the

majority of the trainings held. The survey rated the quality of the instruction, the

applicability of the content related, and the organization and planning of the workshop or

class.

13
Activity 3.1.5: Coordination and implementation of technical assistance activities.

Coordination and implementation of technical assistance activities has been described in

this report.

Activity 3.1.6: Provision of consultative services to state and local agencies.

The project director worked with LEA and ESD staff to improve services through the

regional program.

The project director collaborated with the State Public Health, School Nurses Association

and the Board of Nursing to improve services to students with deaf-blindness who have

severe health needs.

The project director consulted with statewide working groups (deaf-blind, visually

impaired, severe orthopedically impaired, autism, hearing impaired and consulting

nurses) to improve services through regional programs.

The project director is the ditector of Oregon School for the Deaf and Oregon School for

the Blind. In this capacity she directed and coordinated services, as well as provided

consultation to staff.

The project coordinator consulted with LEA, ESD and regional staff to improve services

for students with deaf-blindness.

Activity 3.1.7: Coordination of the State Regional Advisory Council for Regional

Services.

The council meets monthly and assisted in implementing technical assistance plans and

identifying additional leeds. The project director is the state coordinator of the State

Regional Advisory Council and coordinates all meetings.

Activity 3.1.8: Coordination of the State Advisory Committee for Services to Children

with Deaf-Blindness.

The project's advisory committee met two times per year. The project coordinator and

the chair of the committee, with input from the regional consulting teachers, developed

the agenda and facilitated all of the advisory committee meetings.

Activity 3.1.9: Maintenance of the state count for children with deaf-blindness.

The state count of children who are deaf-blind was conducted by December 1 of each

year. The project coordinator worked with the Oregon Department of Education data

management specialist to reconcile the count with the 94-142 and 89-313 annual census.

10

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The count was reported to Teaching Research for inclusion in the National Deaf-Blind

Census in March of each year.

The Oregon count of children who are deaf-blind has been diminishing for each of the

past four years. This is recognized as a problem and will be a high priority during the

first year of the next grant cycle.

Activity 3.2.0: Dissemination of information.

The Deaf-Blind Resource Library was housed at the Oregon Department of Education. In

1993 the project coordinator reviewed all of the available resources, disposing of outdated

materials and adding resources as funding allowed. A system was put in place for

teachers, support staff and families to borrow videotapes, books, and assessment tools.

Regional consulting teachers listed all of the materials on deaf-blindness that are

available in each of their regional libraries. These lists were reviewed at the Spring 1993

advisory committee meeting and used to update regional libraries and gather needed or

missing materials.

With the assistance of the regional consult:11g teachers and DB-Link, an extensive list of

current, desired resources was developed. Most of these resources were purchased and

added to the Deaf-Blind Resource Library.

The regional consulting teachers developed a packet of basic information concerning

deaf-blindness to give to teachers new to teaching students with this type of disability.

The regional consulting teachers compiled information on Ushers screening to

disseminate to parents of children who are deaf. The project coordinator developed a

brochure regarding Usher Syndrome to disseminate via hearing specialists, the Oregon

School for the Deaf, Audiologists, Speech and Language therapists, and school district

and public health nurses.

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V. PROBLEMS AND RESOLUTIONS

1. Identification

The identification of children who are deaf-blind remains a problem in the State of

Oregon. The term "deaf-blind" is confusing to many. To many school district

personnel and regional program personnel, the term is much more narrowly confined

than it is intended to be. In addition, the Oregon Administrative Rules (OARs) stated

a relatively narrow, medically based definition for the disability, rather than a broader

functional definition. Therefore, many children which have both a vision and hearing

loss were not reported because their test results did not fall within the established

range. However, the combination of their losses do cause significant difficulties in

communication and learning. The project has attempted to make school district and

regional program staff more aware of the functional definition of the disability, the

process for referral of children suspected of being deaf-blind, and the services

available through the project. Project brochures have been disseminated to all of the

state's school districts and regional consulting teachers use personal interactions to

inform related service providers and educators of the functional characteristics of the

disability. The topics of identification and functional assessment of children will be a

major focus in the next grant cycle.

2. Technical Assistance to Service Providers and Families

The Regional Program structure in Oregon has many benefits; however, it also has

drawbacks. Contracting the delivery of technical assistance to the six regions in the

state insures a quick response to requests within designated geographical areas. The

six regional consulting teachers are familiar with the children, families and service

providers within their regions. However, inherent in the design of the Regional

Program is the decentralization of deaf-blind services in the state. Few service

providers or families are aware of the state deaf-blind project or the project's efforts

to provide technical assistance across the state. Because of this, there is often a

duplication of efforts while meeting regional needs. Meeting needs at a broader

statewide level may sometimes prove to be more effective and cost efficient. For

instance, communication strategies continue to be a technical assistance need in many

of the regions. Regional consulting teachers continue to expend dollars and time to

meet these needs locally when it would be more efficient to develop an inservice

training which could be offerer' to several regions at one time. The project is in the

process of developing a statewidf; needs assessment process to identify the needs of

service providers and families. These needs will be analyzed across all of the regions

and the most common needs will be met through the delivery of statewide technical

assistance.

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3. Family Support

The families of chilzken who are deaf-blind in Oregon have not had available to them

a forum for meeting with other parents of children who are deaf-blind. In the past,

families were encouraged and supported to participate in statewide activities such as

the Wagonwheel Parent/Professional conference designed for families of children

with disabilities. Families are always invited to participate in project trainings.

Because funding an activity such as a family weekend was cost prohibiti.,e, the project

has made an effort to promote activities in neighboring states and financially support

families to participate. The project coordinator has worked collaboratively with the

coordinator of Washington state's deaf-blind project to include Oregon families in

that project's annual Usher Family Weekend. Information and invitations regarding

California, Idaho and Washington's family activities are actively disseminated

through the regional consulting teachers.

1 3

1 '1
VI. PRODUCTS DEVELOPED

Product

Intended

Audience

Date

Produced Available Dissemination

Project Brochure

(English, Large

Print and Braille)

Families,

educators, related

service providers,

medical

professionals

Spring

1993

Yes (to be

revised in

1995)

Distributed widely

through Regional Program, school districts,

conferences, and inservice trainings on an

ongoing basis

Project Brochure

(Spanish

Language)

Spanish speaking

families and

professionals

September

1995

Yes Distributed widely

through Regional Program, school districts,

conferences, and inservice trainings on an

ongoing basis _Usher Brochure Families and

Professionals

Summer

1995

Yes Will be distributed

through Regional

Program, related

service providers,

school nurses and

psychologists,

audiologists, medical

clinics, Oregon School

for the Deaf

Detailed Participant Notes from

State, Regional or

National Trainings

Regional

consulting teachers

Throughout grant

cycle

No Regional consulting

teachers at each

advisory committee

meeting

Training Video of

hiservice trainings

Families and

Professionals

Spring

1995

No Used for followup

training by regional

consulting teachers

Samples are provided in Appendix A.

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VII. FURTHER INFORMATION

Further information regarding the Oregon Project for Children and Youth with DeafBlindness (Grant Contract Number H025A20014) can be obtained from the following

sources:

Project Director:

Maurine Otos

Oregon School for the Deaf

999 Locust St NE

Salem, OR 97303-5254

Project Coordinator:

Don Thomson

Teaching Research

Western Oregon State ,Thllege

345 N. Monmouth Avenue

Monmouth, OR 97361

State Department Liaison to the Project:

Nancy Anderson

Oregon Department of Education

Office of Special Education

255 Capitol Street NE

Salem, OR 97310

A copy of this Final Performance Report has been submitted to the Educational

Resources Information Center (ERIC) Clearinghouse at:

ERIC/OSEP Special Projects

ERIC Clearinghouse

Council for Exceptional Children

1920 Association Drive

Reston, VA 22091

4. 4. 4, 4. 4. 4. 4. 4. 4.

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VIII. APPENDICES

A. Samples of Products Developed

Project Brochure in English

Project Brochure in Spanish

Usher Syndrome Brochure

Participant notes from Jan van Dyke training

B. Sample Agenda from Advisory Committee Meeting (Deaf-Blind Working Group)

C. Sample of Training Agenda and Publicity

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APPENDIX A

Samples of Products Developed

Project Brochure in English

Project Brochure in Spanish

Usher Syndrome Brochure

Participant notes from Jan van Dyke training

2 I
For More Information... If a child's behaviors lead you to think that he or she might have both hearing and vision impairments, please contact the Oregon Project for Services to Children and Youth with Deaf-Blindness for further information and referral. You may contact the project through the regional program serving the area in which you reside (see insert). 7Ins trochure :s produced and distributed through a joint effort between TRAffs (Teaching Research Assistance to Children and louth Experiencing Sensory Impairments) (cooperative Agreenwnt No. II025C0(i001) and the Oregon Serzwes to Children with Deaf-Blindness (Grant Contract No 1-1025A2(i015) with .fiinding from the LI S Department MIduMion It is the policy of the Oregon Department of Education that dis(rinunation based on race, color, relision, se.i, age, national origin. or disalnlity shall not exist in the institution. This policy embodies and is intended to implement explicit requirements of state and federal law and executive orders of the President m regard to discrimination. It applies to all operatwns that are part of the Oregon Department Of Education Project facilities will meet full requirements of Section 504 of the Rehabilitation Act. Norma Paulus State Superintendent of Public Instruction Oregon 1)epartment of Education Public Service Building 255 Capitol Street NE Salem, Oregon 97310-0203ing peog wayu)..7 m rrir gPi zzaoco 0 t. Tsci 0 to OREGON Project for Services to Children and Youth with Deaf-Blindness Information and Assistance

. for Individuals Who Are Deaf-Blind `?3 UV' MIMI
What iS Deaf=BlindneSs? Deaf-blindness is a loss in both the vision and hearing senses.* This condition af- fects over 9,000 children between birth and 21 years of age in the United States. Deaf- blindness has over 70 known causes; how ever, regardless of the cause, the chal- lenges of deaf-blindness are lifelong. Appropriate education must address both the hearing and vision impairments as well as ally other disabilities that may be present. ( hi ldren who are deaf-blind may exhibit a wide r,nige of behaviors during interac- tions with family, friends, and their environment as a result of the sensory losses. The losses may occur in varying degrees and a child need not exhibit all of the behaviors identified in this brochure to be considered deaf-blind. For example, a hild may show only one of the behaviors that indicates a hearing impairment; but show several of the behaviors that indk ate a vision impairment. The combined ef- fects of both of these sensory losses, even if both are mild, may qualify him or her as deaf-blind. Parents and professionals, upon observ- ing these behaviors, may need assistance in confirming the sensory loss. This bro- chure provides general information on deaf-blindness. Contacting the Oregon l'roject for Services to Children and Youth with Deaf-Blindness is the first step to se- curing assistance. the federal definition of deaf-blindnes: is: "children and 1/ClIth hal mg audibly and visual impairments tlw ,,,,htnalb.n of whhh ,:reates suth <ei.ere COMPEUM,1(1011 ,I,h1 .ilivr drATInental and learnm.1/4: neni'. VW atm ,annot arropriatelu edui Ord without Tecial edu.athqt and related si'rvices,beIA,nd those that uvuld be proAded silely hildren with hear:rig impiunnents, visual impiirmen ts, or wale disabilities, to addres:. their I qui ail owl needs due to these concurrent disabilitws Behaviors that May In cate a Dual Sensory Impairment The following questions are designed to help parents and professionals determine if there is a possibility of a vision and hearing loss. If you answer yes.to ques- tions in both of the following sections, the child may have a dual sensory loss and should receive complete vision and hear- ing assessments. The Oregon Project for Services to Children and Youth with Deaf- Blindness can assist with referrals for assessments. Behaviors that May Indicate a Visual Impairment Does the child or student... often bump into persons and objects? have difficulty walking or crawling snwothly across shadows or areas that look different (carpet or tile)? need to touch or have an object close to the face to identify it? prefer only brightly colored or shiny objects? have difficulty reaching for and grasping objects in a coordinated manner? squint, cover, or close one eve when looking at objects? lose interest or tire easily when performing close tasks? usually turn toward a light source? fail to recogni,e and respond to familiar faces? have difficulty following moving objects with his/her eyes? have eyes that are red or watery, not clear? F11111111111111=111=1111111111111111W diavio s tliat a# Indica a Hearing Impairment Does the child or student... fail to react to loud noises? frequently ask to have things repeated or follow directions incorrectly? seem confused when verbal directions are given in noisy environments such as playgrounds or school cafeterias? indicate agreement (nods head) when vou know he/she does not understand what was said? have difficulty locating the sources of sounds? fail to recognize and respond appropriately to words or common home noises (telephone, door knock, television)? understand better when looking directly at the speaker? Services Provided by the Oregon Project for Services to Children and Youth with Deaf-Blindness Assistance in identification On-site technical assistance (e.g., training, one-on-one consultation, in-service workshops, program design and review) for families, educators, and others based on individual needs. I,ending library with up-to-date books, articles and manuals Access to programs, professionals, and parents who are involved with individuals who are deaf-blind and their families. Newsletters and project mailings for up-to-date materials on deaf-blindness. 9 ;Fil
Para mas informacion... Si los comportamientos de un nitio le hace a usted pensar que el mismo podrfa tener a mbos impedimentos del ofdo y de la vista, favor de comunicarse con los Servicios de Oregon para Nirios Sordos y Gegos para más informaci6n y referencias. Oregon Services to Children with Deaf-Blindness Nancy Anderson Public Service Building 225 Capitol Street N.E. Salem, OR 97310 Ph. (503) 378-3598 Fax (503) 378-4926 1:s1e .tigleto es producido tribuido pot rnetlio tie un esfuerzo conjunto entre TRAC1S (faistencia en la Investigacion de la )otencia para los Mhos y Jóvenes con Inpedimentos Sensoriales Wonbato Coopewtim Nilmero H025C00001) y los Set-vie-jos de Oregon pato Nit-Ns Sordos y Ciegvs (Contrato de Subvencion Nsimero 11025,120015) patrocinado pm- d Pepartamento de IA( atuin d I. rstmlos rodo: los Empleados del proyecto an ernpleados par el I )epor tamento de Iducación de Oregon asegura gut selecciona a su personel sin tomar en cuenta raw, color, origen national, sexo,edad o condición de incapacidad.. Servicios de OREGON para Nifios Sordos y Ciegos Informacion y Asistencia para los Individuos Sordo y Ciegos 1111,' 111111111
Ser Sordo y clego significa la perdlda del sentido del ofdo y de la vista a la vez.* Esta condición afecta a más de 8,000 nirios desde el nacimiento hasta los 21 arios in los Estados Unidos. Ser sorde y ciego tiene más de 70 causas conoddas; sin embargo, lo que sea la causa, los desaffos de ser sordo y ciego son de toda la vida. La educaci6n apropiada tiene que tomar en cuenta los impedimentos del ofdo y de la vista a la vez, asf como cualquier otra deshabilidad que pueda estar presente. Los nirios que son sordos y ciegos pueden mostrar una gran variedad de comportamientos durante las interacciones con la farnilia, los amigos y el ambiente como consecuencia de las pérdidas sensoriales. Las pérdidas pueden occurrir en grados diversos y un nirio no necesita mostrar todos los comportamientos idenfificados en este folleto para que se le considere sordo y ciego. Por ejemplo, un nitio puede mostrar solo uno de los comportamientos que indican un i mped imen to del ofdo, pero muestra varios de los comportamientos que indican un itnpedimento de la vista. Los efectos combinados de estas pérdidas sensoriales, aunque ambas scan leves, pueden cafificarlo como sorde y ciego. Los padres de familia y profesionales, al observar estos comportamientos, pueden necesitar asistencia para cornfirmar las p6rdidas sensoriales. Este folleto provec informackin general sobre ser sordo y ciego. La primera etapa para conseguir la asistencia es comunicarse con los Servicios de Oregon pa ra Nirios Sordos y Ciegos. I a (bp IIU aul federal de tit7 SW do y eiegv abarca "ninos p?venes que firtii impedimentos audiTivos y visuales, ra «anion??? ??,a dela, males etea necesidades tan severas dela «mu nu a, ion, el desarrollo y el tprendizaje qu e no pueden se? ed al ados apropiadamen fe sin la educacion especal y los servulos rriacionados adeauis de los que se suministrariun para los niños con impedimentos del 6ido impedtmentos visuales a deshabilidades severas, para tralar sus tocesidades edwativas debidas a estas deshabilidades CMICUrrentes. Pueden Indicar un Impedtmento Sensorial Doble Las siguientes preguntas han sido diseriadas para ayudarles a los padres de familia y profesionales a determinar si hay una posibilklad de una perdida de la vista y del ofdo. Si usted responde sf a las preguntas en ambas de las siguientes secciones, el nirio puede tener una perdida sensorial doble y debe hacerse unos analisis de la vista y del oido. Los Servicios de Oregon para Nirios Sordos y Ciegos pueden ayudar con referencias para los análisis. Los Comportamientos que Pueden Indicar un Impedimento de la Vista iEl niiio o estudiante... se da golpes a menudo contra personas y objetos? tiene dificultad en caminar o gatear con fluidez a tray& de las sombras o Areas que se ven diferentes (la alfombra o el azulejo)? necesita tocar o tener un objeto cerca de la cara para identificarlo? prefiere solamente objetos de colores vivos o brillantes? tiene dificultad en alcanzar y agarrar objetos en una manera coordinada? entrecierra, cubre, o cierra un ojo cuando esta mirando objetos? pierde el interés o se cansa facilmente cuando esta haciendo tareas de cerca? generalmente voltea hacia una fuente de luz? no reconoce y responde a las caras conocidas? tiene dificultad en seguir con los ojos los objetos en movimiento? ociammommil de claros? Pueden Indicar un Impedimento del Oido zEl nitio o estudiante... no reacciona a los ruidos fuertes? pide a menudo que le repita so que se le dijo

o sigue las instrucciones incorrectamente? parece confundido cuando se le dan instrucciones verbales en ambientes con mucho ruido tales como areas de juego o cafeterias escolares? indica estar de acuerdo (asiente con la cabeza) cuando usted sabe que no en tiende lo que se dijo? tiene dificultad ienlocalizar las fuentes de los sonidos? no reconoce ni responde apropiadamente a palabras o ruidos comunes de casa (el teléfono, el tocar la puerta, el televisor)? entiento mejor cuando mira directamente al chador? Servicos Suministrados por los Servicios de Oregon para Niiios Sordos y Ciegos Asistencia en la diagnosis Asistencia técnica (por ejemplo, entrenamiento, consulta individual, talleras en el area de trabajo, disefio y revision de programas) en donde se enruentran las familias, educadores y otros basada en las necesidades individuales. Biblioteca con libros, articulos y manuales al dfa para prestar. Acceso a programas, profesionales y padres de familia participando con individuos sordos y ciegos, y sus familias. Boletines y correspondencia del proyecto sobre materiales al dia acerca de ser sordo 9 .1 y ciego.
INfORMATiON

AbOUT

USI-IER SyNdRomE

Oregon Project for Services to Children and Youth

with Deaf-Blindness

30
Usher Syndrome is a leading cause of deaf-blindness. It is a genetic disorder which

involves both a loss of hearing, and a progressive loss of vision. While the hearing

loss is usually present at birth, or occurring shortly thereafter, the vision loss begins

later in life. There is no way of determining the exact age of onset or rapidity of the

vision loss.

The vision loss is caused by retinitis pigmentosa (RP), or the degeneration of the

eye's retina. Early symptoms of RP include difficulty seeing at night or in dimly lit

places (night blindness) and a loss of side (peripheral) vision. The vision loss may

be gradual and barely noticeable at first, but most people with RP will eventually be

considered "legally blind."

A person can have Usher Syndrome even though his or her parents or siblings do

not. If each parent is a carrier of an Usher gene and genetically passes this along to

a child, the child receives two of the 'recessive' or weak Usher genes and the effects

(hearing loss and RP) will be present.

WhAT is UshER SyNdRomE?
Over ninety percent of people diagnosed with Usher

Syndrome have one of two main types:

Type I Born with a profound hearing loss

May experience balance problems

Retinitis Pigmentosa (RP) is present

Type II Born with or develop shortly after a mild to severe hearing loss

Do not experience balance problems

Retinitis Pigmentosa (RP) is present

It is estimated that three to six percent of all children who arP deaf have Usher Syndrome.

An equal percentage of children who are hard-of-hearing mhy also have Usher Syndrome.

Usher Syndrome is the cause of more than fifty percent of the cases of deaf-blindness in the

United States, with at least 10,000 people currently diagnosed.

While only 4 people per 100,000 in the general population are currently diagnosed with

Usher Syndrome, physicians and researchers involved with Usher Syndrome claim the incidence is likely to be 9 to 10 people per 100,000. Given the United States' current population, this estimate predicts 25,000 people are affected by Usher Syndrome.

32
There are no treatments or cures to restore or halt an individual's hearing loss or

vision loss caused by Retinitis Pigmentosa. Intensive research is being conducted at

several research facilities in the country to determine the causes, means of prevention, and treatments for Usher Syndrome, as well as other retinal degenerative diseases.

Even though there are no treatments or cures; there is still a lot that can be done for

individuals with Usher Syndrome. With an early diagnosis, individuals and their

families have the opportunity to make psychological, emotional, educational, and

physical adjustments which will help them adapt and pursue a full and satisfying

life.

33

IS ThERE A CURE fOR UShER SyNdRomE?
The first noticeable symptom of Usher Syndrome is a sensorineural hearing loss at

birth or shortly after birth. If the hearing loss is a result of any of the conditions listed

below, the person is at low risk for Usher Syndrome. There is always a small chance

that Usher Syndrome is a secondary cause of the hearing loss, but this is extremely

rare.

Causes of hearing losses which place an individual

at Jow risk for Usher Syndrome

Conductive loss

Kidney disease

Trauma/accident

Genetic deafness 1

Auditory neuritis

Diabetes

Disease (i.e., Meningitis, Mumps,

Scarlet Fever, Measles, Chicken Pox,

Encephalitis)

Rubella (German Measles)

Otitis Media (ear infections)

Scarring of the eardrum

Noise-induced loss

Ototoxic drug therapy

Viral infection

Other known syndromes

(please name

1 The genes for genetic deafness and for Usher Syndrome are different. An individual at risk for Usher Syndrome will probably not have

another family member who b; deaf. unles,; Piet/ too have licher Syndrome

While individuals who have a hearing loss due to any of the above conditions are at

low risk for Usher Syndrome, they may suffer a vision loss for other reasons. This

makes it especially important to have regular, comprehensive eye exams.

Who is AT Risk? 34
Those at risk for Usher Syndrome are usually born with a hearing loss. This loss is

sensorineural, or "nerve deafness." A vision loss due to Retinitis Pigmentosa (RP)

occurs later in the individual's life. Vestibular problems, such as poor balance, may

also be present. By screening for a vision lose, Usher Syndrome can be diagnosed as

early as possible. RP manifests itself through increasing difficulty seeing in the dark

or to the side (peripheral vision).

Following are some behavioral symptoms which may indicate Usher Syndrome and

can be used for initial screening purposes.

Night Blindness

Has difficulty seeing when coming in from bright sunlight

Trips over things when light changes or light is dim

Stays near light in a dark room or at night

Positions self so light falls onlhe face of a speaker

Has difficulty seeing seats or people inside a darkened room (e.g., movie theater)

Avoids conversations in darkened areas

Staggers or loses balance after an oncoming car has passed at night

Has problems reading under some lights or in dimly lit areas Q

WhAT SYMPTOMS SuggEsT UskR SyNdRomE?
Restricted Visual Field

Has difficulty detecting drop-offs (e.g., stairs, curbs, ramps)

Bumps into people, tables, chairs, etc.

Has accidents at mealtime with objects placed to the side (spilled glasses)

Startles easily, "jumpy"

Eyes seem to focus in different directions when looking at some things

Turns head while reading across a page

Uses fingers to mark place while reading

Shows difficulty finding small objects that have been dropped

Doesn't acknowledge another person's hand wave from the side

Is quiet or edges to one side when in a large group

Frequently misses of fails to understand group instruction

Glare Sensitivity

Squints and shades eyes in bright lights or fluorescent lighting

Likes to wear sunglasses inside or outside, but especially in bright sunlight

Appears awkward when leaving a building with bright lights immediately inside or outside the point of exit

Need for Contrast

Has difficulty reading light copies or ditto copies

Can't see stars at night

Often spills when pouring liquids

Acuity Problems

Holds book close to eyes, or bends forward to read

Sits close to blackboard

Balance Problems

Learned to walk late (past 15 months)

Considered clumsy

Loses balance easily in the dark

Can't ride a bicycle or required a long time to learn

Other

Exhibits anxiety in new places

Doesn't participate fully in group activities associated with new situations in the

dark or dimly lit areas (parties, dances, outdoor games)

' Avoids walking or running in unfamiliar areas, especially in the bright sunlight

or darkened areas

Constantly appears to be visually scanning a group 3 6
Early identification of Usher Syndrome is crucial for the individual and his or her

family for many reasons:

1. The individual and his or her parents and teachers will want to consider the eventual vision difficulties while making educational and vocational plans.

2. The individual and family will have the time necessary to gain skills and experience

in communication techniques which will enable him or her to continue to communicate with others even if a severe visual impairment occurs.

3. The gradual decrease in vision may go unnoticed by the individual, who may continue activities (such as driving or working in hazardous conditions) which cannot

be continued safely.

4. The individual and family may choose to seek counseling and support to cope with

the present and prepare for the future.

5. A diagnosis of Usher Syndrome may encourage family members (parents and children) to seek genetic counseling and testing. Usher Syndrome runs in families. Ge- netic counseling and testing may reduce the risk of parents having other affected

children, and the risk of an individual with Usher Syndrome having affected children.

37

Why is EARly IdENTifiCATiON CRUCiAl?
If an individual has a hearing loss and Usher Syndrome is suspected, there are several tests used to determine whether that individual has Retinitis Pigmentosa (RP).

Some tests may be completed by an eye specialist during a regular exam.

Visual Field Test measures side vision using a machine called a Goldman perimeter. It will indicate the field of vision (normal fields = 180 degrees).

Psycho-Physical Test - indicates which colors, if any, an individual can distinguish and the amount of contrast needed to see.

Dark Adaptation Test - determines an individual's ability to see in the dark and

how long it takes to adjust to the dark.

The definitive test for RP, however, is the electroretinogram (ERG), which has

been found to be 95 percent accurate. This test must be administered by an ophthalmologist. To learn more about ERG testing in Oregon, turn to the "Resources"

section.

An ERG measures the electricity given off by nerve impulses in the retina of the eye.

The patient sits in a dark room until the eyes adjust to the darkness. Ore eye is then

patched and the other fitted with a special contact lens. The test, which is painless,

measures the electrical response of the uncovered eye as it is exposed to a flashing

light.

An ERG is necessanj only once in a person's lifetime.

8

Which TESTS ARE USEd fOR DiAgNosis?
All children with congenital deafness should be screened for Usher

Syndromepreferably between the ages of 9 and 12.

Visionthe ability to seeis particularly important to all individuals who are deaf or hard-of-hearing. Children and youth who have a hearing loss, regardless of

whether they are considered at risk for Usher Syndrome, should have regular, comprehensive eye exams by an optometrist or ophthalmologist. If the individual exhibits symptoms of vision difficulties as discussed earlier, it is particularly critical that

testing be done.

While many optometrists or ophthalmologists can perform preliminary screening,

they will need to refer the individual to a retinal specialist for more definitive testing

with the ERG. The eye doctor may not routinely test for field loss. This screening and

others should be included in the basic exam. Always request that the following tests

be given during the complete eye exam:

Dilated eye exam

Visual field test

Color sensitivity and contrast test

Dark adaptation test

In addition to requesting the above tests, provide the eye doctor with any information you have regarding: 1) the individual's history of vision or hearing problems

and the testing which has been done in the past; 2) the family's history of vision or

hearing problems; and 3) symptoms you or others have observed which might suggest vision problems.

Once Usher Syndrome has been diagnosed, the individual and his or her family can

begin planning for the present and the future. For more information on Usher Syndrome, ERG testing, and resources available to assist individuals with Usher Syndrome, contact your ophthalmologist or any of the agencies listed on the next two

pages.

Who Should bE TESTEd?39
Local Resources

Oregon Project for Services to Children and Youth with

Deaf-Blindness

(Contact may be made through the following Regional Programs)

Eastern Oregon Regional Program

(Serves: Baker, Grant, Malheur, Morrow,

Umatilla, Union, and Wallowa counties)

Union ESD

10100 N. McAlister Road

Island City, OR 97850

(503) 963-4106 (V)

Central Oregon Regional Program

(Serves: Crook, Deschutes, Gilliam,

Harney, Jefferson, Sherman, and Wheeler

counties)

Bend School District 1

520 NW Wall Street

Bend, OR 97701

(503) 383-6345 (V /TTY)

Southern Oregon Regional Program

(Serves: Curry, Douglas, Jackson,

Josephine, Klamath, and Lake counties)

Jackson ESD

101 N. Grape Street

Medford, OR 97501

(503) 776-8555 (V/TTY)

Cascade Regional Program

(Serves: Benton, Coos, Lincoln, and Linn

counties)

Linn-Benton ESD

905 Fourth Avenue SE

Albany, OR 97321

(503) 967-8822 (V /TTY)

Mid Oregon Regional Program

(Serves: Marion, Polk, Tillamook, and Yarnhill counties)

Marion ESD

3400 Portland Road NE

Salem, OR 97303

(503) 588-6677 (V/TTY)

Columbia Regional Program

(Serves: Clackamas, Clatsop, Columbia,

Hood River, Multnornah, and Washington

counties)

Child Services Center

531 SE 14th Street

Portland, OR 97214

(503) 280-5840 x. 263 (V)

(503) 280-5675 (TTY)

Lane Regional Program

(Serves: Lane county)

Lane ESD

Educational Support Services

200 N. Monroe

Eugene, OR 97402

(503) 687-3339 (V)

(503) 687-3508 (TTY)

State Resources

Casey Eye Institute (performs all ERG

testing for Oregon)

Oregon Health Sciences University

3375 SW Terwilliger Boulevard

Portland, OR 97201-4196

(503)494-8386 Pediatric Eye Clinic

(503) 494-7672 Adult Eye Clinic

Oregon Commission for the Blind

535 SE 12th Avenue

Portland, OR 97214

(503) 731-3221

Oregon School for the Blind

700 Church Street SE

Salem, OR 97301

(503) 378-3820

Oregon School for the Deaf

999 Locust Street NE

Salem, OR 97303-5254

(503) 378-3826

4 0

RESOURCES
National Resources

Due to space limitation, the following is only a partial list of the m: ily

service and information resources available.

American Association of the

Deaf-Blind (AADB)

814 Thayer Avenue

Silver Spring, MD 20910

(301) 588-6545 (V)

Boys Town National Research

Hospital

Usher Syndrome Project

555 North 30th street

Omaha, NE 68131

(402) 498-6556 (V)

(402) 498-6631 (TTY)

(800) 835-1468 (V/ ITY)

DB-LINK

The National Information

Clearinghouse On Children Who

Are Deaf-Blind

345 N. Monmouth Avenue

Monmouth, OR 97361

(800) 438-9376 (V)

(800) 854-7013 (TTY)

Internet: leslieg@fsa.wosc.osshe.edu

Helen Keller National Center for

Youths and Adults who are

Deaf-Blind

Northwest Regional Office

2366 Eastlake Avenue, Suite 209

Seattle, WA 98102

(206) 324-9120 (V)

(206) 324-1133 (TTY)

NFADB

National Family Association for

Deaf-Blind

111 Middle Neck Road

Sands Point, NY 11050

(800) 255-0411, ext. 275 (V)

(516) 944-8637 (TTY)

NICE)

National Information Center on

Deafness

Gallaudet University

800 Florida Avenue NE

Washington, DC 20002-3695

(202) 651-5051 (V)

(202) 651-5052 (TTY)

Internet: nicd@gallau.gallaudet.edu

RP Foundation Fighting Blindness

1401 Mt. Royal Avenue, 4th Floor

Baltimore, MD 21217

(410) 225-9400 (V)

(800) 683-5555 (V)

(410) 225-9409 (M)

TRACES

Teaching Research Assistance to

Children and Youth Experiencing

Sensory Impairments

Teaching Research Division/WOSC

345 N. Monmouth Avenue

Monmouth, OR 97361

(503) 838-8778 (V)

(503) 838-8773 (V)

(503) 838-8821 (TTY)

Usher Family Support

(A newsletter for families of people

with Usher Syndrome)

c/o Helen Anderson

4918 42nd Avenue South

Minneapolis, MN 55417

41
This brochure was adapted from two brochures previously developed by the Illinois

Usher Syndrome Screening Project and the Alaska Services for Children and Youth

with Dual Sensory Impairments Project.

Additional information was taken from the following articles and resources; all of

which are available from DB-LINK (see National Resources section).

Davenport, S., (1992). Usher syndrome needs document. Bloomington, MN.

Davenport, S., (1994). Usher syndrome: vision and hearing loss. Hereditary Deafness Newsletter of America, vol. 4 no. 1, Summer 1994 1-4.

Walters, J., Quintero, S., & Perrigin, D., (1982). Vision: its assessment in school-age

deaf children. American Amia ls for the Deaf. August 1982,418-341.

This brochure is available in large print or grade 2 braille. Please contact:

Project Coordinator

Oregon Services to Children with Deaf-Blindness

(503) 838-8778 (V)

(503) 838-8821 (TTY)

42

Funding for Oregon's Usher Syndrome Project is through a joint agreement between the

Oregon Services to Children with Deaf-Blindness Project (Grant Contract No. H025A50013)

and TRACES (Teaching Research Assistance to Children and Youth Experiencing Sensory

Impairments, Cooperative Agreement No. H025C00001).
M EMOM EMOMEMOMEMOM EMO MEMO MEMOM EMOMEMOMEMOMEMO

MEMOMEMOMEMOMEMOMEMOMEMOMEMOMEMOMEMOMEMOMEMO

TO: MORS Vision Specialists / Hearing Specialists

FROM: Jay Gense

RE: Jan Van Dijk Workshop May 28.29,30/1995

I attended a conference presented by Jan Van Dijk a couple of weeks ago. Dr. Van Dijk. as many of you

know, has worked in the field of "deaf-blind" since the 1960's, and his theories has served as a

foundation for many of the models in existence today. He is the director of a specialized school for deaf

children in Holland. In particular, he was the creator of the "coactive movement" strategies: (please note,

however, that he never meant for the coactive "stuff" to continue as it has...)

There was a lot of valuable information shared over the course of the three days. Rather than hand out all

my notes, I tried to summarize the "key" points he emphasized. If you want more complete notes, or

want to discuss any of these issues in more depth, please let me know.

It is interesting that many of the "key ingredients" Van Dijk feels to be important for educating kids who

are deaf-blind and/or multi-impaired are very difficult for us to implement in our country, given the current

emphasis on the mainstream model. He discussed this as a problem area.

KEY POINTS FROM THE CONFERENCE

Van Dijk wants people to discontinue only associating him with the "coactive

movement" strategies; he is purporting an educational model based on "attachment"

and "bonding". His new coin phrase is "from hands-on, to hands-off...let kids do

more on their own"

We all know about the "resonance phenomenon" level of the Van Dijk

strategies...simple movement with a kid, stop, wait for a signal to continue, then

continue. He spent quite a bit of time again emphasizing the importance of this

sequence, creating the "mismatch" for the student so they learn that they must do

"something" to communicate their wishes.

Some new research is being released that shows that some forms of stimulation on

light sources is not simply self-stimulatory behavior nor autistic behavior, but rather

is neurologically linked to the deprivation of sight.

Head balance and vision are "brother and sister". We must be more aware of

providing appropriate activities to encourage upright posture and upper trunk

control for kids who are blind.

Teachers must constantly pursue strategies that allow the child to make more

decisions.

Some new research (take this for what it's worth):

65% of non-disabled kids attach or bond with their parents

27% of disabled kids attach or bond with their parents.

4 3
It is imperative that 1 or 2 people completely bond with a student; they must feel

for, care, communicate with and fully understand the child.

Teachers and parents must always be asking "how can the program be designed to

build upon the child's memory skills"?. They must have something to help them

organize their memory; i.e. calendar systems, memory books, etc.

There actually is a weak correlation between intellect and communication ability.

Van Dijk jokes about a good teacher sometimes being a "lazy" teacher...meaning

don't rush, don't force...wait the student out. Sometimes we think too much in the

medical model, assuming that we can "fix" it.

Van Dijk believes that the primary goal of any early intervention program should be

to encourage appropriate bonding between child and parents. Bonding occurs most

often because parents respond appropriately with their children. But this

appropriate response is VERY difficult with a child who is blind or deaf-blind,

because the cues they give are very subtle.

In Holland, a complete functional vision assessment includes:

visual history

measurement of visual acuity

measurement of visuJ fields (particularly use the

Goldman)

microscopic inspection

assessment of ocular motility

assessment of color vision ( a new test is being developed

in Finland presently)

referral to a LoV Vision Clinic if necessary

By the age of 5, the glasses should be comfortable to wear.

You don't see with your eyes, but with your brain. Sometimes kids are happy with

a "blurred" picture, and we must help change that.

Van Dijk feels that good teachers and parents simply have "IT"...h9ve the natural

ability to teach, to respond appropriately with kids. And to know when to demand

a little "more" . When working with students, always look for the people who have

"IT", and help them to better understand the student.

"Mismatch" stimulates the brain to work. They are anticipating one thing, but

something else happens.
APPENDIX B

Sample Agenda from Deaf-Blind Working Group Meeting (Advisory Committee)

.4. : 4. 4,:

4 5

18
Oregon Project for Services to Children and Youth with Deaf-Blindness

Deaf-Blind Working Group Meeting

April 25, 1995

9:00 am - 4:00 pm

Oregon School for the Deaf

Directors Conference Room, Nutrition Services BUilding -:..... 9:00 Greetings!

. Introductions

Stories about Kids (or other news from your region)

Terry

9:45 What are we doing from 1995 to 1999?

Review final copy of the new grant application

Update on federal action on grants

New directions for services in Oregon

A quick look at the Evaluation section of the grant application

Paddi

Terry

10:30 How many kiddos do we have in Oregon?

Final numbers on 1994 Child Count

Where are the changes?

Paddi

--...N- --:,...,--. -,i,. -11i00,

.:,,,v,,,,.. Break .?..: ., &. . -...k-:.;,,, , ,,,,4.,::-rii&V-:, ; :,I:-.= s, - .', .- .,-.i... :,i.t&:::;=*.:4 77z.f'.1,r...,0;i..; .v ati-, t:,-..., ,:.:,.. ,Lo_.:;:q*, i"-:'...,Z:vw:::, .. ,-.1,:;,:;:!

11:15 What's happening on the training scene?

Information on upcoming trainings (Oregon, TRACES Western

Region, national)

Brief reports on training recently attended

Paddi

11:45 The Oregon Deaf-Blind brochure unvieled

Identify target locations for dissemination of brochures

Paddi

..,.

: 12:00 .- L.unch (at OSD, tickets will be sold for :75':durinO:morong.bieak)- t .'... , :;z7,,,,,,.
Oregon Project for Services to Children and Youth with Deaf-Blindness.

Deaf-Blind Working Group Meeting

April 25, 1995

9:00 am - 4:00 pm

Oregon School for the Deaf

Directors Conference Room, Nutrition Services Building

1:00 They're baaaaack...revisiting the Regional Program Resources lists

Look through resources brought and recommended by WG members

Make & prioritize "wish list" of new resources

Terry

1:45 Update on Usher Syndrome activities

Progress on the Oregon Usher brochure

News about a TRACES Usher Syndrome workshop

Jay

Paddi

2:00 Who should we send to the Perkins Summer Institute?

Select the two Perkins funded participants

Discussion and selection of additional participants funded by the

project

3:00

Paddi

Terry

, ...1,10. .0.17S ,:; 9

VVV

ilkx;y1446:tyr,t4:47;41::-

1st Oregon viewing of "You and Me" video

Meet Riley Ford, his mom, peers, teachers, and staff at his

neighborhood school

Paddi

3:30 Other items we really should talk about... Terry

4:00 We've put in a hard day let's call it quits! Terry
APPENDIX C

Sample of Training Agenda and Publicity

4 4.

19
WNW OPPORTMlitrf IN ORION PROIT537MAISAM RAVI AWED SOW # 77/T aff0# Iraffel laf ROM/ T' Cl/AWIEN AV MTN MTN PM,-81/NPNEff SAW "NW /Os Date and Location Training Activity Participants Follow-up Activities April 27 28 Tucson, AZ AZ School for the Deaf and the Blind "From Grief to Growth" A two-day workshop presentation by Gwen Whiting in association with Kenneth Moses. An exploration of issues related to grief and coping specifically related to families and professionals involved in the care of children with special needs. Participation will be very interactive with presenter and the other 120 parents, teachers and service providers in attendance. Family members and service providers Project will pay stipends for one family member and one professional Participants will disseminate materials and provide 30 - 45 minute presentation to Deaf-Blind Working Group; Working Group will brainstorm ideas for infusing content into current services. April 28 30 San Diego, CA Clarion Hotel "Assessment and Development of Communication Skills for Individuals who are Deaf-Blind" Jan van Dijk will present during a two-day workshop. An additional half day workshop will focus on rare genetic syndromes and advanced assessment techniques. Family members, teachers, service providers Project will pay stipends for two individuals Participants will develop action plans outlining their plans for implementing the training content; follow- up needs, and the expected impact the training will have on children. Participants will disseminate materials and provide 30 - 45 minute presentation to Deaf-Blind Working Group; Working Group will brainstorm ideas for infusing content into current services. May 4 5 Portland, OR Child Services Center "Behavior as Communication" Jc Mascorro will present strategies to assist service providers as they work with individuals who are deaf-blind and demonstrate behaviors which appear to interfere with the learning process. Forty - fifty teachers, family members, service providers from Oregon, Washington, California, Idaho Project will pay stipends for ten individuals Participants will: 1. Identify three strategies learned during the workshop 2. Develop a plan for implementing these three strategies 3. Identify areas of need (i.e., follow-up assistance) for implementation 4. List their preferred method of follow-up (i.e., site visit, phone consultation, video) 4 3 jtJ
Date and Location Training Activity Participants Follow-up Activities May 5 - 6 Salt Lake City UT John A. Moran Eye Center "Usher Syndrome Screening Workshop" Dr. Sandra Davenport will present during a two- day workshop on the genetic causes of Usher Syndrome, the symptoms and educational implications, and statewide Usher Syndrome screening systems. State or private agencies/ representatives affiliated with Usher Syndrome TRACES will pay stipend for one individual Participants will develop an action plan for the dissemination of the workshop information and written materials. The action plan will also identify steps for further investigation into the need for or feasibility of a statewide screening process. July 21 - 23 Portland, OR Lewis and Clark College "Second Annual International CHARGE Syndrome Conference for Families and Professionals" This three day conference will include information on CHARGE Syndrome, behavioral and management issues, educational planning, and many pertinent workshops. Families of children who have CHARGE Syndrome and inter- ested professionals Project will pay stipend for one family TBD July 23 27 Seattle, WA University of Washington "Communication with Learners who are Deaf-Blind" Perkins Nat'l Deaf-Blind Training Project This five-day summer institute will provide a comprehensive analysis of the communication needs of learners who are deaf-blind. Seven teachers and service providers from Oregon 2 paid by Perkins 5 paid by project (2 grad credits) TBD with the Perkins Project July 31 - August 2 Bend, OR "Increasing Peer Interactions and Social Networks" Oregon Supported Education Summer Institute Kathleen Stremel will present during this three day workshop on inclusive instructional design for students with severe needs. Teachers, service providers Project will pay stipends for ten individuals TBD Sept 29 Oct 1 Seattle, WA Location: TBD "Usher Syndrome Family Retreat" For two and a half days, children who have Usher Syndrome and their families will learn and laugh together. Activities will be informational, include formal and informal networking opportunities, and be interspersed with fun and games. Members of Seattle's adult deaf-blind community will also be involved as friends, supporters, and role models for the children and families, Families of children who have Usher Syndrome Project will pay stipends for three families TBD 51
The Oregon Project for Services to Children

and Youth with Deaf-Blindness

presents a two day workshop

BEHAVIOR AS COMMUNICATION:

Sirafe-iet 'to ASsist Direct Service

- ,;

ers when -Chalienked tO Teach

ilejren who

xpqrrenc6 Peaf-Blindness

Presented by:

jo Mascorro, M.Ed.

Consultant for Education

San /Antonio, Texas

May 4th and 5th, 1995

Child Service Center

Portland, Oregon
Consultant's summary of workshop

This presentation will provide the direct s .1rvice provider

with strategies to assist individuals who are deaf-blind and

demonstrate behaviors that appear to interfere with

learning. Given the unique challenges presented by the dual

sensory impairment, staff must be acutely aware of how

their behaviors may in fact, contribute to the crisis of an

excalating behavior demonstration.

This two-day workshop will address the following issues:

Where to begin

Behavior as communication

Role-modeling appropriate intervention strategies

Developing schedules and routines

Developing an appropriate behavior management plan

It is critical we recognize that behavior is most often learned

based on our experiences in relating to our environment

and interacting with others. The ability to make someone

change their behavior is extremely difficult, if not impossible!

We do, however, have the ability to influence change in

behavior based on how we qualify our expectiations and

teach appropriate alternatives to inappropriate behavior

demonstrations.

Lo
DATES AND TIMES

May 4 and S, 1995

9:00 am - 4:00 pm

LOCATION

Room C-121

Child Service Center

53 1 SE 14th Street

Portland, OR 97214

503.280.5840 ext. 263

PARKING

Free parking available at the Child Services Center or on

nearby streets

OTHER DETAILS

*Morning and afternoon refreshments provided

Several restaurants are located nearby for lunch

Assistance with hotel accommodations gladly provided

CONTACT

Paddi Henderson

503.838.8778

503.838.8150 (FAX)
BEHAVIOR AS COMMUNICAMON:

Strategies to Assist Direct Service Providers

when Challenged to Teach Children who

Experience Deaf-Blindness

INSTRUCTOR:

Thursday, May 4th

AGENDA

Introduction

Pre-test

Where do we begin?

yourself

environment

instructional strategies/expectations

behaviors

BREAK

Things to consider

Activity

What's the point?

LUNCH

Behavior as communication

Schedules and routines

Making it connect!

Questions...attempts at responnes

Prepare for tomorrow

t41' 3)1 e e

,\113:f

Jo Mascorro, M.Ed.

M Dr'

Friday, May 5th

AGENDA

Where were we?

Applying the format

Avenue to experience

Meaningful programs...how do we

know?

BREAK

Taking a risk

Behavior management plans

Video

LUNCH

Working with the family

Taking another risk!

Quality of life issues

Community experiences

Questions...attempts at responses

Post-test

5 0