Transition Planning Guidebook for Young Adults Who Are Deafblind

Transition Planning Guidebook for Young Adults who are Deafblind

New York State Transition Partnership for Children

and Youth who are Deafblind

Transition Planning Basics

What is Deafblindness
Introduction to Transition
NYS Vocational Rehabilitation Agencies
Establishing a Multidisciplinary Team
Developing an Individualized Transition Plan
Parent Perspectives
Modes of Communication
Assistive Technology
Communication Access Supports
Self-Determination
Travel Skills
Pre-Vocational Development
Independent Living Skills
Housing Opportunities
Education & Transition Options
Vocational Training & Employment Options
Postsecondary Education Options
Resources

Collaborating Partners

Helen Keller National Center (HKNC)

National Technical Assistance Consortium for Children and Young

Adults Who Are Deafblind (NTAC)

New York City Department of Education - District 75

New York Parent Network (NYPN)

New York State Commission for the Blind and Visually Handicapped (CBVH)

New York State Education Department Office of Vocational and Educational Services for Individuals with Disabilities (NYSED-VESID)

New York State Office of Mental Health (OMH)

New York State Office of Mental Retardation and Developmental Disabilities (OMRDD)

New York State Technical Assistance Project Serving Children and Youth who are Deafblind (NYSTAP)

Contributing Authors

Madeline Appell
Sharon Brown-Levey
Clara Berg
Patricia Chrosniak
Mary Conlon
Anthony D’Angelo
Nancy Godfrey
Margaret Groce
Marjorie Harrington
Judy Herlihy
Elga Joffee / William Kane
Susan Lipkowitz
Paul Molloy
Sam Morgan
Susanne Morgan
Laurie Munro
Emily Pfohl
Lauretta Randolph
Robert Ross
Dorothy Steele
Mary Ann van Alstyne

Special Recognition

New York State Transition Partnership

Editor

Susanne Morgan

This publication was funded through grant number H326C030033-04

By the U. S. Department of Education, OSERS, Office of Special Education Programs

Winter 2005

Preface

The completion of high school marks the beginning of adult life. The entitlement of education and services ends and a world of opportunities opens to students and their families. For most, the transition into a vocational training program, postsecondary education or the world of work, is a semi-seamless process. However, for students with disabilities, that is not always the case. Much more advanced planning is necessary in order to ensure that the appropriate services are in place that will support the student in achieving his or her desired goals.

For students with deafblindness (combined hearing and vision loss) this time is even more critical. It is often difficult to identify the appropriate professionals who possess the necessary knowledge and skills to deliver seamless services to these young adults and their families. A comprehensive, multidisciplinary team of professionals must be established in order to support the individual and his family throughout the process.

This Guidebook will provide information on the overall transition process for young adults who are deafblind. Deafblindness and the varied community of deafblind individuals is defined in Chapter 1 – What is Deafblindness, with more specific information unique to deafblindness, such as communication styles, various assistive technology that is available and assorted professionals that provide communication access supports, in Chapter 5 (5A – Communication, 5B – Assistive Technology and 5C – Communication Access Supports).

Critical components of transition planning, such as an introduction to transition, key agencies involved in the transition process, establishing a multidisciplinary team and how to develop an individualized transition plan are explained, in depth, in Chapters 2 (Introduction to Transition) and 3 (Critical Components of Transition Planning). Once a multidisciplinary team is in place you will be able to develop a comprehensive transition plan that will include all of the critical independent life components that will support a young adult who is deafblind. Those components include self-determination, travel skills, pre-vocational development, independent living skills, and housing opportunities and can be found in Chapter 6 – Independent Life Skills.

Knowing that parents and families are at the center and are the driving force behind successful transition planning you will find helpful information written by parents for parents in Chapter 4 – Parent Perspectives. As the team begins to plan with the student and family they will be able to determine long-term goals relating to postsecondary education and employment options. These topics as well as vocational training options can be found in Chapters 7, 8 & 9.

At the end of the Guidebook you will also find charts describing various combinations of hearing and vision loss that would classify a student as deafblind, key players throughout the lifespan of a deafblind student and various resources to support the student, his family and the team.

Transition planning, like building a house, is a seamless process when all of the right tools are in place. Whether you are a consumer, family member or professional this Guidebook will help you build your toolbox so that you are full prepared to transition or help someone who is deafblind transition smoothly from school to adult life.

Statement of Purpose

The New York State Transition Partnership

The New York State Transition Partnership (NYSTP) was established to assist young adults who are deafblind to transition from school to the adult world as seamlessly as possible. In 1993, the Commission for the Blind and Visually Handicapped (CBVH) responded to a request for proposals from the Helen Keller National Center - Technical Assistance Center (HKNC–TAC) in order to establish “An Interagency Approach to Achieving Person-Centered Outcomes” for individuals who were deafblind between the ages of 14-26. New York was one of ten states throughout the country that was selected and became a model in the seamless delivery of transition services to young adults who are deafblind.

The intent of the HKNC-TAC model was to form a State Team made up of representatives of various New York State Agencies that would provide support to Regional Teams throughout the state who were working directly with individual students. Initially, the State Team was comprised of at least one parent, one consumer, and representatives of the Commission for the Blind and Visually Handicapped (CBVH), the Office of Vocational and Educational Services for Individuals with Disabilities (VESID), the Office of Mental Retardation and Development Disabilities (OMRDD), and the State Education Department Resource Center for the Visually Impaired. It has since been expanded to include representatives from the Regional Teams, the New York City Department of Education, Helen Keller National Center, the Office of Mental Health, and college programs whose focus is on preparing teachers to work with students who have hearing and vision impairments.

The first set of Regional Teams was formed through a request for proposals process, which sought applications from various groups, and individuals who were providing services to deafblind young adults. Four regional teams were formed in Rochester, Rome/Syracuse, the Capital District and New York City. Membership closely modeled that of the State Team and also included representatives of schools for the deaf, individual school districts, and the local Board of Cooperative Education Services (BOCES).

The State Team and Regional Teams received comprehensive training on deafblindness, transition planning techniques, and team building skills. From this they then developed individual team mission and value statements. These statements provided the guiding philosophy of each team and helped them stay focused on assisting students in achieving successful outcomes as they transitioned from school to adult life. The team building skills helped to ensure that all members had the opportunity to contribute to the team, that meetings were run effectively, and that everyone understood how to reach consensus on all issues.

Once the teams returned to their respective regions, each team identified individual students who needed a collaborative approach to transition planning. They then formed a smaller team around each student in order to support successful outcomes in school, their community, and employment. Those teams included the student, family members, individuals working directly with the student, and anyone else who was providing support to the student. This team worked with the student to identify his or her goals for the future, the necessary services and supports to help the student reach those goals and the barriers that may exist that would prevent the student from achieving success. The Regional and State Teams remained available to address systemic issues, and provide technical support, information and training when necessary and were available if the local team could not resolve an issue effectively.

To assist teams in understanding the compounding issues for transition-age young adults who are deafblind, the State Team periodically would provide on-site, team-specific training. These topics have included: understanding deafness, blindness and deafblindness; the psychosocial impact of deafblindness; successful communication strategies; adaptive technology; audiology and low vision services; placement techniques; person centered planning techniques; IEPs and requirements of the Individuals with Disabilities Education Act; and other topics requested by participants. With the support of the New York State Technical Assistance Project (NYSTAP) and various state agencies, training has been provided locally or at a central location where all teams had an opportunity to gain skills and network with one another.

The New York State Transition Partnership is in existence today and maintains its mission to provide seamless services to transition-age young adults who are deafblind. Since its inception, additional teams have been formed to cover the outer corners of the state. Regional Team membership has also been expanded to include representatives of private rehabilitation agencies, independent living centers and others as deemed appropriate based on the needs of the focus student. Currently, there are seven Regional Teams located throughout New York in Buffalo, Rochester, Central New York (Syracuse), Mid-Hudson Valley, Northeast New York (Albany), Long Island and New York City. If you would like more information on the State and Regional Teams refer to the Appendix at the end of the Guidebook.

Table of Contents

PART I - DEAFBLINDNESS

Chapter 1 – What is Deafblindness?

PART II – TRANSITION PLANNING

Chapter 2 – Introduction to Transition

Chapter 3 – Critical Components of Transition Planning

3A - New York State Vocational Rehabilitation Agencies

3B - The Process: Establishing a Multidisciplinary Team & Developing an Individualized Transition Plan

PART III – FAMILY INVOLVEMENT

Chapter 4 – Parent Perspectives

PART IV – TRANSITION NEEDS OF DEAFBLIND YOUNG ADULTS

Chapter 5 – Communication

5A - Modes of Communication

5B - Assistive Technology

5C - Communication Access Supports

Chapter 6 – Independent Life Skills

6A - Self-Determination

6B - Travel Skills

6C - Pre-Vocational Development

6D - Independent Living Skills

6E - Housing Opportunities

PART V – TRANSITION OPTIONS

Chapter 7 – Education & Transition Options

Chapter 8 – Vocational Training & Employment Options

APPENDIX

A – Resources: New York State & National

B – NYSTP State and Regional Team Membership

C – Defining Deafblindness: Degrees of Vision and Hearing Loss

General
Specific
Advanced

D - Person Centered Planning Essential Elements

E - The NYS Deafblind Agreement

F - Key Players Throughout the Lifespan

G - Deafblind Related Etiologies and Syndromes

REFERENCES

BIBLIOGRAPHY

PART I

DEAFBLINDNESS

Chapter 1 – What is Deafblindness?

OVERVIEW

I. DEFINITION

The term deafblind is used to describe a child or adult who has a combined hearing and vision loss. These individuals have varying degrees of residual hearing and vision and utilize multiple and varied modes of communication.

II. TRANSITION FOR YOUNG ADULTS WHO ARE DEAFBLIND

Students with progressive vision and hearing losses may experience a significant change during their junior high and high school years. As students begin to age and make plans for the future they begin to become more independent and are exposed to new environments, particularly to the world of work.

III. CRITICAL COMPONENTS

Since there are no normed assessments on students who are deafblind in which to compare to, a portfolio of the student’s abilities and preferences is important in providing a comprehensive profile of the student and a plan for implementation.

IV. PROCESS

Students who are deafblind should have on-going assessments. Changes in vision or hearing will significantly impact the student’s interaction with the world and daily learning experiences.

V. KEY PLAYERS

Depending on the age of the student, various professionals will be a part of the educational team, such as doctors, audiologists, optometrists, general and special education teachers, occupational and physical therapists, speech and language pathologists, orientation and mobility instructors, etc.

Chapter 1 - Deafblindness

I. DEFINITION

The term deafblind is used to describe a child or adult who has a combined hearing and vision loss. This is also referred to as having dual sensory impairments. The range of communication styles and cognitive abilities within this population is greatly diverse. These individuals have varying degrees of residual hearing and vision and utilize multiple and varied modes of communication. There are very few students who have absolutely no residual vision or hearing. In fact, most students have some level of usable hearing or vision, which will significantly impact his or her learning.

The causes of deafblindness are many and can be congenital (present at birth) or adventitious (acquired). Major causes of congenital deafblindness include genetic or chromosomal abnormalities, intrauterine (pre-birth) infections, and prematurity. Acquired hearing or vision losses can be due to trauma, ototoxic drug complications or unknown causes. Some students who are deafblind will have stable vision and hearing while others have syndromes or conditions that cause progressive losses. In addition to hearing and vision loss, many students have developmental delays, which may be cognitive or orthopedic. While some syndromes are known to cause dual sensory impairments and are more commonly occurring within the deafblind community (i.e. Congenital Rubella Syndrome, Usher Syndrome, etc.), the etiologies are still unknown for a great number of students with deafblindness.

CAUSES OF DEAFBLINDNESS

I. Pre-Birth Onset

Genetic- There are more than thirty types of hereditary deafblindness that have been identified. Common genetic syndromes are Usher Syndrome, CHARGE Syndrome, Stickler Syndrome amd Leber’s Syndrome.

Congenital infections- Infections can either be viral or protozoal in nature. Common viral infections are Congenital Rubella Syndrome (CRS), herpes virus, Cytomegalovirus (CMV), varicella, etc. An example of a protozoal infection is toxoplasmosis.

Ototoxic drugs- Maternal ingestion of: choloroquine, quinine salicyclates, thalidomide, aminoglysocide antibiotics (streptomycin, kanamycin, gentamicin) can cause damage to the developing fetus and result in a combined dual sensory impairment.

Cognitive Processing Disorders – Cortical Visual Impairment (CVI) or Central Auditory Processing Disorder (CAPD) are two types of cognitive processing disorders. This is where the eye and the ear appear healthy but processing center in the brain does not interpret the incoming information correctly.

Unknown

II. Neonatal Onset

Prematurity – When infants are born with a weight less than 1,500 grams, complications often arise. Hearing and vision are often affected.

Hypoxia/Anoxia – When the body is deprived of oxygen from such causes as sleep apnea or Respiratory Distress Syndrome (RDS) permanent damage can occur to the sensory systems.

Ototoxic drugs- If an infant needs medical intervention at birth, ingestion of various aminoglycoside antibiotics can result in damage to the newborn.

Central Nervous System (CNS) infections- If bacterial infections, such as meningitis or Group B Streptococcus, occur to the CNS and are undetected for any length of time, damage to the sensory systems is highly possible.

Traumatic delivery – If trauma occurs during delivery, damage may occur to various systems throughout the body, thus resulting in sensory impairments.

III. Infancy and Childhood Onset

Cranial Nerve System infections- As previously stated, if, at any time, an infection that affects the CNS, such as measles, mumps, meningococcus, H. Influenzae, pneumococcus, goes untreated damage will occur to the senses and, potentially, to the brain resulting in cognitive impairments.

Ototoxic drugs- Complications can arise when infants or toddlers must be treated for various medical conditions.

Trauma – Damage to vision and hearing may occur due to any traumatic injury (i.e. fall, accident, or puncture).

TESTING AND DIAGNOSIS

Most hospitals administer newborn hearing screenings to assess the hearing status of the infant. If this is not conducted or if, at any point, a hearing or vision loss is suspected, audiological and vision exams, at infancy, should be conducted as soon as possible. It is critical to determine a baseline of the functionality of the senses. There are times, however, that a student may be tested and does not meet the criteria of “deafblindness” under various requirements. Federal law, however, allows students to be considered deafblind if they are “functioning” as if they are deafblind. This means that a student may fall into an age appropriate, normal range of vision and hearing yet is not able to use his senses in order to interact with the world around him as his typical peers do. This is the case with students who have Cortical Visual Impairment (CVI) or Central Auditory Processing Disorder (CAPD). With these conditions, the eye and ear appear healthy but the processing center in which information is interpreted and understood within the brain is not functioning accurately. When these two conditions are combined with one another or one is combined with a different type hearing or vision loss, these students may be “functioning” as if they are deafblind. These students are then eligible to qualify for services. Children are also eligible for state services, while in the school system, if they are considered to be “at risk.” Being “at risk” may mean that testing is inconclusive, the student has fluctuating hearing or vision losses or the student has a progressive condition in which his hearing or vision loss will worsen over time.