Transition To increase the ability of educational and adult service systems to be responsive to the unique transition needs of deafblind youth and their families, supporting them in achieving valued life outcomes.
Deaf-Blind Deafblind Deaf, Visually Impaired Hard-of-Hearing, Visually Impaired
Dual sensory loss Dual sensory impaired
Combined hearing & vision loss Multiply Disabled/ Handicapped
The federal government defines deaf-blindness as:  "concomitant hearing and visual impairments, the
combination that creates such severe communication and other developmental and educational needs that they cannot be accommodated in special education in programs solely for children with deafness or children with blindness." FR Dept. of Education, 34 CFR Parts 300 & 303. Vol. 64, No. 48.3/12/99
The Faces of Deaf-Blindness
Hearing
=
+ X
Vision
deaf-blindness
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All individuals have diverse vision and hearing loss, with the presence or absence of additional disabilities.
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Some individuals go on to college and/or live independently while others will require varying degrees of lifelong support.
Significant variability in life experience, communication and overall development: Congenitally Deaf, Adventitiously Blind Congenitally Blind, Adventitiously Deaf
Adventitiously Deaf-Blind Congenitally Deaf-Blind
Congenitally Deaf – Adventitiously Blind Individuals who are born with a significant hearing loss and acquire a vision loss later in life. -These individuals are often involved in the Deaf community and use sign language as their primary mode of communication.
Congenitally Blind – Adventitiously Deaf Individuals who are born with significant visual impairment or are blind and acquire deafness later in life. -These individuals grow up and socialize in the hearing community and can be Braille readers, experienced cane users and have guide dogs.
Adventitiously Deaf-Blind An individual who is born hearing and sighted but loses both senses (either in part or totally) for various reasons. -Typically associated to trauma, ototoxic causes, neurologic disorders, etc. These individuals are usually oral/aural and have associated with the hearing community.
Congenitally Deaf-Blind Individuals who were born with concomitant vision and hearing loss. -Congenital deafblindness is typically associated with perinatal trauma, various syndromes (CHARGE Syndrome) or unknown causes. -The level and type of the communication for these individuals will vary significantly.
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Terms used to describe Vision loss terms ▪ Near Vision ▪ Low Vision ▪ Fluctuating Vision ▪ Tunnel Vision ▪ Restricted Peripheral Visual Fields ▪ Functional Vision ▪ Functionally Blind (CVI) ▪ Blind (NLP)
Acuity Loss Field Loss
Peripheral Loss
Central Loss Cortical Visual Impairment
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Legal blindness can be defined in two ways; through central visual acuity or through peripheral visual fields.
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People who are legally blind may still have very functional vision that is helpful on a daily basis for communication and ambulatory purposes.
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When measuring central visual acuity, an individual with 20/200 vision is considered legally blind.
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As the bottom number increases, the more significant the vision loss.
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The bottom number is a measurement of distance.
“Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.� - Helen Keller
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We use approximately 180 degrees of vision.
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In measuring peripheral vision, when an individual has an approximate 20 degrees of remaining functional fields of vision, a person is considered legally blind.
Normal
~20 degrees
~ 7 degrees
Corn’s Model of Visual Functioning
Etiologies Affecting Hearing & Vision
HEREDITARY SYNDROMES AND DISORDERS
PRENATAL/CONGENITAL COMPLICATIONS
CHARGE Syndrome 747 Usher Syndrome (I,II,III) 217 Down syndrome (Trisomy 21 syndrome) 262
Cytomegalo-virus (CMV) 332 Microcephaly 288 Hydrocephaly 230 Congenital Rubella 87
POST NATAL/ NON-CONGENITAL Asphyxia 241 Meningitis 208 Severe Head Injury 197 Encephalitis 74 Complication of Prematurity 1171 No Determination of Etiology 1646
NCDB 2011
Common Syndromes that cause Dual Sensory Loss/Deaf-Blindness
Usher Syndrome
Congenital Rubella
CHARGE Syndrome
Photo courtesy of: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=charge
Kids with multiple disabilities are significantly under-diagnosed with sensory loss but are at extreme risk.
Mild to moderate levels of hearing & vision loss are exacerbated when combined together.
What binds people who are deaf-blind are the unique communication needs and the challenges experienced with limited access to the social and physical world that surrounds them.
Who Are Deaf-Blind Young Adults?
Best practices in transition planning for young adults who are deaf-blind
Student & Family Centered Transition Planning for Young Adults who are DeafBlind
Comprehensive & Interdisciplinary Long-Term & Evolving Build Social Capitol
Planning Process Begins Early
Student & Family Centered  The set of activities for each student needs to be based on the student's individual needs, preferences, and interests.
Person Centered Planning
Develops a vision of a person’s future, based on what is important and positive for that person and the family
Is a process to identify a person’s skills, capabilities, preferences and gifts
Seeks to identify a person’s needs, and the supports that can be provided to meet those needs
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The PCP process allows the team to shift from a system-driven process to an individual-focused process Individualfocused
Systemdriven
This student demonstrated interest in working outside. Thus, a placement was found for him at a local farm.
“The success of the Person Centered Planning process is not measured by the content of the plan, but by the quality of the life that a person experiences as a result of the plan.� Evelyn Popper
Comprehensive & Interdisciplinary
Successful transition teams adopt an interdisciplinary teaming philosophy.
Why an Interdisciplinary
Approach ???
Learners who are deaf-blind have a difficult time transferring skills across environments
Skill acquisition and maintenance…
must occur within natural settings requires role sharing & cross-discipline communication must have techniques and strategies that are consistent across communication partners and environments
Edited by Susanne Morgan Morrow from “Transition Planning Guidebook for Young Adults who are Deafblind” drafted by the New York State Transition Partnership for Children and Youth who are Deafblind
Long-Term & Evolving
Any transition plan should be viewed as a live, every-changing document Preferences change New resources become available Life situations shift
Professionals come & go
Monitoring status and progress is critical
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Create check points throughout the academic year and set reminders in your calendar to check-in with the team
Build Social Capitol Think of building social capital as similar to creating a bank account, readily available for withdrawals when they are needed.
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Instead of depositing money into the bank you are adding resources of people and networks from which to draw upon in times of need.
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Having social capital allows you to draw upon previously established relationships and networks. The relationships are reciprocal in nature.
Need a job experience? -Call your contact at the local rotary club & town hall
Need a weekend leisure activity? -Call your contact at the YMCA & Girls Scouts
Need a pick-up from the after school program? -Call Sally down the block
Need a transition counselor in the adult service agency? -Call the HKNC Regional Representative
Planning Process Begins Early
1. Due to the complex needs of students who are deaf-blind, multiple people and various systems must come together to form a comprehensive, person-centered, clearly stated plan with action steps
This requires a lot of planning time
Where to begin?
2. Families move from a system of entitlement to a system of eligibility.
Interdisciplinary Transition Team Initiative (ITTI)
An Intensive Transition Planning Approach for Young Adults who are Deaf-Blind Susanne Morrow NYDBC Project Coordinator
Interdisciplinary Transition Team Initiative (ITTI) ~An Intensive Transition Planning Approach for Young Adults who are Deaf-Blind
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The Interdisciplinary Transition Team Initiative (ITTI) is a transition planning initiative that incorporates evidence based practices for young adults who have combined hearing and vision loss, their families and educational team members.
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Began as a pilot project in 2012-2013 with a limited number of teams in downstate New York, now evolved into a multi-state initiative
17 states have signed a multi-state, multi-year partnership agreement
The ITTI is an academic-year long process with a hybrid design Two large-scale face-to-face sessions
Webinars for content Monthly web-based meetings
Monthly transition planning task Face-to-face transition team meetings as
needed Online Community of Practice Technical Assistance Agreement
Requirements: The team is centered around a student who is deaf-blind between 14-21 Commitment on behalf of the family, transition team members, and administrator. Permission to use school/agency technology Access to high-speed internet, webcam & computer Participation in online Community of Practice
ITTI Community of Practice
ITTI Transition Planning Timeline Ages 12-14
ITTI Transition Planning Timeline Ages 15-16
ITTI Transition Planning Timeline Ages 17-18
ITTI Transition Planning Timeline Ages 19-21
Benefits to Participation Enhanced interdisciplinary collaboration Smoother IEP planning process Person-centered goals designed to meet the
student and family’s wishes Enhancement of self-determined behaviors Increased knowledge for families of the planning process and services outside of the educational environment Enhanced quality of life for the student
We need your help in identifying transition age students who are deaf-blind to participate in the ITTI
RECRUITMENT PHASE: APRIL-MAYJUNE 2014
http://pepnet.org/itransition