A Guide to Planning and Support for Individuals Who Are Deafblind

Table of Contents

• CONTENTS 8
• PREFACE 24
• CONTRIBUTORS 28
• 1 Deafblindness: A Unique Disability 36
• Introduction 36
• Background 36
• Causes of Deafblindness 37
• Problems of Identification 38
• Who Should Be Treated as Deafblind? 38
• A Defining Question 38
• Recognition of Deafblindness as a Single Disability 41
• Alternative Labels 41
• Errors in Identification 42
• Most Significant Disability Error 42
• Identification as Intellectually Challenged Error 42
• Additional Disabilities Error 45
• Premature Infants Identification Question 46
• Combining Experts from Other Fields Error 48
• Problems Faced by the Individual Who Is Deafblind 48
• Modelling 49
• Developing a Learning Style 49
• Incidental Learning 50
• Communication 50
• Motivation 51
• Self-Stimulation 54
• Discipline 55
• Problems Due to the Low Incidence of Deafblindness 55
• No Pool of Community Knowledge 56
• Need for Intervention Misunderstood 56
• Establishing Self-Fulfilling Prophecies 57
• Need for an Appropriate Personal Plan 58
• A Canadian Approach 60
• Introduction 60
• Identification 60
• The Individual 61
• A Low-Incidence Disability 61
• The Family and the Individual 62
• A Personal Plan 63
• Professionals 64
• Intervention 64
• Conclusion 65
• Summary 65
• 2 Developing a Personal Plan 67
• Introduction 67
• Background 68
• Why a Personal Plan Is Needed 68
• The Personal Plan 72
• The Basis of the Plan 72
• The Purpose of Writing a Personal Plan 72
• Writing a Personal Plan 74
• A Basic Concept 74
• Plan Content 76
• Part One: Personal History 76
• Health History 77
• Therapeutic History 77
• Developmental and Educational History 78
• Family History 78
• Accumulation and Wording of Material 78
• Part Two: The Present Level of Functioning 79
• Key Result Areas 83
• Part Three: Five-Year Goals 85
• What Are Goals? 86
• Writing the Five-Year Goals 88
• Part Four: Twelve-Month Objectives 89
• Writing Behavioural Objectives 90
• Part Five: Resources Required for Implementation (Optional) 94
• Part Six: Implementation Schedule (Optional) 94
• Implementing the Personal Plan 94
• The Actions of the Intervenor 95
• Creating a Reactive Environment 96
• Parental Involvement in Personal Plan Development and Implementation 101
• Support for the Primary Caregiver 102
• Intervention as Parental Relief 102
• Involvement of Family Members 103
• A Community Support System 103
• Additional Points to Consider 104
• Summary 105
• Answers to the Questions 106
• 3 Intervention 108
• Introduction 108
• Defining Intervention 109
• Intervention as an Operational Concept 110
• Intervention as a Philosophical Concept 111
• Confusion Concerning Intervention 111
• The Intervenor 112
• The Role of the Intervenor 113
• General Intervention 113
• Suggestions for Providing General Intervention 115
• Approaching a Deafblind Person 115
• Further Suggestions 120
• Cues and Objects of Reference 120
• Facilitating Expressive and Interactive Communication 120
• Don't Talk At, Interact With 121
• 'Baby Talk' Signing 121
• Do With, Not For 121
• A Total Communication Approach 122
• Feedback and Support 122
• The Wrong Kind, Not Too Much Intervention 122
• Instructional Intervention 123
• Presentation Sequence 123
• Interaction Sequence 123
• Reaction Sequence 123
• Level One 123
• Level Two 125
• Level Three 126
• Level Four 127
• Generalizing the Instructional Intervention Model to All Ages and Levels of Functioning 127
• Infants and Children 127
• Adults 128
• Social Intervention 129
• The Ten Commandments of Deafblind Culture 131
• One Activity Period, Several Types of Intervention 131
• Mother Providing Intervention during a Routine Activity 132
• A Three-Year-Old at the Park with His Sister Who is Acting as an Intervenor 135
• A Twelve-Year-Old in a Primary Classroom with His Intervenor 138
• An Eighteen-Year-Old and Her Intervenor Discussing What They Will Do 146
• Additional Considerations 149
• Summary 150
• 4 Communication 152
• Introduction 152
• The Focus Group 152
• The History of Deafblind Education 153
• Communication Is a Basic Need 154
• Lack of Natural Context 154
• Chapter Content 155
• Core Strategies of Intervention 155
• Creating a Natural Context for Communicative Development 155
• Use the Strong Channels and Try to Instrument the Residual Senses 156
• Sensitivity and Child-Directed Intervention 156
• Repetition and Novelty 157
• Using Activities to Develop Communication 157
• How Communication Develops 158
• Communication Is a Co-Created Process 158
• It Happens in Social-Interactive Play 159
• Communication Exists and Develops at a Pre-verbal Stage 159
• Neurological, Cognitive, and Social Conditions for Developing Communication 161
• What Is Communication For and About? 162
• Communication and Language Develop within Play 162
• Communication Is Developing as Long as the Flow Interaction Is Not Broken 163
• Many Aspects of Communicative Development Are Not Related to Age 164
• Frameworks for Communicative Events with Congenitally Deafblind People 164
• Primary Intersubjectivity 165
• Secondary Intersubjectivity 169
• Emergence of Symbolic Aspects of Communication 173
• Introducing Semantics and Linguistics 176
• Cognitive and Information Processing Problems in Communicative Development of Deafblind People 179
• Specific Challenges 179
• Summary 181
• 5 Neurobiological Development and Cognition in the Deafblind 183
• Introduction 183
• The Development of Intelligence 184
• Current Theories in Cognitive Development 186
• Neurobiological Correlates to Cognitive Development 189
• Sensory Deprivation and Brain Development 191
• Psychological Testing and Deafblindness 193
• Current Assessment Tools for the Deafblind 197
• Patterns of Cognitive Development in the Deafblind 198
• The Role of the Intervenor 199
• Proposed Course of Action 200
• Case Studies 202
• Case Study 1 202
• Case Study 2 203
• Summary 204
• 6 Social Relationships and Behaviour 208
• Introduction 208
• Emotional Bonding 209
• Emergence of Self 209
• Awareness of the Environment and Options 209
• Management of Emotions 210
• Aspects of Early Bonding 211
• Bonding 211
• Lifesphere and Landscape 211
• Pendulum Movement 212
• The Mother Bond 212
• Awareness of Self and Other 214
• Self-Awareness 214
• Emergence of Emotions 215
• Other-Awareness 215
• Awareness of the Environment 216
• Stages of Interaction 217
• Management of Emotions 220
• Recreation 221
• Behaviour Management 222
• Stage 1: Identification 223
• Stage 2: Analysis 223
• Category 1: Medical 225
• Category 2: Communication 225
• Category 3: Appropriate Programming 227
• Category 4: Consistency of Expectations 228
• Stage 3: Development of Strategies 228
• Intervention 228
• Time-in, Not Time-out 229
• Concrete Support 229
• Behaviour Shaping 230
• Skill Building 230
• Choices 231
• Stage 4: Implementation 231
• Stage 5: Evaluation 232
• Final Thoughts 232
• Summary 232
• 7 Social/Sex Education for Children and Youth Who Are Deafblind 234
• Introduction 234
• Problem Overview 234
• Some Aspects to Consider in Social/Sex Education for Individuals with Disabilities 235
• Ourselves and Society 235
• The Individual with Deafblindness 239
• Content: What and When to Teach 241
• Social/Sex Education Core Curriculum 243
• Techniques 245
• Role Playing 249
• In Vivo Counseling/Teaching 249
• Photos, Slides, Pictures, Drawings 250
• Video 250
• Models 250
• Books, Audiotapes 251
• Peer Support Groups 251
• Pulling It All Together 251
• Policy Development: Moving Ahead 253
• Summary 254
• 8 A Family Viewpoint 260
• Introduction 260
• Special but Ordinary 261
• The Importance of Emotional Engagement 262
• Emotional Reality 264
• Emotion and Reason 266
• Aiding Adjustment 267
• Mutual Respect and Recognition 268
• Coordination of Input 270
• The Specialist in Deafblindness 270
• Family Environment 271
• Mothers and Fathers 273
• Honesty 274
• Brothers and Sisters 275
• The Extended Family 277
• Social Changes 277
• Single Parents 278
• Personal Identity 279
• Changes over Time 279
• Advice to Education Services 280
• Transition 281
• Priorities 281
• Confidence 283
• Post-School Separation 285
• Letting Go 286
• A Final Word 289
• Ten Commandments 289
• Actual Bereavement 290
• Summary 292
• 9 The Preschool Years 294
• Introduction 294
• Overview 295
• Identification and Referral 296
• Identification 296
• Referral 296
• Initial Evaluation 297
• The Process 297
• Initial Evaluation Location 298
• Initial Evaluation Interaction 298
• The Team 299
• Purpose of the Initial Evaluation 299
• The Recorder 300
• The Interactor 300
• Parental Questions 302
• Initiating Parental Consultation 302
• Personal Plan Development and Implementation 303
• Formative Evaluation 304
• Writing the Preschooler's Personal Plan 306
• Training for Parents, Family, and Community Professionals 307
• Introduction of Non-Family Intervenor(s) in the Home and Preschool Settings 308
• In the Home 308
• In the Preschool Setting 309
• Preschool and Community Services 310
• Preparation for the School Years 311
• Additional Considerations during the Preschool Years 314
• Requests for Support Seen as Excessive 314
• Family Failing 315
• Appropriate Support for the Family 315
• When Available Resources Restrict Support 316
• Alternative Approaches to Support 316
• Summary 318
• 10 The Community-Based School Option 320
• The Community School: A Viable Option? 320
• Making the Decision 320
• Elements to Consider in Potential Placements 322
• An Effective Team Approach 323
• The Members of the Team 323
• The Benefits of Developing an Effective Team Approach 323
• The Roles of the Members of the Team 323
• The Educational Program 326
• Educational Program Development 326
• Designing the Educational Program 329
• Personal Plan Binder for Students with Deafblindness 332
• Contents 332
• The Five Key Factors for Effective Inclusion 334
• A Knowledgeable and Supportive Family or Primary Caregiver 334
• Supportive School Personnel at All Levels 335
• An Appropriate Educational Placement and Program 336
• Supportive Community Personnel and Services 337
• Appropriate Intervention 338
• Commonly Asked Questions/Issues about School Intervenors 338
• Summary 340
• 11 The Residential School Option 350
• Introduction 350
• The Residential School 351
• What to Consider in a Residential School 352
• Family Involvement 352
• The Development, Implementation, and Evaluation of a Personal Plan 355
• The Staff to Student Ratio 366
• Staff Training in the Residential School Setting 369
• Consistency of Approach 370
• Residence Workers 372
• Transition from the Residential School to an Adult Community 373
• Stage 1: The Pseudo Apartment Setting 374
• Stage 2: The Transition Housing Project 374
• Stage 3: Transition to Adult Services 376
• Support Services 379
• Conclusion 380
• Summary 381
• 12 Community-Based Adult Programs 384
• Introduction 384
• Background 385
• Adults Who Have Received Appropriate Programming and Support 385
• Adults Who Have Been Home Based without Appropriate Support 386
• Adults Who Have Come From an Institutional Setting 386
• Transition 387
• Advanced Planning 387
• Parental Concerns 387
• The Medical Aspects of Transition 388
• Transitions for Young Adults Who Received Appropriate Services 388
• Transition for Young Adults Who Did Not Receive Appropriate Services 388
• Adults Moving from an Institutional or Other Care Facility 389
• Other 389
• Programming 390
• Basis for Personal Plan Development 390
• Sources of Information 390
• Identifying Key Result Areas 391
• Plan Content for the Congenitally Deafblind Adult 391
• Recreation 393
• Vocation 396
• Implementing the Personal Plan 397
• Plan Ownership 397
• Two Underlying Goals 398
• Utilizing Activities 398
• Calendars 401
• The Calendar Process 402
• Points to Remember 404
• Challenging Behaviours 405
• Communication and Challenging Behaviours 406
• Congenital Rubella Syndrome and Challenging Behaviours 407
• Challenging Behaviours in the Community 407
• Late Manifestations of Rubella 408
• Sexuality 409
• Intervention 411
• The Need for Intervention 411
• Hiring an Intervenor 411
• The Hiring Process 412
• Conclusion 415
• Summary 416
• 13 Creating and Maintaining a Support System: An Analysis Based on Experiences at Sense 417
• Introduction 417
• Contents 418
• The U.K. Environment 419
• Organization 422
• Need 424
• Support 427
• Attitudes 430
• Growth of the Organization 431
• Difficulties 437
• Pluses and Minuses 438
• Essential Elements 442
• Conclusions and Statements 442
• Starting 445
• Influencing or Providing? 446
• Choosing the Focus 447
• A Support System 447
• Creating Community Awareness 449
• Bringing about Change 452
• Fund-Raising for a Voluntary Organization 453
• Direct Marketing 455
• Targeted Appeals 455
• Field Revenue Team 456
• Company Fundraising 457
• Trust Fundraising 457
• Sense's Charity Shops 457
• Fundraising Professionalism 458
• The Long Slow Haul: Specialist Training in Deafblind Services 458
• Children 459
• Adults 460
• Last Word 462
• 14 Advocacy 463
• What Is Advocacy? 463
• Advocacy for Congenitally and Early Adventitiously Deafblind Individuals 464
• Why Is Advocacy Different for Persons Who Are Deafblind? 465
• The 'Uniqueness' of the Disability 465
• Deafblindness Is a Low-Incidence Disability 466
• The Lack of Public Awareness 467
• The Absence of a Pool of Community Professional and Semi-Professional Knowledge 467
• Special Educational Needs 468
• Advocacy from the Parent's Perspective 469
• Family Education and Awareness Training Needs 470
• Establishing an Ongoing Advocacy Process 472
• Intervenors as Advocates 472
• Different Forms of Advocacy 473
• Individual Advocacy 473
• Professional Advocacy 473
• Political Advocacy 473
• Organizational Advocacy 474
• The Process of Advocacy 475
• Prerequisites to Begin Advocacy 475
• Good Advocacy Practices 475
• General Considerations 475
• Additional Useful Procedures or Tips 476
• The First Meeting 479
• The Follow-up Letter 480
• Subsequent Meetings with 'Higher Authorities' 482
• Other Advocacy Techniques 483
• Lobbying through Letters 483
• Preparing Briefs 483
• Lobbying Elected Officials 484
• Using the Media 484
• Summary 485
• 15 Physiotherapy for the Multiply Challenged Deafblind Individual 487
• Introduction 487
• Programming 488
• Medical and Other Problems 488
• Non-Medical Considerations 489
• Program Goals 489
• Initial Approach 489
• Assessment 490
• Implementing the Program 492
• Helpful Hints for Working with Infants 492
• Programming for Children, Youth, and Adults 493
• Hydrotherapy and Swimming Pools 495
• Practical Applications of Physiotherapy Exercises 495
• Spasticity 496
• Improvement of Muscle Power 496
• Balance 496
• Coordination and Control 496
• Hand Exercises 497
• Lying 499
• Four-Point Kneeling 499
• Crawling 500
• Sitting on the Floor 500
• High Sitting 500
• Standing 500
• Gait 500
• Conclusion 501
• Summary 501
• 16 Intervenor, Teacher, and Consultant Training 503
• Introduction 503
• Intervenor Training 503
• Introduction 503
• The Interview Process 504
• Information 506
• Observation Time 509
• Hands-on Work 510
• Post-Employment Training 512
• Academically Based Training Programs 513
• Family Situations 515
• Family Members as Intervenors 516
• Teacher Training 517
• Introduction 517
• Training 518
• Part I 518
• Part II 520
• Part III 521
• Consultant Training 522
• Introduction 522
• Sources of Recruitment 522
• Areas of Knowledge Required 522
• The Consultant's Role 524
• Caseload 525
• Summary 526
• 17 Final Thoughts 529
• 18 Resources 539
• National Programs 539
• Argentina 539
• Australia 539
• Austria 542
• Belgium 542
• Brazil 543
• Bulgaria 543
• Canada 543
• Czech Republic 548
• Denmark 549
• Estonia 550
• Finland 550
• France 552
• Germany 552
• Ghana 554
• Greece 554
• Hungary 554
• Iceland 555
• India 555
• Ireland 555
• Israel 556
• Italy 556
• Japan 556
• Kenya 558
• Lithuania 558
• Malaysia 558
• Netherlands 558
• New Zealand 559
• Norway 560
• Philippines 561
• Poland 562
• Portugal 562
• Romania 562
• Russia 562
• Singapore 563
• Slovakia 563
• South Africa 564
• Spain 564
• Sweden 564
• Switzerland 564
• United Kingdom 565
• United States of America 568
• International Programs 575
• Deafblindness on the Internet 576
• GLOSSARY 580
• A 580
• B 580
• C 581
• D 581
• E 582
• F 582
• G 582
• H 582
• I 583
• K 583
• L 583
• M 584
• N 584
• O 584
• P 585
• R 585
• S 586
• T 587
• W 587