In this ground-breaking collection, leading experts in the field address the problems of parents, intervenors, and professionals who work with people who have been deafblind since birth or from a very early age.
Individuals who are congenitally deafblind face the same challenges as those who become deafblind later in life, but they have not had the same opportunity to develop the communications skills and a conceptual base needed to construct an understanding of the world. The contributors address identification of deafblindness, planning and intervention, development, family support, and education.
Just as McInnes and Treffry's "Deafblind Infants and Children" helped to change the approach to and the perception of deafblind children, this collection will assist in fostering a new approach to the education of and support for older children, youth and adults who are deafblind. An essential part of this process is to set forth standards for program development, implementation, and evaluation, which this volume aims to accomplish. It will make an essential contribution to the expanding field of services for the deafblind population of all ages, and to the improved understanding of parents, family members, and professionals who support them.
Authors
- Bibliography, etc. Note
- Includes bibliographical references
- Control Number Identifier
- CaOOCEL
- Dewey Decimal Classification Number
- 362.4/1
- Dewey Decimal Edition Number
- 21
- General Note
- Issued as part of the desLibris books collection
- ISBN
- 0802042422 9781442670341
- LCCN
- HV1597
- LCCN Item number
- G84 1999eb
- Modifying agency
- CaBNVSL
- Original cataloging agency
- CaOTU
- Physical Description | Extent
- 1 electronic text (xxxi, 554 p. : forms)
- Published in
- Canada
- Publisher or Distributor Number
- CaOOCEL
- Rights
- Access restricted to authorized users and institutions
- System Control Number
- (CaBNVSL)thg00600513 (OCoLC)666911966 (CaOOCEL)417938
- System Details Note
- Mode of access: World Wide Web
- Transcribing agency
- CaOTU
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