ORTHOPEDAGOGIEK: HANDICAPS
Inhoudstafel
Orthopedagogiek: handicaps .................................................................................................................................. 1
Inleiding ............................................................................................................................................................. 20
Orthopedagogiek?......................................................................................................................................... 20
VISIE OP HANDICAP – ICF 2001 ..................................................................................................................... 22
Gezondheid ............................................................................................................................................... 24
Lichaamsfunctioneren en -structuren ....................................................................................................... 24
Activiteit .................................................................................................................................................... 24
Participatie ................................................................................................................................................ 24
Omgevingsfactoren ................................................................................................................................... 25
Persoonlijke factoren ................................................................................................................................ 25
Deel 1 – Ouderschap onder druk? .................................................................................................................... 28
Hoofdstuk 1: Onderkennen, verwerken & aanvaarden .................................................................................... 28
Ervaringen van ouders .................................................................................................................................. 29
Theoretische modellen ................................................................................................................................. 30
1.Stappenmodel in rouwproces ................................................................................................................ 30
2.Chronisch zorgenmodel ......................................................................................................................... 31
3.Mentale (re)constructies ........................................................................................................................ 32
4.Sociale (re)constructie-model ................................................................................................................ 34
Levend verlies – Manu Keirse........................................................................................................................ 35
Reflectie ........................................................................................................................................................ 36
Parents of children with disabilities: Resilience, coping, and future expectations (Heiman, 2002) ............. 36
Aandachtspunten voor hulpverleners........................................................................................................... 37
Onderkenningsfase en diagnosemededeling ............................................................................................ 37
Diagnosemededeling ................................................................................................................................. 37
Reacties op de diagnose (verwerking) ...................................................................................................... 37
Hoofdstuk 2: Gezinsfunctioneren & opvoeding ................................................................................................ 38
Hulpvragen van ouders ................................................................................................................................. 39
Theoretische modellen ................................................................................................................................. 41
1.Balansmodel ........................................................................................................................................... 41
2.Stress-model .......................................................................................................................................... 42
Coping strategie (BC) ................................................................................................................................. 44
Aanpassingsprocessen in het gezinssysteem ............................................................................................ 44
Ecocultureel model ................................................................................................................................... 48
Kwaliteit van leven van het gezin/ family quality of life ........................................................................... 49
1
, Quality of Life in Flemish Families with a Child with an Intellectual Disability: a Multilevel Study on
Opinions of Family Members and the Impact of Family Member and Family Characteristics (Vanderkerken
et al., 2018) ................................................................................................................................................... 52
Aandachtspunten voor hulpverleners........................................................................................................... 53
Hoofdstuk 3: Ondersteunen van gezinnen........................................................................................................ 55
Family-centered werken/ gezinsgericht werken ........................................................................................... 55
Family-centered practices in home-based support for families with children with an intellectual disability:
Judgments of parents and professionals (Vanderkerken, Heyvaert, Onghena, & Maes, 2019) ................... 56
Effectonderzoek: Dunst, Trivette & Hamby, 2007 ........................................................................................ 57
Vragen bij opdracht........................................................................................................................................... 57
Deel 2: Ondersteuning en begeleiding van personen met een handicap ......................................................... 58
Hoofdstuk 1: Actuele visies ........................................................................................................................... 58
Visie 1.Volwaardig burgerschap & inclusie, belonging.............................................................................. 58
Voorlopers van inclusie ................................................................................................................................. 60
Normalisatie en integratie - kritiek ............................................................................................................... 61
Voorlopers van inclusie: handicap als sociaal construct ............................................................................... 61
Segregatie – integratie – inclusie .................................................................................................................. 63
Inclusie & volwaardig burgerschap ............................................................................................................... 63
Community participation of people with an intellectual disability: a review of empirical findings
(Verdonschot, de Witte, Reichrath, Buntinx & Curfs, 2009) ...................................................................... 65
Impact of environmental factors on community participation of persons with an intellectual disability: a
systematic review (Verdonschot, de Witte, Reichrath, Buntinx & Curfs, 2009) ........................................ 65
Eenzaamheid ................................................................................................................................................. 66
Eenzaamheid bij personen met een verstandelijke beperking ................................................................. 66
Visie 2. Kwaliteit van leven! .......................................................................................................................... 68
Kwaliteit van leven - Basisprincipes .......................................................................................................... 68
Operationalisering van domeinen van kwaliteit van leven (Schalock, 2004, p.206) ................................. 68
Kwaliteit van leven - toepassingen ............................................................................................................ 69
visie 3. Empowerment & emancipatie .......................................................................................................... 70
Zelfdeterminatietheorie Deci & Ryan (2000) ............................................................................................ 71
The impact of personal characteristics of people with intellectual and developmental disability on self‐
determination and autonomous functioning (Wehmeyer & Garner (2003) ............................................ 72
Visie 4. Persoonsgerichte & vraaggestuurde ondersteuning ........................................................................ 73
Supports model/ondersteuningsmodel .................................................................................................... 73
Ondersteuningsmodel ............................................................................................................................... 74
Indicatoren van persoonsgerichte ondersteuning (wat willen doen en dan dat realiseren) .................... 75
Hoofdstuk 2: Ondersteunen van leer- en ontwikkelingsprocessen .............................................................. 76
1.Interactionele benadering ...................................................................................................................... 76
2
, Individugebonden factoren ................................................................................................................... 76
Contextgebonden factoren ................................................................................................................... 77
2.Principes ................................................................................................................................................. 78
Theoretische achtergronden ................................................................................................................. 78
Algemene principes ............................................................................................................................... 85
Hoofdstuk 3: Ondersteunen van communicatie ........................................................................................... 87
1.Wat is communicatie.............................................................................................................................. 87
2.Interactionele benadering ...................................................................................................................... 88
Problemen in de communicatie - Individugebonden factoren ............................................................. 88
Problemen in de communicatie - contextgebonden factoren .............................................................. 88
3.Typering van communicatief gedrag ...................................................................................................... 89
1ste invalshoek: Vorm van communicatie: gedrag ................................................................................. 89
2de invalshoek: Functie/betekenis van communicatie .......................................................................... 89
3de invalshoek: Niveau van communicatie ............................................................................................ 90
4.Inzicht in communicatief functioneren .................................................................................................. 92
5.Ondersteunde communicatie ................................................................................................................ 94
Ondersteunen van pre- en protosymbolische communicatie............................................................... 95
Ondersteunen van protosymbolische en symbolische communicatie ................................................. 99
Key word signing usage in residential and day care programs for adults with intellectual disability
(Meuris, K., Maes, B., & Zink, 2014) ........................................................................................................ 104
Hoofdstuk 4: Ondersteunen van socio-emotioneel welbevinden .............................................................. 105
1.Belang social- emotioneel ontwikkelingsprofiel .................................................................................. 105
2.Sociaal-emotionele ontwikkeling ......................................................................................................... 105
(1ste fase) Adaptatiefase (0-6 maanden) ............................................................................................. 105
(2de fase) Eerste socialisatiefase (6-18 maanden) ............................................................................... 107
(3de fase) Eerste individuatiefase (18-36 maanden) ............................................................................ 110
Can I be your safe haven and secure base? A parental perspective on parent-child attachment in young
children with a severe or profound intellectual disability. Vandesande, S., Bosmans, G., Maes, B. (2019).
................................................................................................................................................................. 112
Identificatiefase (3-7 jaar) & Realiteitsbewustwordingsfase (7-12 jaar) ............................................. 113
Puberteit & Tweede individuatiefase (12 jaar - …) ............................................................................. 118
Gastcollege niet aangeboren hersenletsels (nah) ........................................................................................... 121
Inleiding ....................................................................................................................................................... 122
1. Definitie Niet-aangeboren Hersenletsel (NAH). ............................................................................ 124
2. Anatomie van de hersenen ........................................................................................................... 125
3. Oorzaken van een niet-aangeboren hersenletsel ................................................................................... 126
4. Van coma tot bewustzijn ......................................................................................................................... 128
3
, 5. Gevolgen van een niet-aangeboren hersenletsel ................................................................................... 129
5.1 Fysieke stoornissen en beperkingen ......................................................................................... 130
5.2 Cognitieve beperkingen ............................................................................................................ 131
5.3 Beperkingen in de communicatie ............................................................................................. 133
5.4 Emotionele gevolgen ................................................................................................................ 135
5.5 Gedragsproblemen ................................................................................................................... 137
5.6 Sociale gevolgen ....................................................................................................................... 139
Deel 2 – Ondersteuning en begeleiding van personen met een handicap ..................................................... 140
Hoofdstuk 5: Ondersteuningsbronnen ........................................................................................................... 141
1.Zelfzorg ..................................................................................................................................................... 142
Versterken van de persoon ..................................................................................................................... 143
Gebruik van technologie ..................................................................................................................... 143
E-society .......................................................................................................................................... 143
Assistive technology vs universal design ......................................................................................... 143
Assistive technology/eHealth .......................................................................................................... 144
Universal Design (VS)/ Design for all (EU): ontwerpen voor iedereen of universeel ontwerp (NL/VL)
......................................................................................................................................................... 145
Barriers .................................................................................................................................................... 146
Problemen bij technologie ...................................................................................................................... 147
Assistive Technology for persons with profound intellectual disability: a European survey on attitudes
and beliefs (Nijs, S. & Maes, B., 2019) ..................................................................................................... 148
Modellen: om tegemoet te komen aan die problemen .......................................................................... 149
Voorbeeld: communicatietechnologie .................................................................................................... 152
Voorbeeld: communicatie ....................................................................................................................... 152
Voorbeeld: mobiliteit .............................................................................................................................. 152
Voorbeeld welbevinden: slimme sok ...................................................................................................... 153
2.Eigen gezin & sociaal netwerk .................................................................................................................. 154
Mantelzorgers: enkele cijfers .................................................................................................................. 155
Het PAB-budget ....................................................................................................................................... 155
Verschillende perspectieven in rekening brengen!................................................................................. 157
3.Reguliere diensten en handicapspecifieke ondersteuning ...................................................................... 157
Deel 3: Maatschappelijke positie van personen met een handicap ............................................................... 159
Enkele vaststellingen ................................................................................................................................... 159
Verklaringen ................................................................................................................................................ 163
Verdragen over de Rechten van Personen met een Handicap ................................................................... 165
Geschiedenis (verdagen ivm de maatschappelijke positie van mensen met een handicap) .................. 165
Grondbeginselen van het verdrag ........................................................................................................... 165
4
Inhoudstafel
Orthopedagogiek: handicaps .................................................................................................................................. 1
Inleiding ............................................................................................................................................................. 20
Orthopedagogiek?......................................................................................................................................... 20
VISIE OP HANDICAP – ICF 2001 ..................................................................................................................... 22
Gezondheid ............................................................................................................................................... 24
Lichaamsfunctioneren en -structuren ....................................................................................................... 24
Activiteit .................................................................................................................................................... 24
Participatie ................................................................................................................................................ 24
Omgevingsfactoren ................................................................................................................................... 25
Persoonlijke factoren ................................................................................................................................ 25
Deel 1 – Ouderschap onder druk? .................................................................................................................... 28
Hoofdstuk 1: Onderkennen, verwerken & aanvaarden .................................................................................... 28
Ervaringen van ouders .................................................................................................................................. 29
Theoretische modellen ................................................................................................................................. 30
1.Stappenmodel in rouwproces ................................................................................................................ 30
2.Chronisch zorgenmodel ......................................................................................................................... 31
3.Mentale (re)constructies ........................................................................................................................ 32
4.Sociale (re)constructie-model ................................................................................................................ 34
Levend verlies – Manu Keirse........................................................................................................................ 35
Reflectie ........................................................................................................................................................ 36
Parents of children with disabilities: Resilience, coping, and future expectations (Heiman, 2002) ............. 36
Aandachtspunten voor hulpverleners........................................................................................................... 37
Onderkenningsfase en diagnosemededeling ............................................................................................ 37
Diagnosemededeling ................................................................................................................................. 37
Reacties op de diagnose (verwerking) ...................................................................................................... 37
Hoofdstuk 2: Gezinsfunctioneren & opvoeding ................................................................................................ 38
Hulpvragen van ouders ................................................................................................................................. 39
Theoretische modellen ................................................................................................................................. 41
1.Balansmodel ........................................................................................................................................... 41
2.Stress-model .......................................................................................................................................... 42
Coping strategie (BC) ................................................................................................................................. 44
Aanpassingsprocessen in het gezinssysteem ............................................................................................ 44
Ecocultureel model ................................................................................................................................... 48
Kwaliteit van leven van het gezin/ family quality of life ........................................................................... 49
1
, Quality of Life in Flemish Families with a Child with an Intellectual Disability: a Multilevel Study on
Opinions of Family Members and the Impact of Family Member and Family Characteristics (Vanderkerken
et al., 2018) ................................................................................................................................................... 52
Aandachtspunten voor hulpverleners........................................................................................................... 53
Hoofdstuk 3: Ondersteunen van gezinnen........................................................................................................ 55
Family-centered werken/ gezinsgericht werken ........................................................................................... 55
Family-centered practices in home-based support for families with children with an intellectual disability:
Judgments of parents and professionals (Vanderkerken, Heyvaert, Onghena, & Maes, 2019) ................... 56
Effectonderzoek: Dunst, Trivette & Hamby, 2007 ........................................................................................ 57
Vragen bij opdracht........................................................................................................................................... 57
Deel 2: Ondersteuning en begeleiding van personen met een handicap ......................................................... 58
Hoofdstuk 1: Actuele visies ........................................................................................................................... 58
Visie 1.Volwaardig burgerschap & inclusie, belonging.............................................................................. 58
Voorlopers van inclusie ................................................................................................................................. 60
Normalisatie en integratie - kritiek ............................................................................................................... 61
Voorlopers van inclusie: handicap als sociaal construct ............................................................................... 61
Segregatie – integratie – inclusie .................................................................................................................. 63
Inclusie & volwaardig burgerschap ............................................................................................................... 63
Community participation of people with an intellectual disability: a review of empirical findings
(Verdonschot, de Witte, Reichrath, Buntinx & Curfs, 2009) ...................................................................... 65
Impact of environmental factors on community participation of persons with an intellectual disability: a
systematic review (Verdonschot, de Witte, Reichrath, Buntinx & Curfs, 2009) ........................................ 65
Eenzaamheid ................................................................................................................................................. 66
Eenzaamheid bij personen met een verstandelijke beperking ................................................................. 66
Visie 2. Kwaliteit van leven! .......................................................................................................................... 68
Kwaliteit van leven - Basisprincipes .......................................................................................................... 68
Operationalisering van domeinen van kwaliteit van leven (Schalock, 2004, p.206) ................................. 68
Kwaliteit van leven - toepassingen ............................................................................................................ 69
visie 3. Empowerment & emancipatie .......................................................................................................... 70
Zelfdeterminatietheorie Deci & Ryan (2000) ............................................................................................ 71
The impact of personal characteristics of people with intellectual and developmental disability on self‐
determination and autonomous functioning (Wehmeyer & Garner (2003) ............................................ 72
Visie 4. Persoonsgerichte & vraaggestuurde ondersteuning ........................................................................ 73
Supports model/ondersteuningsmodel .................................................................................................... 73
Ondersteuningsmodel ............................................................................................................................... 74
Indicatoren van persoonsgerichte ondersteuning (wat willen doen en dan dat realiseren) .................... 75
Hoofdstuk 2: Ondersteunen van leer- en ontwikkelingsprocessen .............................................................. 76
1.Interactionele benadering ...................................................................................................................... 76
2
, Individugebonden factoren ................................................................................................................... 76
Contextgebonden factoren ................................................................................................................... 77
2.Principes ................................................................................................................................................. 78
Theoretische achtergronden ................................................................................................................. 78
Algemene principes ............................................................................................................................... 85
Hoofdstuk 3: Ondersteunen van communicatie ........................................................................................... 87
1.Wat is communicatie.............................................................................................................................. 87
2.Interactionele benadering ...................................................................................................................... 88
Problemen in de communicatie - Individugebonden factoren ............................................................. 88
Problemen in de communicatie - contextgebonden factoren .............................................................. 88
3.Typering van communicatief gedrag ...................................................................................................... 89
1ste invalshoek: Vorm van communicatie: gedrag ................................................................................. 89
2de invalshoek: Functie/betekenis van communicatie .......................................................................... 89
3de invalshoek: Niveau van communicatie ............................................................................................ 90
4.Inzicht in communicatief functioneren .................................................................................................. 92
5.Ondersteunde communicatie ................................................................................................................ 94
Ondersteunen van pre- en protosymbolische communicatie............................................................... 95
Ondersteunen van protosymbolische en symbolische communicatie ................................................. 99
Key word signing usage in residential and day care programs for adults with intellectual disability
(Meuris, K., Maes, B., & Zink, 2014) ........................................................................................................ 104
Hoofdstuk 4: Ondersteunen van socio-emotioneel welbevinden .............................................................. 105
1.Belang social- emotioneel ontwikkelingsprofiel .................................................................................. 105
2.Sociaal-emotionele ontwikkeling ......................................................................................................... 105
(1ste fase) Adaptatiefase (0-6 maanden) ............................................................................................. 105
(2de fase) Eerste socialisatiefase (6-18 maanden) ............................................................................... 107
(3de fase) Eerste individuatiefase (18-36 maanden) ............................................................................ 110
Can I be your safe haven and secure base? A parental perspective on parent-child attachment in young
children with a severe or profound intellectual disability. Vandesande, S., Bosmans, G., Maes, B. (2019).
................................................................................................................................................................. 112
Identificatiefase (3-7 jaar) & Realiteitsbewustwordingsfase (7-12 jaar) ............................................. 113
Puberteit & Tweede individuatiefase (12 jaar - …) ............................................................................. 118
Gastcollege niet aangeboren hersenletsels (nah) ........................................................................................... 121
Inleiding ....................................................................................................................................................... 122
1. Definitie Niet-aangeboren Hersenletsel (NAH). ............................................................................ 124
2. Anatomie van de hersenen ........................................................................................................... 125
3. Oorzaken van een niet-aangeboren hersenletsel ................................................................................... 126
4. Van coma tot bewustzijn ......................................................................................................................... 128
3
, 5. Gevolgen van een niet-aangeboren hersenletsel ................................................................................... 129
5.1 Fysieke stoornissen en beperkingen ......................................................................................... 130
5.2 Cognitieve beperkingen ............................................................................................................ 131
5.3 Beperkingen in de communicatie ............................................................................................. 133
5.4 Emotionele gevolgen ................................................................................................................ 135
5.5 Gedragsproblemen ................................................................................................................... 137
5.6 Sociale gevolgen ....................................................................................................................... 139
Deel 2 – Ondersteuning en begeleiding van personen met een handicap ..................................................... 140
Hoofdstuk 5: Ondersteuningsbronnen ........................................................................................................... 141
1.Zelfzorg ..................................................................................................................................................... 142
Versterken van de persoon ..................................................................................................................... 143
Gebruik van technologie ..................................................................................................................... 143
E-society .......................................................................................................................................... 143
Assistive technology vs universal design ......................................................................................... 143
Assistive technology/eHealth .......................................................................................................... 144
Universal Design (VS)/ Design for all (EU): ontwerpen voor iedereen of universeel ontwerp (NL/VL)
......................................................................................................................................................... 145
Barriers .................................................................................................................................................... 146
Problemen bij technologie ...................................................................................................................... 147
Assistive Technology for persons with profound intellectual disability: a European survey on attitudes
and beliefs (Nijs, S. & Maes, B., 2019) ..................................................................................................... 148
Modellen: om tegemoet te komen aan die problemen .......................................................................... 149
Voorbeeld: communicatietechnologie .................................................................................................... 152
Voorbeeld: communicatie ....................................................................................................................... 152
Voorbeeld: mobiliteit .............................................................................................................................. 152
Voorbeeld welbevinden: slimme sok ...................................................................................................... 153
2.Eigen gezin & sociaal netwerk .................................................................................................................. 154
Mantelzorgers: enkele cijfers .................................................................................................................. 155
Het PAB-budget ....................................................................................................................................... 155
Verschillende perspectieven in rekening brengen!................................................................................. 157
3.Reguliere diensten en handicapspecifieke ondersteuning ...................................................................... 157
Deel 3: Maatschappelijke positie van personen met een handicap ............................................................... 159
Enkele vaststellingen ................................................................................................................................... 159
Verklaringen ................................................................................................................................................ 163
Verdragen over de Rechten van Personen met een Handicap ................................................................... 165
Geschiedenis (verdagen ivm de maatschappelijke positie van mensen met een handicap) .................. 165
Grondbeginselen van het verdrag ........................................................................................................... 165
4
