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Bibliography Baker, S. (2005) Growing Up, Sex and Relationships: A Booklet to Support Parents of Young Disabled People, London, Contact a Family. Baker, S. (2005) Sex and Relationship Education for Young People with Physical Dis- abilities: A Booklet for Teachers, London, Contact a Family. Case-Smith, J. and Humphry, R. (2001) ‘Feeding intervention in occupational therapy for children’, in J. Case-Smith (ed.), Occupational Therapy for Children, 4th edn, London, Mosby Inc. Christophers, H. (2005) Growing Up, Sex and Relationships: A Booklet for Young Disabled People, London, Contact a Family. Cohen, H. (1999) Neuroscience for Rehabilitation, 2nd edn, London, Lippincott Williams and Wilkins. Griffin, S. and Price, V. (2000) ‘Living with lifting: Mothers’ perceptions of lifting and back strain in child care’, Occupational Therapy International, 7(1), pp. 1–20. Ham, R., Aldersea, P. and Porter, D. (1998) Wheelchair Users and Postural Seating, New York, Churchill Livingstone. Kumar, P. J. and Clark, M. L. (1990) Clinical Medicine, 2nd edn, Bailliere, Tindall. Morrow, M., Michael, S. and Clark, J. (2003) ‘Ashcraig seating assessment guidance: Duchenne muscular dystrophy’, a guide to seating for bio-engineers, physiothera- pists, occupational therapists and rehabilitation engineers, and interested parents, available online at www.gla.ac.uk/muscle/dmd_seating.htm#guide. Sales, R. and Utting, J. (2002) ‘Manual handling and nursing children’, Paediatric Nursing, 14(2), pp. 36–42, Article 760. FURTHER READING FOR DEPRESSION AND ANXIETY Baker, L. L. and Ashbourne, L. L. (2002) Treating Child and Adolescent Depression: A Handbook for Children’s Mental Health Practitioners: Children’s Mental Health, Ontario, Canada, available online at www.lfcc.onnn.ca/depression_hand- book.html. Brooks, S. J., Krulewicz, S. P. and Kutcher, S. (2003) ‘Kutcher Adolescent Depression Scale: Assessment of its evaluative properties over the course of an 8 week pediatric pharmacotherapy trial’, Journal of Child and Adolescent Psychopharmacology, 13(3), pp. 337–49.

242 BIBLIOGRAPHY Kovacs, M. (1985) ‘The Children’s Depression Inventory (C.D.I.)’, Psychopharma- cology Bulletin, 21, pp. 995–8. Lougher, L. (ed.) (2001) Occupational Therapy for Child and Adolescent Mental Health, London, Churchill Livingstone. National Institute for Clinical Excellence (NICE) has produced guidelines for Depres- sion in Children and Young People (2005), available online at www.nice.org.uk. Dr William Reynolds has produced a Reynolds Child Depression scale (RCD) for under-12-year-olds, and the Reynolds Adolescent Depression Scale −2 (RAD) Reynolds, W. M. (1988), available online at www.sigmaassessmentsystems.com. In the UK, child and adolescent mental health services use different assessment scales, which include: The Hospital Anxiety and Depression Scale (HAD) and the Anxious Thoughts Inventory (AnTI), developed by Adrian Wells. Thanks to the OT Central Scotland CAMHS group for this information. FURTHER READING FOR SOCIAL NEEDS Closs, A. (1998) The Quality of Life of Children and Young People: Growing Up with Disability, London, Jessica Kingsley. Department for Education and Employment (2002) ‘Bullying, don’t suffer in silence’, an anti-bullying pack for schools, available online at www.dfes.gov.uk/bullying/ teachersindex. National Children’s Bureau (2002) Making It Work: Removing Disability Discrimina- tion, available online at www.ncb-books.org.uk. Parent Project Muscular Dystrophy website, with information and resources, including emotional issues, available online at www.parentprojectmd.org. Thompson, C. (1999) Raising a Child with a Neuromuscular Disorder, Oxford, Oxford University Press. FURTHER RESOURCES BBC news online, reported 15 November 2006, available online at www.news.bbc. co.uk. Duchenne Muscular Dystrophy: Research Approaches towards a Cure, available online at www.duchenne-research.com. Foundation to Eradicate Duchenne Muscular dystrophy, Inc., an American website listing scientific research articles on Duchene muscular dystrophy, available online at www.duchennemd.org. Genetic counselling information, available online at www.mda.org.au. Muscular Dystrophy Campaign, review of research advances in Duchenne muscular dystrophy 2003/4, information available online at www.muscular-dystrophy.org. Parent Project Muscular Dystrophy, information including newsletters and up-to-date information from America, available online at www.parentprojectmd.org, including PPMD-produced DVD Laura’s Choice, reproductive options for carriers of DMD (accessed 21/02/07). Parent Project Muscular Dystrophy (2007) Information on current research available online at www.parentprojectmusculardystrophy.org, click on link for DMD Research (accessed 21/2/07).

BIBLIOGRAPHY 243 Parent Project UK, information available online at www.ppuk.org, ‘Search for a cure’, and Research Archive links (accessed 21/02/07). Scottish Muscle Network is a point of contact for all professionals working with people with neuromuscular conditions in Scotland; annual update conferences and details can be obtained online at www.gla.ac.uk. Tremblay, J. P. (2004) Quebec research team announces successful trial of Duchenne muscular dystrophy treatment, information available online at www.cihr-irsc.gc.ca/ e/20567.html. SOME WEB ADDRESSES FOR ADD ADDA Attention Deficit Disorder Association, available online at www.add.org, website for adults with ADD and health professionals. ADDISS, The National Attention Deficit Disorder Information and Support Service – ADHD, Information Services at www.addiss.co.uk, Lessons for Life booklet, avail- able from this site, providing ways to a child’s condition (accessed 15/02/07). Attention Deficit Disorder, information on articles and aspects of management for parents, available online at www.ncpamd.com. Attention Deficit Disorder (ADD or ADHD) with or without learning difficulties, website for parents, available online at www.Ld-add.com (accessed 15/02/07). Attention Deficit Disorder in the UK, available online at www.pavilion.co.uk, provid- ing links with other websites and tips on management (accessed 15/02/07). Attention Deficit Hyperactivity Disorder information on descriptions, diagnosis, treat- ment, research and booklets to download, available online at www.mentalhealth.com (accessed 15/02/07). CHADD, Children and Adults with Attention Deficit/Hyperactivity Disorder, avail- able online at www.chadd.org, for parents, adults and professionals with training information (USA-based) (accessed 15/02/07). DYSPRAXIA ASSESSMENTS Bundy, A., Lane, S. J., Fisher, A. G. and Murray, E. A. (2002) Sensory Integration: Theory and Practice, Philadephia, FA Davis. Frostig, M., Maslow, P., Lefever, D. W. and Whittlesy, J. R. B. (1963) Frostig Devel- opmental Test of Visual Perception, California, Consulting Psychologists Press. Goodenough, F. F. and Harris, D. (1963) The Goodenough-Harris Drawing Test, London, Psychological Corporation. Henderson, S. E., Sugden, D. and Barnett, A. L. (1992) Movement Assessment Battery for Children, London, Psychological Corporation. DYSLEXIA British Dyslexia Association, information and advice; address: 98 London Road, Reading RG1 5AU; helpline telephone number: 0118 966 8271; administration telephone number: 0118 966 2677; information available online at www.bdadyslexia. org.uk.

244 BIBLIOGRAPHY Information on dyslexia services, training, teaching and publications, available online at www.dyslexia-inst.org.uk. Northern Ireland Dyslexia Association, affiliated to the British Dyslexia Association, available online at www.nida.org.uk. Toe by Toe Multi Sensory Reading Manual for Teachers and Parents, available online at www.toe-by-toe.co.uk. SOCIAL SKILLS TRAINING Baker, J. E. (2003) Social Skills Training: For Children and Adolescents with Asperger Syndrome and Social–Communication Problems, London, Jessica Kingsley Publishers. Social Skill Deficits in Autism Spectrum Disorders, information available online at www.iidc.indiana.edu/IRCA/SocialLeisure/socialskillstraining.html. Spence, S. (1995) Social Skills Training: Enhancing Social Competence with Children and Adolescents, Windsor, NFER–Nelson. Students with Learning Difficulties, social skills training using social stories for training, information available online at www.udel.edu/bkirby/asperger/socialcaroolgray. html. USEFUL WEBSITES Backcare: www.backcare.org.uk Calvert Trust: www.calvert-trust.org.uk Children’s Wish: www.childrenswish.org Contact a Family: www.cafamily.org.uk Daily Care Ltd: www.dailycare.co.uk DIAL UK: www.dialuk.info Disabled Living Foundation for fact sheets, training packs and courses: www.dlf.org.uk Disabled Persons Transport Advisory Committee: www.dptac.gov.uk Dreams Come True Charity: www.dctc.org.uk Enable: www.enable.org.uk FABB Scotland: www.fabb.org.uk Happy Days Children’s Charity: www.happydayscharity.org.uk Holiday Care: www.holidaycare.org.uk Independent Living: www.independentliving.co.uk Make A Wish: www.make-a-wish.org.uk Muscular Dystrophy Campaign: www.muscular-dystrophy.org National Association of Swimming Clubs for people with disabilities: www.nasch.org.uk Outsiders: www.outsiders.org.uk Pocket Guide to Manual Handling: www.niso.ie/documents/pcketcards.pdf Relate: www.relate.org.uk Riding for the Disabled: www.riding-for-disabled.org.uk

BIBLIOGRAPHY 245 Royal Society for Disability and Rehabilitation (RADAR): www.radar.org.uk Scottish Disability Sport: www.scottishdisabilitysport.com Scottish Muscle Network: www.gla.ac.uk/muscle Starlight children’s foundation: www.starlight.org.uk The Golden Freeway Project: www.thegoldenfreeway.com The Scout Association: www.scouts.org.uk Toilet Aid – Mini Potti: www.minipotti.co.uk Toilet Aid – Uribag: www.uribag.com/uribag.php Tourism for all UK: www.tourismforall.info Wheel Power – British Wheelchair Sport: www.wheelpower.org.uk When You Wish Upon a Star: www.whenyouwishuponastar.org.uk



Index Access assessment tool 93, 217 Access to Transport 107, 109, 126, 133, Access to Buildings 13, 39, 93, 194 165–176 Airports 109, 171 Bus/Coach 26, 109, 168–9 Bus/Coach stations 169 Car/vehicle 18, 110, 133, 164, 166–8 College/University 26, 93 Ferries/Ships 109, 169 Ferry terminals/Ports 109, 169–70 Trains 109, 170 Home/house 10, 69, 77, 80, 132–41, 222–30 Trams 171 Nursery 13, 89, 92 Underground 171 School 13, 25–7, 68, 85–90, 98, 217 Access to Work 156, 158–9, 161, 166 Train stations 109, 170–1 Accessing the Education 83–97, 125 Access to Education 19, 26, 84–5, 94, 125 Curriculum 19 Access to fixtures and fittings Adaptations Bath 12, 50, 58–9, 135–6, 141–2, Buildings 13, 17 Doors 85, 133–6, Car 18, 68, 70, 164, 167–8 Handles/Sockets/Lights 85, 134, 137 Clothes 51 Lifts 80, 133–4, 170, 194 Housing/home 10, 17, 58, 122, 131–43, 195 Shower 12, 50, 58–9, 135–6, 142 School 13, 17, 85, 89, 95 Sink/Washbasin 42, 51, 86, 134–5 Seating 62–5 Taps/Controls 66, 86, 134–7 Workplace 17, 154, 156 Toilet 12, 32, 49, 89, 95–7, 135, 169 Adolescent 26, 148–50, 153, 185–6, 188 Access to Leisure Adulthood 28, 149, 179, 189 Garden 112, 133 Agencies 5, 14–5, 119–21, 123–7, 154 Holiday accommodation 109, 171 Aggressive behaviour 41, 103, 145 Leisure Complex 21 Airlines/Airports 109, 171, 172 Play/Leisure equipment 19 Anger 24, 27, 29–31, 102–3, 179 Playground 92, 218 Management 103, 105 Swimming pool 92, 111 Angled writing board 87 Tourist attractions 109 Anticipatory grief 175–82 Access to Rooms Anticipated loss 180 Canteen 72, 90, 218, 227 Anti inflammatory effects of steroids 199 Classrooms 13, 68, 84–7, 217 Anti-social behaviour 103 Cloakroom 85 Anxiety 25–34, 101, 108, 147, 189 Corridor 85 Appetite 11, 28, 31–2 Bathrooms 12, 50, 58–9, 95–7, 135–6, Architects 15, 139 Arm rests 64, 69, 208 141–2 Arm supports 11, 46–7, 53, 64, 67, 86 Bedroom 58, 109, 136–7, 142 Asperger’s syndrome 103 Hall 133–4 Assessment 6, 7–15, 29 Kitchen 134 Access 21, 68–9, 77, 93 Reception rooms 137 ADD/ADHD 100–1 Access to school outings 14, 21, 145 Bathing 12, 50, 58–9, 135–6, 141–2 Access to sexual health Information 56

248 INDEX Assessment, cont. Bereavement 27, 177–84 Carers 73–4, 119 Bereavement process 179, 180 Community care 93, 117–20, 128, 160 Bilateral integration 101 Developmental 99, 106, 202 Bi-pap/ C-pap 23, 27, 39 Dyslexia 102 Birth 1, 5, 23, 184, 199 Dyspraxia 101 Blood Sample 2, 3 Employment 15, 155 Body driers 51, 59, 135 Equipment 10–19, 49–54, 77–80, 86–91, Bowels 12, 48, 96 122 Brain 1, 3 Financial 9, 127 Buggy 41, 163 Frequency 15 Buildings 13, 39, 93, 194 Future needs 93 Bullying 25, 101, 145 Housing/ Home 10, 69, 77, 131–8, 140, Bus/Coach stations 169 225–30 Buses 21, 109–10, 115, 145, 168–9, 171 Levels 8, 118 Mobility 10, 173 Call systems 55–6, 137 Neurological 25 Canteen 90 Parking badge/bay 164–5 Cardiac failure 3, 199 Risk 73, 77, 80, 215 Single shared 120 Function 3 Seating 11, 61–70, 167, 205 Management 3 Social circumstances 9 Resuscitation 187 Standardised 7, 8 Cardiology screening 199 School/Nursery 13, 68, 93 Care and Repair scheme 139 Transport 21, 70, 163, 164 Care arrangements 9 Wheelchair 66–8, 173, 193, 202 Care home 122, 126 Care workers 184 Attention deficit disorder (ADD) 100–1 Careers 26, 29, 93, 153–5 Attention deficit hyperactivity Carers 20, 73, 76–80, 118–27, 150, 160 Carers and Disabled Children Act 2000 73, Disorder 100–1 Attention-organisational skills 100 124, 132 Avoidance behaviour 104 Carers (Recognition and Services) Act 1995 Auxiliary school assistant 21, 37, 72, 84, 90, 117, 118, 132 95–7 Carrier 1–4, 199 Cars 18, 110, 133, 164, 166–8, 174–5, Back rests/support 67, 69, 71, 90 Baths 12, 50, 79, 135–6 Adaptations 18, 68, 70, 164, 167–8 Bathing 12, 79, 135, 142, 170 Seats 18, 70, 167 Harnesses/restraint 18, 70, 160, 167 Equipment 17, 50, 78, 135–6 Hoists 18, 167 Bathroom 49, 51, 58–9, 79, 133–6, 141–2 Case studies 21, 34, 57, 71, 80, 95, 106, 114, Bathroom adaptations 17, 42, 135–6, 142 Bathroom door 133 128, 142, 150, 160, 174, 181, 191 Bed 12, 78, 109, 137, 170 Solutions 59, 81, 96 Changing plinth 49, 90, 135 Adjustable/Profiling 19, 54–5, 78, 137 Chaplain 180, 184 Mobility 10 Child Protection 57 Position 12, 28, 54, 55, 58 Children Act 1989 117, 132 Bedrooms 42, 109, 136–7, 187 Children’s hospice 43, 147, 177, 183–92 Befriender 15, 186 Child’s knowledge of Condition 24, 27 Behaviour 25, 28, 99–106, 149, 178 Children (Northern Ireland) Coping/Defence 29–30, 34–5 Order 1995 117 Over protective 24 Children (Scotland) Act 1995 117, 132 Behavioural difficulties 99–106 Chromosome 1–3, 199 Belief individual 45 Chronically Sick and Disabled Benefits 20, 110, 128, 163–4, 171–2 Person Act 1970 117, 132, 166

INDEX 249 Chronically Sick and Disabled Persons Curriculum 19, 26, 83, (Scotland) Act 1972 117 Cutlery 11, 52–3, 91 Chronically Sick and Disabled Persons Day care 9, 122, 125 (Northern Ireland) Act 1978 117 Days out 113 Defective gene 1 Class outings 14, 21, 26, 145 Dependency 3, 24, 34, 53 Classroom 13, 38, 68, 84–5, 101 Depression 28–31, 101, 147 Clinical features 2 Desks 13, 19, 86 Clinical reasoning 83 Deteriorating condition 23, 33, 179, 184–5 Clothing 51–2, 62, 76, 92 Development 19, 25, 99, 101–3, 108, 148–50 Clubs 107, 113, 125, 166 Developmental difficulties 106 Collecting hobby items 112 Diagnosis 2, 23–9, 34, 37, 101, 106, 200 College/University 26, 93, 113, 128, 153, Diet 11–2, 49, 75, 91 Dietician 15, 32, 91 166 Dignity 45, 51, 57, 75, 90, 96 Cognition 1, 14 Dinning Room 72, 90 Communication 5, 75, 84, 104, 108, 156 Direct payments 124 Community Care 15, 117–29 Disabled Facility Grant 132 Disabled person’s rail card 172 Assessments 93, 117–9, 128, 160 Disabled Persons Transport Grant 165 Legislation 117–8, 132 Advisory Committee 109 Managers 118 Disabled toilets 39, 49, 89, 95 Management 118, 127–8 Disabled students 49, 72, 166 Plans 118–21, 126–8, 160 Disabled student allowance 128 Services 19, 45, 117, 119, 120–6 Disabled workers 155 Community Care (Delayed Discharges etc.) Disability access officers 94 Disability benefit 27 Act 2003 132 Disability Discrimination Act 1995 107, 132, Community Care (Direct Payments) Act 1996 157, 166 117, 124 Disability discrimination legislation 153, 159 Community Care and Health Disability employment advisers 155, 156, 161 Disability living allowance 110, 163–4, 166, (Scotland) Act 2002 117 Compassion 29, 33, 178 171–2 Computers 19, 94, 112 Disability Rights Commission 160 Disability sports associations 107 Keyboard 13, 19, 46, 87, 112, Disability symbol 158 Laptop 88, 89 Discrimination107, 153, 157, 159, 166 Concessionary fares 110, 171–2 DNA testing 2, 4 Conflict 32, 45, 76, 104, 119, 148–50 Domestic chores 13, 123 Connexions 154 Doors 17, 85, 133–6, 142, 161 Consent 25, 34, 75, 120–1 Down’s syndrome 105 Contact a Family 57, 109 Dressing 11, 26, 51, 92 Constipation 49, 91, Drinking straws 53 Contractures 3, 16, 54, 61, 67, 111, 147 Driving lessons 164 Coping strategies 24, 29–30, 34 Duty of care 20, 186, 193 Corridors 85, Dyslexia 102 Counselling 122, 123, 186 Dyspraxia 99 Genetic 1–2, 58, 199 Dystrophin 1–3, 99–100, 199 Counsellor 29, 34–5 Cramp 2, 4, 85, 87, Eating and Drinking 11, 31, 52–3, 75, 91, 196 Creatine phosphokinase 2, 3 Education 26, 83–97, 125, 153 Cruise ships 109, 170 Cultural Background 6, 56, 75. Higher education 26, 148–9, 200 Competency 45 Differences and values 57, 118 Diversity 45 Cups 11, 52–3

250 INDEX Education Act 1996 166 Support 9, 34, 123, 183–91 Education (Additional Support for Learning) Stage of acceptance of illness 3, 97, 131, (Scotland) Act 2004 118 141, 190 Education transport 165–6 Family based respite 125 Educational psychologist 14, 102 Family Care Officer M.D. Campaign 15, 93, Educational curriculum 19 Emotions 24–31, 101–4, 140, 148–50, 178–81, 145 Fatigue 2, 16, 88 188 Female 1–2, 26, 199 Emotional impact 23–35 Ferries 169, 172, Financial Assessment 9, 127 on parents 29, 34, 180 Fine Motor Activities 13, 46, 101 on therapist 33 Fire safety 92, 137 Emotional support 9, 174 Floors 77, 86, 133, 135 Emotionally immature 24 Fluid / food intake 12, 31, 49, 75, 89 Employees 76, 80, 159 Football 37–43, 103, 108, 111, 145 Employers 76, 153–60 Footrest/footplates 24, 39, 49, 63, 89 Employment 14, 69, 153–61 Friends 39, 57, 90, 108, 113, 196 Assessments 155 Friendship 113, 146–7, 150, 177, 180, 185 Transport 156, 166 From our point of view Work adjustments 159 Employment Act 160 youths with DMD 37–43 End of life care 183–4, 187, 190 Funding Energy conservation 16, 51, 95 Environment 49, 68, 77, 85, 108, 155, 183 Adaptations 17, 122, 139 Environmental control systems 18, 112, 137 Charity 18, 111 Environmental assessments 12, 21, 25–6, Employment 156, 160 Equipment 18, 47, 59, 69–70 68–9, 77, 195 Holidays 107, 115 Equipment 17, 94, 156 Services 19, 81, 107, 111, 119, 123, 126, 191 Transport 115, 126, 166, 175 Assessment and provision 122 Wheelchair 18, 70, 173 Bathroom 12, 23–4, 50, 135–6 Funeral 33, 179–80 Eating 11, 52–3 Further education 26, 93, 113, 153–4 Education 13, 86–91 Transport 166 Emotional impact 24, 30, 38, 74, 140, 194 Frustration 24–5, 31–3, 101–5, 145 Holiday 110, 171 Future for DMD 199–200 Mobility 10 Future needs assessment\\review 93 Moving & handling 13, 17, 50, 77–80 Future self 148, 179, 181 Postural 16, 54, 61–72, 137 Pressure relief 16, 18, 90 Gene 1–4, 199–200 Toilet 12, 49, 90, 135–6 Gene deletion 2–3 European Health Insurance Card 110 Gene depletion 2–4 Evaluation 20, 22, 69 Gene mutation 2–4, 58, 199 Evidence based practice 7 Gene point mutation 2–4, Excluded 100, 142 Gene therapies 199, 200 Expectations 8, 24, 84, 93, 154 Genetic counselling 1–2, 58, 199 Extensions 42, 138–9, 195 Genetic testing 34 External access to house 133 Geneticist 15, 40–1 Golden freeway Project 112 Family Assessment 8, 131 Gonadal Mosaicism 2 Attitudes 9, 24, 74, 104, 124, 149, 190 Gower’s Sign 2, 4, 23 Composition 9, 141 Graphic skills 87 Emotional impact of condition 9, 23–33, Graphic design 157 188, 190 Grief and Loss 27–8, 177–82 Expectations 8, 24, 62, 119 Grip 51, 52, 53, 87 Relationships 9, 56, 113, 146, 183–91

INDEX 251 Grooming 12, 51 Report form 221 Gym/Physical education 91 Services 15, 122 Support 122 Hall and Stairs 133–4 Hands 11, 28, 30–3, 51–3 Immunocytochemical staining 2 Handler 73, 76, 77 Inclusion 190, Handling Belts 17, 77 Independence 5, 32–3, 105, 148–50 Handouts 19 Independent Living 23, 27, 200 Handrails 17, 85, 89, 95, 122, 133 Independent Living Fund 123, 128, 161 Handwriting 8, 38, 84, 87, 95, 102, 123 Infant 25, 37, 180, 185, Headache 85 Inherited condition 1, 105, 199 Head support/rest 50, 63, 80, 90, 110 Insurance Travel 110 Health and Social Care Act 2001 124 Health Needs 29, 129 Vehicle 70, 174 Health professionals 6, 28, 73, 180, 193 Intelligence 26, 99, 100, 104 Height adjustable equipment 57, 66, 78, 86, Interests 107–14, 124, 154, 185 Internet 107, 109, 112, 146, 197 134, 136 Interventions 15–20 Helen House 183, 190 Interviews 156, 158 Hobbies 14, 27, 112, 155 Isolation 28, 30, 90, 111–2, 136 Hoists 17, 21, 50, 74–9, 133–7, 194 I. T. Equipment 19, 88, 94, 112 Car 167 Job introduction scheme 156 Slings 50, 79 Joint contractures 3, 10, 16, 54, 61, 111, 147 Holidays 32, 107, 109–11, 114, 126 Accommodation 109 Key boards 13, 19, 41, 46, 87–8, 112, 128 Equipment 110 Key Points 3, 20, 34, 43, 57, 71, 80, 94, 106, Medication 110 Personal Care 110 113, 127, 141, 150, 160, 174, 181, 191, 197 Transport 109 Kitchen 134 Home Kyphosis 3, 200 Based respite 125 Meaning of 131 Laboratory tests 2 Seating 11, 68 Learning and behaviour difficulties 10, Home Care Services 19, 123–4 Homework 18, 88, 97, 106 99–106 Hospice 15, 43, 125, 183–92 Leg covers/rest 52, 67 Children’s 43, 147, 177, 183–92 Legislation 73, 117–8, 132, 157 Role of hospice 185 Leisure and play 14, 107–15, 128 Hospital 29, 108, 165, 196 Life limiting condition 3, 23, 27, 184–90 Hospital travel costs scheme 165 Lifespan 199 Play 108 Lifts 17, 80, 133–4, 142 Transport 165 Housing/ home Car 110, 166, 168 Access 10, 69, 77, 80, 132–41, 222–30 Living independently 27 Adaptations 10, 17, 58, 122, 131–43, 195 Lordosis 3 Assessment 10, 69, 77, 131–8, 140, 225–30 Loss 25, 27–34, 177–82 Assessment form 225 Loss of function 11, 45, 178 Associations 58, 139–40, 175 Luque rods 200 Emotional Issues 140–1 Funding 17, 122, 139 Males 1 Initial contact 131 Mattress 12, 16, 55, 59, 78 Legislation 132 Medical overview of DMD 1–4 Location 132 Options 138 Clinical Features 2 Conditions 10, 108, 110, 155, 158 Information 3, 10, 23–9 Equipment 21, 110

252 INDEX Medication 10, 13, 85, 101, 110 Philosophy 6 Mobile arm supports 11, 46, 53, 67, 86, 159 Services 5, 122–3 Mobility 10 Skills Base 201 Work settings 6, 7 Centres 164, 70, 173 Oppositional behaviour 103–4 Model of Human Occupation 146 Motability scheme 110, 164, 174 Paediatrician 34, 193 Motivation 84, 148 Pain 10, 16, 28, 38, 76, 180, 183 Moving & Handling 13, 19, 57, 73–81 Palliative Care 183–191 Palliative rehabilitation 184, 188 Assessment tool 215 Paper stand 87, 94 Basic techniques 74 Paralysis 26, 33, 178–9 Capability of Handler 76 Parents 25–35, 124, 146–51, 180–91 Equipment 13, 17, 50, 77–80 Environment 77 Attitudes 9, 13, 62, 104, 153 Individual needs 75 Expectations 8, 24, 54, 69, 119 Legislation 73 Lifting 31, 74–6, 194 Parents lifting 74–6, 194 Overprotection 24, 32 Training 73, 76 Protective 147 When to introduce 74 Parking 133, 159, 165, 174–5 Mourning process 178 Parking badges 18, 110, 118, 164–5 Muscle Parking Bays 18, 164–5, 174–5, 226 Biopsy 2 Pattern of progression of DMD 46, 83 Power 25, 28, 41, 55, 66, 177–8 Peers 26, 29, 31, 83–6, 113, 145–50, 185–7 Strength 61, 87, 99, 102, 177–8 Group 14, 84, 107, 113, 149 Wasting 1, 3 Relationships 83 Weakness 1, 10, 46, 52, 54, 88 Support 185 Muscular Dystrophy Campaign 7, 42, 47, 67, Pencil skills/grips 87 Pelvic girdle 2, 4 109, 138, 146, 157 Personal activities of daily living 45–59 Personal Care 11–2, 42, 95, 123–9, 160, 185 Neater Eater 53 Assistants 123, 128, 159 Neater snacker 53 Holiday 110 Neater solutions arm support 46–7, 53 Nursery/school 13 Neurologist 15, 93, 196 Physiotherapy 38 Neuromuscular Centre 157 Physiotherapist 15, 54, 146, 173, 182, 190–1, Neuropsychological profile 99 New methods 18 193–5 Non-verbal skills 99 Planning 15, 92, 120 Normal population risk of having affected Play 31, 37, 103, 107–8, 145 Child with DMD 1 Access to equipment 19, 108 Nursery 83, 92 Hospitalised Children 108 Modification 108 Access 13, 89, 92 Ventilated Children 108 Information and advice 25, 34, 93 Playground 31, 38, 92 Transport 165 Positive behaviour policy 145 Positioning 16, 54–5, 88, 108, 178 Occupational Therapy Process 5–22 Postural Management 3, 16, 54, 199 Occupational therapists 5–7, Equipment 16, 55 Seating 16, 61–72 Conversations 193–7 Posture 10, 54, 77, 90, 167, 200 Social services 117–8, 121–3 Preschool 25 Rehabilitation for work 153–4 Pressure relief equipment 16 Occupational Therapy 5–7 Priest 180 Assessment 7–15 Primary school 25, 40, 84, 195 Definition 6 Goals 15 Interventions 15–20

INDEX 253 Privacy 45, 75, 96–7, 125, 137, 148 Assessment 11, 61–70, 167, 205 Problem solving 147, 149 Assessment forms 202 Professionals 6, 14, 98, 119, 120 Car 18, 70, 167 Prognosis 3, 23, 29, 131, 180, 189, 196 Funding 69 Proximal musculature 2 Home 11, 69 Pseudo-hypertrophy 2 Materials 65 Psychologist 34, 101, 196 School 68 Psychosocial impact 23–33 Servicing 70, 174 Puberty 147–8 Secondary school 26, 84, 195 Self care 12, 26, 45–7, 84 Quality of life 5–7, 118, 141, 18–4, 200 Self confidence 141, 186 Self-esteem 25, 96–7, 104, 148, 179 Range of movement 11, 46, 86, 102 Separation 27, 32, 148 Ramps 41, 133, 142, 150, 170 Sexual Health 13, 56–7, 148–9, 186, 200 Relationships 56–7, 149, 200 Bus 169 Shock 25, 27, 29 Car 163, 168 Shoulder girdle 2, Train 170 Weakness 47, 64, 87–8, 91 Recreation 14, 122, 125 Showers 12, 50, 59, 135–6, 143 Relationships 9, 24 Chairs 17, 50, 78 Sexual 56–7, 149, 200 Trolley/bench 78, 135 Relaxation 16, 69 Sinks/washbasins 42, 51, 86, 134–5 Research 100, 199–200 Skin protection 18–9, 61, 76, 79 Respiratory muscles 2, 4 Sleep 12, 32, 54–6, 85 Respiratory failure 3 Studies 27, 200 Respiratory function 3, 12, 85 Systems 12, 16, 55 Respiratory management 3 Sliding Sheets 17, 77, 90 Respite 15, 28 Slings 50, 76, 79–80 Respite Care 19, 124–5, 184–5 Social activities 25, 100, 146, 189, Family based 125 Behaviour 45, 101–3 Home based 125 Circumstances 7, 9 Residential 125 Deprivation 146 Rest 85, 92, 134, 183 Needs 30, 145–51, 183, 185, 190 Restlessness 100–1 Network/circle 9, 113, 146 Risk Assessments 73–4, 77, 215 Skills 31, 102–5, 148, 153 Road Tax 164 Work Services 15, 41–2, 50, 115, 120–6 Worker 15, 42, 173, 184, 191 Scribe 19, 87, 94, 128 Space considerations 89 School Splints / orthotics 16, 19, 38, 51, 63, 199 Speech and Language therapist 15, 99, 102 Adaptations 13, 17, 85, 89, 95 Spinal fusion 3, 27, 50, 90–1, 187, 194, 199, Assessment 13, 25–7, 68, 85–90, 98, 217 Classrooms 13, 38, 68, 84–5, 101 200 Curriculum access 19 Spinal problems 3, 16, 54, 61, 63, Equipment 13, 17, 86–91 Sports 31, 103, 107, 111–2, 185 Outings 14, 21, 145 Storage 59, 90, 134 Primary School 25, 40, 84, 195 Stairs/steps 39, 80, 85, 133–6, 142, 168 Seating 68 Stairclimber 80 Secondary school 26, 84, 195 Steroids 3, 4, 41, 199 Staff 21, 31, 33, 68–9, 92, 145 Steroid therapy 199 Subjects 13, 14, 148, 153, Stress 9, 16, 29, 42, 100–1, 108 Transport 165 Study Questions 22, 35, 43, 59, 72, 80, 96, 97, Scoliosis 3, 67 Seating 61–72 106, 115, 129, 143, 151, 161, 176, 182, 192, Adaptations 62–5 197

254 INDEX Support groups 18, 122–3 Velcro 38, 52, 66 Swimming 92, 111, Ventilation 3, 10, 19, 85, 108 Tables 65–6, 86, 90 Overnight 23, 27, 185, 187, 199 Taps 86, 134–5 Visual Perception 14, 100 Taxis 168, 172 Voice recognition software 89, 112 Teachers 32, 72, 84, 106, 154 Telephone 94, 159, 161 Washbasin 135 Therapeutic relationship 197 Washing (personal hygiene) 12, 26, 50 Timetable 88 Weight 12, 31, 75, 91 Toilet 12, 89 Wet floor shower room 50, 59, 136 Wheelchairs 3, 41, 66–8, 78, 173, 193 Adaptations 135–6 Clos-o-mat hygiene toilet 12, 49, 90, 135 Access 25, 39, 109, 135–8 Equipment 12, 17, 49, 90, 135–6 Funding 18, 70, 173 Geberit hygiene toilet 49 Insurance 70, 110, 174 Routine 49 NHS Wheelchair Service 7, 43, 173 Toileting 12, 25, 31, 47–9, 103, 150 Powered 67–8, 90, 133, 164 Trains 109, 170, 172 Provision 17, 69 Trams 171 Transport 109 Transfers 10, 17, 73–80, 194 Tray 86, 90 Car 70, 167–8 Whizz Kidz 173 Toilet 47–9, 135 Work 14, 29, 73, 77, 93–4, 148–9, 153–61, Side 55, 64 Sit to stand 64, 86 160, 166, 196, 200 Transition 84, 92–3, 154, 188 Adaptations 17, 154–7 Transport 18, 109–10, 125–6, 133, 163–76 Assessment 155 Treatment 5, 7–8, 108, 123 Adjustments 159 Trunk Support 63, 90 Equipment 17, 77, 94, 156–7 Turntables 77 WORKSTEP 155–6 World Health Organisation 184 University 26, 128, 153, 154, 166, 196 Upper-Limb function 11, 46–7, 51–3, 66–7, 86 X-chromosome 1–3, 199 Urine Bottle 48, 97 X-linked recessive inheritance 1–3 X-linked recessive condition 1, 199 Continence Products 47, 187 Youth worker 184, 186–7, 190–1