List of Appendices
Appendix 1 : Intake Child Development Team (CDT) form (also has contact details for referrals/teams) - Who we are, where we are and what do we do?
Appendix 2 : Support groups (DS + non-DS specific); Training/Resources for professionals; Barnet organisations.
Appendix 3 : Red flags for feeding, recommended positioning and the paediatric complex needs and dysphagia speech and language therapy (SLT) service. Leaflets for parents.
Appendix 4 : Haematology guidance and immunology advice
Appendix 5 : Homecare/community paediatric nurses referral form
Appendix 6 : Nutrition and dietetics service (including enteral feeding) – leaflets and referral forms
Appendix 7 : Infographic: Top tips for triaging and treating kids with DS
Appendix 8 : DS specific Growth charts and Inserts for red book (child health record)
Appendix 9 : Early Years SEND Advisor for Down Syndrome - Parents letter (previously Pre-school support teacher, EY SEND)
Appendix 10 : Barnet Breastfeeding Support Referral form
Appendix 11 : Parent’s letter for sharing with families and her feedback after postnatal diagnosis
Appendix 12 : Unusual or recurrent infections and guidance on immunisations with GP and parent letter/template.
Appendix 13 : Sleep, sleep disorders, use of melatonin, referrals to sleep services, support and resources, research and information about oximetry screening, red flags/when to worry.
Appendix 14 : Constipation, Coeliac screening (including HLA typing) and gastroenterological complications
Appendix 15 : a) Neurophysiology (EEG) referral form and melatonin guidance (for EEG usage)
b) Infantile spasms – what to look out for, recognition and treatment and support groups
Appendix 16 : Criteria for RSV prophylaxis
Appendix 17 : Referral to Disabled childrens’ team/social care/ MASH
Appendix 18 : Neonatal guidelines (DSMIG, 2018-9)
Appendix 19 : Paediatric physiotherapy services
Appendix 20 : Thyroid guidance (DSMIG, updated 2020)
Appendix 21 : Atlanto-axial instability info., leaflets for parents, screening test/form for health professionals
Appendix 22 : Dental information and referral form
Appendix 23 : Hearing and audiology pathway
Appendix 24 : Ophthalmology pathway
Appendix 25 : Musculoskeletal complications and Referral form for Orthotics
Appendix 26: The SCERTS® Model
Appendix 26 : a) Communication - Speech and Language therapy
b) Oromotor exercises – research and practical information
Appendix 27 : CAMHS - referral and form, Support for emotional well-being, IAPT for parents.
Appendix 28 : Occupational therapy (OT) services
a) Child development team OT and criteria for paediatric occupational therapy referral. Hand exercises, concentration and attention, sensory processing proprioception, visual and auditory distractibility, Zones of Regulation, tactile hyposensitivity, proprioceptive and example of an OT plan.
b) Social care OT (paediatric)
Appendix 29 : School nursing referral information (including the healthy weight program and enuresis service)
Appendix 30 : Fluid and food thickeners – information and letter for parents and schools
Appendix 31 : Education, mainstream and special schools, Post-16 offer/adult education – professionals that can support training and awareness days, research into education and school options in DS, further reading.
Appendix 32 : Letter to GP about Learning Disabilities Directed Enhanced Services (DES)
Appendix 33 : Managing behavior - Positive Behaviour Strategies (PBS) and Zones of Regulation
Appendix 34 : a) Nutritional advice and snack ideas with low sugar
b) Nutrivene- D and UK perspective
Appendix 35 : Exercise, healthy lifestyle with access and participation
Appendix 36 : Sex and relationship education and pupils with additional needs
Appendix 37 : Integrated Learning Disabilities (LD) Team in Barnet for adults
Appendix 38 : Resources for transition child to adult services
Appendix 39 : Health checklists for people with learning disability
Appendix 40 : Information on Diabetes in Down Syndrome
Appendix 41 : Government policy relevant to SEN and Down Syndrome
Appendix 42 : Additional diagnoses - Dual diagnosis (ASD/DS), autism, regression
Appendix 43 : Down Syndrome Checklists according to age
Appendix 44 : Acute presentations to A and E in Down Syndrome
Appendix 45 : Resources to make hospital visits easier including Makaton signs and pictures
Appendix 46 : Decision making, Mental Capacity Act (MCA) and Learning Disability Register (LDR)