Suggested Plan

1. British Association for Community Child HealthSense updateCatharine Infield, M.Ed. (Hearing Impairment), Dip MSI (Deafblindness)

2. Suggested Plan • Sense services and referral pathway • Case Studies: • ROP, twin with normal development • Child w aetiology unknown • Young woman with Usher Type 1 • Child w LD + complex needs • Themes arising from case studies • Raffle / Feedback forms

3. Sense • England, Wales and N. Ireland • Adult Services • Children’s Specialist Services • Scotland • Sense International

4. Sense Services • Adults • Day Care • Residential Supported Living • Holidays • Special Events • Needs Assessments • Advocacy / Campaigns / Legal • Children’s Specialist Services • Charitable • Funded • Children’s u 5 services are charitable

5. * 60 Years *Children’s Specialist Services • For families • Information / regional newsletters • Initial visits • Ongoing contact calls • Support for specific issues: • Transition • Getting specialist sensory assessments • Educational placements • Free under 5 services: play group / family days • Children’s holidays • Family conferences • Funded packages / advice / support

6. * 50 Years *Children’s Specialist Services • For professionals: • General information • Leaflets • DVD • Website • School improvement packages • Staff training / support • Information days • One off training events • Conferences • Research / Campaigns / Advocacy

7. Referrals • Deafblind babies, children and teenagers • Children with specific conditions: • CHARGE • Usher • Children with one sensory loss and other significant impairments

8. How to Refer • Families may self-refer • All other referrers must get parental consent • Professionals may refer • On referral form • Essential info: • Confirmation of permission to refer • Child’s name / dob • Parent(s) names / contact details • Child’s condition • Referral can be: • specific • open • You can ask Sense to call the family for a chat

9. Case StudySG now 16 • British ex pat family • X2 parents, 2yr old sib, typical development • Maternal mumps in 1st trimester • Oct 1999: Twin birth at 27wks • B= 1kg S=950g • O2 in headbox • S: jaundice at 7/7 • 48hrs ventilation • S discharged at 1kg 800

10. MSI diagnosis • 15 months: mother concerned about vision • ROP Stage 5 diagnosed at 36 mos • 24 months + mother concerned about hearing Bilateral hearing aids fitted at 30 mos • No specialist advice • 3 years: • No formal communication • Poor overall development • Withdrawn • Rocking • Injured through self abuse (holes in head) • Would not wear hearing aids

11. UK Management • LEA lacked expertise: • No specialist advice / staff • HIU provision not appropriately differentiated • Reluctant to accept guidance / family’s knowledge • Surgical (Tertiary) • CI 5 yrs 8 mos. Contralateral HA • Initially slow progress in listening development • Medical (Local) • Mother felt able to keep returning • Clinical management exploratory • Developed communication • Over time issues tackled and resolved

13. Child’s Views • Need interpreting, not always behavioural • Takes CI sp processor off: experimental • ? Likes sensory experience • Can say ‘I don’t like ….’ • Enjoys verbal recall of pleasant events • Lengthy writing – personal experieces • Strong views: Started school refusing • Enjoys choosing activites • Needs advocate • Starting to self-advocate

14. Parents Views • Educational management / Social care • Early specialist advice is essential • Underpinned early development • First Sense report ‘ very insightful’ • Used training and advocacy services for educational provision, deafblind guidance • Clinical management • Overall less stressful • Not always plain sailing • Resolution from: • Parental persistence • Clinician’s openness • Building relationship / knowledge over time

15. Young woman with Usher 1G Aged 19 • Third born child of the family • One older brother • Mother was a nursery officer • Diagnosed at 1 yr • Referred for CI at 18 mos • X1 CI at 30 mos • Usher suspected but not diagnosed • At home Nursery year • Reception place HIU

16. Second CI • Mainstream secondary • Offered aged 10 • Child declined • Mother called back when G aged 12 • Second CI at 12 + • Good GCSEs • Good A levels • Studying for a degree in Fashion • Parent educator: CICS article CICS Q and A

17. Young Persons Views • I will try to get her permission to forward you copies of her article in the CICS magazine • Do not be afraid • Open discussion is important • Expects to be able to succeed – wants to be a teacher

18. Mother’s Views What she would have liked: • More listening • Acknowledgement that parents know child best • Fewer tests • More respect for parental choices • Clinicians should speak to parents / educators

19. Child w unknown aetiologyAged 9 • Born at term • No appropriate medical support locally • Flew to USA for treatment • X1 CI at 18 mos • Corneal transplant at 24 mos • Returned to UK at 30 mos • Specialist schooling at 4yrs • Consistency of CI use varies • Considered x 2 CI at age 6, declined

20. Child with unknown aetiologyAged 9 years • Lost all vision at 6 yrs • Huge number of 3rd tier paediatricians • Key role of local community pead • Issues with communication and trust at school • Problems with sleep • Problems with diet • Chronic health issues • Loves sensory stimulation • Needs 1:1 interveanor

21. Child’s Views • Views shown largely by behaviour • Behaviour is not typical in clinic….. • Hearing useful for: • Learning / understanding simple spoken language • Behaviour: demonstrates comprehension • Mobility: eg location of people • Motivation: eg: auditory cue to use loo • Loves sensory stimuli • Scooting • Soft play • Trampoline

22. Mother’s Views • Glad to have CI. Declined 2nd CI • Called a halt to opthalmic surgery • Multi sensory learner • Ongoing frustration with schooling • Vital role of interveanor • Constant need to advocate for child • Wants to be: • accepted as the expert on her child • listened to • Key role of community paediatrician

23. Child with Learning Difficulties • First child • Non-sanguinous parents • No overall diagnosis • Hemiplegic • Poor motor development on better side • Useful vision: turns head to look • Profound deafness • Physical health variable, often sick • Later birth of healthy sibling

24. Management of Child • X 1 CI at 30 months, better side • No evidence of hearing development in clinic • Excellent educational provision: • Good specialist MSI unit • Interveanor • In a familiar context demonstrated: • Auditory awareness • Comprehension of simple spoken language • Auditory motivation to mobilise • Auditory motivation to learn • Parents DNA apts • School discussed SW referral (neglect)

25. Child’s Views • …................

26. Mother’s Views • Glad she had CI – was worth the effort • CI made her more interesting to look after • Found consequences of deafblind guidance challenging • Wanted local services

27. What are the themes? • …..........................

28. MSI needs / assessment • Huge clinical challenge • Extent of child’s needs / complexity • Number of apts needed • Size of the supportive team • Typical behaviour seen in / with familiar: • Environment • Routine • Communicative partners • Clinical sensory assessments may not reflect acurate picture

29. Clinical Management Requires time: • To listen to parents • Observe child in familiar context • Establish relationships with families / local staff • EHCP should normally include: • Interveanor • Specialist sensory assessment • Deafblind guidance (statutory requirement)

30. Specialist Services • Children with MSI often need: • Advocating for 1:1 interveanors • Specialist training for school / care staff • Deafblind guidance (statutory entitlement) • Transition / EHC plan advice & advocacy • Can have both: EHC and Transition at 15 + • Needs to be written as one document

31. Raffle and Feedback Thank you!