Transition Planning with disabled young people for their

Transition Planning with disabled young people for their adult life

YOUNG ADULT TRANSITION PROJECT October 1996 - April 1999, funded by NHS Executive, R&D Programme (Mother & Child Health) AIM: To explore how inter-agency transition planning can improve services for disabled school leavers in Lewisham and Southwark Ruth Cohen, John Khan, Tony O’Sullivan Optimum Health Trust (Lewisham & Southwark) (Lewisham Primary Care Trust April 2002)

Key research elements • Collation of a profile of disabled school leavers for 1996 and 1997, data from central records: Health/SSD/LEA • Interviews with professionals in key local agencies • Interviews with recent school leavers and carers • Consultation with disabled young people from beginning to end

Disabled school leavers Lewisham & Southwark 1996 + 1997 309 disabled school leavers – with moderate/severe disability • • 3% of school leavers 39% did not have a statement of SEN 48% attended mainstream schools 19% attended residential schools

Disabled school leavers Lewisham & Southwark 1996 + 1997 • 27 students with severe learning disability • all but one had one or more other disabilities • subgroups included high physical dependency and challenging needs • 48 with other severe disabilities • Largest subgroups: severe EBD, sensory impairment • 7 severe chronic medical conditions • 203 with moderate disabilities (NB: disability classification data for 278 of 309)

Key themes 1 Empowerment and participation 2 Reviews and planning process 3 Information 4 Organisational structures 5 Administration 6 Adult services

1 Empowerment & participation Professionals … … espouse this aim but does it happen? Young people and carers … … often feel they aren't offered choices

2. 1 School leaver reviews and planning process · Difficulties in exercising choice · Less inter-agency planning in mainstream + out of borough schools · Focus on immediate post school plans not long term · Lack of continuity and follow-up

2. 2 School leaver reviews and planning process Issues for specific groups: ~ Sensory/physical disabilities or long term medical conditions in mainstream ~ Emotional/behavioural difficulties ~ Out of borough ~ Communication ~ Carers with English as second language

3 Lack of information about services and benefits, and how to access them • For professionals • For young people and carers • Especially where English as second language

4. 1 0 rganisational structures · Barriers between agencies, and between children and adult sections · Different professional ethos and working style of children's and adults' services

5 Administration • Identification of school leavers needing interagency planning • Need for advance notification to adult services, especially if complex service needs

6 Adult services · Restricted range of post school choices · Lack of access to employment & training especially for young people with learning difficulties

1 RECOMMENDATIONS (1999) · Commitment needed at national level to lead change on transition [February 2000 - Connexions] · District level commitment at Chief Officer level to resource inter-agency transition work [Joint commissioning / Green Paper, 2003] · Inter-agency development of new structures with representation of users and voluntary agencies [2001, HAZ transition project] · District inter-agency transition planning groups [Valuing People: ‘transition champions’]

2 RECOMMENDATIONS and CURRENT GOOD PRACTICE · Partnership at all levels between users & professionals · Information strategy - within and between agencies ~ Joint database with user consent ~ Updates by agencies of service information ~ Interpreting and translating provision · Within-agency development work on good practice · jointly commissioned transition officer · Changes in commissioning of services

3 RECOMMENDATIONS and CURRENT GOOD PRACTICE · Flexible/split posts working across school-age and adult teams · Transition ‘team’ of professionals working with young people 15 – 25 years · Advocacy for young people with severe communication difficulties · Key worker at transition for young people with complex disability · Central point of referral and/or advice – the ‘one stop shop’ · Joint inter-agency training on disability and transition

Applying the lessons to meet the challenges • Long-term, serious under-resourcing of children’s services • I-A working takes time & commitment • Change must be shared from outset, not only at implementation

Lewisham: Transition planning for disabled young adults leaving school 1996 – 97 Inter-agency transition planning group: developing inter-agency transition strategy and operational policy 1996 – 99 Do. H-funded research on inter-agency transition planning 2000 - now Inter-agency transition forum re-launched for leavers with severe learning disability 2001 – now HAZ-funded development work 2002 - 03 Inter-agency agreement (+ Connexions) on pan-disability Transition Team Nov 2003 Transition Team Manager appointed !

Modernisation in Lewisham • Disability Modernisation Group • Examination of joint work on disability – – Care co-ordination Transition Lewisham Children and Young People’s Centre Inter-agency ASD coordinating group • IRT and shared ICT processes

How will the Lewisham transition service operate? • Core Transition Team for Complex/Profound/Severe needs – – – Identification of disabled school leavers Application of eligibility criteria Implementing the transition strategy Training Case load of young people with most complex needs • Wider transition team with sessional input – Lead interest in each agency on transition – Facilitating access to agency data – Case load of young people with severe disability • Connexions Service of PAs – All other school leavers with mild/moderate disability and/or SENs

Inter-agency transition team: aims • Identification of disabled school leavers requiring I-A planning • Person-centred planning • Fast track referral processes • Interface protocols with a range of services

Identification of disabled school leavers: population 63, 000 0 -19 • Special Educational Needs Dept • Health Needs Register/SNR • Disability Register • 3500 -4000 school leavers annually – – 160 -200 (4 -5%) all types of disability 200 with statements each year yrs 9 -11 50 -60 (1. 5%) severe disability 15 -20 (0. 5%) complex, multiple disability

Process • All young people 14+ with statement of SEN identified: Year 9 review • Transition Panel bands by level of need • Transition Team for Complex/severe • Connexions transition service for mild/moderate needs • Years 10: mini review to update on changes • Years 11 -14: annual review, leaving

Eligibility • Df. ES educational categories • Functional analysis of impact of disability • Diagnostic codes • Ranking of need by Transition Panel

Core transition team Team membership Funding source Team manager FT Administrator FT Personal advisors 3 x wte Adult social worker. 5 wte Children’s soc wker. 5 wte Connexions/HAZ (via PCT) SSD/LEA/PCT Connexions – post 16 Prospects - special schools Connexions - sited with SEN SSD AWLD team Disabled Childrens Team Nurse specialist. 5 wte funding not identified

Wider transition team Team membership Sessional input Personal advisor, Connexions tbc Child development team medical, nursing, therapy Educational psychologist 0. 5 wte Adult phys dis social worker 0. 2 -0. 3 wte Sensory impairment team, SSD tbc Adult mental health tbc

Inter-agency Transition Forum • • Health, SSD, LEA Connexions Adult learning and phys dis SW teams Adult learning and phys dis therapy Adult mental health Adult Education and Lewisham College Secondary school rep Voluntary sector

Interfaces – – – – – Adult Learning Disability Team Younger Adults Disability Team Hospital specialties CAMHS & adult mental health Adults Sensory Impairment team Local colleges and Special schools Supported Housing Supported employment Voluntary sector support groups

What will be different ? • • • Inter-agency ownership of “Transition” issues Joint working, funding, planning Clarity of purpose from a dedicated specialist team “One stop shop” approach to delivering the service Better targeting of limited resources, less duplication • Improved referral processes • Improved support and information to young people and parents / carers • Person-centred planning

Performance indicators • IA forum identifying disabled students • Effective referral ranking and monitoring • Information pack available for all 14+ with SEN • My Transition Plan in use • IA training on transition, disability, PCP • Coverage of disabled students • User feedback evaluating service