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    • CONTENTS Page No.FOREWORD 3INTRODUCTION 5THE BENEFITS OF AN ASD ACTION PLAN 5HOW THE ACTION PLAN LINKS TO OTHER POLICIES 7HOW MANY PEOPLE HAVE ASD 8KEY ELEMENTS OF THE ASD ACTION PLAN 9CARE PATHWAY FOR ASD SERVICES 10SERVICE REDESIGN 12MONITORING AND EVALUATION 15RESOURCES 15OUR PRIORITIES WITHIN THE ACTION PLAN 15NEXT STEPS 17HOW TO RESPOND TO CONSULTATION 18ASD ACTION PLAN: - Service redesign to improve autism care 21 - Performance improvement 27 - Training and raising awareness 29 - Communication and information 31 - Effective engagement and partnership working 33APPENDICES 1. References and bibliography 34 2. Acronyms 36 2
    • FOREWORD BY HEALTH MINISTER MICHAEL MCGIMPSEYI am extremely pleased to launch the consultation document on AutismSpectrum Disorder (ASD). In doing so, I recognise that there is anurgent need to develop and improve health and social care services forpeople of all ages who are affected by ASD. This Strategic Action Planwill set out the direction for service development and improvement inhealth and social care services over the next three years.This Action Plan acknowledges the importance of partnership workingand has been informed by several pivotal documents including theIndependent Review of Autism Services (in 2008) which was chaired byLord Maginnis of Drumglass. I am most grateful to him and his team andall the individuals, families and voluntary groups who expressed theirviews on how services should be developed.Autism is not always easy to identify; it can present in different ways andin different settings. But it usually involves difficulty in language andcommunication and with behavioural and/or social difficulties. My goal isto see earlier detection and recognition of autism, prompt assessmentand diagnosis, and appropriate intervention and support for individualsaffected by autism, and their families.This will not be achieved without the support and dedication of healthand social care staff who will work to agreed standards and will besupported in their role through training and the development of teambased approaches to working. 3
    • Performance improvement will be a key element of the Plan. Health andsocial care staff will work to an agreed referral pathway and standards toachieve reduction in waiting times for assessment.Support, communication and information for parents and families is a keyelement of the Plan. To ensure consistency of approach to this andother actions requires a regional approach. This regional approach willbe developed through a Regional ASD Group, which will include partnerorganisations and family and carer representation.An additional £2.02million has been secured over the next 3 years tounderpin this Action Plan. Even with these resources, we must ensurethat we direct our help to where it is needed – that is towards frontlineservices; and that we reorganise existing resources to allow greaterflexibility. There will be less emphasis on structures, barriers, limits orprogrammes which divide, rather than provide the services we need.I encourage you to consider the contents of this document carefully andfully engage with the consultation process. MICHAEL McGIMPSEY Minister for Health, Social Services & Public Safety 4
    • INTRODUCTION1. On 26 June 2008 the Health Minister, Michael McGimpsey announced his intention to develop a Strategic Action Plan for Autism Services across Northern Ireland. This Autism Spectrum Disorder (ASD) Strategic Action Plan (2008/9 – 2010/11) covers a broad range of actions intended to improve services for children, adolescents and adults with ASD, and their families and carers.2. Whilst the Action Plan is primarily directed towards health and social care services, it recognises the importance of partnership working to promote a person centred approach to ASD service provision.3. The Action Plan is being published for consultation on the 17th September. Details on how to respond are included with the attached consultation document. The consultation closes on 12th December 2008. Following analysis of consultation responses, the finalised Action Plan will be published in early 2009.THE BENEFITS OF AN ASD ACTION PLAN4. The individual nature of ASD serves to underline the need for a “person-centred approach” to ASD service provision. Individuals, families and carers affected by autism need to become an established part of the process for identifying and organising ASD services which should focus on a “whole life” approach with appropriate intervention and provision of health and social care 5
    • services, education, employment, housing and social security benefits. The spectrum of disorder associated with ASD requires an effective response and must, therefore, include the statutory, private, voluntary and community sectors, each of which will have a role in promoting engagement and co-ordination of services at relevant levels.5. ASD poses many challenges and can sometimes be complex and difficult to diagnose. In addition, it is recognised that there are an increasing number of people being diagnosed with ASD. Therefore, there is a real need now to improve services so that there is earlier recognition and intervention for individuals with ASD and their families. As a general principle, services should be developed based on assessed need. This document sets the strategic policy direction to develop these health and social care services to meet the future needs of individuals and their families. Specifically we will drive change by: - service redesign, to promote a co-ordinated approach to assessment, diagnosis, care and support; - reducing waiting times for assessment, diagnosis and treatment; - developing specialist teams at local level linked to a regional multi-disciplinary group; - placing a clear focus on the development of a regionally agreed care pathway and standards for early referral, assessment, diagnosis and support; 6
    • - performance improvement by having specific time- bounded actions and measurable performance indicators; - promoting training and education to support parents and professionals in the earlier recognition of “alerting signals” to autism and evidence based approaches to assessment, diagnosis and interventions; - improving communication and information provided to individuals and families; and - acknowledging that partnership working within Government and with voluntary/community groups and other agencies is required.HOW THE ACTION PLAN LINKS TO OTHER POLICIES ANDDOCUMENTS6. Preparation of this Draft Action Plan follows publication of a series of documents, including the Independent Review of Autism Services, the Bamford Autistic Spectrum Disorder recommendations and the Bamford Equal Lives Report. These documents, which have informed the process of preparing a Draft ASD Action Plan, can be found on the DHSSPS website. In addition, the Action Plan draws on local, national and international work carried out in this field.7. The Action Plan also recognises that important work is being carried out by health and social care organizations and other Government Departments. The DHSSPS Action Plan on ASD 7
    • acknowledges that effective working and sharing of information and best practice with other agencies and sectors is essential.HOW MANY PEOPLE HAVE ASD?8. Autism is not always easy to identify; therefore, the actual number of people with ASD in our society is not exactly known. However, current estimates suggest that approximately 200 new ASD cases can be expected per year in Northern Ireland. It is also estimated that for every three suspected cases referred for diagnosis and assessment services, one case will be confirmed. In addition to these numbers of new referrals and new cases, there is an unknown number of older cases still to be identified.9. ASD occurs more commonly in boys than girls at a ratio of 4:1, although this varies across the ASD spectrum.10. The evidence available on autism shows that many of those affected by ASD will have other co-existing conditions. Overlapping conditions require an integrated approach to service delivery with sufficient flexibility to address individual needs. These needs continue to evolve throughout the lifetime of the person affected. These factors all contribute to the need to build service capacity, and have an effective structure to promote, monitor and co-ordinate services. 8
    • KEY ELEMENTS OF THE ASD STRATEGIC ACTION PLAN11. The ASD Strategic Action Plan seeks to promote a service which will meet the assessed needs of individuals, families and carers. The plan highlights key actions, timetable for completion, outcomes required and the benefits of each action for individuals and families.12. The Action Plan is organised around 5 key themes: o service redesign to improve autism care; o performance improvement of autism services; o training and raising awareness; o improving communication and information for individuals and families; and o effective engagement and partnership working.CARE PATHWAY FOR ASD SERVICES13. The five themes and underpinning actions are all linked to a care pathway approach which is designed to enhance early recognition, integrated assessment, diagnosis, evidence based interventions and ongoing support. Standards will be developed for key stages along the care pathway and, over the next three years, measurable performance indicators will be developed to drive improvement. 9
    • CARE PATHWAY FOR ASD SERVICESInitial Concerns –E.g. social/language/communication Early support andbehavioural difficulties, general intervention fordevelopmental signals individuals/parents and carers Initial assessment e.g. – Health Visitor, GP, AHPs, social care, educationSuspicion ofAutismStandardisedreferralpathway Specialist Team Assessment Evidence based approaches to history taking, observations and use of ASD diagnostic tools Full discussion with parents/carers Further specialist investigation second opinion for complex cases/investigation of co morbid conditions Diagnosis of type of ASD – full discussion with individual parents/carersInclude postdiagnosticsupport – key workeridentified Co-ordinated care plan: evidence based interventions; social/family needs; transition planning; educational/occupational needs;Language, financial/benefits needs;communication, leisure activitiesbehavioural and socialsupport based onindividual needs Ongoing information and support for individuals families and carers 10
    • 14. The diagram above highlights key stages along the care pathway. It is recognised that parents and professionals need to be aware of the “alerting signals” for ASD and that following initial assessment, usually by a primary care professional e.g. Health Visitor, GP, Allied Health Professional (AHP) or School Nurse, there is a need for early referral to a multi-professional specialist team for assessment. Key individuals within this specialist team could include, speech and language therapists, occupational therapists, clinicians, psychologists and social workers, with input from other specialists as required, based on the needs of the individual; for example, individuals with mental health and/or learning disability needs.15. For complex cases, further investigations may be necessary before a diagnosis of ASD (and its type) is made. Throughout this pathway full involvement of parents and carers is essential and a nominated lead should support the individual and the family.16. Following diagnosis there should be a co-ordinated care plan which documents the specific interventions, therapies, support and training needed for the individual and their family. Included in this will be a recognition of educational/occupational/social housing/financial needs relevant to the individual to be co- ordinated and provided by partner organisations and other agencies.17. Regional standards will be developed for key stages along this care pathway including: 11
    • - initial assessment and referral pathway for specialists assessment; - specialist team assessment and use of diagnostic tools; and - evidence based interventions, therapies and support.SERVICE REDESIGN18. To accomplish the above care pathway, requires partnership working and service redesign. At the heart of this redesign are individuals with autism, their families and carers.19. The diagram on page 14 is illustrative of this person centred approach. A key element of redesign will be the development of local specialist teams and a HSC Trust led local integrated network in each of the 5 Trusts to assist in assessment, diagnosis and interventions.20. A nominated lead Director and co-ordinator will be identified in each HSC Trust. The co-ordinator will drive the local ASD network and will ensure integrated working and the prevention of the “silo effect” across Programmes of Care.21. The local multi-disciplinary network in each Trust will link to the Regional ASD Group, which will be responsible for the development of the care pathway, regional standards and performance indicators. It will also have input into the commissioning of ASD services. Where there is a complex ASD 12
    • case and, with the agreement of the individual and/or parents, this regional group could provide a facilitative role to explore access to other highly specialist services.22. The Regional ASD Group will be accountable to the new Regional HSC Board from April 2009. Through the Regional HSC Board, the Regional Group will communicate with the Department. The DHSSPS will recognise its responsibilities in policy development for autism, the need for partnership working and will link with other Departments and inter-governmental groups, as appropriate. 13
    • REGIONAL ASD GROUPAND LOCAL HSC TRUST ASD NETWORKS DHSSPS LOCAL HSCT ASD NETWORKS With Voluntary & Community Sector Input OTHER LOCAL HSCT ASD NETWORKS LOCAL HSCT ASD NETWORKS AGENCIES With Voluntary & Community Sector Input With Voluntary & Community Sector Input AND SECTORS LOCAL HSCT ASD NETWORKS LOCAL HSCT ASD NETWORKS With Voluntary & Community Sector Input With Voluntary & Community Sector Input REGIONAL ASD GROUP Regional Multi-Disciplinary, ASD Co-ordination and Implementation Group REGIONAL HSC BOARD 14
    • MONITORING AND EVALUATION23. The Action Plan will be subject to ongoing monitoring by the new Regional Health and Social Care Board and will require evaluation to ensure effective implementation and to inform the need for any future resource allocation from 2011/12 onwards.RESOURCES24. Following the announcement of the Independent Review of Autism Services (September 2007), additional resources were secured by the DHSSPS. An extra £2.02million is available to underpin this three year Action Plan (2008/9-2010/11). This forms part of the additional resource of £17million for learning disability services including respite care.25. The Action Plan promotes an approach which directs resources towards front line services rather than administration, and which encourages, wherever possible, the reorganisation of existing service capacity to create new ASD structures and pathways.OUR PRIORITIES WITHIN THE ACTION PLAN26. In summary our priorities are: a. Leadership to effect change by development of the Regional ASD Group with a clear programme of work and the development of a lead director and co-ordinator in each HSC Trust thus preventing “silo” working, and the commencement 15
    • of local ASD networks and development of integrated specialist teams at local level.b. Earlier detection, intervention and improved communication and support to enhance outcomes for individuals, their families and carers.c. Reduction in waiting times for access to assessment, diagnosis and intervention.d. An agreed referral pathway for children with suspected ASD.e. Development of multi-disciplinary, multi-agency approaches to intervention and support recognising the importance of the points of transition, e.g., between adolescence and adulthood, to include the need for signposting and liaison with organizations responsible for education, housing, benefit support, employment and leisure activities.f. Service mapping on current service provision led by the Regional ASD Group to include current workforce, skill mix and use of assessment tools and interventions.g. Improved and standardised data collection to further inform gaps in service provision, future workforce planning and predict future demands.h. Clarification and standardisation of definitions, assessment and diagnostic criteria. 16
    • i. Development of an ASD education and training plan to promote an interdisciplinary approach to training and especially to improve early detection of “alerting signals” of ASD.NEXT STEPS27. In order to progress this agenda we intend to expedite change now by: i. quantifying current waiting times along the care pathway; ii. set clear targets for reduction of the waiting times for ASD; iii. identify local ASD directors and ASD co-ordinators in each Trust with the clear mandate to commence development of a local ASD network; iv. task a lead HSS Board to commence the regional multi-disciplinary ASD group, in advance of the formation of the Health and Social Care Board (from April 2009) to move forward with a prioritised action plan, with particular reference to standardising the care pathway; v. as a first step to (iv) above, the Regional ASD Group will commence service mapping of current service provision; and 17
    • vi. take steps to introduce health visiting in the family home at 24 months of age.HOW TO RESPOND TO CONSULTATION28. This Draft Strategic Action Plan is being published for consultation on 17th September 2008. Everyone with an interest in improving Autism Services is invited to respond. This can be achieved by completion of the attached questionnaire. An Easy-Read version of this and the summary of the Action Plan is also available.29. Responses to the consultation can be sent by email, post or fax to: Hannah Cavalleros Learning Disability Unit, Department of Health, Social Services & Public Safety Room D1, Castle Buildings Upper Newtownards Road BELFAST BT4 3SQ Tel: 02890 522153 Fax: 02890 522500 E-mail: Hannah.Cavalleros@dhsspsni.gov.uk No later than 12th December 2008.30. Key interest groups, health and social care services and other Government Departments are being notified about this consultation. Additional copies are available at 18
    • http://www.dhsspsni.gov.uk/index/consultations.htm. Furtherdetails, including requests for alternative formats, are included inthe consultation response document. 19
    • ASD Strategic Action Plan 2008/09 – 2010/11 Key ThemesS = Service redesign to improve autism careP = Performance improvement of autism servicesT = Training and raising awarenessC = Communication and information for individuals and familiesE = Effective engagement and partnership working 20
    • Theme – Service Redesign to Improve Autism Care (S)ASD Key actions and service need For Action By Outcome Timetable BenefitsAction required forPlan completionPoint & keyRef No milestonesS- 1 Establish the current levels of autism Lead HSC Board Complete service Between 1 Service mapping will have been service provision and Regional ASD mapping of current October 2008 completed to inform regional Group autism service provision and 30 April 2009 approach to autism treatment and to include workforce, skill care, and the standardisation of mix, tools and definitions, tools and interventions used interventions used in health and social care servicesS-2 Establishment of regional ASD group DHSSPS Lead HSC Board 31 December The early commencement of an identified to take forward 2008 integrated ASD Regional Group Create a regional multi disciplinary, multi Lead HSS Board formation of ASD will mean that the structure is in agency ASD co-ordination and Regional Group in place in advance of formation of implementation infrastructure accountable RHSCB from April advance of formation of the new HSC Board, from April to the Regional HSC Board, working in 2009 Regional HSC Board 2009 collaboration with other agencies and (from April 2009). services The ASD Group will provide a forum for interdisciplinary, multi- agency workingS–2 (a) The regional ASD group will:- Regional ASD Regional planning, Develop a Co-ordinate approach to service a) Co-ordinate regional planning and the Group accountable commissioning and co- prioritised action planning using best practice development of ASD specialist teams at to RHSCB ordination of HSC Trust plan by 30 June examples, - e.g., Wraparound local level; specialist teams 2009 21
    • ASD Key actions and service need For Action By Outcome required Timetable for BenefitsAction completion &Plan Point keyRef No milestonesS–2 (b) b) Standardise care pathways across Regional ASD Standardised referral 31 December Clear understanding of pathway Northern Ireland and share examples of Group; pathway for initial 2009 of care, and the services that a best practice Primary Care; and assessment and service user, family or carer can Service Delivery information provided to expect for an individual with a Unit (SDU) specialist teams potential diagnosis of autism Other sectors Agree integrated care pathway for children, adolescents and adults with suspected ASDS–2 (c) c) Promote agreed service standards Regional ASD Development of clear 31 December Agreement on definitions and Group service standards for 2009 criteria for assessment, diagnosis assessment, diagnosis and evidence–based and interventions within interventions for delivery within HSC services HSC servicesS-2(d) d) Horizon scanning – for example, recent Regional ASD Clear mandate to keep Ongoing Translation of best evidence into innovations and developments Group in abreast of innovation practice – for example, NICE, collaboration with and evidence based SCIE and robust guidance on other sectors practice cost–effective ASD treatment and careS-3 At sub regional level, create a local Regional HSC Multi-disciplinary working 31 December This can be a virtual network ASD co-ordination and implementation Board and Trusts in at HSC Trust, 2008 within existing Trust services network in each HSC Trust area. collaboration with recognising the cutting across children’s and the Regional ASD importance of links to adults Programmes of Care. To include: Group other sectors, e.g. education, and other The infrastructure is intended to sectors and agencies promote integrated working and consideration of best practice models such as Wraparound model 22
    • ASD Key actions and service need For Action By Outcome required Timetable for BenefitsAction completion &Plan Point keyRef No milestonesS - 3(a) a) Identification of a lead ASD director in HSC Trusts An existing named Named ASD The ASD director will be each HSC Trust director/assistant director director on the responsible for effective planning in each HSC Trust HSC Trusts’ and service co-ordination of ASD- responsible for ASD websites by 31 related services across all services December 2008 Programmes of Care within the Trust. The director will be responsible to the Senior Management Team of the Trust The ASD director will be a member of the Regional ASD GroupS-3 (b) b) Identification of ASD - co-ordinator in HSC Trusts A named co-ordinator in Named ASD co- The role of co-ordinator will be a each Trust’s Local ASD Network each HSC Trust to ordinator on the new function for existing manager ensure that the various HSC Trusts’ post, accountable to the ASD strands of service websites by 31 director provision communicate December 2008 with each other and with In establishing Local Trust ASD other statutory and non network the co-ordinator should statutory services ensure user/stakeholder involvement, including, for example, involvement in relevant agencies and centresASD Key actions and service need For Action By Outcome required Timetable for BenefitsAction completion & 23
    • Plan Point keyRef No milestonesS- 3 (c) c) Building multi-disciplinary specialist Regional ASD Teams of specialist ASD Baseline current Following mapping of current teams within HSC Trusts by: Group practitioners in all HSC service provision service provision, there will be HSS Boards Trusts providing effective by 27 February further development of specialist - identifying gaps at local level by RHSCB(from 1 April & consistent ASD 2009 teams at local level, to deliver participation in current service mapping 2009) therapies & specialist treatment and care to agreed processes, co-ordinated by Regional ASD HSC Trusts interventions by 31 Identification of standards and care pathway for Group Local ASD December 2009 workforce assessment, diagnosis, Networks requirements in interventions and ongoing - build upon existing Trust specialist teams Contribute to training each HSC Trust support based on assessed need, taking account needs analysis taking area by 30 April of available resources account of existing skills 2009 baseline These teams will need a co- Enhanced teams ordinated training and in place by 31 development plan to address December 2009 service prioritiesS- 4 Adoption of standardized assessment, Regional ASD Standardisation of care 31 March 2010 Promotion of a more consistent diagnosis, intervention and care Group to lead in pathway recognising the approach across NI to the procedures collaboration with needs of individuals and diagnosis & treatment of autism- SDU and HSC existence of other a person centred approach to To include: Trusts complex conditions careS–4 (a) a) Adoption by all HSC Trusts of Regional ASD Standardised referral 30 September Streaming information makes standardised referral processes / protocols Group, HSC Trusts pathway to include 2009 specialist assessment easier and across Northern Ireland for cases where in collaboration agreed information assists in monitoring of waiting there is a suspicion of ASD SDU and RHSCB requirements times Consideration should be given to UNOCINI as a way forwardASD Key actions and service need For Action By Outcome required Timetable for BenefitsAction completion &Plan Point key 24
    • Ref No milestonesS–4 (b) Delivery of seamless care including Local ASD Evidence of care planning 31 March 2010 A focus on the individual and a access to specialist expertise, treatment Networks , Regional process in place to include a multi-agency approach to and support in transition stages from early ASD Group, HSC nominated key worker to co- promote seamless care ordinate interventions and years to childhood, childhood to Trusts in support services at relevant adolescence and adolescence to adult collaboration with life stages of the individual, Through service redesign and hood. To include bespoke care plan for other partners recognising the need for care planning, this will involve not smooth transition and promote effective partnership working and just health and social care, but linkages with other services resource constraints in the also education, employment, system services, supported housing, carer’s assessments and direct Evidence that measures of payments, as appropriate to the IQ and age are not barriers needs of the individual with ASD to co-ordinated care and their familyS–4 (c) Consider need for early package of care Local ASD Individually tailored 31 March 2010 Family support through initial services from initial concern of ASD Networks, Regional packages of care services stages of referral and and/or point of referral to cover the period ASD Group, HSC available to families to assessment, provisional provide initial advice and between suspected/provisional diagnosis Trusts in diagnosis, especially for complex support between provisional of ASD and receipt of specialist services collaboration with diagnosis and the receipt of cases. This should be available and interventions other partners. specialist ASD services regardless of the age of presentation of ASD –i.e. not just Allocation of a key worker in childhood from the MDT to family for support at each key stage, recognising the need for partnership working with other agencies, and resource constraints in the systemASD Key actions and service need For Action By Outcome required Timetable for BenefitsAction completion &Plan Point keyRef No milestones 25
    • S–4 (d) Ongoing and early identification of DHSSPS, Redesign of preschool Included within Early identification of ASD developmental delay in all children, HSS Boards programme carried out Review of SN/HV including ASD, through home based visits RHSCB (from 1 by HVs to include home which is due to by Health Visitors (HVs) around 24 months April 2009), based 24 month review report by 30 Regional Health for of development November 08 All Children Group with full and School Nursing/ Autism awareness implementation Health Visiting training for all HVs no later than 31 Review Group (including those December 2009 undertaking training) to support early identification of ASD 26
    • Theme – Performance Improvement (P)ASD Key actions and service need For Action By Outcome Timetable BenefitsAction required forPlan completionPoint & keyRef No milestonesP-1 Reduction in waiting times from RHSCB (from April Establish current waiting Agree regional Earlier diagnosis of type of ASD identification of initial concerns of ASD 2009) times and at each stage process for to assessment, and from assessment to in the patient journey reduction of There will be an incremental diagnosis of type of ASD, and from SDU agree an incremental waiting times by approach to reduction in waiting diagnosis to treatment and care reduction in these 31 October 2008 times for assessment, diagnosis HSC Trusts waiting times and treatment. Existing backlog cleared The management of the current and all new patients waiting times will be subject to seen within agreed scrutiny by the Service Delivery waiting times Unit, and each Trust will be held accountable for its own performance against baseline.P–2 A focus on performance improvement Establishment of a regional performance Regional ASD Group, Development of a small 31 March 2010 Performance indicators will drive improvement system with specific ASD HSC Trusts to lead in number of measurable improvement and will contribute quality indicators (including mean age of collaboration with SDU performance indicators to the documentation of these diagnosis), taking account of standards and Local ASD covering: improvements at HSC Trust and developed. Networks and agree - recognised standards regional level with DHSSPS and of care; partner organisations -service user and carer satisfaction; and - value for money 27
    • ASD Key actions and service need For Action By Outcome Timetable BenefitsAction required forPlan completionPoint & keyRef No milestonesP–3 Supporting research into ASD services Regional ASD Group, Clear prioritisation of 30 June 2010 Promoting and sharing of best and outcomes in collaboration with research needs in ASD practice, for example, treatment, research network, and for adults, adolescents care and support for adults with national and local and children ASD bodies involved in research activities, for example, education sector 28
    • Theme – Training and raising awareness (T)ASD Key actions and service For Action By Outcome Timetable BenefitsAction need required forPlan completionPoint & keyRef No milestonesT-1 Develop and implement ASD training ASD Regional Group Enhance skill mix in 30 June 2010 A skilled workforce with a common strategy, in collaboration with workforce understanding of criteria for Local ASD Network, assessment, diagnosis and to include : and partner evidence based interventions organisationsT–1 (a) Raising awareness of ASD and sharing Recognised training Promotion of early Identification of Promotion of earlier recognition of examples of best practice providers as agreed recognition of ASD HSC/primary care ASD and appropriate referral to by local ASD training needs by specialist teams networks and Earlier recognition of 30 June 2009 Regional Group, in “alerting signals” and Training provided in-house or via a collaboration with knowledge of referral Identification of suitable external provider providing partner organisations pathway by e.g. GPs, appropriate that it is delivered by professionals health visitors, and training resource who are ‘accredited’ or who have Providers of school nurses by 30 September recognised expertise in ASD undergraduate 2009 /postgraduate education - for Completion of primary and programme by 30 community care June 2010 practitionersASD Key actions and service need For Action By Outcome required Timetable for Benefits 29
    • Action completion &Plan Point key milestonesRef NoT–1 (b) Specialist training for staff in frontline Recognised training Standardisation in use Identification of Promotion of standardised posts to promote harmonisation of providers as agreed of assessment criteria, appropriate approach to assessment, assessments, diagnosis, evidence by local ASD tools and evidence – training resource diagnosis, interventions and based interventions and ongoing support networks and based interventions, by 30 September support for individuals, carers and to individuals and families Regional Group, in recognising the 2009 families collaboration with importance of partner organisations improved support for individuals and parents Completion of Internet based support systems for programme by 30 training parents and professionals June 2010 e.g. Autism Pro, should also be considered 30
    • Theme – Communication and Information (C)ASD Key actions and service need For Action By Outcome required Timetable for BenefitsAction completion & keyPlan Point milestonesRef NoC-1 Communication & information plan ASD Regional Integrated Components of Development and Group in communication and communication plan standardisation of ASD Produce a communication plan to provide collaboration with information plan taking agreed by 31 information available within information to people with ASD, their local ASD networks, account of the needs of January 2009 HSC provided services family and carers, to include: families affected by individuals/families and ASD, and partner the expertise of ASD For full organisations voluntary groups implementation by 31 December 2010C–1(a) Provision of appropriate and timely DHSSPS to lead in Inclusion of appropriate Recommendation to Parents supported with access information to parents in Northern Ireland collaboration with information on age be reflected in the to information to support early about developmental milestones. RHSCB, HSC specific child SN/HV review recognition of potential Trusts and Regional development within process due to developmental delay including ASD Group parent held records with report by 30 difficulties with language, signposting to national November 2008 with communication and/or and international models implementation no behaviour later than 31 December 2009C–1(b) Innovative ways of supporting individuals ASD Regional Use of new electronic 31 December 2010 People with ASD have with ASD taking account of developments Group in technologies and links different communication needs in other countries collaboration with and would benefit from local Trusts’ innovative ways to address networks, with input those needs including access from individuals and to agreed electronic links and families affected by technologies ASD, and partner organisations 31
    • ASD Key actions and service need For Action By Outcome required Timetable for BenefitsAction completion & keyPlan Point milestonesRef NoC– 1(c) Public access to information on disability Development in line Individuals, parents and In line with rolling Over time, this action will and services, including advice and with roll-out of HSC carers know where and out of Health and recognise the importance of information on ASD services, available Health and Care how to access Care centres an integrated approach to through, for example, Health and Care Centres information about provision of information on a Centres disability services range of disabilities, including RHSCB including ASD ASD. It should include relevant information including HSC Trusts Availability of a range of housing, education, citizen’s services of benefit to advice, etc Health Estates individuals/families Agency (DHSSPS) affected by ASD in a Where appropriate, it will act single location; timescale as a “sign posting service” and in line with rolling out of will promote an integrated Health and Care Centres approach to provision of HSC services 32
    • Theme – Effective engagement and partnership working (E)ASD Key actions and service For Action By Outcome Timetable for BenefitsAction need required completion &Plan key milestonesPointRef NoE–1(a) Promote effective working and the DHSSPS Access to, and Regular discussion This action is intended to sharing of information and best engagement with and co-ordinated enhance integration and to practice with other sectors and interested parties, action share information and best agencies to take forward the practice in the interests of ASD Strategic providing appropriate ASD Action Plan services to individuals and their families Outcomes to complement other Government Action PlansE–1(b) Service user involvement in planning, HSS Boards(Regional Evidence of service Structured The recognition that service commissioning and delivery of autism HSC Board from April user, family and involvement in users, families, carers and services 2009) Regional ASD carers involvement commissioning advocacy groups have Group, Local ASD in HSC arrangements for developed expertise on what is Networks, and HSC Trusts commissioning of autism, and co- required to promote effective in autism services ordinated action autism services and care collaboration with other through Regional statutory, voluntary, Group community sectors and local government 33
    • APPENDIX 1ReferencesBamford, D (2006), The Bamford Review of Mental Health and LearningDisability (NI) Autism Spectrum Disorders Recommendations, DHSSPS.Maginnis, K.(2008) Independent Review of Autism ServicesOFMDFM (2006) Our children and young people – our pledge. A ten yearstrategy for children and young people in northern Ireland 2006 – 2016.DHSSPS (pending) Review of School Nursing and Health VisitingDHSSPS (2008), Understanding the Needs of Children in Northern Ireland(UNOCINI)BibliographyBamford D (2005) The Bamford Review of Mental Health and Learning Disability(NI) Equal Lives, DHSSPSDepartment of Education & Science (2001), The Report of the Task Force onAutism, TSO, Dublin.Department of Health (2007) National Service frameworks for ChildrenDepartment of Health, Social Services & Public Safety (2006/07), ProjectFunding – ASD Training in Northern Ireland (unpublished)Eastern Health and Social Services Board (2004), Four Board Paper on thedevelopment of Autistic Spectrum Disorder ServicesKelly G., McConkey R., Casey K., (2007) A strategy for the delivery of autismservices in Northern Ireland, University of UlsterMaginnis, K.(2008) Independent Review of Autism ServicesNorthern Health and Social Services Board (2008) Colouring Lives – A strategyfor autistic spectrum disorders 34
    • Scottish Intercollegiate Guidelines Network (2007) Assessment, diagnosis andclinical interventions for children and young people with Autism SpectrumDisordersSouthern Health and Social Services Board (2004) Southern Health and SocialServices Board Children’s Autism StrategyWelsh Assembly Government (2007), The Autistic Spectrum Disorder (ASD)Strategic Action Plan for WalesWestern Health and Social Services Board (2007) A strategic framework forAutistic Spectrum Disorders Services in the West 35
    • APPENDIX 2ACRONYMSAHP Allied Health ProfessionalASD Autism spectrum disorder. Not an official diagnostic category but a group term covering autism, Asperger syndrome and a category either known as ‘pervasive developmental disorder not otherwise specified’ (PDD-NOS) or ‘atypical autism’DHSSPS Department of Health, Social Services and Public SafetyGP General Practitioner (i.e. Doctor)HSC Health and Social CareHV Health VisitorHSCT Health and Social Care TrustMDT Multi-disciplinary teamNICE National Institute of Clinical ExcellenceNICS Northern Ireland Civil ServiceRHSCB Regional Health and Social Care BoardSCIE Social Care Institute for ExcellenceSDU Service Delivery UnitSEN Special Educational NeedsSN School nurseUNOCINI Understanding the Needs of Children in Northern Ireland assessment toolWRAPAROUND Wraparound Project’ provides tailored services to meet the needs of children and young people with disabilities in the SHSSB area 36