Children’s Disability Services Reform Programme

Ann Bourke, National Disability Specialist, HSE

Irish Learning Support Association Spring ConferenceLimerick, March 9th 2018

Today’s Objectives

• Background on children’s disability services – Why need for change?

• Progressing Disability Services for Children & Young People

• Current Status of Reform Programme

• National Access Policy

• Disability Act & new AON Standard Operating Procedures

• Health Service role in new DES Resource Allocation Model

Historical development of Disability Services

Delivered by HSE and voluntary organisations, developed over decades for specific cohorts of children with disability

Outcome: Different access criteria for each service

Significant gaps and inequities in access to services – extremes where some children receiving excellent access and others little/no service

Lack of clarity for referrers and families

Mainstream schools varied access to multidisciplinary services depending on service providers in that area

Some service providers are patrons of special schools and provide MDT supports

Children’s Disability Services Reform Programme

Context

• Legislation: Disability Act 2005

• Report of National Reference Group for Multidisciplinary Disability Services for Children aged 5 – 18 (2009)

• National Policy: Transforming Lives – Value for Money and Policy Review 2012

Progressing Disability Services for

Children and Young People (PDS)

Nat Reference Group Report 2009 – 24 recommendations incl

Services as close to child’s home as possible

Clear referral pathways & Skilling up of Primary Care

Restructuring of children’s services into interdisciplinary teams, EI & SA co-located and aligned to Primary Care Networks

Joint working with Education

Access to Specialist Supports

CORE OBJECTIVES OF PDS:

• One clear pathway and equity of access to health services for all children with disabilities according to their need

• Resources used to the greatest benefit for all children and families

• Effective teams working in partnership with parents and Education to support children in achieving their outcomes

Implementation of PDS

What does this require?

Reconfiguration of all children’s disability services staff into Children’s Disability Network Teams (CDNTs) and Specialist support services

An integrated access pathway with Primary Care to provide clear signposting to and through the appropriate services for parents (National Access Policy 2016)

Strong collaborative working between Health and Education & Health to support child and family centred model with focus on transition planning, staff and family training and information sharing.

Establishing CDNTs

Enable Ireland

(P&S)

HSE(Community

SLT)

Brothers of

Charity (ID/Autism)

Children’s Disability Network Teams (CDNT)

Children’s Disability Network Teams

One CDNT providing for all children & young people with complex needs in a defined geographic area, regardless of

the nature of their disability

where they live or

where they go to school.

May be Early Intervention & School Age Teams or 1 CDNT for birth to 18 years with sub-teams 0-6 & 6-18

Establishment of CDNTs - Current Status

PDS Model of Service

Bio psychosocial model

Child and family centred Building on strengths, capacity, existing & new skills Empowering and coaching parents (proven better outcomes for

children) incl. accessing community supports Involving families in goal planning and setting specific to their

child/developing IFSP

Needs led, not diagnosis led

Outcomes focused

Interdisciplinary CDNT working in partnership with families & in close collaboration with schools, communities and other service providers

PDS Model of Service

Move from: traditional model of 1:1 block therapy sessions

Evidence indicates limited skills retention and transfer from ‘clinic’ environment into child’s everyday life

Move to: Supporting & empowering families to learn strategies to work

with their child in their natural environment (3 times more effective)

‘Child/young person is not reliant on intense 1:1 input from “specialists” rather those who surround him/her day to day are empowered to maximise opportunities for growth and development in their everyday environments….. this approach is effective in producing better outcomes’ (Moore, 2011).

PDS Sustainability Depends On…

• Close collaboration with all partners HSE: Disability / Primary Care / CAMHS & Vol Org Service

Providers

Parents/carers of children and young people

DOH

DES & schools, NCSE, NEPS

• Implementation of Framework for Collaborative Working between Ed. & Health incl: Local Ed Health Fora

• Planning for local needs

• Transitions planning for children

• Training for teachers/CDNTs, parents/siblings/carers

Progress to Date• 56 CDNTs established & remaining 82 CDNTs in development

• Communication Strategy: PDS Webpage

Regular PDS Bulletin

Formal Communication Pathways

• Policy Framework for Service Delivery of CDNTs to support consistent implementation of policy

• HSE TUSLA Joint Working Protocol

• AIM implemented in Early Intervention – Disability & Primary Care AIM KPIs introduction Jan 2018 AIM Training Programme in partnership with Early Years Specialists nationally

Progress to Date (2)

• Extensive Suite of National Policy and Guidance documents incl

National Policy on Access to Services for Children with disability or developmental delay

National Prioritisation and Discharge/Transfer policies

Interim Standards for CDNTs & Self Audit Tool

National Guidance on Specialist Supports

Framework for Collaborative Working between Education and Health Professionals

• National Access Policy Training Prog for Disability & Primary Care

• National AON Standard Operating Procedures

• National Conference Working together to support Children and Young People with Disabilities and their Families

National Access Policy

National Access Policy

• Key foundation stone of PDS

• Equity of access for all children with disability or developmental delay

• Primary Care services if needs can be met there: non complex difficulties in functional skills and/or applied skill

sets required for ADLs, learning new skills and social interactions

• CDNT where interdisciplinary team approach required complex difficulties …

• Specialist supports when required for Primary Care & Disability Network Teams

National Access Policy

Primary

CareTeams

Primary Care Teams

Children’s Disability Network

Teams

Child with non-complex needs

Specialist support as needed by Primary Care and Children’s Disability Network Teams

Child with complex needs

Transfer between

services if and when

child’s needs change

Children with disability or developmental delay and their families

Disability ActAON Standard Operating Procedures

AON Standard Operating Procedures

Why change?

What is new?

Disability as defined in the Act:

“A substantial restriction which

Is permanent or likely to be permanent, results in significant difficulty in communication,

learning or mobility or in significantly disordered cognitive processes

And

Gives rise to services to be provided continually to the person, or if the person is a

child, to the need for services to be provided early in life to ameliorate the disability”

Linked to National Access Policy: If a child meets the level of complexity for a CDNT, he/she meets eligibility for AON – there will be some exceptions

Complete Children’s Services Referral Form & age specific Additional Information Form

AON Standard Operating Procedures

Preliminary Team Assessment

2 members of CDNT

60 – 90 mins

Case history discussion

Informal observation

Play based assessment

Screening tools

Formal and informal assessment tools

Discussion with child/young person, identify next steps

AON Standard Operating Procedures

Outcome of Assessment: Identify care pathway - to be included in Service Statement

May include:

Diagnostic Assessment

Interventions

Additional referrals to other services

Disability or no disability?

Nature of Disability Learning

Communication

Mobility

Disordered Cognitive Processes

Extent of Disability

No requirement to provide diagnosis at this point

DES Resource Allocation ModelRole of Health Service

Health provided (Sept 2017)/will provide (Sept 2018) number of children entering mainstream school & who are in/waitlisted for CDNT (or disability services where CDNT not yet established)

From 2019 onwards, Health will provide every Oct the number of children who entered mainstream school that year & who are in/waitlisted for CDNT (or disability service where CDNT not yet in place)

For children with SEN in all other classes, their needs will already be known by the school to inform their school profiling

Health will continue to provide as much support and information as possible to teachers, including reports for SNA process

Thank YouQuestions?

Ann.bourke4@hse.ie

www.hse.ie/childdisability