The Start Strong initiative has focused on the current practices related to early and sustained support for disabled children and their families and in particular an identified need to improve early support for children with disabilities and their families. This initiative built on earlier work developed by CCS Disability Action and funded by the Ministry of Social Development in 2005, the Intensive Flexible Family Support Project.
In this years children’s rights seminars IHC has facilitated two Start Strong seminars in Wellington (March 29) and Auckland (July 1). The Auckland seminar was jointly hosted with the Parent and Family Resource Centre.
The seminars, combined with ongoing discussions with parents, government and non government agencies and comments on the Ning Start Strong website have provided important “stock take” information on what is currently working well and what is not. These issues are not new, they have been longstanding ones. We have come across some good examples of early and sustained supports to children with disabilities and their families but sadly there are also many instances where this is not the case. While there have been improvements some families with disabled children who are older have told us that looking at the situation as it is now there are some areas where they think things have gone backwards.
The seminars have established solid agreement on the need for a comprehensive plan of action to address the significant difficulties and barriers experienced by families and to ensure the best possible outcomes for their children. As identified in the recent Public Health Advisory Committee report there is a need to take action – for all children and their families …………
Increase the visibility of children with disabilities and their families…..
The purpose of the Start Strong Draft Framework for Action is to:
increase the recognition of the rights of disabled children to be included in the community of all children; acknowledge and reaffirm the need to improve early support and advocacy available to children with disabilities and their families;
consolidate commitment from involved parties to work to finalise an agreed action plan to implement measures and actions to ensure all children with disabilities get a strong start to life through child and family centred supports which are timely, sustained of high quality, inclusive and integrated across sectors and agencies; and
ensure that all children with disabilities enjoy their rights to appropriate supports that promote well-being, learning and inclusion.
The focus of this framework is children with disabilities aged 0-8 it should be viewed as the beginning of an integrated, whole of life approach that continues throughout the school years and into adulthood for disabled individuals and their families and support networks.
Commitment is sought to a cross party, whole of government strategy in partnership with non government organisations and parent/family and disabled peoples’ organisations to work together to progress the Draft Start Strong Action Plan to an agreed final detailed action plan and timetable with allocated responsibilities including who will lead the strategic areas.
Why is partnership so important - – will only change if work together better – collaboration between government, non government organisations, disabled peoples/family groups with families with children with a disability.
Its about getting beyond talking the talk to walking the walk. Breaking down silos, building partnerships increasingly recognised – Whanau ora, MSD Community response models – need to extend/move beyond so not just one funding stream. Within disability – mechanism for bringing together and accountability – Ministerial Committee for Disability Issues.
Re-iterate again in context of wider – while there will be some disability specific actions should not be ‘siloed’ as a disability issue.
Children with disabilities are children first and have the same needs, hopes, dreams and rights as other children. Yet how often are children with disabilities treated ‘differently’ and not allowed to dream. How many young non disabled children aspire to be an All Black, a Silver Fern, a rock star, a ballet dancer – and are allowed their dream even though they may not seem to have the physical or musical attributes? Families can be faced with professionals who in their concerns about not conveying ‘false hope’ convey false despair
The varied needs of children with disabilities and their families span several sectors and as reported in the recent Public Health Advisory Committee (PHAC) Report (2010) ‘The Best Start in Life: Achieving effective action on child health and wellbeing’ supports often are not well integrated or sustained resulting in disjointed care and early education. The PHAC report highlighted New Zealand’s low investment in the early years in comparison to international standards and identified significant systemic issues in poorly coordinated policies and service delivery that negatively impacted on all children and their families.
They, however, considered that families of children with high and complex needs or disabilities were among those most affected by such incoherent policies and services having to face navigating their way through inconsistent information and disjointed service delivery.
In the course of the Start Strong seminars and discussions there were some good examples identified where families had early access to information and timely, well coordinated supports were put in place. However, there were also many instances where serious human rights issues for this group of children and their families were reported with inadequate responses to child and family need being made.
These have been long standing issues and include barriers to participating in the community of all children, a lack of outcomes monitoring or the collection of baseline information to inform future planning, and a lack of timely, integrated and sustained responses to their needs, rights, interests and wellbeing. Over the years there have been a number of initiatives, pilots and programmes that have attempted to address the gaps and better join together services and information but often these have failed to either be built upon or sustained.
Within this context need a more integrated approach to service delivery across service systems and building partnerships with families, communities and well child service providers to support the inclusion of children with disabilities and their families. While need a whole of government approach its not all about government or services – community development, building capacity, actions that strengthen families
So that families are not with having to negotiate their way through a maze similar to this diagram put together by Dr Rosemary Marks, paediatrician and presented at the last seminar in Auckland. As said by Rosemary - this was done by someone who works in the system trying to follow what happens and “its as clear as mud!”
Reinforce that this needs to be in the context of “mainstream” well child, early childhood education and childcare
Actions to improve early supports for children with disabilities and their families should be undertaken in the context of the PHAC’s call to better interconnect early childhood policies and programmes in order to improve outcomes for children and their families and embody their recommendations to: strengthen leadership and to champion child health and well being; develop an effective whole of government approach for children; establish an integrated approach to service delivery for children; and monitor child health and wellbeing using an agreed set of indicators.
Whanau ora, Community response model - ‘good fit’ with what is required – collaborative, working together, trust relationships, in local communities – but need to integrate across sectors
Ministerial Committee on Disability Issues – mechanism for visible leadership and accountability – what is being sought fits with the aims of modern disability supports: simple easy entry; self determination; choice; early support; resilient families; community development accessible communities: accepting communities; accessible government; accessible cities contributing citizens
Recently announced Government Taskforce on Early Childhood Education – review effectiveness of early childhood education spending and propose innovative ideas about learning – to report to the Minister March, 2011
Why the theme of connections ……. Captures the key themes identified in the seminars and ongoing discussions with families, government and non government agencies. Connections – better integrated, to supports, information, communities, building and sustaining relationships.
To be further developed, finalised as part of the what is envisaged for next steps, work to be done in 2011
Strategic goal – in each of the four areas – getting, building, sustaining, making connections
What is sought - actions/steps towards improving early supports
Who is involved – we will have missed some and there maybe others you think should be included – part of the discussion in progressing the draft framework
Relevant past/current/proposed initiatives – aim not to canvas all but indicative, again there will be others that we can learn from in finalising the action plan. A number of these examples are drawn from implementation projects resulting from the ASD guidelines
How progress will be measured – those listed at across sector, agency level but also should occur within agencies as part of reflective practice, being a learning organisation, developmental evaluation. How do we know we have been successful? Both quantitative – numbers etc and qualitative – experiences, are processes working as intended, what are the outcomes, what is the impact?
Why this timetable – need to move things forward, these have been issues for far too long, some even say there are aspects of early support that have got worse
Timely with the Public Health Advisory Committee report, Whanau Ora, Community Response Model – building partnerships, collaborative approach, trust partnerships
And with Ministerial Committee Disability Issues, proposed ‘new model’, local area coordination, Special Education Review
To get meaningful change by integrating across sectors, whole of government approach in partnership with NGOs, parent/family and disabled peoples groups…..
Getting connected can be a ‘hit and miss’ affair and it shouldn’t be. Access to assessment, information and early support should be timely. Families and their circumstances vary enormously and this needs to be responded to appropriately. Being in the position of receiving inadequate information or even sometimes there being a lack of information is a situation that parents frequently have talked about as well as often feeling isolated. Many are left to their own devices and embark on a time consuming task of trying to find information about their child’s disability, what is recommended and what services are available.
To achieve the goal (on the slide) what is sought includes Well Child/Tamariki Ora providers have information available for families Families should be given full information about the assessment process and receive a record. Timely assessment that is collaborative and minimises duplication. Information should be easily accessible, up to date and include information about the child’s disability, local well child, community, disability and advocacy services and supports available for the child and family, equipment assistance and any financial entitlements Families should have the option of contact person/coordinator to help them get connected with supports and further information. Recognition of coordinating function needs to be reflected in contracts. (needs to be a step beyond that typically done in NASC service coordination) Flexibility and fair and transparent basis in funded support for disabled children and their families Resources, professional training and support be mandatory for well child and early education providers and specialist assessment teams.
Some relevant initiatives – proposed DHB ASD development coordinator (access to such assistance should be available to all children with disabilities), ASD Family Whanau Outreach Service (Ohomairangi Trust & Autism NZ), NHB & Paediatric Society ‘clinical networks’, resources - Parent to Parent, IHC, PFRC, Down Syndrome etc, ASD Plus: Education for families (IDEA), Early Bird (Autism NZ)
Armed with the knowledge about the benefits of early supports families are often faced with having to negotiate a complicated maze of disjointed services and juggle appointments with multiple professionals and service providers. For some the supports may not be available in a timely manner or maybe not available at all, others may feel their child and family is not welcome or not appropriately responded to by well child or early education or childcare providers.
To achieve the goal (on the slide) what is sought includes An integrated strategy with a whole of government approach – cross sector/agency policy, governance, integrated processes and front line delivery so that integrated, collaborative working is a matter of course – the way things are done Child and family centre support – individually tailored, reflect family/whanau culture, priorities and choices Supported by a flexible funding and contracting model Option of keyworker/coordinator/contact person Improved systems to share information
Relevant initiatives include – Whanau ora, MSD Community Response Model, Early intervention ASD project, ASD Communication and Behaviour Support Service (IDEA, Auckland), CCS Disability Action ‘Supported lifestyles’
Supports, relationships need to be reliable and working in an integrated way sustained. A life cycle approach needs to be used to maintain collaborative working between agencies and across sectors and allow for the intensity and level of support needed that occur for children with disabilities and their families. Typically times of transition such as pre school to school require more information, planning and support and greater liaison between agencies and with families. This requires a systemic framework so that getting good, sustained support is not solely reliant on good will or the efforts of dedicated individuals. Being proactive needs to be emphasised rather than having to be “in crisis” to get help.
To achieve the goal (on the slide) what is sought includes
Sustained investment at government policy level and a life cycle approach to services across government agencies.
Coordination and planning at times of transition to enable seamless transfer.
Funding and contracting that allows time for transfer or hand over between agencies (lead maternity to well child provider, early childhood education centre to primary school).
Information flow at times of transition and resourced transition planning.
Integrated support that continues from home and clinic visits into childcare centres, early childhood education and transition into primary school.
Relevant current and proposed initiatives include: CCS Disability Action’s Supported Lifestyles Pilot Project presented at the Auckland Start Strong seminar, ASD Communication and Behaviour Support Service (IDEA, greater Auckland area), Whanau ora….
Monitoring child health and well being was highlighted in the PHAC (2010) report as a major area in which there needs to be improvement to enable effective data collection and sharing, it is an area that Colleen Brown identified at the last seminar and will talk further about today. Robust and integrated data, both quantitative and qualitative should inform policy development and planning. The PHAC recommendations should be adopted to develop a national set of indicators that reflect the priorities of a whole-of-government approach to children’s health and wellbeing and that are drawn on to inform policy and planning at national, regional and local levels.
Information gathered and analysed about children with disabilities and their families should be a subset of wider information on the health and well being of all children. There is a dearth of available integrated data on children with disabilities and their families and baseline information against which to measure improvements. No one is tracking disabled children as they move through various agencies after birth and providing data collated across sectors to assist coordination between agencies and to check to see parents have the necessary information and support to make informed decisions. There would be considerable benefits to planning and resource allocation both across and within sectors.
To achieve the goal (on the slide) what is sought includes Baseline information should be collected, collated and shared within and across health, social development and education sectors for policy and planning purposes and against which to measure outcomes. National monitoring and ongoing reporting of child health and well being should inform plans and policies at national, regional and local levels. A shared framework for planning and accountability should be developed across government portfolios and programmes and between agencies and sectors; Evaluation of the impact of early support policies and programmes on the lives of children with disabilities and their families should be undertaken Research priorities should be established including consideration of a longitudinal study similar to the Christchurch and Dunedin longitudinal developmental studies.
Relevant current and proposed initiatives include: Four year old well checks, National Health Identifier number, Ministry of Health – SOCRATES system, new National Health Board IT system
Introduction draft framework trish grant start strong seminar 14 october (wellington)
Draft Framework for Action
Thursday 14th October 2010
Duxton Hotel, Wellington
• Start Strong initiative – to improve early
support to children with a disability and their
• Built on CCS Disability Action – ‘Intensive
Flexible Family Support Project’
• Seminars 2010 – Wellington and Auckland,
Ning and discussions with parents,
Government and NGOs
• Agreement on need for Plan of Action
• Recognise - children with disabilities to be
included in community of all children
• Acknowledge / reaffirm - need to improve
early and sustained support
• Consolidate commitment – to work together
to finalise an agreed action plan
• Ensure – all children with disabilities enjoy
their rights to supports that promote well-
being, learning and inclusion
What is Sought?
• What we want to happen now
• Why working together is important
• Not new, longstanding
• Some pockets of best practice
• Identified need for better integration – well
child, early childhood care and education
• Lack of systemic framework
• Additional challenges for children with
disabilities and their families
• PHAC recommendations
• Proposed ‘new model’ and disability action
• Initiatives – Whanau ora, MSD Community
• Reporting – UNCROC & UNCRPD
• Government taskforce on early education
• Ministerial Committee on Disability Issues
Children with disabilities are included in the community
of all children and have a strong start to life through the
provision of child and family centred supports that are
accessible, high quality and sustainable and are
integrated across health, education, social
development and community sectors and agencies
Features & Structure
• Connections – getting, building, sustaining,
• Strategic goal
• Aim – what is sought, who is involved (and
some relevant past / current / proposed
initiatives), how will progress be measured
• 2011 – further develop and finalise the
framework for action and establish review
• 2012 - 2014 – work programmes to
complete necessary changes in order to
implement the agreed action plan.
• 2015 – full implementation achieved
• Easy access to information, assessment,
supports and communities
• With and between families, agencies and
• Timely, quality, integrated and flexible child
and family centred support
• Reliable relationships to maintain integrated
supports and across times of transition
• Information shared and integrated for
planning, monitoring, evaluation and
research at national, regional and local