Action - A good start in life

The action outlined below will help achieve this outcome. This work was started under the existing Disability Action Plan. 

4. Priority: Promote disabled people having choice and control over their supports/services, and make more efficient use of disability support funding

4 B: A good start in life: Develop policy options to improve government supports for parents, family and whānau of disabled children aged 0-6 years.

On this page

Progress update

Scope of action

1. Lead
2. Scope
3. Project governance and structure
4. Reporting – key milestones/deliverables
5. Risks
6. Evidence base
7. Related work

Progress update to September 2018

Status: On track - Green

The Steering Group meeting of 20 June 2018 agreed to the three previously-identified GSIL priorities being progressed via Mana Whaikaha in the first instance. GSIL has been working with the Mana Whaikaha local leadership group and the local officials’ group to explore opportunities in the MidCentral region. The Ministry of Education has appointed a Programme Manager to support the interface and alignment between education and Mana Whaikaha, with a particular focus on progressing the GSIL priorities.Action Milestones:

Scope approved at the 11 March 2016 meeting of the Chief Executives’ Group on Disability Issues and Disabled People’s Organisations [complete]

Project participation and governance structure confirmed (February 2016) [complete]

• The Reference Group has been meeting monthly. The last meeting was held on 17 October 2017, with the next one scheduled for 14 November. A Steering Group meeting was held on 14 September, and Working Group members have been invited to attend the upcoming Reference Group meeting, for a presentation and discussion on alignment with Education's new Learning Support delivery model and the Ministry of Health led System Transformation work.

Draft project plan including communications and engagement (February 2016) [complete]

• Project plan signed off by steering group.

Synthesis and publication of past consultation (May 2016) [complete]

• The synthesis of past consultation has now been completed.

Literature review(May 2016) [complete]

• Research completed. This will be incorporated into the GSL Project (Phase 1) report.

Revised timeframes agreed with DPOs [on-track]

• We are waiting to hear who can undertake the role of DPO representative for the Steering Group and Reference Group. An interim contact has been identified.

Progress report and initial advice to government (originally planned for mid-2017) [on track to meet new agreed timeframe first quarter 2018]

• As mentioned above, the Steering Group meeting of 20 June 2018 agreed to progression of the three previously-identified GSIL priorities. These priorities are: an overarching common practice framework, capability building as a catalyst for change, and integrated models of service delivery. The meeting agreed to these being progressed via Mana Whaikaha in the first instance, along with the Review of Child Development Services, and the roll out of the new Learning Support Delivery Model.
• These priorities will be progressed between October 2018 and December 2019. Progress reports are due to the Steering Group in December 2018 and July 2019 and a final report will be made in December 2019.

Parent, family, whānau-led design process complete (30 June 2017) [complete]

• Complete.
• Resource has been printed and shared through members of the Working Group and Reference Group to promulgate findings.

Action research (30 October 2017) [complete]

• Action research to identify what enables or hinders good partnership practice is completed.
• Whole project and detailed report complete.
• Summary report also produced.

Draft for Phase 2 scope (Date TBC) [on track]

• A new plan will be developed by the Working Group covering October 2018 to December 2019. This will be based on the June 2018 Steering Group agreements, referred to above.

Lead: Ministry of Education

Others involved:       Ministry of Health, Ministry of Social Development, ACC; DPOs; and IHC, CCS Disability Action, Autism NZ, Parent to Parent.

DPOs contact: Deaf Aotearoa

Scope of action

Scope approved on 11 March 2016.

Action 4 B: A good start in life: Develop policy options to improve government supports for parents, family and whānau with disabled children aged 0-6 years.

1  Lead

The lead agency for this work is the Ministry of Education.

2  Scope

All government supports and services for parents, family and whānau with disabled children aged 0-6 years are within scope of consideration, including mainstream supports and services.

The supports and services funded or delivered by the Ministries of Health and Education will be a focus, in particular the Ministry of Health funded Child Development Services and Ministry of Education Early Intervention Services. These are the key specialist services for many parents, family and whanau with young disabled children and are often central to giving them a good start in life.

Supports and services delivered by other organisations will also need to be considered to create a comprehensive and well-integrated support system that is easy to access.

The project will develop policy options for addressing a number of known issues, including but not limited to:

• parents, family and whānau being valued and having choice and control
• more timely identification/recognition of need
• more timely access (capacity, eligibility criteria, geographical coverage)
• increased access – not targeted only to very high need
• easier access – good information, less complexity, fewer hoops
• continuity of access over time and when people shift
• services and supports strengths-based and aligned with good practice
• more consistent, coherent and better integrated supports and services.

Policy options identified to address these issues are likely include changes to the supports and services parents, family and whānau access or may access in the future, and the way the system engages with parents, family and whānau.

3  Project governance and structure

Government and Disabled People’s Organisations will work in partnership to achieve desired outcomes.

Allied organisations closely involved with parents, family and whānau with disabled children aged 0-6 years will also be key partners in the work. We propose to work with the following allied agencies in the first instance, but will involve a much wider range of organisations as appropriate over the course of the project:

• Parent to Parent
• CCS Disability Action
• IHC
• Autism New Zealand.

Key government agencies that will be closely involved in this work include the Ministries of:

• Education
• Health
• Social Development
• ACC
• Te Puni Kokiri
• Ministry of Pacific Island Affairs.

We expect that a diverse range of contributors will be identified and engaged as the project evolves.

An outline of the proposed project governance arrangements, and wider project management structure, is attached as Appendix 1. These are outlined below.

Lead agency

As the lead agency the Ministry of Education be responsible for:

• ensuring a collaborative approach is taken across the project
• leading development and management of the work programme and related engagement strategy
• coordinating meetings and undertaking related administration
• ensuring that all parties know what is expected of them and that they deliver what they have agreed to
• coordinating preparation of any working papers
• reporting progress through required mechanisms, in collaboration with other parties as appropriate
• ensuring participants are kept informed of any decisions made, or feedback provided, at the project management level and above that affect the project.

The Ministry of Health is another key agency in this work, due to the importance of child development services and the disability supports funded through vote: Health.

Other government agencies are expected to participate fully to ensure the Disability Action Plan’s shared outcomes are achieved.

Project governance

The project will be subject to the standard governance arrangements in place for all Disability Action Plan projects.

In addition a project-specific Steering Group comprising Government, DPO and NGO representatives will be established to:

• provide advice and guidance to the project team
• ensure that the project is appropriately resourced to complete agreed work to a high quality and within agreed timeframes
• ensure the project delivers within its agreed parameters
• resolve strategic and directional issues between the programme and other projects and business as usual work
• champion the programme with colleagues and external stakeholders and feeding back their perceptions to the Steering Group and project team
• define the acceptable risk profile and risk thresholds for the project
• provide assurance for operational stability and effectiveness throughout the project.

Members of the Steering Group will discuss and provide guidance on the policy options being developed by the project team, and address any barriers the project might encounter that prevent participants from performing effectively and delivering against the agreed project work programme.

The Steering Group will meet at least every three months.

Managers from the participating government agencies will meet at least monthly to provide more frequent oversight and support of the project between meetings of the Steering Group.

Project Reference Group

The Good Start in Life Sector Reference Group (the Reference Group) is the main body of people that will inform, influence and guide the project. This will be achieved through:

• sharing information and perspectives
• discussing and understanding underlying issues
• identifying and exploring opportunities
• reviewing and providing feedback on the work of the project team on a regular and ongoing basis.

The reference group will have mixed representation, including from DPOs and allied organisations, to ensure that the necessary breadth of knowledge, skills and experience are available to the project, and to permit well-informed discussion.

Participants will need:

• relevant experience, expertise, and knowledge
• strengths in working collegially in mixed composition teams
• strong networks including families and/or providers
• capacity to read materials, provide timely feedback and attend meetings and workshops as required

Project team

A small cross-agency project team will undertake to day to day work of the project. It will comprise a small number of individuals will the skills and capacity required to complete the work effectively and efficiently.

The Ministry of Education’s has assigned a dedicated project manager to lead this work.

Costs of DPO and NGO participation

The Ministry of Education is committed to partnering with DPOs and allied organisations to achieve shared outcomes. We understand that this will entail providing reasonable accommodations to enable full participation including easy to read translation and NZSL interpreters if required. The Ministry will make every effort to schedule meetings, and provide any meeting materials, well in advance of meetings.

Where participation is not a core function of a participant’s paid role, a contribution towards the costs of participation may be made, in accordance with State Services Commission guidelines. This will be negotiated on a case by case basis and where appropriate may include:

• taxis
• airfares
• accommodation (if necessary)
• lunch and refreshments
• costs of a support person if required.

4  Reporting – key milestones/deliverables

As mentioned above, this is a large and complex policy project. Due process is required to arrive at robust policy options. It is important not to pre-empt this process by identifying concrete outcomes before the work has been done. A phased approach is proposed for managing the work, as follows:

• Phase 1: Short-term - increasing access to supports and services to ensure outcomes are not compromised for children and families who meet existing access criteria but are currently unable to access the services and support they need in a timely manner. This will include examining options for better coordinating and integrating existing services, including child development and early intervention services.
• Phase 2: Medium-term - a managed pathway for shifting services from historical models of service delivery towards more effective models of service delivery that work better for families.
• Phase 3: Longer-term - developing and testing innovative approaches for better coordinated and well-integrated services for families and children that are easy to access, reflect evidence-informed best practice in and are well-aligned with government policy directions, including more assertive investment focus.
• Phase 4: Long-term operational implementation, scaling up to national delivery.

In practice, thinking will be done on all phases from the outset, but policy advice will be phased as described above. Each report will seek Government agreement to the direction for the next phase of the work. Proposed initial deliverables are set out in the table below. Due dates are all end of month, and indicative. It is expected that deliverables will be provided at the earliest possible opportunity so that progress is not delayed.

It is recognised that Disability Action Plan projects are intended to be funded from within baseline. In the event that opportunities are identified that would depend on additional funding, these would be subject to Cabinet decision and usual Budget prioritisation processes.

Proposed phase 1 deliverables and due date

• Project participation and governance structure confirmed - February 2016
• Draft project plan including communications and engagement - February 2016
• Synthesis and publication of past consultation - April-May 2016
• Literature review - April-May 2016
• Progress report and initial advice to government - June 2016
• Further deliverables dependent on outcome of phase 1 - TBC

 The broad issues we are trying to address are outlined above. Initial advice to Government will provide:

• an overview of current measures to support parents, family and whānau
• further detail on what we collectively believe to be the underlying problems
• an assessment of their impacts and relative priority
• the principles that should guide us in developing policy options to address them
• description of the broad outcomes that should be sought, and indicators that can be used to monitor impacts.

5  Risks

Notwithstanding widespread commitment, there are a number of risks with a project of this nature. The table below outlines key risks and mitigations. A project risk register will be maintained, and will be an integral part of project reporting.

6  Evidence base

There have been many reports over the years that have identified concerns about the ability of parents, family and whānau to access the services and supports they need when they need them, and in a way that works for the family. These include sector consultation processes as far back as A New Deal in1992, the 1995 Review of the Disability Support Needs of Children from Birth to 15 Years and the Needs of Their Families, and independent research such as Just Surviving in 2000 and Best of Care? in 2006.

More recently there has been:

• feedback from IHC and CCS Disability Action on initial work on this action undertaken in 2012-2013, identifying a raft of complex issues and priories for action
• evaluations of the CCS Disability Action navigator service pilots
• a stocktake of Child Development Services
• consultation carried out as part of the Special Education update
• consultation undertaken as part of the Select Committee Inquiry into Dyspraxia, Dyslexia and Autism.

Much of this material reflects the lived experience of parents, family and whānau, although it would be fair to say that Māori and Pasifika families may not be well represented. The proposed project management structure identifies the need to provide opportunities to work with parents, family and whānau, including those from diverse backgrounds such as rural families. We will explore whether there is a need for further targeted consultation.

The research literature contains considerable material on evidence-informed practice for integrated delivery of social services, including much material specific to families with disabled children.

There are models of integrated practice in other jurisdictions that we can learn from, but which would need to be considered in light of the wider New Zealand context.

7  Related work

There is a wide range of work currently underway that relates to or may potential contribute to this action. Some of the major work items include:

• The cross-agency Social Sector Investment Change Programme: 0-5 workstream
• Christchurch and Waikato Enabling Good Lives projects
• The Ministry of Health review of Child Development Services
• The Ministry of Education’s Special Education Update
• Update of the Education Act 1989
• The Disabled Children: Voluntary Out-of-home Placement Review

We are confident that appropriate links to all related work will be made through members of the ‘A Good Start in Life’ project, or their close colleagues, being involved in those pieces of work, and through the coordinating mechanisms of the Disability Action Plan.

Appendix 1: Proposed Governance and Project Management Structure for ‘A Good Start in Life’

The diagram below shows the relationship between the governance of this project and the project management.

The governance consists of Project Steering Group (which includes government agencies, DPOs representatives and other organisations) and a Senior Managers Group.

The project management consists of a Project Steering Group and the Project Team, which will implement the action.  The Project Team will also connect with parents, Maori and Pasefika people in the community.

This action sits under the Disablity Action Plan's governance, which monitors progress regularly.