Outcome 7 - Choice and control

We have choice and control over our lives.

Our future and what needs to happen

When we are young, our families, whānau and carers will be supported to help us grow up. Our views as children and those of our families, whānau and carers will be considered when choices are made about what supports and services we receive and what things work best for us. There will also be respect for the evolving capacities of disabled children, and ensuring their input into decisions that affect them.

As we get older we will make our own choices and decisions on things that affect how we live our lives, including where we live. Some of us may need support some of the time or all of the time. Plans or decisions that affect, or have implications for us, will not be developed without our involvement or consent. We have access to information in ways that help us understand what is happening so that we give consent in an informed way.

Those of us who need support to communicate or make decisions receive it in an appropriate way at the right time and those decisions are recognised and respected. The way this support is provided will be empowering and will help build our confidence. In the rare circumstances when decisions need to be made on our behalf, they are based on the best interpretation of our will and preferences, as opposed to just thinking about what is in our best interests. Needing support does not diminish our independence or our ability to have choice and control over our lives.

We will make informed choices based on what is available, rather than settling for a less desirable option because that is all that is offered to us. We are able to change our mind about our decisions.

Sometimes the decisions we take may expose us to risk. Taking risks is part of the human experience, and it is our right to take risks, learn from our mistakes and live our lives as we see fit. If we need support to understand risks and make decisions, this will be provided in a way that helps us understand all the options and consequences. The times when we are prevented from taking risks will be the exception rather than the rule.

What this means:

Disabled people are consulted on and actively involved in the development and implementation of legislation and policies concerning supports and services that are both specific to them and for the mainstream.
Those who support disabled people to make choices or decisions will have a good understanding of their role and access to information and support to help them do this in an informed way.
Decision-making on issues regarding choice and control over supports and services, in particular those specific to disabled people, is informed by robust data and evidence.

Actions

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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 A: DPOs advise and work with government agencies and the National Enabling Good Lives Leadership Group to support changes to the disability support system, including learning from the Enabling Good Lives approach (particularly its demonstrations) and other initiatives. Key principles of this work are being culturally responsive, strengths based, holistic, involve whānau (whānau ora principles), and an integrated approach.

Progress update to September 2018

Status: Blue - Action completed

This action was previously completed (April 2016), but has now been restarted with further work as the overall transformation is still underway. The following new wording was agreed:

4A: DPOs advise and work with government agencies and the National Enabling Good Lives Leadership Group to support co-design processes with the disability sector to begin a nationwide transformation of the disability support system, starting with people receiving disability support services in the MidCentral region. This will include learning from the Enabling Good Lives approach (particularly its demonstrations) and other initiatives in New Zealand and overseas. Key principles of this work are choice and control, and being culturally responsive, strengths based, holistic, involve whānau (whānau ora principles), and an integrated approach.

Action milestones:

Evidence gathering (March - July 2016) [complete]

The Working Group was made up of disabled people, their organisations and families, the National Enabling Good Lives Leadership Group, providers and government agencies.
They worked together to identify the evidence sources.

Analysing what works and why (August - October 2016) [complete]

The Working Group identified what works in transforming disability support systems, and why based on the available evidence.

Identifying what changes could be made (November - December 2016) [complete]

Working Group undertook a systematic analysis of the evidence of demonstrations of the Enabling Good Lives approach and other innovative approaches by government agencies and disability sector.

Cabinet paper developed [complete]

The Working Group helped inform the development of a Cabinet paper with advice on next steps for transforming New Zealand's disability support system.
The Cabinet paper and minute can be found online at www.odi.govt.nz/nz-disability-strategy/other-initiatives/transforming-the-disability-support-system/

Lead: Ministry of Social Development, Ministry of Health, and Ministry of Education

Others involved: ACC, The Treasury, New Zealand Disability Support Network, Inclusive NZ

DPOs lead: Disabled Persons Assembly

Scope of action

A systematic analysis of the evidence from the demonstrations of the Enabling Good Lives approach as well as other innovative approaches by government agencies and the disability sector will provide the platform to identify the changes needed to the disability support system.

1 Lead

The lead agencies for this work are the Ministries of Health, Education and Social Development.

2 Context

Disabled people, their families and organisations, and service providers have, for many years, advocated that the disability support system needs to be transformed because it is not working as well as it could for disabled people or for Government. Some of the issues identified include:

poor outcomes for disabled people relative to their peers
disabled people having little choice or control over the services they receive
the disabled person’s life becoming focused too much on services and not enough on family and natural supports
fragmentation of services across agencies and boundaries
a focus on contract service specifications rather than outcomes
inconsistent and inequitable levels of funding and types of support
disabled people faced with multiple assessments to access support
increasing costs with new and increased demand for services.

Since 2011, there have been significant developments in relation to government funded social services both here and internationally. These include the social investment approach, Social Sector trials, Whānau Ora and the New Model for Supporting Disabled People. To date, there has been no systematic analysis comparing the effectiveness of the various trials in the disability support system to identify what works and why.

The two small-scale demonstrations of the Enabling Good Lives approach in Christchurch and the Waikato were established in part to provide evidence if test if existing funding, used in innovative ways, would deliver better outcomes for disabled people.

3 Proposed scope

The analysis will focus on identifying the outcomes that could be achieved using an Enabling Good Lives approach, and how these compare with the outcomes currently being achieved for disabled people through other approach across a broad range of measures.

The scope of evidence will include evaluations of the demonstrations in Christchurch and the Waikato, other approaches to disability support developed by families and providers across New Zealand, the New Model for Supporting Disabled People, the Ministry of Education’s trial of using Ongoing Resourcing Scheme funding more flexibly, ACC’s Client Self-Management approach, Whānau Ora, and international evidence such as the evaluation of the trials of the National Disability Insurance Scheme in Australia. Findings will compare the results of recent innovations with the outcomes of disabled people with traditional approaches to obtaining supports and services.

Information about innovative approaches to disability support developed and implemented by families and New Zealand providers will also be collected and analysed. A framework has been developed giving providers guidance about the types of information needed. The National Enabling Good Lives Leadership Group developed the criteria for this framework. The framework was then tested with DPOs and New Zealand Disability Support Network and Inclusive NZ. This framework, along with an online survey, will be posted on the Enabling Good Lives website by 1 April 2016.

There are three key phases for this work, as illustrated below:

Phase 1: Gathering the evidence

March - July 2016: Representatives from DPOs, National Enabling Good Lives Leadership Group, service provider organisations and government agencies will work together to identify the evidence sources

Phase 2: Analysing what works and why

August - October 2016: A working group made up of representatives from DPOs, Enabling Good Lives advisory group, service provider organisations and government agencies will be established to idenfity what works and why based on the available evidence

Phase 3: Identifying what changes could be made

November - December 2016: In consultation with the working group officials will develop advice to the Government on changes that could be made to the disability support system to support disabled people have greater choice and control over their support and lives, which leads to improved outcomes across a range of measures

A working group made up of representatives from DPOs, National Enabling Good Lives Leadership Group, service provider organisations and the lead government agencies as well as the Treasury and ACC. The governance arrangements for the working group will be the Enabling Good Lives Joint Agency Group – which includes two representatives from the National EGL Leadership Group. A DPO representative on the National EGL Leadership Group will attend the Joint Agency Group when any papers are considered. Progress will be reported to the Chief Executives and DPO quarterly governance meetings.

4 Contributors/partners with lead – who is involved in this action?

A working group made up of representatives from the DPO Group , the National Enabling Good Lives Leadership Group, service providers, and government agencies will work together to identify the key lessons from the available evidence about what works and why in relation to disability support. The working group will be consulted with to develop advice to the Government on what changes could be made to the disability support system to support disabled people have greater choice and control.

It is expected that the organisation/groups representatives will be responsible for consulting with their constituent and ensuring their views are provided to the working group.

The Ministries of Health, Education and Social Development are committed to working with disabled people – their families and organisations, Enabling Good Lives advisory groups, service providers, and other government agencies. To enable full participation, reasonable accommodations will be provided. Where participation is not a core function of a participant’s paid role, reasonable costs will be paid in accordance with the State Services Commission guidelines, and could include:

travel costs, including taxis and airfares
accommodation and meals if required
costs of a support person, or New Zealand Sign Language interpreter.

This scope has been developed with a representative from the DPOs and representatives from the National Enabling Good Lives Leadership Group.

5 Reporting - key milestones/deliverables

The Ministry for Social Development will be responsible for reporting every three months to the Office for Disability Issues.

Some of the key milestones for the three phases of this work are outlined below.

Phase 1: Gathering the evidence

Establish the working group: 30 March 2016

Post on the Enabling Good Lives website the guidance, framework and survey for providers and families to share their innovative approaches: 1 April 2016

Analysis and summary of evaluations of innovative approaches, including providing regular summaries of key finding to the working group for their feedback and comments, completed: 30 July 2016

Phase 2: Identifying what works and why

Regular meetings of the working group to discuss the evidence: August – September 2016

Consensus on what works and why and report back to Senior Officials Group completed: 30 October 2016

Phase 3: Identifying the changes that could be made to the disability support system

Prepare and finalise the advice for the Government in consultation with working group and others: 10 December 2016

6 Risks

The key risks to be managed are:

unable to get sufficient evidence about innovative initiatives
the timeframe for this work is undertaken by operational deliveries and/or other Ministerial priorities
failure of the working group to reach a consensus on what works and why
DPOs, NEGL and others do not agree with final advice on how to apply what works.

7 Impact – what are we trying to achieve?

The overarching goal of this work is to develop the evidence basis to inform advice to the Government on what changes could be made to the disability support system to provide disabled people with greater choice and control over their supports and lives. Greater choice and control will achieve improved outcomes for disabled people across a range of measures, and funding for the disability support system will be effective and efficient.

8 Evidence base

Evaluations of innovative approaches to disability supports in New Zealand and internationally have been completed and/or are underway. These will form part of the evidence base, and include reviews and evaluations such as:

Putting People First
the demonstrations of the Enabling Good Lives approach in Christchurch and the Waikato
the New Model for Supporting Disabled People
Choice in Community Living
Whānau Ora
National Disability Insurance Scheme.

9 Related work

There is a wide variety of work underway that either relates to, or has implications for work planned for Action 4(a). It will be the responsibility of the lead agencies to undertake regular environmental scans to ensure the working group have all the information needed to undertake this work.

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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.

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.

Potential risk	Mitigation
Issues complex, wide ranging and inter-connected.	Good information base, collaborative approach Government cross agency / DPO approach.
Current providers may feel destablised.	Provider representatives will be closely engaged in the project. A communications plan and engagement strategy will ensure all providers are well-informed and have the opportunity to contribute.
Government, DPOs and allied organisations working in partnership and achieving consensus may be difficult.	A genuine commitment from the outset is a positive start. The escalation pathway provided through the Governance process provides for resolution of any issues.
Work may not proceed fast enough to make a difference for families already in the system.	Proposed phased approach enables rapid change and building over time.
Implementation costs may not be affordable / acceptable to Government.	Robust advice to Government will provide sufficient information for informed decision-making around scalable options.
A change of Government could result in loss of traction.	Improving supports for parents, family and whānau with children with disabilities is a cross-party priority

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.

A Good Start in Life - diagram

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

6. Priority: Increase the capability of disability support service providers to be of service to disabled people

6 A: Develop and implement effective ways for disabled people and DPOs to provide feedback (both qualitative and quantitative) safely about the quality of services and support and to monitor, evaluate, and scrutinise and make providers accountable to funders for achieving outcomes.

Progress update to September 2018

Status: Completed in October 2016

Action Milestones:

Appointment of a Provider as a result of an open tender process [complete]

Malatest appointed as Provider as a result of open tender process.

Progress reports will be provided on the work of the provider [complete]

Malatest has:

Developed and implemented a survey based on the Schalock Quality of Life Framework which measures satisfaction with 8 domains, i.e. personal development, self-determination, interpersonal relations, social inclusion, rights, emotional well-being, physical well-being, material well-being.
Supported 17 people with disabilities to conduct 332 face to face interviews with people living in Ministry of Health funded community residential services in Wellington, Auckland and Manawatu.
Received 24 responses to the online survey.
35 responses were received from proxies (family / whānau)
Overall quality of life score was 84%
Results will be presented to the Disability Consumer. Consortium and five Disability Support Services (DSS) Provider Forums.

Final report on Community Residential Service User Feedback [complete]

Lead: Ministry of Health

Others involved: Ministry of Education, Ministry of Social Development

DPOs lead: Deaf Aotearoa

Scope of action

This scope of this action was approved by the governance meeting of the Chief Executives' Group on Disability Issues and Disabled People's Organisations on 4 September 2015.

Action: Develop and implement effective ways for disabled people and DPOs to provide feedback (both qualitative and quantitative) safely about the quality of services and support and to monitor, evaluate, and scrutinise and make providers accountable to funders for achieving outcomes.

1 Lead

Ministry of Health

2 Contributors/partners with lead – who is involved in this action?

Advice on this action will be sought particularly from the Disability Action Plan working group members:

Disabled Persons’ Assembly
People First
Enrich Plus
Ministry of Education
Ministry of Social Development.

Other stakeholders that could be involved include:

IHC Advocacy
MOH Disability Consumer Consortium
MOH Maori Disability Advisory Group
MOH Faiva Ora Disability Leadership Group

3 What is the purpose of this action and how will it be implemented?

The purpose of this action is to:

create a mechanism to allow the voices of people with disabilities using government-funded services to be heard directly, regarding the quality of those services
use this information to work with providers to improve the services being delivered and improve satisfaction with the services.

4 What is included in the scope of this action?

In the initial stage, only residential services funded by the Ministry of Health are included in the scope of this action.

It is expected at a later stage that the Ministry of Education and the Ministry of Social Development will also be involved in getting feedback directly from disabled people receiving services funded by their departments. Other Ministry of Health-funded disability support services may also be included within the scope in future.

5 What is excluded from the scope of this action?

At this stage other disability support services funded by the Ministry of Health are excluded from the action. Disabled people using residential services were selected for the initial phase as this is the group with the widest range of communication requirements and it was felt that the range of feedback mechanisms developed for this group would provide an excellent starting point for extending to other service users at a later point.

6 What are the timeframes for implementation?

The Ministry of Health is in the process of procuring a provider to develop feedback mechanisms from disabled people living in MOH-funded community residential services. A Request for Information process was completed in April 2015 and following an open tender process, it is expected that a provider will be contracted to begin this work later in 2015.

7 What resources will the lead and partners contribute?

The lead will manage the work within the Ministry of Health and seek advice from the partners.

8 What governance arrangements are in place for this project?

Governance currently sits with the Group Manager Disability Support Services.

9 Reporting – key milestones/deliverables

What are the key milestones (what activity will be achieved by when) – how will progress on the action be tracked and reported via the Office for Disability Issues to the quarterly governance group meetings?

All of the actions below will be reported by the Ministry of Health DSS representative to the group at their regular meetings:

Appointment of a Provider as a result of the open tender process – September 2015
Progress reports will be provided on the work of the provider
Final report on Community Residential Service User Feedback – 30 June 2016.

10 Impact – what are we trying to achieve?

What are indicators of the action’s intended result/outcomes desired?

Disabled people have access to an independent mechanism to express their views and perspectives in relation to Ministry funded community residential services
Evidenced based data obtained for service development, planning and improvement.
Ministry and providers have a greater awareness and understanding of the needs and preferences of disabled people using residential services.

How will these indicators be measured or evaluated?

Quantitative measures - number of service user participants, number of family/whanau member or caregiver participants, number of residential services involved and participate, % response rate

Qualitative measures – feedback, commentary and views captured from disabled people, family/whanau and caregivers in regards to service provision.

11 Evidence base

Is there any research or information (whether qualitative or quantitative) informing this action?

Putting People First Report 2013

Is there any research or information which represents the lived experience of disability?

Enabling Good Lives Report 2011

12 Related work

Is there any other work in the Disability Action Plan 2014-2018 that this action relates to or which contributes to this action?

No.

Is there any other work (outside of the Disability Action Plan) that this action connects with or which contributes to this action?

This work contributes to meeting the recommendations of the Putting People First Report 2013, which included recommendations relating to the necessity of directly hearing the voice of disabled people using Ministry of Health-funded disability support services, and acting on this to improve the quality and outcomes of these services.

This work is also fundamental to the Ministry of Health’s implementation of Results-Based Accountability. Feedback from disabled people will allow Disability Support Services to know the extent to which the services it funds are contributing to disabled people leading good lives.

United Nations Convention on the Rights of Persons with Disabilities.

Ministry of Health DSS Strategic Plan 2014-2018.

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

6. Priority: Increase the capability of disability support service providers to be of service to disabled people

6 B: Ensure providers are responsive to disabled people and provide choice and tailoring of services. Explore how provider performance should be assessed, including through accreditation, provider performance measurement, and contract monitoring systems. 

Progress update to September 2018

Status: Orange - Minor risks to achieving milestones. Reinstated into action plan.

A scope has been developed for testing with the DPOs and senior officials. Consultation on the scope will be completed by the end of October 2018.

Completion of Ministry of Health Request for Information (RFI) (December 2016) [complete]

RFI closed on 16 September 2016. 21 responses were received.
DSS decided not to proceed with going to tender for new evaluation services due to the potential impact of proposed changes to the regulatory regime arising from the Review of Safety Regulation in Disability Support. When this is finalised, DSS will be in a position to tender for evaluation services that will meet the new requirements.
Hence current contracts with evaluators have been renewed for a further three years to allow time for any changes to the regulatory regime to be understood and implemented.

Training of people with disabilities to be evaluators completed (June 2017)

The working group for this action has met twice to understand the current involvement of disabled people in the evaluation of Ministry of Health- funded disability support services.
Information has also been provided on the Results-Based Accountability outcome measures disability support service providers are reporting on.

Rescope this action as part of System Transformation

A revised scope has been developed for consultation with DPOs by the end of October 2018.

Lead: Ministry of Health

Others involved: Ministry of Social Development

DPOs contact: Deaf Aotearoa

Others: NZDSN, DPA, HCHA

Scope of action

Scope in development.

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

7. Priority: Reduce barriers to disabled people making decisions to determine their own lives

7 A: Ensure disabled people can exercise their legal capacity, including through recognition of supported decision making.

Progress update to September 2018

Status: On track - Green

A report was provided to the Minister for Disability Issues in May 2018 presenting work undertaken on promoting a shared understanding of supported decision making and consideration of the people most likely to be directly affected by it. MSD will develop an engagement plan by December 2018 on a proposed consultation with the community on the shared understanding, which is intended to be run in early 2019. MSD will consult with key stakeholders on the engagement plan.

Connecting with individuals and organisations with an interest and responsibility in relation to Article 12 [on-going]

Information on supported decision-making (July 2016) [complete]

Auckland Disability Law completed information from its hui on supported decision making held on 20-21 April 2016, including information summarising the hui's discussions and three information resources (part funded by the Office for Disability Issues).

Literature review (September 2016) [complete]

Donald Beasley Institute reports on a literature review on evidence and insight from around the world, as well as New Zealand, on implementation of Article 12. For the purposes of this work, priority will be given to exploring practice and practical thinking to support for disabled people's exercise of legal capacity, over examinations of historical approaches/practice (funded by the Office for Disability Issues).

Roundtable discussion (20 February 2017) [complete]

ODI organised a roundtable of key stakeholders active in the legal capacity space to enable sharing of activities planned for 2017 and help maintain relationships.

Report to the Minister for Disability Issues (August 2017) [complete]

Report to the Minister for Disability Issues on progress towards a shared understanding of Article 12 for New Zealand and recommendations for next steps, informed by the February 2017 roundtable discussion.

Read report summary

Further work dependent on decision by the Minister for Disability Issues [unknown]

By December 2018, MSD will develop a plan for community engagement on a shared understanding of supported decision making, which is intended to run in early 2019. MSD will consult with key stakeholders on the engagement plan.

Lead: Office for Disability Issues

DPOs contact: People First

Others: Ministry of Health, and the Human Rights Commission

Scope of action

A revised scope of this action was approved by the governance meeting of the Chief Executives' Group on Disability Issues and Disabled People's Organisations on 19 August 2016.

1 Lead

Office for Disability Issues

2 Context: brief background, what is this action intended to achieve?

This action has been carried over from the 2014 Disability Action Plan. The main changes to the previously agreed scope are updating the milestones and the addition of risks.

Support for the exercise of legal capacity is considered a fundamental right that underpins the exercise of most other human rights. This issue particularly affects people with difficulty with communication and/or understanding information.
The population most likely to need support for the exercise of legal capacity generally includes, but not limited to:

o people with learning disabilities

o people with experience of mental illness

o people with experience of dementia

o people with other kinds of impairment that limits their ability to communicate, understand or retain information necessary for decision making.

3 Proposed scope

What is the purpose of this action and how will it be implemented?

This action will explore what is needed to be done in New Zealand to ensure disabled people can experience their rights under the Convention on the Rights of Persons with Disabilities’ Article 12: Equal recognition before the law.

Analysis and recommendations from the exploration will be presented to the Minister for Disability Issues, in advance of consideration by the Ministerial Committee on Disability Issues.

4 What is included in the scope of this action?

This action seeks to develop a shared understanding for New Zealand on:

what are the expectations of Article 12?
which disabled people are affected by Article 12, and what are their experiences with realising their rights under Article 12?
how do domestic arrangements (including legislation, policies and practice) compare to the expectations of Article 12 and are there any gaps?
what are examples of leading practice (domestic and international) in relation to Article 12?
what is needed to achieve better implementation of Article 12, including options for implementation?

5 What is excluded from the scope of this action?

Implementation of any activity by government agencies or non-government stakeholders in relation to Article 12 is excluded from this action.

6 What are the timeframes for implementation?

Work on this action is expected to be progressed from July 2016 to June 2017.

7 What resources will the lead and partners contribute?

The Office for Disability Issues will dedicate staff time to work on this action.

The Office for Disability Issues has also contributed funding for Auckland Disability Law (in 2015/2016) and the Donald Beasley Institute (in 2016) to carry out work that advances this action.

Reasonable accommodation will be provided to support engagement with stakeholders, such as meetings or travel or their participation in this action’s development.

8 What governance arrangements are in place for this project?

Guidance on this work will be particularly sought from the:

Director, Office for Disability Issues
Ministry of Justice
Ministry of Health
Disabled People’s Organisations involved with this action.

Reports on progress will be made as part of the ordinary Disability Action Plan monitoring process.

9 Is there a need for a reference group to advise on progress with this action?

Key stakeholders will be invited to feedback at key stages of this work. A reference group is not initially expected to be necessary.

10 Contributors/partners with lead – who is involved in this action?

Advice on this action will be sought particularly from:

DPOs: Balance, People First, DPA
Auckland Disability Law
Government agencies: Ministry of Justice, Ministry of Health.

Other stakeholders that could be involved include, as well as others:

IHC Advocacy
Dementia Collective
Age Concern New Zealand
Donald Beasley Institute
Human Rights Commission
Office of the Ombudsman
Lawyers with experience and expertise in cases involving disabled people and their legal capacity.

It is important with this action to reach out to the wide diversity of organisations representing people needing support to exercise legal capacity, as well as experts and professionals with experience of how it works every day.

11 Which organisations, including DPOs, have been involved in drafting this scope? How was the draft scope developed?

This scope has been largely carried over from that previously agreed under the 2014 Disability Action Plan.

12 Which organisations, including DPOs, will be involved in implementing this action?

A wide range of stakeholders will be included in the development of the shared understanding of Article 12, reflecting the diversity of people needing support to exercise their legal capacity.

The Office for Disability Issues will explore whether it will support and/or contribute to a community of interest in relation to Article 12, in order to sustain relationships amongst interested people and enable ongoing discussion.

13 Reporting – key milestones/deliverables

Ongoing	Connecting with individuals and organisations with an interest and responsibility in relation to Article 12.
July 2016	Auckland Disability Law completes information from its hui on supported decision making held on 20-21 April 2016, including information summarising the hui’s discussions and three information resources (part funded by the Office for Disability Issues).
September 2016	Donald Beasley Institute reports on a literature review on evidence and insight from around the world, as well as New Zealand, on implementation of Article 12. For the purposes of this work, priority will be given to exploring practice and practical thinking to support for disabled people’s exercise of legal capacity, over examinations of historical approaches/practice (funded by the Office for Disability Issues).
December 2016	report to the Minister for Disability Issues on progress towards a shared understanding of Article 12 for New Zealand and recommendations for next steps.

Further work will depend on decisions by the Minister for Disability Issues.

14 Risks

What are the risk to progressing this action, and what mitigations will be put in place against those risks?

Risk	Mitigation
The diversity of people covered by Article 12 and the wide range of areas of life impacted on may stall agreement on a shared understanding about Article 12. The different stakeholders may not reach consensus on the value in having a shared understanding.	The point of starting with a high-level shared understanding is to set out a consistent approach to thinking about how Article 12 is applied in different contexts, and to enable identification of areas of commonality across otherwise diverse populations.
Discussion could focus solely on legislative options instead of considering the ordinary life impact on the disabled people.	Discussion could focus solely on legislative options instead of considering the ordinary life impact on the disabled people.
Discussion on the shared understanding could be diverted towards a binary argument of for/against substitute decision making.	A focus on practice, thinking and experience around the world and in New Zealand will help keep the discussion on a shared understanding about Article 12 focused on what is practically beneficial for disabled people, which is situated in a rights-based approach.
Even if a shared understanding is achieved, progress with implementing next steps may not be mandated	The sharing of experiences with this work on Article 12 and by others, as part of supporting a community of interest, will help increase understanding across New Zealand on the need for support for the exercise of legal capacity.

15 Impact – what are we trying to achieve?

What are indicators of the action’s intended result/outcomes desired? There is a shared understanding of the expectations of Article 12 and what is needed to achieve better implementation so that disabled people are better able to exercise their legal capacity on an equal basis with others.

How will these indicators be measured or evaluated? The shared understanding is supported key government agencies, Disabled People’s Organisations, NGOs, and service professionals.

16 Evidence base

What information or data is available that supports the focus of this action? How do you know there is a problem?

There is a lot of information about Article 12, but there is not so much about how support to exercise legal capacity is mandated by governments nor about individuals’ experiences in practice. The United Nations Committee on the Rights of Persons with Disabilities expects New Zealand to progress work on better implementing Article 12.

United Nations Committee on the Rights of Persons with Disabilities, 2014. “General comment number 1 (2014) Article 12: Equal recognition before the law”
Australian Law Reform Commission, May 2014. “Equality, Capacity and Disability in Commonwealth Laws: Discussion paper”.

17 Related work

Is there any other activity, in the Disability Action Plan or other work by government agencies or NGOs that relates to this action?

There are two related actions in the Disability Action Plan:

Action 9 D: Explore how the Mental Health (Compulsory Assessment and Treatment) Act 1992 relates to the New Zealand Bill of Rights Act 1990 and the CRPD.
Action 7 B: Explore the framework that protects the bodily integrity of disabled children and disabled adults against non-therapeutic medical procedures, including the issue of consent. This action will focus initially on options to protect against non-therapeutic sterilisation without the fully informed consent of the individual.

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

7. Priority: Reduce barriers to disabled people making decisions to determine their own lives

7 B: Explore the framework that protects the bodily integrity of disabled children and disabled adults against non-therapeutic medical procedures, including the issue of consent. This action will focus initially on options to protect against non-therapeutic sterilisation without the fully informed consent of the individual.

Progress update to September 2018

Status: Minor risks to achieving milestones- Orange

This project has experienced significant delays due to on-going resourcing issues, competing work priorities, and the change of government.
Two new staff members are now in place to progress the work.
Membership of the Project Reference Group is being finalised.
The first meeting with the Project Reference Group is on 11 July 2018.
The work is likely to focus on non-therapeutic sterilisation, with the scope of the work will be agreed with the Project Reference Group at the first meeting. A reviewed or revised scope and revised schedule will be developed once the scope review is complete.

Action Milestones:

Revised scope to be approved

The scope was originally agreed by DPOs and approved at the 10 June 2016 meeting of the Chief Executives’ Group on Disability Issues and Disabled People’s Organisations.
Given delays to starting the project the scope and focus of the work will be reviewed and agreed with the Project Reference Group, prior to confirmation being sought from DPOs at the next available opportunity.

Reference group Terms of Reference drafted and agreed and reference group set up (end June 2016) [request to be delayed until the new scope and schedule is approved]

Reference group almost set up and first meeting has been scheduled

An initial Terms of Reference has been drafted.
The drafted Terms of Reference will be discussed and confirmed at the first meeting of the Project Reference Group which is scheduled for 11 July 2018.
Membership for the reference group is being finalised.

Test working definitions of key concepts for the project with the reference group (end July 2016) [To be tested with the reference group in July 2018]

Having a shared understanding of key concepts underpinning bodily integrity, non-therapeutic medical procedures and consent is critical to the focus and success of the project.
Testing working definitions will be on the agenda for the Project Reference Group to discuss at their first meeting in July 2018.

Develop a background paper (end October 2016) [Draft paper is being developed which will be shared once complete]

The scope and time frames for the paper will be tested at the first Project Reference Group meeting on 11 July 2018.
The paper is expected to outline the components of, and analyses the effectiveness of, the existing legislative and medico ethical framework (including issues of consent) in protecting the bodily integrity of disabled children and disabled adults against non-therapeutic medical procedures.
In preparing for the work, the Ministry of Health has drafted project information sheets, completed an initial problem definition, undertaken a data exercise to assess the availability of sterilisation data, commissioned a literature review and is undertaking a stakeholder analysis.

Develop and analyse options [Time frame and scope to be confirmed following the first reference group meeting.]

The project will consider options to protect against non-therapeutic sterilisation without the fully informed consent of the individual, with the objective of identifying a preferred option.
The time frames will be informed by the first Project Reference Group meeting.

Report with advice on options to the Associate Minister of Health and the Minister of Justice [timeframe and scope to be confirmed following the first reference group meeting]

The scope and time frames for the report will be discussed and tested at the first reference group meeting on 11 July 2018. It is however anticipated that advice will be provided by the end of 2018.

Lead: Ministry of Health

Others involved: Ministry of Justice

DPOs contact: People First

Scope of action

1 Context: brief background, what is this action intended to achieve?

For many years, disability organisations and advocates have been aware of non-therapeutic sterilisations of disabled children and adults and other compromises of bodily integrity being undertaken without the consent of the person undergoing the procedure. There is anecdotal evidence of disabled people being brought to New Zealand to undergo sterilisation procedures that would not be approved within their own country’s legal and ethical frameworks.

How widespread non-therapeutic sterilisation, without consent, is in New Zealand is difficult to determine. There is no reliable, routinely collated data on the numbers of non-therapeutic sterilisations of children and adults, as such information is recorded only in individuals’ personal medical files.

The legal and ethical framework for consent for people with disability undergoing medical procedures is complex, and, there are concerns that it is out of step with articles 12, 16, and 17 of the UNCRPD.

We understand that medical ethical approval is not required to undertake non-therapeutic sterilisations of children and adults.

For adults (over 18) the Protection of Personal and Property rights Act (known as the 3PR Act) is used to seek family court intervention for non-therapeutic sterilisations of children and adults without consent. There are concerns relating to the operation of the Act, including assessment of competency, lawyers acting on behalf of people without meeting them, and a lack of reporting on the Act’s use. The Courts are operating within the wider societal context of, and may share, a low level of understanding of the rights of disabled people under the UNCRPD.

In New Zealand there is no oversight by the courts of sterilisation without personal consent of learning/intellectually disabled people under the age of 18. The Care of the Child Act gives parents (or guardians) the right and duty to act in their children’s best interests. There has been little debate in New Zealand about the rights of disabled children and whose rights are paramount when there are competing rights or the best interests of the child are in dispute.

The United Nations Committee on the Rights of Persons with Disabilities concluding observations noted its concerns that parents may give consent for the sterilisation of their disabled children and that courts may make orders that adults undergo sterilisation without the individual’s consent. The Committee recommended that the New Zealand government enact legislation prohibiting the use of sterilisation of boys and girls with disabilities, and of adults with disabilities, in the absence of their prior, fully informed and free consent.

The project will explore the existing framework to protect children and adults with disabilities against medical procedures that are non-therapeutic and to which they have not consented, focusing initially on options to protect against non-therapeutic sterilisation.

This is a new action.

2 Proposed scope

The project will identify the components of, and analyse the effectiveness of, the existing legislative and medico-ethical framework (including the issue of consent) in protecting the bodily integrity of disabled children and disabled adults against non-therapeutic medical procedures.

The deliverable (under the 2015 DAP) is advice to Ministers on options to protect against non-therapeutic sterilisation without the fully informed consent of the individual.

The scope includes:

reaching a working definition for non-therapeutic medical procedures and non-therapeutic sterilisation for the purposes of this project
reaching a working definition for bodily integrity for the purposes of this project
identifying the components of, and analysing the effectiveness of, the existing legislative and medico ethical framework (including issues of consent) in protecting the bodily integrity of disabled children and disabled adults against non-therapeutic medical procedures, as per the working definitions arrived at (4.2.1)
identifying and analysing options to protect against non-therapeutic sterilisation without the fully informed consent of the individual. Options in addition to changes to the legislative and medico-ethical framework are within scope.
advising Ministers on the options.

The scope of this current DAP project excludes:

Considering the wider issues of disabled people’s choice, control, and autonomy (including consent issues) outside of the area of non-therapeutic medical procedures.
Implementing options identified within this project.

3 Timeframes for completion

Report with advice on options to the Associate Minister of Health and the Minister of Justice by the end of June 2017.

4 What resources will the lead and partners contribute?

The project will be structured as follows:

Establishment phase: in this phase of the project (before the reference group is established), People First New Zealand Inc. – Ngā Tāngata Tuatahi will co-ordinate gaining input from disabled people. The process for gaining input from DPOs, in addition to those on the reference group, throughout the project will be decided in consultation with the DPOs.
Project working group – as project lead the Ministry of Health will project manage, draft background paper, draft options and analysis, and develop advice to Ministers on the options, calling on expertise of Disabled People’s Organisations (DPOs) and subject specialists as required. Ministry of Health will provide 0.5 EFT senior policy analyst to lead the project. Ministry of Justice to provide legal expertise in analysing existing frameworks and proposed options and reviewing project documents.
Project reference group will inform, influence, and guide the project. The reference group will advise on: clarifying the existing legal and ethical framework; identifying, developing and analysing options; and assist with disseminating draft options amongst their groups and networks for testing and feedback. Membership will include expertise from DPOs, Parent to Parent, and on New Zealand’s legislative and medico-ethical framework relating to disabled people’s choice and control in undergoing medical procedures. Ministry of Justice will attend reference group meetings.
Project Governance - existing governance structures in Ministry of Health and Ministry of Justice will be used, and decisions directed to the Disability Action Plan governance: DPOs Group, Senior Officials Group, and the Chief Executives’ Group on Disability Issues.
Ministry of Health will cover costs for the reference group meetings, including reasonable accommodations for accessibility, venue hire, and travel as needed.

5 Contributors/partners with lead – who is involved in this action?

Ministry of Health lead with Ministry of Justice support in analysis, drafting, and reviewing.

The terms of reference and membership for the project Reference Group is to be confirmed. Membership will include nominees from DPOs and Parent to Parent.

Ministry of Health, Ministry of Justice, and People First New Zealand Inc. – Ngā Tāngata Tuatahi have been involved in drafting this scope.

Ministry of Health, Ministry of Justice and DPOs (with initial co-ordination by People First New Zealand Inc. – Ngā Tāngata Tuatahi), will be directly involved in implementing this action. Wider involvement from Parent to Parent, and subject experts will be gained through the Project Reference Group.

6 Reporting – key milestones/deliverables

The lead agency is responsible for reporting every three months to the Office for Disability Issues, as requested, on progress against milestones listed in this section.

reference group Terms of Reference drafted and agreed and reference group set up by end June
test working definitions of key concepts for the project with the reference group by end July
develop a background paper that outlines the components of and analyses the effectiveness of the existing legislative and medico ethical framework (including issues of consent) in protecting the bodily integrity of disabled children and disabled adults against non-therapeutic medical procedures, by end October 2016
develop and analyse options to protect against non-therapeutic sterilisation without the fully informed consent of the individual, with the objective of identifying a preferred option by end March 2017
Report with advice on options to the Associate Minister of Health and the Minister of Justice by end of June 2017.

7 Risks

What are the risks to progressing this action, and what mitigations will be put in place against those risks?

Risk	Mitigation
Development of options may exceed the desired timeframe.	Ensure everyone involved is aware of the timeframes in advance, and when they will be expected to contribute
Members of project working and reference groups are unable to reach agreement on options to be presented to Ministers.	The Disability Action Plan Governance process will be asked to provide guidance.
Content of project provokes strongly held positions and views.	Involve range of perspectives, expertise, and experience in project through the reference group and wider networks.

8 Impact – what are we trying to achieve?

Outcome is development of high quality advice for Ministers on an approach to protect against non-therapeutic sterilisation of disabled people without the fully informed consent of the individual.

Success will be evaluated through Minister’s feedback on the advice received.

9 Evidence base

There is anecdotal report of instances of non-therapeutic sterilisation occurring in New Zealand, and at least one confirmed instance of a New Zealand child undergoing Ashley Treatment in a foreign jurisdiction. The lack of reporting on non-therapeutic sterilisation of people with disability is a concern in itself. Initial information on the New Zealand legislative and medico ethical framework shows it to fall short of UNCRPD requirements in protecting rights of disabled people.

10 Related work

DAP 7a) Ensure disabled people can exercise their legal capacity, including through recognition of supported decision making. Lead: Office for Disability Issues
DAP 9c) Increase access to health services and improve health outcomes for disabled people with a specific focus on people with learning/intellectual disabilities. Lead: Ministry of Health.
DAP 9d) Explore how the Mental health (Compulsory Assessment and Treatment) Act 1992 relates to the New Zealand bill of Rights Act 1990 and the CRPD. Lead: Ministry of Health with Ministry of Justice support.

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9. Priority: Increase government services’ responsiveness to disabled people

9 D: Explore how the Mental Health (Compulsory Assessment and Treatment) Act 1992 relates to the New Zealand Bill of Rights Act 1990 and the CRPD.

Progress update to September 2018

Status: Complete

Cabinet accepted report on 11 July 2017.

Action Milestones:

Phase 1: Legal analysis of NZBORA, CRPD and the Mental Health Act by 15 June 2016 [completed]

Informed the development of the Mental Health Act and Human Rights discussion document.

Phase 2: Identification of concerns/issues with the Reference Group by 15 July 2016 [completed]

Reference Group meeting held in August 2016. Informed the development of the Mental Health Act and Human Rights discussion document.

Phase 3a: Release of consultation document by 15 August 2016 [completed]

Discussion document released for targeted consultation (approved by Cabinet) on 21 December.

Phase 3b: Consultation with wider stakeholders completed by 30 September 2016 [completed - extended time taken]

Consultation on the discussion document formally closed on 24 February 2017.

Revised timeframes agreed by DPOs (May 2017) [completed]

There was a need to extend the consultation period to ensure as many stakeholders as possible could participate (as it overlapped with the summer holiday period).
More time was also needed to consider the complex issues raised by stakeholders in the consultation process.
Final report and advice/options are due to be completed in July/August 2017.

Phase 4: Analysis of feedback and formulation of advice/options by 30 November 2016 [completed]

Currently in this phase. Reference group meets on 11 May 2017 to consider findings and advise on options/priorities. Report with findings and recommendations to be developed for SOC.

Projection completion: Final report and advice/options by 1 February 2017 [completed]

Lead: Ministry of Health

Others: Reference Group made up of range of key stakeholder perspectives, including: tangata whaiora (including Maori, youth and Pacific); family/whanau; academic and clinical/sector. Also wider stakeholder consultation.

Scope of action

This action is part of a shared result area to promote access in the community, incorporated into Priority 9: Increase government services’ responsiveness to disabled people, following updating of the Disability Action Plan in 2015.

The inclusion of this action in the Disability Action Plan responds to concerns of the United Nation’s Committee on the Rights of Persons with Disabilities (“the Committee”) that the Mental Health Act has been criticised for its lack of human rights principles (Concluding observations on the initial report on New Zealand, October 2014).

1 Contributors/partners with lead – who is involved in this action?

Representatives of Balance Aotearoa will provide initial advice on the design and scope of this action. Balance Aotearoa is a charitable trust which promotes the wellbeing of those affected by mental ill-health through providing information, education, support, training, advocacy and research. It is one of the seven Disabled Persons Organisations that work with the government agencies on the ‘co-designed’ Disability Action Plan.

A Steering Group is recommended to provide leadership and governance for the action. The group will comprise of:

Director of Mental Health, Ministry of Health
Group Manager, Populations Policy, Ministry of Health
A Balance Aotearoa representative

A Reference Group is also recommended to assist the Ministry to gain a broad understanding of how the Mental Health Act interacts with NZBoRA and the CRPD. The Reference Group will be made up of a range of key stakeholder groups (Terms of Reference to be developed).

2 Implementation plan

What is the purpose of this action and how will it be implemented?

The Mental Health Act is part of a broader legislative framework for health in New Zealand, which includes the NZBoRA, the Human Rights Act and the Code of Health and Disability Services Consumers’ Rights. Also relevant are New Zealand’s obligations under international law, including the CRPD. This action seeks to develop a shared understanding, informed by mental health service users/tangata whaiora, of how the Mental Health Act relates to the CRPD, taking into account the broader legal context.

The project will take a phased approach.

I. Phase 1: A legal analysis of the compatibility of the Mental Health Act with the CRPD and NZBoRA.

II. Phase 2: A process of identifying issues or concerns about how the Mental Health Act is administered, with reference to the CRPD and NZBoRA, will take place with the Reference Group, informed by the legal analysis.

III. Phase 3: Development of a consultation paper based on phase 1. Consultation with wider stakeholders.

IV. Phase 4: Analysis of consultation feedback. Formulation of advice and options.

V. Final report and advice/options to the Ministerial Committee on Disability Issues.

3 What is included in the scope of this action?

A legal analysis of the Mental Health Act’s compatibility with the CRPD and NZBoRA.

A collaborative process of identifying any issues or concerns about administration of the Mental Health Act in relation to the CRPD and NZBoRA.

Consultation and engagement with stakeholders on the above, including meetings and a written consultation process.

The development of advice and options for addressing concerns or issues highlighted in the course of this action.

4 What is excluded from the scope of this action?

This action is not a review of the Mental Health Act. Changes to the Mental Health Act are outside the scope of this action.

This action will not include a review or exploration of the system of compulsory mental health assessment and treatment of people who have entered the mental health system through the courts or corrections systems (that is, the forensic mental health framework).

This action concludes when final advice and options have been provided.

5 What are the timeframes for implementation?

Phase 1: Legal analysis of NZBORA, CRPD and the Mental Health Act by 15 June 2016

Phase 2: Identification of concerns/issues with the Reference Group by 15 July 2016

Phase 3a: Release of consultation document by 15 August 2016

Phase 3b: Consultation with wider stakeholders completed by 30 September 2016

Phase 4: Analysis of feedback and formulation of advice/options by 30 November 2016

Projection completion: Final report and advice/options by 1 February 2017.

6 What resources will the lead and partners contribute?

The Ministry of Health will dedicate staff time to work on this action, including staff in the:

Office of the Director of Mental Health
Disability Policy, Policy Business Unit
Health Legal team.

7 What governance arrangements are in place for this project?

Oversight of this project will be provided by a steering group, comprising:

Director of Mental Health
Group Manager, Populations Policy
A representative of Balance Aotearoa.

8 Reporting – key milestones/deliverables

Reporting to DPO and CEs Group on scope and project approach in May 2016.

Regular updates to Office of Disability Issues as required.

9 Impact – what are we trying to achieve?

How will we know if the action has achieved the intended result/outcomes?

There is a shared understanding, informed by service users/tangata whaiora, of how the Mental Health Act interacts the New Zealand Bill of Rights Act and the Convention on the Rights of Persons with Disabilities.

How will these indicators be measured or evaluated?

A report will be produced, and jointly agreed between officials and DPOs that summarises the issues and views explored during the project. The report will include options for addressing areas where gaps or problems have been identified.

10 Evidence base

This project is primarily aimed at gaining a stakeholder-informed understanding of how the Mental Health Act relates to the CRPD and NZBoRA. This will be informed in part by feedback from stakeholder groups and individuals. The following information will also be relevant to the project:

Quantitative data on the use of the Mental Health Act in New Zealand
Advice from sector experts and consumers
Relevant current literature

11 Related work

This action relates to the following Disability Action Plan 2014-2018 actions:

DAP Action 4(a) Ensure disabled people can exercise their legal capacity, including through recognition of supported decision making.
DAP Action (4f) to “undertake a stocktake to identify any legislation that is not consistent with the Convention on the Rights of Persons with Disabilities and explore options to improve consistency (lead).”

The following work (outside of the Disability Action Plan) is relevant to this action:

The Ministry of Health development of new restrictive practices guidelines for mental health services
DHB indicator on the use of section 29 orders for Māori service users
Refresh of Rising to the Challenge: The Mental Health and Addictions Service Development Plan 2012-2017
Equally Well (sector-wide initiative to improve physical health outcomes for people experiencing mental health and/or addiction issues, led by Te Pou)
The refresh of the New Zealand Health Strategy
Substance Addiction (Compulsory Assessment and Treatment) Bill.

Information is also available at: http://www.health.govt.nz/our-work/mental-health-and-addictions/mental-health/mental-health-and-human-rights-assessment

Other initiatives

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Other projects and initiatives, aside from those identified in the Disability Action Plan, are being carried out to support the Choice and Control outcomes of the New Zealand Disability Strategy.

Transforming the disability support system

The Government has made decisions on the next steps for transforming New Zealand's disability support system. The transformation will be based on the Enabling Good Lives vision and principles, and informed by evidence of ‘what works’.

Find out more about the transformation of the disability support system

Enabling Good Lives

Enabling Good Lives is a partnership between government agencies and the disability sector aimed at long term transformation of how disabled people and families are supported to live everyday lives.

Find out more about Enabling Good lives

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Explore a clickable dashboard that demonstrates inequality and progress in choice and control towards disabled people.

Inequality and progress

7.1 Disabled people have and maintain control over decisions about their lives.

Unfortunately we have very limited data on this at a national scale. However, more and more surveys are now examining locus of control, such as Te Kupenga (2018).

Graph on choice and control - data in text below

This survey found less disabled people reporting to have a high sense of control over their life. This included both 15-54 year olds as well as those aged 55+. For example, only 64% of 15-54 year olds reported a high sense of control over their life compared to 82% of non-disabled people.

7.2 Disabled people and their whānau have choice and control over government funded services that address their needs.

Again, we have very limited data in this space. The Kiwis Count survey results (2021) does indicate that experience of trust in the public sector, does seem to have remained relatively steady at around 70-76% having relatively high trust, since 2016. This is only a proxy measure and does not provide a good picture of choice and control by government funded services.

7.3 Disabled people and their whānau have control over who provides services.

No suitable data available at this stage.

Page last updated: 28.02.2019

icon-arrows Outcome 7 - Choice and control

Our future and what needs to happen

What our future looks like

What this means:

Actions

Action - DPO work to support changes to disability support system

On this page

Progress update to September 2018

Action milestones:

Evidence gathering (March - July 2016) [complete]

Analysing what works and why (August - October 2016) [complete]

Identifying what changes could be made (November - December 2016) [complete]

Cabinet paper developed [complete]

Scope of action

1 Lead

2 Context

3 Proposed scope

Phase 1: Gathering the evidence

Phase 2: Analysing what works and why

Phase 3: Identifying what changes could be made

4 Contributors/partners with lead – who is involved in this action?

5 Reporting - key milestones/deliverables

Phase 1: Gathering the evidence

Phase 2: Identifying what works and why

Phase 3: Identifying the changes that could be made to the disability support system

6 Risks

7 Impact – what are we trying to achieve?

8 Evidence base

9 Related work

Action - A good start in life

On this page

Progress update to September 2018

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]

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

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

Literature review(May 2016) [complete]

Revised timeframes agreed with DPOs [on-track]

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

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

Action research (30 October 2017) [complete]

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

Scope of action

1 Lead

2 Scope

3 Project governance and structure

Lead agency

Project governance

Project Reference Group

Project team

Costs of DPO and NGO participation

4 Reporting – key milestones/deliverables

Proposed phase 1 deliverables and due date

5 Risks

Potential risk

Mitigation

6 Evidence base

7 Related work

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

Action - Develop ways for feedback on quality of services and support

On this page

Progress update to September 2018

Action Milestones:

Appointment of a Provider as a result of an open tender process [complete]

Progress reports will be provided on the work of the provider [complete]

Final report on Community Residential Service User Feedback [complete]

Scope of action

1 Lead

2 Contributors/partners with lead – who is involved in this action?

3 What is the purpose of this action and how will it be implemented?

4 What is included in the scope of this action?

5 What is excluded from the scope of this action?

6 What are the timeframes for implementation?

7 What resources will the lead and partners contribute?

8 What governance arrangements are in place for this project?

9 Reporting – key milestones/deliverables

10 Impact – what are we trying to achieve?

What are indicators of the action’s intended result/outcomes desired?

How will these indicators be measured or evaluated?

11 Evidence base

Outcome 7 - Choice and control