Preparing for a New Era

Since the 2008 “inquiry into the quality of care and service provision for people with disabilities”, things have been changing.  There have been initiatives to ‘try out’ approaches that result in disabled people and families having more choice and control.  These initiatives have been restricted to certain parts of the country, and have included things like:

  • Choice in Community Living
  • Enabling Good Lives (EGL) demonstrations in Christchurch and the Waikato
  • Local Area Co-ordination, and
  • Enhanced Individualised Funding.

In February 2017, Cabinet agreed to “an overall approach, based on the Enabling Good Lives (EGL) vision and principles, to transforming the cross-government disability support system… “. The period of piecemeal trials is concluding and the era of system transformation is beginning.

Currently, groups of disabled people, families, whānau, providers and officials are  working together on the key things that will happen in the first place where the full transformation will happen i.e.  the MidCentral Region.  It is too early to accurately predict what the final version may look like.

However, there are several things that are very likely to be core elements of the new system.  These things include people having:

  • a new way to work out funding that is strengths-based
  • a personal budget
  • a range of ways they can choose to manage their budgets
  • having access to an independent person (EGL Connector) who they can use to explore options and ideas with
  • easier access to crisis support
  • building stronger disabled persons and family networks, and
  • a regional and national leadership approach where disabled people and families have key roles.

These changes are intended to result in disabled people and families having more “say so” in creating good lives for themselves, easier systems and a much greater ability to build supports that work for them.  This requires change for everyone. It will take time to make sure these changes actually work better for people.

Disabled people and families will continue to be able to refine “the new system”.  These changes are intended to add new opportunities and not erode things that are currently working well for families. If families are happy with existing supports, then it is likely they can choose to continue with them, and also choose to have the service manage their budget.

For some, needing to wait will create frustration.  However, it is an opportunity for us all to begin to think differently, prepare, and for some of us to learn new skills.

The types of things that will enable individuals and families to make the best use of these new opportunities include:

  • having an idea of what a good life looks like for our family (our values, dreams and goals)
  • being clear in expressing what we want (many of us are better at expressing what we don’t want!)
  • knowing some basic ways to negotiate with others (supports/services)
  • becoming clear about how much we want to do ourselves and what we want others to do (there will be a range of options) and the ways we can monitor and positively influence things as they roll out.

There are already many examples of how more choice, and a flexible person-directed approach, works better for individuals and families.

The timeline for the change process is not finalised. However, it is likely to start, in the MidCentral Region, 1 July 2018.  It will take time for us to all become clear about what these changes really mean, and how we can best use new opportunities.

At this time, it is strongly suggested you take opportunities to access face-to-face events that will keep families up-to-date with progress, give chances for people to feed in their thoughts and offer a place for people to learn new skills (or refine existing skills).

There is also a website specifically designed to keep everyone aware of ‘system transformation’ progress at

You may also be interested in the system transformation up-dates on the EGL website.  This is updated regularly.


Mark Benjamin




NOTE: From 2018 all Care Matters workshops will have an EGL component (that explains the EGL principles and vision and includes updates on System Transformation and how families can be kept informed). The content will vary from workshop to workshop, depending on what information families want, which may range from a brief overview to a more in-depth discussion.

Call freephone 0508 236 236 to find out about upcoming workshops, or to request a workshop in your area (there needs to be 9 or more people and you or your family member need to qualify for disability support services).

International Day of Persons with Disabilities – December 3

Theme for 2015: Inclusion matters: access and empowerment for people of all abilities

The estimated one billion people living with disabilities worldwide face many barriers to inclusion in many key aspects of society. As a result, people with disabilities do not enjoy access to society on an equal basis with others, which includes areas of transportation, employment, and education as well as social and political participation.

The right to participate in public life is essential to create stable democracies, active citizenship and reduce inequalities in society.

By promoting empowerment, real opportunities for people are created. This enhances their own capacities and supports them in setting their own priorities. Empowerment involves investing in people – in jobs, health, nutrition, education, and social protection. When people are empowered they are better prepared to take advantage of opportunities, they become agents of change and can more readily embrace their civic responsibilities.

The sub-themes for the 2015 observance of the International Day are:

  • Making cities inclusive and accessible for all
  • Improving disability data and statistics
  • Including persons with invisible disabilities in society and development

More information about the International Day and the UN Enable programme is available at UN Enable.

The International Day of Persons with Disabilities is marked around the world annually on 3 December, as perGeneral Assembly resolution 47/3 of 14 October 1992, to promote awareness and mobilize support for critical issues pertaining to the inclusion of persons with disabilities in society and development.

New Zealand Carers’ Strategy Action Plan 2014 to 2018: Survey evaluating our progress

The lead agencies of the NZ Carers’ Strategy and the NZ Carers Alliance would like your feedback on the progress we are making towards the five objectives laid out in the New Zealand Carers’ Strategy Action Plan 2014 to 2018 and the difference it is making for whānau, aiga, and family carers.

Anyone who is a carer, related to a carer, or has an interest in carers’ needs is welcome to take part in this survey.

It should only take around 15 minutes to complete.

At the end of the survey, you will have an opportunity to go into a draw to win one of two $50 supermarket gift vouchers.


Caring for the carers

Two new national services to support family carers have been launched by the Ministry of Health for delivery by not-for-profits SAMS (Standards and Monitoring Services), Parent to Parent, and Carers New Zealand.

The services, developed by carers for carers, will assist people who support people with disabilities nationwide.

SAMS’ and Parent to Parent’s Care Matters learning and wellbeing service is available online at with support from a free phone service. The website, which goes live on November 6, pulls together clear, constructive, up-to-date information to assist carers, while the learning and training will be available face-to-face and online. The resources will cater to people who have visual impairments and be accessible via online desktop and mobile devices.

The Care Matters freephone 0508 236 236,  operated by Parent to Parent,  will connect callers to its existing network of local knowledge and support, and its facilitators keen to ensure face-to-face learning opportunities relevant to local interests and needs. Many are carers who have walked in the same shoes.

Care Matters will equip carers to not just obtain information/skills that assist today and make it easier to navigate the current system, but help carers use a more flexible approach to supports and services.  Resources and face-to-face learning opportunities provide carers with the opportunity to examine possibilities, consider alternatives, be strategic, and have a say.

The freephone will also direct carers to sources of respite care at Carers NZ’s new National Relief Care Matching Service. Often family carers struggle to find relief carers so they can have time out. This service matches disabled people and family carers with relief carers in their area, online and through its 0800 777 797 number. Carers NZ has partnered with MyCare Ltd to provide free access to a national pool of relief carer profiles, connecting people with disabilities and their families with people and services whose skills match their relief care needs.

Both services are now live and can be accessed at no cost via Needs Assessment and Service Coordination services (NASCs).


SAMS is as 35-year-old service well known in New Zealand, Australia, and North America for its pioneering work at the forefront of developing carer/family education and leadership. At grass roots level it has annual face-to-face contact with more than 700 carers in New Zealand. Information about SAMS is on

Parent to Parent

Parent to Parent is a 32-year-old organisation involved with the day-to-day support of family/whanau, while also understanding and influencing current and emerging policies that impact on carers. It has 600 volunteer parents/carers providing peer support nationwide, researchers providing information, and workshops for families of people with disabilities. Information about Parent to Parent is on

Carers NZ

Carers NZ is New Zealand’s peak body supporting family carers of all ages. It acts as the ongoing Secretariat for the NZ Carers Alliance of more than 45 national not-for-profits, including SAMS and Parent to Parent. Information about Carers NZ is on