RFP for Implementation Support Services for a Demonstration Project for The

New Model for Supporting Disabled People

Summary of the work of the National Reference Group (NRG) - June 2011

The National Reference Group has been set up to provide strategic input into the New Model. It will look at information from the Western Bay of Plenty Demonstration Project, provide thoughts and ideas on the New Model and suggest changes to improve how it works.

Established in April, the Group met for three days, where they established their Terms of Reference and were briefed by the Ministry of Health on all aspects of the New Model.

Topics discussed:

The New Model – General issues

How to keep the New Model focused on strengths.
Risk is part of everyone’s life. How will the New Model address perceptions of risk and need for choice?
How will this affect the workforce skills base? How can services retain staff and build skills, especially those affected by IF? We will still need specialist groups.
How to refer to the New Model? What new words/names might emerge.
What is MOH’s contribution to tino rangatiratanga or a ‘good life’? The MOH can’t prescribe lives for people.

The Disabled Person’s Pathway

A one page draft flow chart has been developed to show how the parts of the New Model link in with current supports. Members found the DP Pathway helpful as it shows the LAC is not creating another layer, as it is not compulsory. This is a work in progress.

Assessment

Often disabled people and families are assessed more than is necessary. There are still issues around needs being assessed but outcomes not met.

Supported Self-Assessment is now being demonstrated in the Western Bay of Plenty by the NASC for people/families with a low/medium level of need. Aspects discussed were

People doing their own assessment may under-assess or over assess. However that is also possible when people are assessed by professionals.
How well does this enable disabled people and families to build on what is essential to them, capture their needs clearly, put in their own goals?
Can this be made available for people with high needs too?
This is still deficit based. Can we better capture strengths and needs?

Research

The baseline research for the Demonstration Project is nearly complete. Twenty four families and disabled people were asked what they think of their supports now and whether they help them have a good life. The sample included a wide age range, disabled people and families/whanau, people with different impairments, some living at home, some in supported living, Maori, Pakeha and Pasifika. After the New Model is in place, this research could help compare the levels of satisfaction before and after the Demonstration.

The Ministry is contracting developmental evaluators to work alongside the Demonstration Project to see how the objectives of the New Model are met, looking closely at whether disabled people gain more choice and control over supports and greater flexibility in support provided. Information will be analysed and recommendations made throughout. After the Demonstration Project ends, the evaluation will inform recommendations on roll out of the New Model.

Accountability

A broad range of issues is being considered for the new accountability framework. As decision making moves closer to disabled people, different processes are needed.

Members asked who defines outcomes and how they are measured? Processes need to be transparent and fair, with support and advice for people at the start. They should allow for mistakes and ensure people don’t feel framed. Results Based Accountability processes could be used to measure effects of government policy, as has been done for Maori. These principles are empowering rather than punitive.

In groups, members discussed scenarios based on areas where accountability issues arise: LAC roles in supporting planning and outcomes; making decisions around the use of individualised funding (disabled person living at home with family); handling a personal budget; ensuring taxes are paid (individualised funding).

Discussions covered

The role and extent of responsibility of Local Area Coordinators in supporting families in planning
Responsibility held by disabled people and families/whanau
Who needs to follow through when goals are set?
If someone succeeds who needs to know?
For an individual, ‘success’ may be a different outcome from the original goal
Individualised Funding is fraught as people become employers without necessarily having skills. There can be honest mistakes. New guidelines are being developed. The IF host needs to provide information and support accessible to holders of Individualised Funding.

The scenarios brought out the complexity of accountability issues.

Allocation and Self-Directed Purchasing

These changes are central to increasing choice and control. There are two key issues

How do we allocate funding to people?
What guidelines are needed around the use of the funding allocated?

Members studied the principles guiding Self-Directed Purchasing in Victoria, Australia. In groups, they applied the principles to scenarios, and considered whether they would give fair results.

Key issues discussed and questions raised were:

What is the additional cost of disability? This is a core issue.
What is the capacity of the system to respond to changing needs? Some people have fluctuating levels of disability.
How do we factor in cost of informal supports and social capital?
We must minimise bureaucracy at all costs.
People’s use of their allocations should be based on desired outcomes.
Can allocations be used to purchase supports that might be available from other agencies, if the other agencies options are not acceptable?
How can people who come under budget be recognised and thanked, rather than just be punished by being allocated less budget the following year?
We need to think long term and strategic rather than short term cost cutting
With Individualised Funding, if a disabled person/family have more natural support, they don’t get as much help. Is this fair? Yet if everyone gets the same, no matter what their natural supports, then isolated people with minimal support will miss out on some components of ‘a good life’. Is it fairer to provide extra support to people who are isolated and do not have natural supports?
Cultural implications may raise different choices: the roles of caring might differ

Local Area Coordination

The core ideas behind Local Area Coordination (LAC) were explained. The MOH is tasked with implementing this as it is in Australia. Then it will be evaluated and recommendations made.

LAC

is very local: in small towns or suburbs
is independent of services
is values driven
helps people think about and plan for “a good/everyday life”
helps people know about, and if wanted, navigate options for support
includes a community building component e.g.(from Australia) the LAC helped the community work on ensuring their swimming pool was accessible for 4 young disabled men who wanted to swim.

Coordinators and a coordinator/supervisor will soon be contracted for the Demonstration Project. NRG members gave advice and input on:

LAC principles: The Australian ones will be used in the Demonstration Project but we needed to add some on the Treaty and cultural issues.
Interview and selection processes for Coordinators.

Whanau Ora and the New Model

Due to time pressure, there was only a brief presentation on how the New Model fits with Whanau Ora (WO) and this will be followed up at the next meeting.
In the Western Bay, meetings have been held with the potential Whanau Ora provider who is keen to work collaboratively to meet the needs of Maori disabled people and their whanau.

Closing

In a closing round members expressed their growing understanding of the complexities of issues involved in the New Model work, pleasure at robust, stimulating, honest and really hard debates which were respectful and honouring of the roles of families. The high level of trust was noted and members thanked the Ministry staff for their frankness. Members are looking forward to discussing the ‘chunky bits’ at further meetings.

June 2011: Summary of National Reference Group work 1