Any reforms to funding and support models need to be fully consultative if they are to be truly empowering.
The Ministry of Education recently made it tougher for students with learning disabilities to continue their studies and attain the qualifications they need to participate in society.
This has placed an additional barrier in front of the lives of young people who already face significant challenges getting qualifications and a career. And it is a good example of a government agency's failure to understand how much impact one bureaucratic decision can have.
For these pupils with "invisible disabilities" such as dyslexia and autism, having restricted access to the reading and writing support they need to cope with exams may stop them continuing their studies, getting work and potentially channel them in to life on a benefit.
It's a backward step and heightens my concerns around the lack of understanding driving the Government's "New Model" for supporting disabled people, currently under various stages of development, consultation and "trialling".
Put simply, the New Model is a shift to a more flexible and individualised funding model to support people with disabilities and open up more inclusive opportunities. It's the most significant policy change we've seen since Special Education 2000 with its promised land of more individual support and more inclusive schools.
CCS Disability Action strongly supports and embraces the concept, but we're concerned it will go the same way as Special Education 2000, a great piece of policy development that has morphed into a resource allocation process and lost its original principles and commitments. We're still waiting for schools to be more welcoming to disabled children.
My fear is that the New Model will be history repeating itself, a "tack-on" to the current stressed and dysfunctional system. We're hearing principled statements from ministers and officials about empowerment, choice and disabled people "being in control of their lives" and who could disagree?
But for providers such as CCS Disability Action, there are too many unknowns. What is the timeframe and what are the pathways to achieving these non-negotiable goals for disabled people? And what will be the role and structure of what we currently refer to as "provider-land"?
If there is going to be significant change in the sector, providers need time and funding to respond appropriately. CCS Disability Action works on a very tight budget trying to maximise our spending on supporting disabled people to have great lives. We need adequate lead-in time to plan and implement change management, training and development programmes.
Indeed, for too long the disability sector has lacked significant investment, relying on goodwill and community support to maintain quality services and develop new and creative ones. This is driven by our funders' inability to find a pricing and costing model that is realistic, affordable and sends the right signals to the sector about what are the important elements of effective quality services.
The Government's failure to come to grips with these challenges is compounded by the potential of individualised funding to draw funding from providers through service contracts to more indirect funding through a multitude of arrangements with individuals (or their representatives) who hold their own funds.
So, while fully supporting the concept of disabled people being in control of their lives, I'm incredibly anxious about the impact on the quality and nature of services disabled people will be able to purchase and how the "market" will adjust to the provision of these services.
Will individualised funding do anything to either raise or even maintain current standards of services? Will it completely change the nature of the relationship between consumer and provider and if so what are the pros and cons of this?
An inherent risk in the sector is the potential for increased casualisation of staff to a more contestable environment. Providers currently work hard to give staff certainty of employment based on known volumes and significant contracts. Changes will mean more staff need to be employed as temporaries or casuals to prevent staffing costs being hardwired into the financial structure of an organisation. More fluidity in levels of demand could lead to either having staffing capacity under-utilised or providers experiencing high exit costs.
This is clearly where the principles and direction of the New Model come up against provider realities. And I ask; can we achieve the outcomes for disabled people that everyone supports and at the same time not totally dismantle the current effective provider support structure? Or are the two processes just incompatible?
Perhaps it would have been wiser to start the "New Model" with a blank sheet of paper, working together with disabled people, agencies, community groups and government to develop a whole new approach.
Our sector suffers from a "silo mentality" of its three key funders; the Ministries of Health, Social Development and Education. While aspects of the New Model propose to address some of these issues between health and social development, education appears to be at times missing in action.
Are our leaders (political and ministry-based) brave enough to propose a structural change replacing these silos with a one-body, funding type agency with disabled people involved in its governance - or at the very least a task force led by disabled people and others to oversee its implementation?
Would this not put disabled people more truly in control of their own lives and destinies than through just an individualised funding scheme?
New models of support alone will not make New Zealand more inclusive. They change the way we do things and introduce new bureaucracy and funding channels which are one mechanism for giving people more control over their lives. But more control alone does not translate into removing barriers to participation or changing attitudes to create a more inclusive New Zealand.
We need to move from bureaucratic "talk, test and trial" to an environment of "consult, connect and collaborate", where providers and disabled people are truly involved in and consulted with about the future shape of the sector.
So who will be the winners from the New Model? All disabled people or specific interest groups? How will we connect with marginalised groups to ensure we shift the balance from those who currently speak on their behalf to hearing the true voice of disabled people?
The only acceptable place in this "brave new world" is where all disabled people have the same rights as we all do: to choose where they are educated, where and how they live, to have a meaningful job, to participate in the community and where health, safety and risk issues are seen as challenges, not reasons for restricting choice and becoming barriers to a good life.
Everything else is simply second best.
David Matthews is chief executive of CCS Disability Action.