Anne Hawker, Principal Disability Adviser at Ministry of Social Development spoke as part of a panel discussion at the ASSBI/NZRA Conference in May 2019. Anne was asked to reflect on the future of rehabilitation within New Zealand, with an emphasis on policy, practice and politics. A number of people have indicated that they were keen to access her notes ... so Anne has very kindly allowed us to publish them.
A couple of definitions:
The World Health Organisation (WHO) Rehabilitation Strategy defines rehabilitation as...
a set of interventions designed to optimise functioning and reduce disability in individuals with health conditions in interaction with their environment.
In Article 26, the United Nations Convention of the Rights of Persons with Disabilities (UNCRPD) definition of habilitation and rehabilitation states,
parties shall take effective and appropriate measures including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.
Why the difference?
One of the reasons is the significant role played by disabled people and their organisations within the development of the Convention. As article 4.3 of the UNCRPD says
In the development and implementation of legislation and policies to implement the present Convention, and in other decision- making processes concerning issues relating to persons with disabilities, States parties shall closely consult with and actively involve person with disabilities, including children with disabilities through their representative organisations.
For disabled people the aim is participation in the community in which they live.
The need to genuinely dialogue with disabled people
When the debate was first raised around functional capacity, disabled people pushed against the efforts to make functional gains where they were not adequately involved in the decision-making process. This is why the schema of the WHO International Classification Functioning, Disability and Health (ICF) is so important to me - it adds that important dimension of participation. It is why I celebrate the call from Dr Alarcos Cieza, who oversees WHO’s work on vision, hearing, rehabilitation and disability, states on page 25 of the WHO strategy,
rehabilitation, above all, is a person-centred strategy to address an individual needs which are beyond specific organisations, beyond specialisations and beyond specific groups. The spirit of collaboration that we hear in the statements from different stakeholders needs to be maintained in our Call for Action.
I was interested in the call for action that they talk about and health having the stewardship role in strengthening rehabilitation services.
Stewardship is now generally recognised as the acceptance or assignment of responsibility to shepherd and safeguard the valuables of others.
I believe that stewardship is an interesting term, specifically due to:
- A failure to deliver up to now
- A paternalistic stance being suggested by this term
- The term does not engender collaboration and partnership (as Treaty of Waitangi and Reform of the Public Service Act)
The need to ensure that rehabilitation is included in NZ health strategy & delivery
It was interesting the 'New Zealand Health Strategy 2016-2026 – Future Direction' does not mention rehabilitation and yet WHO has called for the
full spectrum of essential, quality health services from health promotion, prevention, treatment, rehabilitation and palliative care.
When I raised questions [about rehabilitation being missed from the NZ Health Strategy,] I’m looked at blankly. As Jan Monsbakken, Past President of Rehabilitation International, said,
very few people really know about rehabilitation and it is our obligation to make sure that everyone is aware of the importance.”
The UN's Sustainable Development Goals (SDG) emphasise the importance of ensuring the needs of disabled people are met.
Rehabilitation is crucial. It’s a life changer, and it needs to be beefed up all over the world… Habilitation and Rehabilitation is crucial if we really want to make sure that no one is left behind.
How do we know that no one will be left behind – what information do we capture? How do we measure success - is it when people are able to do their activities of daily living, or when they are able to participate in the community in activities of their choosing?
Suggestions for the future....
I agree with the statement 'efficient rehabilitation requires proper planning.' To do this we need health information systems to collect, process and manage relevant information. We need a broader and integrated information approach.
Change requires more than collaboration. It involves genuine dialogue with disabled people and their organisations. Habilitation and rehabilitation have lost respect in the disability sector, which I think is sad. Why? People still remember it being about “fixing people, making them normal.”
People need to be involved in the decisions that impact on their lives. This must include thinking about how services address:
- Choice and control
- Health literacy - getting the information that is needed, understanding the information and deciding if it is accurate and enough, and then acting on the information
- Ageing with a disability
As NZRA's only life-time member, we are grateful to Anne for these reflections and for the challenges that they present. We want to thank Anne for her ongoing commitment to ensuring that genuine dialogue occurs, and that disabled people are offered services that promote their ability to meaningfully and fully participate in the communities in which they live.