My change in employment has me managing development projects in Africa. This has been a joy as I have worked with partners in various countries on projects that have improved food security for poor families, provided income generating opportunities for youth, humanitarian assistance for refugees and opportunity for people with disabilities. I want to highlight one disability project which stands in stark contrast to disability services in Australia.
Like most disability programs in Australia, the community based disability project in rural Tanzania is delivered by an NGO which seeks to serve a marginalised group of people in a culture where shame and superstition still dominate the population, resulting in people with disabilities (PWD) being hidden away by families or at risk of mutilation from witch doctors, who believe some PWD possess supernatural powers and amputation of limbs is prized for purposes of sorcery. However apart from the NGO status in both countries there the similarities end.
Tanzania understands disability within a human rights context.
The purpose of the UN Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.
Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.
In working with our partner in Tanzania, I have been impressed at the commitment the project has to the human rights of the people with whom they are working. Like NGOs commenced prior to government funding in Australia, this is a grass roots movement born from the desire to assist PWD assert their rights. Some of the things they do include advocating for children to be enrolled in school despite their disability, providing referrals to medical services for children born with conditions which may cause disability such as hydrocephalus, arranging for therapy and psychological clinics in rural areas and designing and developing assistive technology. In addition to these services micro enterprise loans are provided to assist PWD establish small businesses and disabled peoples' organisations are being established, currently 16 have been developed. The services provided are encouraging individuals and their families to work together to shape community opinion and attitudes, improve access to public services (which are non existent in some cases) and to seek equality for many Tanzanians living on the margins.
In Australia fifty years ago disability was similar to Tanzania today. It was parents and their supporters who established the schools, day programs and group homes and other services. Gradually as governments realised their responsibilities to PWD, schools were purchased, funding provided for operation of day programs and accommodation and other services and "charities" spawned by good intent became established with guaranteed sources of funding.
As the disability sector grew, tired and aged parents were able to relax to some extent, knowing their children would be supported and the question about what would become of their children when they died at least partially answered. However as the sector grew it lost its purpose as professionals replaced parents and with government encouraged them to establish business models to ensure viability and sustainability. Unspoken, but implied, these businesses were encouraged to "leverage community assets" or in plain language to go back a generation and do what the organisations did when run by parents and raise funds from the community to support services.
I am not suggesting that we go back to the situation in modern day Tanzania, where the project I work with is wholly reliant on aid from at least four donors. What is occurring there is that disability is being raised as a human rights issue and in fact our partners have a better understanding of human rights for PWD than most disability agencies have in Australia.
In a previous life I worked for the NSW government disability at a senior level, finishing my career in contract management, where I oversaw over 150 disability providers. I also worked for a provider for two years after leaving government. The transfer of power in these organisations has effectively disenfranchised parents, carers and PWD while agencies providing support have kept families at a distance and provided services within the letter rather than the spirit of funding agreements.
"Flexible" respite that was not flexible from a family perspective but quite prescribed and service driven is a case in point. Complaints never fully investigated and where the agency sought to defend itself rather than hearing carers' voices and plans which are not implemented are examples of how government funding has disenfranchised the community it was established to support.
The disability sector in Australia has lost sight of the people it exists to serve. Basic human rights of PWD demand that a sector established to support them, does more than provide a support worker. Unlike my friends in Tanzania, NGOs here in Australia need to be working at doing more than just providing a service. With a number of exceptions few large disability agencies do nothing more than provide a service with public funds. Parents and carers have been alienated and the community support base has been lost. Fundraising is anathema as agencies have grown fat and lazy on the public purse in a service driven culture.
What has this to do with the NDIS in Australia? Well the trial site in Newcastle appears to be setting off some lights for disability CEOs who are concerned that the rates for staff established by the government agency means they may not be able to deliver services! Imagine that - a disability service unable to deliver services because there is not enough money it it for them. Having worked in the sector it is not like they have not known what was coming. The NSW government and the National Disability Service, a peak body, has been working to assist the sector with the reforms long foreshadowed.
The NDIS is a shift in power. The NDIS is a rights based program which says to PWD that we as a society respect your humanity and want to ensure you are included in civil society and can contribute as valued citizens. Suddenly NGOs whose existence has been for reasons other than working in a rights based environment will no longer be guaranteed the public funding they have taken for granted. That funding will now be held by PWD and their supporters who will choose what support they need to be valued citizens.
So as the NDIS is rolled out should governments bow down to providers with large reserves on their balance sheets? Or should people with disabilities expect providers to deliver a customer focussed service, for which the customer (not government) pays?
