What do people with disability want?

By Samantha Jenkinson

Thanks Karen.

It’s my role today to draw some links between Carmel’s presentation and the situation in Australia. And to talk about what people with disability want in terms of accommodation services and support.

Before I start I would just like to clarify that my comments today will not be solely about accommodation support services for people with disability with ageing carers, or people with disability who are aged eighteen and want to move out of home. I will be talking about people with disability across a range of ages, impairments and life situations.

The Australian Federation of Disability Organisations has recently undertaken two consultations with people with disability, asking what they want and expect from services.

In 2006, we undertook a CSTDA consultation for FaCSIA. Accommodation and support services were raised in many responses to our survey. The report of the consultation has not been released, but the Executive Summary was made public and I will draw on that today.

In April this year, AFDO held a “Creative Solutions” public forum. The forum built on the CSTDA consultation and looked at innovative ways forward for disability and generic services.

The same messages emerged strongly from both consultations and are relevant to today’s discussion. I have grouped these under five headings:

1. recognise and value diversity
2. provide seamless and interconnected services
3. give people the information they need to make informed choices
4. address inclusion broadly and
5. make people with disability central to decision making about disability

A quote from the CSTDA Consultation Executive Report summarises the voices of people with disability well:

“The resounding conclusion to be drawn from the consultation was that people with disability want, and expect, the resources they need to participate as fully functioning members of their communities to be available and accessible, as and when they are needed. People with disability want to work with governments to deliver a support system that achieves this - a support system that values their contribution and encourages their independence”.

It is not surprising that the same messages were reflected in Carmel’s research. However, there are particular ways that they apply in the Australian context and it is this that I would like to cover now.

Arguably the strongest message to come from people with disability in our consultations was the urgent call for governments and the community to recognise and value diversity.

One of the things that struck me about Carmel’s research was the indignation with which her question about plans was received. “I don’t live my life by a plan!”

People with disability want to live, not survive. We want a home, not a house.

People's needs are diverse and individual. Their needs often cross the boundaries of service and provider types. And they change throughout a person's life.

No-one else is asked to accept what amounts to a curfew – be home by 6pm, because there’ll be no service available to help you after that.

People with disability want real choices in accommodation options, and choices within these options.

The desire of people with disability for more control over the support and services they receive was strongly expressed in both AFDO consultations.

Similar to Carmel’s findings, the degree of control people wanted over their funding varied. Some people wanted to receive funding directly which they could self-manage. Others wanted direct input into decisions, but did not want to manage funding directly.

But across all responses there was a strong desire to build the capacity of people to manage their own lives.

That means building the capacity of people with disability to control and direct their own support, speak for themselves and run services.

This means:
- people having the opportunity to have input
- people having the skills to manage their own funding if they desire and
- people with disability being employed to run the support services

Carmel’s presentation offers innovative suggestions in this regard, such as the Swedish cooperative model.

As an aside, it is interesting to note that in both the UK and Sweden there is supportive legislation. In the UK it is legislated that people must be offered the option of direct payments, and in Sweden it is legislated that people with disability have access to independent living.

The second message from people with disability was the need for seamless and interconnected services.

Unlike the UK and Sweden, Australia is a federation, with services provided at the local, state and federal level.

We need to be careful that the Federal Government’s move into accommodation does not further complicate a system that many already find impenetrable and intimidating.

People should not be penalised for changes in their life circumstances or needs. Or for not knowing exactly which office they should have phoned or dropped into, when they were seeking help.

Carmel’s presentation offers glimpses of how things could be done differently. Of models that promote 'whole of life' assessment.

At our Brisbane forum, there was a strong push for a new approach where people with disability can go to the one place to get all the assistance they need. A one-stop-shop that brings together the funding, services and supports they need to live their life. Assistance that connects them to the community not separates or segregates them.

People have called for simplicity. But let me be absolutely clear what I mean by this – whose comfort I am concerned about.

We need a system that is simple for people with disability to navigate. This does not mean a system that is simple for governments. In fact, an arrangement like the one-stop-shop I talked about is likely to require more complex ‘back-room’ dealings between levels of government and within governments. It is likely to require specialist services with their knowledge to provide advice, training and specialist assistance where needed to a one-stop-shop.

Let me give you an example. A number of state disability service systems link the provision of accommodation and support services. This may make servicing easy from the perspective of contractual arrangements. But it limits the choices of the person with disability. People should be able to negotiate separate rental agreements and support agreements. This may lead to increased complexity for government, but this will be counterbalanced by the benefits. Like increased responsiveness to individuals’ changing needs, increased competition, and increased safeguards for vulnerable people.

In our consultations a strong theme was the need to give people the information they need to make informed choices.

At several points, Carmel’s interview subjects emphasised the importance of access to information. This will resound for people involved in the Australian disability sector.

People need someone they can talk to – a single point of contact – because our service system is incredibly complex.

As I said before, people with disability want a system that can respond to them wherever they turn up – be it Centrelink, the local neighbourhood house or a hospital.

Another key message to come from our consultations is not to look at disability services in isolation.

One of the interesting points in Carmel’s presentation, which I’m sure was picked up by everyone here, was the cost efficiencies in providing home-based supports, instead of institutional care.

I would add to the equation the non-financial cost efficiencies of community based support. Like the potential to reduce social isolation and increase community acceptance and inclusion.

Think of the examples presented by Carmel of the sorts of supports that people prioritised when they had the chance: support to go to the pub, help with shopping for clothes.

As we all know, simply moving people from institutions into houses in the community is not enough to protect against isolation and exclusion. We cannot afford to create another series of community-based institutions.

An important guard against this is working with community based services to make sure they are accessible and inclusive. And I am not talking only about disability services. I mean the community resources that are available to everyone: the gym, the dance studio, the reading group at the local library.

We need a substantial increase in the accessibility of the community – the streets, transport infrastructure and information services. We also need more resources to go into broad community awareness education campaigns.

And to the greatest extent possible, we need services that are provided for people with disability to reflect cultural norms. For example, people with disability should have tenancy agreements and tenancy rights that are in line with the general community’s rights.

And finally, the message that really underlies all of what I have said already. People with disability want to be central to decision making about their lives. At the local level and at the systemic level.

At its core, this message is saying that service design and delivery should be focussed on the needs of people with disability, not be captive to the demands of the system.

Engaging people with people with disability in all areas of service design, delivery and management is not simply a question of respect for human rights. It also makes sound business sense.

Let me give you an example.

Carmel raised a number of challenges related to the disability workforce and service structure. Similar problems with people being able to access high quality support outside business hours are not new in Australia.

Ten years ago, people with disability living in northern Brisbane decided they had had enough of not being able to go out at night, and not being able to live spontaneously.

They got together to form their own service, Mobile Attendance Care Services, which provides services between 6pm and 6am. And you don’t need to have made an appointment weeks in advance.

People with disability should be involved in planning, because it is people with disability who know the solutions to their needs.

It is an interesting question to consider whether the Disability Service Standards are sufficient to ensure this level of engagement of people with disability.

Let me finish with another quote from the CSTDA consultation.

“Perhaps the most potent theme was that people with disability overwhelmingly wanted to be productive members of their communities, in whatever way they were capable.”

A goal which I’m sure we can all agree on.

Thank you.