Dr Laragy’s presentation

Flexible housing options:
International lessons for Australia

Canberra, 20 September 2007

Notes taken from a presentation given by Dr Carmel Laragy, La Trobe University

Introduction
Dr Laragy started by outlining the different understandings of “independent living” in the UK and Sweden.

In the UK, the term is used to refer to people receiving supports and services outside of the established disability sector, so that people can plan what activities they do throughout the day.

In Sweden, it is generally expected that people with disability will work or engage in work substitution activities (eg go to a day centre). In this context, independent living was seen as those activities undertaken outside of work hours, in a person’s spare time – evenings, weekends and holidays.

Background to study
Independent living programmes are increasing nationally and internationally and are known by a variety of names such as supported living, direct payments, individualised funding, consumer directed care, self-management and personal assistance.

Each programme is different but there are commonalities. Each promotes self-determination, choice, participation in community activities and the opportunity to live away from institutions.

Factors influencing independent living movement: disability advocacy groups want control and flexibility; society expects choice; governments are happy to restrict costs with demands on budgets from increasing numbers of people with a disability and the ageing of the population.

Methodology
Dr Laragy studied programmes in the UK in 2005 (23 interviews) and Sweden in 2006 (12 interviews). She interviewed government administrators, staff from disability service providers and researchers.
Dr Laragy did not have ethics approval to interview people with disability using supports, although a number of people she interviewed in support services, government and research positions were people with disability.

Features of the system – the UK
There is no consistency across England much less the UK.

There is national assessment of need, with people placed into one of 4 or 5 bands. However the amount of money and support services available vary considerably across local authorities. Two people assessed with the same level of need will receive different amounts in different areas.

Under direct payment schemes the person can become the legal employer and employ support workers, or can employ them through an agency, or a combination of both.

Centres that provide independent advice and information to people with disability play an important role.

A common theme in interviews was the inadequate level of funding.

Innovative practice in the UK
West Sussex Council is at the forefront of developing direct payments and gained European Union funding for innovative pilots. For example, it opened an Independent Living Association (Centre for Independent Living) and locates one council employee there.

The Council promotes the “In Control” project for people with intellectual disability.

Supporting people to stay home is seen as a win-win all-round.
The Council receives no extra money for providing direct payments, it has to be managed within the existing budget.

The Council argues that flexible supports that keep people living in their own homes are highly cost-effective. While a few individuals cost more than the average, the Council’s analysis shows that it saves money overall.

West Sussex Independent Living Association (ILA) opened in 1998 with European community money.

The ILA provides all necessary advice and support to manage direct payments.

Direct payments are only available to people living in their own home.
The ILA anticipates that the growth area of services will be preventing people from moving into residential services or helping people to move out.

It is compulsory for people wanting to use direct payments to consult with the ILA (this is not the same elsewhere).

Features of the system – Sweden
Sweden has national legislation entitling people to independent living.
Housing is provided to all citizens in Sweden as a right, regardless of disability.

Municipalities have a legal obligation to ensure the basic needs of its citizens are met.

It is expected that people with disability will, like the general population, live independently from their families.

A national government agency conducts the assessments of personal care needs and on the basis of this a number of hours is allocated to each person for personal care. This is then converted to a dollar value.

People with disability, their families and municipal and national government administrators all said that the resources provided to meet basic needs are adequate. This includes housing, support to live a social life and have a holiday.

Similar to the UK, municipalities vary in wealth and the level of support people receive varies, but the variance is not nearly as great as in the UK.

Innovative practice in Sweden
People can choose the level of control, flexibility and responsibility they want because a range of options exist:
• 60% people sign money over to the local municipality who provide rostered support workers.
• 12% people join a cooperative; they recruit and hire their own support workers with the help of the cooperative which also manages the accounts for a fee.
• 15% people employee support workers through private companies – some for profit and some not-for-profit.
• 3% people self manage and become legal employer.
Although money is allocated for personal support, there is a high level of flexibility and little surveillance.

If a person is ‘caught short’ they can apply to the municipality for extra funds.

Very common for people to save funds for their support worker so they can go together on a holiday.

Every cooperative is different, but commonly the cooperatives charge between 4-6% to manage the payroll of support workers and provide training to support workers and to the employers (people with a disability).

Lessons from the UK and Sweden
A national legislative framework is an important driver of change. For example in the UK the central government has set the uptake of direct payments by local authorities as a key performance indicator.

Direct payments schemes help people to stay living in their own homes and are credited with reducing costs because of the need for fewer residential services.

Flexible options with appropriate supports prevent people from moving into residential care, and in some instances support people to move out of residential care.

One of the biggest advantages of direct payments cited is that people can choose their own staff – either as the legal employer or by selecting staff through an agency.

Findings were consistent across different types of disabilities –people with an intellectual disability need additional supports, but the principles remain the same.

The start up period for direct payments is demanding, but it soon settles into a routine. Few people who start using direct payments decide to stop.

There may be a need for more help to be available to people for planning and assistance. For example, ILA staff can troubleshoot but cannot regularly help people to manage if they need high levels of assistance.

Economic efficiencies of flexible funding arrangements
All interviewees were adamant that direct payments are cost-effective. However, governments should not consider direct payments as a cheap option. It is essential to provide information and case management services.

There is still a need for community development and for specialist disability services.

Information
Information is critical and needs to be available on an “as needed” basis.

People need to know:
• How much money is available.
• What services and opportunities are available.
• The big picture policies, rules and regulations as well as on the ground local information about services and support opportunities.

Flexibility and choice
Not everybody wants to move away from established support programmes; some people want more flexibility but do not want the additional responsibilities individualised programmes often require.

Need flexibility - both the UK and Sweden had considerable flexibility for spending funds within agreed parameters.

Accountability
Need financial accountability that is thorough but not petty.
The UK requires people to keep detailed accounts; it is thought that this has lead to the uptake of direct payments being lower than expected.

In the UK the provision of ‘in-direct payments’ was being promoted where the money is managed by a third party – similar to the Swedish cooperatives.

Risk
There are risks associated with every service system design.
Some proponents of independent living programs in the UK and Sweden argued that risks are lessened when people are known in the local community compared to being isolated in institutions, as long as some degree of oversight is provided.

However, some strong proponents of independent living programs in the UK and Sweden agree that there are additional risks, but that these need to be managed because people do not want to be kept in cotton wool.
Ongoing contact with the family is important.

The risk of social isolation was raised, but this was countered by others who argued that far greater social contacts resulted from flexibility. The example was given of a person using their support to go to the pub. More research is needed regarding possible risks to particular client groups.

People with an intellectual disability
People with intellectual disability need special support systems such as the “In Control” program in the UK.

In Sweden a ‘good man (trustee)’ is appointed for every person with an intellectual disability who does not have the capacity to make their own decisions.

Support worker availability
Availability of support workers varied across cities in the UK and Sweden and was always cited as a critical issue.

Unemployment levels, pay rates, working conditions and historical attitudes towards unionised labour impacted on availability.

Part-time, casual work was widely reported to suit mothers with children with ads being placed on school notice boards and school newsletters.
Lack of permanency was reported as preventing people from making a career out of support work. The example was given of a person who could not get a bank loan, despite working in the same place for several years, because the work was not permanent.

Overall findings
The study consistently found that people with a disability and their families and carers, are looking for flexible and creative options.

Flexibility and consumer control offers opportunities for people to live the lives they want.

Direct control is an idea whose time has come.

Flexible options come with challenges and risks which need to be faced and managed. A complete risk adverse approach will stifle the life enhancing possibilities for many. More research is needed regarding possible risks to particular client groups.

Need clarity, transparency and equity.

Need clear accountability requirements and mechanisms.

Need a range of service possibilities to meet different needs.

Private agencies need to be carefully monitored because the profit motive can conflict with meeting peoples’ needs.

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.

Notes of the discussion

Flexible housing options:
International lessons for Australia
Question & Answer Session &
Wrap Up Themes

Canberra, 20 September 2007

Notes taken from the question and answer session following presentations by Dr Carmel Laragy, La Trobe University and Samantha Jenkinson, Australian Federation of Disability Organisations

Q: In your study did you see any interesting uses of technology?
A: Yes. In the UK there is a move to using home based monitoring systems, similar to those used in the ageing sector. The UK is investing a lot in this area.

Q: What happens with the workforce in Sweden in terms of planning?
A: I’m interested in this and I want to follow it up. In most programmes, people advertised for workers and those who applied may or may not be trained. There are different ways to fund training of support workers. Some training is provided free of charge by cooperatives, but the person is not paid for the time they spend at training in all cases. It is a bit hit and miss. Some people with disability do not want people who are trained already. In Sweden teams will induct new workers. In the majority of cases it seems to be creating a more casualised workforce, but there were also examples of workers employed on permanent contracts. Conditions vary. Recruiting staff can be hard. Flexible funding allows people to pay more to encourage workers. People advertise in local schools because the work is seen to suit mothers with school aged children. I heard of a worker who was employed on a contract. She had been employed for 4 years but she couldn’t get a bank loan because she was not permanently employed. Despite liking her job she was looking to leave. West Sussex Council is looking to set up a cooperative for support workers.

Q: There is a move to put people who can’t work anywhere else into TaFE and then into work in the support work industry, even though they are not suited to the job.
A: I have no evidence on this issue, but I have heard it said. It also relates to the rate of pay. You can’t get quality people to stay if you don’t pay them adequately.

Q: Can you see the Swedish or UK models being applied here?
A: Elements, yes. In Victoria there is a project where people can control the selection of their workers, though they don’t directly employ them. I am working with an NGO to evaluate a project where people have been given direct control of their funding. Even though it is only small amounts - $5,000 – the families love it. Prior to the project, they had to ring the case worker to ask for any changes, now they have the ability to plan how they choose to spend their budget over a 12 month period.

Q: Do you know how support work wages compare to average wages in the UK and Sweden?
A: I’m not sure, but they are on the low side. In Sweden, flexibility means that the pay rate per hour can be varied to attract staff when they are needed. We need to do more work in this area.

Q: Flexibility is a positive value but I wonder if by opening up money, we lose flexibility elsewhere? Sharing allows for cross- subsidisation to deal with unexpected or large costs. Is there a price to pay? What happens in the case of intense need at the end of a funding period?
A: The flexibility of pooling can be pursued in the model. One cooperative in Sweden pooled resources, but that was the exception. You need to provide back-up funding, in case of emergencies. In Sweden you can apply to the municipality for more funding if there are unforeseen demands or emergencies. In the UK practices seem to vary in different areas. In West Sussex I was told that they pay the occasional high cost to keep somebody living in their own home because on average direct payments is still cheaper than providing residential care. In some schemes, although you are assessed for your needs over a one year period, you only get paid one month in advance and this is topped up when receipts are provided – this ensures that no person can spend a year’s allocation and be left without money for supports.
C: We need to question if things are actually being costed properly if we need a system that supports this sort of cost-shifting. For example, do unit costings reflect the real cost of the activity and the skill level required of the workers involved? We need to do more work to develop better costings.

Q: People are robbed and abused by support workers. Did you see any safety mechanism in the UK or Sweden?
A: This seemed to be addressed in Sweden, where a vulnerable person has two people to watch over them. 1) Someone appointed to supervise the person with disability’s support needs, often the person’s mother, who is paid for this work. The supervisor is someone who is close to the person and who has regular contact with them. 2) People without capacity to make decisions can have a person appointed to act as their trustee. The two roles are separate but can be filled by the same person. It provides a better measure of safety because it increases the involvement of the person’s family.

C: This is another area requiring more work.

Q: You mentioned that in both countries people living in rich areas get more. Are people competing against each other? In Victoria, funding is very limited and doesn’t cover aids and equipment. Was it covered in the UK and Sweden?
A: In West Sussex they are working to get to the point where they have a single budget for each person. But I don’t know if this includes aids and equipment.

Q: You mentioned the services available to people with high support needs. Can you talk more about this? What happens if the support they need cannot be provided in the community?
A: In Sweden, people with very high support needs are living in their own flat or in group homes. Examples were discussed where all the support the person needed was bought in. There is a separation of housing and accommodation support.

Q: You talk about moving people out of institutions and needing to get them involved in the community. But if there is a lack of accessibility to other houses in the street, how are they better off? We need accessibility and adaptability and visitability.
A: Sweden has put a lot of effort into making things more accessible. I think it’s good. England seems to be struggling more. Cooperatives in Sweden said that the biggest challenge was community acceptance for people with an intellectual disability.

C: In the UK, visitability standards for all new houses have been legislated.

C: I run a service that offers housing support to people with HIV/AIDS. We are struggling with longer life expectancy and asking ourselves what we can provide. At what point do you stop supporting people in their homes? And people need the equivalent of aged care services much sooner.

Q: What is the availability of good quality, affordable housing?
A: Sweden is committed to it. In England it is much harder, with less housing available. I met people who used compensation payments to buy their own home and they were provided with 24 hour support.

Q: It seems packages can work well across the population because it is based on need. We divide people into ‘disability’ and ‘ageing’ because of funding, but does it matter?
A: In the UK they are trying to set up all inclusive services and systems and break down the barriers between disability and ageing.

Wrap Up Themes
Overarching themes of the forum were:

• Control
people with disability need access to information and funding to support the life that they want

• Flexibility

• Choices
access to the community, not just disability services
need accessible and visitable housing

• It’s not about housing
the issue is not housing or accommodation, it is about access to the community and living life they way we want

• Involve people with disability in services
people with disability want to be involved in the employment and training of staff and in determining their working conditions

• Safety and risk
everything has risks, our challenge is to manage them

• Transparency
in information and service provision and decision making

• Supportive legislation is essential

Disability Assistance Package

On 28 June 2007, the Prime Minister, the Hon John Howard MP, announced the Disability Assistance Package. The package provides $1.8 billion funding over five years for a range of initiatives.

More information about the package, a series of Disability Assistance Package factsheets are available on the Department of Families, Community Services and Indigenous Affairs website (http://www.facsia.gov.au/internet/facsinternet.nsf/disabilities/assistance_package.htm).

A key component of the Disability Assistance Package is the introduction of Commonwealth supported accommodation places.

Supported Accommodation Options Consultations

The Commonwealth Government is conducting consultations about how best to provide supported accommodation. The consultations commenced on 10 September 2007. To support the consultations, a discussion paper was released and can be found at http://www.facsia.gov.au/internet/facsinternet.nsf/disabilities/supported_accommodation.htm.

Consultations will be held during September and October 2007 in all capital cities and some regional centres.

Written submissions are due by Friday 26 October.

To register your interest or to request a copy of the discussion paper, you can call 1800 045 394 or email disabilityaccommodation@nationalmailing.com.au.