Australian Federation of Disability Organisations

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.