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