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Models of Supported Accommodation for People with a Disability

The Disability Council of NSW

The Disability Council of NSW was established under the Community Welfare Act 1987, to advise the NSW Government on issues affecting people with a disability and their families. The Disability Council is also the NSW Disability Advisory Body to the Commonwealth Government.

Councillors are appointed by the Governor and are selected on the basis of their experience of disability and their understanding of issues, knowledge of service delivery and government policy. The majority of Councillors are people with disability.

In response to the request from the Director General to comment on the discussion paper Models of Supported Accommodation for People with a Disability, the Disability Council makes the following submission.

Introduction

The Disability Council strongly supports the NSW Government's commitment to close large residential centres for people with disability. The Disability Council agrees with the opinion of the 1997 Performance Audit Report that, even if such centres could meet the requirements of basic safety and human rights, they could not address the individual needs of people with a disability or provide the quality of life envisaged by the Disability Services Act 1993.[1]

Notwithstanding the Government's commitment we note, however, that a substantial number of people with disability remain segregated from their communities, living still in large residential centres. Consequently, the Disability Council will limit our comments, at this stage, to consideration of issues immediately relevant to the accommodation support needs of this group of people. We are confident, however, that many of the principles associated with terms such as person-centred planning and service delivery based upon the needs of individuals apply no less to the accommodation support requirements of people with disability currently living 'in the community'.

The discussion paper argues that the group of people still resident in large centres have specialised support needs: specifically, medical and/or behavioural needs. We understand the point that is made in the paper but we urge all stakeholders to approach such questions from a different perspective.

All people, whether with disability or not, need accommodation. Many people, whether with a disability or not, also depend on some form of support arrangements in a varied set of accommodation settings. The Building Manager of a medium density strata title block of units, for example, provides support to residents accommodated in the building. Government, non-government-not-for-profit and private sector agencies provide cleaning, domestic assistance and personal support services, including specialist medical intervention, to an increasing range of residents in what might be thought of as 'mainstream' accommodation. Some of those people have disability while many do not yet they currently live in all types of accommodation settings.

In short, we can think of almost no person who does not receive or benefit from some kind of supportive intervention to live in their current accommodation. This is, as we understand it, the generally accepted norm. Living in a residential setting (large or small) deviates from the norm.

If we accept that all people share the basic human need to be accommodated (we hope with respect for their autonomy, individuality and dignity as human beings) we must recognise also that some people require specific types of intervention and support that other people do not currently need. We recognise too that people's circumstances change over time. The supportive intervention any individual needs today can increase and decrease as well as change over time. It is our recommendation that service systems be re-shaped to fit with this reality: the "messy" business of "ordinary" lives lived by people with disability as much as by people who currently have no disability.

We draw particular attention to the need to shift thinking with regard to people who have "severe challenging behaviours, who may put themselves or others at risk of harm".[2] The Disability Council acknowledges that such behaviour is often acquired as a consequence of prolonged confinement in an institution, rather than something inherent to an individual's disability. For some people, the responses labelled as "challenging behaviour" may be the only effective form of communication available to them. There is a strong body of research evidence, established over decades, which properly locates service-system labels such as "challenging behaviour" within a clear context of need for service system reforms that encourage and support individual service users to change and develop.

We believe it is also important to note that the provision of appropriate accommodation for people with disability, and the provision of appropriate support while in that accommodation, are not synonymous.[3] Both of these separate but sometimes closely aligned service reform and development questions must be considered in any deinstitutionalisation process.

In this regard we note, as an example, The Victorian Office of the Public Advocate's Accommodation Models Discussion Paper[4] which concludes that the ways in which services are resourced and managed, as well as the quality of staff, affect the quality of life experienced by the residents more than the layout of the accommodation. A key challenge in NSW will be to get both the "bricks and mortar" and the human services right for the individuals concerned even as we recognise the differences between the accommodation requirements on the one hand and the support needs on the other.

The Disability Council does not support the creation of smaller-scale congregate care centres, particularly where such services are developed on the site of existing large residential centres. It is our belief that such "accommodation options" imply that the residents of such centres need to be, prefer to be or benefit from being kept separate from the rest of the community. Such a view reinforces, in our opinion, negative stereotypes of disability to the detriment of all.

Further, we argue on the basis of our direct experience that, where such segregated accommodation services are developed, the administrative needs of the service ultimately take priority over the needs of individual residents. While we recognise the sterling work of the overwhelming majority of professional staff in residential settings, we note, nevertheless that for people with disability living in such settings the most common sources of abuse come from support staff and other residents.[5] There is, as a consequence, a greater degree of highly specialised risk to people with disability in congregate settings than the "normal" risks of everyday life in mainstream communities.

In 1994, the Disability Council published its recommendations on accommodation and support options for people with disability,[6] which included an upper limit of no more than four people with disability residing together. Our position has not changed. Indeed, we believe that the demonstrable evidence of the lives of people with disability already living autonomously with support in NSW, other jurisdictions in Australia and overseas in comparable (OECD) countries shows the best (in terms of quality) and most effective (in terms of costs and benefits) arrangements to be those based upon person-centred responses to the needs of individuals living as their peers live, in circumstances that respect the cultural diversity and social norms of modern and inclusive communities.

The present discussion paper in the context of previous consultations with Disability Council.

The Disability Council notes that the current discussion paper raises questions similar to those in a discussion paper produced by the Disability Services Directorate of the NSW Department of Community Services in 1994, The Valued Norm: Housing for People with Disabilities. That paper was based, in part, on information collated from targeted consultations which the Disability Council helped facilitate.

Briefly, the 1994 paper provided practical examples of what contemporary approaches to supported accommodation might look like and how they could be financed. It introduced four essential criteria (termed "the valued norm") to help consumers and service providers evaluate various approaches. These were[7]:

1. Does this approach (or setting) reflect the everyday expectations of people of a similar age or stage of life?
   
   
2. Does this approach (or setting) enable the consumer to feel comfortable about being themselves and behaving in a way consistent with their cultural background?
   
   
3. Is this approach (or setting) appropriate to both women and men? Can they become involved in the same range of activities?
   
   
4. Does this approach (or setting) ensure that people with disability lives beside people without disabilities?

The 2005 discussion paper asks, "how best can we support people with a range of disabilities to live within their communities in ways that, as far as possible, offer choices that reflect the lifestyle of other people in the community?"

We believe that this question incorporates the four criteria that comprise the "valued norm" of the 1994 paper. The older document is more explicit and still highly relevant.

The models of supported accommodation described in The Valued Norm were represented in terms of a continuum, ranging from congregate-care facilities, with whole-of-life support, to private residences with occasional drop-in support. However, it was never suggested that a person would be required to "progress" from one environment to another. The "continuum" in 1994 simply implied a range of accommodation types. The paper considered ten accommodation options "defined by market usage" and believed to be adaptable and acceptable accommodation for people with disability. Both the positive and negative aspects of each type of accommodation were presented.

We summarise them below:

 1. Terrace Houses/Town Houses (2-3 bedroom) - attached dwellings, usually 2 storey, separated by a vertical wall.

• outside spaces often small and divided between front and back - may not be appropriate for people requiring access to open areas;
• issues of integration and access require careful consideration as these residences are often constructed in rows in busy locations.

2. Villa Units (1-3 bedroom) - attached dwellings, one storey, separated by a vertical wall.

• positive for mixture of ownership and rental;
• external areas don't always connect.

3. Multiplex (1-3 bedrooms) - a group of more than two dwellings, with ground access to all.

• noise transfer issues need to be carefully considered;
• outside space may be limited.

4. Dual Occupancy e.g. "granny flat" - a second dwelling on a piece of land.

• offers privacy and crisis support if necessary.

5. Freestanding Housing (2-6 bedroom).

• Once considered the ideal model - now seen as just one of many options.

6. Duplex (1-3 bedrooms) - two units divided by a horizontal separation.

• often larger than villas and home units.

7. Duplex/Semi-Detached (2-3 bedrooms) - two units divided by a vertical wall.

• often larger than villas with increased privacy and space around the house;
• could be appropriate for person with challenging behaviours with support next door.

8. Home Units (1-3 bedrooms).

• outside spaces may be limited;
• physical access to upper storey a key issue: installation of an elevator may improve capital gain opportunities though may also be cost prohibitive.

9. Integrated (1-4 bedroom per dwelling) - five or more dwellings developed as a house/land package.

• economies of scale: capital acquisition cost benefits;
• overcomes problems of privacy through physical separation of housing;
• opportunity to more efficiently provide support;
• access to peer support and networks;
• one-bedroom house possibly more appropriate for people with challenging behaviours to increase privacy for all residents;
• integration of people with and without disabilities is essential with this model;
• could have negative implications associated with an image of congregate care including the potential for institutional behaviour of staff.

10. Large freestanding residence (10-12 bedrooms).

• less restrictive option for a specific group of people who have profound and multiple disabilities and are dependent on ongoing and intensive medical support and personal care;
• only acceptable as a respite facility or as an alternative to residence in a nursing home or hospital for the above group;
• maximum average number of residents with separate bedrooms: 10 - dormitory accommodation is not acceptable;
• provides potential for overnight/weekend stays for families;
• issues to lessen institutional image and practice need to be considered;
• potential for staff to get to know people better.

The Valued Norm proposed a three-year plan to "develop more flexible and appropriate support and supported accommodation options" and a "framework for future service development by both the government and non-government sectors".

In response to this document, the Disability Council published two companion papers, Accommodation and Support Options for People with a Disability (referred to above) and Accommodating People with a Disability, in June 1994.

These publications presented direct consumer as well as parent / carer views on appropriate accommodation and support options - which, in effect, reinforced both the "essential criteria" of the 1994 discussion paper and the concept of a broad range of accommodation options. Additionally, both Disability Council papers echoed the original CSDA's observation that supported accommodation models should be as flexible as the range of living options available to the general community).

The 2005 discussion paper seeks input from "the full range of stakeholders". The Disability Council endorses that objective.

Furthermore, we believe that the views of the government and peak nongovernment participants in the workshops associated with The Valued Norm, together with the views of people with disability as well as carers and parents presented in Accommodating People with a Disability and Accommodation and Support Options for People with a Disability contribute significant input from the full range of stakeholders. We strongly believe that input remains valid today, more than ten years later.

The 2005 discussion paper describes ten possible models of supported accommodation for different population groups, and asks which of them may be suitable for people with disability. In particular, respondents are asked to consider the circumstances of people with complex health care needs and "severe challenging behaviour".

All of the possible models offered may be defined according to one of several of the models described in the 1994 discussion paper. The Disability Council is concerned that more than half of the possible models described in the current paper could be considered to be variations on a theme of small congregate care services or "villages": specifically those of the type associated with St Martin's Court, Kew Residential Services, Matavi Ageing in Place Initiative, Guthrie House, Abbeyfield Housing and Wintringham.

Such accommodation models may lead to improvements in quality of life (in comparison with large residential institutions). We are concerned, however, that models of 'congregate care' tend to limit social networks to other people with disability and to support staff within the same service. With this in mind, some of the cautions originally suggested for the "integrated" and "large freestanding residence" options in The Valued Norm should be applied, in our view, to the assessment of possible models set out in the 2005 discussion paper:

• there could be negative implications associated with congregate care - including the potential for institutional behaviour from support staff; and
• integration of people with and without disability is essential within such models in order for them to be acceptable as a modern response to meeting the diversity of need amongst people with disability.

Finally, a key problem inherent to the approach of the 2005 discussion paper is that the possible models of accommodation have been put forward with a view to seeking the 'best fit' of people with disability (who live in large residential centres and who have complex medical and/or behavioural needs). We believe this is the wrong way round: services should fit people rather than squeezing people into shape to fit services.

The starting point for developing models of support and accommodation ought to be and analysis of the needs of individuals with disability who have support and intervention requirements.

The 1994 discussion paper observed that there could be no approach based on 'one size fits all' (or even its many). Instead, the 1994 paper emphasised the application of Disability Services Standards - especially Individual Needs - in developing models of supported accommodation. It is the Disability Council's view that the current discussion paper shows insufficiently how the possible models offered for consideration could have be based on the perceived or expressed needs of representative groups of people or individuals living in large residential centres. Nor, we must say, can we see how all of the proposed models sit comfortably or could be consistent with the Disability Services Act.

Strengths & weaknesses of the models offered for discussion

1. Group Homes

Possible advantages:

• "Manageable" number of people (note however that Disability Council's preferred maximum number is 4)
• Paid support staff
• Access to day programs for residents
• Provision of overnight support

Possible disadvantages:

• Congregate and segregate people with an intellectual disability
• Incompatibility - people live for many years with 3 (or more) people with whom they may have nothing in common, despite preliminary functional/behavioural "compatibility" assessments
• Sharing of resources can be difficult
• Limitations on expression of individuality - services typically operate on a structured basis, such that residents shop, eat and even recreate together
• Needs of the group take priority over the needs of the individual
• Fixed routines could lead to unhappiness in their living environments and perpetuate behaviour problems

The Disability Council acknowledges that several of the models are designed for older people, who have limited resources and are making a conscious decision to balance their independence with the company and security of living with their peers. These are not people who have spent most of their lives in institutions, or people who have no experience of alternatives. The Disability Council believes that the possible disadvantages of small group home accommodation will apply to all proposed models where people with disability live in congregate settings.

2. Community Living Model (St Martin's Court type)

Possible advantages:

• Community living model preferred to nursing home care
• Refurbished to meet the needs of residents
• Individual courtyard gardens with communal gardens - mix of private and shared space
• Onsite live-in manager and organised coordinated care
• Tenants individually lease their units - rent assistance available

Possible disadvantages:

There is no mention of

• Ratio of disability to non-disability
• Access to amenities
• Maintenance of social networks
• Noise transfer issues

3. CAPII

Possible advantages:

• Free-standing dwellings, units and villas
• subsidised accommodation
• living-skills training
• mix of government and private ownership
• assistance is based on an individual support plan

Possible disadvantages:

• Crisis accommodation system
• Transitional support (may also be considered as an benefit)
• May not meet the person's needs in terms of location, size or accessibility

4. Kew Cottages type

Possible advantages:

• men with similar support needs co-located
• Individual program plans were developed
• Teaching skills and increasing community integration
• Staffing practices and models ensure adequate staffing levels, and consistency
• Effective internal and external communication systems, including house meetings & quarterly newsletters
• Full time attendance at community-based day programs for all the residents
• Family contact -family members expected to be involved in the development of individual program plans
• Behaviour intervention strategy team provided staff support
• 24 hour care and supervision, including access to medical and dental services and day activities
• 3 -5 people in purpose built houses

Possible disadvantages:

• Too large
• Segregated
• Ownership by the government
• Congregate care

5. Floating Care

Possible advantages:

• Case manager co-ordinates a tailored package of care and support
• private rental accommodation that suits the individual

Possible disadvantages:

• Presumes a high level of functional independence, which is shown by demonstrable evidence of real people living in the community not to be essential.

6. Matavi type

Possible advantages:

• Apparently suits frail older people with complex needs
• Conversion of one floor for all residents, to reduce social isolation - each resident has his or her own self-contained unit
• Clients are tenants
• Cost effective delivery of support services
• Communal space - dining room, sitting room, kitchen and laundry
• Elevator access
• Pooling of support hours to increase hours of care
• Access to emergency response call system
• Regularly reviewed, individual assessment and care management plan
• Personal care, home help, laundry, shopping, transport, social and emotional support and help with personal affairs

Possible disadvantages:

• Congregate care
• Focus is on accommodation rather than individual needs

7. Guthrie House type

Possible advantages:

• Contractual arrangement
• Residential accommodation for women with children
• 24 hour support and supervision
• A "transitional" service, with access to social work, case management, individual counselling, living skills training, information and education sessions, recreational outings, and assistance with appropriate post discharge accommodation

Possible disadvantages:

• Short term - what follow-up is available, apart from arranging "post discharge accommodation"?
• Communal kitchen and recreational facilities

8. Co-operatives

Possible advantages:

• Tenant managed
• Fully accessible, purpose-built villas
• Mix of 1 and 2 bedrooms
• Tenants have input into the design
• A range of services is provided according to the needs of the tenant, and organised independently
• Properties are funded by the NSW Department of Housing, which leases the properties to the cooperative
• Major capital works are paid for by the Department of Housing
• Tenant cooperatives receive training and support

Possible disadvantages:

· Relies on ability of individuals to source and manage care

9. Abbeyfield type

Possible advantages:

• Supportive group accommodation
• 10 people and a housekeeper - provides companionship and security in a small group
• Private bed-sitting room with ensuite
• Residents have their own keys, and there is no entry without the resident's permission
• The live-in housekeeper is available at night
• The housekeeper prepares the 2 main meals & served them in a communal dining room
• Residents take responsibility for their own breakfasts, cleaning and laundry
• HACC services are available
• Community shopping
• Purpose built
• 1 or 2 houses are joined & set in their own gardens
• established and operated by community based non-profit volunteer groups - responsible for the day to day operation of the house and the well being of residents and staff
• residents participate in management and decision making

Possible disadvantages:

• Shared facilities - living areas, the kitchen, garden, laundry and guest room
• Congregate setting in what could be termed a 'mini-institution'.

10. Wintringham type

Possible advantages:

• Outreach support
• Self-care units where residents are assisted to access health and other support services; higher level care available
• 24 one-bedroom apartments, spread over 3 stories

Possible disadvantages:

• Congregate setting in what could be termed a 'medium-sized institution'

Other accommodation models suggested by Councillors

The following brief descriptions apply to accommodation models that are worthy of consideration by the Department. Two are currently operating in NSW.

Each model is characterised by a clear focus on individual needs, and provision of appropriate supportsis critical to its success. The services are described in detail (including contact information) in the Coalition Against Segregated Living's Challenging Institutions: Community Living for People with Ongoing Needs.[8]

Hornsby Challenge

Hornsby Challenge has developed a broad range of accommodation options required to meet the needs of a diverse group of people, for example:

• Groups of three people living together
• Sharing with another person without a disability
• Sharing with a person with a disability
• Living alone
• Living in a family home
• Supporting people who need nursing home care

A series of attitudinal and structural changes typify this approach, including:

• Considering what works best for each person
• Not being constrained by past or current options available
• Adopting flexible service structures and staffing
• Flattening management structures
• Maintaining flexibility in provision of housing
• Separating housing and support issues
• Making efficient and effective use of resources
• Focussing on skill-development
• Using generic services as far as possible
• Enlisting the support of family and friends

To provide support for people who presented with "severe challenging behaviour", Hornsby Challenge has developed a holistic approach to behaviour management. Hornsby Challenge staff believed that the people they were supporting were not developing social networks and were in danger of becoming isolated. Consequently, they:

• Establish the person's interests
• Research these interests
• Contact & visit a local group relevant to the interest
• Go with the person to the local group and facilitate interaction
• Withdraw from the group when internal supports are established

L'Arche

Provides family style homes & "lifestyle" support to people with a disability, using households & independent flats.

A number of L'Arche homes are established in a neighbourhood. Within this community, residents are encouraged to build their living skills in areas such as group living, work, recreation, and health.

The people with disability - and a support team of assistants, or support staff and volunteers - live and work alongside each other, with the explicit aim of ensuring the health and well being of all who live in the community. Support is provided for personal skills, with the intention that people will access the wider community, including the workforce.

Newfoundland - Canada

This deinstitutionalisation project had a partnership between two levels of government - Canada and Newfoundland and two levels of voluntary sector. Each person with a disability has maximum input into the planning process: their needs and wants are central to the planning process.

Newfoundland was committed to providing range of alternative accommodation to match accommodation to individual needs, including:

• rental housing (individually and shared)
• family living
• individualised living arrangements - eg a support worker's apartment was attached to a home; a new family home was found for one person, to facilitate her to live with her parents
• housing cooperatives
• four person group homes
• foster care

The "discharge plan" included:

• Pre planning: identifying individual likes and dislikes, abilities, challenges and aspirations
• Community based individual planning - involved the development of an individual support team, including families, friends, social workers, and a support consultant. This team was responsible for finding housing, employment, educational options; and facilitating social and leisure needs

It was the aim of the project that each individual should have a natural network of family and friends in the community.

Behaviour management specialists were employed to provide advice to the individual support teams and to help in the development of behaviour strategies to minimise challenging behaviours

New Hampshire - USA

• 12 agencies integrated to provide community based services: case management, family support services and respite.
• Private vendors were contracted to provide accommodation in 3-4 bedroom homes.
• Individual support systems were developed with a focus on quality of life issues.
• Properties are owned or rented.
• Behavioural support is provided that focuses on what the individual is trying to communicate - it is assumed that much "challenging behaviour" occurs in lieu of other forms of communication.
• There is no commitment to any one "preferred" model of service delivery; service systems are adapted to meet individual, ongoing needs.
• Purpose-built accommodation is believed to be "inflexible".

NIMROD

• A group housing accommodation model: 5 houses and 3 flats, each accommodating 4 - 6 people.
• Paid support staff provide individual planning and individual teaching, with a keyworker for each person.
• Access to social workers and psychologists, and volunteers.
• Focus on increasing family and/or social contact.
• The service is not exclusively for people with disability.

Conclusion

A range of accommodation and support models must be considered for people with disability who are currently long-term institutional residents and who have complex medical and/or behavioural needs. This is no less true for people with disability who are already living in the community.

It is inappropriate to begin by considering the applicability of existing service models to the population of people with disability currently in large residential centres, without identifying first their specific, individual needs and aspirations based upon informed choice.

It is possible that purpose built accommodation will be required and, to avoid the "inflexibility" of such accommodation suggested by the New Hampshire project (above), we strongly recommend that it should be built according to the principles of universal housing design. Indeed that recommendation extends to all new dwellings, of any type, regardless of the support and intervention that may or may not be required by prospective occupants.

It is important, therefore, that the Department works in partnership with housing agencies to maximize accommodation options, as has been emphasised in the State Government's existing Disability Policy Framework.[9] Importantly, we note, the Disability Policy Framework also stresses that service planners must accommodate the specific religious, cultural and linguistic needs of individuals.[10]

Quite apart from the discussion above of possible models of accommodation, the Disability Council believes that there is an urgent need to maintain and improve the physical environment for people who continue to live in large residential centres, until such time as the process of devolution is completed. The 1997 Performance Audit Report warned that:

There is now the danger that in these institutions, which are marked for transition to community based facilities, the services and protection will continue to decline due to the lack of attention and funding, thus further aggravating the poor state of affairs. It is for this reason staff in the centres say "close us down, don't run us down".[11]

The Disability Council visited a large residential centre during 2004 and noted that in some residential units, living conditions could only be described as shameful.

Is the Disability Policy Framework the "framework for future service development" promised in the 1994 discussion paper? The DPF does not refer to The Valued Norm; it does however have the stated objective of developing a co-ordinated approach across Government to the planning of accommodation and support services to people with disability.[12]

This objective notwithstanding, it appears to us to be the case that, in the ten or more years since Disability Council was first consulted about appropriate models of accommodation, the plan to "develop more flexible and appropriate support and supported accommodation options" did not eventuate and, instead, infrastructure and support for people still living in large residential centres has dwindled to the point where the Audit Office's fears have been realised.

We remain hopeful, nevertheless, that a consensus can be built around a more positive future for people with disability with support needs to enable them to live, participate in and contribute to the socially rich and culturally diverse communities of NSW, now and in the future.

Andrew Buchanan,
Chairman, Disability Council of NSW
22 April 2005

 

Footnotes

1. NSW Audit Office (1997). Performance Audit Report. Large Residential Centres for People with a Disability in New South Wales. p ix.
2. Department of Ageing, Disability & Home Care (2004). Models of Supported Accommodation for People with a Disability: A Discussion Paper Inviting Feedback. p3.
3. Ageing and Disability Department (1998). Disability Policy Framework. p7.
4. Office of the Public Advocate (2002). Accommodation Models Discussion Paper. p 9.
5. Conway, R., Bergin, L., & Thornton, K. (1996). Abuse and Adults with Intellectual Disability Living in Residential Services: A Report to the Office of Disability.
6. Disability Council of NSW (1994). Accommodation and Support Options for People with a Disability. p 27.
7. Ageing and Disability Services Directorate, NSW Department of Community Services (1994). The Valued Norm: Supported Accommodation for People with Disabilities.
8. Coalition Against Segregated Living (2000). Challenging Institutions: Community Living for people with Ongoing Needs (URL www.amida.infoxchange.net.au/REP/plainenglishchallenging_institutions_report.htm).
9. Op cit, p 6
10. Ibid, p6
11. Op cit, p ii
12. Op cit, p 9