The Rights of People with Disabilities: Areas of Need for Increased Protection: Chapter 4: Accommodation
The Rights of People with Disabilities: Areas of Need for Increased Protection
Chapter 4: Accommodation
- Issues Addressed
- Denial of Rights and Discrimination
- Commonwealth Involvement
- State Government Involvement
- Major Issues and Recommendations
This chapter concentrates on four main areas of accommodation. Project workers made contact with a range of people, including those with disabilities who live in the family home, in homes of their own, or in boarding houses, as well as people who are accommodated in either hospitals, nursing homes or staffed and non-staffed facilities such as group homes or hostels.
The main questions to emerge include
- what is the Commonwealth's involvement in the provision of accommodation for people with disabilities?
- what programs exist, what are the policies of these programs, and do these programs complement or contradict each other?
. what is the impact of deinstitutionalisation?
. what discriminatory practices occur when people with disabilities attempt to purchase their own homes, or locate accommodation on the private rental market?
For people with disabilities, access to suitable accommodation is generally limited. Many people are still inappropriately accommodated in institutions, often because of the lack of other options. Access to private sector housing is often limited by cost. Access to public housing is becoming more difficult, and taking longer to obtain, for all applicants. In some instances, the policies of the relevant State or Territory Housing Authority, or the attitudes of landlords or agents, directly discriminate against people with disabilities.
It is against this backdrop (of limitations and unsuitability) that project workers have attempted to identify ways in which the right to appropriate accommodation could be better protected.
Principle 4 of the UN Declaration on the Rights of Mentally Retarded Persons states that:
Whenever possible, the mentally retarded person should live with his own family or with foster parents and participate in different forms of community life. The family with which he lives should receive assistance. If care in an institution becomes necessary, it should be provided in surroundings and other circumstances as close as possible to those of normal life.
Principle 9 of the UN Declaration on the Rights of Disabled Persons states that:
Disabled persons have the right to live with their families or with foster parents and to participate in all social, creative or recreational activities. No disabled person shall be subjected, as far as his or her residence is concerned, to differential treatment other than that required by his or her condition or by the improvement which he or she may derive therefrom. If the stay ofa person in a specialised establishment is indispensable, the environment and living conditions therein shall be as close as possible to those of the normal life of a person of his or her age.
The key elements of these two Principles are that people with disabilities should be able to:
- participate in community life; and
- live in the least restrictive environment possible.
The concentration in both these Principles on living with families is particularly relevant to children with disabilities. An arguable corollary is that adults with disabilities have the right to live in the community, with appropriate supports ensured.
Principle 2 of the Principles and Objectives attached to the Disability Services Act 1986, states that:
People with disabilities, whateverthe origin, nature, type and degree of disability, have the same fundamental rights as all members of Australian society.
Those interviewees who had lived in staffed facilities, including institutions and group homes, endorsed the Statement of Principles put forward in the Intellectual Disability Rights Service's book Rights in Residence. The Principles follow.
- Self-Determination: Each resident has the right to make his or her own decisions and choices in all aspects of his or her life.
- Freedom of Movement: Each resident has the right to move freely both inside and outside the residence.
- Freedom from Abuse: Each resident has the right to be free from physical, sexual, emotional and verbal abuse.
- Money Management: Each resident has the right to have full access to and control over his or her own money.
- Personal Possessions: Each resident has the right to have and use personal possessions.
- Privacy and Confidentiality: Each resident has the right to personal privacy, privacy in communications and confidentiality of personal records and information.
- Relationships and Sexuality: Each resident has the right to a range of relationships of his or her choosing. This extends to the right to express his or her sexuality and to be counselled about the practical, emotional and social aspects of sexual behaviour.
- Residency Agreements: Each resident (and his or her advocate, if applicable) has the right to be clearly and fully informed of the conditions of residence and the services to be provided. These conditions should be fair and capable of being enforced.
- Household Decisions: Each resident has the right to participate meaningfully in the decision-making of the household.
- Complaints: Each resident has the right to express personally or through an advocate his or her complaints without fear or reprisal, and to have them investigated and resolved quickly and fairly.
New Directions states that the major problems associated with the provision of accommodation and related support services for people with disabilities include:
- the lack of community based accommodation, especially for people with intellectual disabilities; the unduly fragmented organisational arrangements for the Federal and State Governments' accommodation and related support service programs;
- the significant variation in funding provisions across Commonwealth programs providing accommodation assistance to people with disabilities. (This has two adverse effects: it creates incentives for the establishment and operation of institutionalised rather than community based accommodation and it results in inequitable access to Commonwealth financial resources provided for accommodation programs);
- the poorly developed capacity for strategic service planning;
- the need for improved accountability for and equity of access to accommodation programs;
- the extremely limited involvement by disabled people in the design, management and review of accommodation facilities and related support programs; and
- the lack of measures such as bond and establishment loans to assist people moving from institutions into the community.
Since New Directions was published, some of these problems have been addressed. Other problems remain, and of particular concern is the lack of community based accommodation.
During 1988 the Australian Housing Research Council published a discussion paper entitled Housing Impact of Deinstitutionalisation Policies. The paper defined deinstitutionalisation to refer to current moves away from providing accommodation and services for people with disabilities in large, segregated facilities (hospitals, training centres, nursing homes) in favour of community based supported living arrangements in ordinary houses in ordinary neighbourhoods. It focuses on the impact of such deinstitutionalisation policies on the demand for housing, particularly public housing, by people with disabilities. Despite its title, it is not concerned solely with accommodation needs of people currently in institutions, but extends to identifying appropriate housing options for people already in the community (many of whom have never been in institutions). It is also concerned with the links between housing supply and provision of personal and domiciliary support services. The study covers the full range of disability groups - people with intellectual, sensory, physical or psychiatric disabilities (or any combination of these).
The Commonwealth is involved in the provision of accommodation for people with disabilities in five different areas:
- programs funded through the Disability Services Program of the Federal Department of Community Services and Health, and the Disability Services Act;
- the Commonwealth State Housing Agreement, and the effect this Agreement has on the policies of State Housing Authorities;
- programs funded through the Home and Community Care Program of the federal Department of Community Services and Health;
- the provision of capital grants under the Aged or Disabled Persons Homes Act 1954 to local government or non-profit organisations for provision of self-contained units, hostel or nursing home accommodation for aged or disabled people;
- sixty-nine Special Purpose Nursing Homes, which have been transferred from the Aged Persons Residential Program to the Disability Services Program. Twelve hostels which cater predominantly for younger people with disabilities have also been identified. In addition, there are approximately 1800 younger people with disabilities in nursing homes for the aged, and 450 people in subsidised hostels for the aged.
This section concentrates on the first three areas of Commonwealth involvement.
Two of the Principles and Objectives of the Disability Services Act have been referred to in the Introduction.
The Disability Services Act nominates two accommodation service types which the Commonwealth is prepared to fund:
- Accommodation Support Services: defined as 'services to assist persons with disabilities to develop and maintain suitable residential arrangements in the community';
- Respite Care Services: defined as 'services for relief or assistance, for a limited period of time and whether on a planned or unplanned basis to:
- the families of, and other persons who provide care for or assistance to, persons with disabilities living in the community; or
- ... persons with disabilities living in the community'.
The range of accommodation types which can receive funding under these two categories is large, and enables the Commonwealth to meet some of the recommendations of New Directions. Information collected, however, from people with disabilities, parents and advocates, suggests that many organisations which provide accommodation services do not comply with the Principles and Objectives of the Disability Services Act. It will be important for the Disability Services Program to ensure that the transition date of 1992 is adhered to by rganisations which provide accommodation services.
The Attendant Care Scheme is also funded through the Disability Services Program. Project workers collected information which suggested that some people with physical disabilities found the eligibility criteria too restrictive. There was particular concern regarding the necessity to have been permanently resident in a nursing home, or a long stay patient in a hospital, before being eligible for attendant care services. Some interviewees felt as well that the maximum number of hours per week (28) of personal care precluded some people from utilising the Scheme.
As mentioned above, project workers interviewed a range of people from the States and Territories. Some of the interviewees' comments, which relate specifically to services funded under the Disability Services Act, are recorded below.
Australian Capital Territory
A number of services in the ACT provide group accommodation for people with disabilities. The danger with any such staffed facilities is that they become in fact 'mini-institutions', as one interviewee commented. He further commented:
Staffing restrictions, exploitation - they remain the same. It just happens in the community.
The challenge of staffed group accommodation then is to promote integration by accompanying a physical move to the community with individualised programs, freedom of sexual expression etc. One interviewee commented:
The houses are poorly furnished. Residents are swapped from house to house. And they work for the same organisation that provides accommodation. Despite policy commitments to normalisation and the principle of the least restrictive alternative, major service providers offer group accommodation which is restrictive and not integrated.
Comments which emerged from the public forums include:
- properly supported accommodation is equally as expensive as institutions, thus services are constrained when government expenditure is cut back;
- people with high support needs have no housing choices because of costs: therefore families who resist institutionalisation of their family member bear the full responsibility, which often creates great family distress;
- some accommodation for people with intellectual disabilities in the community is still isolated from the rest of the community, both by the distance between the houses and by staff attitudes that create dependency;
- many people in the community still hold fears and uncertainties about people with very visible disabilities. (Attitudes are often inflamed because of the lack of resources to support such people in the community and to re-educate the wider community). The 'harmless but different' behaviour, less conspicuous in the community at large, could be changed or modified if adequate training existed.
Some suggestions for change which emerged from the forums include:
- service organisations should enter into residential contracts with tenants, similar to those now required of retirement villages and those being developed for other services providing personal care services for elderly people (for example, see the Commonwealth Standards for Nursing Home Care);
- such contracts should state a tenant's rights to:
- a minimum standard of care;
- minimum standards of physical space, both private and communal;
- accountability for their care;
- accountability of residents to each other;
- security of tenure;
- move out, with adequate supports;
- appeal mechanisms that are consumer friendly and guaranteed access to an advocate or legal friend during proceedings.
The federal Home and Community Care Act 1985 attempts to provide realistic levels of support to help aged and non-aged people with disabilities to remain living in their own homes, and provides for cost-shared programs to do this, recognising the traditional role of both Commonwealth and State/Territory Governments.
Project workers identified some key concerns with the HACC Program. These included:
. although the target group includes younger people with disabilities, this group appears to be missing out in most States because of a bias towards home and community care services for the aged;
- existing services are poorly coordinated;
- younger people with disabilities who are Aboriginal or from non-English speaking background are particularly marginalised;
- the guidelines for the Attendant Care Scheme state that rejected applicants 'if appropriate...should also be advised of the availability of HACC personal care services in their State/Territory'; however, there are very few HACC funded services providing attendant or personal care;
- the practice of funding service models directly does not allow any differentiation between an individual's capacity to manage his or her own affairs and appears to conflict with the Disability Services Act Principle that:
...every person with a disability has the same rights as other members of Australian society to realise his or her individual capacity for physical, social emotional and intellectual development.
The information in this section covers two main areas:
- the report on the views of public tenants and community groups about the implementation of the 1984 Commonwealth-State Housing Agreement (the CSHA): Consumers Views on the CSHA, 1987; and,
- the material collected by project workers in each State/Territory, both from housing authorities and people with disabilities.
The CSHA is an agreement between the Commonwealth and the States and Territories. it is an agreement about housing policies, programs and funding arrangements. The current agreement was signed in 1984 and will run for ten years.
One question posed by Consumer Views on the CSHA was:
- what is the extent to which the State/Territory Housing Authorities (SHA) have succeeded in implementing the CSHA principle that relates to the access of people with disabilities to public housing?
The general answer to this question is stated as follows:
- The mainstream public housing system has scarcely begun to adapt to the needs of people with disabilities (physical, intellectual or psychiatric). All States claim to modify dwellings for tenants with physical difficulties when requested to do so, but few States have actively modified their policies to facilitate access for people with other forms of disability. In order to maximise the flexibility of stock and hence minimise the costs of one-off modification, the SHA's should build in certain design features when constructing or renovating dwellings.
Given that most people with intellectual or psychiatric disabilities are on low incomes and hence eligible for public housing, the SHA's have a potentially large role as housing providers. Progress will depend on the rate at which the State health and welfare authorities implement programs of deinstitutionalisation and normalisation. In Victoria, where some progress has been made, the failure in the recent past to tackle the question of housing has led to serious problems: large numbers of people have been discharged from state institutions into private sector boarding houses (Special Accommodation Houses) where neglect and abuse have been rife. The problem is now at least beginning to be addressed, and the Ministry of Housing has developed a number of programs to provide dwellings managed by community groups. However, there is too much emphasis on group living.
Specific comments in the situation on each State or Territory are given below.
New South Wales
The Department of Housing policy is a general policy which supports increased access to public housing for people with disabilities. In practice this has resulted in some increase in access for those with physical disabilities.
Advocacy groups for people with disabilities would like to see a specific allocation of public housing stock targeted to the disabled (5%). The Department's policy at present on the eligibility of people with disabilities to public housing sets out no conditions relating to ability to live independently, but there is a need to better coordinate support services.
Generally, there is a lack of appropriate housing stock for people with disabilities, but the Department has been undertaking spot-purchasing of appropriate properties when an application by such person/s has reached the top of the list. The lack of long term housing is creating problems in short and medium term housing, as people stay much longer than necessary through lack of alternative housing. At present, very few community housing organisations house people with disabilities, but there is a need to better coordinate the housing that is available. A central register which is regularly updated would be a good way of making this information available.
The question of access for people with disabilities (physical, intellectual or psychiatric) is now being taken seriously by the Ministry. In addition to the constraint imposed by the overall shortage of stock, other constraints include the lack of suitable dwellings (especially for singles) and the question of resourcing and management models. Access can be obtained either through the general waiting list or through special programs. When an applicant reaches the top of the waiting list, either a suitable dwelling is allocated or special modifications are made to the dwelling available.
Community groups (e.g. the Housing and Disability Working Group) strongly support the principle of open access, which implies the continuation of allocations via the general waiting list rather than only through special programs. A recent policy paper from the Housing and Disability Working Group Open Access Housing Policy (1986) argued that most people with disabilities do not need a group to act as an auspice i.e. they can have a direct tenant - landlord relationship with the Ministry of Housing.
People with disabilities have the right to access the type of housing stock they desire. This includes houses, fiats, units, rooming houses and granny flats. It should not be assumed that all people with disability need/want to live in a group household.
However, the Ministry of Housing's Group Housing Program is currently the major avenue for access to public housing. Dwellings are spot-purchased and leased to community groups to manage. The 1985-86 budget was $2 million and in 1986 some thirteen management groups were given allocations (out of forty-two groups that applied). The Group Housing Program should be considered in the context of the Victorian Government's policy on the deinstitutionalisation of services for people with disabilities. Hence the initiative lies with service providers who are prepared to act as management committees to both apply for dwellings and provide support services to the residents.
The question of the optimum role (if any) for these management committees has not yet been resolved. According to the Housing and Disability Working Group one possibility is that committees simply have a tenant support role, with all the tenants having a direct lease with the Ministry of Housing. In such a case a number of issues would need clarification:
- support versus intrusion;
- security of housing tenure versus transitional independence training programs;
- membership of the committee - extent of resident involvement;
- who actually provides the support: the committee itself or the community services which the committees would link tenants into?
At the moment, the local management committees lease their houses from the Ministry of Housing and are responsible for rent collection, tenant selection (and eviction) and tenant support. The rent formula is such that tenants on a statutory income pay 20% in rent, but the Ministry collects 15% less than the household's combined rent, allowing the management group to apply the difference towards vacancies.
One rental housing cooperative has been set up to cater for people with disabilities; they live in separate (not shared) households. The cooperative has emphasised tenant participation but has found this to be a demanding task.
The Ministry of Housing also spot-purchases houses to be used by the Community Residential Unit (CRU) program of the Office of Intellectual Disability Services (OIDS). A high level of staffmg is provided (not by the Ministry of Housing) and some of the people housed have had serious disabilities. Largely because of the staffing costs, there are now concerns that the Government will not proceed with the rate of expansion previously planned. Some 150 CRUs have now been set up.
Recently, work has begun towards a policy on the better coordination of support services for disabled people living in public housing. The Ministry of Housing, OIDS, AMIDA and the Western Region Housing Council are currently investigating the possibilities. The Housing and Disability Working Group has set up a sub-committee, convened by AMIDA, and the North East Office of OIDS has appointed a Housing Liaison Worker. The aim is to ensure that a disabled person has access to relevant services, such as Home Help and other domiciliary services, or the specialist services provided by OIDS. According to one model, the Ministry of Housing would accept responsibility for coordinating the delivery of these services, perhaps through a regional liaison officer, or by convening periodic meetings of the relevant service providers.
Project workers also sought the responses of people with disabilities to public housing policies, and a number of these comments are noted below.
New South Wales
The report by David Tait commissioned by the Disability Council of New South Wales entitled A Little Bit of Support Here and There cited one man's experience of life on the waiting list:
I've put my name on the waiting list of the Housing Commission and I've got nowhere. I've been on there for quite a while, because there's not enough Housing Commission places built yet, that's why. That's the sort of question. I had been on the special allocations housing list because I was bashed one year. And roughly about March they took me off that list because they don't think I am in a hurry for a Housing Commission...I felt sorry for those who wait and wait and wait and can't ever get a Housing Commission flat...like myself. 'Cos I'm on the pension it makes it damn bloody hard because you've got electricity bill, phone bill, you name it. And it stinks.
The first thing to emerge from the public forums was the general acknowledgement that the South Australian Housing Trust (SAHT) had a very good record as far as flexibility and landlord/tenant relations went. The following changes were suggested, however, to further improve the SAHT's services:
- that the Commonwealth/State Housing Agreement take note of the Costs of Disability paper produced by the Federal Office of Disability, and use it to determine an allowance for such costs when assessing rent;
- that the SAHT develop housing suitable for multiple tenancies, especially for people with disabilities who wish to live in either small groups of 2-3 or with 2-3 other tenants without disabilities who can provide some support for independence; . that the administrators of Home and Community Care Services and disability accommodation funding programs address the need for reliable and predictable independent living services to back up people with disabilities living in SAHT accommodation.
In practice, it has been difficult for people with disabilities to gain public housing because:
- the Housing Commission focuses on Home Purchase Plans, as opposed to public rental housing, and this often precludes people with disabilities;
- in many regional areas, the Housing Commission has not provided housing for community groups; and
- the Housing Commission focuses on family units in its provision of public rental housing, often to the disadvantage of single people with disabilities.
State Government Involvement
As well as the State/Territory involvement in the provision of public housing, a range of State Departments are involved in the direct provision of residential services for people with disabilities. In most States, Health Departments still provide institutional care, with accompanying moves to community accommodation to a greater or lesser extent.
New South Wales
The historical perspective on accommodation for people with a disability has been to place them in an institutional setting hidden away from the rest of the community and isolated from friends and family. The role and value of institutions remain an issue at the centre of much protracted and bitter debate in New South Wales.
The Richmond Program was launched under the previous State administration to transfer people with disabilities who did not require constant medical attention, out of institutions (generally Schedule V hospitals) and into staffed homes in the community. The program was given wide support by members of the disability movement and formally endorsed by such prominent organisations as Disabled Peoples International and the NSW Council for Intellectual Disability. They felt it to be in line with a more enlightened philosophy of accommodating people with disabilities in an atmosphere as close to normal as was feasibly possible.
The present State Government has announced the abandonment of the Richmond Program and the retention of large psychiatric hospitals that were earmarked for closure under the Richmond Program. This policy has been welcomed by some sectors of the community and roundly condemned by others. At the very least it is out of step with the now widely accepted policy of 'normalisation' for people with disabilities, and accommodation in the 'least restrictive environment'.
Institutional living could never be considered 'normal'. People who have spent a lifetime in a large hospital may not know what a kitchen looks like, let alone what it is used for, or what uncooked food looks like; they may never have had a place to be alone, always having had to share a room with several other people. In some instances private possessions might have been disallowed, extending even to there having been a communal stock of clothing. Even more worrying is the fact that the isolation from the general community may leave such people vulnerable to exploitation and abuse in an environment from which there will be no escape. One young man was placed for respite care in an institution whilst his parents took a vacation. He returned home without fingernails. An ombudsman investigation was unable to accept a staff explanation that the boy's fingernails were 'flicked' off by another resident.
The present government policy of institutional care could be interpreted as a denial of the rights of people with disabilities to live in the community like everyone else. It could be seen as a discriminatory segregation of a particular group of people. An example is the Government's closure of several community homes due for occupation by people with disabilities on the New South Wales Central Coast. This is despite the fact that individuals had already been advised of their relocation from a large and archaic institutional facility, and that all were looking forward to the move.
The justification offered was that the local community did not want people with disabilities living amongst them (in fact, a strenuous misinformation campaign was carried out concerning the effect of the cottages on real estate values and the alleged sexual perversion of the proposed residents). A policy of capitulation to the worst kind of prejudice is a deplorable policy for a government to endorse.
Residential facilities in New South Wales are run privately (usually by charitable organisations) or by the Department of Health. The Department of Health homes in particular have been developed in accordance with strong rights oriented policies which stress the right of residents to self determination. The extent of the application of these policies, however, varies in practice, with some services being more rights conscious than others. There may be some practical problems which need to be corrected - although in most cases, services are well aware of the difficulties and are striving to correct them.
One situation which disability workers frequently report is a lack of privacy for residents and the effect this has on maintaining intimate relationships. Most services have policies which seek to support the development of personal relationships, but some will not be able to offer a private place for couples to go. Some houses have shared bedrooms and few have bedrooms that lock. This obviously makes it difficult to develop and maintain a relationship.
Another concern expressed by some disability workers and people with disabilities is the lack of security for residents. Residents in group homes are licensees only, and do not have the protection of a tenancy. This leaves them vulnerable to eviction and fee increases without notice. An example of this is the recent increase in rent and lodging fees announced by the State Government. Fee increases which occur without notice (and which can even be back-dated) could be avoided by tenancy status being accorded residents.
In 1984 the Victorian Minister for Health (then responsible for the majority of govermnent services for people with intellectual disabilities) stated:
The Government has for some time considered that a community-based service system is the best method of providing services for intellectually disabled people. All people, whether or not they are intellectually disabled have a right to enjoy a quality of life which is as close as possible to that of any other citizen. Therefore, the Government's aim is to develop services for disabled people that are designed to encourage each individual to maximise his or her potential.
In 1986 the Intellectually Disabled Person's Services Act was introduced. This legislation promotes the idea that people with intellectual disabilities should have the same rights as other members of the community particularly in relation to accommodation.
For many years the Victorian Government has been working towards the provision of community-based accommodation for people with disabilities. There is, however, a disturbing gap between government intent and service practice.
There are currently 2,800 people presently residing in large Government institutions. An unknown but not insignificant number of people live in nursing homes, hostels and special accommodation houses. In May 1988 a report was released following a visit by 'community visitors' to Caloola Training Centre at Sunbury which houses 549 residents. The report of the visit states:
Most Caloola residents, when asked said they wanted to get out of Caloola.
This matter is urgent. Residents in Caloola cannot simply be placed on hold until the government gets around to them. In many cases their conditions are actively deteriorating. The Intellectual Disability Services Act says (s. 18) that a person may be admitted to an institution only if, inter alia, 'admission....provides the best possible choice of services for enhancing the person's independence and self-sufficiency and is least likely to produce regression, loss of skills, or other harm to that person'.
In Caloola this is a cruel joke. People who could communicate only by using communication boards find that the staff have not got enough time to stand around and watch them spell; after a few years without any opportunity to practice these skills, they lose them (Michael used a communication board at Special School but staff at his unit refused to use it because boards could get lost or stolen). People who were able to keep themselves clean lose their motivation (when he went to Caloola Bruce could shower and wash himself; now the staff hose him down). People who come in being able to feed themselves normally are never given a knife again. People who could walk become confined to wheelchairs (Shirley is losing her ability to walk because all she ever does is sit). People who could use their hands only with difficulty stiffen into permanent deformity (George had a twisted foot which made it difficult to walk; it could have been corrected with calipers, or he could have had a walking frame, but the staff thought he was too old for it to be worthwhile). People who are said to be without speech in the wards sing at school.
Many can read, but there is no reading matter available. People lose their social skills; they masturbate, eat out of rubbish bins, or piss in their pants because nobody expects anything better of them.
These things need not happen. They can be changed. They must be changed.
We have been horrified by the conditions we have found at Caloola. As community visitors we are [concerned that] Caloola does not meet community standards in any particular, and the community should not tolerate Australian citizens being held under these conditions any longer.
Australian Capital Territory
The Intellectual Disability Services section of the ACT Community and Health Services has a philosophy of care which states:
all the services, both clinical and residential, are based on the central ideology of 'normalisation'.
This philosophy emphasises the development of skills and activities that enhance the image and competency of the person with disabilities and has implications for:
- planned living environments;
- patterns and routines of daily life; and
- the rights of people with disabilities.
The Intellectual Disability Services section administers:
- Bruce Hostel (40 places in 4 villas);
- Melba Hostel (10 places for children/adolescents);
- John Knight Hostel (40 places in 4 houses);
- Ward 1OA at Woden Valley Hospital (12 places for people with profound disabilities of all ages);
- Group Housing (3 houses with 6 residents each).
Interviews with residents and advocates indicate a number of deficiencies in the hostels. These include:
- some people with disabilities have been inappropriately placed in such accommodation, often because other options do not exist;
- allegations of physical and sexual abuse were raised;
- freedom to make choices in relation to diet, clothing, activities, possessions is often restricted;
- rights related to privacy, sexual expression, freedom of movement, and money management are sometimes breached.
Ward 1OA at Woden Valley Hospital provides accommodation for 12 people with profound disabilities. For a number of years alternative accommodation has been available for these people in the form of a hostel in a suburb of Canberra. Although the Hospital is arguably the most restrictive environment possible for the residents, staffing disputes between the ACT Community and Health Services and the Royal Nurses Federation have precluded any move to the new hostel. For a government agency which espouses 'normalisation' as a guiding principle, the continued accommodation of people in Ward 1OA is untenable.
(Note: shortly after the preparation of the ACT report people resident in Ward 1OA were finally relocated to the Chapman Hostel.)
The Intellectual Handicap Services (IRS) Section of the Department of Family Services and Housing Welfare is the relevant State authority. Currently, IHS accepts the principle of normalisation, has adopted the concept of the least restrictive alternative and is moving towards community integration and independent living strategies.
IHS currently operates three centres:
- Basis Stafford at Wacol;
- Challinor Centre at Ipswich; and
- Sandgate Centre at Sandgate.
These centres accommodate approximately 570 people with intellectual disabilities. These centres, in theory and in practice, are antithetical to the stated policies of the IHS. Many people, too, are moved from all other regions in the State to these centres, because of the lack of appropriate accommodation in regional and isolated centres.
The NT Department of Health and Community Services does not appear to be involved in the direct provision of accommodation services for people with disabilities. This is a major cause of concern and is the subject of considerable public comment and controversy.
The purpose of the Home Services Program of the Authority for Intellectually Handicapped Persons is to ensure 'that all people with an intellectual handicap have access to a positive home environment which best meets their individual needs'.
The Operational Plan of the Program states that the key features of a positive home environment include:
- a safe haven and shelter;
- opportunities for personal growth and development;
- a strong social network of mutual dependency and personal involvement;
- a balance of rights and responsibilities to protect the interests of individuals and the household.
Other service principles specific to this program are:
- self determination: peoples' right to pursue their own preferences and aspirations;
- dignity and value: services should enhance the dignity and social value of people;
- tailored services: services should meet the unique and specific needs of individuals.
The current program costs $33.lm per annum to operate of which $30m is spent on 800 residents in full-time care - n average of $37,000 per person per year, while $3.lm is spent to support 3,300 people in the community - an average of $1,000 per person per year.
The key problem is that there is not enough to go around, in particular:
- the community-based support services are inadequate, resulting in extensive demand for residential care;
- most of the residential facilities are below acceptable standards but cannot be closed due to the extensive demand for residential care;
- policies and practices inadvertently encourage residential care as a primary solution to community-based problems.
Community-based support services require the following common elements:
- home support to help families cope with the additional burdens of the disabled member;
- home training to develop independent living skills;
- specialist intervention to control inappropriate and anti-social behaviour;
- supported community living to assist independent living in the community ( e.g. 'Plus One' to provide a substitute family home for children and juveniles);
- employment and leisure options to provide constructive activities during the day.
A Facility Plan exists to replace 16 sub-standard hostels accommodating 470 residents with 74 group homes and duplexes in the community over an 11 year period. Total capital costs of $18m are involved, including the necessary employment options, of which $9.8m can be recouped by the sale of facilities as they close. Operating costs are estimated to increase by $1.lm including $9.6m for 'Plus One' foster care of children. Implementation would be overseen by a steering committee with consumer, trade union and management representation.
Comments raised at the forums include:
- there are still large numbers of people with intellectual disabilities living in institutions in situations that deny privacy, choice and freedom of association;
- the service industry often assumes an attitude of 'ownership' towards its consumers; this ownership extends to choices of accommodation and to handling of consumers' money
- both agency and government accounting requirements perpetuate the practice of the service taking all the consumer's money directly and possibly paying out a bit of 'pocket money' - there is no individual accounting to consumers as to where their money has gone or what it has been spent on;
- residents of institutions are often at risk of attack from other residents because of the clustering of a lot of people with behavioural difficulties, because of the design of the facilities and because of the pressures and culture of institutional life itself.
Quite a few people with long standing psychiatric disabilities or intellectual disabilities are caught in the vicious circle of discharge and admission. They feel they are constantly getting started. On discharge, they have no goods for setting up house in the community: no kitchen ware, no bedding, few clothes, no furniture, radio, and television set. Setting up house takes a lot of energy and running around - even if it is to Salvation Army stores or garage sales (usually by bus, because they have neither a car nor friends with cars).
Lack of support and easy access to crisis advice is often a contributing factor to breaking down in the community. Short-term stay and deinstitutionalisation policies as well as the persons own desire to get on with life in the community are reasons for early departures from institutions.
There is nowhere to store goods cheaply and safely if a person is hospitalised. If this occurs quickly as a result of a crisis, often the person's goods have been disposed of by other residents of the boarding house or landlords.
Major Issues and Recommendations
To ensure that people with disabilities have the right to accommodation in the community, with the accompanying right to participate in all social, creative or recreational activities, and to remain out of specialised establishments unless it is indispensable, it is essential that Federal and State Governments respond to discriminatory practices highlighted in this chapter.
Accordingly, it is recommended that:
- the Disability Services Program of the Federal Department of Community Services and Health ensure that all accommodation services funded under the Disability Services Act comply with the Principles and Objectives of that Act;
- the Principles and Objectives of the Disability Services Act be accepted and observed by other federal departments providing funds or services for people with disabilities;
- the Disability Services Program consider broadening the eligibility criteria for the Attendant Care Scheme so as to include people not resident in nursing homes;
- the Home and Community Care program give practical effect to its policy direction of providing services for younger people with disabilities;
- all State and Territory Housing authorities, as signatories to the Commonwealth-State Housing Agreement, increase the role they play in providing public housing for people with disabilities;
- all State and Territory Governments accept that people with disabilities have the right to live in community based accommodation, and that unnecessary and inappropriate institutional accommodation amounts to an infringement of this right;
- all State authorities involved in the provision of accommodation for people with disabilities accept as guiding principles the principles of normalisation and the least restrictive alternative; . all State authorities license and monitor carefully the operation of boarding houses;
- the rights espoused in the Intellectual Disability Rights Service's book Rights in Residence (1988) be considered by all State authorities providing accommodation services for people with disabilities;
- appropriate anti-discrimination legislation be enacted by Government in those jurisdictions without such specific legislation;
- discrimination in the private rental market be expressly prohibited, where such laws do not already exist.