Summary Report on Younger People with a Disability living in or at risk of entry to aged care facilities Phillip‟s story Age: 44 years Location: Crows Nest Diagnosis: Acquired disability – spinal injury Phillip Moved into the local aged care facility in his home town about two years ago. Prior to that he had lived at home following a diving accident that left him with quadriplegia. His army friends had modified his parent‟s home to make it wheelchair accessible. When Phillip was living at home he had received a funding package from DSQ and domiciliary nursing services. However, Phillip said his father had health problems and could no longer lift him so it seemed the logical choice to move into the local aged care facility as there were no other accommodation options locally. Phillip currently shares a room with an older gentleman. He said that the only thing he wanted was his own room. He said the staff had provided him with access to a separate living room in the old hospital where he could work on the computer, watch videos and play his music. The old hospital was used for staff training and offices. He said it was great. When asked if he can get out often, he said yes, he can go down to the local shops or to his parents‟ home. If any of the staff are going to Toowoomba he hitches a ride with them in the wheelchair accessible bus and goes to the movies. When asked if he would consider moving into shared accommodation, he said that it would have to be local. “I wouldn‟t move to Toowoomba. It would have to be with no more than two to three people because it is difficult to find people who get on with each other. I don‟t like sharing a bathroom. It would need to have ready access to nursing staff as I‟ve just spent three months in Toowoomba Hospital.” When asked did he think he would benefit from a package to increase his access to the community, he said “I had a package previously when I was at home, but this stopped when I moved into the aged care facility”. He said “there aren‟t enough packages to go around. Other people‟s needs are greater than mine. Someone‟s need for showering and dressing assistance should take precedence over me getting a package to go out. Just a room of my own would be fine.” (Used with Phillip’s permission) Table of contents Ministers‟ foreword. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . 2 1 Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3 1.1 Purpose of this report. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3 1.2 Context . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 2 Project methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4 2.1 Phase one research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4 2.2 Phase two research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 3 Research results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6 3.1 Younger people assessed by ACAT in a calendar year . . . . . . . . . . . . . . . . . . . . . . . 6 3.2 Younger people living in aged care facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 3.3 Younger people at risk of entry to aged care facilities . . . . . . . . . . . . . . . . . . . . . . . . .10 4 Stakeholder consultation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11 5 Literature review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 6 Alternative accommodation and support models. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .14 6.1 Guiding principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 6.2 Alternative long-term accommodation and support models. . . . . . . . . . . . . . . . . . . . . 15 6.2.1 Age-appropriate unit or wing with additional services. . . . . . . . . . . . . . . . . . . .15 6.2.2 Cluster housing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 6.2.3 Group homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 6.2.4 Independent living or living with family . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .18 7 Strategies to manage the demand for permanent entry to aged care facilities. .. . . . . . . . . .19 8 Younger people with a disability in residential aged care initiative . . . . . . . . . . . . . . . . . . . .20 Ministers’ foreword It gives us great pleasure to release this report, the result of a collaborative project between Disability Services Queensland and Queensland Health investigating the needs of younger people with a disability living in aged care facilities. Queensland Health and Disability Services Queensland collaborated in the design and implementation of a profiling exercise – initially of people under 50 years of age with a disability residing in Queensland Government-run aged care facilities, and then a more comprehensive study of people living in, or assessed as eligible for, Commonwealth funded aged care facilities in Queensland. Thank you to the people with a disability, their families and carers who contributed to this report. Your views, along with those of staff in aged care and disability services, have greatly contributed to a better understanding of the needs of younger people with a disability living in or at risk of entry to aged care facilities. This report identifies alternative support models based on the findings of research, including the results of stakeholder consultations and international literature about this area. On Friday 10 February 2006 the Council of Australian Governments announced a joint initiative between the Commonwealth, State and Territory Governments to reduce the number of younger people with a disability living in aged care facilities. The Queensland and Commonwealth Governments each committed $23.9 million, a total of $47.8 million over five years. Over the five years of the initiative, Disability Services Queensland will focus on achieving the following outcomes: Assisting younger people with a disability to move to more appropriate accommodation Diverting younger people with a disability who are at risk of entry to aged care facilities. Improving disability support services to younger people with a disability who remain in aged care facilities. This important program builds on the project findings presented in the report. The Honourable The Honourable Lindy Nelson-Carr MP Stephen Robertson MP Minister for Disability Services Minister for Health 1 Background 1.1 Purpose of this report This report summarises the joint project between Disability Services Queensland and Queensland Health on people under 50 years of age at risk of entry or living in aged care facilities in Queensland. It outlines major research results, including findings from stakeholder consultations and a literature review. 1.2 Context In recent years there has been a developing realisation throughout Australia that it is inappropriate for younger people with a disability to reside in aged care facilities. The Commonwealth-State/Territory Disability Agreement Bilateral Agreement (2002–2007) commits Queensland to the National priority of strengthening across Government linkages, specifically to activity in relation to the aged care-disability interface. The Bilateral Agreement and associated work plan identifies the issue of younger people (under 50 years of age) inappropriately placed in aged care facilities (including nursing homes). In 2004, Disability Services Queensland as part of its obligations under the Bilateral Agreement developed a joint project with Queensland Health to profile the needs of younger people with a disability living in Commonwealth Government subsidised aged care facilities in Queensland, and those at risk of entry to aged care facilities. The aim of the joint project was to provide a better understanding of this population and a basis for exploring alternative models of support and accommodation. In 2005, the Parliament of Australia‟s Senate Community Affairs Committee held an inquiry into aged care. This identified a need for a new service delivery model for younger people with a disability. It recommended that State, Territory and Commonwealth Governments work cooperatively to assess the suitability of each younger person‟s location, provide alternative accommodation, and ensure no further younger people are moved into aged care facilities because of a lack of alternative accommodation options. In late 2005, the Council of Australian Governments (COAG) examined the issue further as part of considerations about health system improvements. In February 2006, COAG announced its commitment to a new five-year program to reduce the number of younger people with a disability living in aged care facilities, with funding of up to $122 million from the Commonwealth and up to $122 million from states and territories. 2 Project methodology 2.1 Phase one research Phase one found there were 232 people under 50 years of age living in Commonwealth Government subsidised aged care facilities in Queensland. Of these, 24 people lived in state government aged care facilities. Before broader profiling of the total population, Queensland Health conducted a trial of the profiling methodology on the care needs of the sample group of younger people living in state government aged care facilities from March to October 2004. National and international literature was reviewed, the demographic profile and care needs of people assessed by Aged Care Assessment Teams (ACATs) in a calendar year was analysed, and key 1 stakeholders were consulted. In 2004, Queensland ACATs assessed 30, 560 people, of which 335 were under 50 years of age (1 per cent). Between 1 July and 31 December 2004, ACATs had assessed and approved 132 people under 50 years of age for permanent aged care. Of these, 56 per cent or 74 younger people or their families agreed to provide follow-up information to the project team as part of phase two of the research. 1. ACATs operate as the Commonwealth Government’s delegate for determining if a person requires residential aged care and approving admission to Commonwealth subsidised residential aged care beds 2.2 Phase two research Following review of the trial methodology in phase one, the project was expanded to all younger people under 50 years of age living in aged care facilities or at risk of admission to an aged care facility in Queensland. This was undertaken from January to December 2005. This phase also included a broader literature review, further data analysis, the development of possible principles and models of support, and the development of preliminary costings for alternative support for this population. Phase two research aimed to: develop a profile of younger people living in or at risk of entry to aged care facilities in Queensland understand this group‟s care and support needs explore a range of alternative accommodation and support options that may better meet this group‟s needs develop preliminary costings based on the findings. Of the 232 younger people with a disability under 50 years of age living in aged care facilities in Queensland, 106 (46 per cent) agreed to participate in the research to enable the project team to gain an understanding about the person‟s: entry to an aged care facility or permanent care, and factors influencing the decision disability and health care needs, including a review of demographic, medical and care plan information, and Residential Classification Scale (RCS) rating access to relevant services level of awareness, decision-making capacity and communication skills, and contact with family, friends, peers and the community. Of the 232 people with a disability under 50 years of age assessed and approved by ACAT for admission to residential or community aged care from 1 July to 31 December 2004, 74 (56.1 per cent) agreed to participate in a telephone survey to determine issues around their current living situation. Aged care providers were consulted about why they provide permanent accommodation to younger people and the issues providers face in caring for and supporting this group. They were also consulted on strategies they use to meet the needs of younger people within the aged care setting. ACATs were asked about the referral process for younger people, factors influencing the decision to refer a person to either long-term aged care or to remain in the community, operational issues and possible alternatives suitable for younger people with a disability. Key stakeholders from Disability Services Queensland, Queensland Health, the Department of Health and Ageing and the Department of Families, Community Services and Indigenous Affairs were also consulted throughout the project. 3 Research results 3.1 Younger people assessed by ACAT in a calendar year An analysis of data on younger people assessed by ACATs across Queensland in the 2004 calendar year was undertaken. Key findings are as follows: Demographic information of younger people assessed by ACAT Males were slightly over-represented in terms of the total population under 50 years of age (52.2 per cent of people assessed were male).The majority of people assessed were between 40 and 49 years of age (68.1 per cent). Thirty people (9 per cent) were Aboriginal and two (0.6 per cent) were Torres Strait Islanders. ACAT recommendations for younger people with disabilities Over half of the younger people assessed were recommended to live in the community. Those recommended to live in the community were more likely to be: – self-referred or referred by a family member or a community health professional – assessed in the community – assessed as moderately dependent in activities of daily living – aware of time and place – less likely to require occasional or frequent assistance with sleep disturbance or challenging behaviour. Younger people recommended by ACATs to live in aged care facilities (high or low care) were more likely to be: – referred by a hospital or an aged care facility – assessed in hospital or an aged care facility – assessed as totally dependent in daily living activities – unable to perform or require substantial help with bowel control, bladder control, mobility or chair–bed transfers – unaware of person or place – in need of occasional or frequent assistance with challenging behaviours and sleep disturbance. 3.2 Younger people living in an aged care facility Analysis of the RCS data on the 232 people under 50 years of age living in aged care facilities produced the following findings: Most people (73.7 per cent) were between 40 and 49 years of age, with 4.3 per cent under 30 years of age. More than half (53 per cent) lived in South-East Queensland (Brisbane, Gold Coast, Sunshine Coast). A further 10.3 per cent lived in Far North Queensland, with the remaining third scattered throughout the rest of the state. The majority (81.5 per cent) were considered to have high care needs. People living in remote or very remote regions of Queensland were less likely to be considered high care (72.2 per cent) than people living in other areas (82.2 per cent). This group‟s overall support needs are higher than those of older people in aged care facilities. Almost two-thirds (63.4 per cent) of the group are considered to have high or very high care needs in comparison with older people. A seven-year analysis of RCS data (1999–2005) on people living in aged care facilities identified the following trends: The overall number of younger people in aged care facilities in Queensland varied from 220 to 260 (snapshot day data). The number of admissions of younger people in a financial year ranged from 81 to 99. The number of discharges of younger people in a financial year ranged from 51 to 71. The average length of stay for younger people ranged between 22.5 months (1.9 years) and 35.9 months (3 years). Almost half (46.6 per cent) had lived in an aged care facility for between two and four years. The length of stay for 18 per cent of this group was nine years or more. 2. The Commonwealth Government, through the Department of Health and Ageing, subsidises residential aged care services. These subsidies are allocated in accordance with the Resident Classification Scale (RCS) introduced in conjunction with the Aged Care Act 1997. Each resident is assessed and allocated an RCS category from one to eight depending upon their level of assessed care needs. One being the highest category; one – four indicating high care needs; and five – eight signifying low care needs. However, the RCS appraisal does not consider all of a resident‟s care needs but focuses on factors identified as contributing most significantly to the total cost of a person‟s care. Profile of younger people living in residential aged care facilities One hundred and six people with a disability living in aged care facilities or their significant other consented to participate in the research and provide detailed information to the project team on their care and support needs. The project team reviewed the younger person‟s care plan supplied by the aged care facility, and met with the younger person, their significant other and facility staff. Seventy-four people had high care needs and 32 had low care needs. The majority had an acquired disability (68 people or 64.2 per cent). The most common disability was acquired brain injury (37 people or 34.9 per cent), followed by intellectual disability (18 people or 17 per cent), cerebral palsy (13 people or 12.3 per cent), and Huntington‟s disease (9 people or 8.5 per cent). Most people in the sample had more than one disability. The most common secondary disability was epilepsy (34 people or 32.1 per cent), followed by an intellectual disability (22 people or 20.8 per cent) or diabetes (8 people or 7.5 per cent). The project team classified people’s needs as follows: High care needs: younger people with a disability who required 24-hour supervision, seven days a week and one or more carers to provide hands-on assistance with showering, dressing and toileting (activities of daily living). Low care needs: younger people with a disability who required 24-hour supervision, seven days a week, but only required prompting (gestural assistance) by one person with showering, dressing and toileting (activities of daily living). Profile of younger people with high care needs living in aged care facilities Most people: were 40 to 49 years of age, however, 21 people (28 per cent) were younger than 35 years of age were fully dependent on two to three staff to assist with showering, dressing, toileting, eating, mobility and mobilising in bed had multiple technical needs including incontinence management, bowel management, PEG feeding (being fed through a tube) and monitoring for choking that require the oversight of a registered nurse had high equipment needs (including hoist, slide sheet, covered bed rails, mobile shower chair, manual wheelchair, pressure-relieving mattress and flotation chair)that require hands-on assistance from staff had emotional/social needs which were not met or were only partially met had no or mildly challenging behaviours. However, 11 per cent had severely challenging behaviours where they were a risk to themselves or others. Profile of younger people with low needs living in aged care facilities Most people: were 45 to 49 years of age required supervision and prompting from one staff member with showering, dressing, toileting and eating had minimal technical, equipment and consumables needs had emotional/social needs which were not met or were only partially met. Also in this group: more than a quarter exhibited no behavioural issues a quarter were reported to exhibit antisocial behaviour that may indicate that an aged care facility was inappropriate for these people a quarter were reported to exhibit challenging behaviours that put themselves or others at riskless than a quarter had moderately challenging behaviours that had negative social consequences. 3.3 Younger people at risk of entry to aged care facilities Research was undertaken with ACATs to better understand the needs of younger people with a disability at risk of entry to aged care facilities. The 74 younger people or their significant other who consented to participate in the survey were approved for aged care services by ACATs. Follow-up occurred between 5–16 months after being approved. Of these people: 12 (16.2 per cent) had permanently entered an aged care facility 3 (4.1 per cent) had died 17 (23 per cent) were waiting placement in an aged care facility, of these 17 people, 7 were waiting in hospital, 7 were waiting in their own or another person‟s home being supported by relatives and community services, two were living in disability respite or rehabilitation facilities (and one wasn‟t stated) 40 (54.1 per cent) reported to be waiting for age-appropriate permanent and/or respite accommodation. Of these: – 26 (65 per cent) were being supported by their parents with the remainder supported by their spouses/partners or siblings – 16 (40 per cent) had their home modified – 14 (35 per cent) had accessed specialised equipment – 19 (47.5 per cent) had accessed residential respite in an aged care facility – 7 (17.5 per cent) received disability support services – nearly half the group received assistance with personal care through the Home and Community Care program, 4 (10 per cent) reported receiving a Community Aged Care package and 2 (5 per cent) were in supported employment. 4 Stakeholder consultation As part of this project, consultation was undertaken with people living in aged care facilities, their families (including spouses, ageing parents and siblings), aged care facility staff, ACATs and Disability Services Queensland regional directors. Key messages from stakeholder consultation are provided below: Younger people entered aged care facilities generally due to a lack of alternatives within their communities, following increasing or changing needs and the inability of their carer or current support arrangements to continue to support them. The benefits for younger people living in aged care facilities generally related to the level of physical care and support provided in these settings and that the person could remain near family if the facility was located close by. The negative outcomes for younger people living in aged care facilities were that their social needs were not met, they were often bored, and did not access relevant community activities or appropriate therapy services to meet their needs. Where a younger person may seek to stay in the aged care facility, it was thought that younger people should be able to access community activities, therapy and other services to meet their needs. A specific facility or wing for younger people within an aged care facility was seen as a solution to the current situation. Where younger people move to the community, solutions varied from group home to individual support appropriate to the level of need. Most people reported the need for a whole-of-government response to meet this group‟s accommodation, disability support and health needs. ACATs identified an increasing demand from younger people to access aged care facilities due to a lack of community supports. Disability Services Queensland staff expressed the need for a joint disability and ACAT assessment process when the ACATs were assessing younger people, to ensure all needs were considered. 5 Literature review As part of this project, national and international literature was reviewed to inform the development of potential alternative support models for younger people with a disability living in Queensland-based aged care facilities. The literature review identified the key areas of need of a younger person with a disability as: accommodation support; access to the community and lifestyle support; time with family and friends; health and medical services; nursing care; therapy and rehabilitation; safe, suitable and modified housing; case management; equipment; consumables; transport; advocacy; and assisted and substituted decision making. Addressing these key areas of need would enable a person with a disability to live a full and productive life. Literature from the United States and Europe indicated a consistent trend towards privatisation and decentralisation when developing and providing alternative accommodation and support options for younger people. Services tend to be individualised and flexible. Smaller community-based facilities have been associated with better outcomes. People living in larger congregate-care settings tend to have more challenging behaviours and greater general health needs. Key themes when developing alternative accommodation models include the following: The importance of choice, autonomy, independence, inclusion, participation, rights and the principle of the least-restrictive alternative. No single model of alternative accommodation can address the diversity of needs among people with disabilities. Small-scale, community-based facilities are supported and seem to facilitate positive outcomes. Components of care practices in community-based settings should include: – continuous assessment, planning and review – dedicated and specialist staff – a range of supports including personal care, long-term care programs, respite care and psychological/social work services – social and recreational opportunities – appropriate therapy – assistive and adaptive technology Individual and flexible solutions are preferred over placing an individual into an existing model. There is a wide variation in costs within community-based models. Dedicated funding programs and collaborative/joint venture partnerships between government, non- government and private providers need to be developed to achieve sustainable alternatives. Based on the literature review, the following five areas need consideration when developing models for younger people with complex and high clinical care needs: accommodation structure or design programs or components care or practice procedures quality assurance program funding framework. Consideration must also be given to the intended outcomes for younger people with complex and high clinical care needs. The care components will differ depending on whether accommodation is provided for the purpose of transition, rehabilitation or maintenance. 6 Alternative accommodation and support models 6.1 Guiding principles Based on research, the following six guiding principles for providing suitable support to younger people with a disability are recommended: Younger people with a disability should have access to a lifestyle that is age appropriate, culturally meaningful and supports the development of the individual to their fullest potential. Choice, autonomy, participation, dignity and human rights should be demonstrated when younger people with a disability make choices about how they live. A person-centred approach that focuses on the individual‟s needs, preference sand interests should be used when developing supports. Care should be flexible in adapting to an individual‟s changing needs, and should be subject to ongoing review. Quality services that meet appropriate disability and health care standards should be provided. Services should be provided in the individual‟s community of origin or choice and focus on enhancing meaningful inclusion and participation in the community, as appropriate to the individual‟s interests and abilities. Collaborative approaches and strategies involving government, non-government and private providers should be encouraged. In addition, the project identified factors that may affect the success of alternative accommodation and support models including: availability of skilled staff availability of service providers client/consumer choice about the location and style of housing and who they wish to live with significant other‟s choice rural and remote issues, as solutions often require a „critical mass‟ availability of specialist services staff ratios and staff training access to equipment and transport transitional arrangements prevention, including rehabilitation, transition and assessment protocols diversity of models required funding levels. 6.2 Alternative long-term accommodation and support models Based on research conducted during this project and the six guiding principles, the following four possible long-term models were identified: age-appropriate unit or wing with additional services cluster housing group homes independent living or living with family. 6.2.1 Age-appropriate unit or wing with additional services This model refers to: additional services being provided to people living in an aged care facility a specific wing as part of an aged care facility, or a separate age-appropriate unit/facility on an aged care site. Using an existing aged care complex/facility allows for a range of models to be developed, ensuring age- appropriate care and services are provided by a range of staff, including clinical and nursing staff. As this model would be established within an aged care setting, design of disability and health support services would need to be appropriate to the high-level care needs of younger people with a disability. Advantages Access to specialist clinical and nursing services, with a higher staff-resident ratio. Cost-effective as it does not duplicate the current service system and uses existing aged care facility infrastructure. Improves quality of life for younger people living in aged care facilities and provides some people with potential for relocating to the community in the long term if access to therapy and rehabilitation enhances their capacity. Security of tenure may be maintained. Limitations Requires a significant population base within the geographical location of the aged care facility to build a separate wing or unit. Does not provide an alternative to the aged care setting for younger people and does not focus on relocating people inappropriately living in aged care facilities. 6.2.2 Cluster housing This model refers to a number of houses or units co-located and/or conjoined on a single site. There may be a central shared area or shared facilities such as recreational areas. The housing would generally be purpose-built but may vary in design and provide accommodation for people with a wide range of needs and abilities. A variation would be a mixed housing model where younger people with a disability reside in a set number of houses/units and receive support and other services on site. Other houses/units may be used or owned by the general public. Advantages Allows for a wide variation in the number of houses/units, configuration of the buildings, support arrangements and ownership. Has the potential to allow for staffing flexibility and efficiencies. Allows for housing and supports to be developed to accommodate people with varying levels of need. Enables the clustering of services in order to use resources more efficiently and economically. Suitable for people with high physical needs requiring high support and staffing hours to assist with mobilising and activities of daily living. Limitations May be regarded as resembling previous government-funded, institution-style accommodation, although quality and safety protocols could be built in and housing ownership incorporated into the model. Would generally be inappropriate in rural or remote settings. 6.2.3 Group homes Group homes are shared accommodation in small-scale, ordinary housing, generally with three to four residents. The houses may be existing or purpose-built according to the needs of the people likely to reside there. However, most younger people with a disability residing in or at risk of entry to residential aged care would require housing that provides appropriate access, use of equipment and intensive supports. The group home model is a common accommodation support model for people with a disability in Australia and has a range of significant benefits including increased community participation, a more individualised approach and increased choice and decision making. Advantages Preferred option in institutional reform processes across Australia and internationally. Achieves a balance between meeting the needs of the individual and cost-efficiency. Provides the capacity for independent-style living and choices but builds in access to appropriate specialist supports and on-call services as required. Allows for a range of approaches in service provision, capital and management, with partnerships between government and non-government providers. Would be particularly suitable for younger people with similar levels of need. Limitations High-cost approach, which may require a high level of funding to ensure viability. Reliant on a certain population within a location, therefore more appropriate for metropolitan areas. Potential for group homes to become a mini-institution where people with similar needs are living together and all their support needs are provided by the same service. Due to rising land and construction costs and a lack of available land in Queensland, housing may be limited to newly developed suburbs that are not readily accessible, and lack a range of public amenities and government services. Living in a group home can be equally as isolating for the younger person with a disability as living in an aged care facility. Residents do not always have a choice about who they live with, however, processes to encourage choice and compatibility can be developed. 6.2.4 Independent living or living with family This model involves an individual with a disability controlling how his or her needs are met. This may include family support in the family home, or another independent accommodation setting. Advantages People can choose their individual accommodation option to live alone in the community, with family or to resume the role of spouse or parent in their families. May be suitable in rural or remote areas as it is not dependent on identifying other people with a disability to share accommodation options. Limitations More expensive approach, particularly for people with high and complex needs, as the model does not have same cost-efficiencies as larger service models. If an individual lives independently and does not have significant informal and family supports, there is an increased risk of isolation. May increase the burden on nearby family and carers, particularly where the needs of the person with a disability are underestimated. 7 Strategies to manage the demand for permanent entry to aged care facilities Strategies suggested to manage the demand for permanent entry to aged care facilities during consultation with younger people with a disability, their families and staff in aged care facilities included: increasing access and availability of residential respite in age-appropriate facilities for younger people that is in close proximity to family increasing support services to informal family carers to lower family stress increasing provision of age-appropriate accommodation and support for younger people with high needs in close proximity to families providing continued access to residential respite in aged care facilities in lieu of other more age- appropriate respite being available. (However, providing ongoing access to residential respite in an aged care facility also has the impact of increasing the younger person‟s familiarity with that environment. This may further encourage the younger person and their relative to accept a place in an aged care facility, if offered). 8 Younger people with a disability in residential aged care initiative In response to the growing awareness about the need to provide younger people with a disability with more appropriate living environments, the Council of Australian Governments on 10 February 2006 announced a joint initiative between the Commonwealth, State and Territory Governments to reduce the number of younger people with a disability living in aged care facilities. The Queensland Government and the Commonwealth Government each committed $23.9 million in funding, a total of $47.8 million over five years for this important initiative. Disability Services Queensland is managing this initiative in Queensland. Participation in the program is entirely voluntary. Over the five years of the initiative Disability Services Queensland will focus on achieving the following outcomes: Assisting younger people with a disability in aged care facilities to move to more appropriate accommodation where available and if this is what the person chooses. Diverting younger people with a disability who are at risk of admission to aged care facilities to more appropriate accommodation. Improving the delivery of disability support services to younger people with a disability who choose to remain in aged care facilities or for whom it remains the only available suitable option. A range of support models, which may include accommodation, health care and disability support, is being developed to meet the needs of people with a disability who are eligible for assistance under the initiative. Disability Services Queensland will work closely with younger people with a disability, their families, non- government service providers and other interest groups as the initiative progresses. Contacts Disability Services Queensland www.disability.qld.gov.au Freecall: 1800 177 120* TTY: 1800 010 222* Fax: 3896 3467Email: email@example.com*Calls from mobile phones are charged at applicable rates. The National Relay Service (NRS) is available on freecall 1800 555 677.The Translating and Interpreting Service is available by calling 13 14 50. Ask to be connected to the Disability Information Service. This document is available in alternative formats (including large print) on request.
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