Mid-Term Review, Younger People in Residential Aged Care (YPIRAC) Program 

• Appendix A Literature review
• Appendix B References

Appendix A Literature review

Historically, the issue of accommodating young people with disability in residential aged care has been an issue of concern for young people with disability and for families, carers and advocates as an area of unmet need.

It is widely acknowledged in the disability sector that aged care facilities are not designed or adequately resourced to facilitate the active involvements of younger residents with high clinical needs in everyday  activities or support their continues participation in the life of the community.  This may be largely attributed to the design purpose being to provide accommodation, personal and nursing care to frail older people at the end stage of their life (Winkler et al: 2006, p 100). Winkler et al (2006, p 101) report that younger people are admitted to such facilities typically because more appropriate accommodation is unavailable.

The ageing of the population generally, associated with disability, places additional pressure upon residential aged care services, but also upon ageing parents and carers of younger people with disability, anxious to ensure their children or partners can have access to appropriate accommodation types and support services.

A.1.1 Younger people accommodated in aged care services

The Australian Institute of Health and Welfare (2008, p 42) reported that, nationally, in 2006-07, there were 6,613 residents aged less than 65 years accommodated in aged care services, comprising 4% of all residents.  This pattern was similar across the States and Territories, with the exception of the Northern Territory, where the proportion of residents aged less than 65 years was considerably higher, at 13%.  The different age profile in the Northern Territory is to be expected, given the proportion of Aboriginal and Torres Strait Islander peoples living in that Territory.  Aged care planning for Aboriginal and Torres Strait Islander peoples includes those 50 years and over in light of their poorer health status. In remote areas, 9% of residents were aged under 65 years, while in very remote areas 19% of residents were aged under 65 years.  In other regions, the representation of this age group was near the national average of 4% (AIHW 2008, p 42).

According to Morkham (2004) young people in residential care are there because of a range of acquired disabilities, from catastrophic accidents or unpredictable health events, or degenerative neurological diseases, such as muscular dystrophy.  Further, the advances made in medical technologies and improved health care services allow people to survive injuries and unpredictable health events, as well increase the life span of people with degenerative neurological conditions.  Subsequently, the number of people with acquired disabilities in Australia is growing (Morkham 2004: 9).

Research on accommodation needs and preferences of young people

A confined review of literature on this topic revealed that only a small amount of documentation on this population group exists; in particular there is little to no information on their specific care needs or their participation in leisure or vocational activities.  This view is supported by Winkler, Farnworth and Sloan (2006: 100) who argue that:

This section briefly outlines studies that have been undertaken in this area and notes their main findings.

Surveys of nursing homes

Winkler et al (2006, p 101) cite two Australian studies which have surveyed nursing homes to describe the characteristics of younger residents.  In 1995, Moylan, Dey and McAlpine conducted a national survey to provide an overview of people under 60 in nursing homes.  They had a response rate of 68% (626 participants out of the 1515 residents under 60 in nursing homes) and collected information on age, sex, primary disability type, other significant disability types, cultural background, previous place of residence, Residential Classification Instrument score and additional support services received.  The study found that the majority of residents under 60 had acquired brain injury as their primary disability type and that very few younger people were relocated from an aged care facility to another accommodation option.

The second study was conducted by Cameron, Pirozzo and Tooth (cited in Winkler et al 2006, p 101) and focused specifically on people with acquired brain injury under 65 years residing in nursing homes. The study described the characteristics of these residents and concluded that, while many facilities were attempting to meet the needs of this group, they are simultaneously faced with limited resources, poor funding and inadequate training for this specialist area of care.

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Young people living in aged care facilities in Victoria

Winkler et al’s 2006 study into people living in aged care facilities in Victoria found that over one third of younger people in aged care were effectively excluded from life in the community and most younger residents are socially isolated and have limited opportunities for recreation.  Their study concluded that placement of younger people in aged care facilities is inappropriate and alternative care models are required.  Care models need to address the many complex care and clinical needs of this group such as challenging behaviour, pressure sore managements and PEG tube feeding. Furthermore, services need to be properly and adequately resourced to foster social contact and participation in recreation and community life (Winkler et al 2006, p 106).

In 2007, Winkler, Sloane and Calloway documented the needs and preferences of younger people with disability in Victoria, determining that the majority of younger residents sampled were ‘effectively excluded from participating in community life’ and had limited opportunity to make choices such as the time they go to bed or the content of meals.  Sixty eight people of the 105 in the sample and their support networks indicated that they would like to explore alternate accommodation and support options, while 27 indicated they would prefer to stay resident in the current RAC facility.  The preferences of ten people were unknown.  Of those interested in moving, nine expressed a preference for a private residence; 56 would like to live in shared accommodation and three had a preference for other options.

Young people living in aged care facilities in Queensland

The Queensland Government produced a summary report on younger people with a disability based on a collaborative project between Disability Services Queensland and Queensland Health; this project investigated the needs of younger people with a disability living in aged care facilities.  The report profiled 106 younger people living in residential aged care facilities through a review of their care plan, which was supplied by the aged care facility and the researchers also met with the younger persons, their significant other and facility staff. The key findings include:

• 74 people had high care needs and 32 had low care needs
• the majority had an acquired disability (68 people or 64.2%)
• the most common disability was acquired brain injury (37 people or 34.9%), followed by intellectual disability (18 people or 17%), cerebral palsy (13 people or 12.3 %) and Huntington’s disease (9 people or 8.5%) (Disability Services Queensland and Queensland Health 2006: 8).

The project also involved stakeholder consultation with people living in aged care facilities, their families, aged care facility staff, Aged Care Assessment Teams (ACATs) and Disability Services Queensland regional directors.  The consultations revealed that younger people entered such facilities generally due to a lack of alternative accommodation options in their community, following increasing or changing needs and the inability for their current care arrangements to continue (Disability Services Queensland and Queensland Health 2006, p 11).

Identified benefits for younger people 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 related mainly to their social needs not being met due to experiencing boredom and not accessing relevant community activities or appropriate therapy services to meet their needs (Disability Services Queensland and Queensland Health 2006, p 11).  

YPINH National Alliance Conference outcomes

The Young People in Nursing Homes (YPINH) National Alliance approached the Australian Government for funding for a Conference which was approved.  The Conference was considered by the Australian Government and the YPINH National Alliance to be an opportunity to review progress of the COAG Younger People in Residential Aged Care initiative, in terms of what had been undertaken to date and actions which could help the Program in future to successfully deliver on its key objectives.  As a result of the Conference, a number of recommendations for the future of the Program were identified:

• Extending the initiative – it was agreed that the initiative urgently needed to deliver more outcomes, more rapidly to be able to meet its five year targets.  A number of cases for increased funding were made to enable improved responses and faster outcomes for consumers.
• Funding – calls were made for an end to the ‘rationing’ approach under the initiative that has seen funding delivered according to the numbers of consumers requiring a response rather than according to need.
• Diversion from aged care – there was strong support to increase the programs focus on preventing young people entering residential aged care through innovative programs that deliver timely and effective responses.
• Declaration of an initial target of under 50s – while the YPIRAC initiative was theoretically available to all younger people under the age of 65 years, the program’s time and resource limits have resulted in the initial target group (<50) being the only group considered for participation.  While the reasons behind inclusion of an age related initial target group are unknown, they may have included:
  • perceptions that this cohort’s much smaller numbers increased the chances of success
  • mistaken assumptions that people over 50 were likely to enter or remain in aged care anyway
  • prejudicial thinking that locates individuals over 50 as ‘less in need’ of disability supports and services because they are approaching the ‘aged’ interface
  • financial and budgetary constraints regarding available funding for the initiative.

  Whatever the reason, the net result has been the exclusion of the over 50s cohort from the YPIRAC Program.  In some States, eligibility has been so tightly defined that individuals must be under the age of 50 years as at 1 July 2006 to participate.

  Inclusion of an initial under 50s target group has thus served to reinvigorate one of the main areas of concern in the YPINH issue: a predominant service delivery methodology that provides services according to age not need.

 
• An insurance-based approach to the future funding of disability services – it was thought that this approach would deliver the lifetime support that this group needs and remove the need to ration services.
• Rehabilitation – there were unanimous calls across the stakeholder spectrum to include rehabilitation services in the initiative.  There was also strong support for rehabilitation to be viewed as a ‘lifelong approach’ to skill development for recovery from injury and maintenance of health and wellbeing in the YPINH (young people in nursing homes) group.
• Systemic reform with improved collaboration and integration – there were calls for improved collaboration between government departments in health, disability, housing and aged care, especially in the design and implementation of innovative solution that maintain YPINH in the community; and in the delivery of services.

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AIHW’s final report on the YPIRAC 2007-08 Minimum Data Set

The AIHW’s final report on the 2007-08 YPIRAC Minimum Data Set (MDS) summarised the characteristics of people who accepted services in 2006-07 and continued receipt the following year, as well as new clients in 2007-08. It also detailed the YPIRAC services received.  The report defined a YPIRAC service user as a person who has applied and been found eligible for the YPIRAC Program and has received one or more YPIRAC-specific services during the 2007-08 financial year period. These services include YPIRAC assessment and individual care planning, monitoring, alternative accommodation and support service package (AIHW 2009, p 2).

The final report on the 2007-08 MDS presented information on: the use of YPIRAC-specific services and support services; characteristics and service use of new and continuing service users; service use by the target population; and data processing and quality issues. These findings are reported throughout this mid-evaluation report.

Appendix B References

Australian Institute of Health and Welfare 2008. Residential aged care in Australia 2006–07: a statistical overview. Aged care statistics series 26. Cat. no. AGE 56. Canberra: AIHW.

Australian Institute of Health and Welfare. 2008a. Younger People with Disability in Residential Aged Care Program: Report on the 2006-07 Minimum Data Set. Canberra: AIHW. For YPIRAC Internal Use Only.

Australian Institute of Health and Welfare. 2009. Younger People with Disability in Residential Aged Care Program: Report on the 2007-09 Minimum Data Set. Canberra: AIHW. For YPIRAC Internal Use Only.

Disability Services Queensland. 2006. Summary report on younger people with a disability living in or at risk of entry to aged care facilities.

Foster, M, J Fleming and C Tilse. 2007. ‘Council of Australian Governments’ (COAG) Initiative for Young People with Disability in Residential Aged Care: What are the issues for Acquired Brain Injury?’. Brain Impairment Vol 8, no3; 312-322.

Morkham, B. 2004. ‘Moving young people out of nursing homes’. The Australian Health Consumer. Number Three 2004-2005. Senate Community Affairs Committee. 2005.  ‘Chapter Four – Young People in residential aged care facilities’ in Quality and Equity in Aged Care. Canberra.

Senate Community Affairs Committee. 2005. ‘Chapter Four – Young people in residential aged care facilites’ in Quality and Equity in Aged Care. Canberra.

Winkler D, L Farnworth and S Sloan. 2006.  ‘People living in aged care facilities in Victoria’. Australian Health Review Vol 30, no1; 100-108.

Winkler, D, L Callaway and S Sloan. 2007. Younger people in residential aged care: Support needs, preferences and future directions. Melbourne: Summer Foundation Ltd.

YPINH National Alliance.  2008.  ‘Preliminary Report’. Shaping the Future Today: National Conference, 19 and 20 August 2008. Melbourne.