Centre-based respite care delivered by Disability ACT Feasibility by rMQDu4g

VIEWS: 9 PAGES: 44

									Centre-based respite care
            delivered by
           Disability ACT
    Feasibility report: Volume 1
                     November 2011




                                     1
C o n t e n ts

     Executive summary............................................................................................................ 5

     1          Introduction ........................................................................................................... 7
                1.1        Respite care in the ACT .............................................................................. 7
                1.2        This report ................................................................................................... 8
                1.3        Report structure........................................................................................... 8

     2          Need for respite care ............................................................................................. 9
                2.1        Introduction................................................................................................. 9
                2.2        Demographics of the future need for respite............................................. 10
                2.3        Carer needs ............................................................................................... 12
                2.4        People with disability................................................................................ 14
                2.5        Disability compatibility ............................................................................ 17

     3          Current ACT respite services ............................................................................. 21
                3.1        Introduction............................................................................................... 21
                3.2        ACT respite environment.......................................................................... 21
                3.3        Housing types ........................................................................................... 23

     4          Recent developments in Australia...................................................................... 25
                4.1        Introduction............................................................................................... 25
                4.2        National Disability Agreement ................................................................. 25
                4.3        National Disability Strategy...................................................................... 25
                4.4        National Disability Insurance Scheme ...................................................... 26

     5          Analysis of house design options ........................................................................ 29
                5.1        Introduction............................................................................................... 30
                5.2        Assessment of existing houses .................................................................. 30
                5.3        Analysis of house design options.............................................................. 32

     6          Additional features of respite care ..................................................................... 39
                6.1        Introduction............................................................................................... 39
                6.2        Respite care support .................................................................................. 39

     7          Future respite care service models..................................................................... 41
                7.1        Introduction............................................................................................... 41
                7.2        Alternative futures .................................................................................... 41
                7.3        Implementing a respite care model ........................................................... 43



                                                                                                                                               3
E x e c u t i ve s u m m a r y

     The purpose of this report is to inform Australian Capital Territory (ACT) Government
     decision making on the infrastructure requirements and options to improve the provision of
     government-provided centre-based respite care services for people with disability. Disability
     ACT currently offers such services, predominantly for people with intellectual disability,
     through four government-operated respite houses.

Challenges
     There are concerns that demand exceeds supply for the respite care services provided by
     Disability ACT. Pressure on the limited resources will only increase over time as the ACT
     population grows. The existing respite houses are ageing, and will need work in the next 10–
     15 years if they are to meet National Standards for Disability Services. If respite fails to meet
     the needs of carers, and carers are unable to cope, clients will require accommodation support
     options at approximately five times the cost per client.
     In addition, the existing respite houses have been developed under a provider-based model,
     which emphasises the capacity and management structures of the provider. Several recent
     reports identify the need for a client-centric service model that focuses on the needs of the
     carers and people with disability. In particular, a need for short-notice respite care has been
     strongly identified. At present, carers are required to make bookings for respite care in blocks
     significantly ahead of time. However, respite care is often needed urgently because carers
     need to meet their own wellbeing requirements. A more flexible approach will improve
     respite care, carer wellbeing and the support relationship.
     Finally, the proposed National Disability Insurance Scheme (NDIS) could have a major impact
     on ACT respite care by increasing the amount of care provided by community providers.

The four options
     This report examines the options for future government centre-based respite care in the ACT
     to address these challenges:
     • Option 1 (do nothing) defers capital investment in respite housing beyond a 10-year
         timeframe.
         –   Benefits: defers investment; minimises financial risks surrounding NDIS
             implementation.
         –   Impacts: a likely reduction in service levels as a result of population growth; higher
             risk of noncompliance with the Disability Discrimination Act 1992 as a result of poor
             facilities; limited ability to support a change to a client-centric model as
             recommended by recent reports and carers; potential transfer of financial liability to
             accommodation support services.
     •   Option 2 (renovate) makes a limited capital investment to marginally improve the
         houses and reduce the risk of noncompliance with the Disability Discrimination Act for
         10 years.
         –   Benefits: limits immediate investment; minimises financial risks of NDIS implementation.
         –   Impacts: disruption of services during the construction period unless alternative
             accommodation is used (to mitigate this disruption, at least one new house may be
             required so that the services can be rotated).
     •   Option 3 (build new on existing site) makes a long-term capital investment to
         substantially improve the amenity for the next 40 years.
         –  Benefits: an additional 456 bed-nights per year per house (1824 bed-nights for the
            four houses); capacity for an additional 2000 hours of day-stay during school hours if
            the Kese and Teen houses are constructed; support for a client-centric model.
                                                                                                     5
        –   Impacts: the capital investment needed; demolition of the existing houses and the
            associated residual capital value; disruption of services during the construction period
            unless alternative accommodation is used; some spatial limitations that could inhibit
            provision of support (although, if the NDIS is implemented, other providers might
            provide additional capacity).
    •   Option 4 (build new on new site) makes a long-term capital investment to substantially
        improve the amenity for the next 40 years.
        –  Benefits: an additional 456 bed-nights per year per house (1824 bed-nights for the
           four houses); capacity for an additional 2000 hours of day-stay if the Kese and Teen
           houses are constructed; support for a client-centric model; return of existing
           properties to Housing ACT for reuse; cheapest option over 10 years.
        –  Impacts: the capital investment needed.

Recommendations
    Recommendation 1: Option 4 be implemented for each house, at a total cost of
    $6.3 million. This option represents the best value for money over 10 years, providing the
    greatest capacity for quantity, quality and flexibility to meet the changing needs of the ACT
    population. This recommendation also provides an immediate response to the need for ACT
    Government–operated respite properties to meet the National Standards for Disability
    Services. Option 4 is recommended because:
    • it provides an additional 1824 bed-nights each year without increasing operational budget
    •   it provides greater capacity for the care of clients with severe and complex disability
    •   it provides an additional capacity of 2000 hours each year of respite during school hours
    •   after 10 years, it is the cheapest option for providing centre-based respite care.

    Recommendation 2: Implementation of option 4 be phased in. The preferred approach is
    to implement recommendation 1 in Budget 2012–13. However, given the uncertainty over the
    future structure of the disability service system with the introduction of the NDIS, an
    alternative approach is a two-phased implementation of option 4: phase 1 — a 2012–13
    budget allocation of $3.1 million to construct the Kese and Teen houses; and phase 2 — a
    2013–14 budget allocation of $3.2 million to construct the adult houses.
    Two further recommendations are made to enable the houses to most effectively support client
    and carer needs and realise peak capacity. The key risks in achieving an additional 1824 bed-
    nights, providing short-notice care and still ensuring a quality respite experience are client
    compatibility and responsive management. Both will be mitigated with effective client
    management and self-booking systems.
    Recommendation 3: The client management system be extended to include a carer
    module. Client compatibility will be improved through the client management system that is
    currently under development. The client management system should be extended to provide a
    carer module that enables carer requirements to be captured. This would include the carers’
    needs with regard to lifestyle, age, disability (if applicable), health, work, other relationships
    and future intentions. This will inform management of the long-term requirements of carers
    and support a change from a service provider-centric model to a carer-centric model.
    Recommendation 4: A self-booking respite system be implemented. A self-booking
    system should be implemented with a record that links all unmet need to the carer and client
    profiles. This provides an immediate carer-centric response to a need for optimal use of the
    facilities under options 3 and 4. It also records the level of unmet need to assist management
    in developing future responses.
    Implementation of these recommendations will allow the ACT Government to make substantial
    progress towards a client-centric respite model and meeting the needs of ACT carers.

                                                                                                     6
1        Introduction

         The Australian Bureau of Statistics estimates that around one in five people in Australia have
         one or more disabilities.1 Carers play a significant role in supporting people with disability.
         In 2009, there were 2.6 million carers providing support to Australians with disability.2
         Within the Australian Capital Territory (ACT), there are an estimated 34 900 carers who
         provide ongoing support for people with a wide range of disability and aged people.
         Nationally, 55% of primary carers spend more than 20 hours per week in support, and 37%
         spend more than 40 hours per week;3 71% of primary carers are female.
         The experiences of these carers depend on their individual circumstances and the needs of the
         person they support. However, for most carers, the support relationship adversely affects
         many aspects of life, including health and wellbeing, relationships with other family
         members and friends, and work (workforce participation is 39% for primary carers and 68%
         for non-carers3). The impact on carers’ lives is often significant. The Disability Care and
         Support inquiry report released by the Productivity Commission on 10 August 2011 found
         that ‘carers have amongst the lowest level of wellbeing of any group of Australians.’4
         Therefore, respite from support duties is often required to preserve carers’ wellbeing and
         enable them to continue the support relationship.

1.1      Respite care in the ACT
         The aim of the ACT Government’s respite care services for people with disability is to
         provide a short-term break for carers of people with disability (primarily intellectual
         disability). The respite is designed to support and maintain the support relationship, while
         providing a positive experience for the person with disability. The ACT Government operates
         four centre-based respite homes and funds community agencies to provide daytime (day-stay)
         and overnight (bed-night) care.
         The four existing ACT government facilities are:
         • child respite — one house is provided for children between the ages of 5 and 12 (Kese
            house at Kaleen)
         •   teen respite — one house is provided for young people between the ages of 13 and 18
             (Teen house at Narrabundah)
         •   adult respite — two houses are provided for adults between the ages of 18 and 64
             (Elouera at Charnwood, and a house at Hughes).

         There are three principal stakeholders in respite care: the carer, the client (the person with
         disability), and the ACT Government. All stakeholders share the same aspiration for high-
         quality respite care. The carer seeks respite care that is of sufficient quantity, of good quality
         and timely. The client seeks a positive experience from respite care that is in part provided by
         the house attributes but also by the disability support officers and interaction with other
         service users. The ACT Government and community seek to meet all these needs in a cost-
         effective and sustainable way.

1
  Australian Bureau of Statistics (2004). Disability, Ageing and Carers, Australia: Summary of Findings, cat. no.
4430.0, ABS, Canberra, p. 19.
2
  Contains the following groups: sensory, intellectual, physical and psychological. Data are not provided by
disability group in the Survey of Disability, Ageing and Carers. These data also include aged people with disability.
Australian Bureau of Statistics (2004), Disability, Ageing and Carers, Australia: Summary of Findings, cat. no.
4430.0, ABS, Canberra, p. 20.
3
  www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features12003?OpenDocument
4
  www.pc.gov.au/__data/assets/pdf_file/0014/111272/disability-support-overview-booklet.pdf (p. 6)
                                                                                                                    7
1.2   This report
      This report was commissioned to examine the options for future centre-based respite care in
      the ACT. Research for the report examined the needs of the carer and the client, including
      projected future needs. It then looked at existing ACT Government services and
      contemporary practice around Australia and overseas. The key issues and drivers were
      identified, and alternative futures were developed using iterative forecasting methodologies
      (see Appendix C). The potential futures correspond to four centre-based respite house
      options:
      • option 1 — do nothing
      •   option 2 — renovate the existing houses
      •   option 3 — rebuild on existing sites
      •   option 4 — build new on new sites.

      An assessment of the cost, issues and risks was made for each option, with a view to
      improving the quantity, quality and timeliness of ACT Government–provided centre-based
      respite care. Also assessed was how the four options met the needs of people with disability
      and supported the maximum compatibility between disability type, severity and complexity.
      Compatibility of clients is a key issue in ensuring that respite services operate at peak
      capacity.
      The report draws on existing research and published reports. The author also conducted four
      workshops with carers and people with disability to investigate the issues surrounding respite
      care. Additional reports were also commissioned (Appendixes F and G). These included a
      review of existing compliance with the Disability Discrimination Act 1992 and the Building
      Code of Australia, potential housing options, and the associated capital and operational cost
      estimates of each option.

1.3   Report structure
      Volume 1
      •   Section 1 — Introduction
      •   Section 2 — Need for respite care (p. 10) defines the enduring respite care needs of
          carers and people with disability over the 40-year functional life of the houses
      •   Section 3 — Current ACT respite services (p. 21) summarises the existing provision of
          respite services
      •   Section 4 — Recent developments in Australia (p. 24) examines changes that will affect
          the respite care environment, including the National Disability Insurance Scheme
      •   Section 5 — Analysis of house design options (p. 27) summarises the options and costs
      •   Section 6 — Additional features of respite care (p. 37) examines client management and
          self-booking systems
      •   Section 7 — Future respite care service models (p. 39) examines other aspects of the care
          and respite experience to develop a housing-related respite care model.
      Volumes 2 and 3
      •   Appendixes — These include figures and tables, national and international research,
          methodology of the report, bibliography and an author profile (Volume 2); and reviews
          of existing respite houses and proposed developments, and financial reviews of the
          options (Volume 3).


                                                                                                     8
2     Need for respite care

      Key points
      There is a gap between carers and non-carers with regard to wellbeing, work and relationships.
      Carers spend a significant amount of time each week in their support role: 48% of carers spend
      more than 40 hours in their support role, and 30% spend between 21 and 40 hours. Respite is
      important to improve their wellbeing and enable them to continue the support relationship.
      Centre-based respite care has two client groups with different needs: the person with disability
      (client) and the carer. The client needs a positive experience while in respite, which — along
      with a number of other factors — depends on the amenity of the house and the skills of house
      staff. Carers need reliable and responsive respite care, which depends on there being an
      appropriate quantity, quality and timeliness of respite care.
      Recent reports and report workshops conclude that existing respite care arrangements in the
      ACT are insufficient, both in terms of the amount of care (quantitative need) and the care
      facilities and management (qualitative needs).
      Assessing the quantitative need for respite establishes the baseline quantity of bed-nights and
      day-stay hours that need to be provided by the houses. However, this assessment is difficult
      because data are fragmented, causing a high degree of uncertainty. Estimates can be based on
      existing carer numbers, population growth projections, and an analysis of the need for care
      depending on disability type and severity. Carer factors that affect the need for respite include
      age, potentially a carer’s own disability, health, family and work circumstances. However, there
      are no causal data on the amount of respite that is needed to close the wellbeing gap between
      carers and non-carers.
      The ACT population is increasing, indicating that there will be more carers needing respite.
      Since disability increases with age, parental carers are also faced with their own self-care issues;
      these can either increase the need for respite or lower the need for respite and place demands on
      other forms of accommodation support. When there is a transition to other voluntary carers,
      such as siblings, there may be different respite needs.
      In examining qualitative needs, carers and clients both expressed a desire for a change towards
      client-focused centre-based respite care and away from the current provider-based service.
      Timeliness of respite was a particular concern. Current management arrangements require
      carers to book respite care in blocks of time well in advance. Short-notice access to respite was
      considered very important. The approach taken in house design to address this was to build
      flexibility into each of the living spaces to enable reconfiguration.
      Other qualitative house attributes include lifting equipment and the availability of good visual
      supervision. Since clients have different needs, to minimise the ‘institutional feel’ where there is
      more than one functional space (such as bathrooms and bedrooms), some spaces are modified to
      account for different levels of support needs. The house designs also support compatibility
      through noise attenuation between bedrooms, two living areas and, if there are high and
      complex needs, two large bedrooms that provide for a flexible response.

2.1   Introduction
      The demand for respite housing is the aggregate of individual care needs. Determination of
      the aggregate and ongoing need for respite care is fundamental to understanding the attributes
      required of a respite house. These attributes include both quantitative and qualitative aspects.
      The quantitative aspects look at the need for respite to determine the numbers of bedrooms
      and living spaces needed. The need for respite care is driven by the personal circumstances of
      each carer and client. These circumstances, or the carer, are likely to change over time. It is

                                                                                                          9
        important to assess the existing levels of both unmet need (people seeking but not receiving
        respite) and unidentified need (people not asking for respite — for example, because they
        perceive that it will not be met).
        The qualitative aspect of respite housing is more difficult to determine because there is a
        large spectrum of need, and sometimes a particular housing attribute may not be useful to
        others using the same environment. This can present risks associated with compliance with
        the Disability Discrimination Act 1992. In the absence of specific information, qualitative
        demand is focused on the greatest need.
        This section will assist in determining whether the current houses meet carer and client needs
        and what attributes are required in a respite house. (See also Appendix C, Section C2.)

2.2     Demographics of the future need for respite
        Trends in the Australian population are important to understanding the potential demand for
        respite care.

        2.2.1    Population

        The projected ACT population profile can be used as a baseline to assess the future need for
        respite care.5 According to the Australian Bureau of Statistics (ABS), the ACT population
        should increase to between 112% (approximately 380 000) and 202% (approximately
        680 000) of its current level over the 40-year life of the respite houses (see Appendix A,
        Figure A.1).
        However, the ABS figures are not a prediction, but rather a range of estimates. Needs for
        centre-based respite care could be substantially different, depending on the population
        estimate. For the high population estimate, and assuming social trends remain as they are
        today, there is likely to be a doubling of the respite need. Conversely, for the lower estimate,
        after a peak around 2030, a slight population decline could result in a lessening of demand.
        The growth of Canberra’s population is influenced by three drivers: fertility rates, life
        expectancy and immigration. Immigration is a combination of intranational and international
        immigration. Intranational immigration from other states is dependent on the work and
        lifestyle opportunities in Canberra and is not likely to change the disability rate within the
        population. International immigration is determined by the Australian Government. The
        Migration Act 1958 is exempt from the Disability Discrimination Act; thus, if Canberra’s
        population increase is substantially due to international immigration, it is likely that the
        proportion of people with disability within the general population will decline over time.

        2.2.2    Population profile

        The Australian population is ageing (see Appendix A, Figure A.2), and this will change the
        respite care environment.
        Disability rates increase steadily with age, with almost 20% of the population having
        disability at age 50, 35% at age 60, 45% at age 70, and 65% at age 80 (see Appendix A,
        Figure A.3). As carers age, they may become less able to support the person with disability.6
        Parental carers are generally 20–30 years older than the person with disability. As these
        carers age to 55–70 years of age and beyond, there are significant increases in carer disability



5
  This is in the absence of a future carer profile (Love has its Limits: www.carersact.asn.au/wp-
content/uploads/2011/02/Respite_Care_Services_ACT.pdf).
6
  Giles LC, Cameron ID and Crotty M (2003). Disability in older Australians: projections for 2006–2031. Medical
Journal of Australia 179:130–133.
                                                                                                                  10
         rates. This is likely to mean additional need for respite before the carer is eventually unable
         to provide care.7
         Alternatively, the responsibility for voluntary care might pass to a sibling of the person with
         disability or other informal carer, and this could change the appropriate level of respite care.
         These carers, depending on their lifestyle choices and circumstances, might be less able to
         provide a similar level of support,8 which could increase the demand for centre-based and
         other respite care in terms of bed-nights and day-stay activities. Alternatively, it might reduce
         demand by moving people with disability into other (more expensive) forms of
         accommodation support. Given the age of most carers, there is likely to be a significant shift
         in generational care or to other accommodation support in the next 15 years.
         The absence of a future respite care profile makes calculation of the future respite need
         difficult, requiring a selective interpretation of how needs will change over time. Flexibility
         might need to be built into the house designs to accommodate changing needs. Analysis of
         the client disability groups and ages using the four existing centre-based respite houses (see
         Appendix A, Table A.1) shows that, if disability rates remain at a similar proportion to
         existing levels, the most significant demand for respite care will occur in the adult
         population.
         Another consequence of an ageing population is that disability services are likely to compete
         for funding with aged care, social security, health and other services needed for the new
         population profile. Minimising operating costs for respite housing will therefore be important.

         2.2.3    Social trends

         There are also a number of demographic social needs and trends that have not currently been
         addressed in centre-based respite care:
         • Non-English speaking background — People from non-English speaking backgrounds
            have a disproportionately low use of respite care.9 No conclusion was drawn on the
            implications of this issue; however, improved communication of care respite
            opportunities might be an aspect warranting further development.
         •   Aboriginal and Torres Strait Islanders — Indigenous people have significantly higher
             rates of profound or severe core activity limitation.10 The demand for services is therefore
             likely to be proportionally higher in the Aboriginal population. However, the total
             numbers are likely to be less than for other groups. Provision of service for this
             community requires further development. The house options 3 and 4 have bedroom types
             that would cater for the physical needs of this group.
         •   Holiday care — It might be appropriate to establish reciprocal arrangements for respite
             care with other Australian states and territories.11,12 This was stated as a requirement at

7
  ‘Carers were, on average, older than non-carers. In 2003 the median age of the non-carer population aged 15 years
and over was 40 years of age while the median age of the carer population aged 15 years and over was 48 years. The
median age of the primary carer population was 52 years. Over one third (35%) of all carers report that they
themselves had disability compared with just over one fifth (22%) of all people aged over 15 years. Over three fifths
(61%) of older carers (aged 65 years and over) said that they had disability compared with 51% of older people who
were not carers. One-fifth of younger carers (aged 15–34 years) had disability compared with 8% of younger people
who were not carers.’ Australian Bureau of Statistics, cat. no. 4448, pp. 7–8.
8
  The cost of a house in the 1960s was around twice an average male annual salary. Today, a house is approximately
eight times an average salary. This means that a spouse who is a principal carer needs a second job in 2010,
reducing the time available to support and placing a greater demand on respite services.
9
  The proportion of non-English speaking people with disabilities is 0.5 per 1000 people compared with 1.8 per 1000
for English speaking people. Productivity Commission (2011). Report on Government Services 2011,
Commonwealth of Australia, p. 14.
10
   Productivity Commission (2011). Report on Government Services 2011, Commonwealth of Australia, p. 14.
11
   Priority area 1: Inclusive and accessible communities — the physical environment including public transport,
parks, buildings and housing, communication technologies; social, sporting, recreational and cultural life, from
                                                                                                                  11
             report workshops. In this way, both the carer and the person with disability could take a
             holiday, with the person with disability in the same location as the carer but in a local
             respite centre.

        Medical advances have not been considered in examining future respite demand. Research
        might target a health condition (eg musculoskeletal disorders) that would mitigate the need
        for respite care because the person with disability is able to participate more fully in
        mainstream activities.13 Recent advances in medical testing have diagnosed various
        disabilities at an earlier stage. Testing during pregnancy might lead to early termination if
        abnormalities are recorded. This could lead to fewer people being born with some
        disabilities. Conversely, medical advances allow for higher survival rates of people with
        severe disability, placing greater demands on respite. The absence of data inhibits future
        demand predictions; however, the risk is assessed as not significantly altering the demand for
        services in the near term.

2.3     Carer needs
        In this report, carer needs have been examined through an integration of ACT and national
        quantitative data with qualitative information drawn from reports, surveys and workshops.
        Several recent reports identify the need for change towards a client-centric service model,
        which would focus on the needs of carers and people with disability. In December 2010, the
        ACT Standing Committee on Health, Community and Social Services released its report
        Love has its Limits — Respite Care Services in the ACT,14 which examined the limitations
        and needs for respite care in the ACT. The report found that carers believe that there are few
        respite choices available to them15 and that the timing when respite is available is often
        inappropriate and inflexible.16

        2.3.1    Carer wellbeing

        A lack of respite has a significant effect on the carer:
        • Self — Caring often has adverse consequences. Nationally, just 26% of primary carers’
            experience was positive with no negative effects. A significant number of carers
            experience a range of negative effects, including weariness (34%), changed wellbeing
            (30%), sleep interruptions (15%) and stress-related illnesses (10%).17 Both the carer and
            the support relationship are put under stress by these effects. However, anecdotal
            information indicates that carers continue support at the expense of their own wellbeing
            because of concern over the treatment of the person with disability by others.
            If these national figures of negative effects are representative of the ACT, the amount of
            respite care needs to be increased. During the report workshops, the view was also
            expressed by several participants that carers experiencing sleep deprivation or
            significantly heightened stress need immediate respite, rather than the current approach
            of having to book respite in advance.

Australian Government Department of Families, Housing, Community Services and Indigenous Affairs (2011).
National Disability Strategy. www.facs.gov.au/sa/disability/progserv/govtint/nds_2010_2020/Pages/default.aspx
12
   Australian Government Department of Families, Housing, Community Services and Indigenous Affairs (2011).
National Disability Strategy. www.fahcsia.gov.au/sa/disability/progserv/govtint/Pages/nds.aspx
13
   Australian Bureau of Statistics (2004). Disability, Ageing and Carers, Australia: Summary of Findings, cat. no.
4430.0, ABS, Canberra.
14
   Standing Committee on Health, Community and Social Services (2010). Love has its Limits — Respite Care
Services in the ACT. www.carersact.asn.au/wp-content/uploads/2011/02/Respite_Care_Services_ACT.pdf
15
   Standing Committee on Health, Community and Social Services (2010). Love has its Limits — Respite Care
Services in the ACT, para 3.17. www.carersact.asn.au/wp-content/uploads/2011/02/Respite_Care_Services_ACT.pdf
16
   Standing Committee on Health, Community and Social Services (2010). Love has its Limits — Respite Care
Services in the ACT, para 4.7. www.carersact.asn.au/wp-content/uploads/2011/02/Respite_Care_Services_ACT.pdf
17
   Australian Bureau of Statistics (2008). Population Projections, Australia 2006–2101, cat. no. 4448, p. 38.
                                                                                                               12
        •    Work — Carers of a child with disability are likely to have a workforce participation rate
             of 51%, and this is likely to drop to 42% for carers of people with profound or severe
             disability. In contrast, 61% of the general population with a child without disability are in
             the workforce.18 After-school care is available for primary school–aged children (5–
             12 years of age), but no school-based respite care for teens was identified.
        •    Family and friends — Although many carers (55%) do not experience a change in other
             relationships, 34% of primary carers experienced a strained relationship with other family
             members, and 18% experienced a strained relationship with the person with disability.19
             The report workshops indicated that, if respite care was available when required and a
             positive respite experience was achieved, this could maintain the support relationship
             more effectively.

        2.3.2    Carer numbers and hours of care

        The number of carers in the ACT is difficult to define from the available information. The
        Survey of Disability, Ageing and Carers was undertaken by the ABS in 2003 and 2009 (see
        Appendix A, Tables A.2 and A.3). The two self-assessment surveys show broadly consistent
        results.20 A large number of people self-assessed as having disability (34 200 people) or as a
        carer (34 900 people). However, these figures include all those identifying as a carer,
        including those caring for aged people as well as those with disability. The current estimate
        of the number of people with intellectual and developmental disability in the ACT below the
        age of 65 is 3176.21 Approximately 224 carers currently use ACT Government respite houses
        for people with disability.

        National data indicate that 48% of carers spend more than 40 hours per week in their support
        role, 21% spend 21–40 hours per week and 30% spend 20 hours or less.
        The nature of the disability influences the amount of care required. People with a
        psychological disability, in general, require more hours of care, and the ACT Government
        respite houses predominantly care for people with intellectual disability (see Appendix A,
        Tables A.1, A.4 and A.5).22 There are currently no care plans for disability types indicating
        the likely level of respite required. This will be important in determining the emphasis on
        housing attributes. In the absence of good data, a flexible approach to bedroom requirements
        in the respite homes is desirable.

        2.3.3    Care needs

        The critical question is ‘What is the appropriate level of respite to provide the care-giving
        relationship?’ At present, there is no measure for the amount of respite care that will increase
        carer wellbeing or successfully support an ongoing support relationship. Recent reports,
        including the Productivity Commission’s Disability Care and Support inquiry report,23 have
        indicated that the current level of respite might be inappropriate. The Love has its Limits
        report also provides a range of examples and evidence that the existing respite services are
        inflexible and difficult to access when needed, or unavailable. The Productivity Commission
18
   Standing Committee on Health, Community and Social Services (2010). Love has its Limits — Respite Care
Services in the ACT, para 3.42. www.carersact.asn.au/wp-content/uploads/2011/02/Respite_Care_Services_ACT.pdf
19
   Australian Bureau of Statistics (2008). Population Projections, Australia 2006–2101, cat. no. 4448, p. 39.
20
   Australian Bureau of Statistics (2004). Disability, Ageing and Carers, Australia: Summary of Findings, cat. no.
4430.0, ABS, Canberra.
21
   Australian Bureau of Statistics (2009). Disability, Ageing and Carers, Australia: Summary of Findings, cat. no.
4430.0, ABS, Canberra.
22
   66% of carers of people with a psychological disability spent more than 40 hours per week on care compared with
48% of carers of people with other disabilities. Australian Bureau of Statistics (2009). Disability, Ageing and
Carers, Australia: Summary of Findings, cat. no. 4430.0, ABS, Canberra, p. 33.
23
   www.pc.gov.au/projects/inquiry/disability-support/report (p. 10). The ACT information is consistent with Table 1
— Overcoming the problems of the present system.
                                                                                                                13
         also found that people with disability had too little control over their service provider and that
         empathy towards the carer from the provider is important.24

         At present, access to respite is focused on the severity of the disability (see Section 2.4.2) and
         is planned in advance. Families often require lead-in time to prepare for respite. Offers for
         additional respite care are sometimes refused because of the need to organise medication and
         other arrangements. However, anecdotal information from the report workshops indicated
         that a range of circumstances generate additional or short-term carer need for respite,
         including:
         • health needs of the carer that diminish the ability to support the person with disability
         •   health needs25 of the person with disability that increase the support role
         •   multiple siblings with less severe disability who have health issues
         •   short-term wellbeing issues, such as sleep deprivation caused by a period of intensive
             care or other emotional stressors.26

         A postal survey was undertaken of 106 carers in Australia who accessed care, including in-
         home care, day programs and residential respite. The mean duration of respite care was
         58 hours. The key conclusion of the survey was that respite care opportunities needed to be
         flexible and varied, and that higher use of a two-day respite care model was important.27

         The ACT Government targets an occupancy rate of 80% to provide an allowance for
         compatibility and a shutdown over Christmas. Use of the remaining 20% for flexible respite
         options could potentially provide carers with short-term (two-day) relief at short notice,
         helping carers to manage emergencies such as sleep deprivation or ill health. However, this
         would depend on compatibility.

2.4      People with disability
         A range of aspects of disability need to be taken into account in examining the needs for care,
         including disability type, severity and complexity.

         2.4.1    Disability type

         The type of disability of people seeking to use the respite service is a key issue in
         determining the required features of a respite house. The percentages of people with
         particular disability within the community provide an indication of the emphasis of the house
         design, with the major disability groups having significant influence on the design. All
         disability groups should have access to house attributes that provide for a positive
         experience. Due to the diversity of needs, the house needs a large storage space to change
         over specialist equipment, furniture and fittings. This will promote flexibility, and
         de-institutionalise the home and promote a homely feel.
         Table 1 shows the percentages of types of disability in the ACT and nationally, and the
         attributes required of housing for these disabilities.


24
   www.pc.gov.au/__data/assets/pdf_file/0016/111274/02-disability-support-overview.pdf (p. 6)
25
   The centre-based respite care home is not a health (class 9 building) facility. Nor are the staff trained to provide
health support. The context of respite with regard to health may occur after the person with disability has returned to
a healthy state but the carer needs time to ‘catch up’ with nonsupport issues.
26
   Workshop 2 (19 May 2011). Participants expressed a need for respite due to sleep deprivation during especially
difficult periods, but were unable to access respite care. The majority of other identified carers (there is a high
degree of observer error in this sample) also identified an inability to access respite in these circumstances.
27 Jardim C and Pakenham K (2010). Carers of adults with mental illness: comparison of respite care users and non-
users. Australian Psychologist 45(1):50–58.
                                                                                                                    14
Table 1          Primary type of disability of clients
Disability type                  ACT                National                            House attributea
                           No.          %          No.       %
Intellectual                942         24.0      27 000   24.8        Safe appliances, temperature control on water
                                                                       systems.
Specific learning            144         3.7       7 714        7.1    Fences, security, controlled kitchen access.
                                                                       Safe appliances can be provided, but
                                                                       supervision is required.
Autism                       404        10.3       3 695        3.4    Colour and decor of room. Need storeroom to
                                                                       regularly change furnishings.
Physical                     499        12.7      26 198       24.0    Increased circulation space within bedrooms
                                                                       and bathrooms for carer support. Storeroom
                                                                       for assisted mobility equipment that is easily
                                                                       accessible and can be changed when not
                                                                       required for other respite users. Storeroom is
                                                                       considered important for ‘house feel’ rather
                                                                       than ‘hospital feel’. Adjustable height benches,
                                                                       slide-out draws (rather than outwards
                                                                       opening). Door widths and operation to
                                                                       accommodate people with mobility disabilities.
Acquired brain                65         1.7       3 031        2.8
injury
Neurological                 137         3.5       2 610        2.4    Control of building services (building
                                                                       management system) such as electricity and
                                                                       water, when neurological conditions exist (eg
                                                                       access to water for people with
                                                                       hyponatremia).b Common requirement to be
                                                                       applied to all houses.
Deaf/blind                    np          np           86       0.1    Tactile surfaces to promote independent
                                                                       movement. Alternatively, more support from
                                                                       respite staff may be needed.
Vision                        17         0.4       2 537        2.3    Common services (fittings) between houses.
Hearing                        7         0.2       2 931        2.7
Speech                       781        19.9         415        0.4
Psychiatric                   24         0.6      32 728       30.0    No trap spaces. Security for staff. Fixtures and
                                                                       fittings need to mitigate the risk of harm as a
                                                                       result of breakages.c
Developmental                708        18.0          –np       –np    Required for Kese and possibly Teen. Living
delay                                                                  space for additional therapy services. Two
                                                                       living spaces required to support other people
                                                                       with disability.
Not stated/not               197         5.0           57       0.1
collected
Total                      3 925         100     109 002     100.0
np = figure not published
a House attribute may be applicable to more than one disability group.
b Hyponatremia is a metabolic condition in which the amount of sodium in fluids outside cells drops and water moves into the cells
to balance the levels, causing the cells to swell. Although most cells can handle this swelling, brain cells cannot, because the skull
bones confine them. Brain swelling causes most hyponatremia symptoms.
c Excludes specialist psychiatric disability services. The absence of data provides no indication of the house attribute requirements.
Professional judgment has been exercised, as this needs to be considered now so that the house can accommodate a changed use
in its future functional life. At 17.8% of the disability group, it is a significant house design feature (Productivity Commission (Aust)
(2011). Report on Government Services 2011. Commonwealth of Australia.
www.pc.gov.au/__data/assets/pdf_file/0016/105253/rogs-2011-volume2.pdf)

Although many people will not require particular design attributes, the following design
aspects for bedrooms were developed to ensure that the house does not inhibit use by a
particular disability group:


                                                                                                                                      15
        •    Physical disability — At least two bedrooms will require larger circulation spaces for
             assistance from disability support officers or to accommodate additional furniture for
             personal use.
        •    Utility bedroom — The utility bedroom is designed to respond to individual needs by
             being able to be reconfigured. From the report workshops, a range of scenarios required
             flexibility, including siblings sharing a room, children not wanting to be separated from
             the carer, and people who were physically larger (eg taller) needing a larger bed. The
             10 double powerpoints in the room reduce trip hazards while the room is reconfigured.
             Additionally, the small percentages of three disability groups (speech, hearing,
             deaf/blind) make it difficult to ascertain how the bedroom should be reconfigured. A
             utility room that can be reconfigured is designed to mitigate risk of noncompliance with
             the Disability Discrimination Act and increase utility of the building.
        •    Autism — At least one bedroom will need decor that can be customised to individual
             needs.

        In the consultation process, a range of day-stay activities were identified that required larger
        living spaces, including therapy and the ability to socialise with friends. A second living
        space is considered essential for day-stay activities to provide staff with flexibility to
        program a range of activities that promote a positive experience for clients.

        2.4.2    Disability severity

        The severity of the disability determines the degree of modification required for the house.
        However, the large spectrum of disability, from mild to profound and across all disability types,
        means that different degrees of modification are required. A house with more modifications and
        in-built specialist disability support equipment has a greater ‘institutional feel’ that often does
        not contribute to the positive experience of others who do not need the modification. The
        modification must meet the safety needs of all but support the individual care plans and
        experience of as many as practical.
        All current ACT Government respite care clients (except for six adults) have an intellectual
        disability recorded as either their primary disability or a significant disability. The report on
        disability support services28 notes that people currently accessing respite are generally people
        with more profound or severe disability.29 Current needs should be balanced against potential
        changes over the life of the houses.
        Current data on the support needs of people with disability in the ACT and nationally (see
        Appendix A, Table A.6) illustrate a strong need for highly modifying the houses. The self-
        care data show that a significant percentage of clients do not require support, but a significant
        percentage use support always or sometimes. This indicates that one bathroom in the house
        should be larger, with more specialist equipment and greater modifications, to cater for
        people who need assistance. Modification of facilities for these people could potentially
        diminish the experience of people who do not require specialist care. Ideally, separate
        bathrooms are appropriate.
        The mobility data also show that half the clients have no mobility requirements, while half
        require support sometimes or always. This indicates that half the people require larger space
        in rooms and passageways for lifting or other specialist equipment. If space is not provided, it


28
   Australian Institute of Health and Welfare (2011). Disability Support Services 2008–09: Report on Services
Provided under the Commonwealth State/Territory Disability Agreement and the National Disability Agreement,
Disability series, cat. no. DIS 58, AIHW, Canberra.
29
   Australian Institute of Health and Welfare (2011). Disability Support Services 2008–09: Report on Services
Provided under the Commonwealth State/Territory Disability Agreement and the National Disability Agreement,
Disability series, cat. no. DIS 58, AIHW, Canberra, p. 27.
                                                                                                                16
         will limit the people able to be accommodated and may risk noncompliance with the
         Disability Discrimination Act.

         2.4.3    Disability complexity

         Disability complexity occurs when a person records a primary disability but a secondary
         disability also affects their care needs. At present, although there is anecdotal evidence of
         disability complexity requiring greater care needs, there are insufficient data to assess the
         impact on house design. Future demand regarding disability complexity is also difficult to
         determine because there are a lack of quantitative data, and medical advances may increase or
         decrease the proportion of people with complex disability (see Section 2.2.3). Flexibility in the
         house design is considered highly desirable to mitigate risks associated with disability
         complexity. Option 4 provides for two larger bedrooms for each house, one of which can be
         reconfigured depending on client needs.
         It should be noted that the respite care building classification is as a boarding house (class 1B
         or class 3) rather than a health facility (class 9). Furthermore, the competency standards for
         disability support officers are different from those for medical professionals. If specialist
         respite facilities are required for people with complex disability, a medical facility might be
         more appropriate.

2.5      Disability compatibility
         The respite experience for the person with disability is, in part, affected by their interaction
         with other people using the respite centre. A number of house features are dependent on
         compatibility of the clients and their disability needs. Although administration can manage
         compatibility through planned access to respite, this might be affected by emergency or crisis
         respite care.

         2.5.1    Safety

         Safety is important to all people using the homes. Some people with disability may be
         vulnerable to other people with disability. Supervision is important to mitigate this risk, but
         people who need high levels of assistance with activities of daily living (ADL) often require
         the assistance of two disability support officers,30 which can result in short periods of limited
         supervision for other clients. Although management solutions can mitigate this risk through
         effective programming, lockable bedrooms are also required. To reduce the time spent on the
         needs of any one person, strategies can include designating one large room for high-needs
         clients with a track hoist and an adjacent bathroom. This mitigates the lifting risk and
         minimises the time required for two disability support officers.

         2.5.2    Gender issues

         Disability support officers perform many of the functions of a guardian for clients while they
         are in respite care. It is important, while supporting lifestyle choices, to protect potentially
         vulnerable people from inappropriate gender interaction. Gender separation might be
         important for people with certain types of disability. For child siblings, sharing of a room
         might be appropriate, leading to the need for a larger room.31 Other measures to mitigate risk
         include increased supervision (which increases the operating budget, especially at night) and
         locks32 that clients can operate for their own rooms.


30
   For example, lifting people with profound mobility disability into and out of baths requires two people.
31
   There are insufficient data to determine a quantity.
32
   A building management system that provides for access control and an alert is required to support supervision.
This would include a warning system at night for people leaving the bedrooms.
                                                                                                                    17
         2.5.3    Privacy

         Privacy, when needed, is important. For self-care, locks on all doors are required. Under
         options 3 and 4, the spatial allocation for bedrooms for adult and teen respite accommodation
         is increased to allow for private time in the person’s own room. For children aged 5–
         12 years, no allocation of space for individual recreation in bedrooms has been provided due
         to supervision requirements.

         2.5.4    Indoor living spaces

         Differences in disability type and severity and in day-stay activities mean that at least two
         living spaces are required in each house. The ideal spatial allocation is based on four people
         with mobility disability and six seating spaces for others in the first living space.33 The
         second living space is allocated four seats of furniture and space for two people with mobility
         disability. The requirements are based on a combination of staff consultations, community
         feedback from the report workshops34 and spatial analysis. Specific differences exist in age-
         appropriate care regarding visual supervision:
         • 5–12 years — Visual supervision of clients is required. For people in need of assistance
             with ADL, one disability support officer is often required to prepare food or attend to
             self-care needs of the person with disability. Open-plan living is preferred; however,
             noise can be an issue. Mitigation strategies include additional staff or managing
             compatibility with care plans.
         •   13–18 years — Periodic visual supervision is desirable; open-plan living is desirable.
         •   18–64 years — Periodic visual supervision is desirable; open-plan living is desirable.

         2.5.5    Outdoor living space

         Supervision of living spaces is important. With two indoor living spaces, one outdoor living
         space is also required. The outdoor space needs to support age-appropriate activities. For
         people with mobility impairment, flat areas are important. Weather protection is mandatory
         to allow use for at least six months of the year. Age-specific needs are:
         • 5–12 years:
             –    covered play space with softfall surface
             –    no climbing access on fences; no climbing access to house
             –    grassed area for free play; paved area for wheeled toys (tricycles, etc)
             –    potentially a second space for tactile activities (autism), which could include
                  gardening or sandpit; if a second space is provided, access to the other outdoor space
                  needs to be limited
             –    all outdoor services to be secured.

         •   13–18 years:
             –    area for ball play — for people in need of assistance with activities of independent
                  living and in accordance with the care plan, this might be an adjacent oval
             –    outdoor socialisation space that includes seating
             –    no climbing access on fences; no climbing access to house
             –    grassed area for free play; paved area for wheeled toys

33
   Allows the allocation of furniture and wheelchair access. This would be the primary living space and include the
eating area. If larger groups of day-stay people required space, there could be a reconfiguration of furniture.
34
   Workshop conducted by author (19 May 2011)
                                                                                                                  18
    –   all outdoor services to be secured.

•   18–64 years:
    –   consideration to be given to both older and younger adults
    –   outdoor socialisation space that includes seating
    –   all outdoor services to be secured.

2.5.6   Lifestyle choices

A diverse range of lifestyle requirements were expressed during the report workshops. The
lifestyle choices often involve people with disability bringing items to the house. The house
attributes to accommodate lifestyle choices include a range of differently sized bedrooms,
and provision of multiple powerpoints and movable furniture, to allow reconfiguration. At
least one room will require fixed furniture and attention to fittings and windows to prevent
damage. A storeroom for furniture changeover is also required. Insulation between the
bedrooms is required so that the quality of experience for clients is not reduced by noise (see
Section 2.5.9).

2.5.7   Emergency care

The ACT Government provides emergency respite care. Emergency care is required when
the carer’s natural support networks break down and the carer needs to meet their own needs
as a priority. As a consequence, the person with disability may require respite
accommodation at short notice. At present, this is provided with changes to existing bookings
to enable an emergency response. Clients provided with emergency care might be in respite
care for an extended period, and this can significantly affect the compatibility of people
within the house and therefore the overall utilisation of respite.

2.5.8   Health requirements

People with both disability and a degenerative health issue are still eligible for respite care,
provided that the care does not require medical supervision. Current respite facilities do not
accommodate this requirement. Environmental control (such as temperature and humidity
control) may be required for a client, and this might be contrary to other client needs. One
room in the house, probably the utility bedroom, would need a separate climate-controlled
environment.

2.5.9   Stimuli and noise abatement

Reducing the stimulus during the evening and night hours is considered important for the
benefit of all clients. Noise abatement between bedrooms is also considered important to
promote a positive experience for clients. The hallway requires appropriate lighting at night
to ensure that unintended stimulus is not created. Additionally, the needs of different age
groups need to be reflected in house features. These needs include:
• 5–12 years: different bedtimes according to client care plans; separation of main living
    spaces
•   13–18 years: private time in room for music and television (but not infringing on other
    clients); differences in bedtimes
•   18–64 years: none identified.




                                                                                                   19
3     C u r r e n t AC T r e s p i t e s e r vi c e s

      Key points
      The ACT Government provides respite care in four houses covering child, teen and adult
      services. In general, the ACT Government provides a broad and inclusive service for people
      with more severe disability in a group environment. Currently, government centre-based respite
      care focuses on clients with severe and complex intellectual disability. Across the four houses,
      68.3% of clients have a primary intellectual disability; when secondary disabilities are included,
      this increases to 80% of clients. Almost all clients have a secondary disability.
      Government respite houses have a potential capacity of 8760 bed-nights given all available
      bedrooms across all four properties. However, 2162 of these available bed-nights are not
      available due to the need for staff sleepovers, the need for recreational space for children
      (bedrooms converted to play or recreational areas), and that the properties do not operate over
      the Christmas shut down period . This leaves a maximum operational capacity of 6598 bed-
      nights per year across all four properties.
      The nature of the disability and the assistance required significantly influence house design. In
      planning for future care needs, it must be decided whether the current mix of clients and
      disabilities will continue in the future. Currently, the range of secondary disabilities shows that
      it is important that the houses can support individuals with complex requirements.
      Given economies of scale and the service model, ACT Government–provided bed-nights are
      cheaper than those of private providers. Costs could be further reduced if currently unused bed-
      nights were used. If optimal efficiency could be achieved, the ongoing cost of bed-nights could
      be reduced from $353 to $276 per night. This would require a combination of client
      compatibility through improved management systems and facilities that support the care
      provided by the disability support officers, to ensure that the services continue to provide a
      quality experience for all clients.

3.1   Introduction
      Disability ACT is the lead agency in the ACT supporting people with disability. Respite care
      is one of the services provided to people with disability and their carers. This section
      examines existing ACT centre-based respite services for people with disability, to develop a
      baseline for future requirements.

3.2   ACT respite environment
      The ACT Government currently operates four centre-based respite houses. Although there
      are differences between each respite house, the bedroom numbers, policies and costs are
      essentially similar. All respite centres have two disability support officers during the day
      when occupied and one staff member staying at night. All respite centres are within an urban
      environment and blend in with the surroundings.

      3.2.1   Bed-nights and day-stay

      Respite care in the ACT is provided through a combination of bed-nights and day-stay (see
      Appendix A, Table A.7). The four ACT Government–operated respite houses have a total
      bedroom capacity of 8760 bed-nights, based on 52 weeks of operational service. Operational
      requirements such as sleepover capacity for staff and recreational space for clients and that
      respite services are only available 51 weeks a year, the actual usable capacity of the four
      current respite properties is 7854 bed-nights. Client compatibility and specialised individual
      support needs allows for a typical operational occupancy of 84% or 6598 bed-nights

                                                                                                        21
The ACT Government also provides between 1200 and 2000 hours of flexible respite through
the four respite homes for families that require a day only service. The use of the respite
homes for flexible respite may limit the bed-night capacity of homes due to considerations
such as client compatibility, individual support needs and limitations of the physical
environment.
Carers need both the government and community organisations to meet current respite care
needs (see Appendix A, Tables A.8 and A.9). Although the numbers provided by different
data sources were mixed, block respite provided by government is clearly valuable, and the
number of people accessing services is reasonably divided between government and
community organisations. Some carers need additional quantity of centre-based respite care
and also more flexible care options. The number of carers needing service but not receiving
timely support is unknown. House options that provide for additional bedroom availability
and living spaces for flexible respite are likely to satisfy this demand.

3.2.2   Disability type

In general, although the ACT Government provides services to all people, its key focus is on
people with more severe disability in a group environment. The current emphasis of ACT
Government centre-based respite services is highly skewed towards people with complex
intellectual disability. Almost 68% of people accessing ACT centre-based respite have a
primary intellectual disability (see Appendix A, Table A.4). When a secondary disability is
included, ACT respite houses support 80% of people with intellectual disability (see
Appendix A, Table A.5). The range of secondary disabilities shows that it is important that
the houses can support clients with complex requirements. This indicates that generally larger
and more flexible spaces are required within a house design. In planning house designs,
consideration should be given to both the current and the future range of disability types in
respite care, again emphasising the importance of design flexibility.

3.2.3   Cost of services

Cost comparisons between the ACT Government and private providers are difficult because
of differences in business models. Private providers often bid annually for government
funding and therefore may have some uncertainty about their sustainability, and at present
operate in a less regulated environment. Conversely, although the government provides
respite services to a greater range of people and the services are more regulated, they are not
subject to many commercial realities.
Comparisons of costs between the private providers vary widely: Hartley provides centre-
based respite care for approximately half the price of Catholicare; Baptist Community
Services was able to provide in-home care services at 82% the price of Catholicare. There are
also large cost fluctuations over different years between private providers. Government-
provided centre-based respite is approximately half the cost of the most expensive private
respite, probably due to economies of scale. The cost of government-provided centre-based
respite care is fairly stable.
The costs of providing respite in government centres are reasonably similar between each
centre. The average cost across the four houses is approximately $582 000 per year or
currently $353 per bed-night. If the houses were operating at peak capacity (every bed
occupied every night), this price could drop to $276 per bed-night. Wage-related costs are
approximately two-thirds of the annual operational cost, and fixed costs for depreciation and
facilities operation are approximately one-third of the cost.




                                                                                              22
        The cost of respite is significantly less than that of accommodation support. For a similar
        number of clients, the cost of respite services is less than 20% of the cost35 for
        accommodation support.

3.3     Housing types
        Disability ACT operates respite care for children (one house — Kese), teens (one house —
        Teen) and adults (two houses — Hughes and Elouera). Common features and attributes are
        preferred between houses to support client needs as they progress from Kese to the adult
        houses. The bed-nights within the houses are currently underutilised as a result of client
        compatibility issues and routine cancellations or illness.

        3.3.1    Child respite

        The ACT Government operates one child respite house for children between the ages of 5
        and 12. The disability group that predominantly uses the services are children with
        intellectual disability (51%) or autism (31%). Staff are required to supervise children during
        waking hours and monitor any movement from bedrooms during sleep times. It should be
        noted that early intervention (0–6 years) for children with developmental delay can have
        positive results, which reduces the need for respite later. This lessening of demand for clients
        with developmental delay may change the future demand profile.
        Kese provides services to a significant percentage of children with complex disability. Twenty
        of the 30 children who identified a primary disability other than intellectual also have an
        intellectual disability.
        Kese provides 1500 bed-nights per annum for 61 children, at an average of 25 nights per
        person, 285 bed nights below available bed-nights. This difference relates to the impact of
        client compatibility and cancellations. Kese is not currently used during school hours; this is
        equivalent to around 1000 vacant hours that could be used for other groups (eg mothers’
        groups for children below school age or other groups with disability) or activities
        (eg therapy). Management of these additional services may require additional funding and
        appropriate facilities.

        3.3.2    Teen respite

        The ACT Government operates one teen respite care house for young people between the
        ages of 13 and 18.
        Teen care provides 1500 bed-nights per annum for 51 children at an average of 30 nights per
        person, 285 bed nights below available bed-nights. This difference relates to the impact of
        client compatibility and cancellations. Teen house is not used during school hours and could
        have programs for young adults who have left school or other groups that do not have severe
        or profound disability. Like Kese, the facilities would need to be appropriate for these uses,
        especially the living spaces, and appropriate management arrangements would need to be in
        place.

        3.3.3    Adult respite

        The ACT Government operates two adult respite centres — one in Charnwood (Elouera) and
        the other in Hughes — for adults between the ages of 18 and 64. Adult respite provides



35
  Productivity Commission (Aust) (2011). Disability Care and Support inquiry report. . Commonwealth of
Australia. www.pc.gov.au/projects/inquiry/disability-support/report


                                                                                                         23
         3600 bed-nights per annum for 108 adults at an average of 34 nights per person36 , 685 bed
         nights below available bed-nights. This difference relates to the impact of client compatibility
         and cancellations
The current actual unused capacity across the four Government respite houses is 1256 bed-nights due
to considerations such client compatibility, individual support needs and limitations of the physical
environment. A different configuration of the built environment may allow for more flexible and
responsive use of the houses to enable a higher usage rate. Within the current environment, the
existing targets are realistic, enabling the service to respond appropriately and safely to individual
support needs, ensuring that visitors have an enjoyable time at respite and carers are able to take
advantage of a break from caring responsibilities.
However, based on the number of bedrooms across the four properties, not taking into account the
considerations mentioned above (client compatibility, capacity for staff sleep over, individual
support needs and limitations of the physical environment), there is potentially an unused capacity of
2162 bed nights overall.




36 However, this conflicts with the policy that respite is provided for one week in every five or six.
                                                                                                         24
4          R e c e n t d e ve l o p m e n ts i n Au s t r a l i a

            Key points
            The research for this report looked at the current environment and likely future of respite care in
            Australia. The main change forecast is the National Disability Insurance Scheme (NDIS) that
            has been proposed by the Australian Government.
            A key aspect of the NDIS is having private providers undertaking a range of services that are
            currently provided by government. The NDIS would increase annual disability funding by
            $6.3 billion nationally (currently the disability sector receives $1.7 billion from the Australian
            Government and $4.5 billion from state and territory governments).
            An increase in services provided by community services would have implications for ACT
            Government respite care. However, it is likely that there will still be a need for the bed-night
            and emergency care that is provided at the government respite centres. Most importantly,
            government is likely to continue to play a key role in providing respite care for people with
            severe and complex disability. Furthermore, although the budgets are proposed to increase,
            there is still a risk of funding pressures. At present, government-provided centre-based respite
            has the lowest bed-night rate.
            The NDIS is intended to be implemented in 2015. The existing four ACT centre-based respite
            care houses are ageing; from around 2015, major building systems will start to break down or
            there will be increasing risks of noncompliance with the Disability Discrimination Act.
            Refurbishment or new buildings would mitigate this risk.
            Literature research for this report looked at current respite care models in use in Australia and
            overseas (see Appendix B). The literature search sought to make comparisons with other
            jurisdictions, respite studies and initiatives to inform the selection of the best option for centre-
            based respite care in the ACT. The literature research validates the general trend towards client-
            choice disability models.

4.1        Introduction
           A range of federal reforms are taking place that affect respite care.

4.2        National Disability Agreement
           On 1 January 2009, the National Disability Agreement (NDA) replaced the Commonwealth
           State/Territory Disability Agreement. The NDA is designed to improve and increase services
           for people with disability and their families and carers. The NDA clarifies the roles and
           responsibilities of governments in the provision of support to people with disability and
           provides the basis for reforms to the disability services system.

4.3        National Disability Strategy
           Following a period of consultation, the National Disability Strategy was endorsed by the
           Council Of Australian Governments on 13 February 2011. At the same time, the ACT
           Government, in concert with the Australian Government, other state and territory
           governments and local governments, is seeking to adopt a unified approach to policy and
           program development. Consequently, there is likely to be significant change across all
           mainstream services and community infrastructure.37 The national strategy aims to improve
           the outcomes for people with disability and their carers and families. There is a 10-year plan


37
     www.fahcsia.gov.au/sa/disability/progserv/govtint/Pages/nds.aspx
                                                                                                                 25
        with six key priority areas. Of the six areas, those that most directly relate to respite care
        are:38
        • Inclusive and accessible communities — the physical environment, including public
            transport; parks, buildings and housing; digital information and communications
            technologies; and civic life, including social, sporting, recreational and cultural life. The
            implications for the ACT respite houses are providing a location adjacent to a public
            transport route, Wi-Fi or equivalent technology, and ideally being close to a recreational
            area (shops, entertainment, etc) for those people able to use the services.
        •   Personal and community support — inclusion and participation in the community,
            person-centred care and support provided by specialist disability services and mainstream
            services, informal care and support. As part of a client-centred care plan, possible
            implications for the ACT respite houses include social activities such as birthdays or the
            capacity to entertain friends. This is part of the day-stay metric and affects the spatial
            allocation to the living areas. Especially for people with learning difficulties, the care
            plan might include reinforcement of life skills such as cooking, preparing a lunch for
            independent living (eg for work), or laundry skills. Discussions at the report workshops
            suggested a design requirement that took into account a range of informal activities
            (parties, social gatherings) that could be conducted in the respite house.

        The National Disability Strategy has three pillars:39
        • a new and comprehensive National Disability Insurance Scheme (see Section 4.4) to
           deliver care and support for life for people with severe and profound disability, using an
           individualised and lifetime approach, including reform of state- and territory-based
           insurance schemes to include all traumatically injured people
        •   a strong income support system, which, with other initiatives, might significantly alter the
            need for respite care
        •   a range of measures to enable increased private contribution.

4.4     National Disability Insurance Scheme
        The National Disability Insurance Scheme (NDIS) is a radical approach to current disability
        services. The current disability support system is fragmented and does not have people with
        disability or their carers at its centre.40 The NDIS aims to bring disability services into line
        with the Australian health and social security system, in which support is based on individual
        needs and circumstances.41
        The NDIS is a response to identified future demand for disability services. Disabilities are
        traditionally long (greater than six months) and often have lifetime implications.
        Extrapolation of recent trends indicates that demand for specialist disability support services
        is likely to increase by 5–10% each year in real terms.42 Nationally, the number of people
        with profound and severe disability is likely to increase at a rate of two to three times the rate
        of general population growth.43


38
   Australian Government Department of Families, Housing, Community Services and Indigenous Affairs (2011).
National Disability Strategy. www.facs.gov.au/sa/disability/progserv/govtint/nds_2010_2020/Pages/default.aspx
39
   www.fahcsia.gov.au/sa/disability/pubs/policy/way_forward/Documents/exec.htm
40
   www.pc.gov.au/projects/inquiry/disability-support/report (p. 6)
41
   www.fahcsia.gov.au/sa/disability/pubs/policy/way_forward/Documents/exec.htm
42
   PricewaterhouseCoopers 2009 National Disability Insurance Scheme Final Report, p. 9.
www.fahcsia.gov.au/sa/disability/pubs/policy/National_Disability_Insurance_Scheme/Documents/PWC_NDIS%20
Report_2009.pdf
43
   PricewaterhouseCoopers 2009 National Disability Insurance Scheme Final Report, p. 34.
www.fahcsia.gov.au/sa/disability/pubs/policy/National_Disability_Insurance_Scheme/Documents/PWC_NDIS%20
Report_2009.pdf
                                                                                                           26
The proposed NDIS requires a significant increase in funding that could potentially change
the respite care environment. The Australian Government currently provides $1.7 billion to
the disability sector, while the state and territory governments provide $4.5 billion.
Additional funding of $6.3 billion from government will be required for the NDIS.
A key aspect of the NDIS is having private investment and, by implication, private providers
undertaking a range of services that are currently provided by government. However, only a
possible model has been proposed, and further feasibility studies are to be undertaken. The
proposed implementation period for the NDIS is 7–10 years.

4.4.1   Impact of National Disability Insurance Scheme on centre-based respite
        care

An element of the NDIS is focused on carers and their ability to obtain respite. Decisions
surrounding potential investment in respite care by the ACT Government need to consider
the likely changes in demand brought about by the NDIS.
Under the proposed NDIS model, government-provided centre-based respite care is an
option. However, the client and carer will be provided with additional options through private
providers. The system would change from the existing provider-centred approach to a
consumer-choice model. In a consumer-choice model, if government accommodation is of a
lower standard, it is unlikely to be used. However, if the ACT Government continues to be
the provider, there is likely to still be a need for the emergency care that is currently provided
at the government respite centres. In particular, government respite care is likely to continue
to be needed for people with severe and profound disability.
Although budgets are proposed to increase and there will be greater choice, there is still a risk
of funding pressures. At present, government-provided centre-based respite has the lowest
bed-night rate (based on six bedrooms in a respite house and two disability support officers).
The NDIS is intended to be implemented in 2015 — that is, during the same period as the
execution of any ACT respite care solution. The existing four ACT centre-based respite care
houses are ageing; from around 2015, major building systems will start to break down or
there will be increasing risks of noncompliance with the Disability Discrimination Act. These
building system failures are likely to disrupt the provision of services.
If there is a delay in implementing the NDIS, the risk of disruption of ACT respite services is
likely to increase. Strategies to mitigate this risk include:
• refurbishment of the major building systems that have the highest risk of failure
     (option 2)
•   building new respite houses on either existing or new sites (options 3 and 4) — this is
    possible but has implications for the return on investment if the NDIS eventuates; any
    new build is likely to be completed towards the end of 2014.




                                                                                               27
5   An a l y s i s o f h o u s e d e s i g n o p t i o n s

    Key points
    The four options for the ACT respite care houses (option 1 — do nothing, option 2 — renovate,
    option 3 — build new on existing site, option 4 — build new on new site) were assessed
    according to the quantity, quality, timeliness and cost of respite they offered.
    Option 1 (do nothing) was also specifically considered according to the limitations of the
    houses and their compliance with the Building Code of Australia and the Disability
    Discrimination Act. For all of the houses, the inspections indicated several noncompliances.
    Although some of these are reasonably small, the facilities will age and increasingly fail until
    the houses reach the end of their functional lives in approximately 5–15 years.
    Quantity: The bed-nights available under options 1 and 2 are 1650. Under option 1, the 1650
    bed-nights per house are based on current use. The renovation under option 2 does not increase
    the floor area, and thus capacity remains the same. The need for respite services is likely to
    increase over the life of the buildings (40 years). Neither option 1 nor option 2 will meet needs
    over this period. The bed-nights available under options 3 and 4 are 2106. The difference
    between options 3 and 4 is the addition of a second large bedroom under option 4, which
    enables the provision of respite to more than one client with high and complex needs at any
    time. Options 3 and 4 support improved compatibility of clients. Option 4 is assessed highest
    according to the quantity criterion.
    Quality: Options 1 and 2 both have risks of noncompliance under the Building Code of
    Australia and the Disability Discrimination Act. Options 3 and 4 have been designed with best
    practice, to eliminate these risks. The light and solar performance of the houses is best under
    option 4. Option 3 provides for an energy-efficient building, but the block orientation does not
    enable optimum solar orientation. Functionality is increased under options 3 and 4, with
    improved support for clients with high and complex needs. Bathrooms and kitchens are also
    improved under options 3 and 4. For the children’s house, outdoor play space is important, with
    option 4 providing the best outcome. Option 4 is assessed highest according to the quality
    criterion.
    Timeliness: There is an identified need for more short-notice care resulting from carer issues
    with wellbeing, work or relationships. The government also provides emergency
    accommodation for clients when carers are no longer able to cope. Supporting timeliness of care
    means that the house needs to be responsive to diverse needs. Options 3 and 4 have a balance of
    room types that cater for different needs associated with differences in disability type, severity
    and complexity; family arrangements; individuals; and other factors. A key aspect of option 4 is
    the two large bedrooms that can be reconfigured for the most complex needs. Option 4 is
    assessed highest according to the timeliness criterion.
    Cost: Comparative cost analysis seeks to select an option that provides an enduring service to
    clients at the lowest possible cost per bed-night. Including capital and operating costs, the
    option cost analysis shows that, at the end of 8 years, option 1 has a cumulative cost per bed-
    night of $353, and, at the end of 10 years, option 4 has a cumulative cost per bed-night of $352.
    Option 1 is therefore assessed highest according to the cost criterion over 8 years or option 4
    over 10 years. However, with option 1 there are also financial risks of noncompliance with the
    Disability Discrimination Act, breakdown of major building systems and additional
    maintenance.
    In conclusion, option 4 is best able to meet the quantity, quality, timeliness and long-term cost
    aspects needed by stakeholders.




                                                                                                        29
5.1   Introduction
      For each of the four existing respite care houses in the ACT, four were options considered,
      taking into account the current and future needs for ACT respite care. The house options are
      in Volume 3:
      • E.1 considers option 1 (do nothing); the houses were assessed according to the Building
          Code of Australia (BCA) and the Disability Discrimination Act (DDA).
      •   E.2 considers options 2 (renovate), 3 (build new on existing site) and 4 (build new on
          new site) for child respite care at Kese house.
      •   E.3 considers options 2 (renovate), 3 (build new on existing site) and 4 (build new on
          new site) for teen respite care at Teen house.
      •   E.4 considers options 2 (renovate), 3 (build new on existing site) and 4 (build new on
          new site) for adult respite care at Elouera and Hughes houses.

      Options 2, 3 and 4 each have the strengths and limitations noted on the drawings in
      Volume 3, Appendix F. Detailed house-specific information about building classification is
      contained in appendix. The plans are all compliant with existing building regulations.
      For option 4, two sub-options are provided. The options were developed based on priority of
      needs between different groups. Sub-option 4a is a courtyard-style house on a 1156 m2 block.
      Sub-option 4b is an L-shaped alfresco outdoor space that requires a 1330 m2 block. Although
      the functionality is similar and included in the tables, the more expensive sub-option 4b has
      been used for cost comparison with the other options.

      5.1.1   House features

      The functional life of a house is generally considered to be 40 years. Consequently, the house
      features and attributes (functional and spatial allocation) need to balance current needs with
      future requirements of the three principal stakeholders: the carer, the client and the ACT
      Government.
      Key features of the respite house are numbers of bedrooms, living spaces compatible with
      other clients, and location. The location is important for social inclusion and friendships,
      although there was no significant evidence of visitors or service users accessing public
      transport to or from respite houses. If a change of policy is implemented to accommodate
      people with mild or moderate disability, the need for transport could markedly change.
      Conversely, technological change may bring about virtual visits.
      Six four-bedroom houses were considered briefly as an option. Providing the same 24 existing
      bedrooms in six houses is likely to increase annual expenditure for respite houses by
      approximately $1.1–1.2 million. This might increase flexibility but would commit these costs
      and reduce flexibility for other programs.

5.2   Assessment of existing houses
      The current houses were assessed according to their limitations if option 1 (do nothing) was
      selected. This compared the facilities with existing and future respite care needs, and with
      their current and future compliance with the BCA and the DDA. For all the houses, towards
      the end of their lives the major building systems (hot water, electrical, foundation, structural)
      will start to fail and will require replacement. Replacement of the major building systems is
      likely to disrupt services. If any major renovation work is undertaken, these deficiencies must
      be rectified as a priority, which is likely to be a significant base cost before functionality is
      improved.



                                                                                                     30
5.2.1   Kese house

Salient house attributes include:
•   two indoor living spaces
    –   one of the indoor living spaces is a converted bedroom and is small
    –   space for therapy is limited
•   two outdoor living spaces
    –   only one space can be supervised at any time
    –   one outdoor play space for general play includes paths and climbing equipment
    –   the second outdoor play space is for tactile experiences and includes a garden and
        sandpit
•   two bathrooms, one of which has disabled access.

Several noncompliances were found in the BCA and DDA inspections. Some of these are
reasonably small, and the home can continue to operate under the ‘do nothing’ house option.

The house will reach the end of its functional life in approximately 5–15 years.

5.2.2   Teen house

Salient house attributes include:
•   two indoor living spaces
    –   one of the indoor living spaces is a converted bedroom and is small (three people
        maximum)
•   one outdoor living space, which is marginal
    –   there is little sun protection
    –   access is via an open space that is subject to the weather.

There have been some renovations to the existing bathrooms that improve functionality.

Several noncompliances were found in the BCA and DDA inspections. Some of these are
reasonably small, and the home can continue to operate under the ‘do nothing’ house option.

The house will reach the end of its functional life in approximately 10 years.

5.2.3   Adult houses

Eloura house
The Eloura house attributes include:
•   two bathrooms
    –   one bathroom is of marginal use — access is difficult because of narrow access and
        tight spaces
•   bedrooms
    –   one bedroom has narrow access and has the capacity for limited use; this bedroom is
        associated with the marginal bathroom (access to the other bathroom is through both
        living areas)
•   kitchen and laundry

                                                                                             31
          –   the kitchen is of marginal use because there is no opportunity for carer support for
              people practising activities for independent living
          –   the laundry is considered of marginal use as it is essentially an enlarged passageway
              with narrow access; laundries have significant use for washing of linen and towels
              associated with high occupancy.

      There have been some renovations to the existing bathrooms that improve functionality.

      Several noncompliances were found in the BCA and DDA inspections. Some of these are
      reasonably small, and the home can continue to operate under the ‘do nothing’ house option.

      The house will reach the end of its functional life in approximately 10 years.

      Hughes house
      The Hughes house attributes include:
      •   two bathrooms
          –   one bathroom is of marginal use — access is difficult because of narrow access and
              tight spaces
      •   kitchen and laundry
          –   the kitchen is of marginal use because there is little opportunity for carer support for
              people practising activities for independent living
          –   the laundry is an oversized cupboard off the hallway; laundries have significant use
              for washing of linen and towels associated with high occupancy.

      There have been some renovations to the existing bathrooms that improve functionality.

      Several noncompliances were found in the BCA and DDA inspections; although the house is
      reasonably new, it has many minor issues that inhibit functionality. Some of these are
      reasonably small, and the house can continue to operate under the ‘do nothing’ house option.

      The house will reach the end of its functional life in approximately 15 years.

5.3   Analysis of house design options
      Table 2 at the end of this section provides a comparison of the relative values, costs, issues
      and risks of the four house options. The quantity, quality, timeliness and cost of the house
      options are compared in the following sections.

      5.3.1   Quantity

      The quantity of respite includes both bed-nights and day-stay hours. Although each house has
      six bedrooms and two indoor living areas, the ability to provide respite services is determined
      to a significant extent by the house attributes.
      Key limitations of option 1 are the typically small bedrooms and generally small second
      living area. Options 3 and 4 support improved compatibility of clients. For teens and adults,
      depending on their care needs, bedrooms are able to be used for personal recreational
      activities. Bedrooms can have furniture changed to meet client needs because of the
      increased storage space in the house, the number and location of power outlets, and noise
      attenuation between rooms to increase audio privacy. The ability to allocate bedrooms to
      clients based on their preferences is greater for options 3 and 4, with option 4 rooms
      providing slightly more space to create additional management flexibility.

                                                                                                       32
         The bed-nights available under options 1 and 2 are 1650. Under option 1, the 1650 bed-nights
         per house are based on historical use. The bed-nights for option 2 have the same number,
         based on a renovation of the existing house that does not increase the floor area but seeks to
         optimise internal layout. The bedrooms and hallways are typically small, preventing a design
         that enables access to more functional bedrooms. Consequently, the bed-nights are not
         increased.
         Respite services are likely to be required at a rate greater than existing capacity for the
         40-year life of the houses. Neither option 1 nor option 2 will meet ACT respite needs over
         this period.
         The bed-nights available under options 3 and 4 are 2106.44 Options 3 and 4 provide a
         significantly larger house that supports the capacity of 2106 bed-nights per year. Over the
         four houses, this amounts to an additional 1824 bed-nights each year of increased service.
         The key difference between options 3 and 4 is the inability to provide for a second large
         bedroom under option 3 due to the block size and planning limitations. The lack of the
         second large bedroom limits management options to provide respite to one client with high
         and complex needs at any one time.
         The two indoor living spaces enable substantially different activities between the options.
         Kese and Teen currently have a converted bedroom as the second living area (option 1).
         These are small and allow for 1–3 people, depending on client needs. Since option 2 does not
         increase the floor area, there is a minimal improvement in the space, and it does not increase
         functionality. In both options 3 and 4, the living areas are substantially increased to support
         day-stay activities. The principal benefit for options 3 and 4 for Kese and Teen is the ability
         to provide for an additional 2000 hours of flexible respite in the living spaces during school
         hours. The additional size of living spaces under option 4 allows more clients with high and
         complex needs to use the spaces.
         The ranking of house options, in descending order, based on the quantity criterion is
         option 4, option 3, option 2 and option 1.

         5.3.2    Quality

         The client is principally concerned with the quality of experience that they receive in respite
         care.45 At a minimum, the facilities should provide a healthy and safe environment. Ideally,
         the house should promote the wellbeing of the person with disability by providing an
         appropriate level of amenity. The quality analysis of the house options focuses on the effect
         that the facilities have in supporting the quality experience of the service user and meeting
         statutory and policy requirements.
         The key statutory requirements are the BCA and the DDA. Although probably compliant
         when the houses were constructed, the houses have minor compliance issues with the current
         BCA (see Section 5.2). It is likely that the need to maintain and replace house components
         over the next 10 years for option 1 is substantially higher than for other options. Option 2
         corrects many of these aspects as part of the renovation work. Options 3 and 4 provide for a
         low maintenance and replacement option.
         Linked with the building codes are risks associated with the DDA. For option 1, the risks are
         assessed as high because, over the next 10 years, the buildings will reach the end of their
         functional lives. Option 2 reduces the level of many of the risks to medium over the next


44
   2106 comprises 6 bed-nights for 365 days each year. However, the current operating costs do not provide for
14 days (336 bed-nights) during the Christmas–New Year period.
45
   However, it should be noted that the submission from UnitingCare Australia to the Productivity Commission’s
Public Inquiry into Disability Care and Support, as well as the community consultation undertaken as part of this
report, indicated that people with disability did not always like the notion of respite as it made them feel like a
burden and that they are being judged.
                                                                                                                      33
10 years, but the level will gradually rise to high in the later years. Options 3 and 4 have used
good to best design practice to future-proof the designs, and DDA risks are considered low.
The client will have substantially different experiences between the options. Option 1
provides no change to the current experience. Option 2 is constrained by the existing
buildings but has better energy efficiency than option 1 as a result of improvements in the
building fabric. Option 3 provides for an energy-efficient building, but the block orientation
does not enable optimum solar orientation. Option 4 allows block selection that provides the
best solar orientation for indoor and outdoor living spaces. For people with high mobility
limitations and high and complex support needs, this is considered important.
The house options provide for a different degree of functionality. There are two distinct client
groups: those who require assistance some or all of the time, and those who require no
assistance or aids. To provide a homely feel, the amenities need to be sympathetic to both
user groups. If there is more than one amenity, such as bedrooms and bathrooms, choice is
provided between amenities.
The bedrooms allow for a variety of client needs. Option 4 has two bedrooms that enable
high and complex support needs, as well as a range of other bedrooms for use when less
support is required. These bedrooms are larger than under the other three options and allow
for personal time in the bedrooms. The bedrooms under options 3 and 4 allow for people with
other disabilities, such as autism and psychiatric disorders, but enable privacy through room
placement and noise attenuation. Option 2 provides limited noise attenuation but does not
improve functionality.
The bathrooms had several competing priorities. Different clients have different duty of care
requirements with regard to supervision, access control, alarms and changed work practices.
Approximately half of the eligible population requires support for self-care some or all of the
time. Consequently, the preference is for two bathrooms: one that is highly modified for
support needs, and the other with a capacity for modification but with minimal modifications.
The design approach to options 3 and 4 was to provide bathrooms close to the bedrooms that
best met client needs.
The kitchen under options 3 and 4 is superior to that under option 2. Options 3 and 4 correct the
‘no trap space’ requirements, allowing for a second point of egress. Under options 3 and 4,
functionality is greatly improved for those clients who need assistance with activities for
independent living — the kitchens include adjustable-height benches and pull-out drawers, a
refrigerator that can securely store medication, and other accommodations. Option 2 is adaptable
but the building size does not provide for a similar functionality.
The house options each provide variable access to the clients. Car parking is generally
limited because of block size for all options other than option 4. Access to external areas is
important for clients with mobility assistance requirements. For the children’s house, outdoor
play space is considered important, with option 4 providing a clearly better outcome than
option 3.
The ranking of house options, in descending order, based on the quality criterion is
option 4, option 3, option 2 and option 1.

5.3.3   Timeliness

Timeliness, an intangible, is not normally considered a part of the housing options. However,
the house attributes enable or inhibit a timely management response to carer and client needs.
In the existing provider-centric model, a planned approach to block respite is used.
Contemporary practice indicates a shift towards a client-centric model. This is potentially
likely to increase short-notice demand for respite.
There is an identified need for more short-notice care. Carers might have short-notice needs
for respite care resulting from personal, work or other family relationships. The government

                                                                                               34
           is the provider of last resort and often has to provide emergency accommodation for clients
           when carers are no longer able to cope. Short-notice respite demand is likely to be for both
           day-stay and bed-nights.
           The house needs to be responsive to a diversity of needs. Options 3 and 4 have a balance of
           room types that cater for different needs associated with differences in disability type,
           severity and complexity; family arrangements; individuals; and other factors. A key aspect of
           option 4 is the two large bedrooms that can be reconfigured for complex needs. Options 3
           and 4 both have large storage spaces that enable furniture to be changed based on client
           needs. Due to block size limitations, option 3 does not have built-in furniture to allow rooms
           to be reconfigured. The storage space is used to provide furniture and specialist equipment
           that meets client needs.
           The ranking of house options, in descending order, based on the timeliness criterion is
           option 4, option 3, option 2 and option 1.

           5.3.4    Cost

           The comparative analysis of cost seeks to select an option that provides an enduring service
           to all clients at the lowest possible cost per bed-night. A number of different forecasting
           models can value benefit and cost. Some models assume a purely financial consideration on
           the investment; however, the value of the respite house is not just the house value but the
           value to clients and carers. The costs for each option are included with the designs at
           Appendix F, and a financial study of the options was also conducted (Appendix G). A cost–
           benefit analysis was conducted for the four options (see Appendix A, Table A.10 and
           Appendix C, Section C6).
           Based only on financial return on the property, option 1 is the most viable economic option
           for the next 8.5 years. Approximately 10–15 years of useful life remain in each house; thus
           option 1 would become less optimal around 2023. However, financial considerations not
           included in this option are the risks associated with noncompliance with the DDA, the
           breakdown of major building systems and additional maintenance. Operating costs of the
           respite centre are a critical consideration in the investment. Average annual operating costs
           for the four houses are $582 000 — about one-third of the cost of a new house.
           Finally, the NDIS might have a significant impact and create an alternative future; thus the
           residual capital value and future use of the houses should be considered if the ACT
           Government does not continue to provide centre-based respite services. These options could
           include the government continuing to own but leasing the premises to private providers, or
           selling them to private providers. Options 2 and 3 require the partial or total destruction of
           the residual capital value of the building. Although these buildings have limitations in their
           current functional use, other uses could be possible within the ACT Housing portfolio to save
           some of the value of the buildings.
           The 10-year return on investment time horizon was chosen as a balance of competing interests
           that allowed real choice between the house options. Option 1 (do nothing) has approximately
           10–15 years of marginal46 functional (not economic) life before a need for investment in
           options 3 (new build, same site) or 4 (new build, new site). NDIS implementation, while
           uncertain, is likely to require 10 years before full maturity around 2025, and some form of
           ACT Government centre-based respite will therefore still be required.
           Option 1 (do nothing) is defined as no capital investment and a continuation of current
           operation. Under this option, 1650 bed-nights are provided each year for an operating budget
           of $582 000. This is an average cost of $353 per bed-night. Option 1 is currently marginal
           because the house compliance audit identified that the properties were limited in terms of
           accessibility (Appendix F); National Standards for Disability Services under the National

46
     Marginal functional life but noncompliant with the National Standards for Disability Services around facilities.
                                                                                                                        35
           Disability Agreement are not met;47 and both the likelihood of failure of major building
           systems and the risks of noncompliance with the DDA (which are currently high) will
           increase with time. At the end of 10–15 years, an investment in a new home will be required
           to continue the service.
           Option 2 (renovate) is defined as a minimal capital investment to correct, as far as practical,
           current deficiencies. Under this option, the renovation does not provide for an increase in the
           average number of 1650 bed-nights each year. There is no change to the operating budget of
           $582 000. The cost of the renovation is $687 000 (Appendix G). Option 2 extends the life of
           the building to approximately 2030, lowers the risk of noncompliance with the DDA,
           improves the building fabric but not substantially the functionality, and still does not fully
           meet the National Standards for Disability Services.
           Option 3 (build new on existing site) provides a 40-year solution, with improved quantity and
           quality of respite, but with potential disruption to existing services. Under this option, an
           average of 2106 bed-nights are provided each year because of the increased size of the
           building and improved functionality. The operating budget of $582 000 remains unchanged,
           since energy and water efficiency offset the existing inefficiencies in the smaller building.
           This option requires the demolition of the existing houses, the destruction of any residual
           capital value, and a disruption to services. The capital cost of this option is $1 370 000
           (Appendix G). Option 3 provides the largest possible building on the existing site but has
           some space limitations in the larger bedrooms and living spaces that limit flexibility.
           Option 4 (build new on new site) provides a 40-year solution, with improved quantity and
           quality of respite. Under this option, an average of 2106 bed-nights are provided each year
           because of the increased size of the building and improved functionality. The operating
           budget of $582 000 remains unchanged, since energy and water efficiency, along with
           building orientation, offset the existing inefficiencies in the smaller building. The capital cost
           of this option is $1 580 000 (Appendix G). The house is larger than under option 3, providing
           maximum flexibility. This option allows for continuity of service on the existing site during
           construction. The acquisition of new land for the build could be offset by the disposal of the
           existing respite houses or reallocation within the ACT Housing portfolio. The cost of
           additional day-stay activities at Kese and Teen for options 3 and 4 has not been priced.
           Acknowledging the changing value of money and risks, after 10 years the cost of providing a
           bed-night is reasonably similar, discounting inflationary pressures on cost (Figure 1; and
           Appendix A, Table A.10). Option 1 will continue to provide a bed-night at $353. Option 2
           will always be more expensive as there is no capacity to increase the bed-nights. Option 3 is
           the cheapest option at $341 per bed-night, but does not include the residual capital value of
           the house that needs to be demolished. Option 4 after 10 years provides a bed-night at $352.




47
     National Standards for Disability Services (standards 2.6, 2.10 and 5.2) are not met.
                                                                                                           36
           Figure 1   Option cost analysis

The ranking of house options, in descending order, based on financial efficiency is
option 1 for the next 8 years or option 4 at 10 years, option 3 and option 2.




                                                                                      37
                                     Table 2         Summary of housing options analysis

                                                                         Elouera                                                                   Hughes                                                                     Teen                                                                   Kese
                                        Option 1            Option 2            Option 3           Option 4         Option 1          Option 2         Option 3           Option 4          Option 1          Option 2           Option 3           Option 4         Option 1          Option 2         Option 3           Option 4
                Land size (m2)          876                 876                 876                1331             940               940              940                1156              1056              1056               1056               1230             1033              1033             1033               1108
                Building size (m2)      240.7               240.7               315                493              279.6             279.6            398.5              470               250.5             250.5              432.5              495              231.8             231.8            374                432.5
                Capital cost ($)        0                   662 000             1 209 000          1 585 000        0                 736 000          1 382 000          1 662 000         0                 696 000            1 472 000          1 608 000        0                 632 000          1 417 000          1 478 000
                Cost per square         0                   2749.6              3838               3368.8           0                 2632.5           3468               3353.6            0                 2778               3403.5             3248             0                 2726.5           3789               3490
                metre ($)
                Maintenance             High                Medium              Low                Low              High              Medium           Low                Low               High              Medium             Low                Low              High              Medium           Low                Low
                Replacement             High                Medium              Low                Low              High              Medium           Low                Low               High              Medium             Low                Low              High              Medium           Low                Low
Cost




                                        (10 years)          (10 years)          (40 years)         (40 years)       (10 years)        (10 years)       (40 years)         (40 years)        (10 years)        (10 years)         (40 years)         (40 years)       (10 years)        (10 years)       (40 years)         (40 years)
                Available bed-          1650                1650                2106               2106             1650              1650             2106               2106              1650              1650               2106               2106             1650              1650             2106               2106
                nights
                Available day-          No change           No change           Minor improve-     Minor improve-   No change         No change        Slight increase    Slight increase   No change         No change          + 1000 hours       + 1000 hours     No change         No change        + 1000 hours       + 1000 hours
                stay hours                                                      ments              ments
                Car parking             Partially           Partially           Partially          Compliant        Compliant         Compliant        Compliant          Compliant         Noncompliant      Compliant          Compliant          Compliant        Compliant         Compliant        Compliant          Compliant
                                        compliant           compliant           compliant
                External                Not fully           Minor improve-      Improved           Fully            Not fully         Improved         Improved           Fully             Not fully         Improved           Improved           Fully            Not fully         Improved         Improved           Fully
                accessibility           accessible          ments                                  accessible       accessible                                            accessible        accessible                                              accessible       accessible                                            accessible
                Internal                <50%                50%                 >50%               100%             50%               >50%             100%               100%              >50%              >50%               100%               100%             <50%              <50%             100%               100%
                accessibility
                Bedrooms                Not accessible      One 3.6 × 3.6       Two 4 × 5          Two 5 × 5        One 3 × 4         One 3.6 × 3.6    Two 4 × 5          Two 5 × 5         Two large         No                 One 5 × 5          Two 5 × 5        Poor —            Minor            One 4 × 5          Two 5 × 5
                                                            accessible          accessible         accessible       accessible        accessible       accessible         accessible        accessible        improvement        accessible         accessible       inaccessible      improvements     accessible         accessible
                                                            room                rooms              rooms            room              room             rooms              rooms             rooms                                room               rooms                                               room               rooms
                Kitchen                 Not accessible      Accessible to       Accessible         Accessible       Not accessible    Accessible to    Accessible         Accessible        Not accessible    Accessible to      Accessible         Accessible       Not accessible    No change        Accessible         Accessible
                                                            adaptable                                                                 adaptable                                                               adaptable                                              (functional
                                                            housing                                                                   housing                                                                 housing                                                requirement)
                                                            standards                                                                 standards                                                               standards
                Living areas            Minimum             No improve-         Minimum            Ideal usable     Minimum           No improve-      Improved           Ideal usable      Minimum           No improve-        Improved           Ideal usable     Minimum           No improve-      Improved           Ideal usable
House quality




                                        usable area         ment                usable area        area             usable area       ment             usable area        area              usable area       ment               usable area        area             usable area       ment             usable area        area
                Bathroom                Noncompliant        Minimum             Compliant          Compliant        Noncompliant      Minimum          Compliant          Compliant         Minor             Compliant          Compliant          Compliant        Noncompliant      Minimum          Compliant          Compliant
                                                            compliance                                                                compliance                                            compliance                                                                                 compliance
                                                                                                                                                                                            issues
                Storage                 Inadequate          No                  Minor              Ample            Inadequate        No               Minor              Ample             Inadequate        No improve-        Improved           Ample            Inadequate        No improve-      Minor improve-     Adequate
                                                            improvement         improvement                                           improvement      improvement                                            ment                                                                     ment             ment
                Functionality           Facilities and      Minimum             Accessible;        Fully            Facilities and    Minimum          Fully              Fully             Facilities and    Minimum            Fully              Fully            Facilities and    Minimum          Fully              Fully
                                        circulation not     access              compromised        accessible and   circulation not   access           accessible and     accessible and    circulation not   access             accessible and     accessible and   circulation not   access           accessible and     accessible and
                                        accessible          improvements        laundry            compliant        accessible        improvements     compliant          compliant         accessible        improvements       compliant          compliant        accessible        improvements     compliant          compliant
                                                            to meet code                                                              to meet code                                                            to meet code                                                             to meet code
                Environment             Energy              Improved            Energy             Highly energy    Energy            Improved         Energy             Highly energy     Energy            Improved           Energy             Highly energy    Energy            Improved         Energy             Highly energy
                                        inefficient         efficiency          efficient          efficient        inefficient       efficiency       efficient          efficient         inefficient       efficiency         efficient          efficient        inefficient       efficiency       efficient          efficient
                                        Solar               Solar               Aspect             Ideal solar      Solar             Solar            Aspect             Ideal solar       Solar             Solar              Aspect             Ideal solar      Solar             Solar            Aspect             Ideal solar
                                        efficiency          efficiency          constrained by     aspect and       efficiency        efficiency       constrained by     aspect and        efficiency        efficiency         constrained by     aspect and       efficiency        efficiency       constrained by     aspect and
                                        constrained by      constrained by      site limitations   orientation      constrained by    constrained by   site limitations   orientation       constrained by    constrained by     site limitations   orientation      constrained by    constrained by   site limitations   orientation
                                        building            building                                                building          building                                              building          building                                               building          building
                DDA risk                High                Medium              Medium             Low              High              Medium           Low                Low               High              Medium             Low                Low              High              Medium           Low                Low
                Timeliness              No change           No change           Self-booking;      Self-booking;    No change         No change        Self-booking;      Self-booking;     No change         No change          Self-booking;      Self-booking;    No change         No change        Self-booking;      Self-booking;
                                                                                subject to         subject to                                          subject to         subject to                                             subject to         subject to                                          subject to         subject to
                                                                                availability       availability                                        availability       availability                                           availability       availability                                        availability       availability
                                     DDA = Disability Discrimination Act 1992




                                                                                                                                                                                                                                                                                                                           38
6     Ad d i t i o n a l f e a t u r e s o f r e s p i t e c a r e

          Key points
          To realise the additional capacity needed as the population grows, and to meet the need for
          short-notice care, changes to the existing management arrangements for respite are required.
          Optimisation of centre-based respite care requires the implementation of an integrated solution
          that includes:
          •   new respite houses that provide an additional quantity and appropriate quality
          •   a carer and client management system that defines the relative needs of services users
          •   a self-booking system that is responsive to changing requirements.
          A client management system will assist in programming compatibility of clients based on their
          individual needs, to continue to support a high-quality respite experience and also improve
          occupancy. An impediment to achieving 100% occupancy is compatibility. With an effective
          client management system, when not required, accommodation could be provided at short
          notice for carers of clients who find the block accommodation unsuitable. Short-notice
          availability (1–2 days in advance) could be emailed to compatible clients and bookings made
          through a self-booking system. These initiatives would provide close to peak occupancy.
          The combination of the client and carer information management system and self-booking
          system would also provide empirical evidence of the differences between demand and supply
          and support further management and planning options.

6.1   Introduction
      In addition to the overall structure of future respite care, other aspects of the care experience
      and management will play an important role in developing a complete and effective model
      for ACT respite care. This report looked at some additional features that need to be included
      in models to support the improvement of respite care.

6.2   Respite care support
      Two key supports to management and planning have been identified and are being used in
      other jurisdictions to improve both the efficiency of services and the experience of carers and
      clients: client management systems and self-booking systems.
      A client management system with a carer module allows governments and/or respite care
      managers to understand future demand requirements so that they can respond to changes in a
      timely manner. A client management system is already being developed in the ACT, and the
      addition of a carer module will significantly increase its utility.
      Data can be collected and analysed to provide future profiles for:
      • Individuals — The individual carer profile describes the needs of the carer in terms of the
         support they require over an extended (say, 10-year) period. This will consider the key
         factors affecting the carer and their ability to continue in their support role, including the
         carer’s own disability, health issues, time spent supporting the person with disability,
         support from other family members to assist in care, work circumstances and personal
         choice in balancing lifestyle priorities.
      •       Groups — The group carer profile provides an aggregation of future intentions as a long-
              term planning tool. It is likely to identify trends in needs between the different disability
              groups, and establish compatibility algorithms for the self-booking system between
              groups, based on the complexity and severity of disability, and individual personality and

                                                                                                            39
             preferences. It is anticipated that there would be an annual review, based on carer and
             client surveys of the quantity, quality and timeliness of respite.

         Future demand for respite care is uncertain, but it is almost certain to be greater than present
         levels. Even with 2106 bed-nights and 2000 hours of flexible respite, options 3 and 4 for each
         age group are unlikely to completely meet future need. Better quantification of carer needs is
         required through the development of a carer module on the client information management
         system and a future carer profile. The carer module should focus on the respite support
         required to at least maintain support relationships and, aspirationally, to close the gap in
         wellbeing between carers and non-carers. The future carer profile is linked to the client and
         may extend beyond the current carer to other siblings or informal carers and their potential
         needs, which might be substantially different from those of the current carer. Such a profile
         will enable determination of the exit rate from respite care and, more importantly, the level of
         carer respite required.
         A self-booking system allows carers to book respite care online, both in advance and at short
         notice, to respond to immediate needs48 (see Sections 2.3.1 and 2.3.2). It enables carers to
         make links with a range of providers that meet their needs, and organise respite care more
         flexibly than previously. The self-booking is designed to provide a timely access to services.
         However, to ensure quality of respite care for all service users, an algorithm embedded in the
         booking system should use the compatibility information drawn from the client management
         system. The algorithm is likely to consider such factors as the individual needs and
         preferences of the person with disability requesting accommodation, the other users (to
         determine availability), and the house amenity to support the experience. Such an algorithm
         would be an important feature to support the maximum use of facilities. The amount of self-
         booking available would need to be established through the carer profiles and the client
         information management system. The accommodation would be released a day or two in
         advance and cater for people who need short-notice access.
         Victoria has introduced a range of initiatives over recent years, including a successful online
         service, launched in 2009–10, that allows searches for respite care by need. This highly
         interactive carer and client model49 is a key feature of respite services in Victoria, providing
         self-help in real time.
         Using such a booking model for the various services in the ACT would improve
         responsiveness. It should decrease the unused bed-nights within the ACT service (if a client
         management system had compatibility matching) and potentially provide better space in the
         living areas to allow more flexible respite services. This report considers that online booking
         is a key feature of any future client-centric ACT model.




48
   Carers of people with psychological, neurological or high and complex needs, or multiple siblings, or personal
health issues are often outside current ACT Government planning timeframes.
49
   Respite Victoria (2011). What Is Respite Victoria? www.respitevictoria.org.au
                                                                                                                    40
7     F u t u r e r e s p i t e c a r e s e r vi c e m o d e l s

          Key points
          There are several viable scenarios of future respite care in the ACT, based on carer and client
          needs, ACT Government aims and the likely interaction of these with the proposed National
          Disability Insurance Scheme (NDIS).
          If the NDIS is not implemented, the ACT Government will work with private providers in
          developing improved solutions for respite care in the ACT. In this scenario, although option 1 is
          viable, new facilities will be needed in the long term (2025) as the existing facilities reach the
          end of their useful life. Options 3 and 4 offer the best solution to providing ongoing care.
          If the NDIS is implemented, respite care could be managed wholly by the Australian
          Government and private providers. This scenario is considered unlikely given the ACT
          Government’s role in providing care for people with high and complex disability.
          It is more likely, if the NDIS is implemented, that care will be managed collaboratively by
          private providers, the Australian Government and ACT Government. Unless there is a rapid
          implementation of the NDIS, options 3 and 4 provide the most viable options under both
          futures. If implementation is rapid, phasing the construction of four houses is a risk mitigation
          strategy.

7.1   Introduction
      Models of future respite care in the ACT need to take into account carer needs (Section 2),
      current services (Section 3), national trends (Section 4), and housing options (Section 5),
      which have been examined in the previous sections of this report. In particular, such models
      need to take into account possible policy changes affecting respite care. The proposed
      National Disability Insurance Scheme (NDIS) allows for state and territory governments to
      provide services if they meet the needs of carers and people with disability. However, it also
      encourages private organisations to provide services. Therefore, if the NDIS is implemented,
      it could have a significant impact on ACT services (see Section 4.4). However, regardless of
      the fate of the NDIS, recent reports and client and carer responses to report workshops have
      noted the need for a truly client-centric model for respite care (see Section 2.3) to meet carer
      needs and bring the ACT into line with national and international best practice (see
      Appendix B).
      This report developed scenarios of the future for ACT respite care (see Appendix C,
      Section C7) and the best house and support options for each.

7.2   Alternative futures
      There are three key future drivers in respite care:
      • The carer and client are concerned with the quantity, quality and timeliness of respite.
      •      The ACT Government, as both the funding agency and the operator of the four centre-
             based respite houses, is principally concerned with equitable access, and effective and
             efficient delivery of respite services within the existing budget allocation.
      •      The Australian Government’s proposed NDIS is concerned with improving care for
             people with disability by establishing client-based services, and may alter the ACT
             Government’s role in the provision of centre-based respite.

      The interaction of the three key drivers will potentially significantly alter the respite care
      future, and thus the best choice of house options. Any model of the future has to integrate the
                                                                                                              41
drivers into a common future to identify a house option that best meets the future needs of all
stakeholders.

7.2.1   To 2025

This report modelled the possible interaction of the three key drivers (see Appendix C,
Section C7) to arrive at three viable scenarios for future respite care.
In the first viable scenario, the NDIS is not implemented (potentially due to a failure of
funding, democratic processes such as a federal election, or negotiations with states and
territories), and there is a collaborative relationship between the carers and the ACT
Government. There is acceptance that demand exceeds supply for the four existing respite
centres, and some people do not receive sufficient respite. Measures will therefore be put into
place to address this need. A client information management system will ensure the
appropriate quality of care in respite and the compatibility of users. The system would require
the development of carer profiles to establish the relative need for respite as a result of key
factors (eg age; carer disability; disability type, severity, complexity or compatibility; other
forms of disability support). The quantity of respite is provided by suitable house options,
with option 4 most likely to meet the increasing demand and provide the most flexibility.
In the second viable scenario, the NDIS is implemented, and there is a collaborative
relationship between the carers and the Australian Government (with no ACT Government
involvement). This scenario is considered unlikely because the ACT Government cares for
the majority of people with severe or complex disability, and this is likely to be a continuing
need. However, in this scenario, option 1 is most suitable.
In the third viable scenario, the NDIS is implemented, and there is a collaborative
relationship between the carers, the Australian Government and the ACT Government. The
doubling of the disability budget ensures that a growing number of private providers is
available. With a client management system and booking system, options 3 and 4 are viable
because they have lower bed-night costs, which are likely to be highly competitive with other
providers. The quality of service is likely to be good, and surplus demand is met by others. If
option 1 or 2 is chosen in the shorter term, use of the house is likely but, as the NDIS
matures, demand for ACT Government respite is likely to diminish. If NDIS funding is not
provided at the proposed levels, options 1 and 2 remain viable for longer, but the quantity of
respite provided is lower. Options 3 and 4 allow for several future options, including
government-owned and government-operated respite, government-owned and privately
operated respite, and houses sold to private providers.

7.2.2   2025 and beyond

The two most likely future scenarios at 2025 involve the ACT Government as a service
provider.
Population projections indicate an ageing population (see Appendix A, Figure A.2). Based
purely on population, a fifth respite house is likely to be required for adults.
Subject to carer profiles and individual care plans, the child and teen population might have
sufficient accommodation if the full quantity of bed-nights is available and supplemented by
community providers. This is likely to avoid the need to provide a second respite house for
these age groups. It would be expected that the client management and booking systems
would provide an evidence-based approach to inform allocation.
If the NDIS does not proceed, around 2025, options 1 and 2 will reach the end of their
functional life as respite houses. Although the houses can still be used for accommodation,
they are likely to be marginally effective as respite facilities. Options 1 and 2 are unlikely to
meet community standards, and satisfaction with the facilities is likely to be poor. The low
level of amenity is likely to contribute to a poorer quality experience and may contribute to a

                                                                                               42
      move to alternative, more expensive accommodation support. A capital investment option
      equivalent to options 3 or 4 will be required.
      If the NDIS does proceed, and if the ACT Government is still involved in providing respite
      care, options 3 and 4 are the only viable ones beyond 2025. The lack of one high-needs
      bedroom in option 3 is not considered significant, as private providers will be involved in the
      market and flexibility can be provided from other sources. A potential risk to this model is
      that the Australian Government is likely to provide its own form of client information
      management system and portal for booking of services to connect clients with service
      providers, which might obviate the need for the proposed ACT systems.
      Developing client information management and self-booking systems has two components.
      The first is data capture of client needs — subject to privacy considerations, this can be
      directly transferable to any federally managed system. The second is building the analysis,
      compatibility and booking platforms. An evolutionary approach to this from 2011 to 2025
      will minimise potential wasted effort surrounding the platform.
      Beyond 2025, a respite care expert system should operate if the ACT Government manages
      respite care. It will integrate the statistical and judgmental information. Stakeholder needs are
      met, as follows:
      • Timeliness — A self-booking system (probably web-based) will operate that connects
          carers with service providers. This is likely to cover all government-funded centre-based
          respite.
      •   Quality — The client information management systems will evolve to include
          compatibility requirements with other clients and potentially staff rostering (if important).
          This is designed to support a positive experience of respite. Satisfaction ratings on each
          form of respite experience will be used to improve service. Two feedback mechanisms
          are likely: the first through the self-booking system on the home and service; and the
          second through the client information management system, where preferences or
          compatibility could change over time.
      •   Quantity — The carer profiles will provide a long-term indication of the likely respite
          care needs of each type of carer and person with disability, to establish demand forecasts.
          This is likely to be validated through the self-booking system and respite care exit rates
          (planned and emergency). The self-booking system will record unmet needs. These
          indicators will then validate or improve the care plans and inform investment allocation
          decisions.
      •   Resources — Resource allocation between respite and other disability support services
          will be based on the integrated data sources. The care plans will determine the long-term
          need and the likely time horizon for when a fifth respite house is required. In the short
          term, the ACT Government can buy these services from private providers that are
          targeted to the needs of carers and people with disability. The client management system
          will also flag when respite or other services are available to inform investment decisions.

7.3   Implementing a respite care model
      The implementation of the centre-based respite care model applicable to options 3 and 4 is
      proposed as a broad timeline (Table 3). It is subject to integration with other programs and
      agencies, and government resources. Differences between options 3 and 4 are noted. Any
      new build is likely to be completed towards the end of 2014. A key assumption of this
      timeline is that at least one of the existing respite centres is on a new site, to provide
      continuity of service.




                                                                                                     43
       Table 3       Implementation plan
Year                                 Action                                                  Comment

End 2011       Government consideration of report                    Outcome depends on if, and how many, houses are to
                                                                     be included in 2012–13 budget; if option 4 is available,
                                                                     this should be the first house, to minimise disruption and
                                                                     transition costs
End 2011       Complete upgrade to client information                Project is in progress
               management system
Mid-2012       Include in capital works budget provision for the     Option 4 house is required to minimise the disruption in
               first option 4 house                                  any option 3 house options
20 Oct 2012    ACT election
January 2013   Review National Disability Insurance Scheme           Depending on the risk assessment, one or more of the
               progress and confirm post–ACT election budget         houses could be chosen
March 2013     Procure contractor to build the first one or two
               houses
June 2013      Include provision for remaining two houses in         Mitigation strategy based on outcome of federal election
               capital works budget to commence in early 2014
June 2013      Include provision for development of a self-          Minimalist approach initially, with an evolutionary
               booking system                                        development; allocation of $100 000 in budget;
                                                                     alternatively a service arrangement could be explored
                                                                     with a hotel/airline booking agency
June 2013      Include development of a carer profile in budget.     This is to determine equitable access to the respite
               This may be done inhouse by ACT staff or              services based on carer needs
               outsourced
July 2014      Procure consultant for self-booking system            Could be delayed until after the federal election
July 2014      Procure consultant (if required) for carer profiles   Could be delayed until after the federal election
30 November    Last date for federal election (but may be sooner)
2013
December       Review viability of National Disability Insurance
2013           Scheme post–federal election
December       Include lessons learned from first two houses to
2013           improve last two houses
January 2014   Complete carer profiles                               Initial allocation of days for new respite centres and
                                                                     compatibility
February       Procure contractor for second two houses
2014
March 2014     Complete construction of first two houses
May 2014       Complete self-booking system                          Implementation testing on existing respite houses
December       Complete construction of last two houses
2014
January 2015   Commence operation of new respite housing
Each year      Annual review, validation, improvement of the         This is designed to use current data to develop an expert
2015–20        self-booking system, client information               system; over time, an accurate data set that reflects the
               management system and carer profiles                  environment will be established
2020           Development of an expert system that forecasts        System should be able to draw the relative cost of
               carer needs                                           disability care options




                                                                                                                              44

								
To top