The Policy Challenge of Ageing Carers of People with a Disability

1
The Policy Challenge of Ageing Carers of People
with a Disability

• Christine Bigby
• Associate Professor, School of Social Work and
  Social Policy, LaTrobe University
• Gill Pierce
• Senior Policy Adviser, Carers Victoria

2
Outline

• What are the problems
• Why are they important
• How can they understood
• Diversity of carers situations and needs
• How can needs be met, issues from practice
  research
• Nature of current policies and issues that arise
• Ideas for a way forward

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Problems to be Resolved

• Older parental carers adults for whom care
• Lifelong commitment to family caring
• Support to care as long as able/choose
• Support to remain at home at long as choose
• Preparation and planning for transition
• Replacing parental roles caring for and caring
  about
• Successful aging and right to choice, inclusion
  participation

4
Underlying Causes

• Caring into old age and being survived by adult
  children
• Increased life expectancy adults with
  disabilities
• Demographic bulge
• Housing and support patterns of the past
• Institutions or family care
• Resources have not matched policy visions of more
  normalised life course insufficient
  alternatives to family care
• Continuing unmet need for alternative housing and
  support options 12,500 min estimate, AIHW 2002

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Why are these Pressing Issues

• Generational equity group who did not chose
  institutions
• Reduce anxiety parent, person with disability,
  family
• Avoid trauma of crisis and unplanned transition
  to inappropriate support
• Improve chances of successful transition for
  adults with disabilities
• Maximise use of family capital for long term
  support
• Estimated at least 6,400 parental carers over 65
  (ABS, 2003)
• Increasing numbers as 45-64 yr old parents age
  (est 44,400)
• Need for service system planning

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Diverse Family Situations

• Diversity of situations
• Family constellation other caring
  responsibilities and network of support
• Type of disability
• Adaptation to caring
• Health
• Relationship and attitude to service system (go
  it aloners, reluctant users, tandem carers,
  services in charge Llewellyn et al 2004)
• Relationships of interdependence
• Approach and attitude towards planning
• Involvement of adult in discussion of future
• Experience away from family
• Attitudes to current ideologies
• Family resources available
• Consistently- anxious re future, nature and
  quality of care

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A Continuum of Needs

• Planninglow level info engagement to crisis
  management of transition info and education re
  options-engagement in process, emergency plans -
  informal key person succession, wider informal
  network, life story work, caring for (accom)
  legal- wills- trusts, transition plans
  separation, letting go-being known
• Additional Support to Careno support to
  intensiveno need- low level- mutual support- top
  up- episodic- high level emergency crisis
  transition
• Future Housing and Support Possibilitiesminimal
  drop in support - 24 hour rostered - alone or
  sharedfamily home- other family- independent
  drop in support, shared supported, flexible and
  least restrictive options, opportunities to reach
  potential-skill development - opportunities to
  experiment- exercising choices re future-
  flexibility

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Factors to Take Into Account from Practice
Research

• Poor fit existing system
• no high or urgent needs, may not request support
  or identify as carer need for outreach
• Hard to engage self reliant
• Relationship trust supports engagement and
  change confidence and continuity
• Parents value concrete practical emotional
  support-
• Long term, intermittent, variable
• May engage with multiple systems, interfaces and
  potential pathways
• Fragmented services- each has narrow focus - not
  attuned to broader issues or disability
  perspective , dont see possibilities.
• Multiple foci - complexity
• Family focussed adult work
• Carer, person with a disability, interdependence
  can be conflicting needs
• Engaging with adults with communication and
  cognitive impairments

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Specific Policies for Older Carers

• Federal initiatives
• Dept Health and Aging - Respite initiatives 2
  weeks 4 weeks
• Variable State/Fed agreements re implementation
• FACSIA- respite care of people with intellectual
  disability or psychiatric disability
• Highly targeted - Older carers over 65 yrs and
  specific disability type
• Specific tangible service (respite) rather than
  more intangible and diversified
• No systematic focus on outreach
• No focus re future thinking, planning, decision
  making
• Delivery through NGOs and Carer Respite Centres
• Bypasses other specialist disability services-
  poorly coordinated
• Diverse and fragmented, difficult to navigate
• Inconsistent availability based on local planning

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In Home Support Packages

• Community, Aged Care Disability to supplement
  home care
• HACC, Linkages, Disability specific and Aged Care
  specific
• Diverse, overlapping programs - one family may
  have multiple packages
• Target adult or carer not joint or family focused
• Separate needs poorly coordinated
• Some capacity for relationship building but
  duplicate narrow mandate may not have ongoing
  case management
• Separation of assessment/ planning may focus on
  immediate needs and deter processes of engagement
  and relationship building to support longer term
  planning

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Housing and Support Options

• CSTDA accommodation group homes, hostels,
  supported independant living
• New housing and support initiatives (Housing
  Trusts) allow family contributions to cost of
  ongoing care -shared equity- arms length from
  govt regulations
• Network Building, small scale local community
  parent governed initiatives (Lifeways, PIN)
• Gross shortage of accessible accommodation
  -Lengthy waiting lists
• Selective and Targeted
• Access by those in urgent high need, crisis
• Demand management - hard to proactively plan,
  competition between families, crisis
  relinquishment
• Families with capacity to work on networks and
  combine individual support packages (activist,
  educated, resourceful)
• Creating dual system that increases pool of funds

12
Financial planning and provision

• New Commonwealth Special Disability Trust
  mechanism
• Allows 500,000 in Trust without impact on DSP
• Allows gifting for social security purposes
• Targeted to parents of people with severe
  disabilities
• To provide for future accommodation and care
• Can be established during carers lifetime or via
  Will
• Not geared to low means families
• Promotes use of private resources to complement
  public funded care and housing
• Target numbers unclear- may be a minority
• Missing are mechanism such as person
  responsible or key person successors who replace
  parental caring about

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Overarching Policy Problems

• No population based planning or benchmarks,
• Inadequate growth funding through CSTDA.
• Unmet need overshadows proactive planning
• Absence of useful planning data esp those outside
  services
• Unclear extent of trust applicability- how many
  have funds
• Emphasis on informal/family care, user/family
  pays
• Narrow focus on financial contributions and
  management
• No formal mechanisms for recognising caring
  about, informal role.

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Overarching Policy Problems

• No coordination at government funding or program
  level in context of multiple overlapping support
  packages
• Few mechanisms to enable joint focus where older
  carer and adult in receipt of care packages
• Older carer specific programs - partial rather
  than comprehensive approach to needs, dont
  include prevention and engagement
• No identifiable national program for
  coordination
• to resource and manage interface with more
  generic programs (aged care,disability and carer
  services)

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Possible Directions

• National data
• Family based in home support packages/ blended
  packages
• National population benchmarks for accommodation
  support and strategy to meet unmet demand
• National older carer program - outreach and
  prevention (respite and transition proposed by
  Carers Assoc)
• outreach
• target lower end of needs continuum for support
  and planning
• based on engagement, relationship, info re
  planning
• broker low level support
• referral for high support
• coordination, resource and consult to generic
  programs build on existing connections
• Wider promotion of Disability Trust, reduce
  complexity

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• Engage legal profession in dissemination and
  promotion, (see for eg The Queensland Impaired
  Competence Planning Pilot)
• Expand supply and range of housing options
• Segment waiting lists to ensure non crisis
  capacity
• National dissemination of mechanisms for
  public/private initiatives
• Less restrictive mechanisms than guardianship to
  acknowledge informal roles
• Policy development re future aging in place,
  retirement, access to responsive and
  knowledgeable health and geriatric services to
  enable successful for aging with a disability