Young People In Nursing Homes

National Alliance
Social aspects of long term care and
support

The YPINH Alliance

An alliance of young people and their families, providers and

advocates
Began in 2001 to create change
Campaigned to get young people out of aged care and to
reform the pathways that put them there
Representation in each State/Territory
Focus on policy issues underlying systemic change around
long term care and support issues

Process and Outcomes

Long Term Care and Support

LTCS better seen as an approach than a model?
Key principles:
LTCS must complement and promote citizenship
LTCS must optimise consumer autonomy and control
LTCS must be sustainable and competent
LTCS must be accountable

Interpreting meaning in LTCS

Major process for individuals to
integrate a barrage of expert
advice after acquiring a disability
LTCS managers need to
understand the power of control
and autonomy and the powerful
role of consumers
Too easy to underestimate and
misinterpret consumer interests
by putting them through a
therapeutic filter

Targeting effort in LTCS

Do we know what consumers really want?

Are we limited by design or intent?
Do we deliver LTCS based on our capacity or consumer needs and
interests?
Do we really understand what we do (evidence)?
What do people with MS want from their organisations?
1.
A cure
2.
To talk with others with MS
3.
Detailed information
4.
Specialist services

LTCS programs are not islands

Community context important
People with a disability are shut out and social indicators are
for people with disabilities are grim
Education school completion 30% lower
Employment employment participation 35% lower
Poverty income levels half the national average

Expectation that LTCS programs will deliver where the

community cannot

Continuous Care Pilots

Keeping young people out of aged care

Programs within the COAG Young People in Residential Aged Care
Initiative 36 people with progressive conditions over 2 states
Joining up health, community and disability services
Closely linking clinical and social imperatives
Risk management approach with intensive case coordination
100% success rate
Timing and competence more important than service quantum

Continuous Care Pilots

Keeping young people out of aged care

Key risks:
Carer burnout, dependent children, equipment needs not met, social isolation,
cognitive impairment, unsustainable housing , financial stress
Risk identification:
Was best done collaboratively, and with high value placed on consumers own
frame of reference
Success factors:
Highly skilled workers, prospective planning, consumer involvement, dynamic
review and flexible brokerage funds

Essential LTCS scheme capacities

LTCS schemes should be players in their communities

Undertake capacity building and community development
Utilise a wide range of service interventions
Use assessments wisely and sparingly but invest in
competent lifetime support management
Evaluate/report interventions and outcomes
Decentralise and share provider management