Young People In Nursing Homes National Alliance Social aspects of long term care and support

1. Young People In Nursing Homes National Alliance Social aspects of long term care and support

2. 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 The YPINH Alliance

3. Process and Outcomes

4. 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

5. 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

6. 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? • A cure • To talk with others with MS • Detailed information • Specialist services

7. 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 –

9. 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

10. 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 consumer’s own frame of reference Success factors: • Highly skilled workers, prospective planning, consumer involvement, dynamic review and flexible brokerage funds

11. 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