1. A Study of the Support Coordination Program

2.  The Study Context  Carer profiles  Issues for carers  What will make a difference  Conclusion

3. The Study Context  In 2007 ANGLICARE Sydney began operating 5 Support Coordination programs across Sydney.  Each service provides support to 120 carers per annum – 70 carers with support through a Carer Assistance Package and 50 other carers through information/education and planning.  These programs operate across a large geographic area from the Inner and South West of Sydney to Cumberland Prospect and Nepean. The Cabramatta program is specifically for Culturally and Linguistically Diverse (CALD) clients.

4. The Study Context  Extensive assessment based on entry and exit surveys  Data collection began 2008 and covered 289 cases over a 2 year period.  Generally self administered  Use of the Cummins Personal Well being Index

5.  The Study Context  Carer profiles  Issues for carers  What will make a difference  Conclusion

6. Carer profiles  About half of the carers (53%) were aged between 65 and 74 years. Twenty eight percent were aged 75-84 years, and 20% were aged over 80 years

7. Carer profiles  One in five are over the age of 80  The picture emerging here is one of people caring for their children well beyond what would be usual in society.

8. Carer profiles  The overwhelming majority of ageing parent carers was female (81.5%).  Some 45% of participants were widowed, while 42% were married.  Thirteen percent were either separated or divorced. This demographic profile of the carers in the program points to issues which will be discussed later – the deteriorating health associated with age and the loss of supports, particularly of a partner, among many of these carers.

9. Carer profiles  The vast majority of carers (96%) were living with the person they were looking after – amounting to a 24 hours a day, seven days a week, all year round commitment, sometimes relieved by respite.  Over one third of carers had been caring for more than 40 years.

10.  The Study Context  Carer profiles  Issues for carers  What will make a difference  Conclusion

11. Issues for Carers – Well being  ANGLICARE found that, upon entry, carers in its Support Coordination program have similarly low levels of wellbeing to that found among carers nationally.  While Cummins and Hughes found that carers had a wellbeing score of 58 out of 100, ANGLICARE’s survey resulted in an average score of 57 out of 100

12. Issues for Carers- Life Satisfaction There were high levels of dissatisfaction evidenced around:  Health- (35%, or one in three carers)  Achievement in life -some 70% of carers were either dissatisfied or neutral in relation to what they are achieving in their life.  Finances -almost one in four carers were clearly dissatisfied with their current financial situation, and  Future security - slightly more than one in four carers were dissatisfied in relation to future security

13. Issues for Carers Dissatisfied % Neutral % Satisfied % Your Life as a Whole 23.147.429.5 Your standard of living 12.440.447.2 Your health 35.139.125.8 What you are currently achieving in life 22.946.630.5 Personal relationships 20.228.151.7 How safe you feel 13.329.956.8 Feeling part of the community 20.337.342.4 Your future security 28.537.633.8 Your financial situation 23.846.829.4 Carer’s own housing 12.229.758.2 Care recipient’s housing 18.829.451.8

14. Issues for Carers: Stress The key specific stressors evident among ageing parent carers in the ANGLICARE study included:  Future planning: Upon entry to the program, only one in four carers (25%) indicated that there was a plan in place for the future care of their disabled son/daughter.  Sources of assistance: One in four carers indicated that they did not know where to get help if needed and a further 24% were neutral in relation to answering this question.

15. Issues for Carers - Anxiety  Anxiety about the future: Eight out of ten carers were anxious about the future of their disabled son/daughter if they were unable to provide care. One carer claimed ‘I see no light at the end of the tunnel.’  Need for time out: Some 54% of carers agreed that they needed time out from their caring role.  Conflict and challenging behaviours: Almost two out of five carers (39%) also indicated the presence of conflict with their care recipient.

16. Issues for Carers - Isolation  For the carers who had partners, more than one in four felt that they received no support from their partners - often a reflection of the age, disability and health issues of their spouse.  17% said they receive no support at all from friends,  17% said the same in relation to their family and  just over one in four (25%) considered they received no professional support from outside services.

17. Issues for Carers - Isolation Source Zero Support % Dissatisfied % Neutral % Satisfied % From your partner 27.312.614.046.2 Family 17.519.124.538.9 Friends 16.727.230.425.7 Counsellors/P rofessionals 25.023.824.626.6

18. Issues for Carers – Service Access Ranked Highly* % Currently receive Gap between Perceived need and services received. % Development of transition plan 78.89.469.4 Assist care recipient to pursue goals/interests 75.823.652.2 Help to increase social contacts and maintain friendships for carer 59.09.449.6 Case management 86.742.544.2 Help to increase social contact for person with a disability 75.525.050.5 Life skills for son/daughter 66.817.948.9 Carer counselling 37.15.731.4 Community care services 64.335.928.4 Carer education and training 32.75.727.0 Respite 73.953.320.6

19.  The Study Context  Carer profiles  Issues for carers  What will make a difference  Conclusion

20. What makes a difference? - Specific Carer programs  some 90% of ageing parent carers now received case management, compared with only one in ten carers on entry to the program.  There was a three fold increase in the number of carers who were able to increase their social contacts and maintain them.  One in four carers received counselling over the life of the program compared with one in twenty on entry.

21. What makes a difference?- Specific Carer programs  Satisfaction with family support had increased from 38% upon entry to 48% during the program  Satisfaction with support received from friends and counsellors/professionals had also increased from 25% to 43% and from 25% to 41% respectively  For the person with a disability there was also a significant improvement in service access, with a doubling of the number of people with a disability being able to pursue their own goals and interests and increasing their social contact.

22. What makes a difference?- Planning  Research suggests that the introduction of a permanency or transition plan can reduce the anxiety that is experienced by both adults with an intellectual disability and their ageing parent carers, enabling them to “live well now” (Cartwright and Parker, 2004).  Indeed, the absence of a plan in the event of an ageing parent carer’s death or incapacity may result in a “crisis, rather than a careful transition to planned and sustainable alternative care arrangements” (Bigby and Johnson, 1995).

23. What makes a difference?- Accommodation options  There is insufficient suitable supported accommodation available, leading to families being unable to obtain such accommodation when it is needed or being unable to obtain it at all  Apart from the lack of stock there are issues about the quality and appropriateness of various accommodation models.  There is no doubt that a ‘one size fits all’ approach does not work – since it does not take into account the range and complexity of individual contexts.

24. What makes a difference?- Being outcomes focused. Less stress and anxietyGreater life satisfactionMore ConnectedImproved service access Transition Planning in place

25.  The Study Context  Carer profiles  Issues for carers  What will make a difference  Conclusion

26. Conclusion Ageing parent carers are stoic, determined, exhausted and not adequately supported by the current system. They exhibit significant levels of stress, isolation and disconnection from social and community support networks which is only periodically, and not sufficiently, relieved by respite. Their well being and health is frequently compromised yet they maintain their caring role in the face of often insurmountable barriers. They are both caring and careworn.

27. Conclusion It is imperative that governments at both a state and federal level establish integrated, holistic, flexible finding models and intensive case management which also take into account long term supported accommodation options. Without such a policy direction, the future of ageing parent carers and their sons/daughters with a disability is fraught with risks of exhaustion, disconnection, social isolation and significantly reduced well-being.