ࡱ> VXQRSTU7 FbjbjUU 17|7|μwl|||8|D<}4IL|"PIRIRIRIRIRIRI$L =NpvIvININNN^PINPINNL$$,3p x|p),3$I0I): NNN,3N  Australian Womens Coalition THE CARING SANDWICH CARING FOR YOUNG AND OLD THE PRICE WOMEN PAY RESEARCH PROJECT REPORT October 2005 Elizabeth Bennett, Research Officer, Australian Womens Coalition Executive Summary The aim of this research project was to investigate and report on the needs (met and unmet) of sandwich generation women (i.e., women who have dependent children and caring responsibilities for other family/extended family members) and older women carers. A comprehensive survey of sandwich generation and older women carers, and a public forum incorporating a number of small focus group workshops were used to gather quantitative and qualitative data. The over-riding finding of the research was that sandwich generation women and older women carers are in need of practical, family based support and care for themselves. Further, the research demonstrated that these needs would best be met by a combination of strategies/initiatives including: providing carers with more opportunities to be listened to and acknowledged for their caring roles both within families and outside of their families; educating families and communities about the demands of caring and spreading the caring responsibilities and duties more equitably within families; building the capacity of families and communities to more adequately and equitably cater for family caring responsibilities; providing families with more diverse types of time out options (including appropriate community based activities) on a regular (up to daily) basis so that carers can have regular, amounts of normal time out; providing more domestic help for carers tailored to their particular family needs; providing more services to carers where they are based i.e., in their homes and immediate neighbourhoods and not in widespread or distant community centres; increasing the financial assistance made available to carers and increasing the number of services for carers; providing greater assistance with transport for family/extended family members being cared for; providing a greater range of appropriate community activities/services that both the person(s) being cared for and the carer(s) are happy for the persons(s) being cared for to attend on a regular basis. The Australian Womens Coalition would welcome the opportunity to do more research in this area, particularly with respect to further analysing and prioritising the needs of sandwich generation women and older women carers, and in developing and helping to implement specific strategies to address their needs from a range of angles. This may involve: further work with sandwich generation women and older women carers in analysing and prioritising their needs; researching and drawing on leading practice in this area both within Australia and overseas; developing and promoting appropriate family and community initiatives in partnership with community and government agencies aimed at providing sandwich generation women and older women carers with relevant capacity building resources and practical, appropriate and affordable support; undertaking an educative role in partnership with sandwich generation and older women carer representatives, and agencies working in this and related fields, to promote the importance, cost and practical implications of complex caring responsibilities to families, communities, employers and government; advocating for and supporting non-government and government initiatives that address (or help to address) these needs and thereby advance the status of sandwich generation and older women carers. Background The aim of this research project was to investigate and report on the needs (met and unmet) of sandwich generation women (i.e., women who have dependent children and caring responsibilities for other family/extended family members) and older women carers. This research was undertaken in response to the needs of these women being brought to AWC by several member organizations - in particular, Council on the Ageing and the National Council of Jewish Women of Australia - and because of the growing public awareness/concern for women in these groups. In addition, as part of AWCs contractual obligation to the Office for Women, AWC was required to research and report on an issue of relevance to the women of Australia and contribute to OFWs policy development in this area. This research project has served both of these important purposes. Terms of Reference The initial terms of reference for this research project are attached at Appendix A. During the conduct of the project these terms of reference were modified in the following respects and for the following reasons: Initially the general aim of the research project was to identify the extent to which the needs of sandwich generation women and older women carers are met by HACC services. However, very early on in the process it became clear that the needs (met and unmet) of sandwich generation women and older women carers are much broader than the scope of HACC services and so the research investigation and analysis was broadened accordingly. Another initial and associated aim of the research project was to assess via usage and other statistics the accessibility and adequacy of HACC services for sandwich generation women and older women carers. However, as per 3(a) above it became clear early on in the research that the accessibility and adequacy of HACC services is only one issue or only one aspect of a range of issues relating to the met or unmet needs of sandwich generation women and older women carers. Consequently, this aspect of the initial terms of reference was not pursued. In its place the research looked more broadly at different types of support and services that do or do not meet the needs of sandwich generation women and older women carers. The initial terms of reference proposed using email focus groups and a public forum to gather quantitative data and qualitative input from sandwich generation women and older women carers. So that as many sandwich generation women and older women carers as possible could participate in the research project the email focus groups were replaced with widespread invitations to individuals and groups of women to complete a comprehensive survey and to return it either individually or collectively via whatever means was most convenient to the respondents by email, fax or post. The public forum went ahead as planned (Melbourne 7 June 2005) and involved a number of small workshops. These modifications to the initial terms of reference meant that the research methodology evolved into a more appropriate approach to the women whose input was being targeted and the input and findings were superior in quality as a result. Methodology The research project involved a two fold approach: a. a comprehensive survey was distributed widely to sandwich generation women and older women carers (Appendix B). It was based on the survey used by the National Council of Jewish Women of Australia in their project: Superwomen: A Contextual Study of Jewish Sandwich Generation Women Balancing Intergenerational Family Responsibilities in Multicultural Australia; and b. a public forum incorporating a number of small workshops was held in Melbourne on 7 June 2005. (Appendix C). The comprehensive survey was distributed via AWCs member organisations and their extensive networks to a huge range of women and womens groups. AWCs member organisations at the time of undertaking this research project were: Aboriginal Legal Rights Movement Inc Australian Church Women Australian Federation of Medical Women Inc Catholic Womens League Australia Inc Conflict Resolving Womens Network Australia Inc COTA National Seniors Guides Australia Inc Muslim Womens National Network of Australia National Council of Jewish Women of Australia National Council of Women of Australia Inc Pan Pacific and South East Asia Womens Association of Australia Inc Salvation Army Soroptomist International UNIFEM Australia Inc Zonta International District 24 Given the diversity of AWCs membership it is clear that the womens groups and women to whom the survey was distributed and who responded to the survey was very broad and varied. Repeat distribution and reminders were used to encourage as many survey returns as possible. Distribution was not based on a certain number of surveys being distributed and a certain number/percentage of returns anticipated. The results of the survey constitute the main findings of this research report and are documented in 5. below. The public forum which was held in Melbourne on 7 June 2005 involved an educative, thought provoking component with key note speakers such as Don Edgar and Susan Feldman stimulating discussion on a range of caring issues, and AWCs Research Officer, Elizabeth Bennett, providing an interim report on the research project findings to that point, as well as a number of small workshops which were used to gather qualitative data from the sandwich generation women and older women carers present. The qualitative data from the public forum is attached at Appendix D. The main trends emerging from this data has been incorporated into the main findings of the research report (see 5. below).  Research Findings Geographical location of respondents 149 surveys were returned, incorporating some from each state and territory of Australia. 23 respondents did not specify in which state/territory they lived. State/TerritoryNumber ReturnedVictoria23New South Wales42Tasmania14South Australia12Western Australia13Northern Territory1Queensland15Australian Capital Territory6Sub Total126Unspecified23TOTAL149 Country of birth 114 respondents (76.5%) replied to the question in which country where you born?. Of these respondents 69% were born in Australia and 12% were born in the United Kingdom. The remaining 19% were born in other countries including: Fiji Philippines Poland New Zealand Greece Italy Malaysia Egypt United States of America Germany Hungary South Africa Languages spoken at home The vast majority of respondents reported speaking only English at home. 21 respondents (16%) reported speaking other languages as well. These included: French German Arabic Hindi Urdu Italian Maltese Cantonese Greek Filipino Polish Turkish Hungarian Age brackets 139 respondents (93%) indicated which age bracket they were in. 21% of these respondents reported being in the 60-64 year old age bracket, 17% reported being in the 50-54 year old age bracket, and 13.5% reported being in the 45-49 year old age bracket. The others were spread between the 30-34 year old age bracket through to the 80-84 year old age bracket. Age BracketNumber of RespondentsUnder 30030-34835-39740-441345-491950-542455-591660-642965-691070-741275-79880-84385-89090 and over0 Caring Responsibilities All respondents replied to the question asking who they cared for. Those mostly commonly cared for by respondents (in order of highest-lowest reporting) were: Husband/partner living in same home 鱨վ living in same home Parents not living in the same home 鱨վ not living in the same home Grandchildren not living in the same home The vast majority indicated that they cared for more than one person, most commonly children living in the same home and a husband/partner living in the same home. Other common combinations of those cared for included children, husband/partner, parents and/or grandchildren either living or not living in the same home. These findings were consistent with the feedback from the public forum workshop focus groups. Interestingly, significantly more respondents reported caring for parents either living or not living in the same home compared to grandchildren either living or not living in the same home or parents in law either living or not living in the same home. In addition, more respondents reported caring for other relatives and/or friends than parents in law either living or not living in the same home. These findings were also consistent with the feedback from the public forum workshop focus groups. Kind(s) of Care Respondents were asked to indicate from the following list what kind(s) of care they provide: emotional support financial accommodation medical personal care housework and meals shopping/errands transport legal company, social support minding (child minding, parent sitting etc). The vast majority of respondents indicated that they provided up to 7-8 of these different kinds of care. Participants in the public forum workshop focus groups reported similarly. In order of highest-lowest reporting the most commonly provided kinds of care were: emotional support (88.5%) housework and meals (81%) shopping and errands (79%) company, social support (76.5%) transport (74.5%) 68% of respondents said they were the prime carer. Time Spent Caring 138 respondents (92.5%) answered the question approximately how many hours a week do you spend caring? One third of respondents said full time or 24 hours a day, 7 days a week (=168hrs). Only 10 respondents (7%) said the number of hours spent caring varied or was occasional. The remaining respondents reported a huge range of regular hours spent caring. Interestingly, most respondents were very specific about the number of hours and had clearly put significant thought into calculating them. Number of hours spent caringNumber of respondents2431435265718110101541611812072412532823043524214514815056027228028419031121120212811303133215011582168 (i.e., 24hrs/day, 7 days/week)46Varied/occasional10 Caring Help from Other Family Members 95% of respondents answered the question do other family members assist you with your caring responsibilities?. 64% of these respondents said that other family members provide some help, although 28.5% of these said the assistance was a little and/or occasionally. This left 36% of respondents to this question saying that other family members provided not much or hardly ever assistance. Help from Other Individuals/Agencies All respondents reported self funding the care they provide (both financially and in kind) to a greater or lesser extent. Those who reported receiving additional support from other individuals and/or agencies indicated that most external help came from family and friends (35.5%), followed by government support - including HACC services (25.5%), and community networks including church, cultural groups etc (22%). Impact of Caring Most respondents reported that their caring responsibilities limited their employment and/or income earning opportunities and their capacity to do other things (eg, have holidays, regular sporting/hobby commitments etc). This feedback was further substantiated by the qualitative input collated at the public forum workshops. Many reported tailoring/limiting their work and other arrangements to fit around their caring responsibilities. In some cases this meant going from fulltime to part-time work or giving up work altogether so that caring responsibilities could be fulfilled. 113 of the 149 respondents (76%) answered the question do you think your caring responsibilities have or will have a negative impact on you financially long term?. Of these respondents, 63% said yes, 29% said no and 8% were unsure. The 8% that were unsure were primarily unsure because they didnt know how long their caring responsibilities would continue for and what form they make take over time. Assistance Required All respondents answered the question what assistance do you need to help carry out your caring responsibilities? Most respondents listed more than one kind of assistance required. The most commonly listed assistance required was time out (44%) followed by financial support (23%), home help/maintenance (20%), and then appropriate community activities for the person(s) being cared for (13%). Both in the space provided for respondents to write comments and in the qualitative input from the public forum workshops it was made clear that by time out the sandwich generation and older women carers meant regular (daily or every couple of days) time to do ordinary things (like go shopping, have some time to themselves) etc rather than big blocks of time and/or respite care. Tied in with the need for time out were three other clearly identified needs. In most cases these needs were inseparable from time out. They were: due recognition by families, friends, communities, the general public and governments of the caring role being undertaken and a demonstrable appreciation of the demands and sacrifices involved, the need for other family members to assist on a regular (daily, every few days or weekly) basis with the caring responsibilities; and provision of time out in a form suitable to both the carer and the person(s) being cared for. The need for financial support was closely linked to what would be done with increased financial support and both in the space provided for respondents to write comments and in the qualitative input from the public forum workshops it was clear that increased financial support would be most used for home maintenance type services and related practical things such as appropriate fee for service community/recreation activities, transport for the person(s) being cared for etc. It was clear from both the comments on the survey forms and from the qualitative input that most sandwich generation women and older women carers saw their caring responsibilities as being largely personal, private, family matters and that what they most wanted was practical support from within the family, or practical support that would assist the family members involved in caring. They did not generally express a desire for external, impersonal, service based assistance or support. Conclusions and Recommendations Based on an analysis of the survey responses and the qualitative input from the public forum workshops it is clear that sandwich generation women and older women carers are in need of practical, family based support and care for themselves, and that these needs would best be met via a combination of strategies/initiatives including: providing carers with more opportunities to be listened to and acknowledged for their caring roles both within families and outside of their families; educating families and communities about the demands of caring and spreading the caring responsibilities and duties more equitably within families; building the capacity of families and communities to more adequately and equitably cater for family caring responsibilities; providing families with more diverse types of time out options (including appropriate community based activities) on a regular (up to daily) basis so that carers can have regular, amounts of normal time out; providing more domestic help for carers tailored to their particular family needs; providing more services to carers where they are based i.e., in their homes and immediate neighbourhoods and not in widespread or distant community centres; increasing the financial assistance made available to carers and increasing the number of services for carers; providing greater assistance with transport for family/extended family members being cared for; providing a greater range of appropriate community activities/services that both the person(s) being cared for and the carer(s) are happy for the persons(s) being cared for to attend on a regular basis. 7. Where To From Here? The Australian Womens Coalition would welcome the opportunity to do more research in this area, particularly with respect to further analysing and prioritising the needs of sandwich generation women and older women carers, and in developing and helping to implement specific strategies to address their needs from a range of angles. This may involve: further work with sandwich generation women and older women carers in analysing and prioritising their needs; researching and drawing on leading practice in this area both within Australia and overseas; developing and promoting appropriate family and community initiatives in partnership with community and government agencies aimed at providing sandwich generation women and older women carers with relevant capacity building resources and practical, appropriate and affordable support; undertaking an educative role in partnership with sandwich generation and older women carer representatives, and agencies working in this and related fields, to promote the importance, cost and practical implications of complex caring responsibilities to families, communities, employers and government; advocating for and supporting non-government and government initiatives that address (or help to address) these needs and thereby advance the status of sandwich generation and older women carers. Elizabeth Bennett Research Officer Australian Womens Coalition 10 October 2005 Appendix A POLICY RESEARCH GUIDELINES National Womens Secretariats Policy Research Report 2004-05 1. TOPIC A snapshot of the accessibility and adequacy of HACC services for sandwich* generation women and older women carers. AIM What is the overall aim of the policy research? The aim is to identify via email focus groups and a public forum the extent to which HACC services are accessed by and meet the needs (or not) of sandwich generation women and older women carers. The secondary aim is to put the findings of these consultations in a national context by taking into account HACC access and usage information/statistics from the Australian Bureau of Statistics, the Productivity Commission, and relevant state/territory health and community care organisations. A number of conclusions and recommendations regarding the accessibility and adequacy of HACC services as they relate to sandwich generation women and older women carers in general will be made. 3. OBJECTIVES What are the objectives of the research? The objectives of the research are: to enable sandwich generation women and older women carers with the opportunity to highlight issues of concern to do with the accessibility and adequacy of HACC services; to put the issues raised via the email focus groups and public forum in a national context and draw conclusions about the overall accessibility and adequacy of HACC services for these two groups of women; to highlight in particular any additional issues for culturally and linguistically diverse sandwich generation women and older women carers; and to draw conclusions and make recommendations as to how the issues raised may be addressed. 4. THEORETICAL PERSPECTIVE Whose expert work/ideas will you be drawing on when shaping your research? The main source of information will be the sandwich generation women and older women carers themselves. It is anticipated that the email focus groups may involve up to 120 women, and the public forum a further 40-50 women. The expert work that will be drawn on in the course of this project will include statistics from the Australian Bureau of Statistics (ABS) regarding the number of sandwich generation women and older women carers, their needs, the HACC (and related) services they currently access, and the projected growth in sandwich generation women and older women carers. The research will also draw on recent reviews of HACC services in different states/territories and related research eg, the Community Care Coalition (NSW), the Auditor Generals Report Performance Audit, Home Care Service (NSW), and the Australian Government Productivity Commission Report etc. And finally, the research will also incorporate the findings of other relevant research such as the NCJWA report Superwomen: A Contextual Study of Jewish Sandwich Generation Women Balancing Intergenerational Family Responsibilities in Multicultural Australia. 5. RESEARCH METHOD What will your source of data and information be? As above. The research method will involve email focus groups, a public forum and a literature/statistical review. 6. DISCUSSION The research is expected to show that many sandwich generation women and older women have a range of issues to do with the accessibility and adequacy of HACC services and that this is the case for a number of reasons including: many sandwich generation and older women carers are unaware of the existence of HACC services, the eligibility criteria and/or how to access the services; the accessibility and availability of HACC services is fragmented, inconsistent and in some cases inadequate; that even where HACC services are accessible and adequate they are often not utilised to their fullest extent by women in these groups for a range of reasons (some of them linguistically and/or culturally based); that HACC services could be made more accessible and adequate partly via the funding of additional HACC services and partly via more innovative ways of delivering HACC services. The AWC research may be limited to some extent by the availability of relevant state/territory/national information/statistics, and the capacity of AWC member organisations to reach a broad based sample of sandwich generation and older women carers, particularly those from culturally and linguistically diverse backgrounds. 7. CONCLUSION and RECOMMENDATIONS It is expected that AWCs research will demonstrate that sandwich generation and older women carers have a range of unmet HACC needs; show that the HACC needs of these two groups are unmet for a range of reasons (some of them linguistically and culturally based); conclude that the number of women with these unmet needs is increasing as a result of changing demographics and the declining funding, availability, accessibility and/or adequacy of HACC services; recommend that HACC funding be increased, that the range and number of HACC services available to these groups of women be increased, and that the way(s) in which HACC services are delivered to these women be more innovative and have as a major focus capacity building. 8. TIME FRAME It is anticipated that the AWC research project will be completed by the end of June 2005 following the conduct of the email focus groups in April/May and the public forum on 7 June, 2005. *Sandwich generation women for the purpose of this project are defined as those women who have both dependent children and caring responsibilities of older and/or other family (including extended family) members. Appendix B  Australian Womens Coalition THE CARING SANDWICH Caring for Young and Old The Price Women Pay Questionnaire The Australian Womens Coalition (AWC) is canvassing the views of sandwich generation women (i.e., women who have dependent children and caring responsibilities for other family members as well including extended family) and older women carers. AWC is undertaking this research with a view to evaluating the degree to which the needs of these women are met by HACC and other services, and the ways in which their needs may be better met eg via other/different/new services and/or a range of capacity building initiatives. The input of as many sandwich generation women and older women carers as possible will make this research more valuable. It would be greatly appreciated if you could complete this questionnaire and return it, and/or copy it and pass it on to other women carers. Thanks in anticipation Elizabeth Bennett Project Officer QuestionDetailsResponse1In which state/territory in Australia do you live?2In which country where you born?3Other than English, what other language(s) is spoken at home?4Age Bracket Please tick the appropriate age under 30303435-3940-4445-4950-5455-5960-6465-6970-7475-7980-8485-8990 and over5Describe your family caring responsibilities  6Who do you care for? Please state yes or no to the following:A鱨վ living at homeB鱨վ not living in your homeCParents living in your homeDParents not living in your homeEParents-in-law living in your homeFParents-in-law not living in your homeGOther family members living in your homeHOther family members not living in your homeIGrandchildren living in your homeJGrandchildren not living in your homeKHusband/Partner living in your homeLHusband/Partner not living in your homeMOther (e.g. elderly friend/relative) Please specify who they are and whether they live with you and if not what kind of accommodation do they have7 What kind of care do you provide?  AEmotional supportBFinancialCAccommodationDMedicalEPersonal careFHousework and mealsGShopping/errandsHTransportILegalJCompany, social supportKMinding (child minding, parent sitting)8 Are you the prime carer (answer yes or no)  9Approximately how many hours a week do you care for family/extended family members?10Do other family members assist with your caring responsibilities (answer yes or no) If yes, in what ways/s do they help?  11 What sort of support do you get from other individuals and/or agencies? Please specify  ASelf-funded helpeg for personal duties, house keeping/cleaning, gardening, etc  BGovernment supporteg HAAC services (please list), community nursing, homecare, etcCFriendsDCommunity networks (including church, cultural groups, etc)ENeighboursFother (please specify12Do your caring responsibilities limit your employment and/or income earning opportunities (please respond yes or no) If yes, in what way/s?  13 ADo you think your caring responsibilities have or will have a negative impact on you financially long term? (please respond yes or no)BIf yes, in what ways? 14 ADo your caring responsibilities limit your capacity to do other thingseg, study, sport, hobbies, holidays, have guests etc. State yes or no BIf yes, please specify 15Are you aware of Government funding and/or services that you may be eligible for to assist you in your caring role? State yes or no 16 AHave you made attempts to access Government funding and/or support services to assist you in your caring role? Sate yes or noBIf yes, please state what has been the outcome of your attempts  17 AAre you aware of any community groups offering support in your local community? State yes or no BIf yes, please specify the group and the service they offer 18What assistance do you need to help carry out your caring responsibilities? Please list by typeeg. Time out, financial support, particular home help services, community activity groups for you and/or the individual you care for?  19 Are there any other issues you would like to raise or suggestions, recommendations for carers or whole of community services and support?  20.What are your sources of financial support (please tick)? Sources of financial support AIncome from paid employmentBFinancial support from partnerCFinancial support from other family member(s)DIncome from superannuationEIncome from investmentsF Government financial assistance* (Please list) GOther (please specify and list) 21What is your employment status (please tick)?  AIn paid employment full timeBIn paid employment part timeCIn paid employment casualDSelf employedEOn unpaid leave from paid employmentFNot in paid employmentGPerforming voluntary unpaid community workHOther (please specify  22 What is your family income bracket (please tick)? Response to this question is voluntary but the information is extremely important for some areas of our research so your support would be valued. All responses in this survey are confidential Please tick the range for the family income bracket ALess than $6000 per annumB$6,001-$20,000 p.a.C$20, 001 - $40,000 p.a.D$41,001 - $50,000 p.a.E$51,001 - $60,000 p.a.F$61,001 - $70,000 p.a.G$70, 001 - $80,000 p.a.H$80,001 - $90,000 p.a.I$90,001 - $100,000 p.a.J$100,001 - $150,000 p.a.KMore than $150,000 p.a. Your assistance in completing this survey is very much appreciated. Please return the completed form to Elizabeth Bennett by 30 June 2005 by email:  HYPERLINK "mailto:Elizabeth.Bennett@netspeed.com.au" Elizabeth.Bennett@netspeed.com.au or by fax to: 02 6241 4474 Appendix C The Caring Sandwich Forum Program 7th June 2005 Australian Womens Coalition 9am Judith Donnelly, representing Senator Kay Patterson Minister for FACS, & Minister Assisting the Prime Minister for Women's Issues will open the forum Welcome and House Keeping-President Sue Conde From 9.30am to 10.15am The Keynote Speaker Professor Don Edgar will cover the demographic trends, discuss the fact that there is no such thing as a typical family, identify the diversity of needs for carers and raise awareness of the need for capacity building initiatives to allow carers to feel less isolated and more connected to society. From 10.15.am to 10.45am The AWC Project and Research Officer, Elizabeth Bennett will set the scene for the project, give some indication of the collated data from our surveys and indicate the emerging trends and specify some of the issues that she would like to see discussed in the workshops during the day 10.45 to 11am Morning TEA From 11.15 to 12.00 The first set of workshops will focus on the issues raised by the morning speakers From 12Noon to 12.45 am Kerry Flanagan, Head of the Federal Office for Women will outline her departments perspective on Carers now and their plans and directions for the future. Kerry will be looking for input from the participants during the workshops to identify the gaps that exist from Government, Corporate and Community perspectives. Kerry Flanagan will be bringing some key personnel from her policy division to facilitate some of the workshops Lunch 12.45pm to 1.30am Lunch 1.30pm to 2.15 Dr. Susan Feldman from Victoria University will focus on some of the results from the Jewish Carers research project and explain the connections between this specifically directed research and how some of the findings have direct and indirect application to the wider Australian society. Specifically we would be asking Susan to address the following three questions: What do women as carers really need? What social gaps and support were identified in the Jewish womens research program that could have direct application to the wider Australian Society What can local, regional or national communities do to be creative in meetings the identified existing and emerging needs of women as carers. 2.15 to 3pm Workshops to continue discussions from the morning and to specifically discuss the issues and questions raised by Dr Feldman to 3.15pm afternoon tea 3.15 to 4pm Feedback, reports and recommendations from the workshops 4.00 to 4.30 Closure and Summary President Sue Conde Appendix D Report from small workshop groups at the Sandwich Generation Forum in Melbourne 7th June 2005 Session 1Questions framed by Elizabeth Bennett Facilitator GroupQuestionsSuggested OutcomesElizabeth Bennett1. What specifically do people need in the way of support in the caring role?Emotional help from family and friends (Can you create emotional support if there is none or not much available)? Access to resources/advice/help as needed- to fix via different mediums such as Internet, Help Lines, Chat group or E-chat groups Someone to listen-not necessarily to fix-to allow myself to be heard Time out and time to do research Access to services/resources and blocks of time Information providers bring information to where the carer is-to the home, workplace, etc Less geographical boundaries on service provision-less red tape More local, regional and state integrationMaria Bohan1. What specifically do people need in the way of support in the caring role?Family friendly work environment Work flexibility Volunteer support Family support In formation-whats available-especially for rural women and NESB Financial advice and support Life after caring-transition-recognition-support-grieving support- especially after loss of loved ones and change of lifestyle-links to community Sheila Byard1. What specifically do people need in the way of support in the caring role?1. Differences between State, Federal and Local funded schemes are not well understood 2. Rural areas and some CALD women further disadvantaged-provide multi-lingual information Sheila Byard2. Services-Capacity Building-Community Strengthening-Family StrengtheningWhat do corporate organisations do? Document the value of mothers as carers Review or evaluation of packages+ partnerships for care Noted that there is information in the latest Federal Budget on this issue: This will not be means tested where grandparents have custody- can access government assisted child care up to 50 hours per week-could get 100% of fee Other provisions where they are caring for some numbers of hours 5. We need to affirm the cultural primacy of family acceptance of responsibility for care both for immigrant and the main community 6. Encouraging a culture of care even among those who have no dependents- by working with firms, school education, community organizations: Respect and understanding across the community. 1.Not means tested where grandparents have custody- can access government assisted child care up to 50 hours per week-could get 100% of fee 2. Where they are caring for some numbers of hours 3. There should not be so much emphasis on what governments will and should do-family strengthening needs to be about a public awareness campaign to get people to attend to their own families-caring about not just being a carer for 4. Encouraging a culture of care even among those who have no dependents-often dispersed carers Maria Bohan2. Services-Capacity Building-Community Strengthening-Family StrengtheningA. Capacity Building Tax deductibility for childcare and other caring such as aged persons, people with disability, etc The emotional side of caring and living is important Education for GPs about resources Education for lawyers and social workers Relationship, family training-ring your own grandparents Services for carers should be free Needs a whole of government approach Governments funds silos? B. Community Strengthening Supporting access to the internet Computers in GP clinics Using one another by sharing ideas C. Family Strengthening 1. Educate about caring 2. The human side of caring needs to be valuedElizabeth Bennett2. Services-Capacity Building-Community Strengthening-Family Strengthening1. Family meetings, $ for more family members. (spreading the cost0 2. Power of attorney-easier access to $ etc (pre-emptive)-Medical treatment 3. Foster joint caring responsibilities 4. Flexible work practices- lists of jobs-who in family will do what caring duties 5. Open, early talking about the future and family caring 6. Family facilitators-care for the whole family, could come through GPs, home help-trained to identify carer needs and refer on 7. Church and community links 8. Emergency contacts to meet emergency needs-contacts living nearby Elizabeth Bennett3. Community Resources-Whats needed?1. Step down/in between care/places post acute hospital care 2. Safe secure accommodation for the mentally ill that are not in the prison system 3. Care for people whose families cant or wont care for them 4. Day care centres-with real, interesting activities for older people and for children 5. Community buses/assisted transport 6. Libraries-large print books, audio books-better physical access-access to information about caring resources 7. Shared information at different centres- information about caring-resources for older people at child care centres and vice versa 8. Knowledge about caring organisations who provide relief care for carers 9. Raising the training qualification for relief carers so that carers are confident to leave their loved onesSheila Byard3. Community Resources-Whats needed?Whats good now 1. Hospices andpalliative care 'in place' in some states and regions 2. Palliative care in place in both funded hostels and nursing homes 3. There are various other servicesbut many people have no idea what they are let alone how to access them 4. Visiting district nurses for help with home care 5. Home visit where available by GP in some areas 6. Family support services are crucial-there needs to be more residential visits and help lines available 2. What are the gaps? 1. Care for sick children for working parents 2. More flexible carer relief to allow short absence for shopping 3. Need better advice for carers (ADCAT is available but needs to be more visible) 4. Continuity of care issues- home visiting teams do not carry patient history with them e.g. mental health service teams - need to better links across services are crucial for parents of small children 5. One member of the group spoke of her mother who had paid private health cover for 60 years but still left on a trolley for 14 months 6. Special needs for carers of intellectually impaired 7. Unfortunate competition between more public money for high care patients results in less funds for low care 8. Also distance is a problem with service provision - often individual carers are far from each other. 3. Culturally appropriate resources for Australian residents 1. Please address information in the latest Federal Budget on this issue 4. Family Strengthening Issues Maria Bohan3. Community Resources-Whats needed?Different levels of support is needed from low level to highest level Support groups, transport. Respite. Time out Networks and organisations that are empathetic Ask our members What else do you need? Support-diversity and flexibility Prepare for the caring role Generation Forum in Melbourne 7th June 2005 Session 2Questions framed by Dr Susan Feldman FacilitatorQuestionSmall Group ResponsesElizabeth BennettSandwich Generation Women needsStructural and community change: work places and work arrangements Incorporating different arrangements at different times in womens lives Career path a linear and male concept and financial security is still tied to it Foster mens role in caring for children/family Family career concept required incorporating flexible work arrangements for men too Better parental leave provisions Womens wages need to have more flexibility with both mens and womens work options Time to selves-apart from work and family commitments-better health (mental, physical) Redefine flexibility so that it means real flexibility for women-some lobbying and advocacy is vital with all levels of Government, Corporate and Community sectors Elizabeth BennettSocial Gaps and Support NeedsLoyalty/commitment to caring may be varying/waning? Move away from older generation family members-live with middle generation family members Greater individualism/greater materialism-financial demands dictate options/choices Less sharing of family responsibility of caring More respect for other womens choices Families need individualized management strategies for dealing with their particular care needs-Training? Education? Options?Elizabeth BennettCreative SolutionsWorkplace changes requiredstructural change more flexibility-shorter working hours-casual and contract work Simplify life-less materialism Education-family values-shared caring principles-altruism/for the greater good- incorporated into curriculum development *Involve women and these issues in mainstream education-More public discussion/debate is recommended-More women speaking out about ways of managing all these roles-Men need to be supported in taking on caring roles-Women do not whinge- Men can learn to multi-taskElizabeth BennettCommunity ResourcesWhats available1. Fragmentation of service provision and access to resources and information-need to make more consistently available 3. Work towards clustering of resources-establish reciprocal availability of information 4. Availability of appropriate accommodation- particularly for middle generation people in need of care-examples those with mental illness and/or brain damage 5. Affordable dental and podiatry care for high risk groups 6. Information written in simple plain language that is easy to understandSheila ByardIs the idea of the high cost of ageing a myth?1. Seniors do contribute 2. Seniors only cost society in the last couple of years of lifeSheila ByardInformation about services availableWe should know more about services available Carers Australia operates in every State and have a national office-do we know what services they offer? Do we know what services are available in our own states and towns? How do we find out where to get respite care, what it costs, how many hours, weeks can I have? There is choice and part of the problem is that some carers do not define themselves as carers and do not therefore even think to access support or relief Part of the problem is that Australia consists of such a dispersed populationSheila ByardInformation about financial entitlements beyond those of a formal carerNeed to talk about how to talk with employment decision makers-impact on the workplace of social reform in relation to the needs of full-time part-time and casual carersSheila ByardFamily friendly working environmentNeed for evaluation of existing systems Review of Victorian taxi system in relation to assisting carers in the workforceMaria BohanWhat caring meansSomeone who really cares about me emotional and heart stuff What gets to government and how are decisions made?Maria BohanHow is information distributed?Australian Womens Coalition distribute brochures and information Information is provided in the workplace-how to access meals for parents Information kits for local communities There is a need for making more people talk about caring-the secretariats, key people, media, leaders in the community who can bring about change in families and educate the whole of society on caring responsibilities A good example of this recently was Noleen Brown and her husband caring for their friend Graham Kennedy Establish a task force on AgeingMaria BohanCreative SolutionsEncourage women to form groups-support groups with common needs and concerns, walking, PROBUS and similar service organisations, luncheon, book clubs, new links in the workplace Form links with Mens health education groups Seek social interaction, enjoyment, welfare support, mutual help and peer support Research the relationships between volunteering and caring Research work of OFW and across the 4 secretariats Volunteering can provide a break from caring There are costs incurred for volunteers-transport, membership, activities Volunteers providing time out for older people plus provide a break for women in caring roles Join singing and dancing groups Attend regular musical events organised by local community and church organisationsMaria Bohan Educate yourself in a variety of waysAttend the launch of the HREOC discussion paper on men/women/work or get a copy of it from Pru Gowards office Need different words for caring- use a wordsmith to help with this work. Wow! 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