Community Living Alliance Forums Project Report December 2005 Table of Contents Acknowledgements Introduction and Background Forum Details Themes and Issues Arising from the Forums Recommendations Conclusion Forum Presentations Department of Human Services – Accommodation and Innovation Grants, Kirsti Kihl-Larssen Disability Housing Trust – Richard Deyell Yoorooga Project – Kerryn Vaughan Loddon Mallee Housing Service – Jo Keown and Shane Cockfield Gisborne Respite House- Kay Atlas and Sandra Donnan Young People in Nursing Homes Project – Dr. Bronwyn Morkham Local Accommodation Support Project – Rene Souery Department of Human Services, North West Region – Sue Goding Personalised Lifestyle Assistance Project – Deb Rouget NightLife – Delia Fisher Power Pack – Leisure Networks – Zane Mc Kenzie, Jill Evans and Colin Robson Department of Human Services – Gippsland Region – Angela Tierw Active Support – Junelle Rhodes Contact Details of Presenters Acknowledgements Thank you to: The Community Living Alliance especially the main working group; David Craig, Esther Harris, Troy Johnson, Nicole Langtip, Wendy Mitchell, Rosemary Shaw, Niki Sheldon and Pauline Williams. Rural Access Workers: Chris Walters – Bendigo Carol Morgan - Bendigo Christine Brooks – Colac/Otways Andrew Murray – Baw Baw Shire The staff from the Department of Human Services who helped to advertise the forums. Liz Dimitriades - Active Participation Project Jillian Lane - Active Participation Project The Reichstein Foundation for funding the project. Community Living Alliance Forums Project Report December 2005 Introduction The Community Living Alliance (CLA) is a coalition of groups and individuals from around the state who are committed to supporting and developing policies and services that support inclusive community living opportunities for all people with a disability. The Alliance seeks to promote and encourage good practice and shared learning and endeavour to do this by conducting workshops, research and sharing and evaluating current practice and policies. Originally known as CASL the Alliance was initially formed to lobby for the closure of institutions for people with a disability. There are many different terms used to describe community living; community inclusion, community participation, integration into the community, to name a few. It is important to acknowledge that community living does not only mean being geographically located in a community setting. Some parent/carers of children with high support needs have described their homes as being “institutions” (Forum participant). Some residents of Community Residential Units have described their homes as being like an institution because of the restrictions placed on them for example; lights out at a certain time, no choice with whom to live, no involvement in shopping or deciding what to eat or where to go. CLA believe that the long term interests and well being of all people with disabilities is best served when they are supported to live their lives in the midst of others in a variety of community settings. It is their view that people with disabilities should be able to explore a wide range of different experiences and have support to pursue social interactions, relationships and friendships within the communities in which they live in the same way that people who do not have a disability participate in their communities. It is the intention of The Victorian State Government, according to the State Disability Plan, to ensure that people with a disability fully participate in the community. One of the goals of the State Disability Plan is to: “To strengthen the Victorian community so that it is more welcoming and accessible, so that people with a disability can fully and equally participate in the life of the Victorian community. Building inclusive communities means strengthening communities so that people with a disability have the same opportunities as all other citizens of Victoria to participate in the life of the community-socially, economically, culturally, politically and spiritually.” For a more comprehensive discussion on Community Inclusion, the report from the “Community Inclusion Indicators Project (CLIP)” which was commissioned by the Community Living Alliance in 2003, can be found on the CLA web-site www.communitylivingalliance.org Background In 2004, CLA ran a successful forum entitled “Impact of Housing and Support Models on Successful Community Living” in the Northern Metropolitan region. Due to the success of the Forum, CLA attempted to obtain funding to run further forums. In 2005 CLA were successful in receiving funding from the Reichstein Foundation. A project worker was employed to conduct a further four forums around the state, to obtain a community response regarding housing and support and Community Living. The forums have now been completed and the following is the report. Forum Topics Two forums entitled “Housing and Successful Community Living” were conducted in Bendigo and Colac. The two forums in St. Albans and Warragul were tilted “Support Options and Successful Community Living”. Purpose To inform participants about current projects relating to Housing Support and Community Living. To obtain a community response to Housing, Support and Community Living through discussion and discourse. To inspire new ways of thinking about Housing, Support and Community Living To encourage and promote successful Community Living To develop a resource from the forum presentations Target Group The forums were conducted to attract people with a disability, parents, friends and carers of people with a disability and workers in the disability sector. Approximately 115 people in total attended the forums. Overall there were more workers in the field who attended, than people with a disability and a small percentage of parents/carers of people with a disability. Criteria The criteria used to decide topic and location of each forum was based on the following criteria: Urgency: It was decided that Bendigo and Colac were two areas that were appropriate due to the remaining 2 institutions, Sandhurst and Colanda, being located in these areas. Duplication: It was important that a forum or seminar with a similar theme and location hadn’t previously been undertaken. The decision to use the topics “Housing” and “Support” in relation to Successful Community Living was eventually made because there were many other forums conducted on a range of topics around the state, especially in the last half of the year. Relevancy: That the themes for the forums were pertinent and of interest to the community in which the forums were conducted. Forum One Topic: “Housing and Successful Community Living” Date: 11 November 2005 Location: Bendigo Presenters: Doug Pentland Former resident of Pleasant Creek Institution Richard Deyell Disability Housing Trust Kirsti Kihl-Larssen Department Human Services Kerryn Vaughan Yoorooga Project Jo Keown and Shane Cockfield Loddon Mallee Housing Service Forum 2 Topic: “Housing and Successful Community Living” Date: 14/11/05 Location: Colac Presenters: Richard Deyell Disability Housing Trust Kirsti Kihl-Larssen Department Human Services Dr. Bronwyn Morkham Young People in Nursing Homes Renee Souery Local Accommodation Support Project Forum 3 Topic: “Support and Successful Community Living” Date: 21/11/05 Location: St. Albans Presenters: Sue Goding Department Human Services – North West Region Deb Rouget Personalised Lifestyle Assistance Project and NightLife Zane McKenzie and Jill Evans Leisure Networks – Power Pack Forum 4 Topic: “Support and Successful Community Living” Date: 29/11/05 Location: Warragul Presenters: Angela Kierswosky and David Department Human Services – Gippsland Region Deb Rouget Personalised Lifestyle Assistance Project and NightLife Junelle Rhodes and Pam Active Support – Department Human Services Southern Region Zane McKenzie and Colin Robson Leisure Networks – Power Pack Themes and Issues Arising from the Forums There were five main themes that dominated the forum discussions. 1. Funding and Funding Alternatives The issue of inadequate funding was raised consistently. Despite Victoria’s disability services budget allocation being higher than the rest of the states, it still remains short of what is required. There was discussion around the fact that adequate funding should be seen as a right and not as a favour. A participant at the forum stated: “Funding for support and accommodation options should be seen as an entitlement, as a right, not something that has to be sought out and fought for with cap in hand.” Dr. Helen Szoke, Chief Conciliator at the Equal Opportunity Commission, agrees with this point of view in her paper “When will we be satisfied?” Dr. Szoke states: “Our challenge, at the Commission and for all of the people here today is to ward off the paternalistic needs approach to disability and to look at this issue from a rights perspective. That is indeed a challenge for a community that has based many of its policies and entitlements on this needs analysis.” The United Nations in the Declaration of Human Rights also accords a person with a disability the same rights and responsibilities as a person without a disability. “Disabled persons, whatever their origin, nature and seriousness of their handicaps and disabilities have the same fundamental rights as their fellow citizens of the same age, which implies first and foremost the right to enjoy a decent life, as normal and as full as possible.” Participants at one of the forums suggested that a network of families and interested parties be established to lobby for the provision of adequate funding from a rights perspective. The huge unmet need for housing and support was mentioned again and again. While there was support for innovation in the provision of housing and support and in the shift to person centred planning and service delivery, this support was tempered by the pressure family carers are under. Difficulties with current funding packages for individual support were mentioned in this context. The support and choices packages that have been granted have on average been for very low amounts of time per week and the more substantial packages under Home First are heavily in demand and rationed. Difficulties therefore arise around the capacity of innovative person centred funding packages to address the needs of people with high support needs. While some responses to this tension were offered such as the innovative Nightlife service (see Deb Rouget’s presentation), this is only one isolated program in the service development stage and much more focus is needed to address this gap. These tensions can undermine positive service development across the sector as local community initiatives may focus on meeting the unmet need at the expense of person centred service delivery prioritising community inclusion and quality of life. While Disability Services have been clear that they are not funding more Shared Support Accommodation ( Community Residential Services) because of the limits of the model they have not clearly committed to an alternative that is planned and developed to meet the unmet need. The point was made that decisions about service provision are crisis driven. Also there were inequities between support hours available via different areas of government and this was highlighted by some of the examples of the support that can be delivered through the criminal justice system or via compensation. Local Community initiatives which seek to meet needs for housing and support were a strong focus of the forums and examples such as the one following were highlighted. The need for encouragement of such initiatives and their support via government funding was called for. Where programs rely too much on voluntary support, donations or a key personality who drives them they may not be sustainable and secure for people with a disability. Two parents of children with high needs, Kay and Sandra, who attended one of the forums, explained their inspirational story of how they and a group of other parents obtained funds to provide a much needed respite house in Gisborne. They wrote to the local council, State and Federal Governments about the need for respite care in the area and raised the community’s awareness of the situation. The local council was very supportive and the State Government tendered out for a service to run it and will fund the service but not the “bricks and mortar”. Golden City Services in Bendigo were awarded the tender. A ‘black tie’ community event “Revel in the Ranges” was organised with support from the community. An auction was conducted on the night and in total they raised $86,000. Local tradespeople have donated their services to construct the facility which will be built in 2006. Residents of the Macedon Ranges and Mt. Alexander Shires are eligible to apply to use the respite service and should contact Golden City Services. The parents group believe that the success of the venture was as a result of raising the community’s awareness of disability issues, the generosity of the community and the co-operative non-threatening way in which the group negotiated. One of the limits of facility based funding in the provision of housing and support is the lack of choice and opportunity for shifting between different models of housing and support once a placement is made. Many people have become stuck in the group home model and there was acknowledgement of the need to increase flexibility and freedom of movement across different housing models. However the importance of follow up evaluation was highlighted. In the movement of people from current Shared Supported Accommodation, evaluation of these peoples quality of life in their new location has not taken place. This is worrying when up to 15% of these people have moved to Supported Residential Services where, on the whole, the level of support and services available is much less than in disability services Shared Supported Accommodation. Choice of demonstrated quality housing and support options that address peoples changing lives and needs is required. Many examples of good and innovative practice were showcased at the forums but the question arose as to how these are being evaluated in terms of quality of life and successful community living. If evidence of good practice is identified how are these models being supported, funded and expanded. Likewise, if the evidence is showing certain models are not providing quality outcomes what resource implications are resulting? The recent report ‘Presenting the Evidence’ in the latest edition of the National Council of Intellectual Disability journal “Interaction”, highlights the evidence that the larger the number of people housed in a residential service the less ‘quality of life’ for people living there. How, if at all, is this and other evaluation of services shaping funding decisions? Planning of housing and support also needs to be looked at in terms of overall urban planning. At present there appears to be a lack of links between design of housing for people with a disability and good urban planning which links people to transport and other facilities. These links need to exist between local and state governments and across departments to ensure better urban investment from a holistic perspective. The growth of community based social housing through the allocation of around $120 million to Housing Associations across the state was an example given as a potential source of housing for people with a disability. However, there have been no requirements placed on the Associations that they plan the building and acquisition of stock with people with a disability in mind. None of the stock is required to be accessible and this was pointed to as an example of poor links and planning but also one that provided an opportunity for redressing the low levels of accessible social housing stock if this link could be forged. Other suggestions for funding options and comments included: ? Establish an advisory trust to advise and assist families on where and how to obtain loans ? To lobby for people in receipt of the Disability Support Pension to obtain low cost loans. The pension is a reliable and secure source of income. ? That a state-wide lobby group be formed to approach and develop partnerships with businesses, banks, organisations and philanthropic trusts. ? That funding should not be seen as a competition but agencies should be encouraged to work co-operatively for the benefit of people with a disability. ? Funding should be individualised rather than agency based. This was one of the positive changes that the Power Pack - Leisure Networks project (see more details in presentation summary) implemented with a high degree of success. ? The recently funded Housing Associations and the soon to be established Disability Housing Trust could be possibilities for alternative funding for accommodation options. ? There has been some growth of the private rental market for people with a disability as tenants are seen as reliable and have agency back up. There needs to be a more active investment in developing this market. 2. Dissemination of Information Participants at the forums felt that the projects and information that were presented at the forums (Accommodation and Innovation Grants, Yoorooga Project, Disability Housing Trust, Loddon Mallee Housing Service, Local Accommodation Support Project, Young People in Nursing Homes Project, Personalised Life Assistance Project, Night Life, Active Support and Power Pack) should be made available and promoted to people with a disability, families, and service providers. Information about new innovations and ideas should be disseminated and accessible and in an accessible format to the wider community and to people with a disability, parent and carers who do not have links with the disability sector. This could be a government responsibility as if funded innovative projects. It was suggested that a network could be established whose role it would be to collect and distribute such information. 3. Support and Alternative Support Options “If I don’t receive the support I need, my disability becomes the focus of my life rather than just a part of it” Liz Ellis (Western Region Disability Network) Adequate support is often linked to having sufficient funding available. Alternative ways of supporting someone with a disability who wants to live in the community can be by support such as that which is described in the Key Ring Model (Accommodation and Innovation Grants) and the Circle of Support (Yoorooga Project). In these 2 projects friends and family are co-opted to provide different types of support from providing transport, to having a cuppa, to cooking a meal. Common interest support can be a valuable source of support to assist with community participation, for example attending football matches with people who barrack for the same team. Shared support where support dollars are shared amongst a group of people such as in the Night Life project (see Night Life presentation notes).This allows for a flexible system of support where support is provided at a time that suits. For example, rather than paying an attendant carer for a 12 hour shift to provide turning support, a shared carer would attend only for the time it took to perform the turn. An example from the Loddon Mallee Housing Service showed that a person with high support needs experienced intensive support for two years after which the person needed less hours of support from the service and was living a full life in the community. As one participant said: “If you get the support right, you need less support”. However, for people who need 24 hour care these options may not be the solution. Inadequate support was seen as one of the main reasons, parents and carers particularly, did not feel confident about their son or daughter living in the community. Comments such as: Not everyone can live in the community. Authorities need to get real about people with high support needs and the amount of support that is needed compared with what is available The region will need to supply significant Support and Choice packages to ensure needs are met Families with children with high needs are not having their needs met. There are long waiting lists for accommodation. If the Department are not building more Community Residential Units how will they cater for people with high needs. Many parents are ageing and haven’t got time to wait for a vacancy. The Department need to acknowledge and support families adequately Inequitable packages for people with the same high needs Need to ensure support structures are in place when people are placed in the community otherwise they are set up to fail Many parents and carers are burdened with the full responsibility of their son or daughter’s care, with very little support. This was keenly expressed and felt especially by parents of children with high needs. It was suggested that there is a need to have continuum of care options which are flexible, as needs of people with a disability change eg relationship development or breakdown or disability becomes more severe. 4. Accommodation - Community Residential Units (CRUs) / Shared Support Accommodation (SSA) The participants response to the issue of accommodation, centred mainly on the group home model of Community Residential Units also known as Shared Supported Accommodation. Comments and questions included: Model of grouping (as in group homes) can create bigger demands CRUs can be like a mini institution In the current model of CRU’s, residents are often unable to make decisions about when and where to go out, what time to go to bed etc. Need to look at the design of CRUs in relation to peoples needs Important not to separate CRU as an option. Changes could be made to CRUs to fit with other models and therefore create another option. (See the Active Support project presentation which is looking to improve group home living by making it more personalised.) People in Supported Residential Services are often forgotten, they need to move into community as well Support Needs Register system needs to change. System needs to be more flexible to meet people’s needs. People should not be obliged to take the first option that becomes available just because a vacancy exists. People should have the choice to move to another option if the original one is not appropriate. Difficulties in planning support as needs change. Consideration needs to be given to people’s relationships when looking at accommodation options. Need to have the ability / opportunity to express choice. One couple who are in a relationship have been requesting accommodation together since 1989. Moving people out of and opening up SSA (CRU) isn’t necessarily going to be the best solution or solve the problem of people with high needs Originally CRUs were built as a transition from institution to community living. Many people are still living in them with no further transitional plan Families with children with high needs are not having their needs met. 1000 people on CRU waiting list. If the Department are not building more CRUs, how will people with high needs be catered for? Only a small number of people are able to move out to other options. Families with children with high needs need appropriate options now. Government could be looking at building appropriate, purpose built accommodation for people with high needs. Will SSA (CRU) be primary model for people with high needs? Gap between staff numbers and residents in group homes Why hasn’t the Department addressed the issue of Duty of Care and Dignity of Risk? Service Providers are concerned about litigation and therefore are preventing people from making their own choices about the activities in which they wish to be involved. If a person is not living in shared accommodation but living on their own, a process/ option to link up with other people is needed to avoid alienation / isolation (See Yoorooga Project Personalised Lifestyle Assistance Project and Accommodation Innovation Grants presentations) 5. City versus Rural Dilemma Rural areas need more accommodation and support options Rural areas often aren’t successful in submissions for projects as there is the mistaken belief that community has natural supports. High proportion of people with high needs living in Barwon South West region. Country /rural areas do not receive as many services as city or are located at a distance. Negotiating with Real Estate Agents for suitable private rental is easier in rural areas. Recommendations 1. Comprehensive Information Distribution Network a) That CLA either develop or facilitate a strategy to create a state-wide information distribution network. CLA could be the point of contact and distribution centre for any information/issues, campaigns, new ideas, programs, projects, future seminars etc. relating to Community Living. Whilst CLA do this already, judging by the responses at the forums this needs to be done on a more comprehensive basis. CLA would need to ensure that the information is distributed in a variety of mediums to ensure that the material is accessible to all people with a disability. Funding could be sought to assist with the implementation of the network. People with a disability, their friends and families, workers in the disability sector and the community in general will be better informed about current issues and possible solutions and regular contact and information from such a network could help prevent rural areas from feeling isolated. The Gisborne Respite parent group felt that the success of the respite house project was due partly to increasing the community’s awareness of disability issues. b) Submit for additional funding to conduct further forums around the state. Most of the participants found the forums useful and interesting and want more forums organised. Comments from the participant evaluations included: “Gave me some good food for thought about choices we can make for our daughter” “Good variety of speakers” “Discussion at end was most valuable part” “Has given me a wealth of information and I have lots of thinking to do” “Thank you for organising-please continue to raise profile in this area and provide access to meetings, info etc.” 2. Facilitate the establishment of network/lobby groups to encourage community living for all people with a disability. Extend an invitation to people with a disability, parents, carers, family, friends and interested parties to show an expression of interest in forming: ? A state-wide network or lobby group to address the issue of inadequate support and the lack of accommodation options for people with high needs and their families to live and participate in the community. ? A state-wide network or lobby group to address support and service provision from a rights perspective. ? An advisory group to explore funding options that will assist people with a disability to live how they choose to live so that the disability is not the focus of their life but only a part of it. Conclusion 1. The key elements to achieving “Successful Community Living” identified from the forums were: Personalized / individualised planning, taking into consideration each persons needs, desires, skills and abilities, strengths, dreams and weaknesses Choice in all areas of life Flexible and adequate support (enabling adventurous or non adventurous living!) to enable a choice of lifestyle. 2. The benefits derived from living successfully in the community for both the individual and the community were noted. Changes identified in the individual included: More likely to try new things (activities, food etc) Happier and more content More sociable More confident, including physical stature, talked more More interest in the world Fewer aggressive outbursts and incidents Benefits for the community: Community Living encourages acceptance, understanding and awareness of people with a disability. This can lead to increased accessibility in the community not only for people with a disability but anyone who might be seen as different. The person with the disability is known by their name rather than the disability. Broader friendships are forged and a sense of belonging is engendered in members of the community. There are a number of examples around the state where people with a disability are successfully living and participating in the community as showcased in the forum presentations. There are still however, a number of people who are not. There are 6,500 young people with high needs who are living restricted lives in Nursing Homes. Despite the fact that both the state and federal governments are implementing plans and projects that encourage and support community living there is still a gap between the theory and the practice for a large number of people. As one participant said: “There is a long way to go to provide accessible, responsive accommodation and support options for people with a range of disabilities AND their parents and carers” and in the words of another participant: “People with a disability aren’t listened to, people don’t take any notice of what people need or want, there is a need for people with a disability to be heard”. To ensure that people with a disability and their families are heard and listened to and to find a resolution that brings quality of life to all people with a disability and their families and carers, we need to work co-operatively but steadfastly with people with a disability, their families, the community, local councils, state and federal governments. Summary of Presentations Key Note Address – Doug Pentland Former resident of a number of Institutions and a member CLA. Hello my name is Doug Pentland. My talk today is about my life and community living. I have lived in institutions such as Sandhurst here in Bendigo, Pleasant Creek in Stawell and Caloola in Sunbury. Then I lived in a group home with staff. Now I live in a private rental house which I share with a friend and I get outreach support. So what were the different types of housing like and how much did community play a part. First, institutions. When I lived in institutions there wasn’t much community involvement. For example – going to the footy. We always had to leave at half time and I never saw a game finish. We had to be home by a certain time. Then there was shopping and going to the shops. We were not allowed to go shopping without staff so staff bought all our clothes and we had to accept what they chose whether we liked it or not. About friends. We never got to know other people outside the institution. Next is group homes. I lived in a few and all had more community involvement. For example I got to know people next door, down the street in the shops, lots more people. Going shopping. I went on my own and chose what I liked. Movies. I got to go much more. Caulfield campus. I learnt to read, write, spell and do maths. I started getting involved in self advocacy like going to Reinforce self advocacy. Now I live independently and I’m renting a house. I make all my own decisions. I still do Reinforce work. I wrote a book. I helped make lots of videos. My neighbors are my friends. I know the people in my community. The Question is “What makes housing into Community Living?” 1. Making your own decisions about when you want to go out into the community. 2. Making your own decisions about where you want to go. We don’t all want to go to the footy but we got taken if we liked it or not. Let me end with some words of encouragement. Let’s go forward-not backwards! It might be a bit scary but it’s definitely worth it to be part of the community! Department of Human Services – Kirsti Kihl-Larssen Kirsti is Manager of Housing and Support, Community and Individual Support Branch, Disability Services Division, Department of Human Services. The presentation focused on the new directions for the provision of accommodation for people with a disability, progress to date and new developments and opportunities. The projects that have arisen out of the Accommodation Innovation Grants were discussed. The Victorian State Disability Plan Innovation Grants aims to inspire and encourage people and organisations to change the way they think, work and live, by funding grants and PhD scholarships for projects which offer new thought on disability issues. A full description of the Grant projects can be found on the web site www.dhs.vic.gov.au Future Directions Three pronged strategy: a) Divert people from Shared Supported Accommodation (SSA - Community Residential Units - CRUs) -Earlier planning and provision of support for people with a disability to assist with their capacity to live independently - Progress to date- Accommodation Innovations ? 170 people supported b) Increase effectiveness of SSA -The expansion of community based options has already seen SSA becoming increasingly targeted to people with higher needs - Individualised planning will see this trend increasing with existing facilities directed towards people with a disability with complex and high support needs. - Range of accommodation configurations within SSA - More targeted SSA service system -Focus on appropriateness of SSA response – throughput either out of SSA or to another SSA -Intensive time-limited interventions -Skilled staff c) Increase pathways from SSA Expansion of Community Based Housing Options Promote access to office of Housing’s public and community sectors which offer a range of housing programs with a variety of tenures and models Collaborating with community Housing to pilot “Neighborhood Models” that enable variable supports to be provided across different sites Continuing community building initiatives associated with Disability Services RuralAccess and MetroAccess projects. And Expansion of Community Based Support Options Involving the person with a disability and their family or ”circle of support” in deciding what supports are required and how they are to be provided is critical to promoting the role of informal support networks. Individual planning is a key component for achieving the mix between funded formal supports and informal supports. Housing Options to Grow as an alternative to rostered support Dual Occupancies-granny flats Shared tenancy and pooling of support/costs Neighbourhood models – including privately purchased Sited near intensive support service Accommodation Innovation Grants Summary 16 Approved (8 metropolitan and 8 rural) Includes 4 parent groups 1 ethnic specific group Many based on “KeyRing” model from United Kingdom Many groups not previously involved in disability sector Groups as “change agents’ Accommodation Innovations Key Learnings Must work with regions to link disability supports with accommodation opportunities. Managing time frames- takes time for individuals to make transition to more independent living and for families to feel confident these arrangements are secure. Capacity especially in rural areas to work with Real Estate Agents to source suitable properties. Difficulty of navigating the Accommodation landscape. Value of links with Rural and Metro Access workers. Benefits of linking people with others who have shared interests eg gardening rather than generic support person. Develop housing options which maximise the opportunity for peer support and sharing disability supports. Examples of Specific Cases Agency assisted “K” into independent accommodation which resulted in improved self esteem, diet, health etc. But when it all became difficult again project was able to re-engage to co-ordinate family and other support networks. Agency linking participants to a Community Kitchen program. Participants learning budget management, shopping and cooking skills with practical outcome- they cook and take home their own meals. Persistent agency advocated on behalf of young person with interest in policing to gain some volunteer work with police despite initial police reluctance. The Independent Accommodation Network (IAN) project has published its “Here’s House to Do it” kit which provides people with information about finding a home and housemates, rental issues, rights and responsibilities etc. Value of culturally appropriate supports Agency developing a network of trained volunteers. Agency developed a pro-forma for real estate agents to assess whether housing is suitable for people with disabilities. Disability Housing Trust – Richard Deyell Richard is Director of the Disability Housing Trust Project, based in Head Office of the Department of Human Services. Richard’s presentation was about the Government's plans to establish a Disability Housing Trust, for the purpose of developing new housing choices for people with a disability. Government Commitment Government has committed $10 million $6 million in 2005/06 and $4 million in 2006/07 Targets set for this $10 million - 20 additional housing opportunities in 2005/06 - 80 additional housing opportunites in 2006/07 Purpose Create new housing opportunities Provide choice for people with a disability Appropriate and affordable housing Partnerships - Housing providers - Local Government - Private Target Group 1. Priority for people with a disability eligible for disability services through Department of Human Services 2. Also to work directly with other people with a disability and their families Access to the Trust: Target Group 1 $10 million to: -House people with high and complex needs -Support funding from Department -Joint planning – Trust, Partners and families and Department - Access via Department Target Group 2 Other sources of Funding - Flexibility to negotiate private arrangements - Access to trust The Trust Community based New entity Charitable trust Announcement when - in operation - information about projects Key features of the Disability Housing Trust New housing choices Community housing with support Not Shared Supported Accommodation Department of human Services allocation of support Not a tendency management service, Housing Associations and registered providers will be contracted Summary of Opportunities Support and Choice Innovation Grants Individual planning Service Exits from Shared Supported Accommodation Housing Associations Community Housing sector Disability Housing Trust Yoorooga Project – Kerryn Vaughan Kerryn is the Coordinator of the Yoorooga project (a family based project ). The aim of the project is to assist people with disabilities to move into their own homes and to help coordinate a Circle of Support, which is made up of unpaid family and friends. The presentation included information about Yoorooga and the model of support used and some examples of how it works in practice. What is Yoorooga? A small family governed service that aims to assist people with disabilities, to live in their own homes in the community. Yoorooga is funded by Department of Human Services Accommodation Innovations Grants. Yoorooga Vision Treating people as unique individuals and supporting them in personalised accommodation and lifestyle. How the Program Operates The program is directed by a Governance Group. - E.W.Tipping Foundation is the host agency. - Project Coordinator assists participants Yoorooga does not Replace any of the other services individuals receive such as direct support and case management. Provide any funding. The focus is on empowering people to effectively utilise paid and natural supports, and to be involved in the community. Yoorooga Pilot Participant: Yoorooga pilot participant Cameron Skinner. Family Issues Fear for person’s safety Fear of community resistance Fear of person being lonely Fear person will not be properly supported Fear of social intimidation Fear of not being able to personally protect person Fear of person lacking living skills Difficulty letting go Finances: who controls/monitors, affordability etc. Community Residential Units Pro’s Friendships Safe environment Supported by staff Transport Con’s Community labelling Less individuality Compatibility issues Exposing family members to other residents’ behaviour Long waiting list Restricted activities Reduced community access Importance of accommodation in the community Person: Promotes/Develops: Independence Self worth Relationships Treated as individual Social choices Own lifestyle management Community: Promotes/Develops: Acceptance Understanding Awareness Person by name rather than disability Inclusion Broader friendships Types of Supports: Paid (Formal) Direct Support Workers Counsellors Doctors Day Centre Staff Case Managers Unpaid (Informal) Family members Friends Neighbours Workmates Recreational acquaintances Paid Supports: Pros: Reliable Professional Skilled Networked Replaceable Objective Cons: Impersonal Encourages dependency Ever changing Cost Detached Unpaid Supports Pros: Genuine Consistent Available Free of charge Knowledge of person Dedicated Cons: Controlling Self interest Over protective Circle of Support Yoorooga will assist each participant to develop and maintain a Circle of Support. Supporters contributions may include: Phone calls Dinner Movies Home maintenance Regular cuppa Shopping Moral support Financial support Community access Walking Recreation Education Transport Advocacy Participant No 1 27yo female previously in crisis situation Now with Yoorooga support: Successfully living in own home Volunteer work Paid support Renegotiated Employment Agencies TAFE support Established Circle of Support Health & Well-being outcomes: Ceased medication Increased self confidence Enhanced relationship skills Increased daily activity Improved diet Improved sleeping patterns Increased overall happiness Social outcomes: Reduced loneliness Improved time management skills Improved reliability Improved recreational involvement Improved community involvement Participants Goal – 10 participants 2 accepted participants 4 applications being considered (2 from CRU’s) 2 CRU residents discussing Yoorooga support 2 families considering options Who can apply… People can apply to be part of the Yoorooga Project if they… Have a vision to live in their own home, with a range of formal and informal supports Would like to choose who they live with Would like to design and have a say over their own supports and lifestyle Would like to extend their friendships and become active members of the local community Live within the West Gippsland Region Are registered or eligible to register for Disability Services with the Department of Human Services All applicants who meet the above criteria will be considered. Summary Must be the person’s choice Listen to what person wants It can be a lengthy process Never under-estimate person’s capacity Person needs sense of purpose Should only move into their home when firm supports are in place Paid and unpaid supports are equally important Successful if supported appropriately Contact Details of Presenters Doug Pentland C/- REINFORCE Phone: (03) 9650 7855 Accommodation Innovation Grants Kirsti Kihl-Larssen Department of Human Services Manager Housing and Support Ph: (03) 9616 9723 Fax: 9616 8555 Email: Kirsti. Kihl-Larssen@dhs.vic.gov.au Disability Housing Trust Richard Deyell Ph: (03) 9616 8539 Email: Richard.Deyell@dhs.vic.gov.au Yoorooga Project Kerryn Vaughan (Coordinator) Ph: 5622 7724 / 0419 516444 kerryn.vaughan@tipping.org.au Loddon Mallee Housing Services PO Box 212, Bendigo 3552 Jo Keown Ph: 5444 9024 Mobile : 0419 536 496 Email – jok@lmhs.com.au Shane Cockfield Ph: 5444 9032 Mobile : 0400 922 523 Email – shaynec@lmhs.com.au Gisborne Respite House Golden City Services Ph: (03) 5441 4206 Parent Group Kay Atlas Ph: (03) 5428 3699 Sandra Donnan (03) 5428 3581 Young People in Nursing Homes Project Dr. Bronwyn Morkham – National Director National Alliance of Young People In Nursing Homes Ph: (0 3) 9482 5655 www.ypinh.org.au Email: bmorkham@ypinh.org.au Local Accommodation Support Project Geelong; Wyndham; René Souéry Steven Tibbits Ph. 52 722 561 Ph. 9974 1144 Mob. 0407 553 261 Mob. 0413 962 304 Email. rene@creategeelong.com Email. steven@creategeelong.com Department of Human Services – North West Region Sue Goding, Unit Manager, Service Coordination Disability Client Services North & West Metropolitan Region Ph: 9412 5414 Email: Sue.Goding@dhs.vic.gov.au Personalised Lifestyle Assistance Project PLA Project Facilitator Deb Rouget Ph: 0412 001 388 Email: debrouget@netspace.net.au NightLife Delia Fisher Ph: (03) 9569 2089 Email: courage2@bigpond.com Power Pack – Leisure Networks Zane Mc Kenzie, Jill Evans, Colin Robson,Team Leader Program 101 Leisure Networks Ph: (03) 52249929 Email: colin@leisurenetworks.org www.leisurenetworks.org Department of Human Services – Gippsland Region Angela Tierwick and David Baillie Ph: (03) 5136 2400 Email: Angela.Tierwick@dhs.vic.gov.au Active Support Georgia Hills – Department of Human Services Ph: (03) 9616 7387 Email: Georgia.Hills@dhs.vic.gov.au Junelle Rhodes – Department of Human Services-Southern Region Ph: (03) 9767 8653 Email: Junelle.Rhodes@dhs.vic.gov.au Loddon Mallee Housing Services Jo Keown and Shane Cockfield `It is a fine and fragile line that we all tread which forms the divide between safety, security and cultural and community, connectedness and hardship, alienation, dispossession and homelessness’. Overview Our ultimate purpose is to integrate people experiencing homelessness into broader community supports so that they may create a more secure & connected future that allows them to actively participate in the community of their choice. Service Delivery Area Loddon Mallee Housing Services offers integrated services and consists of the following divisions; • HOUSING SERVICES DIVISION • COMMUNITY SUPPORT SERVICES • AFFORDABLE HOUSING ASSOCIATION Service Profile The Outreach Support Team provides a diverse range of services within Loddon Mallee Housing and is involved in delivering a number of generic & specialist programs and projects, which cross many other functions of the organisation. The Outreach Support Team consists of four distinct funding activities including; • (SAAP) Supported Accommodation & Assistance Program (Bendigo & Kyabram) • Accommodation Outreach Support (Disability) • Home Based Outreach Support (Mental Health PDSS) • Individualised Support Packages (Complex Needs Program) • The key functions of the team are to provide support and assistance to those most in need in our community, those experiencing homelessness or housing crisis, mental health issues and those with a disability wanting to remain in their own homes. • The Outreach Support Team delivers individualised support services to people with disabilities, based on an integrated, multidiscipline service model, resulting in seamless service provision, across a wide range of programs. • Supported Accommodation + supports • Private Rental (modified) • Caravan Parks • Transitional Housing • Maintaining current accommodation • Public Housing Segmented Waiting List • The Office of Housing implemented the Segmented Waiting List during 1998/99 to replace the existing generic system of accelerated access to public housing called Priority Housing. • Allocations on a priority basis had been increasing steadily since the early 1990s to a point in 1998 where they comprised almost one in two allocations. The Segmented Waiting List continues to offer accelerated access, but unlike Priority Housing, distinguishes between priority applicants on the basis of circumstances. • The Segmented Waiting List was introduced with the intention of responding more effectively to high needs groups and to improve planning and service integration. This system was developed in the context of the 1996 CSHA which included the provision that "priority of assistance will be given to those with the highest needs". The Segmented Waiting List is made up of: • 1. Recurring Homelessness • 2 Supported Housing • 3 Special Housing Needs • 4 Wait Turn The Recurring Homelessness Segment for people experiencing recurring homelessness or at risk of sustained homelessness. This segment was implemented on 1 February 1999. The Supported Housing Segment for people with a disability who have significant support needs or require housing that is wheelchair accessible. This segment was implemented on 30 June 1999. Special Housing Needs: The Special Housing Needs Segment for people living in unsuitable housing. This segment was implemented on 17 May 1999. Alternative Housing & Support Models Complex Care Needs Program - Loddon Mallee Housing Services Background • In May 2000, the Department of Human Services, under pressure from the Melbourne Magistrates Court, made a request to LMHS to house a client who was classified as being `homeless’. • His homelessness was a result of having absconded from his care. The people caring for him, at that time, had reached the stage where they were frightened of him and were no longer willing to have him in their care. • He was facing serious criminal charges of alleged sexual assault, arson and he was self injuring • LMHS agreed to provide accommodation & support to the client , providing housing within 24 hours of the initial request. • LMHS contracted Nursing staff to provide 24 hour support The Service Model • The initial model was based on the need to contain the client, keep the community safe and keep him and the staff safe. • A vacant Transitional Housing property was made available. • Within 6 weeks, LMHS had recruited and employed staff to provide 24-hour support Outcomes • Over the ensuring years the integration of the client into the community has formed the basis of the current service model Incident Reports have significantly decreased over the years. Future Directions • Complex Care Needs Program - A History Evaluation and Recommendations for Future Directions’. Draft report • Potential development of additional housing through the AHA process (purpose built properties) • Provide additional housing & support packages to other clients Local Accommodation Support Project (LASP) Rene` Souery For people with a disability wanting to live independently in the community For all ages and abilities Provides options for people wanting to move into independent accommodation. Assistance in all areas of making the transition into independent accommodation. Individual Accommodation plans help ensure best options for individual needs. Provides assistance in accessing supports where needed including: o Investigating installation options & modifications for wheelchair access o Rails or other modifications for bathrooms, kitchens etc. o In-home support o Training, in areas such as budgeting, housework, cooking skills etc. Can liaise with appropriate organizations or agencies on client’s behalf Assistance in organizing and setting up services, utilities, council services etc. Comprehensive database of accommodation contacts and options Information kits provided help make transitions easier Can facilitate meetings between potential housemates This is a FREE Service 1. Aim – the aim of LASP is to provide information, resources and appropriate assistance to people wanting to live independently within their community. 2. Service – LASP is a comprehensive and complete service provided to cover all areas of sourcing and transitioning for disabled people to access independent accommodation. 3. Objective – LASP will place people into - suitable, appropriate, adequate, safe, and satisfying accommodation within the community 4. Choice – LASP provides a wide range of accommodation options, working with the individual to ensure the best outcomes are always achieved. 5. Support – LASP can refer clients to appropriate Service providers and community supports where needed. 6. Monitoring –Ongoing support through LASP for up to 12 months and regular monitoring during this period ensures the client has the best possible chance for success. To access this program clients must have a disability and be eligible for Service with the Department of Human Services (we can explore eligibility if unsure). LASP provides this Service in Geelong and Wyndham. Details at end of report . Young People in Nursing Homes Project Dr. Bronwyn Morkham National Director The Issue A young person enters an aged care nursing home somewhere in Australia every day of the week 6,500 young Australians now live in aged care facilities because they have nowhere else to go NH cannot support the different and diverse needs of young people with Acquired Disabilities. They cannot support Rehabilitation Disability services including equipment Community access Social activities young people need to maintain well being The Aim Choice for young people and their families in Where they live The type of accommodation setting they live in How they are supported Community based supported accommodation options Commonwealth and States jointly responsible for funding and fixing Better integration of health, acute care, disability, aged care, housing services Long term care and support based on need not age New infrastructure Existing disability systems cannot support different/diverse needs of young people with Acquired Disabilities Replace ‘bricks and mortar’ approach with person centred New services must Consult with young people and their families to determine what they want Rehab, equipment, style of support, style of accommodation, community access Invest in transition arrangements both in and out Regain life skills lost Adjust to changes Support families Staff trained to support needs of different disabilities Develop partnerships with aged care, acute care, community sector: providers and advocacy groups Must be o Community based o Options on the spectrum…no one ‘type’ o Flexible: respond to changing life circumstances and changing needs o Step down or step up o Support residents to have a voice in decision making o If NH remains the preferred choice disability supports and services must be delivered in the NH Access to the community must be available Higher staffing ratios Different ‘rules’ for YP Staff trained to support needs of different disabilities Already Successful St Martin’s Court 13 fully self contained units pooled attendant care hours provide onsite care 24/7 Individual care and support plans developed in consultation with each resident Residents have say in selection of applicants 2 respite beds Strata title available Blackwood Street 3 BR shared house funded through Innovative Pool 3 young women out of NH 28 hrs nursing per week; 3-4 hrs therapy per week Some community access Fern River 6 Villas: 5 individual, I shared Supports 7 people with MS but has capacity to accommodate more: families 2 registered nurses work 60 hr fortnight; 1 SEN Carers work 4 shifts over every 24 hr period Physiotherapy attendant and activities coordinator funded through Lotteries Commission Dorothy Sales Cottages 8 people with ABI in 2 ‘cottages’ On site physiotherapy inc. hydrotherapy pool used by community I respite bed Hopes Cooperative Living Project Focus on social interaction, independence with support Small cluster of independent units surrounding common house Residents share support costs (hours or dollars) with rostered volunteer and peer support Common house doubles as respite for added income Strata title available YoungCare 18 fully self contained units Shared site with NH takes advantage of NH ancillary services for Night nursing Hydrotherapy Physiotherapy Laundry services Food preparation Department of Human Services Sue Goding, Unit Manager, Disability Client Services, North and West Metropolitan Region 1. Government Policy Context: Victorian State Disability Plan 2002-2012 Ten-year outlook A new approach to disability Whole-of-government approach to disability For people with intellectual, physical and sensory disabilities, acquired brain injury and neurological impairments 2. From Vision to Reality: The Priority Strategies Reorient disability supports Develop strong foundations for disability supports Promote and protect people’s rights Strengthen local communities Make public services accessible – all government departments to develop disability plans 3. Reorient disability supports Individualised Planning & Support (IP&S) - Person-directed planning - Ensuring greater choice and flexibility - Engaging a range of supports (not just formal, funded) - Promoting community membership and social connections 4. Accommodation for people with a disability – history C19 – institutions – response for all who were seen as “not fitting” in society – people with a disability, people with mental illness, the poor and homeless Mid C20 – move began to smaller congregate care and community residential units – housing 5-6 people in the community 1990’s – programs such as IHAS and latterly Homefirst – support for people to stay at home or live independently with support. Now - ? The last of the big institutions – Kew Residential Services – to close by end of 2006 ? Focus on individualised options where people with a disability and their families decide on the model of support they require. 5. Accommodation directions The aim is to support people with a disability to live in settings that are best suited to their individual needs and wishes. The demand for housing and support remains strong. (Over 200 people listed on the Service Needs Register as urgently requiring accommodation) Wherever possible, people should receive supports in least restrictive environment. Not all people need the intensive staff support of a CRU. Other supported options are relevant to many. CRUs will remain an option for many people who need intensive 24 hour support, with an increased focus on development of skills and enhancing community involvement. 6. Staffed Accommodation in North & West Metropolitan Region The North and West Metropolitan Region currently provides staffed accommodation support to over 1000 people with a disability within 226 houses located throughout the region. In N&WMR, long-term accommodation support is provided in 138 houses managed by Disability Accommodation Services (DAS) and in 88 houses managed by Community Service Organisations (CSOs). In addition, Plenty Residential Services accommodates 102 people in 24 houses. Shared supported accommodation houses and units provide varying degrees of staff support, according to the needs of individual residents – generally 5-6 bedroom houses, some unit developments have allowed flexibility. 7. Support and Choice Initiative Individualised planning and support approach-aim is to work with people with a disability, their family and network to identify what they want and to build a network of supports with a focus on community. 1000 + people/outcome targets state-wide: Support to move from Shared Supported Accommodation (CRU) – over 100 people state-wide Support to remain living at home Support for aging carers/people with disabilities and families of children with disabilities 8. New Approaches CRU as ‘one-size-fits-all’ no longer appropriate for everyone. People leaving institutions such as Kew Residential Services will move to CRUs. People in CRUs will move to more individualized settings where appropriate. These moves will create vacancies in CRUs. People with the skills and motivation to live independently in the community are being supported to move with support provided in line with each person’s Individual Support Plan. Over 20 people have moved out so far. The new approach is that a range of options and possibilities should be explored with people with a disability and their families to ensure that their accommodation needs are met in the least restrictive way possible. Range of possibilities depending on person’s plan and options Aim to support people according to their individual plans – with shopping, household management, budgeting, cooking, community integration – whatever is identified Office of housing, private rental, accommodation owned by person or family Alone or sharing with others 9. Other Key Initiatives Disability Housing Trust o Will develop more housing options for people with a disability and attract capital investment through family, philanthropists and commercial sources Housing Associations o Development of associations which will develop innovative options with flexible policies in relation to rent setting Accommodation Innovation Grants (15 projects, > 170 people to be supported) o In the western part of the region, two organizations have grants to develop alternative accommodation options. o Service Needs Register review which ensures that people registered have an opportunity to consider options and only remain on SNR for staffed accommodation if that is the service most suited o Mobile Attendant Care (Nightlife) to increase the flexibility and availability of over night support in the person’s own home o Work with Office of Housing to improve the access for people with disabilities to live in public housing o Work with Real Estate both locally and through peak body to improve access to private rental o Increase in Respite services Personalised Lifestyle Assistance (PLA) Deb Rouget, Project Facilitator. “Thinking Beyond Tradition” The PLA project believes that all people should have the opportunity to pursue a unique lifestyle that is personally meaningful, relevant and typically intertwined in the community. The PLA project began in mid 2003. The project is a small resource and assistive project that aims to develop numerous small grass roots initiatives throughout Victoria that endeavor to create socially inclusive lifestyle arrangements that are highly personalised (one person at a time) and designed and influenced by the people who use them, together with their families if necessary. One by One One by One emerged from most of the families who were original members of Person by Person. One by One is a small family governed arrangement in Melbourne that has a vision to create highly tailored personalised support arrangements around each of their daughters so they can follow natural pathways e.g. work, recreate, study and develop friendships in the community. Each person (together with their family and advocates if necessary) develops their own vision for their future and has influence over their allocated funding and other resources to craft a unique support arrangement that is personally relevant and fulfilling. In this sense no two individuals supported by One by One do anything together because they want different things out of life. The individuals supported have now taken up many valued roles within the community that were previously not available because of the standardised or congregate supports generally offered by traditional services. Such individual roles include work, volunteering, further education, recreation, membership of specific interest groups etc. This has also led to the development of many valued skills, relationships and networks. For example one person was attending a congregate educational program and was not very satisfied with her life. Her passion was watching television and she thought an alternative was to stay home and watch soap operas all day! With some assistance from her family and the Project Coordinator she was able turn her passion into many valued roles. She is now an Usher and sells programs at a picture theatre amongst trying and pursuing many other interests in the community. As people and families did not want to become burdened with the fiscal and legal responsibilities of receiving their own funding directly, they employed a "host" agency (Melba Support Services). The host agency stays in the background while taking care of administration and legal requirements. The host agency has become a strong ally for the project and its vision. The people and families of One by One have demonstrated (over a five year period) that small grass roots efforts are sustainable, financially viable and often get closer to what is actually wanted and needed by people. Thus counter balancing the notion that services need to be large and maintain a corporate image to remain viable. It has also demonstrated that high degrees of influence/governance at both an individual and project level by people who have a disability and their families/advocates can be created and maintained via a hosting arrangement. Even though these particular families have been part of such a project for several years they have faced like all human beings many struggles and continue to seek guidance and advice from others in their search to achieve better. The PLA project has assisted One by One with the development of: an extensive agreement with their host agency (which has become a useful resource to others nationally and internationally), development of guiding principles, ongoing guidance and advice on a range of issues, evaluation, renewal and refocusing in regard to its guiding principles. The PLA Facilitator also provides support to the Coordinator of One by One in her unique role with individuals and families and attends monthly meeting with the One by One governance group. Night Life – Delia Fisher Chairperson of the Night-life Management Committee. (Delia was unable to present at the forums but below is a summary of the project). Night Life is an innovative, small, flexible night service that was designed and will be driven by people with physical disabilities. It will enable people with disabilities to not only remain in their own homes, but reduce the demands on aging families and loved ones, maintain people's independence, enable people to pursue work or study in the evenings or enjoy a social life in the evenings that most people take for granted and prevent the early admission to nursing home facilities often experienced by people with physical disabilities. It will also provide an emergency back up service. To date many traditional services do not provide such flexibility and often only provide support up until 10pm in the evenings. There has been much interest in this service from many members of the community. Night Life has also gained support from the Department of Human Services who understand that this is a necessary service and they have agreed to fund this project. In it’s initial stages Night-Life will operate from 6 pm to 6 am with 3 Mobile Support Workers (MSW) driving from home to home at scheduled times or when people call via phone or other device for assistance. MSWs will be rostered on 3 separate shifts during this period and be “on call” to receive and respond to requests. This scenario is predicated on approximately 33 people using the service and anticipating 70% usage of capacity. It also enables some overlap for peak periods. Power Pack, Leisure Networks Zane McKenzie, Jillian Evans and Colin Robson Leisure Networks’ Program 101 “PowerPack“ Community Access System What is PowerPack? Powerpack is a unique ‘Community Credit’ voucher system designed to enable a common point of exchange between people, disability services, businesses and other community organisations. Powerpack is a fantastic option for people who want a tailored assistance package that strikes a balance between support, independence, and individual choice. Leisure Networks recognises that the goals, needs and desires of people with disabilities are diverse. We believe that no single service, regardless of how large they grow or how many different programs and services they provide, can hope to reflect the number and range of options present in ‘the community’. Leisure Networks has therefore created a service that provides support and remains structured while providing almost limitless flexibility in order to preserve individual freedom and choice. By using the PowerPack Community Credit system, clients can adjust their program from month to month as their goals and aspirations change. In doing so, PowerPack enables young people to make choices and take measured risks that open up virtually limitless opportunities for their futures. Leisure Networks’ Approach Leisure Networks takes a strong community development and health promotion approach to its work. Whilst we believe in assisting individuals to access the community in order to reach their full potential, we also strongly believe in supporting and assisting the community sector to increase access for people of all abilities. We consider that this ‘dual’ approach is the most important factor in establishing successful, sustainable partnerships between people, their communities, and the disability service sector. The Powerpack Process – How does it work? 1. When people choose to become part of PowerPack, a member of the Leisure Networks Program 101 Team meets with them at a time and place that suits. At this meeting, the person’s goals and aspirations are assessed and needs are identified across areas such as: Physical Health Education Vocation Recreation Mental health Friendship Personal Fulfillment Communication Transport Personal Care Life Skills Sport 2. After this initial meeting, Leisure Networks’ Program 101 Staff identify community resources from our 100’s of community-based Powerpack ‘preferred providers’. A selection of services are then matched to meet individual clients’ requirements and desires. These services may include any of the following: Disability support services Counselors Employment Agencies Arts and entertainment facilities Social groups Cafes and other community meeting places Educational Institutions Sporting clubs Recreation facilities & providers Businesses Community services Government Services 3. An individual plan is developed for each client based upon their stated goals and the available services. Plans are made for how to access these services, when they will be accessed, and where they will be accessed. If clients require additional assistance to access particular services, extra individual or group support can be arranged through the FFYA support team or individual support workers (e.g., travel training, introductions and assistance with forms, etc.). 4. Each Client is then issued with a booklet containing an allocated number of Powerpack ‘Community Credit’ Vouchers redeemable at all Powerpack ‘Preferred provider’ services (e.g., personal care services, educational institutions, Neighbourhood Houses, etc.) 5. Each Powerpack Client is also enrolled in a budgeting course. This course instructs clients how to use the PowerPack system and how to develop individual plans based on their own goals and objectives. It also encourages clients to consider using their own resources in combination with those that they access through the Powerpack system. 6. Once Clients are underway with the Powerpack system, each client’s progress, goals and use of the PowerPack ‘community credit’ system is then reviewed monthly. PowerPack Clients are also offered: On-going weekly budgeting and planning support. Ability to ‘pool’ credits together with other clients to purchase services. Ability to ‘bank’ credits over periods of time. Brokerage to other disability services (e.g., day programs, etc.). Tailored vocational and life-skills courses Employment services. Access to a Powerpack Backpack The PowerPack Backpack – What’s in it? Clients who are part of the Futures for Young Adults Powerpack system are provided with a Leisure Networks ‘PowerPack’ Backpack. This backpack is updated every month and contains a range of items to help clients organise themselves, their lives and their activities. Included are; • Diary, Pens & Notebooks • A large magnet listing important telephone numbers (e.g., Leisure Networks, emergency, taxi service, etc.) • A personal hygiene & toiletries pack • A PowerPack Identification lanyard • A $20 public telephone card • A ‘10,000 Steps’ pedometer • Transport timetables • A Community Credit voucher booklet containing an allocated number of ‘community credits’ redeemable at over 160 listed Powerpack ‘preferred providers’. Better Reporting and More Accountability The PowerPack Community Access System provides comprehensive monthly activity statements for each individual FFYA client. These activity statements clearly demonstrate the areas of transition that young people have been involved with through their tailored support package. Moreover, this data can be quickly analysed to show those areas of the person’s program that they are mastering or require on-going assistance with. Figure 1. Example of monthly resource expenditure for sample client, ZR PowerPack’s ability to track changes in resource usage over time also adds to the accountability of ‘process’ that differentiates it as a transition program rather than a static program. It clearly identifies those individuals who are ready to move to alternative support options (e.g., Commonwealth, Support and Choice, etc.) and provides them with the tools and skills to move forward. What Are the Challenges for Powerpack? Powerpack is a new way of working. It provides a number of challenges for clients, services, and the way the disability sector operates. Trust: The nature of PowerPack is that clients are given responsibility to manage a proportion of the resources available to them through the disability support sector. Therefore, services need to trust that clients utilising Powerpack will largely follow-through with the application of their resources toward stated goals and objectives contained within their tailored individual support plans. In cases where clients’ patterns of resource expenditure do not match their planned objectives, it will be quickly identified through PowerPack’s accounting and reporting system. Discussion will then occur between Leisure Networks and the client regarding goals / objectives at their monthly meeting. Where closer scrutiny between individual plans and expenditure is required, measures can be taken to either shorten review timelines and/or reduce the availability of community credits to clients (this may be achieved through pre-purchasing services from Powerpack ‘preferred providers’). Services, families and individuals must also trust that through experience, resources, and education, generic community services will be increasingly able to meet a number of the needs of people with disabilities. For example, this may include the ability of generic sporting groups to provide social or respite opportunities, the ability of mainstream education institutions to provide training opportunities, or the ability of small businesses to provide workplace training and experience. With shift away from reliance upon the disability sector to provide for all aspects of an individual’s life, also comes recognition that the sector has a responsibility to resource communities with the skills and information they require to involve people with disabilities in their thinking, activities, and operations. Power: Services using the Powerpack system divest power and responsibility to clients in their decision-making and choice of activities. This means that services no longer simply offer a range of activities that they design, run, and deliver between regular hours. Rather, options delivered by disability services (e.g., day programs, recreation programs, etc.) must be significantly supplemented by also providing access to as many generic community options as possible. The great diversity of community activities available to clients through PowerPack means that clients are the controllers of their individual plans on a month-to-month basis. That is, they choose what they do, when they do it, and how they do it. The role of the Service, therefore, is not to deliver a program to clients, but to assist each client to design and enact their own program based on their goals and resources. Successes of PowerPack Powerpack actively promotes people with disabilities’ economic and social participation in the community. It encourages a non-dependence on the disability service sector whilst also tangibly promoting the concept that ‘good access is good business’. Powerpack opens up a new and exciting era for partnerships between people with disabilities and a variety of community organisations. Here is a list of just some of the successes of the PowerPack system so far: • Working with each young person to look at their community credit use has led to a huge diversification of the services that are accessed and an expansion of individuals’ personal networks. • PowerPack has reduced transport costs by around 50% as people begin to make more informed choices of the resources available to them through the system. • Groups of people who utilise the Powerpack system are getting together naturally as friends and ‘pooling’ their resources to access entertainment and social activities, often independent of Disability Service Support. • Whilst community credits can be used to access day services or programs, few young people have opted for this choice so far. This means that young people with disabilities are meeting their needs and desires through accessing generic community organisations. • The budgeting education component of PowerPack has been necessary and extremely beneficial as individuals have learned to plan and prioritise around their goals, needs and desires. • Families have been extremely supportive of PowerPack due to the flexibility and support it offers. • The self-esteem of young people has noticeably improved with the increased control they have over their lives and the way they interact with the disability support system. • Families have a better understanding of available options in their local and regional communities that are external to the disability support system. • The project has placed the use of resources back into the context of people’s lives and roles within their social groups and families. • This has reinforced the holistic approach that Leisure Networks has sought to take in relation to supporting young people. Getting Involved with Powerpack There are two main methods that Services and Clients can use to get involved in PowerPack. Method 1 - Brokerage: Services (e.g., Respite, etc.) can purchase the Powerpack system from Leisure Networks for their own client group. A standard administration fee of 20% applies to services that purchase Powerpack with the remaining resources converted to Powerpack Community Credit Vouchers. Alternatively, services can also choose to increase the amount of administrative support and reporting they would like to receive as a percentage of their purchase price or add the Powerpack backpacks to their purchase. Method 2 – Direct Client Support In this method, Clients become a direct client of Leisure Networks through an individualised funding program such as Support and Choice or Futures For Young Adults, etc. More Information? If you would like more information about PowerPack or how it may be of benefit to you, your family or your service, please feel free to contact Colin Robson on 5222 3911 or e-mail colin@leisurenetworks.org. Initial Meeting Between Powerpack Service and Client Individual Goals and Objectives Plan Drawn up Between Service and Client Covering Life Areas Balance Between Pre-Purchase of Services and Community Credits Determined Powerpack BackPack and Community Credit Vouchers Issued for Month 1 Client Accesses pre-Purchased and Other Services Through Powerpack System Client Enrolled in Powerpack Planning and Budgeting Course On-going personal support offered to clients by PowerPack team. On-going personal support offered to ‘Preferred providers’ by PowerPack team. Monthly Review Meeting Conducted between PowerPack Service and Client. Monthly Accounting and Reports collected Through the Powerpack System. Adjustments made to client goals / PowerPack review process adjusted where required. Community Credit Vouchers Issued for Month 2 Active Support –Department of Human Services Georgia Hills, Project Leader, Active Support Introducing Person Centred Active Support Active Support is a model of support provision developed in the UK, which promotes participation in everyday activity, in the home and community, by people with severe and profound intellectual disabilities. This occurs through ongoing identification of opportunities for involvement in activities of everyday life combined with provision of appropriate support from staff, to enable effective participation to occur. Active Support promotes value-based outcomes, which emphasise; participation in all of the activities most people do, involvement with other people, and development of skills, interests and relationships which can only be realised by promoting engagement and participation (Jones, E. Power Point presentation ASSID 2005). Demonstrated lifestyle outcomes associated with Active Support for residents include: Greater engagement in activities, Dramatically decreased stereotypical behaviour, Better social integration, increased use of leisure and community activities, and fewer accidents, Better developed social networks, More opportunities for self determination, and Higher levels of satisfaction amongst residents. (R Stancliffe, Power Point presentation CIDA, 2004, Melbourne) In future Active Support could have application for work in community settings particularly in relation to working with and supporting families, addressing challenging behaviour and promoting ongoing skill development and life opportunities. The outcomes of Active Support have been favourably reviewed in literature in the UK since the mid 1980’s. Over the past few years Person Centred Active Support has been piloted in NSW and Victoria, in both Government and Community Service Organisations (CSO’s) accommodation services. In addition some CSO’s have implemented Person Centred Active Support methodology in their outreach and respite services. Evaluation of work conducted in this area in Australia is ongoing, with initial indications favourable of its applicability to our disability services context. The final evaluation of the 2005 Disability Services Division pilot of Person Centred Active Support in government operated community residential units is currently underway. This pilot was undertaken as one of a range of initiative to progress the vision of the Victorian State Disability Plan in disability accommodation services. In 2006, work in relation to Person Centred Active Support will focus on the Kew Residential Services Redevelopment and strengthening regional knowledge and practice. For further information or contacts please do not hesitate to contact Georgia Hills, Active Support Project Leader, Department of Human Services on 9854 1381. Department of Human Services Angela Tierwik and David Person Directed Planning and it’s role in Indiviualised Planning and Support “ Person (centred) planning is based on learning through shared action, about finding creative solutions rather than fitting people into boxes and about problem solving and working together over time to create change in the person’s life, in the community and in organizations” (Person centred planning: Key features and approaches – Helen Sanderson Nov 2000). Victorian State Disability Plan 2002 – 2012 Vision for the future – that people with a disability have the same opportunities to fulfil their aspirations and participate in the life of the community. One of the key priority strategies in the State Disability Plan developed to achieve this vision is to “reorient disability supports”. The individualised planning and support approach aims to do this by ensuring the person with a disability has more control and by encouraging community inclusion and the sharing of power. Key features of an individualised planning and support approach • Focus on the person’s capabilities and aspirations. • Ensuring the person directs, as much as possible, the development of their plan. • Emphasis on putting the plan into action not just service delivery. • Importance placed on maintaining and developing the person’s informal and formal networks in their local community. • Flexibility to ensure supports work towards the person’s goals. • Funded disability supports considered as just one type of many supports a person may need. Person Centred v Person Directed planning - Both are individualised, flexible and are about maintaining and developing informal and formal networks. - Both are achieved by engaging a person and their support networks and working with them to plan for what everyone believes is in the person’s best interests. - Person Directed Planning takes the process one step further in that the person themselves makes the decisions about the planning process and the support network are there to provide support when needed in both the planning process and implementation of the plan. - Key Features of Person Centred/Directed Planning 1. The person is at the centre. 2. Family members and friends are partners in planning. 3. The plan reflects what is important to the person, their capacities and what support they require. 4. The plan results in actions that are about life, not just services and reflect what is possible, not just what is available. 5. The plan results in ongoing listening, learning and further action. (Helen Sanderson 2000) Individualised Planning and Support Planning Engagement Clarify current situation & supports Identify - Skills, strengths & capacities of the person - Their goals and aspirations. Develop a plan of attack, strategies and determine everyone’s roles in plan. Implementation Facilitate development of further supports/resources to achieve the person’s goals. These should be explored in the following order: 1. Natural – family, neighbours, networks 2. Generic – services that people without a disability would access. 3. Existing disability services 4. Paid supports Barriers to overcome Evaluation Review There are many different tools available to assist with the facilitation of a Person Directed Plan including: • Essential Lifestyle Plan (Michael Smull & Susan Burke-Harrison) • McGill Action Planning system (MAPs) (Marsha Forest, Jack Pearpoint, Judith Snow & John O’Brien) • Planning Alternative Tomorrows with Hope (PATH) (Jack Pearpoint, Marsha Forest & John O’Brien) • Personal Futures Planning (Beth Mount & John O’Brien) Essential Lifestyle Plan • Focuses on a person’s life now and how it can be improved. • Finds out who and what is important to the person. • Finds out what support is needed to have a good quality of life. • Finds out what makes/doesn’t make sense now but doesn’t look into the person’s future dreams. MAPS (McGills Action Planning System) • The history of the person • Their dreams • Their nightmares • Who is the person? • What are their unique strengths and gifts? • What do we need to do to avoid the nightmare and reach the dream? • What is a plan of action? PATH (Planning Alternative Tomorrows with Hope) Some things to consider and discuss with person (& perhaps significant others) before planning meeting. • Reason for the planning meeting/s • Ways to make increase the person’s involvement/feelings of ownership (ie; using photos, compic, video, communication assessment) • Who does he/she want to invite (circle of support) • How many meetings? • What things would they like to include/not include? • Where & when would they like the meeting to be? • What food (if any)? • How would they like the meeting to proceed? • Invitations? Ideas for information that could be included in a Person Directed Plan • People in my life • Characteristics of people who support me best • What’s most important in my life right now • Great things about me! • My favourite things • Least favourite things • Great day/Bad day • Staying safe and healthy • Things that haven’t worked well in the past • Things to figure out • Hopes & Dreams • Worries • Action Plan Some things to consider and discuss with person (& perhaps significant others) before planning meeting. • Reason for the planning meeting/s • Ways to make increase the person’s involvement/feelings of ownership (ie; using photos, compic, video, communication assessment) • Who does he/she want to invite (circle of support) • How many meetings? • What things would they like to include/not include? • Where & when would they like the meeting to be? • What food (if any)? • How would they like the meeting to proceed? • Invitations? Some other information that could be included: • How I communicate. - Things that may cause anxiety or tension - Expressions may include - What others should do. • What makes/doesn’t make sense - from person’s perspective - from other’s perspectives • What people need to know and do to support me. • Good day / Bad day • Current daily routine • What I would like my routine to be • Positive rituals A Plan is Not an Outcome! Although the planning process is extremely important, it’s easy for workers to put all their energy into creating a plan and then sit back, breathe a sigh of relief and think their work is done. BUT A plan that is not implemented properly can be worse than no plan at all. The greatest challenge of IP&S lies not in the development of initial plans but in the implementation of those plans and in the creating of changes necessary for the realization of dreams and personal goals. The plan is just an initial step in the journey and will need to be reviewed as the person moves forward and develops new goals.