Personalised Support
Personalised Support
Personalised Support
How to provide high quality support to people with complex and challenging needs - learning from Partners for Inclusion
by Julia Fitzpatrick
Personalised Support
How to provide high quality support to people with complex and challenging needs learning from Partners for Inclusion by Julia Fitzpatrick
Publishing information
Personalised Support Julia Fitzpatrick 2010 Foreword Jim Mansell 2010 Conclusion Simon Duffy 2010 All Diagrams Simon Duffy 2010 Edited by Simon Duffy Designed by Henry Iles: www.henryiles.com All rights reserved. First published July 2010 Reprinted October 2012 ISBN print: 9781907790058 ISBN download: 9781907790041 68 pp. No part of this book may be reproduced in any form without permission from the publisher, except for the quotation of brief passages in reviews. Personalised Support is published by The Centre for Welfare Reform. The Centre for Welfare Reform 36 Rose Hill Drive Sheffield South Yorkshire S20 5PN The publication is free to download from: www.centreforwelfarereform.org Printed copies of the book are available to purchase from: www.partnersforinclusion.org
Contents
Foreword ........................................................................................................................................... 1 Alisons Story .............................................................................................................................. 3 Summary ........................................................................................................................................... 6 7 Key Elements ....................................................................................................................... 9 1. Commitment to Citizenship ..................................................................... 11 2. Individual Service Design ............................................................................ 17
Useful Questions for Service Design ........................................................... 22
4. Individualised Support .................................................................................... 28 5. Individual Funding ................................................................................................. 32 6. Power with the Person .................................................................................... 39 7. Creative Community ............................................................................................. 42 Organisational Development, Future Challenges, Conclusion and Resources ....................................... 51 Organisational Development ......................................................................... 53 Future Challenges ............................................................................................................ 56 Conclusion . .................................................................................................................................. 59 Useful Resources ............................................................................................................... 60
Foreword
Foreword
Life for people with major disabilities in good services will often look quite ordinary, but this ordinariness will be the product of a great deal of careful planning and management.
(Mansell Report, 1993 and 2007, paragraph 41)
The rhetoric of community living for people with learning disabilities emphasises ordinariness. The central message has been that people can be liberated by moving away from servicedominated structures and ideologies towards an approach founded on helping people to be valued and supported by their family and members of their local community. The subtleties and complexities of this message have often not been heard or understood, so that it has been assumed that providing staff support in a house or an apartment in the community is all that is needed to ensure people have a good quality of life. This is not necessarily true, especially not for people with learning disabilities who have extra needs due to the severity of their intellectual impairment or the presence of other disabilities or problems. Although community living turns out to be, in general, better than institutional care it often falls far short of the quality that could be achieved. The most critical element in what makes the difference between exemplary and mediocre performance is the extent to which staff enable the people they support to live a good life: it is the quality of staff support that matters most. What makes this account of the work of Partners for Inclusion special is that it begins to articulate the detail of how a person-centred service operates to support people with complex needs. Here the principle that everyone should have a good life in the community, whatever their level of disability or the nature of their problems, and the determination to make this a reality, are followed through by robust practical arrangements which illustrate how to do it. Here principles and commitment are backed up with a detailed way of working built around each person to enable them to realise the opportunities presented by home and community. The account presented here illustrates two overarching principles of organisation in Partners for Inclusion. First, everything is referenced to and judged against its impact on the quality of life of the people the organisation supports; this means not only the way staff work, but how human resources, housing, finance and monitoring are carried out and how the organisation is designed. Instead of expecting people to fit in to arrangements designed for administrative ease, the organisation does its best to design arrangements around the people it supports. Second, there is a high level of attention to the detail of how people want to be supported. Instead of leaving staff to work things out for themselves, risking inconsistency and ineffectiveness, Partners for Inclusion pays attention to thinking through what each person needs and to continually adapting and refining the support provided.
Good descriptions like this are an important way of helping everyone understand what has to be done to support people well in the community. This booklet will be of relevance to people using services or their advocates and their families in working out what kind of help they want. It will be useful to people providing services to work out how to do a good job. It will be useful to commissioners in local authorities trying to move towards personalised services, and it will be useful to regulators in thinking about what really makes a difference to the quality of peoples lives. Jim Mansell Director and Professor of the Applied Psychology of Learning Disability University of Kent
Alisons Story
Alisons Story
When Alison makes eye contact, her whole face lights up and its wonderful. But since she was a couple of years old shes kept this for special occasions. For everyday situations, although she understands a lot of what you are saying, she relies on simple body language to let you know what she thinks. She takes your hands or she walks away, she smiles or she cries. Occasionally she will use her own hand signs.
If she had been born in a different family or a different time, this would have severely restricted her opportunities and experiences. Instead, her family have respected who she is now without assuming that she will never change. Alison made a lot of demands on family life - as Astra, her mother, points out, now shes living in her own flat there are five people doing the job I was doing. But her family was resilient enough not to get stuck in a siege mentality. Instead, they worked around Alisons preferences and habits when they reasonably could but made it clear what wasnt acceptable. This quiet sense of Im OK, youre OK has helped Alison grow up as a secure young woman. The same approach has worked well with the service system. The family has been clear about the help they needed and asked for it without feeling dependent or aggrieved - and have been able to maintain a respectful partnership with professionals over many years.
Alisons nursery teacher Margaret Mair was a great influence on her and still keeps in touch with the family every Christmas. Alisons first school specialised in teaching children with a hearing impairment but for Ken and Astra what was more important initially was the Ready Brek factor a warm glow they felt as soon as they walked into the school. By the end of primary school, though, she was falling behind because of low expectations from the staff. Family life for Alison included the usual trips to museums and shops and cafes, though films and the theatre didnt do anything for her. It was on a trip to Disneyworld in Florida that Alison showed her determination to be part of the crew. When her brother and cousins reached the top of the queue to be photographed with Pluto, she wriggled out of her buggy and confidently made her way past the rest of the line to join them. Ken and Astra were always determined that Stephen would be Alisons brother more than her carer so much so that when Alison started spending a few days away from home every few weeks to give her mum a break from the caring they made a point of not doing much special with Stephen. Alisons key teacher at secondary school was Catherine Brown who knew how to bring out the best in her, and Alison flourished with her determined support. Communication between school and home improved, she tried out all sorts of new activities and her confidence grew. As school-leaving time approached, Alisons future was uncertain. Full-time education in college wasnt a viable option but through the Independent Living Fund Alison was given 15 hours individual support each week. Ken and Astra chose to use this to employ Partners for Inclusion to support Alison after school and on Saturdays, and Alisons horizons expanded further. The young women from Partners for Inclusion gave Alison a crash course in being 18. The house filled with music, she got some decent clothes (theres no way shes going out in that!), tried some new foods, met Bacardi breezers, got her nails painted and listened to endless chat about TV and fashion. She went on holiday without her parents, and for someone supposed not to enjoy loud music and crowded places had a pretty good time at the ice rink. Meanwhile, Astra had one of those light bulb moments when she went on a course and met a mum whose daughter had moved into her own flat. Her first reaction was youre telling me Alison could move out of here and wed be lumbered with Stephen! but as time went on the idea made more and more sense. While it was great having the support staff and they were very respectful of the house rules, it was hard to combine a staff workplace with a family home. Astra felt restricted when the staff were there, but when they left it felt like Alison was restricted, and left alone with the wrinklies.
Alisons Story
So with support from social work and housing, and a great deal of financial creativity from Partners for Inclusion, a package was put together which would allow Alison to have her own flat. Alison could have had direct payments but for Astra and Ken having Partners for Inclusion manage the money was a weight taken off their shoulders. Stephen helped Alison choose a flat near the shore with its own wee garden, and Alison spent the first six months trailing every visitor in and out of every room. She does still go back to her parents house from time to time, but when shes had enough she takes her support worker to the front door to make it clear that shes going home. Astra started as an unofficial team leader, training the staff and describing what works for Alison. Over time, the team trained new members, with Astra as an occasional coach. Now Astra and Ken cheerfully admit that Alisons moved on and the team know more about her current likes and dislikes than they do (as they say, just like Stephens wife knows todays Stephen better than they do). Alison now has a few friends of her own that they have never met, friends of her support workers, and is doing things she would never have done at home from washing up and making soup to choosing what to wear and eating by herself. Astra, Ken and Stephen can be Alisons family but not her carers - and they remain her advocates. Over time, they hope that the business of looking out for Alison can be shared by a group of people. This group can hold Partners for Inclusion - or any other service provider - to account and, as people who have known Alison for years, can also provide the long view.
Summary
Personalised Support is a new way of supporting people with complex and challenging needs to live their own life, on their own terms, but as active citizens.
Personalised Support was developed in Scotland, in 1996, to provide support to people who were leaving institutions and moving into their own homes. It is a radical step forward from the standardised and inflexible support that is often provided by Community Care services. In fact these early champions of Personalised Support were also the same people who went onto develop ideas like Individual Budgets and Self-Directed Support. Personalised Support demands 7 key elements:
1. Commitment to Citizenship - Above all else the organisation has to commit itself to seeing the people they support as full citizens, people with rights, people with potential, people with full lives to be led and supported. Without this vision and these values no practical systems will work. 2. Individual Service Design - Each individual is unique, and so, each support service must be unique. This means helping the person to design support that reflects their individuality, their relationships, their neighbourhood and their future plans. Each design is different, but each design supports the person to express their citizenship their way. 3. Individualised Policies - Systems and rules need to be worked out, developed and reviewed at the level of the individual. Universal rules for the organisation are kept to a minimum and only set a framework within which individual policies are agreed. This is the only way of ensuring that people can maximise outcomes and manage risk effectively. 4. Individualised Support - High quality personalised support demands that people get support from the people who are right for them. This is much more about values, personality and interests than it is to do with formal qualifications, although Partners for Inclusion do work to the rules defined by the Scottish Social Services Council and meets their requirements. This requires a radical change in personnel policy. 5. Individual Funding - It is impossible to provide flexible support to individuals if their money is used to fund blocks of services. Personalised Support requires organisations to use Individual Service Funds to manage and protect peoples individual budgets and ensure that money is used flexibly for the best possible outcome. 6. Power with the Person - And each arrangement must ultimately be authorised by the person or those who can stand by the person and help them make the best decisions
Summary
for themselves. For the organisation this means involving the individual, their family or other representatives in all the critical decisions that concern their life. 7. Creative Community - All these systems only come to life when they are used by a real community of people - both inside and outside the organisation -who can think creatively. This demands real value-based leadership and the development of trust based upon real understanding of needs and problems.
This is not a pipe-dream. Personalised Support has been working successfully in Scotland for 15 years, but only a few organisations have really taken up the challenge to work in this new way. In fact, even while personalisation has started to become recognised as one of the most important themes in reforming public services there have been few efforts to really change how support is offered on the ground. Too often disabled people, older people or people with mental health problems are being asked to manage direct payments or take on other onerous responsibilities that are simply not necessary. Personalised Support offers a powerful and practical model for transforming the role of organisations that provide care and support, giving people the flexibility and control they value, without unnecessary complexity. This book describes the work of one highly effective organisation; but it also provides a template which could be used by many others - to bring about real change.
Authority
Support
Policy
Understanding
Contribution
Direction
Design
Beliefs
Creativity
Trust Support
Accountability Funding
Money
Leadership
Home
7 Key Elements
1. Commitment to Citizenship
1. Commitment to Citizenship
Personalised Support developed from the vision and values of those individuals, families and professionals who did not want to see people with complex and challenging needs offered limited, institutionalised solutions.
Over time we have discovered that when we give people the right kind of support:
People do not need to be excluded or segregated Everyone can enjoy basic human rights Everyone has a positive contribution to make Everyone can be a full citizen
11
Partners for Inclusion is an organisation designed for a very particular purpose. Its structure and culture would not suit a law firm or a train company. Partners for Inclusion was designed, like Inclusion Glasgow, to deliver Personalised Support. The organisational design is highly suited to provide high quality support and in a way which gives people power, control and flexibility, but which doesnt require people to manage direct payments or employ their own staff team. For the person it is personalisation made simple; but of course, behind the scenes these benefits can only be achieved by hard work and careful planning - at every level. Of course Personalised Support did not develop in a vacuum. It was developed as a response to older models of support and their limitations. So it may be helpful to begin our exploration of Personalised Support by reflecting on the longer history of its development.
12
1. Commitment to Citizenship
to create a glass wall between people and the community in which they lived. At best the culture was benevolent but paternalistic; at worst it was institutional and damaging. Moreover the process of de-institutionalisation was painful and protracted, with budgets, professional status and power clinging to the rump of the hospital system. For a long time many people still assumed that there would still be a population of people whose needs were too complex to be met in the community.
Supported Living marked an important step forward in thinking about support for people with complex needs. It is a human-rights perspective, which starts with the assumption that people have the same rights as everyone else. It demands a radical change in thinking and practice. But it has proved very difficult to achieve. There has been some real progress; changes in funding systems and regulation have led to an increased numbers of people leaving residential care and moving into their own homes. Many organisations have tried to help people do their own person-centred plans, moving away from institutionally driven care plans. Some people have managed to live better and more interesting lives. But even where organisations have wanted to make the change towards providing more appropriate support they have found that they have faced many challenges:
Model-first designs - Organisations are used to thinking in terms of standard models of support. The model comes first, then people need to fit within that model. New
13
ways of working were difficult to adopt, especially when funders are nervous of change. Generic staffing - Organisations primarily employ staff and then assign them to work with different people. Giving people choice over their staff often runs contrary to established personnel systems. Universal policies & procedures - Organisations put in place policies and procedures which are not sensitive to differences in need or context. Often sensible changes are impossible because of policies that are applied too simplistically. Block funding - Many services are funded in blocks and the person cannot shape or control how their funding is used. Even when individual funding is used the person would often not be given any discretion in how it was used - it was treated as the organisations money. Hierarchical accountability - Bureaucratic and hierarchical systems of control are highly valued by the wider system. Organisations are expected to be accountable to statutory funders, but not to individuals or their families.
Perhaps more importantly than any of these factors was the fact that Supported Living, and the focus on achieving real citizenship, demanded a complete change in culture and belief. Institutional thinking and practices are in fact rooted in widespread negative assumptions about people with complex needs:
People with complex needs or challenging behaviour dont have gifts that they can bring to the wider community. The family and friends of people with complex needs are likely to be bad or exploitative. Communities are hostile to people with complex needs and will never welcome them. People with complex needs and their families cant be trusted to exercise choice and control.
These negative beliefs are highly prevalent in society as a whole, even if they are not usually expressed as strongly as this. But it is very hard to build the radically new ways of working demanded by the principles of Supported Living into your organisation when these beliefs are active.
1.4 Personalisation
Today we are entering a new phase in thinking and practice, which has become known as Personalisation. Personalisation is an attempt to radically rethink the principles upon which the whole welfare state has been designed, and it starts from beliefs and values which are the complete opposite of those which still corrode society today:
Every individual is unique, and has their own unique set of gifts and capacities which we should welcome. Love, family and friends are vital to our existence and we must organise things so we can build and sustain these vital relationships.
14
1. Commitment to Citizenship
Communities will become better and more vital when they welcome and include the gifts of all their members. Everyone has both the right and the responsibility to control and shape their own life, with help from those they value.
One way to think of this new approach is to recognise that each of us builds a life and meaning for ourselves using our real wealth (Duffy, 2010b). This is not just about money, its about combining and growing these four capabilities:
Gifts - our skills, strengths and needs Relationships - our family, friends and peers Community - all our community offers us Resources - our means to set our own path and achieve our goals
Furthermore, at the heart of real wealth must be the personal resilience or spirit which enables us to see and use all that we can make use of - in their various forms. In Scotland in 1996 a group of professionals and families gathered together to try and do something different. They were frustrated by the slow pace of change and wanted to see real progress. Inspired by the ideals of citizenship, inclusion and a commitment to human rights they wanted to design organisations that would properly respect and support people with complex and challenging needs. For this group of leaders the ideal of helping people achieve real citizenship had became increasingly important and they were convinced that they could develop approaches which
Relationships
Community
Resilience
+
Gifts
Figure 2 Real Wealth
Resources
15
made a real difference and could genuinely shift power and control to disabled people - even people with the most complex needs. This community included Simon Duffy and Frances Brown of Inclusion Glasgow, John Dalrymple and Gina Hagan of Support for Ordinary Living, Sam Smith of C-Change and, Doreen Kelly, founder of Partners for Inclusion and many more people and organisations, including Altrum, Diversity Matters and Scottish Human Services. This book focuses on Partners for Inclusion and the work of Doreen Kelly in particular, but it is rooted in a whole community of people who were and are committed to developing Personalised Support. They realised that they would have to move beyond an idealistic commitment to citizenship. Instead they had to develop the real systems that could offer flexible and personalised support. They also found that, in order to bring these principles and systems to life took real leadership and required the development of a genuinely creative community (see Figure 3). Importantly these leaders focused their efforts particularly on those people whom others had struggled to support in the community. Instead of treating Personalised Support as only being relevant for those who were easiest to support they wanted to demonstrate that citizenship could be real for everyone - however challenging or complex their needs. This meant focusing on key groups:
People with challenging behaviour who were living in institutional settings People experiencing severe mental health problems People with complex and multiple impairments People in danger of being sent to live away from their home communities in to special units, homes or residential colleges
This does not mean Personalised Support is just for people with these levels of need. But learning how to support people with these needs is invaluable for understanding how Personalised Support can really be achieved for everyone.
Individualised Structures
+ Creative Community
16
This framework, the Keys to Citizenship framework (Duffy, 2002) is what shapes the Individual Service Design. In respect of each key Partners for Inclusion will work with the individual to help them get the right support arrangement, to suit their life and their community.
17
Sometimes, when Mary-Janes mental health was poor she would set fire to her own home. She needed very specific housing, which would not put other people at risk but which also suited her own needs and preferences. But although she needed a very specific home she did not want to own that home (partly because she was more likely to damage something that she felt was
18
her property when she was feeling bad about herself). So No problem is too big, Partners for Inclusion, after finding a suitable home worked with a housing association who purchased the home and no needs too complex, for then rented it back to Mary-Jane. an individualised service Jonathan wanted his independence from hospital but in - in fact it is the in-built the past he had stayed up at night and played loud music and flexibility of the individual this led to lots of neighbour complaints which eventually led to him being admitted to hospital. He was also insistent service that allows change that he did not want anyone sleeping over in his house and as necessary. did not accept that this had been a problem in the past. So Partners for Inclusion worked with the local authority and Doreen Kelly, Partners for Inclusion organised renting a second flat in the block where Jonathan was to live. They then organised for someone to live in that flat as a supportive neighbour able to help Jonathan connect to his neighbours and intervene if problems started to arise. In time, with the success of the arrangement, the tenancy was eventually given to the supportive neighbour directly. Perhaps even more important than these examples of creativity is the creativity that goes into developing detailed and thoughtful Working Policies (we will explore this in section 3).
19
The Individual Service Design needs to be reviewed at least once a year, as part of an individual planning day, and that other structures - meeting time, support and supervision - are essential for keeping its momentum.
Any of these questions and approaches can be useful, so it is a matter of finding an intelligent and balanced approach to exploring what will be the right set of questions in the light of the priorities and understanding of those involved.
20
Only when there is a sufficient level of shared understanding about the person, their needs and their desires, is it possible to move on to the actual process of developing a service design. However it is often the case that, by the second half of the day people are ready to look at some of the key questions:
1. Authority - How will the person remain in control of their life? What support is required with communication? Is any representation required? 2. Direction - What are the persons desires and hopes for the future? How can they be best supported to plan and achieve their goals? 3. Money - How much money is available? 4. Home - What kind of home do they want or need? Where does it make sense for them to live? Would they like to share their home with anyone? Would any equipment, adaptation or IT be useful? 5. Support - What kind of support is required? How often and when is help needed? What kind of person should provide help? 6. Contribution - How will the person live? What relationships need to be maintained or strengthened? What interests or jobs do they want to pursue?
By understanding the answers to these questions and by thinking through what can be achieved for real, the facilitator helps the whole group, and the person in particular, think through their options and balance different considerations. In the light of this it is often useful to end by looking at the big themes from the day, and developing aims and objectives for the service so that the service provider knows what their job is what is expected of them and what they should be trying to achieve. After the meeting a detailed Individual Service Design can then be written up and examined in more detail after the day. On the following two pages we have included many of the critical questions that have proved useful when developing Individual Service Designs.
21
22
23
3. Individualised Policies
In order to provide Personalised Support it is not good enough to work to standardised systems. Each person needs policies that make sense for them. This means developing an Individual Working Policy. This is a policy which is not only individual to the person, it is also a policy which is actively reviewed and amended in the light of experience - a Working Policy.
24
3. Individualised Policies
It also gives John the clear boundaries he needs and the security of knowing these will not be changed by anything he does.
25
In difficult times
How John shows hes having a bad time:
Hell argue a lot and be confrontational about minor issues. He gets angry. He cries. He cuts himself. He looks and is grumpy. He is short tempered. He buys lots of over the counter medicines, especially aspirin. He takes too many aspirin. He says he feels frightened. He says he has nightmares/ isnt sleeping well. He wakens early.
26
He needs to talk about the past. He sets small fires. He says hes stopped taking his prescribed medication. He takes too much of his prescribed medication. He threatens to walk into the sea. He goes to the Accident & Emergency departments demanding to be admitted. He demands medical/psychiatric interventions. Hell say he doesnt want to live in his house. He doesnt want to do things he usually enjoys.
Hell rearrange his furniture lots. Hell miss appointments/make excessive appointments with GP. He takes more risks with his diabetes e.g. skips meals or eats large amounts, especially sweets and cakes. He goes back to bed in the morning or goes to bed early at night (8pmish). Hell want to be alone but not want you to leave completely. He threatens to harm himself. He gets emotionally distressed. He drinks more alcohol than hes agreed is reasonable for him (2 glasses wine).
27
4. Individualised Support
Although an Individual Service Design can include many elements it is always the case that getting the staff, the people, right will make the most difference to the success of any arrangement. This makes individualised support an essential part of Personalised Support, because if it is impossible to put in place the right people, offering the right support, then problems are bound to arise.
As an organisation, Partners for Inclusions structure and staff roles come primarily from thinking about what one person needs to get good support, and working from there. Usually this means that each person has their own staff team. This does not mean that the organisation employs people and then appoints them to work with the individual - instead each person has his or her own staff team, selected just for them. Staff are picked for, with and, wherever possible, by that person and their representative. Recruitment information and processes are tailored to that person. Staff members are mostly recruited only to work with one person. If someone is also recruited for another persons team, that role will be different, and may involve different skills, responsibilities and a higher or lower rate of pay. The worker would then have 2 contracts of employment. Most, but not all, also have a Team Leader who is part of their support team with additional responsibilities for co-ordinating and supporting staff. This team also needs support, guidance and coaching - hence there is also an important role for a Service Leader who offers support and coaching for between 6 and 8 staff teams. The Service Leader also manages and maintains the relationships and contractual requirements associated with each persons support. Finally, Service Leaders need a couple of things to do their job. They need administration, recruitment, staff development and financial services, which are provided by Partners for Inclusions central service staff. They also need organisational leadership and governance. The small senior leadership team is expected to nurture organisational values, culture and learning, hold the roof up over peoples heads at difficult times, represent and account for the organisation in the wider world, maintain organisational memory and provide a space and framework for reflection and judgement.
28
4. Individualised Support
29
Partners for Inclusion has developed contractual terms and conditions to support the appointment of staff in a way which makes most sense for the person and their support plan. There are 3 types of employment contract in use:
Contract hours: for staff employed to work for a fixed number of hours - full or part time. Variable hours: which does not guarantee the hours for the staff member but will set a minimum amount. Ad-hoc hours: staff recruited to work with the person from time to time, but where there is no guaranteed or minimum hours of work.
30
4. Individualised Support
The Individual Service Design details particular skills and qualities needed for the support workers to support John in managing his stress levels, and to respond when he is distressed. The budgeting process and staff retention strategy worked out by the team with John and his family, means that the terms and conditions for staff include an above average annual leave entitlement, and Johns budget also includes a sum for his own counsellor and staff time for a regular meeting with a team counsellor. If John did not receive this kind of flexible Personalised Support it is highly likely that he would be living in a specialist medium secure unit, which typically costs between 120,000 and 150,000.
31
5. Individual Funding
Personalised Support is impossible without individual funding. For if you cannot take your funding, transfer it to another organisation, or use it to reshape your support you are effectively tied into arrangements that suit other people - but will only partially suit you. The systems developed in Scotland to give the necessary flexibility to support are highly innovative and were critical to the later development of individual budgets.
32
5. Individual Funding
The majority of Partners for Inclusions income is Restricted Funding - that is income which must only be used for the benefit of the person. This is allocated to an Individual Service Fund to meet all the direct and indirect costs associated with supporting that person. The internal financial policies permit only some of this individual income to be transferred from the ISF into unrestricted Central Management and Service Co-ordination cost centres to meet the pooled, or shared, costs of administration, overheads, training and recruitment, service co-ordination and development. The Service co-ordination fee meets the costs of service planning, quality assurance and monitoring, support and supervision of the teams, team building, problem solving and individual service development. Each person and their staff team need and benefit from this input.
Local Authority Contracts Supporting People Direct Payments Independent Living Fund
Restricted Fund
33
Partners for Inclusion has found that people whose needs are complex but who need less paid support, still need as much service leadership and co-ordination than those who have a higher level of direct support. At the moment therefore this is a fixed fee. This does present dilemmas and a challenge: on the surface it makes an expensive service for someone who may not need intensive support on a daily basis, but the local authorities have recognised the benefits of the more developmental and preventative approach it supports. For the most part Partners for Inclusion is supporting people with a high level of support needs, who have previously challenged services leading to a history of exclusion. However it may have to rethink this calculation as individuals achieve direct purchasing power. Each Individual Service Fund also makes an individually negotiated annual contribution towards a General Service Fund (GSF). This is a designated fund used for any person that may need additional resources that have not been included in their budget. For example a person may unexpectedly need a significant increase for a temporary period to cope with a big change in their life, or the staff team may have unexpectedly high absence. Effectively the GSF acts as an internal insurance system. Conceptually this approach has been very important that while each individual has their own funds, there is a value in paying into a common good fund, from which people will derive different benefits depending on their needs. The payments are not ring fenced for that person. In practice, Partners for Inclusions experience has been that personally designed support within an individual budget, and creative approaches by teams has meant fewer calls on the GSF than budgeted. The Fund is therefore currently at a level which can sustain demands on it without further contributions, and so individual service funds do not currently include contributions to the GSF. The balance remaining in the ISF is then ring fenced for the person and is used only for direct support costs such as support workers salaries, travel and other expenses. This structure and associated accounting systems adapt to different contractual arrangements:
Spot purchase contracts - where the contract sum becomes an Individual Service Fund. Block contracts - which are split, according to peoples needs, into Individual Service Funds for each person included in the contract. Direct Payments - where the agreed payment becomes an Individual Service Fund.
Obviously in England, which is now allocating people individual budgets, this structure would also allow people to ask the service provider to manage the budget for them. The person may also have other streams for funding, such as the Independent Living Fund (ILF) which they can add into their fund. In the block contract arrangement, it is clearly agreed with the local authority that this should not be used to deny the person the right to change support provider if they wish to do so, or to elect to take and manage the money in a different way such as a direct payment. In addition to these over-arching rules and systems there a number of other tools and processes that are used to underpin this way of working and to ensure financial safeguards and thorough audit trails.
34
5. Individual Funding
The process imposes a discipline on all involved to manage within the means available, and to plan for contingencies. If there are budget savings during the year, for example because there has been no staff sickness, the team decides how to reallocate the funds with reference to the support plan. If the budget is overspent in one quarter, the team has to decide how to deal with this. For example, Harriet had not had a holiday for two years and was very keen to take a trip abroad. In discussion with her family, the team proposed a budget that reduced her variable staff hours for 6 months to create funding which will cover the travel and accommodation costs
35
for the staff support that she will need to go on holiday. To support this the team worked to support Harriet in doing some voluntary work at a local business centre. This slowly developed so that she built up to two hours at a time twice a week when she is supported by the Centres administrator rather than Partners for Inclusion. The team demonstrated very low levels of sickness absence and this allowed a further 1132 to be added to the support expenses budget.
36
37
Sometimes it makes sense for the person to operate a mix of these approaches, and then this too is detailed in the persons Working Policy.
38
Partners for Inclusion is subject to the same inspection and reporting cycles as any other support provider which contracts with a local authority and is registered with the Care Commission. The Care Commission inspections of Partners for Inclusions services have resulted in grades of 5 (very good) or 6 (excellent). In other words, it is recognised as a quality service provider even though its approaches may challenge older models of support for people with complex needs. What regulators or contract compliance units cannot do though, is hold the organisation - through its Board and staff - to account for how well Partners for Inclusion is doing in achieving its core purpose and goals, and where it can learn to do better.
Are people living the life they want - with home, friends, relationships, job, making a meaningful community contribution? Are they supported to do this safely in ways that protects their rights, health and wellbeing? Do we have highly committed and skilled staff doing this job? Are we fostering and spreading leadership - in our staff, and in the people we support? Are we in right relationship with the people we support? How effectively are we transferring power to the people we support? How resilient and full are the lives of the people we support, when we are not there?
39
We have learned that some processes are useful and support us in exercising good judgement, where before we might have rejected this idea. If there was a staff vacancy, we might have found an ideal match in the uncle of one of the persons other support workers. Because there was already a link, there was much less formality about, for example, obtaining references from the right sources. This was poor judgement - and it took a combination of an incident and a question from a family member to make us think about this in the round; and decide that a more structured process for employing people was needed to keep people safe.
Doreen Kelly, Partners for Inclusion
An operating system designed to support citizenship and control has to give as strong, or stronger, weight to these questions as it does to the questions asked by external stakeholders and regulators. Partners for Inclusion staff still maintain a heightened awareness of the risk that systems and processes and regulatory requirements get in the way of people having real lives. They commissioned an independent consultant to put this under the microscope - asking support workers what they do on a daily basis, asking people about their lives. The findings were positive, that systems and paperwork do not, at the moment, get in the way of the real work. This external review will become a regular check that the balance does not, inadvertently, lead to the organisations needs taking priority over the needs of people.
Support
Policy
Design
Accountability
Funding
40
6.2 Governance
Partners for Inclusion started its corporate life with a very small Board of 3 people who were closely involved in its development and understood in some detail the needs of the people supported. This has recently grown to 7 people, bringing different perspectives and knowledge to the task of strengthening its effectiveness and sustaining what it does well. Two of these are family members of people supported by Partners for Inclusion. Where the Executive Director is also the founder of an organisation - particularly one with a passionate social mission - the role of Board members may be diminished, with consequent weaknesses in governance. The size and make up of Partners for Inclusions Board means it has built in potential for a conflict of interest in 2 of its 6 members. The Board and Director are acknowledging the need to think about further development of the respective roles of Board members and senior staff in maintaining, sustaining and developing its shape and activities to support people to be in control, to be citizens.
41
7. Creative Community
An organisation is much more than systems, structures and processes. At its heart is a real community of people, with values and relationships. It is a shared place where humans come together to make sense of the world around them and to achieve things they all value.
7.1 Leadership
Partners for Inclusions initial development was built on Doreen Kellys leadership and that of her early staff team: their personal drive, credibility, values, integrity, ability to build strategic and personal relationships and, crucially, resilience in the face of difficulties. That it has survived is, at least in part, due to the way leadership has been developed and shared among the senior team; and the deliberate efforts to foster leadership in every member of staff. Now Partners for Inclusion is past the start-up phase, the tasks of maintenance, improvement and staying true to its values are as important as those of development, growth and innovation and the style of its leadership needs to reflect this. The focus of leadership effort is attending to and nurturing the culture of the organisation. This means having enough systems and resources in place to allow everyday management of the organisation to happen without dominating the senior teams agenda and crowding out time to think.
7.2 Beliefs
As we explored above, the leadership of Partners for Inclusion arose out of a wider community, who shared a common commitment to achieving citizenship for all. Their powerful beliefs included:
1. Everyone belongs - no one has needs so complex that they cannot be supported to live a good life, with their own home, friends and relationships and support in the community. 2. Everyone is different - his or her individual gifts, strengths, challenges and needs are valued. 3. Behaviours are how people communicate their intentions, beliefs, wishes, emotions, fears - they are not symptoms to be managed or cured.
42
7. Creative Community
These deep beliefs then also lead to more detailed beliefs about how a successful organisation, committed to citizenship and Personalised Support should operate:
We are not in charge - we are there to support the person to live a good life, to help them make choices. We dont have all the answers - we learn from the people we support, and the others around them. There is a better way - we just havent found it yet. It takes time to get to know someone and to support him or her well. Every policy or process has to support the person well. The money is there to work for the person, not to accumulate in the organisation. Support is a relationship, not a number of hours. We take a positive view - about people we support, their families, the communities in which we work, and the other agencies we work with. Think person first, organisation second.
Its not that Partners for Inclusion is against being organised. They know that good policies, procedures and backup are essential for them to support people well. They just insist on checking everything back to the people they support. Although Partners for Inclusion is the legal employer, each staff members primary engagement and loyalty is to the person that they support on a day to day basis - Daves the boss or I work for Harriet. This psychological contract is very important. The formal contract means that people cant sack their support staff, or increase their pay - but support staff talk and behave as if they could. And if the person is not happy with their support this will be dealt with by the organisation.
Understanding
Beliefs
Creativity
Trust
Leadership
Figure 7 Creative Community for Personalised Support
43
Our experience in other organisations has been that process and organisation has got in the way of providing truly personalised services; and we reacted against this with a fear of systems and processes that would inevitably de-individualise the support we offer. But this leads to chaos. You do need organisation and systems and processes, and not just because of regulation and compliance - but they need to be carefully and thoughtfully worked out so that they serve the individual and the organisation; or, that if they only serve the organisation and have a negative impact on the individual, then they are not introduced or maintained. This is one of the hardest balances to strike, and it is a critical element in the culture we have tried to create and want to protect. Everything that we do needs to be, and is, challenged and evaluated on a regular basis yet not lead to a culture where there is so much navel gazing that nothing actually gets done.
June Jeffrey, Depute Director
Support staff usually work alone with the person they support, meeting up from time to time with the others in the team, but less often with support staff who work for other people. There are good arguments for bringing people together more, to share experiences, tell stories and learn from other teams. And there are times when some people supported by Partners for Inclusion like to get together socially. But theres a fear of getting organisation-bound of people seeing themselves as working for the organisation more than for a particular person, and of looking for solutions within the organisation rather than outside. Part of the value of having an organisation is to build up a body of experience and knowledge. It makes sense to look at what is happening in one persons staff team where, for example compared with others, staff stay for a long time and dont get sick. However it needs to find a way of doing this that respects and maintains the individuality of each service. So the organisation is at pains to emphasise that, in practice, people work for a person first, and organisation second. They use opportunities to do this, such as printing budgets and payslips with the persons name at their head, alongside or before the company name. At the same time, the organisation recognises the need to support staff in what can at times be very demanding work - and acknowledge that while a staff person may be primarily working for one person she is also a part of a responsible organisation. This is therefore a work in progress; with the organisation trying to get the best fit between staff members need for work-life balance and security of income, and the persons need for a flexible and responsive support service. In its early days, with a very small staff group, there was no need to state or write down organisational values and assumptions, or what this meant for practice. It was the tacit understanding of a small team, without the need for explanation or argument.
44
7. Creative Community
Now, supporting 45 people and with some 220 staff, the assumptions are not as easily transmitted or maintained by osmosis. Modelling by senior staff is still an important element, but some incidents reveal misunderstanding or misinterpretation. New staff may see the individual autonomy, superficial informality, the commitment to flexibility and responsiveness and spontaneity, and believe that the culture is anything goes. Over time the leadership team recognised that they needed to build a stronger coherence between what we say we do, what we believe, how we behave and outcomes for the people we support. Some of the ways they are trying to do this include:
Carefully planned and mandatory induction training for all new staff - which introduces and explains the organisations values and beliefs - which has to be completed before any member of staff starts working to support the person. Starting to describe the behaviours that mean people are working in a way that is coherent with organisational values and beliefs. Adopting and promoting a leadership style with self-direction and coaching as central elements. Increasing the ways of engaging and communicating with staff to promote the shared understanding of these assumptions and stronger identification with the purpose of the organisation. For example, each team now has committed team reflection and development time built into the planning cycle around each person.
7.3 Trust
Partners for Inclusion works at getting relationships right and keeping them right. The people they support are at risk of exclusion - of having few or no relationships with people who are not paid to spend time with them. Good relationships mean increased trust, and it is trust that enables the creativity, flexibility and autonomy which is essential to Personalised Support. The relationships between people, their families and their community; between staff and the people they support; between support staff and senior staff; between the organisation and the wider world - all of these influence each other. So at the heart of Partners for Inclusions work are questions like:
Who is important in my life? How have people dealt with me in the past? Who am I to you? What can we expect of each other? Whos in charge?
People consciously and unconsciously bring their past histories to relationships and may look for familiar patterns which dont fit well with what Partners for Inclusion is trying to do. Partners for Inclusion works hard to resist the pressure to fall back into old and damaging habits and part of the senior staff s role is to coach people through this.
45
For example, a new staff member may bring experience of a previous organisation and assume that she has to get permission or approval for everything. Her team leader can easily respond with an old pattern from her previous organisation by providing not only permissions and approvals but also prohibitions and disapprovals. This culture has a powerful effect on the person being supported, since if support staff have no or limited power to think for themselves, how can they help the person take increased responsibility? Equally, the people whom Partners for Inclusion support may bring a history of being told what to do and may need time to adjust to a relationship of mutual respect and give and take. From the recruitment process through staff induction to ongoing training and development, staff are given the clear message that they are not a care worker, they are a facilitator of people having a real life, with choices, relationships and employment. Supporting staff to take up this role means that senior staff must work as facilitators. Most staff are more familiar with management than leadership, and when problems arise the temptation is to revert to telling people what to do or assuming the responsibility for doing it. This approach is not consistent with a culture of retaining responsibility as near to the person as possible. Instead it reinforces a parent-child dynamic - the opposite of the relationship being promoted for people supported. The coaching model doesnt come naturally to everyone, perhaps especially to the dynamic doers who initiated the organisation. The leadership teams have recognised this and have sought external support to help them learn new routines. For most of us, it is our friends and family who make life good and keep us safe. But many of the people that Partners for Inclusion supports have been isolated for many years - because they were in hospital, residential school or a care home. Creating new connections with someone at risk of exclusion is difficult, and takes years, not weeks. The starting point is often with and through paid staff. Sometimes a friendship will develop between a person and their staff person; or will grow from introductions made by staff. Many close acquaintances dont grow into lasting friendships, and may not survive the staff members move to another job or another area - but may still be a positive and memorable part of both peoples lives. Partners for Inclusion assumes that people have a right to choose their own friends, so does not try to prevent or discourage people spending time with staff or their friends outside work. However challenges from commissioners, contract or care managers have prompted the organisation to think very carefully about its legal and moral responsibilities to the people it supports and its staff. It has developed a written policy to help staff navigate the boundaries between their professional role and personal life with regard for the vulnerability of the people they support, while respecting peoples right to choose their own friends on the same basis as any other citizen. Partners for Inclusion is also clear that relationships with staff and family are not enough, and should be a bridge rather than a barrier to other relationships. Working out how to build and support these bridges, in ways that then lets staff step back, is one of their biggest current challenges. Partners for Inclusion doesnt see families as a threat, or the enemy, or competition. They dont want to own the person, and they dont feel the need to criticise or fix other peoples families.
46
7. Creative Community
7.4 Understanding
The team at Partners for Inclusion think and talk a lot. But most of this thinking and talking is focused on the people they support. They are still passionately interested in their craft, and this - rather than organisational politics or processes - commands their attention. They tell stories, and over time these get overlaid and interwoven to create a history - so they can take a long view about a person or a situation. They dont disrespect people in the way they talk about them - and they dont let other people get away with doing this, and this helps their talk stay positive. Part of the benefit of the organisation staying small is that senior staff know all the people they support. This oral history is supplemented with a culture of written stories, DVDs and photograph albums so that peoples stories get repeated and remembered and then added to. Partners for Inclusion is always ready to try another way and Partners for Inclusion does a good job. But it does not have a magic wand to stop bad things happening. There have been instances of abuse by staff, instances of staff being drunk at work, instances of stealing. The people whom Partners for Inclusion supports have hurt themselves, their staff or property. There have been neighbour disputes, and much more. However the dominant mind-set in the organisation when things are not going well is: We learn from our failures, we can do better, there is a better way, we just havent found it yet. We listen, change, keep trying till we get it right - it doesnt come easily, we might have to work really hard to find it and it can be a slow and painful process. When things are not working, despite an Individual Service Design being in place, despite Working Policies having been written, then the temptation is to revert to old familiar ways of doing things and unfortunately this can trigger exactly the same responses which have been unhelpful for the person in the past. When John is upset and things are going wrong, he may set something on fire. To keep him safe, his home is fitted with a sprinkler system. When he set his living room curtains on fire, all the furniture and carpeting was soaked and the house was very unpleasant to be in. He was very distressed and taken to hospital by the fire brigade. The incident was reported to Johns care manager, who wanted him to be re-housed temporarily, and possibly permanently, in highly supervised accommodation. This is what has happened before - the end of his previous time living in his own home, and after the last fire in his current home. But his team thought this keeps happening and we keep responding the same way, but it isnt working - what is that telling us? John loves his home, he is quite house proud and was very distressed after the fire about what he had done - so we decided that the Working Policy needed to be changed. A multi-agency team worked out Johns support plan. This team included psychiatry, psychology, nursing, social work and staff from Partners for Inclusion. The plan was worked out based on Johns past and learning from what worked and what didnt in order to develop a plan for the future. Johns incidents of fire raising, past and present, are a feature of who he is and how he deals with his own stress. The plan needed to take this into account and put support and systems in place that keep John safe whilst he is coping in this way. This meant that the Fire Service, Police and Accident and Emergency staff needed to be involved in working out and agreeing the Working Policy as at these times their reaction is important. Working this plan out in advance, and getting people signed up to it, is done to avoid panic, confusion or over reaction when John starts to display this type of behaviour. Following any incident of fire raising or other behaviour used by John to cope, a de-brief is held firstly with Johns immediate staff team who are employed by Partners for Inclusion and then with his
47
extended team, including the professionals involved with him. The aim of this is to look at what happened, get the full picture, and give all involved time to reflect on what, if anything, went wrong in putting the plan into action and how to avoid errors in future. The session is also used to try to work out what might have been happening for John, causing him to behave in this way. So the response to get John another house temporarily or permanently was considered on hindsight to be an over-reaction. It fed into the drama rather than working towards calming it all down and getting back to business as usual for John. Unfortunately John is someone for whom when things are going well he panics and goes into self-destruct mode. It is the job of Partners for Inclusion and others involved to deal with this in a helpful manner, not cause more problems. This is easier said than done whilst in the midst of these difficult times, hence the necessity for time out for staff for reflection. The new Working Policy, agreed by all agencies, is that John should stay in the house (providing some rooms are dry), and be supported through the process of drying out the other rooms. When something is not working, people are willing to go back to some fundamental questions:
Who is this a problem for? Is this part of a longer story? Whats making sense and whats not making sense from the persons point of view? What could the persons behaviour be telling us?
The people at Partners for Inclusion are optimists. They look for the good in people and they have high expectations. They dont underestimate the ability of ordinary people in the community to accommodate difference. They start from the assumption that people have good motives and are doing the best they can from where they are. They assume that everyone can learn, and that in every situation there is an opportunity to learn. They also know that they are in the situation, not floating above it, and so often they are part of the problem. Partners for Inclusions staff and Board members regularly take time out in retreats giving them thinking time to reflect on what they do and how they do it, challenge themselves and review what is happening for individual people and how the organisation and its services can be developed. They also value and seek out external observation and evaluation of what they do and how they do it. As part of its Altrum membership, Partners for Inclusion commits to a 3 yearly external evaluation and learning process using the evaluation tool Person-centredness in Five Dimensions, designed for service organisations and groups that are working for inclusion (see www.diversity-matters.org.uk) It also recently asked a Glasgow University researcher, working through the Scottish Consortium for Learning Disability, to evaluate its effectiveness in terms of its values and purpose. This self-critical examination of organisation and effectiveness is a conscious antidote to the dangers of complacency.
48
7. Creative Community
7.5 Creativity
Inclusion happens when patterns get rearranged and new connections made. For this to happen, staff have to see new possibilities and do the work to bring them to life. Most of us are hesitant to describe ourselves as creative, and see that as the domain of artists and scientists. Partners for Inclusion uses the word freely and actively nurtures creativity. How does creativity get renewed? What stops people becoming complacent and the organisation stagnant? Many aspects of the organisation contribute:
The way money is managed means there is built in flexibility to take a different path if this makes more sense for the person, and built in challenge about how the money is being spent. Conscious efforts are made to involve a diverse group of people in individual planning days - the more diverse the group of people, the more likely that new ideas will emerge. When things go wrong, the culture is to learn from this, to work out another way not to blame: so staff are liberated to experiment. There is purposeful facilitation and coaching to help staff and the people supported to think beyond their own experience and expectations. Personal development is weaved into individual support plans. Time for staff training and development is included in Individual Service Funds. As members of Altrum, Partners for Inclusion supported the development of the award winning HEC (Higher Education Certificate) in Person Centred Approaches to social care, delivered by the Thistle Foundation (see www.personcentred-learning.org.uk).
A critical part to creativity is having the time and space to think - both in structured and unstructured ways, and with different groups of people. It is especially important for staff who may often be working alone. Every persons staff team schedules team time in addition to individual supervision, to develop their thinking about how to support the person, particularly if, as happens, people get stuck in old patterns. As with most other aspects of the work of Partners for Inclusion, there is no magic formula but they do look at what they do and how they do it: why if we think we are creative are we trying to communicate with our staff by memo? and they consciously adopt different approaches, for example, using a creative writing session to review their strategic plan. One of the most striking things about the Partners for Inclusions culture is its approach to money. The organisation is money-conscious - it knows what things cost, it is canny about having enough in reserve for emergencies. But it is not motivated by money: it is not trying to make money or keep money. It may be that, because Partners for Inclusion is quite small it has not developed a large infrastructure which then develops its own distinct needs. This helps people at the centre of its attention. Money gets moved to where it can do useful work Partners for Inclusion uses money to do stuff.
49
50
Organisational Development
Organisational Development
Personalised Support was developed by a family of closely connected medium-sized organisations like Partners for Inclusion. However there may be other ways in which suitable organisations can be developed. We can also draw some more general lessons from its development.
Leadership first
Without a doubt innovation will only come where there are at least some people who are dissatisfied with what else is on offer and are willing to work for something better. This desire for Personalised Support might come from within an existing service provider, from a commissioner, or from people who need support and their families. However, any new initiative needs to be led from very early on by a person or small team who are willing to commit their time, energy and purpose to it. Unless a leader emerges to claim ownership, then no amount of official encouragement will make it happen. However, commissioners can do more than wait for the right person to turn up. First, they can create some elbow room for the new agency - who are the people this agency could best support? Commissioners might start by looking at whats being spent sending a handful of people away to residential facilities outside the area, or talking to families whose young people are getting to the point of needing to leave home. Or maybe a crisis - such as a poor inspection report or a financial problem - could lead a commissioner to recommend breaking up a large providing agency into smaller units.
Organisational size
Partners for Inclusion supports 45 people with complex needs, each with their own home, supported by their own staff that tend to live nearby. The organisation has a total staff of around 220 people and a self-imposed limit of offering services to around 45 people. Partners sees its small size as an important element in staying connected with the people supported and the distinct communities in which they live. They also see this human scale as a core component in helping to:
Maintain and manage productive relationships. Sustain a strong, shared vision and culture. Hold and protect organisational memory and knowledge. Focus on the people it supports and keep corporate structures, policies and procedures in the background.
53
Operate efficiently - small enough to support co-operation and efficient internal communication, big enough to support co-operative and cost effective purchasing from dedicated back office services. Keep accountability lines short.
However smaller organisations can find that limited size brings a cost of limited scope and thinking, restricting its ability to respond to new opportunities. One way that Partners for Inclusion tries to counter this is through participation in the federation of organisations and individuals called Altrum (www.altrum.org.uk), which works together to promote inclusion and citizenship in ways that might be difficult for any one of its members to do alone. This may also suggest a solution for larger organisations who want to provide Personalised Support. It may be helpful to think about federal structures which give more power and authority to local leaders. It may also be important to think about how those leaders will be recruited so that they have an incentive to stay with and focused upon the needs of their local organisation. Personnel structures that only enable vertical career improvement may struggle to attract the right kind of leaders to support Personalised Support.
Organisational support
In principle even the needs to support one person can be the seed that can start a new organisation or new service. This was how Partners for Inclusion began, by serving one person in North Ayrshire. This was possible because for the first years of its life Partners for Inclusion was based within another organisation - Inclusion Glasgow. Inclusion Glasgow was able to act as the incubator for Partners for Inclusion and this gave Doreen Kelly the safety and security to begin the development of an organisation which, in due course, was able to become an independent organisation in its own right. This enabled Partners for Inclusion to develop at a slower pace, to develop one person at a time, designing individual services and recruiting the staff around each new person it was asked to support. The organisations start up overheads were therefore very low and it benefited from shared services, experience and mentoring support until the number of people being supported brought an income level which could sustain an independent operation. Staff transferred to the new organisation under TUPE rules and it had the choice of continuing to purchase central services such as HR, training and finance on the shared services model, or look at the cost and benefits of providing these in-house. The clarity of individual funding also enabled negotiation of individual service start up costs to be met in full by the commissioning agency. It is very hard to build a business one person at a time, given that typical commissioning systems tend to favour established organisations and block contracting. But its clearly better for an organisation to grow gradually than to start off with 30 or 40 people. However, until the organisation grows to that size, it may be unable to generate enough income to pay for its own management and central services. So it may either need deficit funding to provide these services itself, or money to buy in these services from one or more trusted third parties. Commissioners should expect to work with the new organisation operating a deficit budget for three to five years. Although Inclusion Glasgow and Partners for Inclusion were each able to be self-financing in under two years.
54
Organisational Development
Commissioners and other divisions in local authorities and elsewhere can encourage leadership in this field by seeking out applicants for social enterprise funding, looking at financial instruments for investing in growing new organisations and backing entrepreneurs business plans with small grants that enable people to go and learn from the small number of organisations that are providing local services for people with complex needs.
55
Future Challenges
Partners for Inclusion is still changing and developing. It does not always manage to achieve all it hopes but it and has learned over time that some matters require more focus or attention.
The world it is operating in is also changing and there are big questions in Scotland about the future shape of support and funding for disabled people. In particular more focus needs to be paid to:
Help people, with family, friends or representatives, to take more control over their budget and their support. Help people get paid work. Help people make more friends in the wider community. Help people explore how to use their Individual Service Fund more creatively.
Increasing control
While Partners for Inclusion works hard to listen to the views and wishes of the people it supports, in practice the relationship is often too one-sided. Where the person does not have some sort of circle of support or an independent advisor or advocate, the idea of a reciprocal contract is hard to realise. In the future it will be important to improve and make clear the individual contract between the service provider and the person seeking support, to reflect the cost of the service, and to be transparent about the power balance, in terms of rights and responsibilities, between the parties.
Employment
Partners for Inclusion employs an Employment Development Co-ordinator to increase the organisations capacity to make connections, which could provide or lead to work for individuals. Supporting people with work is now included in the core job description for support workers. Every new member of staff has training on employment for the people they support part of embedding the cultural assumption that everyone can and should contribute. Staff are supported to think differently about what a job is and about the different skills and approach needed when the person gets a job and the workers role changes from support worker to job coach. The Employment Development Co-ordinator coaches staff teams to think about what the person enjoys doing, how a job can be carved out of a larger task. The coaching may need to focus on changing the way that the staff team sees the person, and about how they see work, so they can imagine and then find or create the right niche for that persons gifts and interests.
56
Future Challenges
Staff are supported to seek the opportunities and We have been socialised relationships that will work for the person, which may be different from those they would seek for themselves. into expecting that we Part of the Employment Development Co-ordinators should get a job, the people job can sometimes be working alongside the persons we support havent. No-one support worker, modelling how to build relationships with ever said to them what do prospective employers. George used to go to the newsagent every day with his you want to be when you support worker, Mary, to buy chocolate and a newspaper. grow up? They knew the names of the people who worked there. Mary was encouraged to ask Lorna, who worked behind the Doreen Kelly, Partners for Inclusion counter to do her a favour the next time George came into the shop, would she ask him to put some packets of crisps on the shelf. Over the next 6 months, the number of tasks grew and George is now working half a day a week in return for an exchange of goods from the shop (as cash is not meaningful to him). This is a first step in being employed that can be developed slowly at Georges pace. Partners for Inclusion has also paid attention to making relationships with community organisations and businesses. They, along with others in the area, created a local Business Diversity Employment Award, which raises awareness and gives recognition to local employers, adding to a climate where employers are receptive. The organisation is a member of the Ayrshire Supported Employment Network, developing relationships with job centres, and building links with local employers. This is slow and persistent work, but it is crucial to developing relationships with the local business community.
New connections
Partners for Inclusion is also now focusing on helping support teams and individual staff to think more creatively about how to help the person they support to make new relationships and stronger and more durable community connections. They are learning how to facilitate circles of support and looking at ways of making this independent from their role as a support provider. They are also exploring the benefits of community circles. Partners for Inclusion now aims to have more local community members on their boards of management or as advisors on particular issues. There could be more contribution back to the local community, whether giving a prize for the school fete or a talk to the sixth form. The organisations staff could be encouraged to become more connected themselves - singing in the choir or joining the campaign to save the swimming pool. Partners for Inclusion has recently begun to grow a new organisation - Just Connections - as a separate project which will then be able to become independent. A large part of its focus is on younger people with a base in the communities it works in, and developing its work into schools and colleges. It benefits from Partners for Inclusions track record, back office services, and development support. It needs, and receives, intervention to protect it as well as to nourish it in its initial stages.
57
Increasing creativity
As individuals take more control the support providers may see their role shifting towards that of facilitator - helping people to spend their Individual Service Fund more creatively on more appropriate supports. This is already an inherent feature of Personalised Support, but it is at times too easy to provide support that is in-house or more familiar. In future the service provider may see their role as being more focused upon:
Helping people develop friends and relationships Finding a new home Recruiting managing and training staff Managing money and individual budgets Finding employment Accessing educational opportunities Getting connected to the community
58
Conclusion
Conclusion
We began by considering the underrated value of ordinariness. Some people, like Alison, achieve it because they can get the right support from their family, the community and the state. So many others, as Professor Mansell states, are excluded from ordinariness because we do not seem to understand how to provide the kind of Personalised Support which makes ordinary citizenship a reality. This report from Julia Fitzpatrick is important because it provides one of the few detailed accounts of how to make ordinary happen for people with the most complex and challenging needs. This report is also published at a critical time for services in Scotland and England. Scotland has led the way in developing Personalised Support. The early work of Inclusion Glasgow, Partners for Inclusion and the other members of Altrum has blazed a trail - demonstrating that a whole new level of individualisation and personalisation is possible for the very groups that are most often excluded from citizenship. The very ideas of Individual Budgets and Self-Directed Support, which have recently dominated social policy in England, were actually developed and tested first in Scotland. However policy leaders in Scotland are still reticent about promoting more radical forms of personalisation. On the other hand in England, where the political support for personalisation has been extremely strong, the actual delivery by service providers has been very patchy. Too often service providers are still treated with mistrust by local authorities. They do not feel that they have a place within the new system and many are resisting change. There seems to be an enormous missed opportunity here. In Scotland we should be able to recognise and build on what has already been achieved - Scotland could be leading the way in personalisation. England could also learn from these earlier experiences and begin the process of transforming the service provider sector and encouraging the development of genuine Personalised Support. The greatest opportunity offered by Personalised Support is a system for offering people flexibility, control and greater citizenship - without unnecessary complexity. Personalised Support means that people do not need to become employers in order to get the kind of support that people want. People do not even need to directly manage their own individual budgets. The service provider is paid to specialise in these functions and this makes personalisation much less burdensome. In addition Personalised Support will enable those who have been most excluded, the most challenging, the most complex, who are still perhaps languishing in inappropriate services, perhaps many miles away, to come back home. This could lead to enormous improvements in quality - but it will also mean the repatriation of millions of pounds that is currently wasted in spending outside the local community. Finally Personalised Support offers an opportunity for increased efficiency - without abandoning quality. In difficult economic times it will only be by increased attention to helping people make the best of their own real wealth that we will avoid returning to damaging and institutional solutions. Simon Duffy Director of The Centre for Welfare Reform
59
Useful Resources
Writings
Department of Health (2007) Services for people with learning disabilities and challenging behaviour or mental health needs. (Mansell Report) Covey, S. R. (2004) 7 Habits of Highly Effective People. New York, Simon & Schuster. Duffy, S. (2003) Keys to Citizenship. Birkenhead, Paradigm. Duffy, S. (2010a) Individual Service Design. Sheffield, The Centre for Welfare Reform. Duffy, S. (2010b) Personalisation in Mental Health. Sheffield, The Centre for Welfare Reform. Etmanksi, A. (2004) A Good Life. Vancouver, PLAN. Falvey, M. Forest, M. Pearpoint, J. Rosenberg, J. L. (1997) All My Lifes A Circle - using the tools: circles, MAPS & PATHS. Toronto, Inclusion Press. Mount, B. (1987) Person-Centred Planning. New York, Graphic Futures. Pearpoint, J. OBrien, J. Forest, M. (1993) PATH: Planning Possible Positive Futures. Toronto, Inclusion Press. Scott, P. Kowalchuk, P. Hasbury, D. (2006) You and Your Budget: A guide to understanding and managing your funds. Highland Park NJ, Neighbours Inc. Smull M. W. Harrison, S. (1992) Supporting People with Severe Reputations in the Community. Alexandria VA, National Association of State Mental Retardation Programme Directors. Vidyarthi, V. & Wilson, P. A. (2008) Development from Within. Herndon VA, Apex Foundation.
Websites
www.inclusion.com www.neighbours-inc.com www.centreforwelfarereform.org www.equalfutures.org.uk www.scie.org.uk www.plan.ca www.altrum.org.uk www.partnersforinclusion.org www.diversity-matters.org.uk
Acknowledgements
Our thanks to Julia Fitzpatrick who authored this report and special thanks to Pete Ritchie for all his support. Thanks also to Julie Barclay for her early design work. We would also like to thank all the staff, families and people at Partners for Inclusion for the time and effort they put into sharing their stories and perspectives. We would especially like to thank Paul Davies from the Department of Health for making this report possible and encouraging all those involved to share what they had learned.
60
Useful Resources
Altrum
Altrum is an organisation of organisations and individual people committed to fostering creativity, community and citizenship for all. Its members include Partners for Inclusion, Inclusion Glasgow and many other pioneering providers of Personalised Support. For more information about altrum go to www.altrum.org.uk
61
62
To find out more about this publication contact Partners for Inclusion West Kirk, 84 Portland Street, Kilmarnock, KA3 1AA Telephone: 01563 825 555 Email: [email protected] website: www.partnersforinclusion.org published by The Centre for Welfare Reform www.centreforwelfarereform.org
design: henry iles & associates / [email protected]