Integration is a timely line on the horizon since disabled people in Scotland are facing the worst ever crisis due to a perfect storm of cuts to services, reduced access to justice, welfare reform and increasing hate crime. This is on top of the usual disadvantage and discrimination they face which includes lack of equal access to education, learning, participation, transport, services, accessible information, housing and employability support amongst other things.
Specifically, disabled people experience many barriers accessing health and social work services, ranging from lack of accessible information and communication to draconian charges for community care services, stricter eligibility criteria for services and lack of advocacy amongst other things.
And then there are physical barriers including buildings, transport and organisational systems that prevent equal access for all such as the refusal of hospitals to let some disabled people keep their wheelchair beside them.
“I was completely immobile and dependent for the duration of my stay. Then they made me feel like a nuisance for asking for assistance and I was told to just wet the bed and they’d change it later, even though I’m not incontinent” – one Glasgow Disability Alliance (GDA) member
Many disabled people have also reported concerns to us about social care provision over the years.
“Inflexible, unreliable, restrictive – on the odd occasions I do manage to get out socially, I’ve got to rush home or I miss my evening meal and support to get to bed” – another GDA member
Greater access to and flexibility of Self Directed Support for flexible, support services, lifting of age barriers in services, e.g., the transition from adult to older people’s services, and a lack of joined up working have been frequently mentioned, with people giving specific examples of being ‘stuck’ in hospital because social care packages were delayed. People also report experience of multiple assessments from different agencies, where one holistic assessment should be sufficient. All of this supports the need for Integration.
Encarta UK Dictionary defines Integration as ‘equal access for all’ and if this is to be the outcome of health and social care integration for Scotland’s million disabled people, and 2m people with long term conditions, then it’s a welcome one!
Indeed, Glasgow Disability Alliance’s disabled members welcome the principles behind integration which seek to place the service user at the heart of services, taking account of particular needs of the person including their participation in community life. This chimes with GDA’s own vision of wanting disabled people to participate fully in their own lives, communities and wider society, with the support they need and with choices equal to others.
The move towards greater rights and dignity is also refreshing as for many disabled people choice and control over their life and being treated with dignity are not inevitable. Disabled people are frequently voiceless and powerless in decisions about their lives and lack the most basic choices about when they get up, how they wash or dress, what they get eat or to do or where they go on a daily basis and who they spend time with.
Self -determination, participation and – as importantly – the ability to make a contribution are not givens for disabled people. So we also welcome the opportunity for communities themselves – in this case disabled people- to plan and lead services, improving quality and increasing preventative approaches which make best use of our strengths, skills and assets.
Again, this fits well with GDA’s mission to act as the collective, representative voice of disabled people, promoting equality, rights and social justice. We know the pros of integration because our members have long championed better joined up services and have contributed their ideas about what needs to be done. Integration is bursting with positive potential.
Many ideas have emerged from GDA members during our involvement in Glasgow’s programme to reshape care for older people (RCOP). RCOP has been a forerunner to integration of broader health and social care services for adults and children.
Over the last few years, learning from disabled people as part of RCOP includes the need for greater choice and control over what services are provided; being involved in service planning and design to ensure both better targeting of resources and more effective interventions; services to be more joined up, person centred, holistic, flexible and responsive; improved accessible communication and information about what’s available; reduced waiting lists and local, self- referred access to low level preventative services such as eye tests, podiatry, physio and community based services and activities which improve wellbeing, connections and resilience.
The need for support for involvement is also well rehearsed. And of course, more cooperation between health and social work services is needed, particularly in relation to discharge from hospital and aids/adaptations to the home environment, including stair lifts, wet rooms, specialist furniture, etc.
Despite the call for reform, there are some questions hanging over the Scottish Government’s ambitious reform programme which seeks to improve services and offer seamless, joined up provision. For example, the fact that disabled people, older people and communities are assets in themselves and have strengths doesn’t reduce their need for support and capacity building for involvement in all of this. That’s where the role of DPOs- disabled people’s organisations and Community Led Organisations- come in as well as the third sector.
GDA is itself an example of a DPO: a membership-led organisation, with almost 2,500 individual disabled people, aged 16-96, as well as groups led by disabled people. We provide accessible learning, programmes, events, coaching and activities with and for disabled people to raise aspirations, build skills, confidence and connections, to have their voices heard, to make choices and have greater control, to increase capacity for independent living and ultimately, to have more fulfilling lives.
Increased participation, enhanced connections, improved wellbeing and strengthened resilience are amongst positive outcomes reported (by both internal and external evaluations). GDA also works extensively through partnership and policy development in Glasgow and Scotland to ensure that services better understand and meet the need of disabled citizens. This fits perfectly with integration which is about making services more responsive to the needs of the people of Scotland in order to improve health and wellbeing across the country. And of course, the voices of service users are paramount in all of this.
Disabled people- and communities everywhere – are up for using our voices and this has never been as vital and apparent as in this post-referendum period where Scotland’s people have come alive with renewed energy for having a say in decisions which affect them. People value being involved and being listened to, and enablers are required to facilitate disabled people and other communities to play their full part in the process. So it will be critical to direct resources to communities themselves rather than to larger organisations which are far removed from grassroots.
The threat to integration is not that disabled people or wider communities won’t take part or take their responsible roles: more worryingly, the real threat is that we might never get the chance. Learning from RCOP in Glasgow suggests resources can be put to excellent use to develop community led services and supports.
Building in evaluation from the outset is essential. So too is having honest discussions about the potential for disinvestment in a system where demand continues to increase whilst public funds are cut and budgets must be balanced. This has clear implications for the capacity to invest in prevention and early intervention – the very services which are being called for by disabled people cannot be afforded in real terms if services continue in their current form.
But diminishing resources, lack of capacity for disinvestment, fast paced work programmes and lack of time for proper involvement often lead to frustrations in partnership conversations about what is truly possible: it might be more honest to simply give the money to health and social work to help plug budget cuts than to set an agenda for transformational change that is not achievable.
Another very real challenge with reform and change programmes is the perennial focus on structures and processes. Often, the people who actually use the services can become lost in all of this whilst officers set about the compliance related tasks to set up systems.
So, on reflection, there is a potential for a smoke and mirrors approach to reform with the risk that the end user of services might be the last consideration – not deliberately but perhaps through pressures of time and compliance. This is despite the integration principles and national outcomes which are strongly focused around human rights.
So what would bring about the successful outcome of integration if we really put our minds to it?
• A human rights based approach i.e. PANEL: Participation, Accountability, Non Discrimination, Empowerment and access to legal rights.
• Leadership buy in to the principles and outcomes.
• Co-production- health and social work working together and working differently with communities, the third and independent sectors based on equality, reciprocity, trust and mutual respect. This could include joint multi-agency training, co-location of services within communities. This must include the voices of disabled people and communities.
• Culture change is required at different levels: health has previously operated from a medical model whilst social work traditionally recognised the social barriers model to disability. Exploration and learning together will help with this. Workforce development, staff empowerment and some attention to process and relationships is needed. Giving up power in order to shift this to disabled people and wider communities is challenging for those who may have a vested interest in protecting services and jobs. A shared mission, vision and values statement might help.
• A clear and accessible communication strategy and plan for agencies and for the public
• Building in learning from RCOP (e.g., Glasgow’s cutting edge Third Sector Transformation Fund) could inform Joint Strategic Commissioning and ensure the input of service users and communities. Learning of ‘what works’ (e.g., the Glasgow pilots) could result in a commissioned customised menu of community, neighbourhood and appropriate city-wide specialists services e.g. carers support, community food, community transport, confidence building, social connections and voice related work. These would significantly impact on preventative work.
• Joining up not just services but structures (e.g., Community Planning, Glasgow’s Independent Living Strategy, Community Learning and Development)
• Capacity building and support for the involvement and voices of disabled people and wider communities in Scotland who are users of health and social care services.
Like many policy drivers, the success of health and social care integration will depend on all of these things and more. Belief and a commitment to make it work are the starting point and culture and behavioural changes are vital. This would separate integration from other change programmes where there are massive gaps between rhetoric and reality, between the good intentions of policy makers and the realistic challenges faced by those charged with delivering on the ground.
The recipe is set for a transformative shift which could make a difference to disabled people in Scotland and to all citizens. The trick will be to follow it and not to lose sight of the very people intended to benefit most. Integration has the potential to deliver equal access for all – even those who currently experience the worst inequalities and health and social outcomes in our communities – both geographical and thematic.
Tressa Burke is Chief Executive of Glasgow Disability Alliance and Chair of the Glasgow RCOP Capacity Building Workstream Group. She is also a disabled person herself