We talk about being person-centred in social care, but what does this mean in the context of supporting people with learning disabilities or autistic people to leave a long-stay hospital or assessment and treatment unit?
When we talk to leaders in adult social care they openly admit “we can do better for people” with regards to community support and getting a good life.
One national project, Small Supports, is providing some answers and raising some questions about how we support people and commission services differently.
Personalisation and being person-centred is at the heart of this project, with twelve sites nationally supporting the growth of small providers. Amanda (from the Team at Imagineer) is involved in developing the Lancashire and South Cumbria Small Supports project.
Small Supports are small, local organisations who work with people with learning disabilities and/or autism, who have experienced difficult or traumatic life events and who need a different approach to support them to leave hospital.
These new providers will focus on putting the person in the driving seat by building strong relationships with them and their family and circle of support. Fundamental to this is their willingness and ability to listen deeply to the person, their aspirations and hopes
for their future and then to help them choose and plan what a great life looks like for them. Conversations about support and risk follow that.
The belief is that remaining small enables the leaders of the organisation to keep in touch with everyone, the people being supported, their families and those providing the support. Small is also very much about quality. Building strong relationships of trust with the individuals they support and their families, the commissioners and the community teams is vital to ensuring quality continuous support. Being able to ‘touch the sides’ of the organisation means that when challenges arise and changes are needed they can be spotted early and acted upon quickly.
Being small and local also means the leaders and paid supporters in the organisation are rooted and engaged in their community. They are able to build links with the person to their community based on their assets and strengths.
People are therefore able to contribute to society and build relationships outside of their family and paid support, something Small Supports strongly advocates. Focusing on individual’s aspirations and building intentional relational networks with and for the
person means that anything becomes possible, including friendships, finding love, getting a job, being a good neighbour and regaining health and happiness. Whilst these things may not seem like a great ask for most people, for many people who have lived for years in locked environments these important life experiences may feel out of reach. Small Supports is aspiring to change this by putting the person at the centre of the decision making in their life including focusing on what a good life looks like for them.
This is where quality Support Brokerage fits in. Being able to use a personal budget in the form of a direct payment, third party health budget or individual service fund offers a way to use creative and strengths based approaches to build a support plan directed by the person and their family. Every person has unique strengths, assets, gifts and skills and these are the starting point for building a dynamic support plan with the person in the driving seat. Looking at the person’s aspirations first, instead of a ‘one size fits all’ approach to buying support services; a personal budget enables the person to be directing their plan and how they want to spend their money so that the support wraps around them. The provider is there to support the individual and broker services as directed by the person. This will look very different for each person. Support Brokerage enables this bespoke and highly creative approach to designing a support plan which makes sense to the person; and drawing on all of the other strengths, connections and resources available to the person which can help to make their plan a reality..
What Small Supports organisations learnt was that compromising on control and aspirations is when things start to go wrong. Using an individual service fund or a personal health budget enables the person to be in control, supported by their family and the provider. This type of personal budget offers flexibility like a direct payment.
Recognising that daily life is not on a schedule, is not predictable and is not the same every day. The person, their family and network supported by their provider can flex the support around the person’s choices and changing needs and if something unexpected comes up, they can adapt. This is not necessarily the case with a commissioned or managed budget (sometimes referred to as a ‘notional’ budget), where they might have to ask for a social care review to change the support plan, which may not happen immediately.
An individual service fund (ISF) is where the person and their family might like the idea of directing their support and being in control but don’t want the responsibility of managing the finances, staff and payroll. The provider or a third party helps them work out how to spend their budget and create their support plan and is accountable for it on their behalf; while the person remains in control of their support.
People who have successfully established their new Small Supports organisation tend to be people who have a background in providing or commissioning services.
Some are people with lived experience and family members, some are learning disability nurses, commissioners or social workers. However, they are bold and compassionate leaders committed to human rights, who understand the value of their community, aspire to provide high quality, local support and plan to remain small but sustainable- not supporting more than 5 people in their first year.
All Small Supports sites are actively looking for brave values-driven people who want to explore with them how to set up their own dynamic citizen-focused great Small Supports organisation. They will need to be tenacious, pro-active, flexible, good at problem-solving and passionate about making a difference and supporting people to live a great life.
The Lancashire and South Cumbria Small Supports team are looking for passionate people to help us do this. Get involved or find out more .
Find out more about joining the Small Supports programme and other Small Supports sites in England.
Amanda Topps is an Associate Consultant at Imagineer. You can read her full bio here.
The majority of commissioning for Adult Health and Social Care is still focused on fixed and outdated service models which are determined and designed by profit-making service providers; squeezing individual and often complex needs into a broken system which is no longer fit for purpose. The result is that people experiencing a complex range of challenges in their lives often fall into a cycle of crisis, knee-jerk commissioning responses, placement breakdown, trauma and further crisis. Is the person being supported in the system complex? Or does the current system propagate complexities?
These linear commissioning processes are still the norm. Yet we all know the world of Health and Social Care changes quickly. Let’s say goodbye to traditional commissioning processes and embrace a more flexible and individualised approach. It’s called Self Directed Support.
Traditional commissioning for Adult Social Care and Health started at a time when the world of Health and Social Care was more stable and financially predictable than today. It made sense to those holding the budgets to have a model which used universal needs analysis of geographic areas (‘misery maps’) as a starting point, and then went to the Provider market place to seek solutions for meeting those needs. Provider organisations jumped to attention. Commissioning budgets quickly got tied up in framework and block contract arrangements agreed via European tendering processes and costly procurement systems which were designated by service label, and need. Lots of ‘specialist’ provider services sprung up- ranging from small Learning Disability homes to private Mental Health ‘Assessment and Treatment’ facilities and blocks of flats for people with Dementia. Lots of little ‘Care Ghettos’ were created around the UK.
There was profit to be made. It attracted the Venture Capitalists. Their cost and volume discounts stifled the small locally-based, community provider organisations, charities and social good organisations (who existed to help people to live well, learn to self-advocate and uphold their rights, enjoy citizenship in their local communities and experience a good life). The Health and Social Care market became a place for the giant corporates. The individual receiving support was forgotten- buried under the swathes of corporate governance, regulation and cost efficiency measures.
Because of this system the very need for Self-Advocacy exists, and we see an ongoing advance of legal challenges such as Judicial Reviews for people within the system who are fighting for their rights.
But this model of commissioning and market-shaping is outdated and provides a perfect breeding ground for the deprivation and abuse of human rights of the very people it should be there to protect and serve. Ultimately, it is costly, damaging and just plain wrong.
Instead of a narrow linear path to services, support by hours and tasks; we argue for flexible budgets—based on genuine person-centred and strengths-based assessment. Rooted in the intrinsic motivation and aspirations of the person and reflecting the need for flexibility which comes with the very natural and human process of changing & evolving interests, changing needs and ageing; and we argue to support the development of community connections and cohesion. Effectively the same level of connection, choice, control and flexibility which other citizens are able to access and enjoy when they are not reliant on statutory funding and provision to lead a normal life.
We argue for a recognition that Support Plans which are designed primarily around the person’s strengths, passions and motivations; rather than need, deficits and risks are more likely to achieve outcomes long-term, keep the person safe and ultimately reduce their dependency on the public purse or the repeated cycles of crisis which result in the need for high-cost emergency interventions.
We argue for more flexibility and less standardisation. For more variety and opportunity to use budgets more flexibly in order to build good personalised support which is tailored to the individual, and fewer blue-printed service models from large provider organisations. (Who wants to live in a care ghetto??) We argue for people to hold and control their own budgets, with good support to manage them if needed. We argue for ordinary homes in ordinary neighbourhoods. Good support. More courage, kindness and respect for human rights. More value for people as citizens and fellow humans. More focus on the strength and opportunity of connected communities, neighbourhoods and localities as the starting place for finding solutions. We argue for local democracy and decision-making power for communities to develop and build what makes sense for them on a local level, rather than what is determined by decision-makers who live far away, hold the purse strings and don’t have any understanding or experience of what it is like to live in those communities.
We’re thinking of the brave ones out there who challenge the current system and embrace new ways of working and stewarding the public purse. We’re thinking about a world where everyone matters and everyone has a voice.
(Based on an image concept by @waitbutwhy)
It’s called Self Directed Support. It’s actually been around for years. It’s embedded within current Health and Social Care legislation. It’s a right in law (Care Act 2014) for people to have it. Self Directed Support is where the person entitled to receive support is given clear information about their options, and a choice to use the financial resource allocated for their support (by their Local Authority and/or CCG) in a flexible way which makes most sense for them. Effectively, the person can design their own support plan. So why is it not the obvious first option?
It’s because we are still stuck with the old traditional systems for commissioning and contracting for support. We have very expensive Local Authority & Health departments and systems which are inefficient and not fit for purpose. We spend a lot of time and money on trouble-shooting poor commissioning and support arrangements which have not met people’s needs and have triggered the cycle of crisis. We have a pool of social workers entrenched in a focus on crisis intervention and budget cuts. There is no room for proactive or preventative approaches. Everybody is fire-fighting.
Let’s stop trying to re-invent a buckled wheel, calling it by a different name and expecting it to change things. Let’s be radically different.
Where are the some of the good solutions happening already?
Self Directed Support makes absolute sense- it connects naturally to all of these Strengths-based approaches. Let’s learn how to make life work well for everyone.
For more information about Self Directed Support, visit our website: www.imagineer.org.uk
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Here, Leah shares some of her story about caring for her three sons under the age of 18 who are all diagnosed with Autism and a range of other needs.
I have 3 children all of which have Autism, some learning disabilities and possible genetic syndrome. The boys are twins (age 15) and my younger son (age 6). They’re all amazing and despite having the same diagnosis and being twins they present in very different ways and have different needs. All 3 need to be kept safe due to a lack of understanding regarding dangers. All 3 require support to meet daily care needs and this varies from prompts to full assistance. All 3 boys attend special schools, (two out of area). This makes me feel very lucky as it means that their provision has all the adaptations and adjustments required to support them successfully. I stated that this makes me feel lucky and I say that as I witness other parents and carers having a daily fight to secure such a placement. I myself had a long battle too originally, and although it almost cost me my mental health I’m so glad I persevered.
For the time the boys are not at school, then they need support and I’m caring for them physically and directly- be that: sorting medication, clothing, cooking, personal needs, dealing with emotional difficulties…. there’s also tasks and appointments during the school day that need to be dealt with such as preparing for changes to routine, dealing with care plans, EHC plans, genetics, orthotics, OT, SALT, surgery, continence nurse, short breaks and the list goes on. Having said this, again- I’m lucky as I have all this professional input and undoubtedly it takes up so much time; but I know the benefits are immense and some other carers are left to struggle without this level of input. It’s hard to put any actual timings on my caring activities but needless to say that I had to leave my career 6 years ago due to the level of need so that I could become a full time carer to the boys.
All 3 boys are in receipt of Short Breaks and this provides a personal assistant for 3 hours each per week (term time) and 6 hours during school holidays. We also have an amazing family support network that allows us some overnight respite. When not caring, I like to walk and read. I also like to increase my skill set with training and courses (usually SEND related) to better stock my armoury in preparation for the next battle! I also volunteer within community protects and support 2 local SEND charities.
Recognition that having multiple children with SEND increases need. Not having to battle and fight for everything which is constantly the case due to such a lack of funding (so you’re either fighting to get a service or fighting to keep it). Better SEND (Special Educational Needs and Disabilities) guidance that is not open to interpretation; a more inclusive society, and for person-centred approaches to be used across all services. My children’s needs are not the issue. They’re different, not broken but what is the actual issue is a general lack of acceptance and understanding. Being a carer for my disabled children has been so difficult at times, taking its toll on my own health and wellbeing. However, the one thing I’m sure of is that it’s made me a better version of myself and for that (and so much more) I’m extremely grateful.
The reality is hard, the worry for now and for the future can be all-consuming. The constant needs and demands can be draining but each day arrives with some joys (be that a milestone or just a positive day generally). It also arrives with the hope that today is the day that paves the way for true acceptance and inclusion.
Sometimes I feel completely exhausted and out of my depth. Sometimes I feel like I’ve completely lost myself. I feel selfish because I want to take a long bath, wash my hair, wear unpractical clothes, see friends, take a road trip, have a conversation of my choosing; but then sometimes this makes me feel more upset as its a glimpse into another world. I never resent my children and that’s the truth. As I said earlier, they’ve made me a better person; but sometimes I feel tired and overwhelmed especially after a long period of no sleep and when big transitions are approaching as then the worry of the future seems all-consuming. Sometimes I just need a crystal ball to show me how they’ll manage when I’m not around; or if I become ill; or if services are cut any further; or if some parts of society become even less tolerant and more ignorant. Performing any physical and practical needs can be tiring but trying to constantly plan and pre-empt for me is the part that really wears me out- my mind feels to be in constant overdrive.
At Imagineer, we work alongside unpaid family carers in many different ways; but one of the key ways that we can assist is by providing Support Brokerage.
If you are interested in receiving assistance from one of our Support Brokers, please contact us: firstname.lastname@example.org to request a call-back for an informal discussion, or a referral form.
For more information about Carers Week 2021, visit: Carersweek.org
Yesterday (16th Feb 2021), we had the privilege of attending and sharing about our work at ‘It’s our community’ online conference, hosted by Citizen Network.
We wanted to share a short summary of the event, and encourage you to visit the YouTube channel to watch the event if you haven’t already done so.
Here’s the timetable of speakers:
Click here to watch the full conference or any of the individual talks.
We heard from a diverse range of speakers all bringing their perspectives about citizenship, life in the community and how social care impacts their lives- both the good and the bad experiences. Many of the stories we heard were raw and painful. They illustrated the struggle so many individuals and families go through in order to get good support, and the vilification of those people in society who experience some of the greatest challenges.
We heard from professionals working within (and external to) the statutory systems which underpin our current social care system; and we heard some great examples of innovation, creative use of resources and stories of people and communities really being able to find their own solutions which could be cost-effective and enduring.
Liz shared how 12 years of delivering Support Brokerage to people and families had demonstrated that things could be done differently and really effectively- using resources creatively, flexibly and often at a much lower cost- by placing the resources and the control in the hands of the people and communities who needed them. The solutions to people’s needs often reside within the communities where they live. The current system is based very much on the medical model and the professional gift model- focusing on need, risk, deficit and diagnostic labels. The resources we need are already there, but need to be realigned and used in a way which makes sense to the people who need them. Our social care system is still struggling with the concept of relinquishing power and control into the hands of the people who use it. We need a radical reform of social care, where there is no charge for care to the citizen. Access to care and support should be a universal right. (2:10:50 into the conference, if you wish to listen specifically to Liz)
The summing up of the event was shared wonderfully and articulately by Simon Duffy (Centre for Welfare Reform) – commenting in response to Shadow Social Care Minister- Liz Kendall; that we need to think about what the basis of a long-term new vision for social care is. What we’ve seen for three decades is a drift- that the consensus building process has failed to bring about the changes we’ve been talking about for the last few hours (during the conference). This conference was framed as a progressive vision for social care. We first need to create a coherent attractive vision that ordinary people want. That work needs to be done by working together, particularly disabled people in the community, & civil society. Nobody is making firm commitments beyond platitudes to say this is the model we want and this is how we will fund it. It needs to be properly funded for it to happen.
The vision is not hard, but it does require real work. We can evidence this by working together, and there’s a lot we can do ourselves. The other things we ultimately need national politicians to do will be easier if we can lead the way. Let’s reinvent social care.
Citizen Network will be publishing all of the films and a report following the conference.
The word ‘community’ can mean different things to different people. We can talk about community as a group of people with a shared interest or set of beliefs such as a sports club or a faith community. We can describe community as a geographic area in which people live, work and socialise. We can also use the word ‘community’ to describe a people group with a common ethnic or diversity label, a common ideology or political leaning.
For the purposes of this blog, we’re going to think of ‘community’ in three different layers:
Geographic communities (or neighbourhoods) are made up of a series of ‘bumping spaces’ where people congregate regularly on certain days or times of the week; and for certain events or activities. Bumping Spaces are unique to each individual community and are often the beating heart of where relational connections take place. These may be formal spaces such as community centres, libraries or GP surgeries. They may be hospitality-based spaces such as cafes, coffee shops or pubs, or they may be informal bumping spaces which take place around a particular community activity. Have you ever taken a moment to consider where the primary ‘bumping spaces’ are in your own neighbourhood? Sometimes it is surprising to discover where people congregate and where those relational connections are occurring. For example- if you ever walk past a primary school at the beginning or the end of the school day, you are likely to see a group of parents congregating- chatting, sharing stories, laughing together, commiserating each other over a poor nights sleep, and taking their children to the park to play together after school. If you ever walk in a park or countryside area, you are likely to pass many dog-walkers who stop and chat to each other, whilst their dogs play together. If you walk down a nearby canal towpath or riverbank you are likely to see barge-dwellers, boat owners and local fishermen who pass the time of day together. Community develops where natural connections occur.
In the practice of Independent Support Brokerage we often have conversations with people who are isolated and may have only paid workers and professionals in their lives. They don’t often use the phrase ‘My community’ because they don’t recognise or feel a sense of belonging to a particular community. One of the key ingredients in developing independence, resilience and wellbeing is community. Whilst we can’t prescribe community for people as such; we can provide assistance and ‘scaffolding’ to enable people to begin to develop their own natural connections and relationships- based on accessibility, interest, availability and encouragement. Often, people are held back from developing these connections, because they hold limiting beliefs about what is possible, whether they will be able to access anything, whether anybody will be interested in getting to know them, and how much things might cost.
The functions of Support Brokerage open up the conversation with the person by first understanding the essence of them- what makes them tick, what they’re passionate about, what’s important to them. What really brings them to life, what makes them smile and what they’re really good at. These early ‘discovery’ conversations provide the seeds for discovering opportunities (often at the ‘neighbourhood’ level)- for thinking about what might be possible and how we might go about achieving it. That’s the starting point for helping people to connect to their community.
The fuel for driving these types of conversations is resourcefulness.
People who access social care or health funding for their care & support needs are often restricted to a blinkered ‘service’ based view of what is possible. Often their understanding of a good life and good support is limited to a narrow understanding of ‘time and task’ based support- such as domiciliary care visits for Personal Care or meal preparation; or perhaps attending a designated day service or activity group for people with a similar diagnosis or disability. The Care Act actually intended the conversation to move away from traditional service-based solutions, and to actually start with the person and their ‘assets’ (their home, their relationship connections, their skills and other resources available to the person- in other words, the things which are ‘strong’ and available in a person’s life); in order to develop a plan which really supports the person to have a good life, and promotes and upholds their wellbeing- helping them to be really integrated into their local community and part of the diverse group of citizens who reside there. Most of the solutions to having a ‘good life’ reside within Communities in the first place.
Liz Leach Murphy is the Founder of Imagineer Development UK CIC, Chair of the National Brokerage Network and a Freelance Consultant working on personalisation within the Health and Social Care sector/community space.
Sarah Holmes is a Freelance Consultant working on personalisation within the Health and Social Care sector/community space; and a Director of Imagineer Development UK CIC
Both Liz and Sarah are practitioners, trainers and coaches in Independent Support Brokerage and consultancy for Strengths-Based Approaches with collectively over 40 years of experience in the Health and Social care and community sectors.
Imagineer Development UK CIC is a social enterprise based in the North of England with a national reach; originally set up as a test bed for Independent Support Brokerage in the UK. Imagineer is the hosting organisation for the National Brokerage Network, which is a community of practice for Independent Support Brokers. Imagineer provides a range of training & consultancy services in Support Brokerage, Person-Centred and Strengths-Based Approaches.
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