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For Christmas 2023, we are sharing our #12DaysOfSelfDirectedSupport with twelve top tips for Self Directing your Social Care and Health support.

You can reference this as a complete tool kit for Self Directing your own support or you can select the sections which apply to your own personal circumstances.

Day 1: Your Rights

For people at the beginning of the process of accessing Health and Social Care Support, a good place to begin is to learn about their rights.

The Care Act 2014 is the legal framework which governs the provision of Health and Social Care in England. Visit the .gov website for a range of Factsheets about the Care Act to find out more.

Day 2: Assessment

Everyone has a right under the Care Act 2014 to request an assessment for Adult Social Care support if they believe they have eligible needs. Carers can also request their own assessment for support under the Care Act.

Read our Information sheet about #eligibility to help prepare for a Care Act assessment.

Day 3: Personal Budget

Everyone who has been assessed as having eligible Social Care needs has a right under the Care Act 2014 to request a Personal Budget in order to #SelfDirect their support.

A Personal Budget is a way of choosing how your support will be paid for and managed. It gives you the level of control you want over how your support is planned, organised, provided and paid for.

Read our past blog article about #ChoiceAndControl which shares a real life example of a situation where a #PersonalBudget could make a real difference to someone’s #Outcomes.

Day 4: Personal Health Budget

If you have received a #ContinuingHealthCare assessment, and have been deemed to have #eligible needs, you may be entitled to a #PersonalHealthBudget to #SelfDirect your support.

A Personal Health Budget is a way of being in control of, paying for and managing your own Health support. It gives you the level of control you want over how your Health support is planned, organised and provided.

You can choose to receive the budget as a payment to a bank account or you can ask a #ThirdParty organisation to manage the budget and make the arrangements on your behalf.

Read this fact sheet from NHS England for more information.

Day 5: Circle of Support

If you are choosing to #SelfDirect your own support, a good place to start is to think about the people who are important in your life, who are great at helping you, spending time together and who understand you really well. These are the people who you might want to involve in planning your support, exploring your options and helping you to make new connections in your local community. We sometimes refer to this group of people as a ‘Circle of Support’.

Watch our explainer video with Mollie to find out more about #CirclesOfSupport

Day 6: Advocacy

Sometimes, people who are choosing to #SelfDirect their own support might need some help with expressing their wishes and preferences to ensure that their assessment and support plan is #PersonCentred

The person is entitled to an advocate under the Care Act 2014 legal framework. There are several different types of advocates who can help, depending on the type of issue or support required:

-Care Act advocate

-NHS complaints advocate

-Mental Capacity advocate

-Mental Health advocate

-Independent advocate

Voiceability have some excellent information on their website, including an explainer video about #Advocacy

Day 7: Support Brokerage

Sometimes, people who are choosing to #SelfDirect their own support might want to work with somebody independent of the Local Authority or NHS to explore their options, talk about their ideas and hopes for the future and put their support in place. This is where working alongside an Independent Support Broker can be really helpful in opening up ideas, options, possibilities and solutions for the person, and keeping the momentum going so that the person receives the support they want to achieve their outcomes.

To find out more about #SupportBrokerage watch our explainer video

Day 8: Dreams

In the process of thinking about the future, making plans and organising support; Dreaming is an important part of listening to the person in order to understand what is important and to explore ideas which help the person to experience a good life, based on what they have shared about their dreams.

We have a simple template available to download for #free from our website, with an explainer video to support conversations about ‘Dreams’.

You might also be interested in watching our webinar on ‘Dreams’

Day 9: Explore your options

Once the person has had opportunity to learn about their rights, think about how they want to receive and manage the budget for their support, it’s time to explore options for how the person wants to live their life and how they would like to receive support to do that.

It’s not just about looking at a ‘directory of services’ available in the local area. It’s about starting with the ideas the person has expressed about their life and their future, and then exploring possibilities about how the person could be supported to achieve these outcomes. It might not just be about what is available locally, but about exploring about how to make something happen which does not exist yet. #SelfDirectedSupport is a mechanism which supports this approach, and allows the person to tailor their support in a way which makes sense for them.

The Person’s #CircleOfSupport might also offer to get involved in exploring opportunities and making connections for the person. The person might use some of their budget for paying for support, but some of these opportunities and connections may be relationship-based and without a financial cost attached.

Here are some tools and templates which could assist with this process, and are #free to download from our website.

Day 10: Build connections

Once the person has had explored their options for activities and support, and expressed what they would like to do, the next step is to actively start building connections with people and places the person is interested in. .

The Person’s #CircleOfSupport can offer support with this process (in making introductions) or the person might want to build connections independently.

A tool which could assist with identifying the people and places where the connections need to happen is called ‘The fifth circle’ and it is #free to download from our website (along with an explainer video about how to use it).

Day 11: Support Planning

Once the person has had explored their options for activities and support, built connections in their local community and expressed how they would like to be supported, the next step is to develop a clear #SupportPlan with all of this information, showing where each activity or form of support is sourced from, any associated costs, and the source of funding which will cover the cost of this. An itemised and costed Support Plan can be shared with the person’s social worker or care co-ordinator if funding agreement is needed. This is what a #SelfDirected Support Plan should cover.

The person can say if they want to employ their own #PersonalAssistants to support them or if they want to use an agency to provide support. They can say how they want to receive their budget (if they are eligible) to pay for their support, and they can decide how they want their budget to be managed. This information can all be included in the Support Plan.

At Imagineer we follow the #SevenCriteria for developing a Support Plan:

  1. What is important to the person?
  2. What does the person want to change or achieve?
  3. How will the person be supported?
  4. How will the person use their budget?
  5. How will the person’s support be managed?
  6. How will the person stay in control of their life?
  7. What are the steps to making the plan happen?

By covering all of the information in the #SevenCriteria questions, we can be confident that a comprehensive and effective support plan has been developed in #Coproduction with the person and anyone involved in helping them to make decisions.

Our webinar ‘Introduction to Support Brokerage’ covers some of these key ideas.

Our #free template series ‘Getting the support right’ also has some helpful tools which you can download to use for working out the content of the Support Plan.

Day 12: Make it happen!

Once the person has developed their #SupportPlan and received agreement from Social Care or Health funders, it’s important to keep the momentum going so that the plan is actually put in place. This is where working with a #SupportBroker can be really helpful to coordinate who is going to do what, and creating an action plan which everyone involved agrees to and is held accountable for.

Our #free template series ‘Making it happen’ has some helpful tools which you can download to use for implementing the Support Plan.

We hope you find it useful!

Say hello to the flexible shape of Self Directed Support

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.

A world that should no longer exist

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.


Flexible commissioning and flexible budgets

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.

The future of commissioning

(Based on an image concept by @waitbutwhy)

We have a way forward

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 ICB) 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

To keep up to date with Imagineer & Support Brokerage Network, sign up for our mailing list.

Leah’s story

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.

Tell us about the people who you care for. How old are they? What sort of things do they need help/care with?

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.

How much of your time each day/week do you spend caring for your family member/s?

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.

 

Do you ever get a break from caring? If so, what sort of things do you like to do when you have a break?

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.

 

If you could have better support as a family carer, what sort of things would make life easier for you and your family?

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.

How Imagineer are involved with supporting Leah:

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: info@imagineer.org.uk to request a call-back for an informal discussion, or a referral form.

For more information about Carers Week 2021, visit: Carersweek.org

 

What do we mean, when we talk about ‘Community’?

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:

  1. Individual level: A citizen living within their local neighbourhood and with a network of place-based and relational connections unique and specific to that person (“My Community”)
  2. Neighbourhood level: A larger group of people sharing a common geographic base, relational connections, facilities, resources and spaces; with a shared sense of ownership which is connected to that hyper-local geographic area (“Our community”)
  3. Society level: A population based on the more complex systems and values embedded within law and citizen life. (“THE community”)

Bumping Spaces- the places where community happens

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.

How does Independent Support Brokerage assist with Community development?

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.

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How can we understand the potential and momentum of meaningful connections?

We connect with the world around us via People, Places and Opportunities. People who receive Health and Social Care service-based support often have limited networks which mainly consist of paid workers, professionals who are in their life on the basis of their label or diagnosis, and limited friend/family involvement. The potential and momentum of people’s relationship connections can really begin to unlock opportunities; which do not reside within formal statutory or service-based provision.

A key aspect of Independent Support Brokerage is exploring people’s connections. Not only does this help us to establish who the important and significant people in a person’s life are; but we can begin to identify opportunities to build further connections through which relationship ‘chains’ can be created. This approach can provide a springboard into new networks, communities and opportunities, helping to reduce dependency on statutory provision which is often very costly and exists on the basis of a financial transaction rather than a relational connection.

Supporting people to identify and develop their connections can result in an enriching experience for all involved, and can help to develop community-based resilience over time.

People-based connections:

Who we know, and who they know!

Place-based connections:

Where we go and who we might bump into or develop a connection with when we’re there!

Opportunity-based connections:

What we’re interested in, which we might have in common with other people we could then form a connection with on the basis of shared interests, skills, passions, hobbies or beliefs.

Community treasure chest

One particular way we can support people to identify and develop connections is through using an approach called ‘community treasure chest’.

The focus of the approach is the principle that individuals within groups of friends/neighbours, a circle of support or small community-based grass-roots organisations all hold ‘treasure’ which can be gathered to share with the group; and this ‘treasure’ provides points of connection which enable them to achieve outcomes & objectives.

As individuals within the group, you each take turns to share information about people you know who may be useful for others to connect with; your passions, obsessions & interests; your skills, training and knowledge; and something you are interested in learning about or doing. By doing this, key information is gathered which can then inform action planning, support planning or even business planning.

How does a Support Broker help people to build connections?

In the scenario where a Support Broker is working alongside a person to help them self-direct their own support, they can use this approach to build on the information they have already gathered about what the person is interested in; their hopes, dreams and aspirations. This helps the Support Broker to identify where connections can be made from the person’s existing network in order to grow those connections and relationships further.

Story: Rugby passion!

A gentleman used a regular bus route and the bus driver got to know him. The gentleman would always get off the bus at the same place, and while he was waiting to get off, they would always have a chat together. The gentleman’s family & friends noticed that he talked about the bus driver a lot and they explored how they could help to build on that relationship. The bus driver frequented a local pub and invited the gentleman to join him for a drink. In time, the gentleman got to know other people in the pub and became involved in many social activities which were connected to the pub community such as quiz nights, karaoke etc. It was discovered that the gentleman supported the same Rugby team as other people he spent time with at the pub, and he was invited along to go to the matches together with them. Over time, he began to make friends with other supporters who attended the same matches and he became involved in a much bigger community network on the basis of his shared love of Rugby. These connections grew from the basis of one initial relational connection in the gentleman’s local community and his day to day routine.

Working with people’s connections is a ‘Strengths-based approach’. In other words, it is focusing on things which are positive, good and strong in the person’s life and then building on those things; rather than starting from a perspective of ‘need’, risk or deficit.

What next?

We’d love to hear from you about your stories and examples of how people are being supported to build their relationships and connections. Please email us info@imagineer.org.uk if you have a story or example you’d like to share.

Imagineer offers a range of training & mentoring services to support the knowledge and practice development of practitioners; and also to help people to know and understand their rights.  Visit our website for further details.

You can also subscribe to our mailing list if you would like to be kept up to date with what we’re doing.

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