Category: Lucie Martin-Jones

Context  

Since March 2020 when the global C-19 pandemic began, WECIL has continued to deliver all our services remotely to meet the needs of the disabled community. Despite some challenges we have been able to continue to work towards the aims of the City Fellows in ‘the ‘development of new systems which are truly person-centred and target supporting disabled people towards independence and control and the One City Plan aim to work towards ‘integrated health and social care’ which ‘seamlessly meet(s) the ever-changing needs of our communities’ 

Progress Report 

1.‘Make it Local’. 

WECIL have received £55k funding from Bristol City Council for 2020/21 for its role in the Make it Local initiative.  Make it Local aims to bring together BCC as the commissioner with key anchor institutions to create market innovations in Adult Social Care, specifically to introduce supply of home care that is both locally and socially owned. WECIL’s role was envisaged to be two-fold; partly to ensure that any new interventions into social care for disabled people are genuinely co-produced with disabled people who are users of the care system, and partly to focus on how the initiative could be used to improve the outcomes for people who use a Direct Payment to manage their care and in particular, those who use a Direct Payment to buy commissioned services. 

Whilst we have been entirely supportive of efforts to shift care delivery away from private sector providers through the development of locally-owned social enterprises, WECIL argued from the outset that this was focussing on the wrong part of the problem and that the focus should be on how the initiative could be used to increase the levels of choice and control disabled people have into how their care needs are met (as is intended by the Care Act) rather than who supplies the ‘units of care’ prescribed by social workers. Improving the supply of the same services without questioning whether these services are what best meet the needs of an individual is merely tinkering within the system rather than acting on the system. 

As such, WECIL has been successful in introducing a new tool for self-directed support planning (Create My Support Plan) which enables an individual to identify their own objectives for achieving independence. We have also begun to develop a pilot of Individual Service Funds (ISFs) with a greater scope for varying the services which a citizen’s personal budget can be used to procure and are working closely with BCC and third sector provider, such as BS3, to develop a market of services for ISFs. We are also working with BCC’s Deputy Director of Adult Social Care and a range of Direct Payment Champions from across his department to apply WECIL’s systems thinking methodology to the study and redesign of the Direct Payments system to better meet the objectives of individual citizen. 

2. Create My Support Plan 

https://www.createmysupportplan.co.uk/  

We have, with the support of a grant from BCC, been able to update our Create My Support Plan tool (CMSP). The tool allows an individual to carry out their own, person centred support planning and share this with whoever they want (i.e., family, social workers, PA’s, GP’s) therefore removing the need to tell their story multiple times, to enable them think about solutions which meet their needs and to feel prepared for a care assessment or review. The tool is even more relevant during a time where agency PA’s may need to be drafted in to support someone if their PA is off sick or isolating.  

3. ‘Self-direct, Connect & Support’ Navigators  

Through the National Lottery Community Fund, WECIL secured funding to support disabled people in response to the C-19 Crisis. We have set up a ‘Navigator’s team to provide a single point of entry into our organisation to ensure that disabled people have somewhere to go for support during the pandemic. Due to the flexible nature of the funding received, our navigators have been able to have in depth, limitless conversations with people. Our systems thinking ethos reminds us to listen to ‘what matters’ to our customers rather than pigeon holing individuals into funded services with set outputs/ outcomes. We have been taking a holistic approach to understanding all the elements of what matters to an individual in their lives. From care needs to social interaction and everything in between. Since October we have worked with approximately 100 individuals. We have helped people to access emergency grants for food and household items, linked people with befrienders, supported people with benefits and care changes as well as more unusual requests- supporting someone to relocate to Bristol, getting a fence fixed for a family with an autistic child which posed a safety risk, helping people to understand their bills, linking disabled people with services in their area where we previously would have signposted and much more. One of the key commonalities we are finding is that just being available to listen is proving a massive help to the people who access the Navigators team.   

The data and learning we are gaining from the Navigator’s project is helping to inform a complete redesign of our organisational/ service structures. We are gaining a real understanding of what matters to our community on a holistic level and how supporting someone to achieve multiple goals in their life brings greater independence.   

The Navigators team are also leading on the ISF trial work starting in Jan 2021 with an initial cohort of 10 individuals.   

4. ISF (Individual Service Fund) Trial  

Most Disabled people either use Direct Payments to manage their own support or receive council managed Commissioned Services using contract between the council and the support provider. Direct payments have a high level of choice and control, but also a high level of responsibility for the individual. Commissioned Services have low levels of choice and control, but the responsibility remains with the council. 

Independent Service Funds (ISF’s) are a middle option which gives Choice and Control without all the responsibility of managing a Direct Payment. 

Currently ISF’s are an underdeveloped option and it is thought less than 1% of Council spending is via ISF’s.  

WECIL and Bristol City Council are undertaking a ISF Pilot scheme between January 2021 and July 2021, where WECIL will work alongside the Council and the individual to complete Support and Care planning giving the individual the Choice and Control and then act as a Broker to source and pay for services from providers to meet the individual’s outcomes, taking away the responsibility from the individual. 

It is hoped that during the Pilot WECIL Navigators will work with 20 individuals currently funded by Direct payments. The Navigators team will use Create My Support Plan alongside the individual to carry out the initial support planning and to source suitable opportunities to fulfil their support needs.  

Currently Direct Payment are paid for based on a Time and Task model. The ISF pilot will allow the individual with WECIL’s support to take this Time and Task funding and use it more creatively to meet their outcomes. 

It is hoped the ISF pilot will show how ISF can give the individual the same Choice and Control as a Direct payment, but also without the responsibility. It is also hoped by using the funding more creatively and moving away from the Time and Task model it can also be demonstrated that this approach is better at meeting individual’s outcome and more cost effective for the Local authority.  

As part of the pilot, individuals will be able to purchase services directly from VSCE and healthcare providers for example purchasing their attendance at a Peer Support group on a weekly basis. The longer-term aspiration for the ISF trial is that the purchase of services/ activities will help to financially support the sector rather than relying on external funding.  

5. Health and Wellbeing Board  

As part of the fellowship, it was agreed with the support of the City Office that we would engage with the One City boards to help influence the involvement of people at the margins of decision making within the city, primarily with input with the One City Plan refresh. Dr Helen Manchester and I have been working with the Health and Wellbeing board and have attended a workshop event to understand how participation currently happens and what is missing. The consensus is that changing the way participation happens to be more inclusive of our communities is a long-term ambition rather than just to impact this most recent iteration of the One City Plan.  

We are in the process of setting up a working group of ‘allies’ from the board to take this work further as well as a stakeholder event in February (VCSE sector, care providers, businesses, other Board reps etc.)  

The overall purpose of the stakeholder event is to see how groups, organisations and individuals would like to interact with HWB and how they can participate in work with BCC and NHS.  

We have had discussions about the very formal way in which information gets to the HWB through reports etc. and how exploring different modes of communication/ feedback could give communities more of a voice in decision making.  

Next steps:  

• Health and Wellbeing board stakeholder meeting  
• ISF trial  

Context – Covid-19/other

In early March 2020 the global Covid-19 Pandemic reached Britain which saw WECIL entering emergency response mode immediately. Within the space of a week WECIL’s whole delivery model needed to be overhauled and adapted as well as mobilising our entire staff team to work at home in the space of two weeks.  

This meant that we cancelled all home visits and face to face appointments, groups for young disabled people, office walk ins, volunteering activity and group courses. This affected our Independent Living Payments team (Direct Payments and Payroll), benefits advice, advocacy, employability services, short breaks for families with disabled children, inclusive youth groups, participation groups and befriending services). Sadly, the support we provide to Businesses on a commercial basis (which is a crucial income generating part of the organisation) pretty much stopped overnight. This includes Disability Equality training, access audits and supporting organisations to become Disability Confident.  

What that means for you/ Challenges that this has presented         

Positively we managed to get staff working from home pretty seamlessly as home working was already part of our working culture and the technology was in place as part of our risk mitigation. To date, no existing grant or statutory contract funding has been significantly reduced and staff have worked hard alongside members and funders to find innovative solutions to support our community such as running Zoom courses, Facebook live youth sessions and increasing telephone support.  

I had to step into another department (Independent Living Payments Team) to meet rising demand by reallocating my own workforce and finding solutions from a Community Development perspective to meet the need. 

As a Head of all Community based services this did mean that personally my attention was heavily focussed on adapting services and working hard to retain staff and funds. As a fellow, this has meant that face to face interaction with our community has been much more limited and some of the plans I had for engagement have had to be put on hold. This is especially relevant to the creation of the Disabled People’s Co-Production Toolkit due to the challenge of not physically being able to engage with members.  

The disabled community will be and are disproportionately affected by C-19 with many people’s requirements to shield continuing much longer than the ease of lockdown. The narrative within the media has portrayed ‘older and vulnerable people’ for whom C-19 is more likely to be fatal, as almost disposable causing great anxiety for the disabled community.  

The impact of increased long term social isolation and the inability to access supportive therapies, medical appointments, planned surgeries and social interactions will have a knock on effect on physical and mental wellbeing for disabled people which in turn will create an increased demand for care and support.  

Access and inclusion will always be an issue whilst we work in this way as many will not be able to access online/ telephone interaction or have the means to do so, however, this has also opened up opportunities for people to engage with us who may have previously struggled to do so.  

Opportunities this offers

As WECIL’s fellowship proposal focussed heavily on the ‘development of new systems which are truly person-centred and target supporting disabled people towards independence and control’  and the One City Plan aim to work towards ‘integrated health and social care’ which ‘seamlessly meet(s) the ever-changing needs of our communities’, C19 has given us an opportunity to review our internal systems as well as working closely with BCC and other stakeholders to effectively support emergency response systems. From involvement in meetings with other third sector organisations (both locality based and representing communities of interest), this seems to be the consensus across the VCSE sector.  

Early on in lockdown, we worked closely with local authorities Bristol City Council, South Gloucestershire and B&NES to risk assess over 800 disabled people who receive a direct payment. The purpose of the risk assessment was to understand how ‘vulnerable’ their packages of care were. For example, if a disabled person relied on one PA (Personal Assistant) for significant care needs/ hours and this PA became unwell or needed to self-isolate this made their care very vulnerable. If a disabled person had a bank of four PA’s who supported them with general daily duties, then their care was less vulnerable as they could rotate PA’s or reallocate some of their care needs. Other considerations included the health conditions of the disabled person and if they were required to self-isolate (a high proportion of our community), if they needed help with medication, eating, washing, moving etc. and would not be able to maintain their independence without this support. Our intervention and support with this activity has resulted in wide recognition and praise of WECIL and WECIL staff resulting in more cohesive working relationships and an understanding of our trusting relationships with disabled citizens. It also uncovered a high volume of people who felt anxious and isolated due to the global pandemic.  

Make it Local  

As part of ongoing work and discussions with BCC we have now had confirmation that WECIL will receive £55k from Power to Change for our role in the ‘Make it Local’ project 

This will be the cross sector collaboration described in our City Fellows proposal bringing together  

• WECIL  
• A locality-based anchor organisation (BS3)  
• BCC Adult Social Care Commissioning  
• Locality UK (national community anchor infrastructure org)  
• Other representative local anchor and key local (strategic) VSC organisations (e.g. in BS3, Windmill Hill City Farm)  

WECIL’s role will be to work with local disabled people managing their own care at home or wishing to move to doing so to establish how they would choose to use their personal budgets to meet their care needs if the system were truly person centred. 

As a partnership we will then  

• Describe (at high level) the resources and assets in the area, and their capability to meet the aims identified by disabled people managing their own care  
• Present (and debate) the challenges in the area from a general community and from a social care perspective (including local social care “market”).  
• Scope the feasibility of developing a local, community-owned enterprise which can meet the care needs gap identified 

Create My Support Plan  

We have also received £18k of funding from BCC to update WECIL’s support planning tool (Create My Support Plan- CMSP) which has been underutilised since its inception. The tool gives a disabled person the ability to carry out a self-directed care assessment which can be shared with whoever the individual wants to understand their care needs. This includes PAs, family, Social Workers and Advocates. Aside from influencing a culture of ‘person centred care planning’ in general, this is especially relevant during C-19 when disabled people are needing to draft in temporary care and support from people who do not know and understand their needs.  

Additionally, people need to find alternative means of meeting their care needs as previous means may no longer be available.  

The tool will link in with Well Aware so that the individual will be able to also direct themselves (or with the support of a navigator, family member or PA) to other areas of support available to them within their area for example, mental health services.  

Care Act ‘Easement’s and the Coronavirus Act  

On the 25th March 2020 the government passed the Coronavirus Act. For disabled people this means the rights disabled people are entitled to through the Care Act, including Local Authorities having the duty to assess people who might require care and support and make the assessment centred around what matters to the individual, were impacted. The Coronavirus Act means that Local Authorities have the option to suspend some of these duties if they can say that this is reasonable to help manage the burden of C19 on health and care systems. These are rights that disabled people (including the founders of WECIL) fought hard to win to give them more choice and control in their lives.  

This was deeply worrying for WECIL and alongside our commitment within the fellowship to ‘work with disabled citizens, commissioners (e.g. Bristol City Council Direct Payments Team and BNSSGCCG Continuing Health Care)’ ‘to identify system conditions which: Contravene the Care Act’  in response we have managed to keep an open and ongoing dialogue with the Head of Bristol Adult Social Care regarding our concerns and the need to meaningfully include disabled people and users of care in decision making around easements. We also worked alongside Irwin Mitchel Solicitors who provided pro bono support to us to compose an easier read statement and information for our community to enable them to feel equipped and supported to challenge any decisions which could be in detriment to their Care.  

What is more/less important now

It is more important than ever due to the context given above, that ‘development of new systems which are truly person-centred and target supporting disabled people towards independence and control’ are developed and reviewed.  

The C-19 crisis has given wider society the chance to look at how life was and how it could be. Even simple measures such as employers making adjustments for staff to carry out home and flexible working if continued, opens up opportunities for wider access and inclusion for disabled people within the employment market. Arts and culture has become available in new platforms such as online (National Theatre Live Streaming) or through the use of Telepresence Robots meaning that disabled people who even before C-19 couldn’t access these spaces have now been able to.  

There is discussion of pedestrianizing large parts of Bristol which is an opportunity to look at the wider access issues many disabled people face when navigating the city and disabled peoples’ voices must be present in these discussions.  

In terms of health and care systems, the strain on Local Authorities and NHS from C-19 will undoubtedly create a long-term impact on resource and a backlog in assessing and providing commissioned care. WECIL believes that by placing the citizen at the centre of their care planning and decision-making focussing on ‘what matters’, not only does this make care more effective and personalised but this is cost saving in the longer term. Through the use of tools such as CMSP the citizen, with the support of WECIL completes the initial care assessment/ review process drawing in Social Care decisions later on and subsequently saving on resource for social care teams. Also, encouraging asset-based ways of assessing with the linking to Well Aware, the disabled person is also able to identify what other support is available to them potentially reducing the need for more funded care hours.  

Through delivering our C-19 befriending and social services, we are able to engage with disabled people who are socially isolated and identify some of the challenges people are facing offering support, signposting or safeguarding to contribute towards the prevention of a decline in mental and physical wellbeing.  

What are your priorities moving forward?

Whilst face to face engagement has not been possible as I had envisaged in my role as City Fellow, we have now opened up new platforms for disabled people to engage with us. For some people, using an online platform is more accessible for example for those who struggle to get accessible transport or find group environments anxiety inducing. 

I would like to harness these new opportunities to engage with people to attract those whose voices have not previously been heard into these really important conversations about the future. At a strategic level I feel that WECIL have made excellent progress with our City Fellow’s proposal however on a personal level I want to be more engaged with our members and actively promote the inclusion of their voices and opinions in city wide decision making.  

My immediate priorities include:   

• Make it Local 
• The roll out and promotion of CMSP 
• Inclusive employment practices- engaging employers with WECIL’s WorkASSURED programme for disabled staff  
• The redesign of Care Management Advocacy Services