Improving the quality of life for people with disabilities in Shropshire and its Borders.

Story shared 30.6.2021

Originally established in 1991, A4U is a registered charity and Disabled Persons Led Organisation providing support to empower people with disabilities of all ages, their families and carers. We help people to understand their options, make informed decisions and take action to support independent living.

What difference has the pandemic made to the communities you serve?

Our client group all have disabilities, physical or mental health or both.  COVID and the associated restrictions has affected them all in a multitude of ways:

• Social isolation
• Marked increase in anxiety and depression
• Aggravation of existing mental health and physical conditions
• School closures and home schooling with increased expenditure causing financial hardship
• Loss of support networks
• Affected the service provision of all agencies involved in our clients’ care including the NHS, Social Services, the DWP and the Tribunal Service
• Vulnerable clients not having access to their support networks
• Increased financial problems
• Increase in the number claiming benefits, many for the first time
• No face-to-face appointments so agencies are relying heavily on tech. systems – many of our client group do not have either the capacity or the hardware to access or facilitate this and needed assistance
• Medical appointments and assessments cancelled or significantly delayed
• Inability to get evidence that was required to support benefits applications
• Significant delays in benefit payments causing financial hardship
• Increased anxiety and depression impacting upon clients’ ability to manage even what they may have been able to before the pandemic
• Inability to understand the ever-changing rules and restrictions
• Inability to access information about the services that may be available in their area. Shropshire is a rural community.

 

What impact did you see on your services as a result?

We are seeing more complex individuals experiencing more complex problems as a result of delays or inaccessibility of other services.

As advisors, we have found that what previously may have been a simple, single, issue-based case becomes multifaceted. We are seeing more complex individuals experiencing more complex problems as a result of delays or inaccessibility of other services.

Advisors themselves have had to work remotely. Everything takes longer. New methods of working have to be devised to negate any impact upon clients.

It takes longer to build up confidence and trust with the client as contact is mainly via the phone or in some instances, Zoom. Some clients have needed support to access other services remotely where we have been able to arrange to support and advocate for them from our premises in a COVID safe, familiar environment.  Without that support they would have been unable to access other services effectively.

Shropshire Autism Hub

As a user led organisation a large proportion of our volunteers have a disability or long term condition: most were shielding, or had family members who were, so did not want to come into the building or undertake any work face to face. As a result almost all stopped volunteering and a significant burden was then placed on staff to manage the workload.

Our previous operating model for the Hub was primarily a one day provision for a large group attending together, between 35 and 40 people per session supported by 2 staff members and a group of usually 6-10 volunteers.

We were able to provide low level support on a weekly basis, discuss problems that were worrying them before anxiety levels rose too high and provide a safety net of advice and advocacy provision for those who came in with post they couldn’t open or issues that had escalated and they needed help with.

Lockdown prevented us from providing any of this group work. As a user led organisation a large proportion of our volunteers have a disability or long term condition: as a result most were shielding, or had family members who were, so did not want to come into the building or undertake any work face to face, also if they had family to care for that was taking up a greater amount of their time.

As a result almost all stopped volunteering and a significant burden was then placed on staff to manage the workload now involving primarily one to one remote working managing both wellbeing support and in depth casework with limited amounts of face to face for those who were unable to manage the telephone or access online services, or whose mental state had deteriorated significantly.

What has the NET funding enabled you to do for those people you help?

NET funding has allowed us the time to manage the complications that have arisen due to COVID.

Initially all our current clients were contacted to ascertain how they were coping and advise on services available. Clients were able to express their fears and anxieties and we were able to advise accordingly. This contact alleviated some of the stresses and they were aware that, although our office was closed, we were still operating with no reduction to the provision of our services. Contact was ongoing where deemed necessary and had to be targeted for the autism clients to those who did not have a support network around them due to capacity.

The biggest difference has been our ability to add additional staff hours over and above our normal funding streams. We have used some additional part time hours and increased hours for staff where they were able. We would otherwise have had to turn people away, with no real alternative to signpost to.

• Services such as CAB locally have switched all their services to remote working with the majority by telephone which for some of our clients is not accessible, particularly those with sensory impairments or mental health difficulties.
• It has allowed us to manage cases which inherently are more complex due to COVID and address the issues resultant from the reduction in services from outside  agencies, who themselves, are having to navigate new methods of working.
• We were able to purchase additional IT equipment to support staff working remotely where previously they would have hot desked in the office, and we were able to provide a mobile for an extra member of staff to engage with clients via both phone and text message, often the preferred means of communicating for many of our autistic clients.
• Use of additional senior staff hours to support the most complex cases and allocate longer to cases where the need was greatest also helped to alleviate situations where the lack of provision would have led to a significant crisis.
• With regard to our Autism Hub it has given us an opportunity to reconsider some of the issues that our members had previously. Although many attended the large group which was growing all the time, for others it prevented access because the numbers of people, noise and intensity were too much to cope with. Those who attended were managing their condition better, gaining confidence from our workshop sessions and discussion groups but many were left isolated if they could not attend. We simply did not have the resource to be able to expand the service in line with the speed of it’s growth.

We were already aware that potentially we were not providing the service to some of the people who were most in need, particularly in a rural county. Our original intention to focus on digital development fell on stony ground. We found particularly our autism clients really struggled with the concept of Zoom and online activity. Even those who had good general IT skills found accessing the group activity tricky and need some side-by-side support. Many did not want to engage with it at all.

Part of that was to do with the learning process and struggling to engage with anything too taxing or feeling too academic. We did however manage to get some clients to access wellbeing activities online via a local arts organisation who have a very similar outlook to ourselves.

As part of our process of developing independence with our Autism Hub users we had begun to try and encourage them to access services away from us - very gently and with support initially and had started to work with a local arts organisation providing activities for vulnerable young people.

During lockdown this became more critical, they had to close their building and transfer all of their support online. Working together with them we were enable to support some of our service users to access their online sessions such as a music group including songwriting, a creative club doing a range of arts activities and this provided a great outlet for those who really missed the Hub activities, would have been really socially isolated otherwise as they rarely saw anyone else and maintained their confidence despite lockdown.

Our original intention to use an IT provider was changed to sessional support from the arts group who were better able to engage our clients with appropriate activities that took the worry away from online access.

This has helped us develop a close working relationship with the arts organisation and we are looking to develop further collaborative working with them in the future, including potentially animating information from our clients about their experiences as many are uncomfortable with being photographed or videoed. In the current world of social media this would be helpful to share our activities in an engaging way that doesn’t compromise our users confidentiality.

What challenges/opportunities do you see ahead?

We don’t envisage that things will return to being as they were prior to the pandemic for a while yet. There will be very long-lasting effects as many services have found that remote working is a cost saving for them and are looking at ways to continue in the same way.

Our own local authority has stated that it does not intend to go back to office working to the extent it did before. So long as alternative face to face provision is available for those who need it this makes some sense, but a blanket approach is likely to leave many who already struggle to access the services they need even worse off.

The funding has also enabled us to complete an evaluation process with an external company who we already have had links with as they have in the past provided drama sessions for the Autism Hub, who know and understand our user group and are familiar to our autism clients (so able to gain their trust to share information) but still independent of us so really able to gather unbiased feedback and suggestions for future working.

We wanted to know what the key things were about our service that meant the most to them and had the biggest impact on their lives. Gathering this information will enable us to collate responses from our users and their carer’s, staff , and  volunteers for us to complete an analysis that will feed into our business plan going forward and frame our future service delivery.

We hope this will make the future bidding process for funds more straightforward too as we have the evidence to show.

We are aware that there will inevitably be changes as a result of COVID but they will be based upon fully engaging with our users making them truly user led.

 

The future of DPO’s - Why DPOs are important and why we need to invest in them and protect them in the future?

One comment that we have had repeated to us regularly, particularly from our autism clients in recent months I believe sums it up….“I can talk to you because you get me.”

We continuously work with people who are deemed to “not engage” with other services and repeatedly bounce back and forth from services or don’t receive an effective conclusion to their case. Many of our autistic clients struggle with communication but understanding how the condition might affect them enables us to ask appropriate questions and not be phased by unusual behaviour.

People come back to us because we take the time make the simple adjustments to enable them to access our service and above all else we truly listen - from the perspective of people who have been there, or somewhere similar, and really understand.

It isn’t always about having the same difficulty, it is about being in a vulnerable position and understanding the impact that can have.

It is empathy, not sympathy.

The impact that acquiring a disability, having an accident or being told you have a long-term condition that may not get better can have on someone’s life is enormous.

We have many examples from client feedback saying that people who were holding down a significant job, managing a family, feeling that everything was OK who then found that they could not manage what would have been simple tasks which shattered their confidence and made them question their sanity.

The process of applying for benefits can be soul destroying, having to admit your difficulties when you don’t want to and the embarrassment of having to admit you can’t can take their toll. To access a service where this was understood and appropriately supported by people who work with rather than for you to help you gain financial support but also self-respect again is why people return and recommend others to us.

However, seeing someone who has been there, got the Tshirt and managed in some way to make life better again, even if not perfect, can be a great motivator too.

We provide opportunities in an empathetic environment for people to build their skills again, challenge statutory bodies and other employers to consider the needs of people with a disability and encourage attitude change wherever we can.

We would hope that all organisations could operate with the same ethos but sadly we know that isn’t the case, so for the time being we need to nurture the good examples and hold them up as beacons of good practice.

We do not consider ourselves to be a campaigning organisation and do not engage in waving banners or signing petitions, but try to work from inside systems, asking difficult questions and challenging where we feel something is unfair as well as having an involvement in design of new services wherever we can.

We are lucky that in our area this is appreciated by statutory bodies and they are very willing to work with us, understanding the added value that our expertise can bring..

Involvement with the transformation of health and social care, providing evidence collated from a wide range of individuals across all disabilities is a significant element of our work. We are also held up as an example of good practice of co-production, where the input of our service users into the design and running of our organisation is key and can also be shared in the commissioning process.

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Some examples of how the additional funding support A4U's clients 

Case Study:  Ref 7776

Client initially requested advice on a CTC overpayment. She presented as acutely anxious and distressed. 

It transpired that the client had multiple issues.  She was a single parent with four children, all with special needs. They were not in school. Her food bills and utility bills increased due to the family being at home. She was financially compromised.

She was actively contesting an EHCP for two of her children. Due to COVID restrictions, all actions were delayed and meetings had to be held remotely. She was having to try and manage telephone calls and remote meetings  and her paperwork whilst tending to the needs of 4 disabled children; she did not have access to her normal support due to social restrictions .

Her reduced income affected her ability to service a debt that her ex-husband had incurred. She was unable to maintain payments. She had never defaulted before. She was overwhelmed and these issues, combined, were having a huge impact upon her mental health and well-being.

A4U:

• Advised on her overpayment issue and a positive outcome was achieved she was able to continue payments to her debt without penalty
• Facilitated her to access a Shropshire Council ‘COVID’ fund which was a temporary welfare scheme set up by the LA; her application was successful
• Secured food bank deliveries to her home (outside the food bank’s normal procedures) due to her inability to leave her children.

Most importantly, A4U listened. This client was at breaking point  A4U found time for regular, almost daily contact for a significant period. A4U were able to talk to her about all her prevailing problems and facilitate and enable her to manage to cope with  each area of difficulty.

 Just having someone to speak to that could give her time, made all the difference.

 

Case Study:  Ref 7770 

Initial enquiry was a benefit issue. This client had been furloughed during COVID.  This caused financial strain. Whilst furloughed, he suffered a major heart attack  (possibly brought on by the stress) followed by major surgery.  He was told that he would never be able to work again. No benefits had been claimed throughout this period as they had never applied for benefits before. All their savings had been utilised and were now, totally depleted.  Both had significant health issues which were aggravated by the stresses of coping with COVID. They were in social isolation and were not able to access their usual support network. 

A4U:

• Were able to alleviate some of their anxiety by explaining which benefits they were entitled to in terms they could understand
• Was able to ‘fast track’ them to get help from CAB to assist them making a UC claim and ensure they received ongoing support. They were contacted within 24 hours
• Made referrals to food bank (over and above the usual 3 parcels)
• Signposted clients to apply for help from the LA’s Welfare Assistance scheme set up to help people financially compromised due to COVID. This was successful.

A4U were pivotal in giving appropriate advice at a crucial time thus alleviating further stress and anxiety.

 

Case Study:  Ref 7810

Gentleman in supported housing who had been moved from Worcestershire to rural area of Shropshire. Client initially presented with benefit and social care queries. Caseworker undertook a thorough investigation into his benefit entitlements and his Care package. It transpired that he actually was in receipt of appropriate benefits and care packages.

His problem was social isolation. He was in a new area and was struggling with COVID restrictions. He had become very depressed and socially isolated. He wanted to talk. He was lonely.

A4U:

• Listened
• Gave him details of social groups and services that were available either in, or near to his village that he could easily access
• Advised on services that he could access locally which would be able to help him domestically even in the pandemic. 

The main service that we provided, was taking the time to investigate his real problems and to action appropriately. He appreciated the continuity of our advice. He appreciated having someone who actually took time to listen and then actually give some practical help and advice. 

 

Read more about A4U