Personal experiences of managing an Option 1 support package

Published in Features on 8 Jul 2020
Jim Elder-Woodward OBE
Jim Elder-Woodward OBE

Dr Jim Elder Woodward OBE describes his personal experiences of self-directed support during Covid-19. 

My normal

At the outset, it might be best to state ‘my normal’ before the onset of the Covid-19 pandemic. As a 73-year old man, born with cerebral palsy, I have had life-long experience of disability, not only as a health and social service user, but as a service provider, planner and researcher.   

I retired from Glasgow City Council in 1999, where I was a Senior Social Work Officer (Physical Disability). Whilst working within local government I established both indirect and direct payments throughout the west of Scotland; as well as assisting in the development of the Glasgow Centre for Inclusive Living, alongside other disabled people.   

Since retiring, I assisted a large voluntary organisation to reconfigure their services from residential to community provision, and assisted groups of disabled people in South East Europe to develop independent living opportunities after the Balkan War. For those services I was preferred an honorary degree from Glasgow University, and an OBE from the Queen. I also used my writings to go back to university to take a PhD by Previous Publication. I am currently studying for a MPhil and continuing my civic participation by being on the boards and chairing several civic society organisations.

I control my own 24/7 personal support package. This support package is jointly funded by my local Health and Social Care Partnership (HSCP) the Independent Living Fund Scotland (ILFS) and myself, via my care tax (‘financial contribution’)

It should be noted from the outset that any criticism within this document is not directed at any individual within the system of health and social care.  It is solely directed towards the system itself.

Pre-existing anxiety and stress exacerbated by lack of support 

I had been under extreme anxiety and stress, since November, 2019, when my stairlift was condemned due to spares being obsolete.  At that time, my Occupational Therapist had told me that it was ‘extremely unlikely’ that the stairlift would be replaced, as I had ‘adequate space’ to live downstairs. Since that notification, I had been doing my own research about local authority complaint procedures and judicial reviews of local authority decisions.  I had also contacted academic law experts on legal cases taken against local authorities. The processes involved, and outcomes of such, proved to be very disheartening reading. Therefore, at the outset of the Covid-19 pandemic, I was not in a good place. Subsequent to the outbreak, in mid-March my stairlift finally died; so, along with my partner, who is also a wheelchair user, I have been marooned in the upper part of my house.

The pandemic also came at the end of the annual holiday period, so three of my five Personal Assistants (PAs) were hastily using up their annual holiday allowance. I also had another on maternity leave. So, I was really struggling to find cover.  

Lockdown – self-imposed cuts

When ‘self-safeguarding’ was announced, two of my PAs informed me they were in self-imposed lockdown. I was therefore, left with two PAs to cover my 24/7 support package. There was also confusion as to how to pay for PAs on lockdown. Due to the lack of clear information from my HSCP, on 26th March I put my two ‘safe-guarding’ PAs on contractual sick pay, and cut my hours to 6 hours day support and 8 hours sleepovers. This is an example of the criticism academics make of ‘neoliberal management’ within the personalisation agenda of social care support. Decisions to cut the budgets of individual support packages are taken independent of the recipient, by senior managers within local authorities – but the actual cuts to services are deployed to the recipient. Only here, it was the lack of additional expeditious material support to manage the crisis, which ultimately forced me to cut my own support, in order to fund my PAs who were self-isolating.  

Physical and mental breakdown   

It is unfortunate that throughout this period there was great uncertainty and often confusing pieces of information flying about the system. Despite my requests for information, from the 12th of March, my HSCP circular for PA Employers did not arrive until the 24th April. In the meantime, most like myself, had two pay roll deadlines to meet. Unfortunately, my HSCP circular was not easy to read, let alone in easy read; nor did it say it was in alternative formats.

In a state of high anxiety, I appointed someone without doing a PVG check on her. It was as a temporary measure, and I was desperate for help. She was a great worker and I was impressed by the way she did her job. Unfortunately, money, and jewellery were found to be missing, after one of her shifts. The police were called in, but they said there had been too many people. My employment lawyer said without proof I could not sack her, either.

It was at this time I had a complete physical and mental breakdown. The doctor said it was like a TIA, when the brain just closes down from shear anxiety and stress. My nephew took control of my support package for 24hrs, during which time he asked the PA in question to leave. The next day I took back control. I reorganised my rota giving myself 6hrs day support, and 8hrs night support. The ILFS subsequently gave me money for an additional 4hrs day support. The only material offer of support from the HSCP was for a home help to come in ‘to make (me) comfortable in (my) wheelchair after using the toilet’. I have been naked from the waist downwards, whilst sitting on my testicles, for most of the day since lockdown. This is the only way to keep continent during the time when I have no support.

Covid-19 highlights/ fallouts

I think what becomes clear is the often-critical point that, in most cases, there seems to be a reduced commitment among HSCPs to their ‘duty of care’ towards those clients who choose ‘Option One’ of the 2013 legislation – direct payments. Certainly, within the Covid-19 pandemic, we seem to have been the last in the queue.

I do believe another highlight of the pandemic is that it has shone a light on the rather asocial features of the neoliberal management of social care support exhibited by local authorities. These features include the rigidity of behaviour to the confines of set procedures to the detriment of convivial and warm human interaction. Instead of proactively going out to assist its clients in what has been a disastrous crisis, it has been stuck in its mechanicalistic behaviour of gate-keeping assessment paperwork to control resources. This was in contrast to the ILFS approach of: “What do you need now; and we will sort things out later.” Although, I am grateful to my own social worker who maintained his own relationship-based practice by personally delivering some PPE. Nevertheless, whilst the UK government (as well as the Scottish Government) were throwing billions of pounds to support non-disabled people, local authorities mostly continued their Scrooge like behaviour of pouring over their account books, gate-keeping need and deciding what minimum, if anything, they might provide to their disabled clients; whilst withdrawing services to others, altogether. 

Another fallout of the Covid-19 pandemic is that it has highlighted the maxim: ‘you cannot empower the individual without empowering their group’. In other places, e.g. Glasgow, there are two large disabled people’s organisations (DPOs) – the Glasgow Centre for Inclusive Living and the Glasgow Disability Alliance. Both of these DPOs conducted proactive programmes of mailings and telephone conversations to combat isolation and loneliness, as well as providing practical advice and peer-counselling. Nothing like that happened within my locality.

The need to develop agency/ advocacy    

As a final point, it should be noted – without blowing my own trumpet – that unlike the majority of disabled people, I do have a certain amount of agency and social assets/ networks at my command. But even so, I got myself into a pickle, and it took me weeks of persistent nagging of authorities and personnel therein to get any clear information, let alone material assistance. Apart from the ILFS, there was absolutely no material support, from the HSCP to assist me as an independent employer, with responsibilities as such. To the local authority I was a dependent client of social care support. They did offer me assistance to cover for PA absences, through their existing home care services. This was a helpful gesture, but it would have been much simpler and more empowering to offer additional  financial support (as the ILFS did) to enable me to manage my support package at times of crisis. With the additional money from the ILFS, I was enabled to employ, on a temporary basis, a friend to cover some of my shifts. It was unfortunate that her ongoing back injury meant she had to leave; whence my senior PA came back from her self-imposed shelter.

Despite my agency and social assets/ networks, it still required the emotional and practical support of my family; as well as the emotional and financial support of the ILFS to extricate me from that pickle. And, I must add my thanks and appreciation to my fiancée, who has been such a good and caring support, as she too has been trapped upstairs with me.  

But I often wonder, what about those who may not be so blessed by these resources? What efforts are being made to develop their agency and social networks? Doesn’t this pandemic highlight the need to develop peer advocacy and group identity/ peer support?  

The ‘New normal’

During the pandemic, various commentators have been mentioning ‘the new normal’. Some have optimistically envisioned a society, which has learnt the value of social care support, so will increase its resources; others are saying that the Tory government will revert to its neoliberal management of the public services, and execute even greater cuts, in the face of the inevitable forthcoming recession. Throughout the pandemic my fear has been the latter.  

On a more positive note, if anything can be learnt from this pandemic, which could be transferred to the ‘new normal’ it is that disabled people and their directly accountable organisations must be not just at the centre, but at the heart and mind of any economic, social and civic decision-making within society and its organs. If not, I fear we will be squeezed even farther to the edge of society. There to be terrorised even further by the tyranny of the non-disabled majority. 

About the author 

Born with cerebral palsy, Jim Elder-Woodward has had life-long experience of disability, not only as a health and social service user, but also as a service provider, planner and researcher. He controls his own 24/7 personal support package.

After taking a degree in psychology, Jim studied health and social welfare in Sweden, Germany, Israel and Albania. In the UK he has worked for central government, local authorities, the health service, the voluntary sector and universities. He retired from Glasgow City Council in 1999, where he was a Senior Social Work Officer (Physical Disability). 

He has written a number of articles and papers on disability and independent living, including co-authoring a book for social care workers on the subject. Jim is a representative of a number of Boards and groups including: 

  • Chair of Scottish Independent Living Coalition
  • Convenor of the Glasgow Centre for Inclusive Living
  • Chair of the Independent Living Fund Scotland Recipients Advisory Group
  • Board Member of Inclusion Scotland 
  • Board Member of Capability Scotland
  • Board member of the Institute for Research and Innovation of Social Services
  • Honorary Research Fellow, Glasgow University
  • Fellow of the Centre for Welfare Reform
  • Member of the People-Led Policy Project, which enables disabled people’s involvement in the Scottish Government’s Reform Programme of Adult Social Care