Meet the Team - Anne Pridmore

 Anne ( Being the Boss) is one of our amazing  leading members of The Care Net, she recently did a talk for Center of Care. This is a copy of her talk. 

It gives an insightful view to authorties and organisations on what it feels like to be Direct Payment Holder.

Centre for Care Loughborough Presentation

I have called this presentation Dancing Naked on the Beach and hopefully the reason will become clear during my talk. I will leave time at the end for your questions.

I have been disabled from birth but went to mainstream school from five years of age. At 14 my parents paid for me to go to business college where I studied shorthand and typing. All the other students were promised a job on completion but no such promise was made to me. I very soon learnt that if I divulged I was disabled in an application I would never get a reply let alone an interview. I decided to never disclose this in order to get a job. I started work at 15 and worked for 25 years in various boring office jobs which never stretched my ability.

My introduction to social care began 1986 when my partner of 20 years decided to leave. Three days before he went someone from Leicestershire County Council phoned me to tell me they didn’t know what to do with me. It was a very frightening time for me and it was at this period of my life I understood what I was up against. When I’m asked to do presentations I often quote this – 24% of the population are disabled – this adds up to15million people and 76% of these people were not born disabled. Disability can happen to anybody. However I have to admit that even though was born disabled I never envisioned the struggle ahead of me to get any quality of life.

I was allocated three calls a day and a bath nurse on a Monday because every bank holiday falls on a Monday this could mean going without a bath for three weeks until the bath nurse caught up with the list. I was 44 years of age but could be put to bed anytime between 6.30 and midnight.

 It was about this time I was introduced to disability politics and I became the chair of FAIRDEAL a disabled people’s user led organisation. With the support of FAIRDEAL’s manager I decided to write to the Director of social services and told him the statutory services he was providing me with were shit and I wanted to swop them for cash. It took me two years to get this agreed but this resulted in 36 disabled people in LCC getting money from the Independent Living Project as it was called. It was also around this time LCC invited me to be their strategy committee where I went to the Kings Fund and met Baroness Campbell - who introduced me to the Independent Living fund which changed my life as this meant I had money from the Independent Living fund to add to my social care budget. I still only received about 60 hrs a week so there were no spare hours to get out of the house. At this time Local Authorities were not allowed to pay money into an individual’s bank account – disabled people fought to get this altered and this gave rise to the Direct Payments Act but this turned out not to be the utopia we had hoped for – as it created a lot of well paid jobs within Local Authorities which would have funded more social care packages.

From 1986 to 2010 I chaired both local and national organisations including becoming Chair of UK Disability Forum for Europe in 2005. This took me all over Europe every three months where I proudly spoke about Independent Living in many countries including speaking in the Brussels Parliament and Strasbourg. I was part of the European network of Independent Living and at this time UK led the way.

In the early 90’s we had lots DPULO’s to support disabled people and it was around this time I started my charity Being the Boss because most disabled people have never been employed themselves let alone been an employer and all that entails. We are expected to do the same work as an H R Department, Finance Department, a Mid level manager, a legal team, health and safety officer, pay role manager and a training officer – whilst trying to have a life – and more importantly we do it all for free! For many disabled people this feels as scary as dancing naked on the beach.

My support package is funded by Continuing Health Care and the local authority and it enables me to employ five Personal Assistants who work 24 hr shifts. Recruitment is at an all-time low with wages either minimum wage or just above. A factor that I have never understood is that when a disabled person chooses to have agency care it can costs more than double. A friend of mine who has a Personal Health Budget and has great difficulty in recruiting new staff. However was informed that for the hours he cannot fill they would pay £30 an hr. But refuse to pay more than minimum wage for the staff he employs. When you consider that many of our PAs have a job description longer than the CEO of BT wage does not reflect this. It hasn’t been an easy ride and whilst my impairment will never change my package has to be reviewed each year. Each year at review you are faced with a social worker who knows nothing about you and whom I’ve never met before. Many people who have a support package live in fear of cuts to their funding.

What does the current climate look like for social care?

At the house of lords three weeks ago I had to listen to Stephen Kinnock MP talking about how they had no intention of increasing the social care budget.

The system is broken – with hundreds of disabled people having to give up their support packages. Why you might think, this is solely due to charging policies. If you are in receipt social care from your local authority and are in paid work you don’t pay. This is exactly the same if your funding comes from continuing health care. However if you retired or because of your impairment you are charged. Every year these charges are increased. The MIG or minimum income guarantee is the amount you are allowed to keep before being charged. For the current tax year a person in receipt of state pension the amount they are allowed to keep before being charged is £228.70 per week.

SCOPE the charity did a research on the extra cost incurred when your disabled. Their analysis shows:

• On average, disabled households need an additional £1,010 a month to have the same standard of living as non-disabled households.

• On average, the extra cost of disability is equivalent to 67% of household income after housing costs.

•

The Disability Price Tag is based on the most recently available data at the time of analysis (which was from 2022 to 2023). If we adjust the figure to understand what it might look like in 2024, these extra costs go up to £1,067 a month

So what does the future look like for disabled people – or for that matter any of you here today – unless we get a commitment from government to properly fund social care it looks very bleak.

Anne Pridmore

Director of Being the Boss

www.beingtheboss.co.uk

reply to mail@beingtheboss.co.uk

Anne also has a fabulous book available on Amazon giving an insightful  look of her life with disabilites 

https://amzn.eu/d/3D6tHSi

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