Presentation on theme: "Liz Tilly Norah Fry Research Centre University of Bristol ‘The hardest hit’ symposium University of Leeds 20.9.12."— Presentation transcript:
Liz Tilly Norah Fry Research Centre University of Bristol ‘The hardest hit’ symposium University of Leeds
What is Money, Friends and Making Ends Meet Part of an ongoing PhD research project About people with a learning disability who do not get services They ‘slipped through the net’ or don’t meet eligibility criteria 11 people involved initially and 7 now involved in researching their own lives Sandwell, a deprived borough in West Midlands
What are we trying to find out Coping day to day with poverty and learning disability We are researching our lives and experiences Who we have as friends and support (social capital) What does it mean to have the label of learning disability How we manage our money and make ends meet
How we did our research (the methodology) Social model of disability Inclusive research project – ‘with’ not ‘about’ the participants So the participant’s voice can be heard Grounded theory - so the participants can lead on what are the main issues in their lives
Distribution of learning disability
Challenges for coping day to day Executive functioning – planning ahead Attention Speed of information processing Perceptual motor abilities Language skills Numeracy skills
Data collection methods Talking and doing Groups and ‘one to ones’ Sorting out problems together Reflecting together Reflections and observations Audio recordings, transcribed and coded using NVivo
Grounded theory From talking, listening and observing We found that many people have to wash their clothes in the bath as they have no washing machine or think it costs too much to use it. When they break, people cannot afford to repair or replace and furniture charities rarely have them to recycle So their clothes stay dirty and people don’t smell clean and fresh And so they are stigmatised further
Some experiences of the group Low income, budgeting problems and debt Poor social and support networks Poor housing Poor neighbourhoods/ living with anti-social behaviour Reading and writing problems No transport Low self esteem and poor confidence Poor local services Relationship problems Children removed
Fires at home - …Warming a pizza up in a cardboard box in a gas oven - Who? - Our S_ (nephew) - Did…did that catch alight? - Me.. me and S_ (sister in law) had to literally run out the house with a lit box.. - Really! …to put it out…yeah..the fun about it though… our Z …Z (the dog) ate the burnt pizza!
Emerging themes Our identity as people with a learning disability Frequent crises and low points Lack of social capital Unhealthy lifestyles Making ends meet Coping day to day Awareness of rights and ‘is it fair?’ Being part of the research group
Emerging themes compounded problems – communication skills
Text caption goes in here TLike..…….got arrested again last Tuesday LGot arrested again? TFrom the job centre LWhat for TCos I kicked off LFor what..kicked off.. TCos they wouldn’t pay me and they left me..they left me with no money for two weeks Chain of events
Terry’s story Couldn’t read the letter Then lost it Didn’t attend an appointment Benefit suspended for 2 weeks Had no money and had to borrow from friends and family No means to repay ‘kicked off’ at job centre Debts increased
Making ends meet have difficulties with numeracy skills so budgeting is hard live independently exist on low levels of welfare benefits operate solely on a cash budget, withdraw all money in one go have no idea of income or expenditure each fortnight – ‘when its gone its gone’ do not understand credit arrangements and credit costs more vulnerable to loss, theft and extortion
Reality of not budgeting Most people run out of cash 1 to 4 days before their next benefit Usually have food even if just toast Many run out of electric And bills don’t get paid One person with a daughter meant no money for bus so no school
Concessionary Bus pass Disability Living Allowance Incapacity benefit A No (had in past but unable to renew) yes No (had in the past) – Job Seekers Allowance Byes No – Job Seekers Allowance CyesNo – applied and refused Yes but at the end of the project had an assessment for Employment and Support Allowance Dyes No yes E Yes but at the end of the project had an assessment for Employment and Support Allowance F Yes – we applied during the project and this was successful YesNo – Job Seekers Allowance G no No – Job Seekers Allowance Comparison of benefits and concessions received by research group
Common debts Water bills TV licence Gas Most people have had a Provident loan at some time One person was ‘oversold’ a mobile phone contact No TV licence meant those eligible couldn’t have free help with digital switchover
Debts Ranged from £200 to £4400 per person Total of £6000 in the group - including £900 on gas and £1500 social fund BUT no spare cash to repay debts once they build up
Unable to take advantage of ‘economies’ Using Link cash machines Cheque cashing services Paying to pay bills over the counter Using mobile top up rather than a simple contract Paying daily bus tickets Paying bank charges Not buying food in bulk
Ways of managing Borrowing from family Going without Food banks Sikh temple Going to 24 hour Asda at midnight People don’t use the credit union and struggle to understand how it works
Some implication of poverty Social exclusion Limited social capital Lack of personal fulfilment Limited leisure opportunities No treats such as new clothes or haircuts Stress and anxiety
Social capital No access to mainstream services People get support from volunteer run groups mainly churches Friends and family also have a learning disability People’s networks go back to school days So social capital very limited
Strength of social networks People have good social networks but they are also friends and family with a learning disability and so have limited ability to support or knowledge to refer Contacting others can be a problem as no phone credit!
Churches were an essential link Accessible Welcoming Status of belonging Non-judgemental Free to go! Generous But not necessarily experienced in support for debt and benefit issues
Literacy and communication Reading ‘long words’ Writing Making yourself understood about complex issues Articulation- clear speech Understanding complex information Are all a problem to us………..
Communicating with professionals is hard…… Especially at Jobcentre Plus Lack of confidence to go to employment schemes
Why do they keep making us look for jobs when there ain't jobs out there for people like us
Job seeking Proving we are job searching is hard Literacy problems No access to a computer We can’t drive or use a computer – essential skills for a lot of jobs There are no jobs for people like us
Appointments As we can’t read maps it’s hard finding new places, like the employment schemes that Jobcentre Plus send us to. And if we have no money and no bus pass we can’t afford the bus fare so we have to walk or just don’t go.
Only one of us has a calendar, and another has a diary, but this only works if other people write in the appointments. The rest of us just try and remember when appointments are and sometimes we can forget.
Letter invoke panic We find reading and writing very difficult. If we can’t read letters and don’t know what they mean it sometimes makes us panic and get worried. One couple had a letter from Sandwell Homes and thought it meant they were going to be evicted but the letter was only about the gas check.
Tidying up Sometimes when some of us tidy up we just throw all our letters and bills in the bin as we don’t know if they are junk mail or if they are important and we should do something about them.
Poor Health Lifestyle Diet Poverty Compliance with treatments Health awareness Avoidances of medical appointments
Unfulfilled lives Nothing to do Lack of social capital No money Low self esteem Lack of hopes and dreams for the future
Its not fair…… Feeling of powerlessness and frustration – me against the system Not understanding what I have to do to comply Find it hard to see issues from other people’s perspectives Not being able to communicate Managing emotions is hard Can boil over
Agencies who deal with the fall out PCT – GP surgeries, dentists and hospital, including A and E department Social landlords and local authority Housing Benefit team Utility companies and the TV licensing authority Jobcentre Plus and employment schemes Emergency services i.e. Police and fire and rescue Private companies – catalogues and mobile phones Social workers (child care proceedings in the past)
Agencies who provided reactive support in a crises Foodbanks local churches Loaves’n’Fishes who provide furniture and clothes PDSA CAB – less so
A number of private sector companies profited from their poverty and inability to pay through invoking charges and default payments. These included; high street banks cable TV, LINK cash machines, mobile phone companies catalogue companies cheque cashing and cash convertors
The issues people experienced coping day to day could not attributed to their learning disability alone, but the combination of limited social capital and living in poverty. The consequence of this was that the participants developed compounded problems which often snowballed and escalated into wider issues as time went on as the initial issue was not resolved
My thoughts How much time, tenacity, skill and ability to relate and communicate it takes to untangle the problems…………
Proactive and preventative support More cost effective Enables people to live more purposeful lives than lurch from crisis to crisis
What we think would make a difference Communication from agencies and companies in a way people can understand Drop-in services for people to have letters read and to advocate for them Proactive support at home Payment of bills from benefits or even an appointee type service that enabled people to have control Payment of bills that fit in with benefit payment cycles rather than calendar months Support for parents after the removal of a child Fairer concessionary travel pass allocation Disability Living Allowance eligibility to recognise the impact of mild learning disability
Final Report by the Money, Friends and Making Ends Meet Research Group Available from