Learning Disability Today
Supporting professionals working in learning disability and autism services

Making ends meet

moneyFor people with learning disabilities who do not receive support services, living a life on benefits can be a struggle, as a research project found out:

For Joe [not his real name] the struggle of living on welfare benefits was epitomised by one occasion when, having run out of money, he resorted to stealing toilet paper from a bingo hall. Joe, who has a learning disability and receives no specialist support, had received food from a foodbank but had run out of other essentials, hence his theft.

While this may have been an extreme example, Joe’s struggles are by no means unique, as the Money, Friends and Making Ends Meet project found. This was an inclusive research project that explored the lives of a group of people with a learning disability who do not receive specialist support services. It focused on the strategies they used to cope with day-to-day living, their experiences of poverty, and the support they received from their social networks and social capital.

The research involved a series of 10 focus groups, unstructured interviews and action research where problems were sorted out together to understand the issues that caused them. Money was an area the research group was keen to talk about. They recognised a lack of money and poverty was a dominant theme in their daily lives.

Living on benefits
Like most people with a learning disability, the research group existed on welfare benefits. Their lives revolved around the cycle of signing on and subsequent benefit payment dates, as this income was pivotal to everything they did, such as being able to travel, buy food and have phone credit.

The entire group considered their benefit income to be insufficient for their needs and wanted a higher amount. As one member put it: “We all have [money management problems] ‘cos they don’t give us enough to live on.”

But the group were confused over the amounts they were paid and the names of their benefits, and tended to overestimate them. For example, one person thought her disability living allowance (DLA) was £100 higher than the actual amount. There was a huge discrepancy between the group members’ eligibility to receive DLA, despite seemingly having similar abilities in coping day-to-day. Only half the group received this benefit, most having the lower rate of £18 a week.

This was referred to as their ‘Blackpool money’ and was a highlight because it enabled them to ‘splash out’ on things they could not afford from their fortnightly income, such as paying a larger bill or having a haircut. One person received £283 DLA every four weeks, but subsequently lost it all following a re-assessment towards the end of the project. This happened at the same time she lost her employment and support allowance, causing extreme financial hardship as these benefits represented about 20% of her income. Months later she lost a further £20 a week child benefit when her daughter turned 16. She spoke of having no support to help her to re-budget to make allowances for this drop in income, so was left to muddle through with insufficient money for essentials.

During a three-year period, her monthly benefit income ranged from £574 to £1,237, making budgeting nigh on impossible, as her pattern was to spend the full amount received in any month, so there were never reserves to fall back on. There were many reasons for these variances; sometimes two four-weekly DLA payments fell within one calendar month, and at other points money was stopped a consequence of not producing a doctor’s note.

Another group member made a claim for DLA in 2003, which she received until 2006. She was not aware that it had been stopped until it came to light during the research project. As part of the action research it was found that in 2006 her low-level support was terminated so she had no one to read and support her to act upon a letter to confirm she was still eligible for the benefit. A fresh application was made and the benefit was reinstated, but she was not able to receive back payment for the money she missed out on – an estimated £4,600.

It was also noted how having DLA ‘passports’ claimants to other concessions, for example, a free cinema pass for a supporter or cold weather payments. There also seemed to be some evidence that you were more likely to be awarded a concessionary bus pass if you had DLA. So for many people having the identity of a person with a learning disability brought material benefits.

Managing on a low income

The group found budgeting very difficult. They tended to muddle through, hoping their money would last, with the reassurance of receiving regular income from their benefits. Typically, they withdrew all of their benefit on the day it was paid in, and paid their bills in cash, although some gave part of it to their mothers or to a non-disabled friend to keep for later in the fortnight.

Having benefit money on either a two-week or four-week cycle meant they could not set up direct debits, as companies want payment on a calendar month cycle, which is not compatible when people have no cash reserves.

Group members regularly had cash flow crises before their next benefit payment came, and resorted to borrowing from others and using pawnbrokers. Some used the alternative credit market, which contributed to spiralling debt. Others had also been financially abused by friends, family and neighbours, which caused more debts.

The group had many strategies for managing when they had no money. This included walking rather than taking the bus, having meals at their mother’s house or at the Sikh temple. Most of the group regularly used local foodbanks, or received donations of food from churches. When money was short most ensured they had bread and milk so they could survive on tea and toast.

Getting into debt
For this group it seemed their debts largely arose as their regular outgoings were more than their benefit income, and they lacked the strategic planning skills to manage their money to minimise their expenditure.

Once people got into debt they found it was almost impossible to clear because they never had any additional income and struggled to make the benefit payment last for a fortnight, so there was never spare money to repay loans. Some could not afford to make the payments. As a result, they found debts often never went down as they were paying administrative charges for when they had been unable to make payments.

All of the group had several debts. One person got into debt through being oversold a mobile phone contract, others with having high credit loans and through buying essentials from catalogues. Many also had been in debt with gas bills when they had paid quarterly and were now paying this back through payment meters, which meant it was very expensive to heat their homes.

Those that were in debt to credit companies reported being constantly hassled by phone calls and formal letters with a threatening tone, which frightened some. As a result, one group member stopped answering her phone for a time, which meant no one could call her.

Debts gave people more stress and worry, adding to their difficulties in coping day-to-day.

The implications
The complexity of benefit payments was interwoven with a fundamental difficulty in understanding income and expenditure amounts, and lack of ability to develop and keep to a budget, which is essential when resources are finite. The less income one has, the higher the level of skill required to manage it, so it was not surprising that the group struggled.

In addition, the groups’ experience of poverty reduced their opportunities to connect locally and build relationships with people who could support them, which increased the challenges of living with a learning disability without support.

It is ironic that in order to obtain disability-related benefits and increase the level of income, claimants have to stress in their application their personal limitations and difficulties. This is in opposition to how people would like to describe themselves – as being capable and competent – and how current thinking about people with a learning disability portrays them as an ‘equal citizen’ who may need additional support with some things.

The group were aware of the upcoming introduction of universal credit and of the personal independence payment to replace DLA, including the move to monthly payments. Indeed, this may help in some ways as some outgoings can then be paid by direct debit.

But the big question is who will help this vulnerable group who live without support to make the transition to receiving money on a monthly basis and to budget over a longer time when they struggle on a two weekly basis?

Financial and social exclusion affects the most vulnerable people in our society, and this research found it particularly affects those with a learning disability who live without support. The group are continuing to meet to research the impact of the on-going welfare reforms on their lives.

The research group wrote their own report, ‘Money, Friends and Making Ends Meet’. It can be obtained as a pdf from [email protected]. The research project is on-going.

About the author – Liz Tilly is a director of Building Bridges Training, who co-trains with people with a learning disability and is also a freelance trainer.

This article first appeared in the January/February 2014 issue of Learning Disability Today. For more information on the magazine and how to subscribe, go to: http://www.learningdisabilitytoday.co.uk/learning-disability-today/

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