The following two scenarios illustrate practical, personal finance issues in the promotion of community inclusion, autonomy and self-determination for adults with intellectual disability.
Gerry (31) lives with his parents and brothers. Each day a minibus takes him to an Activation Unit in the nearby town six, where he enjoys arts and crafts, music and, jigsaws. He has lunch and tea with his colleagues. But Gerry can’t participate outside the Unit with his friends—in ‘community inclusion’ activities like going to the Post Office or bank, or having a light meal in a café. When a social activity requires payment—bowling, swimming or the cinema—he has no money to spend. On his IPP, Gerry has mentioned his ambition to manage his own money with help.
Gerry’s mother collects his Disability Allowance in the local village Post Office. She says she uses the money to buy his food, pay for heating and electricity and to keep him clothed. The family has ‘little enough to go around’, and she doesn’t feel that not having money presents any hardship to Gerry: ‘He doesn’t have the sense to spend it wisely.’
Teresa’s story represents another picture:
Teresa used to live in a large residential centre. Following an IPP meeting, when she was 36, she decided she wanted to move into a flat with her friend Mary. Many people in her life thought this was ridiculous and foolhardy. ‘She would never make it … she’d starve … or worse she’d die of loneliness.’ Despite this, staff members were willing to give Teresa’s hopes a try, and they set up a Supported Living Programme for her.
With help, Teresa and Mary found a beautiful flat. As recipients of the Disability Allowance, they are also entitled to a rent allowance. Their jobs in a contract cleaning work-enclave ‘top up’ their DA to the maximum amount. The Supported Living Programme gives them the help they need in financial planning—to reserve money for expenses such as food and clothes, ESB bills, etc. It’s tight, but they even manage to save a fixed amount each week for holidays. Their lives have been turned around from lives of total dependency, to lives they can truly call their own—albeit with ongoing support. They pay their own way in life. Neither of them needs antidepressant medication any longer.
The vast majority of families provide their member who has an intellectual disability with a high quality of care. Many regard the Disability Allowance as an unofficial payment for care—or a supplement to the insufficient Carer’s Allowance (for the minority of carers who actually receive it)—rather than as a direct allowance to the individual family member with a disability, to keep them above the threshold of poverty.
Some families never give their member with a disability the opportunity to pay for things or to contribute in any equitable way to family finances, with the effect they are deprived of the satisfaction that others get from paying their own way in an adult world. Other families deposit their family member’s Disability Allowance payments into a ‘rainy day or trust fund’. There may be a lack of focused financial planning to ensure maximum return from the saved income, or other state benefits are not applied for—such as rent allowance, travel/companion pass, etc.
There are many other ways in which people with intellectual disabilities are held ‘at arm’s length’ from having a say in their own financial affairs. A person may live in a large residential centre, with little opportunity to do everyday things like shopping or going out for a coffee or a pint. What happens to the DA for the relatively privileged individuals who reside in community ‘group’ homes? Invariably, the nurse or carer in charge collects the DA from the post office for all the residents, and makes the weekly deductions on their behalf. While such practices are well intentioned and ‘efficient’—how can individuals learn to exercise their own preferences if they lack the experience of ‘hands-on’ daily financial management?
Do you have life insurance? How many people with intellectual disability do you know with a life insurance policy? No one? Does this say that their lives have no financial value? Do you have a credit card? Do you know anyone with ID who has one? Can’t we trust them? Do you have investments, property, or loans? Do you know any person with intellectual disability who has ever talked with a building society or a financial management service?
How far have we really moved from previous service models that had their origins in the perception of the service user as an object of charity? Even the word ‘handicapped’ implies the ‘cap-in-hand’ of the beggar in the street. If we fail to promote financial self-determination as fully as possible, have we really gone very far from that way of thinking?
If we are serious about promoting equality, improvement and self-determination, we still have a lot of work to do in these areas to improve independence in personal financial management for people with intellectual disabilities. Once again, we need to challenge our practices with the people with whom we work.