In this section you will hear from Enid; a mother and carer of two autistic adult sons.
Enid talks about her worries and hopes for her sons.
She discusses the different benefits she is entitled to and her fears for the future.
Enid Francis lived in a modern residential area on the outskirts of Derby.
She shared a house with her husband, Wally, and two grown-up sons, Mark and John.
Her husband had had to give up work eighteen months before his retirement, because of a heart complaint.
Their two sons, aged 35 and 32, were both autistic.
Enid's day was organized around meeting their needs for care and support.
On weekdays, they attended a day centre, which she would have to get them ready for.
When they came home in the evening, she showered them, got them into clean clothes and prepared their tea.
If it was fine, they would go for a walk, or a drive.
With her husband at home, she had more help than she had had before.
However, without his wage coming in, she worried about how they would fare financially.
Social Services paid for someone to come in for an hour-and-a-half a week, to help with ironing.
That was all the help she got with care at home.
At first, she didn't have to pay for this service, but recent changes in local charging policy meant that she then had to pay the minimum charge.
The family were also assessed by a community nurse, and this led to their getting a shower room.
Enid and her husband were born in Jamaica.
Her first job was in a weaving factory.
Later she worked as a nursing assistant at a mental hospital.
After her sister returned to Jamaica, the family had to rely on Wally's relations for support.
She appreciated their help, as well as the support she got from two close friends.
Her two sons, Mark and John, got Income Support, Disability Living Allowance and Attendance Allowance.
On this basis, Enid received an Invalid Care Allowance.
She worried about what would happen when she turned 60 and was no longer eligible for ICA.
She talks about the costs of care, but also about her commitment to her sons.
At times, she had applied for Mark and John go into residential care on a respite basis.
She paid £52 a week for each place.
Enid was cynical about Social Services and social workers.
She would only ask for help if she was desperate.
As she saw it, people like her didn't get help, because she managed to have a ‘decent home’.
Enid had been involved in carers' groups over the years and went on to help in the launch of a Caribbean Association of Carers.
She's found out that people didn't know what they were entitled to, so one of the things she did was to help other people claim the benefits and allowances due to them.
Enid contrasted her situation with that of other people she knows, who have put their children into residential care and returned to work, earning salaries and providing for their old age. As she says:
"They're my children, and it's my duty to look after them. At the end of the day, I've saved the government … I'm going to say, pretty near a million pounds".
Listen to the audio clip. As Enid describes how her life has changed since her sons were born.
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