Frame Relay.

The majority of parent/caregivers (72.2%; n=13) felt that having a child with disabilities affected their family financially. Only three (15%) were in full-time employment; three (15%) were employed part-time; three (15%) were retired; two (10%) were students; and nine (45%) were unemployed. All of the sons/daughters were in receipt of Disability Living Allowance (DLA), 15 (79%) received both care and mobility components and four received DLA care component only, although applying for this benefit was seen as difficult or confusing by seven parent/caregivers (39%), who needed help filling in the forms.

Then, you had to fill in his form every three years and it’s like an

encyclopaedia, filling in those forms, they’re desperate so I sent it up to get it signed and [the GP] signed it and filled it up for me so I said, it’s not for me, would you fill in the form for [name] and he said. ‘How often do you fill this in?’ and I said, ‘Every three years’, ‘Huh, we’ll see about that’. So he sent away the thing, and filled in whatever he had to fill in and must have sent a letter with it and I got a letter saying I would not have to be filling in any more forms. He has got it indefinitely which helps because those forms, it’s a

curse.(Carer 10)

We actually got help at the end after a vast struggle with DSS, one of their officers came to the house and filled in the forms for us, which was very nice

but that took a wrangling of about six months, because our benefits were stopped without telling us, that was about 4- 5 yrs ago, and after numerous

phone calls they came to the house and filled in the forms.(Carer 13)

It was particularly difficult for parent/caregivers who worked irregular part-time hours or who had more complex caring situations.


I did have problems as I work part-time, with no set hours and how you inform them of your work, sometimes quarterly, or over a year, changes from year to year depending on adjudication. If you work for three months they will close it and you will have to re-apply and the paperwork, five full pages, makes it that you go ‘Why would I even bother working with the grief this

causes you?’ (Carer 3)

Only 11 (61%) respondents received Carer’s Allowance, which depends on parental circumstances. Carer’s Allowance is means tested and age related, and requires an application that is separate from DLA, which relates to the circumstance of the dependant.

They take [Carer’s Allowance] off you when you are 60. They give you a supplement now when you get to 60. It’s half of the Carer’s Allowance. So the day I was 59, I got Carer’s Allowance, and the day I was 60 I didn’t, for the

same job. (Carer 18)

Lack of awareness of benefits was a problem for some of the carers who only learned about Carer’s Allowance several years after they had been awarded DLA.

I only found out about that recently, I just assumed you’d have been told

about that at the same time as Disability [Living Allowance]. (Carer 14)

Some of the participants were not aware of the difference between DLA and Carer’s Allowance. The letter parents receive regarding DLA was viewed as unclear and confusing with regard to whose circumstances are assessed, caregiver or dependant (for an example of such a letter, see Appendix 3). Four families (22.2%) received direct payments3 _{to provide services and for them, this allowed flexibility in the type} and duration of support.

3_{‘Direct payments are local Trust payments available for anyone who has been assessed as needing} help from social services. Caregivers aged 16 or over can apply’. See the website

http://www.nidirect.gov.uk/index/information-and-services/caring-for-someone/money-matters/direct- payments-for-carers.htm

This pays for a ‘personal assistant’ for [name]. The only problem is the financial paperwork. The flexibility gives me a life; I’m in charge instead of at the behest of a domiciliary service who ring at the last minute. I can ‘bank’ hours so I can use them in a crisis. When I had surgery, I had someone 24/7. There’s no way you’d have had that within the old system of domiciliary care!

(Carer 3)

However, direct payments can be difficult to administer and manage especially for parent/caregivers with few community networks or with dependants who exhibit challenging behaviour:

Some people don’t like that because you have to keep the books on it and they would take tax off the other person. I tried to talk to my wife, we are not getting any younger and starting to do all this housework ourselves. I had said to the wife that we would even try and get someone in for a few hours a week to do the dusting and the wife wouldn’t have it, but there might come a time

when we might have to do this. (Carer 11)

Five families reported that their children received other benefits. Three received Incapacity Benefit4, one was in receipt of a yearly grant from a national family support charity and one received Access to Work 5benefit.

Two-thirds of families (n=12) reported worrying about their financial situation more than occasionally, with more than a quarter of these (27.8%, n=5) worrying

constantly. Of those who reported worrying about finances all the time, four were married couples with children under 18 years of age, where at least one of the partners was unemployed. The fifth carer was a single parent who was working full-time, but whose job was intermittently part-time.

Having been a family carer for 29 years, caring for five family members, I learnt to reduce the stress of financial worry by saving on a regular basis,

4 _{Incapacity Benefit is paid to those unable to work because of illness or disability (before 31 January}

2011). See

http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Illorinjured/ DG_10018913

5_{‘Access to Work (NI) is available to overcome the practical problems caused by disability. It offers}

advice and help in a flexible way that can be tailored to suit the needs of an individual in a particular job, or getting to and from work’. See: http://www.nidirect.gov.uk/index/information-and-

taking limited family holidays. There were terrible pressures when [name of ex-husband] became brain injured and no salary coming in. We claimed every benefit, shopped for food at its sell by date and in charity shops. We made major savings all the time. That’s the unpredictability of [mental health] disability. You go from one person earning to a position where there is no money coming in and benefits change. You’re in the deep end, with no control. I have put money away to maintain stability, if [name of son] wasn’t able to earn, or if I got ill, that we can survive. I’m future-proofing the mental

health of my family.(Carer 3)