Flexibility and Purpose of Direct Payments
In the past few weeks we have, as a family, had the misfortune of experiencing ill health. Both my daughter and my partner have both needed hospital care at different times, as emergency, unplanned cases.
The timing of my daughter’s latest spell meant that her trip to Rotterdam with her PA had to be cancelled at short notice. This left me with a dilemma. The PA hours had been ‘saved up’ to cover for the additional hours she would be working during this adventure on an overnight cruise, but we were now facing the situation where they were not going to be used. Of course, like every one else in receipt of Direct Payments I had that underlying fear that if the hours were not used the money would be taken back by the LA, and potentially our hours could be reduced in the future as we had ‘managed’ on a reduced number for a few weeks. The PA was keen to help out and obviously had some time available, however, my daughter spent much of her recovery time sleeping, hugging and just generally being quiet and recovering. So I found myself asking the PA to come over when there was very little for her to do, at one point she watched my daughter sleep for over an hour. The two of them are usually out and about shopping, having lunch, bowling and just generally having a good time. There was a part of me that was saying “Is this really the PA’s role?” and then reconciling it with “Of course, the role of the PA is to be a support to the family as well as the disabled person”, especially as far as children’s services are concerned.
After a couple of weeks my daughter had recovered and was almost back to full speed, so she asked when the trip was going to happen. I had to explain that we’ve had to put it on hold for now. So here I am once again, trying to ‘save’ hours for the PA so that the trip can go ahead. I had to use the hours due to the way my LA uses it’s prepaid card and manages our payroll. They would have known that hours had not been worked and requested the money returned, or the PA would have been paid in advance of hours she had yet to work. A fundamental question I’ve had since moving to this LA is where is the flexibility??
Once again, this week I found myself in the position of using the PA and our hours as a support for the family when my partner was admitted to hospital. The PA worked some evenings after school, so I could visit my partner. Again this is an unusual role for our PA and although she was more than happy, and able to be flexible in her working hours it has had a knock on effect on my daughter’s usual activities with the PA. The lack of flexibility within the LA means that there is little ‘wriggle’ room for such events.
I could have contacted the LA when my partner was admitted to hospital and now home and recovering, and request additional hours on a temporary basis to assist us through this time, but my partner is a private man and does not want Social Services to know about his health. The lack of flexibility has meant that overall my daughter has lost out on ‘fun’ activities with her PA.
I’m also thinking about the purpose of the PA my daughter has. I feel recently the assessed hours we receive have not been truly used how the social worker intended, but out of necessity I’ve had to make some challenging decisions.
I know other articles around choice and PA’s have been written for the PA Cafe, and this is my personal take on the impact of the rigidity of some aspects of Direct Payments, and the impact that has on our lives.