Yesterday, I was contacted by a long standing member of the Get Steven Home group. She was looking for advice and also asked whether I would write about the latest development in her son’s care package. She was in despair and seriously considering giving up caring for her son at home because financially it has become impossible. She asked to remain anonymous, so I’ll call her Sue and her son, Gary. This week she received two letters from her local authority. The first one, received on Monday, was headed: “Fairer Access to Care Services” and informed her of changes to Gary’s care package, following the “award” of a personal budget. The second letter, three days later, was headed: “Fairer Charging Policy” and informed her that Gary would now be expected to make a financial contribution to the previously free of charge, outreach services. You can probably guess where this story is heading…….
For the past two years, Gary, who is 27, has received a care package of 20 hours per week support. The council have directly commissioned an agency to provide the support, so Sue has never been involved in the finances of the package, although she knows that the agency charge an hourly rate of £17.25 for their services. A total weekly cost of £345. The 20 hour’s support was assessed to cover the following:
* 1 hour of personal care first thing in the morning, five days a week.
* 1 to 1 support to go with Gary to the gym for 1 1/2 hours, twice a week.
* The remaining 10 hours was meant to cover 1 to 1 support to enable Gary to access a college course, 1 1/2 days a week.
One problem that Sue has always had with the current package is that the agency could never find staff willing to work a one hour shift to cover the personal care; they insisted on two hours per day. To meet this demand of the provider, Sue had to use some hours from elsewhere, so it meant that Gary could only attend one of the identified college courses. The bottom line is that the support package was used entirely to meet the agency’s fees; the course fees, gym membership, travel and the support worker’s meals had to come from Sue or Gary’s pocket.
So, where do Gary and Sue stand now? Having been reassesed under the fairer access to care services, the support with personal care has suddenly disappeared off the care plan; the social worker wants Sue to encourage Gary to be more independent (that old chestnut again) and take charge of his own personal care. However, he is still assessed as needing the 1 to 1 support to attend college and the gym and to meet that need, the LA have allocated Gary a personal budget of £136.50 per week. A reduction of £208.50 from the previous budget. Sue is expected to find a provider herself, so if she sticks with the current agency and the staff that Gary is comfortable with, she hs the funds to purchase just 8 hours of support. 20 hours has now been reduced to 8 through a combination of a dodgy reassessment and the unknown algorithm the LA uses for its resource allocation system. What all this means for Gary is that he’ll either have to drop his college course or stop going to the gym; he cannot afford both.
But that’s not the end of it. The second letter informed Sue that under the fairer charging policy, Gary is now expected to pay £38.27 (!) per week towards the cost of his £136.50 per week care package. Sue is dismayed. Where on earth are they going to get this money from? I haven’t mentioned the bedroom tax they’ve had to pay since April because Gary is an adult and not taken into account as part of Sue’s household. The only possible solution is to give up the gym membership (and also save on the travel to the gym). As she is now in a position of being able to afford less care, Sue is now needed at home more to provide the care herself. That means that she will have to give up her job where she works seven hours a week. And Gary will get out of the house for about five hours per week to attend college. Thank goodness though, that all this fairer.
The despicable spin of the “fairer” language leaves the disabled and their carers in a very dark place. The package that Gary was receving has become decimated but apparently was less “fair” than the current package. The implication is that if the new package is “fairer”, he was getting away with something with the previous one. Was it unfair that Gary had a life where he could attend college and the gym twice a week and that Sue could work for 7 hours per week. It must have been because now, they’re being told that their package (life?) is fairer.
How can Sue and Gary be helped? They can appeal. They can ask to go before Panel. They may even be able to challenge this through the courts. Whatever, it all feeds the system even more and the fundamental inhumanity of it all can be glossed over.
It stinks. It’s hateful. And it’s as putrid as unexpectedly finding a pile of vomit on your eiderdown.