Just a little thought. After the bizarre experience of the housing benefit tribunal.
It seems like the State likes to have its cake and eat it. And that can’t be good for it surely – it’ll get terribly porky.
In the world of Housing Benefit, it is seen that Steven is NOT a member of my family. The father and son relationship means absolutely nothing. His disability means nothing. The idea of any form of dependency between a father and an adult learning disabled son means nothing. Who am I?
In the world of housing homeless applications, there is no acknowledgement of the family relationship between me and Steven. No mention of son and father. I’m in the box “live in carer”. Is that who I am?
In the world of social care, families of learning disabled adults don’t exist. We are rarely consulted. We are rarely informed. Yet at the same time, we are expected to provide all the care.
Odd one. On the one hand the State likes to see our learning disabled adults as totally autonomous of their families. Yet at the same time, it assumes that we anonymous people will provide round the clock care for nothing.
Here’s my little thought – what would happen if the “live in carers” (Mums, Dads etc) suddenly approached their adult social care providers and demanded that they go on the direct payment payroll. After all, in the eyes of the State, there is no difference between the family and the carers paid for via an agency or through direct payments.
It’s worth a try.
Love, Belief and Balls 
The forms appear to be drafted by complete imbeciles. They have no idea of the real world so by logic must be aliens from another planet!!!
Many people use direct payments to employ family but they must be living elsewhere ie they must not be living with the person buying the service. In Steven’s case it would mean that you would have to live somewhere else and the council would have to pay more for his care (24/7 support as opposed to the paltry few hours the council funds now). You can choose the number of hours you do every month and work out a rota for that with Steven’s other support workers. It also means you can keep your other job as a therapist.
Another thing, the council should be funding the payroll service separately (we pay about £15pm but it does not come out of the DP). It is a huge relief to have an agency work out wages, tax etc. All I have to do is ping off an email to payroll by the middle of the month with the hours for each support worker and transfer the money from the DP account into their accounts on payday.
Finally, I would have no compunction about putting that stuff on the balcony – sounds like its only fit for a skip anyway. Perhaps someone has a tarpaulin to cover it or you could use the wrapping from the new furniture to protect the old stuff.
As a support worker who supports adults with learning disabilities to live independently in the community, most of whom have no family or their family are far away or estranged, I think your idea is a good one. I don’t know how practical it would be as I don’t think enough parent or familial carers could bring themselves to effectively walk away from the day to day care they do. I do believe you and all the other carers in your position should be paid a wage for the job they do. In my role I spend a.few hours a day with each of my clients and I enjoy the variety in both the issues and personalities I encounter but I do get to go home each night and relax. I can only imagine and empathise with you and all those in your position, the daily grinding down of hope and growing frustration when on top.of dealing with a demanding and exhausting adult child, finding those you would expect to turn to for support are the very people making life harder.
You appear to me Mark, to be a devoted father and a caring husband who the powers that be should thank profusely for saving them many thousands of pounds in community care costs. The least they should do is.ensure you have a suitable environment for you to do what you do.
Weary mother
This morning’s blog is as usual spot on. All your blogs reflect our (family carers) lives and you speak up so bravely for us all.
Thank you.
This is exactly how I felt over the last few years. It’s as if I never existed and even though I looked after my daughter for 41 years our relationship and my opinion didn’t appear to count. It makes you feel so isolated, alone and all hope is taken away. What form will Steven’s foundation take? – you do speak up bravely for us all…..
Dear Mark, I was thinking:in the novel “The Women’s room” the wife in a divorcing couple presents her husband with an itemised bill-he having dismissed her contribution to everything over the years as without value. Your idea is an excellent one. What a wonderful test case this would make.
The assumption is always that the unpaid family will provide all the care and do the incredible amount of admin work and extra care left by the closure of community services.As you so truly say, we have no power and no standing. Time for a group gesture?
As you say, who we are depends on what suits the State. I once had a bizarre conversation with a High Up who explained that Councils only have to provide for “unmet needs” – while knowing quite well that as parents we won’t let needs go unmet. You can be a live-in carer if it saves money, but become a relative it seems when it comes to the bedroom tax and housing benefit. A paid carer who has attended two training sessions is an Authority, we don’t know anything and are not to be trusted. Direct Payments and personal budgets get reduced because we provide unpaid care – and then we get stuck with the extra work of doing the admin, while being subjected to a level of oversight that didn’t exist when paid workers did it!
Kafka would have felt quite at home in our world.
It does not just apply to families of adults who are learning disabled. Even adult children who care significantly for an elderly parent(s) are seen in exactly the same way.
At one end they have the status of family carer, at the other they can be made homeless if they move in to live with parents to care for them should a social worker wish to put said parent(s) in residential care to release the money in the parent’s owned property to pay for care. Then the state does not have to provide the formal care to support the informal carer to keep relative at home.
Even the judges in the CoP can be hoodwinked to thinking the social worker is acting in the parent(s) best interests, after all they give rather a lot of weight to a group of persons whose education, skills and knowledge base are not the highest in the land.
That social services departments frequently flout laws and avoid scrutiny, because they are not pubkicly accountable, goes unoticed.
So we have double speak- family care is important and family do not exist as the adult is a separate indidvual who can freely be manipulated by the state apparatchik, when its suits them.