Funding my daughter's care

[Mumof3girls]

My daughter (aged 34) has been in residential care for just over 11 years. Her care package is jointly funded by the local authority and the NHS. She is in receipt of ESA and the mobility component of DLA. This is her only income. From this, the local authority takes back just over £91 a week. The whole of the DLA mobility component goes towards the running costs, maintenance and insurance of a wheelchair accessible vehicle which the care staff use to take her to her various activities and appointments, and in which we take her to church and home to visit the family every weekend. However, she also goes to a day service on two days a week, without which she would certainly not make the progress or find the fulfilment in life that she currently enjoys. The care home pays the greater part of this, but because the local authority and NHS refuse to make any contribution, she has to make up the shortfall out of her benefits. After using the DLA for her transport needs and paying the £91+ a week to the local authority, she is left with around £34 a week, but the day service costs her around £60 a week, meaning that she is running at a deficit of roughly £26 a week. She had run up a debt of over £1000 to the day service, but then a relative died and left her a sum which enabled her to clear this debt and have a small amount left over for savings. This amount will soon all be gone and she can’t go on indefinitely running up debts to the charity that runs the day service, nor can I as a widow on a low income afford to make up the shortfall for her. Is there any way the local authority could be persuaded to reduce the weekly amount she pays them, since they have refused to contribute towards the day service? Or are there any other benefits she could be claiming to help with this cost?

[anne.t]

The local authority have the discretion to allow more personal expenses allowance which would mean she was paying less to the LA. See Disability rights handbook chapter 36 para 10. However I have never heard of this being done. My son attends a day centre run by the local authority for one day a week and he is not charged for this. If it was me I would argue that the day centre should be part of the care planand the cost included in the package. It might be useful to say that attending the day centre is a “psychological need”

[Mumof3girls]

The LA’s view is that the Care company should provide this as part of their care package. To begin with they did provide 100% of it. But it became very apparent that attending the (charity-run) day service once a week was just not enough to meet her needs. So she now goes twice a week, and although the care company pays some towards the extra day, they actually pay 4/5 of her total attendance and the LA refuses to pick up the tab for the other 1/5, so she has to pay it herself. We have a copy of the Disability Rights Handbook at work so I will look up that chapter when I’m next in the office, thank you.

[VK3QQ]

Gosh! This overrun cost is shocking! … We have just learned the meaning of DLA (PIP) and ESA, We are learning the UK system slowly.

Here in SE Australia, our youngest (40) is in a similar situation since we reluctantly decided we we getting no younger to provide 24/7 care. But he is with us as often as possible.

He is in an active-night group home and attends a day service 5 days per week, 6 hrs per day. With transport provided free by the group home

All support services are full paid, at present by the state government, but soon by Federal. And, he gets a full disability support pension, as do all people with disabilities.

We are happy to supply the figures in UK pounds if anyone is interesting in comparisons

Tony & Heather Tregale
wwwlisainccomau