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Keeping Christine independent - support and personal care
#15 (In Topic #14)
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admin2 in the usergroup ‘Administrators’

Support and personal care

Although it was a slow process, by around 1996 Christine had lost the capacity to do anything for herself that required physical movement.  So eating, washing, bathing, dressing, controlling her power wheelchair etc required assistance, as did activities like transferring from one chair to another, or from wheelchair to bed.  From this point onwards, Christine required 24-hour care.

24 hour care is not something that can realistically be provided by one partner or parent.  Additional support is essential and was crucial in maintaining the level of independence that Christine sought.

For those who qualify, a personal care package can be funded either through social services, or through the NHS in the form of Continuing Healthcare.  Funding through Social Services will make the recipient (dependent on income) subject to whatever charging policy applies in that particular local authority.  Continuing Healthcare is funded by the NHS and is therefore not subject to charging.  However, our experience is that it is extremely difficult to show that an individual meets the criteria and will only be available if needs are assessed as 'severe' or 'priority' (meaning that there would be a severe risk to life if the relevant level of care was not provided).  Most local authority social services departments now only provide care for individuals whose needs are assessed as 'severe' or 'critical'.

Although Christine was entirely quadriplegic with no independent movement whatsoever, it still took nearly 3 years of constant battling before she was finally assessed as qualifying for continuing healthcare.  Sadly, Christine only received the confirmation letter the week before she died, so it was never paid.

I don't remember exactly when Christine received her first full needs assessment from social services but I have to say that, in Sheffield at least, the level of support provided was generally appropriate to Christine's needs and increased over time as her physical capability decreased.  And it's only fair to note that the criteria were probably a lot more flexible 10 or 20 years ago than they are today.

It helped that Christine was able to pioneer one of the first direct payment packages in Sheffield (employing her own PAs was always a priority for her).  Ultimately she employed three PAs (one full-time who stayed with her for more than 17 years, and two part-time) which, with input from myself, provided the 24-hour care which was essential for her independence and safety.  Direct payments and personal budgets are now considered the preferred way of delivering care, and it's certainly gives the disabled person the maximum degree of control.  As an employer Christine chose to operate her own payroll, although this is not essential as the responsibility can be outsourced.  Most local authorities will have a scheme in place.  

The right level and type of personal assistance is the second element that allowed Christine to continue to work and to maintain her independence.  Her personal assistants were always called PAs because they did a lot more than just provide personal care.  For instance driving her to meetings, sometimes a considerable distance from Sheffield, sitting with her at meetings, ensuring that the right papers were in front of her at any given time, and also some secretarial duties and computer work when Christine was at home preparing or following up a meeting.  Christine could mainly do all her own computing as I will be explaining in a later episode of this blog.  PAs would also take Christine to social events, meals out with friends or the theatre, for example.

As the package was provided by Social Services Christine was subject to whatever charging policy applied at the time, but in reality the money provided came fairly close to covering the full cost of employing her PAs.  As noted above, towards the end of her life she fought a three-year battle with the NHS for fully funded continuing healthcare.  Sadly, this was never paid as it was only confirmed that she had finally won the battle the week before she died.

Cost to ourselves - probably around £5,000 in charges over a ten-year period (there would be no charge to those on lower incomes)

Last edit: by admin2
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I was very interested in your article in New Pathways.  I have one query.  You obviously had savings with which you bought Christine's better than NHS Aids. How were you still able to get Direct Payments?  My husband/carer has just died and our income fallen drastically. We have savings but I need them for my replacement aids and to pay the rent for the rest of my life.  I wondered what was the best way to go about requesting Direct Payments (Agency carers are so unsatisfactory and frustrating) when the social worker comes on Monday.

Thanks for any advice you can give.
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admin2 in the usergroup ‘Administrators’

Hi Jean

Thanks for your comment.  We did use quite a bit of our own savings and income to help Christine remain independent but as far as I recall, in Sheffield at least, savings and income didn't affect the assessment for a direct payment.  If you met the criteria (critical or substantial need), then the payment was based on the number of hours care that you were assessed as needing.  Everyone was assessed on this basis regardless of income or savings.

However, if your savings were above a minimum amount then you had to pay a charge which for the wealthiest would cancel out the value of the payment.  Bizarrely, I think pensions were included in this calculation, but not salary or income from work!  

Although Christine did have to pay a charge, her direct payment did still cover most of the salaries for her personal assistants.  She employed these directly and we only used agencies occasionally.

Hope this helps.


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