SDS payment Guidance

Legislation & Guidance
1

I’m looking for advice and guidance regarding Self-Directed Support (SDS) funding in Scotland.

My mother is in the advanced stages of Parkinson’s disease and now requires full 24/7 care. She is completely dependent and cannot take even a single step on her own. She needs hands-on support with everything

— toileting, feeding, washing, dressing, repositioning, getting in and out of bed, and constant supervision due to high fall risk.

There are times when she suddenly loses all strength in her legs without warning. In those moments, it is impossible for one person to manage her safely. We have literally had to lift her in order to move her or help her walk. It takes at least two people during these episodes to prevent injury to her or to ourselves.

Currently, four of us are sharing round-the-clock care. The SDS payment we receive is £3,000, and it is nowhere near enough to cover the level of care she requires. The physical and emotional toll on us is becoming overwhelming, and the situation feels unsustainable.

I would really appreciate guidance on:

Has anyone successfully requested a significant increase in SDS funding for advanced neurological conditions?

What evidence helped your reassessment?

Is there a typical funding level in Scotland for someone requiring full 24-hour care?

Would this level of need qualify for additional funding streams (e.g. CHC/NHS support)?

Any tips for strengthening a reassessment request?

We want to keep her safe and cared for at home with dignity, but without proper financial support, we are struggling.

Any advice or shared experiences would be hugely appreciated.

2

Hi @Rauf007

Is the £3000 a monthly amount and what does it currently pay for/where are the gaps?

Do you and any other unpaid carer receive any support for respite?

It might be worth saying which Local Authority area you are in, as what can be expected can vary quite significantly between them, including how funding is allocated, and the best advice will be from someone with direct experience.

I would also recommend you speak to your local SDS and/or carers organisation, if you haven’t done this already: Find Help - Self Directed Support Scotland

Justin

3

£3000 a month is total amount we get for caring for her. Basically there is 1 carer beside her 24/7. We cant leave her alone and sometimes we need two people to carry herbto the toilet when she is having episodes. I feel £3000 is far below living standard for 4 carers a month.

And none of the carer gets respites. I dont even know what that is

We are in Renfrrwshire Council area

Appreciate your feedback. We are all struggling a lot.

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It would definitely be worth contacting Renfrewshire Carers Centre, if you are not already in touch with them. They can offer advice on a range of things, including social care/SDS and breaks from caring: Adult Services - Renfrewshire Carers Centre

1 Like
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I’m in exactly the same position with my husband and have been in dispute with South Lanarkshire council for more than a year It would take pages to tell the whole story so I’ll condense it

No assessment or budget increase for more than 4 years Used contingency to fund extra care hours as condition progressed on advice of SDS support project No budget overspend all employer responsibility met

Accused of misspend

Budget cap of £691 imposed Should care needs exceed this figure Options are

Privately fund anything over the cap

Reduce core PA hours

Residential care

Impossible to recruit second PA to cover day off holiday sickness as maximum hourly rate imposed at £12.60 So forced to use companies who charge at least £12 per hr more Therefore depleting budget

Options

Top up PA salary from private funds

Increase unpaid carer hours

Again accused of misspend

Had a stroke in August last year family insisted on me taking a break extra care cost £700 to cover my absence SLC billed me for the care threatened to ‘review’ my SDS option 1

Again accused of misspend

Been through the complaints procedure which did not follow procedure Now at ombudsman stage

It will be interesting to see if your LA imposes a cap

Have spoken to my MSP re the implementation of SDS across the country and asked if it can be raised in the Scottish Parliament

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I can fully understand your situation. We are struggling just now with same limitations. Right now 3 sisters and 1 daughter in law having to care round the clock for my mum. Because allowance allocated we can’t afford outside help. You are taking the right stepps please let me know the outcome from Ombudsman or any other stepps you have taken.

Appreciate your feedback. And hope you get a relief

7

Thank you
Just about to embark on assessment no 3 refused to accept first 2
Have sent email asking for written confirmation
Re. Imposed cap
Imposed PA hourly rate
And refusal to use contingency to facilitate emergency cover when unpaid carer is absent
That was more than 2 weeks ago have resent it twice still no reply
I have one PA 27.35 hours a week all the rest is down to me I am 73 diabetic heart issues and had a stroke no compassion whatever shown
This is happening all over the country
It’s IMO unlawful we really need to get it raised in parliament
I will publish any updated
Good luck to you Hope you get the support you need
Linda