SDS experience and advice?

1

Hi all
We get SDS for our disabled child. We also get Universal Credit.

Can I ask others something please?

It doesn’t seem like you have much autonomy or self direction with the SDS.

Our child’s needs and interests change naturally and then we have to wait months to get it changed or wait until the next financial year to have those changes considered. Then by the time they consider them, their interests or needs have changed again. Making it pointless.

For example, into the 2nd year of SDS she really really wanted one of those lifelike dolls. But by the time they will consider it then she no longer wants or would benefit from one. There is plenty of funds available as the items approved from the last year are not needed again in the 2nd year ie IPad, swing etc.

Plus they approved as non reoccurring helpto wards travel costs for a short break but they said that we would need to go though a full reassessment to have it considered again and it may or may not be approved and the budget could be decreased also. So there’s no way we want to go though a reassessment especially as it’s so overwhelming and such a strain

https://www.careinfoscotland.scot/topics/support-for-carers/short-breaks-from-caring/

So why cant they just say OK 30% can always be used towards a short break, 30% can be used for sensory equipment, 30% can be used for a PA, 10% can be used for respite ie spa etc.

Or why cant we just email and say look she really would benefit from buying this particular sensory toy now, the funds are available and they email back within a few days at the most and approve it?

Why is it so inflexible and at the start of the year they approve and disapprove a list you give them. Then you are stuck with it for months and mo chance to change unless a reassessment or a review many months later?

Why cant they just say 30% can be used for sensory equipment rather than having to details the exact equipment and the exact penny amount. As the next year it will change.

Or 30% for activies, not just trampolining at £12.00 no more than this per session,.why cant it cover whatever activities you child wishes ie dance, art and crafts etc.

Makes the SDS non empowering, none self dorected and so inflexible that it becomes unusable.

Then the time it takes for the LA to do anything and the lack or communication adds futher un usability to the SDS.

Like they preapproved trampoline for £12.00 and said we cant spend more than this but the trampoline sessions went up to £13.00 per session and the trampoline place said they cant split the payment ie we pay £12.00 on the SDS prepaid all pay card and we pay the £1.00 from our own money. The LA said we cant spend a penny over on what’s been preapproved per session so we couldn’t use it for the trampoline session anymore until a review or a reassessment was done in months time.

They make it impossible but they say “ohh it’s to make it robust”.

Surley there must be a way to do something about this? Is there no legislation about this?

2

There is a lot you can do about it. It’s late just now and I’ll say more tomorrow. You don’t have to have a pre-paid card. You can get the DP into an account you control, then you can spend it on whatever you want as long as it meets the outcomes specified in the support plan. What you describe is unfortunately endemic across Scotland it seems.

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Thanks. I would appreciate your advice.
Im interested in knowijg more about dorect payments? We would get I think they are called direct payments into our bank account towards a holiday for the first 2 years. But then they saif you will all have to have a full reassessment for that to be considered again and then the SDS budget might be rediced and also the help towards a holiday might not be approved. So we said no we dont want a full reassessment.
But wny cant they just carry it on without a full reassessment?

I also don’t see why a full reassessment would be needed for us to still get help towards a Short break or a holiday as they did for the first 2 years? Especially when we don’t even get a carers budget and they totally rebuffed oir attemps at getting a carers budget previously.

Why cant they just make it simple and just delicate say £2,000 for our child’s activies, £2,000 for their sensory equipment and £2,000 for a short break/holiday. Then we have the self direction to utilise the funds with flexibility?

Why does it have to be specific amounts ie £12.00 per session twice per week for Gravity for example? Why cant it just be £2,000 for all activies l? It would make things so much easier.

The SDS and carers budget is very important for us as being eligible and being in receipt of Universal Credits we are low income.

I asked them 2 years ago when doing the initial full assessment about the carers budget and they said this council doesnt do a carers budget and they expect the childs SDS will inadvertently benefit the carer. They organised a carers assessment to be done which the local carers centre came out and did a carers assessment and gave to social work and they said to them we as carers would benefit from this and this but despite pushing and asking, nothing came of it at all and the carers centre said they have dine all they can.

We finally managed to get them to agree to a review and not a full reassessment and they said this

" It should be noted that we endeavour to ensure the budgets in payment are being fully utilised and as part of the review process will look to realign all funds. Any underspend will be reflected in the new budget and removed on a permanent basis, to reduce the need for funds to be continually re-couped. This allows us to reduce the need for an overcomplicated finance plan and also allow Social Work Services to ensure we adhere to our financial procedures."

I dont understand if that means they will redice my disabled childs SDS budget or just remove certain activies that they dont use?

The only reason for the underspend is because they wont allow flexibility.
There would be no underspend if there was flexibility ie we could go out and buy some sensory equipment or use it for a family holiday.
But they wont allow that as they said only help for the travel costs for the child allowed and thats no longer included and only the sensory equipment approved for specifically 2 years ago allowed ie ipad and swing etc…

4

You say you have SDS and a pre-payment card. That strongly suggests to me you have SDS Option 1: A Direct Payment already. HOWEVER! It doesn’t much seem like a direct payment does it? Not when it isn’t a payment, given directly to you, right?

Is that the situation you are in? If so, your local authority, like local authorities all over Scotland it seems, are doing it wrong and are very probably acting unlawfully. There is legislation about SDS, there are also regulations. These MUST be followed. There is statutory guidance which also must be followed unless there is an extremely good reason not to. All these completely trump local authority policy, so they are the first place to look for help. But first please confirm you chose Option 1: A direct Payment when your social worker asked which of the four SDS options you would like.

Yeah, this is similar to my experience. Under the Carers (Scotland) Act 2016 LAs have a duty to prepare and Adult Carer’s Support Plan (ACSP) for adult carers they have identified. This includes you presumably. It appears they get other people to do this sometimes, for you it was the carer’s centre, for me it was Quarriers. Under the 2016 Act LAs also have a duty to publish eligibility criteria for adult carers (section 21). Then they also have a duty to provide support to the carer to meet the carer’s eligible needs (section 24). In my case, a ACSP was sort of prepared but no eligibility assessment was done I don’t think, and certainly no support offered. If support is offered, the LA must offer the choice of the four SDS Options outlines in the Social Care (Self-directed Support) (Scotland) Act 2013. This duty is in section 7. I never bothered pursuing this in my case. In any case, if your LA really did say ‘this council doesnt do a carers budget’ then that’s nonsense. All councils have to support adult carers eligible needs, and in doing so offer the four SDS options as far as I can tell.

This doesn’t constitute legal advice, I’m not a lawyer!

That’s a nice trick isn’t it? They make it really hard to spend your budget, and then when you don’t manage to spend it, they say ‘well you don’t need it then,’ and use that as evidence to reduce your budget! These LAs need to be taken to court and destroyed.

5

Josh thank you.

Yes its an allpay card but thought a direct payment was a payment that went into our own bank account? So we already have direct payments set up?
I hope this answers your question? Its paid monthly into an allpay account on a allpay card that we use to pay for things on this card. Like a credit card.

When you say the LA are doing it wrong, what do you mean exactly in our case?

Yes they told me they dont do a carers budget, they did a carers assessment by the local carers centre but no funds were given to us to meet our needs as carers despite asking. They said the carers centre can ask the LA for funds for us as carers which they did but noting came of it. And gave up. What should we do here?

So the last point is that we didnt want our childs SDS budget to be reduced potentially so we said we didnt want a full reassessment and just wanted to make use of the underspend by changing somethings so we can use it for things we need. But does this sound like they are actually going to reduce our disabled childs budget anyway?

Yes we could easily use the underspend but they refused us to be able to use alot of the funds which should have been accepted ie a short holiday for respite, sensory toys and respite for us ie the carers etc. What do we do?

We have even had legal advice and legal representative to help with the carers side of things but got no where.

6

That’s what it was originally. I’m not sure of the exact history, but I think sometimes people had trouble managing the money, so LAs started offering managed accounts and pre-paid cards to make things easier for people. The regulations say that LAs may use these alternatives to using a regular bank account, but ONLY if the direct payment user asks for it. They may NOT force these alternatives on the DP user. So if you have a pre-paid card, it’s still under the category of SDS Option 1: A Direct Payment. The problem now is that Local Authorities have decided to make these alternatives the standard way DPs are delivered. They’ve made up their own rules, ignoring the law, and failed to tell people that they can have the DP paid into an account they control, and instead tell them they must have a pre-paid card or a managed account. It’s unlawful not to inform people of the nature and effect of a direct payment, and it’s unlawful to restrict providing the DP only by means of a pre-paid card or managed account.

In my case I was forced to have a managed account. I took legal action and got them to pay it into an account I set up in my name and under my control. So you can try the same, starting with a formal complaint. You can even use my case if you want. I have an admission in an email that my LA acted unlawfully, if you want to use that to strengthen your case.

7

Did the carer’s assessment specify the support you needed? You could ask the local authority why they decided not to offer you the support identified in the ASCP. In my opinion they MUST give you that information. Time limits may be an issue. If it’s over three months ago you may have run out of time to challenge it. Maybe it would make better tactical sense to reset the clock by asking the LA to provide the support you need as specified in the ASCP. If they give you a fresh ‘no’ that might reset the clock. Again, this isn’t legal advice and I don’t know the details of your particular case.

I don’t know. Any attempt to reduce your child’s budget can be robustly challenged. Especially if their argument is “Well she didn’t spend all the budget, so that means she doesn’t need it,” which is a terrible argument considering how they haven’t given you the choice and control you need to exercise your right to spend the money in accordance with the agreed outcomes as you see fit.

Do you have a support plan with the agreed personal outcomes in it?

I don’t know all the details of your situation. But what I did, and what you might want to consider, is requesting they pay the DP into an account set up for this purpose. In my case, before I asked them, I set up a separate bank account just for the DP, then wrote them a letter saying ‘pay the DP in here from now on’. They refused and I took legal action against that decision.

Once you have control of the DP, you can spend it as you see fit. And as long as you can show that your spending is in accordance with the agreed outcomes (and isn’t criminal etc), there is nothing they can lawfully do. I drew up some checklist sheets to help me evidence that any spending was in pursuit of the agreed outcomes and was compliant in other ways. There are things they can unlawfully do to stop you, of course. Like stop the DP payments.

8

Why didn’t that work?

9

Josh thanks so much.

Yes please give me details if possible for the case you had regarding the DP?

So now, with the DP going straight into your own bank account rather than a Prepaid all paycard, how is it different or give you more flexibility?
As for instance, everything on the SDS budget for our disabled child is listed ie

IPad £120
Trampoline £12.00 per session once per week.
Garden swing £200
PA £3,000

Etc etc…

We have to give receipts for everything and we can only buy to the exact penny what they have approved. We cant go over 1 pence more. Under is fine. For instance, we couldn’t buy a sensory light for £120 rather than an IPad for £120, as it was approved only for an Ipad.
As soon as we buy something we have to give them the receipt so it doesnt matter if we use the allpay card or the money goes in our account and we pay for it. Or am I missing something?

So the carers assessment doesnt actually say much. It does say though that we don’t get any break or any respite for myself and my spouse.

It does say

Intended outcomes
“myself and my spouse to have an opportunity to access a break from our caring role” ,

Outcome support plan what needs to be done

Provide details on short breaks funding

Other things it says under intended outcomes are things like “provide access to ASN groups or places to visit and provide support for us as carers and point us in the direction of support groups etc”

That’s about it. The first part on the carers assessment is just talking about our child’s disability and who we are as a family etc.

Not sure wether we could goto the LA and ask for a break from our caring role as stipulated in the ASCP but that doesnt I guess mean a holiday and it also means I guess without our disabled child as it says a break from our caring role.
Then it says about telling us about short break funding.

Yes we have a support plan with the agreed outcomes in it things like

“Maximise all opportunities, technology and engage in the community.
Utilise equipment and technology”
Support the family and my child to continue to maximise all opportunities for learning and development in life as well as in education.
That my child’s choices where applicable are listened too and provided "
To provide support to allow myself and my spouse to continue our care role positively

Recommendation:

To secure a new budget via Self Directed Support to allow purchase of services and support that would improve’s socialising, behaviours and life experiences as well as allow the family planned respite for themselves and their own relationships."

So these are some of the outcomes and recommendations in the SDS care plan.
What do you make of it? Anything we can maximise? We really miss the funds we used for a family holiday that they said they won’t provide again unless we have a full reassessment :frowning: which we don’t want to do and they are ok with that.

We really hope they don’t reduce the SDS funding due to the underspend when we could use it to meet the outcomes in the care plan.

The carers budget pursuit with a legal representative didn’t work as the LA said they don’t do a carers budget. So it was left. Also the legal representative said she wasn’t able to do much as she was contacted to help only with the SDS.

10

With your child’s SDS you mean? That’s why the lawyer didn’t help with your ACSP? Did the lawyer not even advise you that all local authorities must support adult carers in line with the 2016 Act?

11

Those outcomes look reasonable to me. Are you happy with them? They do not micromanage, so that’s good. It includes in its scope not just your child but also the family - I’m not sure about whether that’s OK or not, but it’s in there and your social worker has signed off on it, so presumably that’s fine. So if you can get control of your DP, you can then freely spend the money in pursuit of these outcomes. Just be clear about the justification - you could write it down - “This spending meets the agreed outcomes in the following way…” and read back what you’ve written. If you’re not sure you could discuss it with another family member. You could discuss it with your social worker, but then he/she might say “Oh, you have to seek permission first” which would be annoying and untrue. Make sure you keep your receipts. At the end of the year when they audit you you can give them all the written justification for the spending. That’s basically what I’ve done over the last two years. They grumble about me not seeking ‘authorisation’ but I challenge them to tell me why I should, and they don’t reply. I had to push them to confirm that I had passed my audit and spent the DP appropriately and they did confirm that.

12

I don’t understand this bit. So the support plan for the current budget recommends seeking a second SDS budget for the same person? Is that it? That sounds very odd.

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Yes sorry our childs SDS the lawyer could only help with that. As she said she cant help with the ACSP but did advise we SHOULD be getting a carers budget though. But our LA said they dont do a carers budget. Our lawyer said this is untrue and they should do one.

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Thanks. Is there any legislation to back me up if I did get the direct payments and used the funds to meet the agreed outcomes and used the funds on things which were not previously authorised?
Cant we just use the prepaid allpay cards for this rather than asking them to send the money to our personal bank accounts?

Yes we are happy with those ourcomes and also for instance could we just take outr child to say gocarting which has not been previously approved by LA and say well look on the care plan on outcomes it says

"To provide physical fun activities that encourage exercise as well as inclusion whenever possible to maintain a
healthy life balance.’

“To always encourage active play and fun activities to provide physical exercise and maintain her health”

"
Wellbeing Indicator - ACTIVE - Desired Outcome(s)
To enable and support her to access existing as well as new activities that promote physical exercise,
integration and fun."

So going gocarting meets that outcome?

Also for using the funds towards travel costs to see family far away in the wider community or going on a family holiday could we not quote from outcomes.

“To promote social integration and feeling of belonging in the Local & Wider Community”

“Continue to promote life skills and communication development tools where possible.”

By traveling it promotes life skills ie and helps her commication development by interacting with her wider family who live far away by using the funds towards the travel costs?

So buying new sensory equipment which was not previously approved could we use this outcome on the plan.

“To utilise equipment and technology as well as any new resources that would benefit her”

Also in the outcomes it says

“That her choices where applicable are listened to and provided”

So she is asking for a particular sensory toy or a particular family holiday, then we feel its applicable hence we use the funds for said sensory toy or said holiday?

“Continue to encourage and support her to develop her Social Skills and any opportunities for positive peer interactions, social inclusion and continuing existing as well as any new experiences.”

So again could we argue going on a family holiday is a new experience for her and spend some of the funds for this.?

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“To secure a new budget via self directed support…” good question?? I thought it just refered to the budget that was about to be pit into place? As at the time that was written there was no budget.

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Maybe, not sure. I think I’d need to see the actual document as it’s confusing. I don’t have much experience of support plans that are apparently not just for one person, but include their family explicitly. The support plan sounds a bit messy. SDS Scotland might be better able to tackle that. @MarkieBoy

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There is statutory guidance, which is nearly as good as legislation: Section 3: The Self-directed Support Options - Social Care (Self-directed Support) (Scotland) Act 2013: statutory guidance - gov.scot

Flexible use of direct payments: the choices available to a supported person under a direct payment

As set out in the section on funding and flexibility, the authority should take steps to ensure that the supported person can use their direct payment in any way, provided that the support purchased via the payment is in line with the assessment and support plan, meets the supported person’s needs and is within the criminal and civil law.

Typically, direct payments have been understood as a route to employing a personal assistant. However, a direct payment can also be used to purchase a wide range of things. For instance:

a service from the local authority or from another local authority;
a service from a provider organisation in either the voluntary or private sector;
a product which can help to meet the supported person’s needs;
a short break; and
anything else which will help to meet the supported person’s needs and the outcomes in the support plan.

The 2014 SDS Regulations provide additional safeguards in relation to the direct payments – both for the authority and for the supported person. This is to recognise the unique nature of a direct payment and to support practitioners and individuals when choosing the direct payment option.

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Maybe, I’m not sure how the pre-paid cards work in detail. What happens if you use it to purchase stuff that has non been pre-authorised?

It sure looks like it to me.

I’d be careful with that one as there might be issues with using the money to benefit yourself and family rather than the supported individual themselves. But it might be OK. This is one where I might have a conversation with my social worker first, not to ask permission (you don’t need permission) but to get her to help you understand if this is a reasonable use of the money given the agreed outcomes and the potential benefit to more than one person. The trouble is the social worker might not get why you are asking them. You might ask “Can you help me think this through?” and they might reply “I’ll speak to my manager who will tell you if you have permission or not,” which would be incredibly irritating. What is you social worker like? Will she understand that you are not asking for permission, but advice?

(Usual disclaimer: this isn’t legal advice, don’t rely on it - get legal advice or work it out for yourself.)

That seems more straightforward, yes.

I make a checklist which you might find useful. I use it for every item of expenditure to make sure I’m within the rules. I collected the rules from legislation, regulations and statutory guidance. I posted it on the forum here: Resource - Expenditure test sheets

Also here is the letter I wrote to get my DP under my control: Ask permission before, or check up afterwards? - #13 by Josh
I had to follow it up with legal action, but that’s how I started.

19

Im sorry to hear you are having such a hard time. Reading your post makes my blood boil. I don’t have much more to suggest than Josh but I really sympathise. I am also at my wits end trying to get things right for my family. LA’s do not seem to fully embrace the ethos of SDS. Outcomes for my child’s package were agreed without my involvement and the assessment was not even accurate. As per a very long history of challenges with our SDS, I asked for an account in my own name to manage the direct payment. This was refused and I was issued with a prepaid card which was sent with a very restrictive protocol which does not seem to fit well with the guidance. It is stated that all spends have to be agreed with the practitioner, that only 4 weeks of contingency funds can be held in the account, that there are limits on the amount that can be spent on a long list of things, that the account will be subject to periodic monitoring. I like our current social worker, albeit the whole SDS journey has been horrendous, but I do not see any need or requirement in SDS legislation and guidance for me to ask or get their approval for spending from the direct payment. On one occasion this led to a 6 week delay in accessing the support that was needed which I was told was reasonable! I have had countless discussions with the relevant professionals about it which have been fruitless and exhausting. I really hope that you can get a way forward which is better for you and your daughter. I don’t think your LA should be disapproving of the suggestions you make for how the funds should be spent if these meet your outcomes. You should be supported to use your budget flexibly and creatively - I think this is within standard 12 of the SDS guidance.

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@toleranceandrespect it but it might be helpful to know which local authority area you are in. There is such a big difference in how each LA operates - especially regarding direct payments (Option 1) - and there might be someone on the forum from your LA who has direct experience they can share.

@Josh has pointed out the relevant bits from the Guidance and, as @MaryP says, SDS Standard 12 is about how you use your budget - LAs often need ‘reminded’ about these!

There is info in the SDS Handbook that might be helpful:
Self-directed Support budget as part of your child’s support - The SDS HandbookThe SDS Handbook
How to challenge decisions - The SDS HandbookThe SDS Handbook

I will give your individual questions some more thought…

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