Health and Social Care Alliance Scotland (the - ALLIANCE)

Health and Social Care Alliance Scotland (the
ALLIANCE)
Scottish Carer’s Assistance Engagement Event –
Learning disability
19 May 2022
Introduction

The Scottish Government are in the process of developing Scottish Carer’s
Assistance, a devolved benefit that will replace Carer’s Allowance in Scotland.
Through the consultation period, running from 28 February to 23 May 2022, the
Scottish Government arranged engagement events to hear from specific groups of
people.
The ALLIANCE were approached to organise a session to hear from unpaid carers
with learning disabilities. In partnership with the Scottish Commission for People with
Learning Disabilities (SCLD), we recruited three participants with varying
experiences of providing care. The session took the form of a discussion, with
questions framed around the core themes of the consultation.

Individual experiences of unpaid care

To help provide context for the discussion, participants were first asked to share their
own experiences of unpaid care. One participant provided regular care for a family
member who also has a learning disability. For them, caring was a shared role, with
another family member generally providing care during the day, whilst they provided
care at night.
A second participant similarly provided care for a family member with a learning
disability, primarily through visits and advocating for their rights. As they lived in a
rural area, they noted additional difficulties in travelling for their caring role, both in
terms of the cost of doing so and the amount of time it took. This situation was
specifically exacerbated by a lack of suitable housing for disabled people in their
local area. If there had been suitable housing, the person they cared for would be
able to live closer to them.
The third participant cared for an elderly relative.

Individual experiences of Carer’s Allowance

One of the participants shared that they had previously received Carer’s Allowance,
but when they started earning more money the payment stopped. They added that
they had only been working 16 hours a week, but that the income from that was
above the limit. They found this frustrating, and in particular the need to re-apply if
they became eligible again later was a barrier to them accessing social security. The

length of time it took to process applications was also mentioned as an issue. Even
though the payment was backdated, if you needed the money at the time, getting it
later is not any help. Overall, they felt that having Carer’s Allowance withdrawn was
almost as if they became an “unpaid unpaid carer”, and it felt as if they were not
recognised by the government as a carer anymore.
Another participant has not received Carer’s Allowance and would not qualify for it.
They stated that they would like to have some recognition given for the care and
support they provide, even if it does not necessarily reach the 35-hour threshold, and
they’d like the Scottish Government to consider that. They emphasised that it was
not about the amount of money but rather the recognition.
The final participant had applied for Carer’s Allowance but would actually have been
worse off if they received it, due to the impact on their other payments. They would
prefer for any carer’s payment to be a completely separate entitlement, that does not
conflict with any social security payments.

Administering Scottish Carer’s Assistance

This part of the discussion centred on the administrative components of Scottish
Carer’s Assistance – how they could best be assisted to access it, and how it could
be communicated and promoted.
The current process of applying for social security payments under the DWP was
described by one participant as “a nightmare”. They felt they had to speak to too
many different people but did not know where to go for help. Although they did get
some support from a local organisation, they felt that it had previously been easier to
apply for payments, but that it had gotten more difficult in recent years. They were
worried that other people might not know where to go for support and felt it would be
useful for letters to includes this information.
This was echoed by another participant, who felt that support to complete
applications was important. They also did not like that if you lose entitlement to
Carer’s Allowance at present, you have to re-apply from stage one, and then wait
weeks for payments, and they felt it would be an improvement if payments were able
to resume immediately for anyone who had previously received them.

Appealing social security decisions

This part of the discussion covered appealing decisions on social security
applications.
The appeal process for DWP administered payments was felt by one participant to
be a struggle, in particular having to find the evidence to back up their appeal. They
explained they have had to lodge multiple appeals and that the length of time and
amount of effort spent on them is very draining, on top of the serious impact to their
financial situation. They reiterated earlier points about it not being clear who they
could approach for support.

In general, participants felt that the 28 days to appeal under DWP processes was not
enough. It is difficult to find support in that period so having more time would be
welcome.
One participant also noted difficulties with assessors submitting incorrect information
at the initial application, which then resulted in the need to appeal. They felt the
people administering payments did not understand how difficult the process was,
and that they lacked understanding of disabled people’s conditions. If there was a
better understanding of the realities, that might help make the process fairer. Taking
more time to learn about people’s situations and sort problems with applications
earlier on would be better than deciding not to award a payment and that then
requiring a full appeal.

Suspension of payments

This part of the discussion centred on the proposals around suspension of
payments. One of the participants explained that they felt apprehensive about
providing updates to the DWP about changes in their condition for fear that their
payment would be suspended and they’d have to start the process all over again.

Short term assistance

This part of the discussion related to the proposal to continue paying Scottish Carer’s
Assistance whilst a cared for person is receiving short term assistance whilst they
appeal a decision relating to their qualifying payment. It was felt this was an excellent
idea, and the general principle of ensuring people were still supported with payments
during an appeal period was viewed positively.
The importance of financial security was emphasised but concern was initially
expressed about the prospect of paying back the money if the appeal was
unsuccessful, though participants were reassured to hear that short term assistance
is not required to be paid back, regardless of appeal outcome.

Carer’s Allowance Supplement

This part of the discussion covered Carer’s Allowance Supplement, and options for
how to pay it in the future.
The participant who had previously received Carer’s Allowance had also received
the supplement at that time. They liked receiving it as a lump sum, as they felt it was
something they could then use to treat themselves that was separate from the
regular income. They added that in their case they’d found the standard level of
payment from Carer’s Allowance had been enough to support them in their day-to-
day expenditure.

Future changes

This part of the discussion involved several of the proposed future changes to
Scottish Carer’s Assistance.
Although an increase to the earnings limit was welcome, the participant who had
previously lost their payment because of it felt there should not be an earnings limit
at all. They felt that if someone was doing the 35 hours of care, they should qualify
for the payment regardless of how much they are working as well. Especially given
the current sharp increases in the cost of living, they argued that people should be
able to take on more hours of work if they could, without losing their other payments.
Participants agreed that people in full-time education should get carers allowance.
They felt it would incentivise carers to keep caring whilst in education. In general,
participants believed that people providing care should always be entitled to support,
regardless of their other circumstances.

Payment for long term carers

One of the participants noted they had previously received Carer’s Allowance but
that had stopped after the person they cared for stopped receiving a qualifying
payment. They felt this was unfair, and that paying on the basis of medical advice
about the person’s need for care, rather than on the basis they are receiving a
qualifying payment, would be better.
Participants re-affirmed their previous statements that anyone providing care should
receive recognition. The value and frequency of that payment was not seen as being
as important as the fact the payment would exist at all. One participant added that
this payment should be unconditional, without taking into account other money the
carer may have, specifically giving the example of savings.

Other issues arising

Some additional points were raised in the discussion that did not directly relate to the
questions asked. One participant noted the particular need for Easy Read format
documents, so that they could best understand what was happening.
It was also noted that changes to the name and number of payments was confusing,
specifically giving the example of Disability Living Allowance being replaced with
Personal Independence Payment and then again with Adult Disability Payment.
Being re-assessed for payments was viewed very negatively, especially for people
with learning disabilities. They pointed out they would always have a learning
disability, so it did not make sense for them to keep proving that they do.

Appendix: Discussion Questions

The following questions were produced to guide the discussion and are provided for
information. Not all questions were necessarily asked, and some may have been
framed differently to suit the context.
   1. Could you tell us about your experiences as an unpaid carer?

   2. Do you currently receive Carer’s Allowance?
      • If yes, what is your experience of it?
      • If not, is it because you are not eligible, because you do not know enough
         about it, find it off-putting etc.?

   3. How can Scottish Carer’s Assistance best be set up to help you apply, get
      your payments, receive information, and direction to other sources of support?

   4. Do you have any experience of appealing social security decisions?
      If your application for Carer’s Assistance is rejected, do you think six weeks is
      a reasonable period for you to appeal the decision if you want to?

   5. Payments for Carer’s Assistance might be suspended in some cases – for
      example, if there are worries about financial abuse, or if the cared for person
      has their qualifying payment suspended.
      In other cases, carers getting “overlapping benefits” will get a payment of £0
      rather than a rejection, so they can still access other support.
      What situations might suspension of payment be sensible in?

   6. If a cared for person is appealing a reduction or removal of their disability
      payment, they can get “short term assistance” which will pay them the same
      amount, so they keep receiving payments until their appeal is heard. Do you
      think carers should get Carer’s Assistance during this period too?

   7. The Scottish Government are thinking of ways to pay people more through
      Carer’s Assistance, for example through the Carer’s Allowance Supplement at
      the same time and paying £10 more to carers caring for more than one
      person. They are considering whether to pay these as lump sums or regular
      payments at the same time as Carer’s Assistance.

          •   Do you receive Carers Allowance Supplement just now?
          •   If you receive Carer’s Allowance Supplement just now, do you like the
              lump sum payment?
          •   What do you think of these ideas?

   8. In future, the Scottish Government want to make more changes to Carer’s
      Assistance. They want to:

•   allow carers in full-time education to get Carer’s Assistance, count time
              spent caring for multiple people towards the 35 hour requirement,
          •   keep paying Carer’s Assistance for longer after the death of a cared for
              person, and
          •   increase work and earnings limits to 16 hours a week.

                 o What do you think of these ideas?
                 o Would any of these be particularly helpful to you?

    9. The Scottish Government are also considering making payments to more long
       term carers, including those providing care for someone not receiving a
       disability payment. Do you think this is a good idea, and how do you think it
       could work?

About the ALLIANCE

The Health and Social Care Alliance Scotland (the ALLIANCE) is the national third
sector intermediary for a range of health and social care organisations. We have a
growing membership of over 3,000 national and local third sector organisations,
associates in the statutory and private sectors, disabled people, people living with
long term conditions and unpaid carers. Many NHS Boards, Health and Social Care
Partnerships, Medical Practices, Third Sector Interfaces, Libraries and Access
Panels are also members.

Our vision is for a Scotland where people of all ages who are disabled or living with
long term conditions, and unpaid carers, have a strong voice and enjoy their right to
live well, as equal and active citizens, free from discrimination, with support and
services that put them at the centre.

The ALLIANCE has three core aims; we seek to:

•   Ensure people are at the centre, that their voices, expertise and rights drive
    policy and sit at the heart of design, delivery and improvement of support and
    services.
•   Support transformational change, towards approaches that work with individual
    and community assets, helping people to stay well, supporting human rights, self
    management, co-production and independent living.
•   Champion and support the third sector as a vital strategic and delivery partner
    and foster better cross-sector understanding and partnership.

Contact

Allan Faulds, Policy and Information Officer
allan.faulds@alliance-scotland.org.uk

Rob Gowans, Policy and Public Affairs Manager
rob.gowans@alliance-scotland.org.uk

0141 404 0231
www.alliance-scotland.org.uk
@ALLIANCE Scot