The Down's syndrome association response
Updated 23 March 2020
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This publication is available at https://www.gov.uk/government/consultations/how-should-dwp-involve-disabled-people-in-changing-how-it-works/the-downs-syndrome-association-response
1. Question 1
Can you tell us about the process? For example, how did the Departmnet for Work and Pensions (DWP) invite you to take part?
1.1 Question 1 response
We are registered as a stakeholder with DWP and occasionally receive direct email invitations, having participated in other consultations in the past.
2. Question 1a
What information and or feedback were you asked to give to DWP?
2.1 Question 1 response
We were consulted prior to the creation of PIP, including arranging our own Focus Groups with parent carers of people with Down’s syndrome with a DWP representatives in attendance (we believe this was in 2011, but not exactly able to recall the dates).
We submitted written evidence to the DWP consultation about work capability assessments in 2016. Our in-house Welfare Benefits Advisor wrote a detailed submission.
We have separately been approached by the outsourced company who trains DWP. Assessors (The Centre for Health and Disability Assessments). We felt this was a particularly useful engagement, as we were able to make significant revisions to the guidebook that relates to condition-specific information about Down’s syndrome that they would refer to in helping them assess an application.
3. Question 1b
What were the positives and/or negatives of your engagement with the department? Can you explain why you have this view?
3.1 Question 1b response
We found the engagement was generally very positive and found that many of the recommendations and observations we made were listened to. However, we think more effort should go into involving people with Down’s syndrome, by explaining in ways they can more easily understand and supporting them to give their views.
4. Question 1c
Did you find the process accessible? If you requested accessible formats or adjustments were these made available?
4.1 Question 1c response
Generally, yes, although more of a focus on enabling the participation of learning disabled people in face-to-face meetings would be helpful. It is unlikely this group would feel empowered to submit a written response.
More effort should go into involving people with Down’s syndrome, by explaining in ways they can more easily understand and supporting them to give their views, which may frequently differ from those of their family-carers.
5. Question 1d
Did DWP request that they could speak with individuals and/or groups of individuals from, or represented by your organization, to provide evidence (i.e. interviews, focus groups, etc).
5.1 Question 1d response
Yes, we helped to facilitate a focus group, which was attended by a number of parent-carers of children and adults with Down’s syndrome.
We already have Having a Voice groups, which feed into DSA work at all levels. Our trustee who has Down’s syndrome has been in this position for 15 years. We are developing our work as a priority and have recently created a new post of Inclusive Participation Officer.
6. Question 1e
Did the DWP provide any comments on the advice or feedback that they received from you?
6.1 Question 1e response
It was a face-to-face meeting and so the feedback was more a conversation.
7. Question 1f
Please share any other relevant evidence of your engagement with the department.
7.1 Question 1f response
Our in-house Welfare Benefits Advisor finds most adults do not (or have not been helped to) understand the implications of their benefits being stopped, or how important it is to claim what you are entitled to. Most of the onus is on the carer.
8. Question 2
To what degree have there been benefits from engaging with DWP?
8.1 Question 2 response
It has been generally positive. Although there are still areas which we feel could be significantly improved (see comment below about what we would like to see improved)
9. Question 2a
Have you seen any tangible improvements to policies or practices for disabled people following your engagement with DWP? If so, could you set out what these are? If not, what were the tangible improvements that you expected to see?
9.1 Question 2a response
Information about benefits for people who have Down’s syndrome should include how important it is to understand and communicate how things are, rather than how they might like them to be or think they should be. It need people with Down’s syndrome being aware of their skills in comparison with other people, which is often very hard, especially for people who may like to please, who often have high self-esteem (which we want to maintain) and who actually are telling the truth at their level of understanding. E.g. – Q: can you prepare the main meal of the day (A: Yes). This would be true, but omits all the problem solving and preparation part of the task, which a person with an intellectual disability will likely not understand about, as learning disability affects problem solving and planning abilities by definition (working memory etc.).
10. Question 2b
Has DWP provided feedback to you on improvements the department made as a result of engagement with stakeholders?
10.1 Question 2b response
No, nothing specifically
11. Question 2c
Following your engagement, did DWP give you the opportunity to comment on draft proposals before final decisions were taken?
11.1 Question 2c response
No
12. Question 3
Based on your experiences, would you wish to engage with the DWP in future?
12.1 Question 3 response
Yes, we are very keen to continue our engagement.
13. Question 3a
What do you see as the positives and negatives of engaging with DWP, based on your experience?Would you engage in similar circumstances in future?
13.1 Question 3a response
We feel that we are able to bring our unique perspective of supporting the 40,000 individuals with Down’s syndrome living in the UK. We wish to take all the opportunities we can of continuing to share this expertise and the lived experience of the individuals and families we support.
14. Question 3b
Could the process of engagement with the department be improved? If so, how?
14.1 Question 3b response
Direct engagement with some of service-users, possibly through on of our regular, regional Having A Voice Groups (details upon request)
15. Question 4
Please tell us about other engagement you have had on disability issues with public sector or other organisations outside of DWP? For example: Please explain the process for this engagement?
15.1 Question 4 response
Regular engagement with Department of Health and NHS Digital on writing information resources and developing new policies. This has been a very useful relationship, although we realize our engagement is “Within Limits” and not all of our recommendations have been adopted, as opinions differ and we are one voice amongst many.
16. Question 4a
How did it compare with the way in which the department engaged with you? What were the similarities and/or differences?
16.1 Question 4a response
We have participated in various working groups, where we have met face to face over a period of years.
17. Question 5
In your view, can the DWP’s process of engagement be improved and, if so, why and how?
17.1 Question 5 response
No response.
18. Question 6
Is there anything else you wish to add about this subject?
18.1 Question 6 response
We have a very successful employment project called WorkFit, which places adults with Down’s syndrome into paid work, by working with individuals with Down’s syndrome an the people who support them and matches them into job opportunities. We provide ongoing in-job support and training for host employers. We would welcome the opportunity of sharing our experience of this with relevant DWP partners or welcome a visit to explain more.