Following on from our recent policy update seminars here is a quick update on what’s coming up and what we’ve been doing.
Although the public consultation linked to the Down Syndrome Act has not yet started, the Department for Health and Social Care (who will be responsible for developing the guidance) have been reaching out and meeting with many organisations, ourselves included, to start getting views and information to inform the next stage of the process. Once the consultation is announced we will inform members of the process and share all the information, as well as setting up a series of events to get feedback and discuss priorities. In the meantime, we will be holding a further event on the Act soon, looking at the range of legal implications that may come from the Act and subsequent guidance – keep an eye out on our social media channels for more details.
Last week saw the release of the Independent Review of Children’s Social Care report, which gathered much attention in the press and across social media. In general, we liked a number of the recommendations in it, but feel that there wasn’t a strong enough focus on children with disabilities across the whole report – you can read our full statement here. The release of the report is only the beginning of this piece of work though, and there will be plenty of opportunities to engage and influence these plans in the coming months.
Engagement with the SEND Review is a current key priority – last week the Education Select Committee held a session looking at the report with guests including IPSEA, the Local Government Ombudsman and NNPCF. Significant concerns were raised on the accountability of the SEND system, the reduction of parental rights and the underlying issue of the costs of SEND. We will be holding some SEND Review events and consultation sessions in June – details will be shared next week.
We have recently submitted a response to a consultation on ‘Public Engagement’ in relation to the Health and Care Act. This is especially important, as Integrated Health Boards are in the process of being set-up and these will come into effect around the beginning of July. We have asked for a greater level of engagement with individuals who use health and care services and new opportunities created for people who have Down’s syndrome to help improve services for others. We also requested that Integrated Health Boards should include those who have lived experience of Down’s syndrome, especially important given the advent of the Down Syndrome Act 2022.
We are in a very busy time, with a range of plans and strategies taking place which will have an impact on children and adults who have Down’s syndrome for years to come – we will continue to get key information out to our members as quickly as possible, and we will continue to try to speak to you and gather your views to help shape our plans and responses to some of these issues.
If you have any questions about our national policy work please email us at policy@downs-syndrome.org.uk