🎗️ Down Syndrome Act 2022: Local Authority Guidance

• Jack Rankin, MP for Windsor, highlighted the importance of the Down Syndrome Act 2022 and the need for specific guidance for local authorities.

• He praised the dedication of a local campaigner, Millie-Anna, and stressed the need for the government to listen to people with Down syndrome and their families.

• Rankin criticized the slow progress and delays in publishing the guidance required by the Act, pointing out the low number of integrated care board (ICB) leads appointed to support the initiative.

• He urged the separation of Down syndrome from broader learning disabilities in the guidance to prevent diluting its effectiveness and purpose.

• Rankin called for mandatory Down syndrome-specific training for professionals and accountability for implementing the Act’s requirements.

• The Parliamentary Under-Secretary of State for Health and Social Care, Ashley Dalton, acknowledged the importance of the issue and the government’s commitment to the Act.

• Dalton confirmed ongoing work to develop the guidance, emphasizing stakeholder involvement and a planned consultation by summer.

• She clarified that the guidance will be Down syndrome-specific but will also note potential wider benefits, in line with commitments made during the Bill’s passage through Parliament.

• Dalton committed to ensuring that people with Down syndrome have direct access to and support in participating in the guidance consultation.

• She addressed the issue of specific training, stating that providers should consider whether staff need Down syndrome-specific training and that this would be highlighted in the forthcoming guidance.

The disagreement level in this parliamentary session is rated at 2 out of 5. The disagreements observed are primarily procedural and policy-focused rather than confrontational or highly contentious. Here is a detailed analysis of the session and the disagreements noted:

1. Policy Implementation Disagreement: The primary point of disagreement is around the implementation and specifics of the Down Syndrome Act 2022 guidance. Jack Rankin criticizes the delays and what he perceives as a lack of priority given to publishing the guidance. He mentions that the guidance has faced multiple delays and that progress has been slow. He specifically argues against expanding the scope of the guidance to include broader learning disabilities, stating that it would dilute the focus and effectiveness of the Down Syndrome Act. This disagreement is evident when Jack Rankin says, “In the Department’s call for evidence, it was mooted that the guidance could be extended to cover those with broader learning disabilities. That was never the purpose of the Act and risks watering down the legislation so far as to make it meaningless.” The Minister, Ashley Dalton, responds by affirming the Government’s commitment to Down syndrome-specific guidance while also indicating that references could have broader benefits, showing a nuanced disagreement rather than a complete opposition.

2. Scope and Specificity of Guidance: Jack Rankin emphasizes the importance of having guidance specific to Down syndrome, separate from general learning disabilities, and requests a supplementary document to handle other issues. He states, “Will the Minister commit to separating learning disabilities from the guidance completely and instead add a supplementary document?” The Minister confirms that the guidance will indeed be Down syndrome-specific but hints at incorporating broader benefits, which suggests a slight disagreement on how specific the guidance should be.

3. Engagement with Stakeholders: Jack Rankin expresses frustration over the lack of engagement with key stakeholders, including the all-party parliamentary group on Down syndrome (APPG) and the National Down Syndrome Policy Group (NDSPG). He mentions that these groups have been rebuffed for six months and only three of the 11 organizations involved are specifically focused on Down syndrome. This disagreement is procedural and relates to how the Government manages consultations and engagement. The Minister acknowledges the engagement and assures continued feedback with these groups, indicating an effort to resolve the disagreement, but the past delays and perceived lack of attention remain points of contention.

4. Accountability and Progress: Another area of disagreement revolves around the accountability and the lack of progress in implementing the Act. Jack Rankin points out that there are currently only three board-level executive leads for Down syndrome out of 42 integrated care boards in England, calling it an “affront to the democratic process.” This indicates dissatisfaction with the pace and effectiveness of implementing the Act’s requirements.

While there are clear points of disagreement, they are expressed more as policy and procedural critiques than as heated exchanges. The Minister’s responses aim to address these concerns and assure continued action, which helps to keep the disagreement level at a moderate 2 on a scale of 1 to 5.