Do you have views on adult social care services providing support to people with Down's Syndrome you would like to share?
Yes
Do you agree or disagree that all staff who provide services or support to people with Down’s syndrome, are aware of their legal obligations and duties in providing adult social care services to meet the needs of people with Down’s syndrome?
Council social care staff assess and deliver services to people on their presenting needs - not their specific medical condition or diagnosis. They work according to duties outlined in social care legislation, such as the Care Act 2014, which is not condition specific but is focussed on addressing the needs in a person-centred way.
It is important to note that council IT systems do not record specific health conditions, but these will be recorded within the persons assessment record.
The Down Syndrome Act is a new law, therefore separate guidance on its use will be essential. It will need to outline how it will align with existing legislation and guidance for the Care Act, the Children and Families Act and the Mental Health Act.
It would be helpful to know how progress with the Down Syndrome Act’s core objectives will be evaluated. Any corresponding impact measurements will need to be set out clearly in the Guidance, with due consideration given to any resourcing and capacity implications. A new adult social care assurance regime goes live in 2023 and there is also an integrated care system assurance being developed. The Guidance will need to reflect how any measurements associated with the Down Syndrome Act will be aligned with the final assurance regimes. The LGA would want to be included in any discussions relating to measurements of the Act, as these will be new requirements for councils.
What would be the most helpful things to include in the guidance for those organisations providing adult social care services to people with Down’s syndrome and their families and carers?
Many adult social care professionals have extensive experience and knowledge of working with people with learning disabilities. It would be helpful for the guidance to have some proven examples of good practice in supporting and communicating with people with Down's Syndrome. It should challenge myths and misconceptions about Down's Syndrome.
It would be helpful to include information on the common presenting health issues of people with Down's Syndrome throughout the life course, including comorbidities and dual diagnosis. It should include detailed information on ageing and dementia of people with Down's Syndrome and end of life care.
Some outline of personal budgets and personal health budgets for people with Down's Syndrome would be helpful to include.
Training to support the Act may be helpful. Any new training requirements will be a new financial burden for councils and will need to be funded. Social care services are under a great deal of pressure in terms of demand and activity so it would be helpful if any training related to the guidance is relatively light touch, low cost, and easily accessible and supports core professional development – a possibility may be an associated eLearning course.
The Oliver McGowan Mandatory Training is due to be introduced, this will ensure that social care professionals receive training on learning disabilities - including Down's Syndrome. Social care also needs funding to deliver this training and not just the NHS.
The guidance should have clear links to social work education. The role of universities and Social Work Teaching Partnerships in meeting the requirements of the Act should be included the guidance. The guidance should also reflect the role of Practice Educators.
The guidance should have a section on preparing for adulthood. If a young person with Down's Syndrome has support needs and receives support from social care, education, and health services, they will require some specific planning, exploration, and agreement on a future plan. The plan can be shared with the services that support them to prepare for adulthood. The guidance should outline what national and local support may be available (National Development Team for Inclusion (NDTi): Preparing for adulthood: All tools and resources).
A list of current resources on Down'sSyndrome would be helpful. Some recommended resources to include in the guidance are included at the end of this submission.
Do you think there are barriers in providing adult social care services for people with Down’s syndrome?
The adult social care system is under pressure from high demand and a lack of adequate funding, this can present a barriers or lead to a delay to providing services. The Guidance will need to acknowledge the current pressure on services and manage expectations on delivery.
Recruitment and retention in the social care workforce is a particular pressure and the guidance should include reference to this and highlight ways to address this.
The availability of suitable local service provision may also present a barrier to delivery.
It will be important for the guidance to acknowledge that not all people with Down's Syndrome will have care and support needs.
Are there good practice examples of what works best to meet the adult social care needs of people with Down’s syndrome you would like to share?
Yes, please see list at the end of this submission.
Do you think people with other genetic conditions benefit from the same adult social care services used to support people with Down’s Syndrome?
Yes – social care services are provided on personalised needs not condition. However, there may be need for a specialist provision that may not be available in the persons are locally. It would be helpful to have a fuller understanding of the care needs of both people with Down's Syndrome and other genetic conditions. Examples of good practice would be helpful to support the guidance.
Do you think there are differences in adult social care needs of people with Down's syndrome and other genetic conditions?
The guidance needs to reflect adult social care practice. Adult social care does not assess people against a specific condition. Adult social care assesses people against their abilities to undertake activities of daily living and other identified care needs. There is an emphasis on building strengths, linking with their own networks of support, and not emphasising deficits. The person is at the centre and support is available to enable people to have as much choice and control over their care and support as they wish. People with Down's Syndrome will have individual needs related to their specific situation as opposed to a generalised list of needs. The guidance should refer to the Think Local Act Personal framework Making it Real as a recommended approach.
Additional information on other genetic conditions would be helpful to include in the guidance, such as likely presenting characteristics, health, and care issues.
In terms of council social care provision, people with other genetic conditions will likely be assessed by the same Children and Adult social care teams as people with Down's Syndrome. The guidance will need to clarify if it applies solely to people with Down's Syndrome or people with other genetic conditions. It will need to specify the conditions that it applies to.