LGA Submission to the Down Syndrome Act Guidance: call for evidence

Any new requirements arising from implementation of the new Act and outlined in the guidance will be new burdens for councils and will need to be funded accordingly. This could include training costs.


About the Local Government Association

The Local Government Association (LGA) is the national voice of local government. We are a politically led, cross party membership organisation, representing councils from England.   

Our role is to support, promote and improve local government, and raise national awareness of the work of councils. Our ultimate ambition is to support councils to deliver local solutions to national problems.

Key messages

  • The LGA supports the Down Syndrome Act and welcomes the publication of guidance for relevant authorities, including councils, on the steps it would be appropriate for authorities to take to meet the needs of people with Downs syndrome.
  • The guidance needs to state whether it applies to people with other genetic conditions.
  • The guidance should clearly set out any specific recommendations for councils.
  • Any new requirements arising from implementation of the new Act and outlined in the guidance will be new burdens for councils and will need to be funded accordingly. This could include training costs.
  • The act and guidance will need to align with duties under existing legislation in particular the Care Act 2014, the new Mental Health Act and the Children and Families Act.
  • guidance should have clear links to social work education and continuing professional development.
  • The guidance should promote positive working across partners, particularly integrated health, and social care arrangements. It should include a preparing for adulthood section.
  • The guidance should include a list of national resources and examples of good practice.

Questions about adult social care

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.     

Questions about housing

What support would a person with Down’s syndrome need to help them live independently in their own home?

The guidance should reflect the diversity of abilities and needs of people with Down's Syndrome. Support is dependent on personalised needs and will vary. For instance, some people will need significant support in all aspects of daily living whilst many people will need minimal support or support needs may arise over time.

The guidance should have a specific section on the care and support needs of carers. This should outline what carer support services may be available.    

The guidance should state that local authorities have a responsibility to support, safeguard, care for and house vulnerable members of their community. The provision of supported housing is vital to ensuring people with Down's Syndrome live in suitable homes that meet their personal and all-round housing, health, and care needs.

Do you think there are barriers in accessing housing support services for people with Down’s syndrome?

Research has shown that there is a large unmet need for this type of accommodation for people with Down's Syndrome. Further research on the reasons why and examples of good practice in accessing support would be helpful.

Could other people, such as those with other genetic conditions benefit from the same housing support services used to support people with Down’s syndrome? Do you think there are differences in the housing support needs of people with Down’s syndrome and other genetic conditions?

It would be helpful to have a fuller understanding in the guidance of the housing support needs of both people with Down's Syndrome and other genetic conditions. Many people with a variety of learning disabilities live in supported housing and many people with Down's Syndrome live in shared accommodation with people with other learning disabilities. Housing suitability is dependent on an individual’s needs and connection with their local area. Examples of good practice in housing for both people with Down's Syndrome and other genetic conditions would be helpful to support the guidance.

Questions about the Downs Syndrome Act guidance

Other than health, social care, education, housing, and youth offending, which other public services should, in your view, be considered for adding into the guidance?

Welfare benefits, Criminal justice system. Voluntary and Community Sector advice, advocacy,  support and provision services.

Do you think there are barriers in providing physical health services for people with Down’s syndrome?

Awareness of the impact of ageing on people with Down's Syndrome needs to be raised across all services. The guidance should have clear, evidenced based information on the impacts that will be relevant to all services.

Age eligibility may be an issue. Services that rigidly adopt an over 65 approaches to eligibility will unfairly exclude this group from services they need. It’s important that people with Down's Syndrome can access services at the age they are needed, whatever age that might be. The guidance needs to reflect the need to personalise the service offer for this group rather than taking a one size fits all approach.

Research has shown that on average, people with a learning disability and autistic people die earlier than the general public, and do not receive the same quality of care as people without a learning disability or who are not autistic. The guidance should have a section on the LeDeR review process.  LeDeR reviews deaths to see where there are areas of learning, opportunities to improve, and provides examples of good practice.

Mental Health

What would be the most helpful things to include in the guidance for organisations providing mental health support to people with Down’s syndrome and their families and carers?

Understanding of common mental health conditions and how these may present with people with Down's Syndrome. Further information on identifying co-occurring mental health conditions and how best to support would be helpful.  

Guidance will need to include information on the new Mental Health Act and its duties that relate to people with learning disabilities and autism.

Fuller research and data on Down's Syndrome and mental health would be helpful to include in the guidance.

Do you think there are barriers in providing mental health services for people with Down’s syndrome?

Yes, lack of personalisation can be a challenge - specialist service provision appears to be extremely limited.  A fuller understanding of how a mental health condition might present in someone with Down's Syndrome and treatment options/approaches.  For instance, examples of good practice in working with people with Down's Syndrome who have depression or anxiety.

Further research or data on mental health and people with Down's Syndrome would be helpful to include in the guidance.

Resources