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.
- 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 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.
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.
LGA: Supporting adults with a learning disability to have better lives framework
GOV.UK: Building the right support for people with a learning disability and autistic people
NDTi: Preparing for adulthood tools and resources
NHS England: Personal health budgets for people with a learning disability or autism or both
Down's Syndrome Association: Paying-for-support