Down Syndrome Bill, Second Reading, House of Lords, 18 March 2022

The LGA supports the aims of the Down Syndrome Bill, which would create a new duty on the Secretary of State to issue guidance to relevant authorities (health, education and local authorities in respect of social care and housing) on how to meet the specific needs of people with Down syndrome; and for relevant authorities to have due regard to the guidance in providing services.


Key messages

  • The LGA supports the aims of the Down Syndrome Bill, which would create a new duty on the Secretary of State to issue guidance to relevant authorities (health, education and local authorities in respect of social care and housing) on how to meet the specific needs of people with Down syndrome; and for relevant authorities to have due regard to the guidance in providing services.
  • Any new statutory duty in the Down Syndrome Bill will need to be accompanied by new funding in line with the New Burdens Doctrine. We are therefore pleased to have had confirmation from the Department for Health and Social Care (DHSC) that new guidance will be formed in consultation with partners, including local government, and a new burdens assessment will be undertaken ahead of finalising any guidance.
  • It would be helpful for any new guidance to include information that helps councils and the NHS understand the needs of those with Down syndrome and what effective support would look like. However, we would be concerned about any guidance which creates a differential level of access/eligibility for support compared with other groups of people with a learning disability, as the duty on local authorities regarding assessment under the Care Act 2014 is to assess people based on need, not diagnostic categories.
  • Councils already play a key role in supporting people with Down syndrome to help them live the lives they want to lead, including through their social care functions and their work with partners, particularly the voluntary and community sector and schools. 
  • While we support the aims of the Bill, the financial pressures facing adult social care and support for children with special educational needs and disabilities (SEND) must be considered with regard to the additional duties set out in the Bill.
  • In December 2021, the Government published it Adult Social Care Reform White Paper People at the Heart of Care, which follows on follows the September 2021 publication of Build back better: our plan for health and social care which set out a range of measures, including reforming the way adult social care is paid for and funded. The White Paper set out a positive vision for adult social care, but of the £36 billion the new UK-wide health and social levy will raise over the next three years, only £5.4 billion is to be ringfenced for social care in England. As councils plan their service budgets from April, many are increasingly concerned that the funding allocated for reform falls far short of the likely costs involved.
  • Furthermore, the number of children and young people with Education, Health and Care Plans (EHCPs) has risen year on year for the past decade, with an 11 per cent rise in the last year alone. The Government must therefore urgently complete its ongoing review of the Special Educational Needs and Disability (SEND) system, setting out reforms that increase mainstream inclusion, provide councils and schools with long-term certainty of funding to meet the needs of all children with SEND, and give councils the power to hold education and health partners to account if their provision for identifying and supporting children with SEND is not adequate.
  • We would encourage the Government to look at formulating a new national learning disability strategy. It has been 13 years since the last strategy, Valuing People Now, was published. While those living with Down syndrome may face specific health challenges, people with other learning disabilities also face health inequalities, which have been further exposed by the pandemic. For instance, as highlighted in the LGA’s Health Inequalities Hub, data of COVID-19 deaths of patients with a learning disability from LeDeR and the Office for National Statistics (ONS) shows that in every week since the end of November 2020, people with a learning disability have died from COVID-19 disproportionately compared to the general population. A new strategy for all those people with a learning disability could help towards the Government’s goal to tackle the core drivers of health inequalities.

About the Down Syndrome Bill

The aim of the Down Syndrome Bill is to ensure that certain health, education, and local authorities take account of the specific needs of people with Down syndrome when exercising their relevant functions. This builds on the government’s stated commitment to improve outcomes for people with a learning disability.

Current government policy focuses on recognising and addressing the inequalities and premature mortality faced by all people with learning disabilities including those with Down syndrome. Government policy does not typically differentiate between different parts of the population except where there is clinical justification (for example adults with Down syndrome were identified as being at far greater risk of severe outcomes from COVID-19 and identified as Clinically Extremely Vulnerable).

The evidence indicates that people with Down syndrome face specific challenges. The Bill seeks to address these by ensuring that relevant authorities will have clear guidance on appropriate steps for them to take to meet the needs of people with Down syndrome in executing their existing relevant functions. The guidance will also help individuals with Down syndrome and their families to have a clearer understanding of what they can expect and what they are entitled to receive.

Adult social care

  • Investment in adult social care is an investment in all of us, enabling people with Down Syndrome they want to lead, contribute to society and in turn strengthen our local communities.
  • Whilst we are supportive of the introduction of a cap on care costs and other reforms, we have previously raised our concerns about the adequacy of the announced £5.4 billion for social care through the new Health and Social Care Levy. The Autumn Budget and Spending Review 2021 did nothing to allay those concerns and we are troubled that only £200 million is available in 2022/23 to support reform implementation, particularly if that includes the commitment to move towards councils paying a fair rate of care.
  • Of the £36 billion the new UK-wide health and social levy will raise over the next three years, only £5.4 billion is to be ringfenced for social care in England. As councils plan their service budgets from April, the LGA said many are increasingly concerned that the funding allocated for reform falls far short of the likely costs involved.
  • The introduction of a ‘fair rate of care’ that councils will pay providers and tackling the issue of self-funders paying more for their care than those who access support at the council rate will be particular issues going forward.
  • Without adequate funding to deliver these proposals, we have highlighted that some councils will face a battle to balance budgets, worsening existing pressures and running the serious risk of impacts on the ability to deliver timely and quality care to those who draw on it.
  • Adult social care would still face a funding gap for current services, increasing each year due to inflation and other costs even with these reforms fully funded. This is without considering the immediate need to address unmet and under met need on these overburdened systems. Adding unfunded reforms to an ongoing financial and service delivery crisis would be catastrophic for social care.
  • Alongside adequate funding to meet the ambitions in the reforms, councils also need urgent clarity on their detail. The LGA is calling for government to work closely with councils on detailed costings and publish at the earliest opportunity its consultation on the associated guidance.

Special educational needs and disabilities (SEND)

Department for Education (DfE) figures show that over 430,000 children and young people have an Education, Health and Care Plan (EHCP) in England as of January 2021, an increase of 11 per cent or 60,000 over the previous 12 months alone and the number of children and young people with an EHCP has increased in every year since the Children and Families Act became law in 2014 and prior to that, as far back as 2010. In addition, LGA research suggests that the increased scope of council responsibilities post-16 was the most commonly cited factor contributing to rising demand and costs for councils. The post-16 cohort now accounts for 23 per cent of EHCPs and around 17 per cent of spending. This is an area that will continue to grow as successive cohorts move through the system. Furthermore, the percentage of councils that are overspending their home-to-school transport budgets has increased from 71 per cent to 83 per cent between 2014/15 and 2017/18.

While we were pleased that DfE has recognised the challenges that councils are facing in delivering SEND support, with the allocation of an additional £780 million for high needs budgets in 2022/23, we called for the Spending Review to provide councils with long-term sufficiency of, and certainty over, funding to support children with SEND, including a commitment to write off councils’ existing High Needs Block deficits which we estimate to be worth around £600 million. It was therefore disappointing disappointed that the Government did not take the opportunity to write off councils’ historic High Needs Block Deficits. However, the £2.6 billion for school places for children with special educational needs and disabilities was welcome. This funding will help councils provide places locally, rather than children having to travel to get the support they need.

The 430,000 children and young people who already have an EHCP will continue to be entitled to support up to the age of 25, meaning that these costs are ‘baked in’ for councils and partners. The DfE will need to ensure sufficient high needs funding is made available to support these children and young people as they work their way through the system, irrespective of the outcome of the SEND review and the shape of a reformed SEND system. 

The Government must now urgently complete its ongoing review of the Special Educational Needs and Disability (SEND) system, setting out reforms that increase mainstream inclusion, provide councils and schools with long-term certainty of funding to meet the needs of all children with SEND, and give councils the power to hold education and health partners to account if their provision for identifying and supporting children with SEND is not adequate.

The LGA recommendations for the SEND review include:

  • Schools should take more financial responsibility for supporting children and young people with SEND and not just pass responsibility to councils. This could be done via a top-slice of High Needs Block funding going to groups of local schools to allow them to commission additional SEND support. For this to work, councils will have to have levers to hold the school groupings to account both for improved outcomes for children and young people and which reduce the use in out-of-area and specialist provision.  
  • We’re supportive of an approach that raises levels of mainstream inclusion and provides more clarity to parents on the shape of the mainstream offer. Where there is still a need for councils to commission services from independent and non-maintained special schools for some pupils, alternative commissioning arrangements, including regional consortia, should be used that will allow for the purchase of multiple places and drive down costs for individual councils. 
  • Where there are cases going to SEND tribunals, tribunal judges should take account of the ‘public purse’/value for money when making decisions. Some councils have developed, or are using, independent mediation to reduce the use of tribunals and would like the DfE to consider whether all councils should be funded to provide such a service. 

Contact

Laura Johnson, Public Affairs and Campaigns Adviser

laura.johnson@local.gov.uk