Bills and legislations consultations parent carer forum guidance

Proposed changes to the Mental Capacity Act 2005 Code of Practice and implementation of the Liberty Protection Safeguards

Policy briefing for parent carer forums

The Government are consulting on the proposed changes to the Mental Capacity Act 2005 (MCA) Code of Practice, which includes guidance on the new Liberty Protection Safeguards (LPS) system. The consultation is also seeking views on the LiPS regulations, which will underpin the new system.

You can access the consultation here.

This is a joint consultation published by the Department of Health and Social Care (DHSC) and the Ministry of Justice (MoJ).

The LPS will apply to people over the age of 16, and the Department for Education (DfE) has been involved in the development of this new system.

What is Mental Capacity?

Mental capacity is the ability to make decisions.

This could be small decisions like what we eat or the clothes we wear, or could be much bigger decisions, for example where we live and who we live with.

The Mental Capacity Act (MCA) sets some important key principles. 

  • The starting point should be that a person must be assumed to have capacity unless it is established that they lack capacity.
  • A right to support in making decisions: “A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.” The right to make unwise decisions: “A person is not to be treated as unable to make a decision merely because he makes an unwise decision.”
  • Capacity is based on a single decision at a single time, so some people may have fluctuating capacity, meaning they can decide one day and not the next depending on their wellbeing. Therefore, this needs to be taken into consideration when assessing capacity and considering a time when someone is likely to be at their most able to make a decision.

Provision is made in the Children and Families Act to deal with this.

Under the Act, lacking mental capacity has the same meaning as in the Mental Capacity Act (MCA) 2005.

The Mental Capacity Act 2005 sets out what should happen when people are unable to make one or more decisions for themselves. It clarifies the roles that different people play in decision-making, including family carers.

Children under 16

For children under 16, the Mental Capacity Act does not apply.  Instead, a child needs to be assessed whether they have enough understanding to make up their own mind about the benefits and risks of treatment – this is sometimes termed ‘Gillick competence’ and means that the child has the competency to give consent and make decisions. The term ‘Gillick’ competence is usually used when considering medical treatments.

What is Deprivation of Liberty Safeguards (DoLS)?

The Deprivation of Liberty Safeguards (DoLS), referred to as ‘safeguards’ are part of the Mental Capacity Act (2005). They aim to protect people in care homes, hospitals, and the community from being inappropriately deprived of their liberty or that the appropriate process is followed if the person does not have capacity and is being deprived of their liberty. 

When considering a deprivation of liberty for a 16- or 17-year-old, where the young person lacks capacity to consent themselves to arrangements which meet the ‘acid test’ for deprivation of liberty (i.e., under continuous supervision and control and not free to leave), it is not sufficient for parents to consent to this arrangement. In such circumstances the Court of Protection will often need to approve such an arrangement.

It is recognised that in most situations, providers and families are working in the best interest of a young person. Often when a young person is deprived of their liberty, it is usually with the purpose to safeguard them from harm or harm to others. However, when considering any action, for example preventing a young person from leaving a home, thought should be given to what is the least restrictive option for the young person, whilst keeping them safe.

What are Liberty Protection Safeguards?

The Liberty Protection Safeguards were introduced in the Mental Capacity (Amendment) Act 2019 and will replace the Deprivation of Liberty Safeguards (DOLs) system. The UK government is now consulting on draft regulations which will underpin the new system.

It is envisaged that the new LPS will provide a more streamline system to manage any deprivation of liberty. The implementation of these new arrangements has been delayed and so far, there is no confirmed date when they will be introduced. Therefore, the present arrangements will remain in place for the near future.

When introduced the Liberty Protection Safeguards will provide protection for people aged 16 and above who are or who need to be deprived of their liberty to enable their care or treatment and lack the mental capacity to consent to their arrangements.

People who might have a Liberty Protection Safeguards authorisation include those with autism and learning disabilities who lack the relevant capacity.

What does this mean for forums?

  • Forums should make their members aware of the proposed changes.
  • Forums may wish to respond to the consultation or share their views with the NNPCF Consultation & Policy Lead to inform the NNPCF response.
  • Forums should be aware of the how mental capacity is assessed and decision making supported in their local area for young people with complex needs.
  • Forums should consider how this may affect the education and wider outcomes children and young people with complex needs are achieving.

Bills and legislations Parent Carer Forums

Down Syndrome Bill update April 2022

Article updated 02/05/22

What is the Down Syndrome Bill?

The Down Syndrome Bill is a private members bill sponsored by Dr Liam Fox MP and Baroness Hollins. The purpose of the Bill is to “Make provision about meeting the needs of persons with Down syndrome; and for connected purposes.”

The Bill stipulates:

”(1) The Secretary of State must give guidance to relevant authorities on steps it would be appropriate for them to take in order to meet the needs of persons with Down syndrome in the exercise of their relevant functions.

(2) Relevant authorities must have due regard to the guidance in the exercise of their relevant functions.

(3) Before giving the guidance the Secretary of State must consult such persons as the Secretary of State considers appropriate.

(4) The Secretary of State must publish the guidance in such manner as the Secretary of State considers appropriate.”

The Bill then stipulates what are relevant authorities; they include any public body that might provide services or support to people with Down Syndrome, except for welfare benefits.

Progress through Parliament

On 1 April 2022, the Bill passed the third reading in the House of Lords. As there were no amendments, the Bill is now in its final stages and will receive Royal Assent before the end of the current Parliamentary session, thereby becoming law – the Down Syndrome Act 2022.

The DS Bill is supported and championed in Parliament by 43 MPs and Lords who form the All-Party Parliamentary Group (APPG) on Down Syndrome. Their current five priority areas are:

• maternity care

• education

• employment

• social care

• health care/research

Next Steps

It is expected that the statutory guidance to relevant authorities will be laid before Parliament in Spring 2023.

The National Down Syndrome Policy Group (NDSPG) support people with Down syndrome to have a say in the formation of policy in matters that impact their lives. NDSPG supporting bodies include 39 national and local organisations including Mencap, Down Syndrome Education International, Positive About Down Syndrome (PADS).

The NDSPG is one of several organisations that will be involved with the open consultation.

The Department of Health and Social Care (DHSC) will facilitate the open consultation.

The consultation mandated by the Bill will inform the statutory guidance. This includes input by adults with Down Syndrome.

The Down Syndrome Association, who are committed to improving the quality of life for people who have Down syndrome, will be submitting their own response. You can find further information on their website:

Details on how to get involved with the DHSC consultation will shared once published.

What does this mean for forums?

  • Forums should be aware of the Down Syndrome Bill and make their members aware of the proposed changes.
  • Forums may wish to respond to the consultation on statutory guidance (when published) or share their views with the NNPCF Consultation & Policy Lead to inform the NNPCF response.
  • Forums may wish to look in more detail at examples of good practice elsewhere and work with partners to develop a Down Syndrome pathway and improve local and practice and services.

Further information

The Down Syndrome Bill

The National Down Syndrome Policy Group

All Party Parliamentary Group – Down Syndrome

Bills and legislations NHS England Social Care

Lords concludes examination of Health and Care Bill

The Health and Care Bill was introduced to Parliament in July 2021 and will place Integrated Care Systems (ICSs) on a statutory footing. ICSs are the structures through which NHS organisations, in partnership with local authorities, will take joint responsibility for improving the health and wellbeing of the population they serve, including children and young people.

As part of our policy work, the NNPCF are a member of the Health and Policy Influencing Group (HPIG). HPIG is leading the children’s sector’s activity on the Health and Care Bill, working with civil servants and parliamentarians to push for a greater focus on babies, children and young people in the legislation and supporting guidance.

The Government has made important commitments in Parliament that babies, children & young people will be an integral part of Health and Care Bill.

The Bill has now had its third reading, a chance to make sure the eventual law is both effective and workable.

The NNPCF welcomes the amendments tabled which include:

  • A requirement for Integrated Care Boards (ICBs) to create joint forward plans that include children and young people
  • Guidance that stipulates that ICBs must identify an executive lead for SEND and safeguarding and also appoint a children and young people’s executive lead
  • Guidance for Integrated Care partnerships strategies to specifically consider children and young people and for them to consult with CYP leaders and families.

These provisions support some of the requirements for joint planning across local areas outlined in the SEND Green Paper.