Why is being heard and included in decision making processes important?

Being able to communicate our needs, wishes and feelings is important for our sense of identity and our wellbeing. Making meaningful choices and developing friendships with the people we chose enables us to feel valued and increases our confidence and self-esteem. Conversely a lack of choice and control over our daily lives can lead to frustration and have an adverse effect on our emotional and mental health. This is no different for people with Down’s syndrome.

Providing support that protects a person’s wellbeing involves listening and responding to all forms of communication – this means understanding challenging behaviour as a means of communication.  There is evidence that good support can improve quality of life, and for those who display challenging behaviour, good support can reduce these incidents. The link between communication skills and challenging behaviour highlights a need to find creative ways of communicating with people who have difficulty expressing their needs and wishes.

You’ll find more information as well as practical tips for supporting a person’s mental wellbeing here.

What does good support look like?

Good support is responsive to the needs and wishes of the individual.

The level of engagement a person is able to contribute to planning their support will be different depending on their individual needs. Some people with complex needs may have family and people who know them well taking the lead in designing their support, based on what they know of the person’s interests, likes and dislikes. Others who are more able to communicate their needs and aspirations are likely to be able to have more influence over planning their own support.

Whatever the person’s ability they should be at the centre of the support planning process and as much weight as possible should be given to their wishes.  If the supported person is not the ‘decision maker’ this must be because they have received appropriate support to understand their options but despite this have been found to lack mental capacity. The decision made by others on the person’s behalf must be in the person’s ‘best interests’.

You can find more information about mental capacity and decision making here.

Good support involves treating the person with dignity and providing opportunities to develop meaningful relationships with friends, family and the professionals who support them. Fostering positive relationships can help people fully understand the person’s needs and can result in the discovery of new information about the person’s aspirations and the ways in which they wish to be supported. Good support also facilitates people to develop their independence by providing opportunities that advance their existing skills and enable them to work towards their goals.

For some people, planning the support they need may involve input from specialist professionals. Learning Disability Teams accessed via social care or through the person’s GP consist of a range of professionals including clinical psychologists and psychiatrists who have expertise in understanding and assessing people with learning disabilities. Speech and language therapists and occupational therapists may also be involved to help people and their supporters find effective ways of communicating with each other.

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What is “person centred planning”?

There are many buzz words for having choice and control over one’s own life.  Some examples are “person centred support”, “self-determination”, “co-production”, “self-directed support” and “personalisation”. Essentially this just means using approaches that facilitate people to recognise and communicate their needs, feelings and wishes and empower them to make decisions about their lives and the support they want and need to reach their goals.

The main objective of person centred support is to bring about positive changes in a person’s life through empowering them to take control of their own life and facilitating them to develop their independence.

A good starting point is to look at a person’s life as it is now and how they would like it to be in future so a plan can be made that enables the person to be supported to work towards short, medium and long term goals.

Many aspects of a person’s life will need to be explored when planning effective support. For example, the person’s aspirations around:

  • Family, friends and relationships
  • Day-to-day activities
  • Involvement in community life
  • Health
  • Housing
  • Education, training and employment

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How do we go about supporting in a person centred way?

There are many methods and planning tools that can help the person and their supporters identify the person’s needs, explore their aspirations and plan their lives and their support.

Multimedia advocacy Multimedia advocacy is the use of technology to support people to express themselves through the use of pictures, words, video and sound. This approach can be a powerful way to facilitate people including those with complex needs to be involved in planning and decision making processes. This approach can be used alongside the other approaches mentioned below. You can find more information about this here.
Circles of support Circles of support are a group of people selected by the supported person who meet regularly with the person to help them identify their aspirations and support them to plan their life and achieve their goals. The supported person should decide what they want to talk about and should be the focus. People with complex needs will usually require more support to ensure the circle meetings focus on them and their aspirations. This video has more information and feedback on using a circle of support.
Maps Maps can be a helpful tool for people to use with their circles of support. Maps can help discover more about the person, their history, their likes and dislikes and their strengths and talents. This information can be used to develop an action plan that will support the person to build a life that focuses on their strengths and interests. Watch this video for more thoughts on using maps and click here for more information about mapping.
Pathway plans Pathway plans can help to discover more about the person and their hopes and dreams for the future. They involve looking at the persons dreams and identifying goals related to the person’s dreams that are possible and achievable. The plan then breaks down the main goals into small achievable steps and highlights the things that need to happen to reach each step. The plan details the support the person will need and from whom with dates of when each step will be achieved. You’ll find more information about pathway planning in this video or click here for further written information.

One page resources

You can also find a range of one page planning resources that can help with planning good support. For example, the ‘what’s working/not working’ resource can highlight where changes need to be made in the person’s support.

The DSA has produced a resource titled ‘My Needs Assessment Booklet’. This resource is designed to help people with Down’s syndrome to voice their aspirations and prepare for a Needs Assessment with their local authority.  You can download this resource, as well as others in our social care series from here.

Whichever methods are used to support the person to plan their life, regular reviews of their support and the progress they are making will help to ensure their support is responsive to their changing needs as their life develops. If the person is receiving social care support there is likely to be an annual review. It is well worth spending time with the person in advance of this meeting preparing for their review to identify what progress they have made and to identify what goals they would like to achieve going forward.

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More DSA Resources

My Voice My Community was the theme of Awareness Week 2017.
‘People with Down’s syndrome have something to say. They want to be heard. Their opinions count.’ 

The resources include films of people with Down’s syndrome who express themselves in many different ways. They used the worksheet ‘What I want people to know about me’, which is part of the easy read information about Needs Assessments. You can download this booklet here.

The pack of resources for download, for people with Down’s syndrome to use, include:

There are 15 resources for people with Down’s syndrome in the Living the Way You Want Series, all in Easy Read. These booklets can be useful tools to help families and their family member with Down’s syndrome think about what they might like to happen in the future.

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Further Resources

You can find more transition planning resources for young people in this series of videos.

There are example pathway plans to help young people through transition from year 9+ plan for their future employment, housing, health, friendships and relationships and community inclusion here.