Written evidence submitted by The Down's Syndrome Association

The Down’s Syndrome Association

The Down's Syndrome Association is a national charity focusing on all aspects of life for people who have Down’s syndrome. Established in 1970, we have over 50 years’ experience of supporting people who have Down’s syndrome, their families and carers, and professionals working with them.  We have around 20,000 members throughout England, Wales and Northern Ireland. The Association provides direct support to 70 affiliated local support groups, and a range of professionals from different agencies. The overarching aim of the organisation is to help people who have Down’s syndrome lead full and rewarding lives. 

We have a commitment to inclusive participation and work closely with a diverse group of individuals who have Down’s syndrome called “Our Voice”, who come together regularly to help shape and inform our work.

Introduction

Access to sports and physical activities are extremely important for children and adults who have Down’s syndrome. As well as the benefits of sporting activities for developing friendships and simply having fun with peers, it is vital that people who have Down's syndrome access some kind of physical activity for health reasons. There is evidence that people who have Down’s syndrome do not always meet recommended minimum levels of daily exercise or physical activity[1]. However, recent research has found that exercise in the form of walking for even 30 minutes a day for at least three times a week over an eight-week period, has shown positive and life changing responses[2].

Despite this clear need for exercise, we also know that people with Down’s syndrome increasingly struggle to find suitable sporting activities and sessions which suit their needs. The DSA’s own research found that 76% of parents/carers said that their loved one with Down’s syndrome was not very active before they started attending sessions we organise through our DSActive programme[3], with the vast majority saying that there were no other suitable provisions in their area aside from the DSActive session.

Community sport

1. What is the current quality and availability of facilities for grassroots sport?

• What interventions are needed to improve this provision?

No comments.

2. What sources of funding are available for grassroots sport and are they sufficient?

• How can funds be distributed more effectively and application processes be improved?

No comments.

3. How can volunteers be better supported and what is needed to attract and retain more volunteers to grassroots sport?

In order to ensure volunteers supporting children and adults with disabilities to effectively access sports it is vital that they are provided with accessible, up to date and relevant training and education.

There is a worry that volunteers are not valued as highly as paid coaches and staff and so may miss out on opportunities for support and training, especially where there is limited capacity or funding. Many volunteers have a wealth of invaluable experience, and some are qualified coaches with significant expertise, however as they don't always identify beyond the word 'volunteer' there is a risk that they can be overlooked and sometimes dismissed from opportunities that could be available.

Because there is sometimes this sense of perceived hierarchy between paid and non-paid staff, those who are paid can often be seen as the ones entitled to training opportunities whilst volunteers, despite being key members of the team providing support and activities, may not find out or become informed about relevant training opportunities they would benefit from (and which are vital for the running of inclusive sessions). It would be beneficial to develop a national platform/service that has a responsibility for providing key information and resources to sports organisations about support for volunteers regarding key national/local disability organisations working on sports that can offer training, resources and support specifically on disability and inclusive participation.

It is vital that volunteers feel confident in their role. Good organisation of volunteer cover at any organisation and in individual sessions should enable all volunteers to work within a clearly defined role, to ensure they know what is expected of them and that they are confident in undertaking their specific role – this is particularly important when there are participants who have a disability and/or specific needs. Without this planning, preparation and clarity, volunteers can often feel uncertain and underprepared for what is expected of them and can ultimately lead to the demise of a session and can have a huge impact on attendees who may feel disappointed, left out and reluctant to engage further. Most importantly, the key impact of prepared, well-trained and confident volunteers who are valued by their organisations is felt by the participants of sessions being delivered by them.

Clearly defined roles alongside a clearly defined timetable of volunteering duties and responsibilities can only be achieved if volunteering levels and other staffing levels are appropriate. In addition, we have found that there can be a perceived understanding that sessions that include people with disabilities will always be ‘more challenging’ and without proper training and understanding these low expectations can lead to a volunteer having a reduced expectation of the success of a session. Poor staffing can also lead to an overreliance on volunteers who are often balancing other time commitments. Good volunteering and staffing levels are essential for the success of a session.

4. How can grassroots sport be made more engaging and accessible to under-represented groups?

Despite improvements and progress made in recent years, there is still a need for greater disability awareness within sports sessions, as well as better expertise in effective inclusive practices when coaching and and communicating with a diverse range of participants. We hear of many sessions which are now successfully meeting the individual needs of participants who have issues with their sight or hearing, exercise tolerance or cognitive ability, but we feel there is more to be done to also meet the needs of a participant with a learning disability such as Down’s syndrome.

It is vital that regular and ongoing specific and specialist training on working with people who have Down’s syndrome is available to staff and volunteers working in sports activities. As part of our DSActive programme, our free, online training is relevant for providers of leisure, recreational and sports activity sessions, such as Scout groups, sports clubs, drama groups and craft clubs etc. These sessions provide an understanding of Down’s syndrome as well as allowing participants to explore how best to overcome barriers and open doors to the participation and inclusion of children and adults who have Down’s syndrome in their activities. Appropriately trained staff should also result in organisations and activities which embed principles of inclusive participation into their practice. Participants should always feel safe, valued and welcome, and a zero tolerance for discrimination or bullying is an important part of this.   

Session design must be mindful of the many and varied needs of participants. Adapted activities should be a possibility for all and are an important consideration for people who have Down’s syndrome. Sessions should include the use of accessible equipment when relevant, for example the availability of communication aids such as whiteboards, strong visual aids and appropriate coloured and sized equipment.

To fully include all participants, it is important that sessions should offer the opportunity for non-competitive pathways as well as competitive, acknowledging the benefits of participation over that of competition and competitive achievement. Wherever possible, role models or ambassadors should be used that reflect all those that organisations want to participate in their sessions. They should build trust and promote involvement by having representatives that are truly representative. Aspiration is important but individuals and families also want to see people just like them – often focusing on having fun and keeping fit, rather than winning cups or completing marathons. Meaningful and continued representation of the inclusion of people who have Down’s syndrome can be hugely impactful for a larger number of people than a one off, exceptional achiever campaign.

A sense of belonging and community is important. People with disabilities are often used to their family/carers or friends being more involved with their lives, at school or at church or work etc. Support is often provided as needed and this can be appropriately put in place in sessions through the development of family friendly sessions and making it a priority to facilitate excellent relationships and communication channels with participant’s families/carers.

The location and timing of sessions also requires additional and specific consideration. A session that is indoors is likely to attract more families than an outdoors option, especially during times of adverse weather conditions. When planning sessions that take place in colder months, organisers need to consider and be mindful of the increased incidence of colds/congestion amongst younger participants and the ongoing challenges with immunity. Also, wet and uneven surfaces can be a challenge too far for those with hypermobility or low tone. Appropriate changing and toileting facilities must be considered the norm when engaging with participants with additional needs; entirely unsuitable options, such as the use of a cleaning cupboard, should never be considered appropriate. These are just two examples of how services need to look at the different considerations needed to ensure participants with additional needs are engaged and supported during sessions. It is also vital that sessions need to be developed and offered over long-term periods – this will help facilitate individuals and their families establishing a routine of activities (and the support for people to attend).

School sport

5. How can schools better enable children to develop positive and life-long relationships with sport and physical education?

• What can be done to engage groups with lower participation rates - such as girls, those with disabilities or from lower socio-economic backgrounds?

Early exposure in schools is key to children and adults maintaining a positive relationship with physical activity and sport. Home circumstances may not support this, and so school may provide the only opportunity to experience positivity around physical activity and sport. Therefore, it is especially important in school settings that there is a focus on enjoyment rather than performance and competition. Early exposure to physical activity that is fun is essential as a positive lifelong relationship is likely to be based on early experiences at school. Furthermore, negative experiences linked to ‘losing’ or being mocked for different abilities are likely to put off children and young people from engaging further in these activities. In reducing the focus on performance, schools could be looking to introduce activities that are non-competitive and can be participated in as children get older such as dance, yoga and swimming.

In addition, schools can use a varied programme of activities to champion the participation in life skills based physical activities such as gardening and dog walking. These can be used as a positive stepping stone to participation in other physical activities and sports. Schools could also introduce other types of sports not seen as mainstream such as boccia and martial arts which are more inclusive. Schools are in the unique position to really instill and provide motivation for children to understand the importance and enjoyment of physical activity in ways relevant to themselves, building the blocks for life-long engagement with such activities.

Schools must provide opportunities from an early age, and then throughout school, for children to be actively involved in the development of their own specific relationship with physical activity and sport. This can be done by providing them with opportunities to make active decisions themselves (for example which sport/activity they engage in) as well as building in the expectation and processes of providing personal feedback regarding their different aspects of their participation.

It is important that appropriate training of school staff providing sports and activities must include disability awareness, as it is vital that activities are provided with an understanding of where appropriate adaptation of activities, equipment and lesson structure are implemented.

A key element to engaging students with additional needs in sporting activities at school is through an inclusive and positive school attitude and culture. Schools should be promoting inclusion across all activities and be offering a range of activities that are suitable for all the learners in their setting. One aspect of this could include liaising with disability experts on good practice and staff development, another is to ensure when looking at sports there are examples of inclusive role models from an early age. This positive school culture should extend into all school-based activities to include pre-planning for sports days and their inclusive practice being reflected in after school and extracurricular activities. A further step in such a culture should see schools looking to embrace opportunities within the wider community, developing and fostering positive relationships and networks with suitable activity providers within their locality who effectively support inclusive participation.

6. How should schools and sports organisations work together to deliver better sporting opportunities for children in and outside of school hours?

No comments.

7. What measures are needed to make the pathway from school to community sport easier?

No comments.

Governance

8. How effective are national and local government and sport governing body initiatives in delivering school and grassroots sport, and how might they be improved?

No comments.

9. How can the Government facilitate better coordination across the sport ecosystem to deliver grassroots and school sport?

• Is the Department for Culture, Media and Sport successfully leveraging the economic and community benefits of sport and physical activity across Government?

No comments.