Down’s Syndrome Association – Written evidence (YDP0051)

About the Down’s Syndrome Association

The Down's Syndrome Association is a national charity focusing on all aspects of living successfully with Down’s syndrome. Established in 1970, we have around 20,000 members throughout England, Wales and Northern Ireland, comprising of primarily family-carers of children and adults with Down’s syndrome and a growing membership of adults who have Down’s syndrome aged 18+. We are the lead provider of information, advocacy, support and training to anyone with an interest in Down's syndrome.

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. We also employ a number of adults who Down’s syndrome who deliver a new strand of training called “Listen, Include, Respect” for organisations in how to meaningfully involve people who have Down’s syndrome in their work.

About Down’s syndrome

Down’s syndrome is a genetic condition, caused by the presence of an extra chromosome 21 in the body’s cells. The number of people in England and Wales with the condition was estimated as 37,090[1]  in 2013.

The DSAs Workfit Programme

The DSA runs ‘Workfit’ - an Employment Programme which works across England for people who have Down’s syndrome: https://www.downs-syndrome.org.uk/our-work/services-projects/workfit/ 

This is a highly focused and effective programme:

• 94% of people in paid work developed by WorkFit have retained their jobs (excluding redundancy)
• 87% of our candidates go into paid work from the start from the range of formats that we offer
• 74% of our candidates go into jobs in private sector organisations (14% public sector, 12% third sector)

We would very much welcome any further discussion or queries from this Inquiry regarding the Workfit programme, which could include speaking to work candidates, staff and current employers.

Questions in response to the Call for Evidence

General

1) What barriers do young disabled people face when leaving education and entering the job market and workplace? Does this differ between different conditions or disabilities, and if so, how?

a) How far do barriers to young disabled people accessing other public services, such as health and care services, present a barrier to young disabled people accessing the workplace?

Schools and colleges must start talking to students about working towards career options as early as possible, and certainly no later than 14. They should also be expected to source high quality and well supported work experience placements and taster sessions beyond the traditional sectors of retail, catering and hospitality and supporting with job coaches. Schools and colleges should be liaising with employers so that they can offer support with short-term taster sessions in a variety of locations and settings.

An offer of effective and practical travel training should be included in all EHCPs as part of an early approach to Preparing for Adulthood for all children with disabilities, and should be specified in their EHCP.

Barriers:

• A lack of understanding among health professionals about Down’s syndrome and the more common health conditions in this group of people
• Diagnostic overshadowing by health professionals where symptoms of illness are attributed to a person having Down’s syndrome and therefore not properly investigated
• People are less likely, or able to, self-report health issues, and more likely to be reliant on family/supporters to maintain good health even in a hospital setting
• Transport & mobility needs
• Difficulties with spoken language and communication
• Difficulties describing and locating pain/illness in the body
• Difficulties with short-term auditory memory making it harder to take in information through hearing
• Lack of knowledge about optimal treatment which may lead to more serious complications, disability or death, for example, treatment for infection and sepsis.
• Lack of meaningful travel training

Scope of the inquiry

2) We have not focused this inquiry specifically on the experiences of young people with an Education, Health, and Care plan when they leave education and enter employment. What are your thoughts on this approach, and are there particular benefits or drawbacks to it? What other focused approaches could the inquiry take?

No Comments.

Support for young disabled people

3) How effectively do education systems provide careers advice, guidance and support which meet the needs and career aspirations of young disabled people? How could this be improved, and what examples of good practice are there in the UK and abroad?

Although there have been improvements in recent years, there is a continued need for better awareness raising for professionals regarding Down’s syndrome, to ensure that there is an open and aspirational approach taken when speaking to young people about future work interests and opportunities. For a long time certain career paths were focused on (such as catering) without enough consideration of each young person’s actual interests and capabilities.

The shortage of speech and language therapy services can be a barrier for children and adults who have Down’s syndrome. Although many employers find ways to communicate effectively with a diverse range of employees, strong and consistent speech and language support in the early years can have a significant impact when entering the workforce.

a) Do staff in schools and other education settings providing careers guidance and advice have the appropriate training and resources to support the needs and aspirations of young disabled people?

They may not have details of the full range of services available, such as the DSA’s WorkFit programme.  Please also see the response to question 1

b) How do far do staff in education settings engage with employment support services and schemes such as Access to Work, supported internships, or disability employment advisors in order to support young disabled people?

No comments.

4) How far do employment support mechanisms such as Access to Work or Disability Employment Advisors meet the needs of young disabled people entering the job market for the first time? How could these services be improved?

Access to Work is a valuable support mechanism that could be even more effective if the time needed for processing applications could be significantly reduced. An extension to Access to Work would also be beneficial as people who have Down’s syndrome may not immediately be able to work for 16 hours or more per week, but this can be achieved for many with support over time. This extension would also be useful particularly in rural areas where transport is not easily accessible.

Our contact with DEA’s is limited although we have provided a number of briefings to various JobCentrePlus locations over the years and we are happy to do further sessions as requested. All our support is free of charge.

a) What is the first point that a young disabled person would engage with an employment support scheme, and how are such schemes communicated to young disabled people?

Early engagement is essential to prepare the young person for the requirements of the workplace and to help with the challenges of the transition from education to employment.  It is important to be able to share accessible case studies of other people from their peer group making a successful transition and for them to feel that their needs will be met in terms of support to help them to achieve their career ambitions.

5) What are young disabled people’s experiences of the transition from education-based support to employment-related support? Do young disabled people face barriers to accessing support during this transition? Could these services be better linked, and if so, how?

Often the end of their academic career is a cliff edge when there is no employment opportunity in development for them to transition to. Limited work experience placements should be addressed with a focus on high quality and well supported work experience placements and taster sessions beyond the traditional sectors of retail, catering and hospitality and supported with job coaches or workplace buddy frameworks.

Public services as good employers

6) How accessible are careers in public services to young disabled people when they are first entering the job market? Are there public services which very effectively recruit disabled people, and services where significant improvement is needed?

We have an excellent case study of a woman successfully transitioning to an internship in a local authority which then led a permanent job. In our experience, working with larger public bodies such as the NHS can be challenging due to the difficulties in implementing reasonable adjustments into complex recruitment processes and onerous mandatory training obligations. We have some success in the NHS of course as this short film attests: https://www.youtube.com/watch?v=VdPXy4xzhoY&list=PLC3F8BB776F3FE002&index=3

Flexibility and a person-centred approach are two vital approaches to ensure success.

a) What could public services employers learn from best practice elsewhere, including overseas, about recruiting and retaining young disabled people? What are the barriers to implementing such good practice?

See previous question.

Support for employers

7) How effective are government programmes which support or encourage employers to employ disabled people, particularly young disabled people? Does this differ by condition or disability? How could they be improved?

Success varies. At the DSA we work with employers who have a genuine appetite for a diverse and inclusive workforce, rather than those who wish to access a financial incentive.

a) What steps could be taken to improve awareness and uptake of relevant government support schemes?

Case studies to demonstrate success.

Exploding the myths and misconceptions around reasonable adjustments being costly and difficult to implement

Raise awareness of support available through Access to Work and other support mechanisms and programmes.

b) What actions could employers be taking without Government support? What barriers prevent them doing so?

They could review and update their equality and diversity policies and aim for a more comprehensive ethos to include cover Diversity, Equity, inclusion and Belonging.  They could engage with supported employment organisations to get advice and support with recruitment and retention of people who have disabilities. They could review all policies and procedures and remove unnecessary complexity and ambiguity which would help all employees, regardless of whether or not they had a disability. This is time consuming for HR departments and the roll out of new policies takes time to implement and become embedded but it can be achieved. Again all support provided by the DSA’s WorkFit programme to employers is free of charge in our efforts to raise awareness of the benefits of employing a person who has Down’s syndrome.

Enforcement of the rights of disabled people in the workplace

8) How effectively are the rights of disabled people upheld and enforced in the workplace? What barriers do young disabled people face in accessing the support (including legal support) that they need and are entitled to? How could enforcement mechanisms be improved?

This can vary dramatically. Often employees do not fully understand the rights of all of their employees in the workplace. This is an education piece that could be supported by the Disability Confident Scheme.

Providing copies of policies in Easy Read format and ensuring that people who have a disability have a named HR contact for advice and discussion would be beneficial to supplement a workplace buddy approach.  The model used by DSA WorkFit is to have at least two designated buddies to work with colleagues who have Down’s syndrome to be a support both for workplace tasks and also for the social/cultural elements to be navigated in the workplace.

When issues occur, it is often families who are left to support their loved one. The DSA WorkFit programme has been supporting individuals who have Down’s syndrome in a range of workplace scenarios including disciplinary procedures, being at risk of redundancy and other serious matters that the person and their family would not be able to navigate without significant support.

a) Is the present legal framework sufficient, in theory and in practice, in dealing with disability discrimination faced by young disabled people transitioning from education to work?

In practice, many young people would not know where to turn beyond their immediate family and would be reliant on work colleagues and line managers to support them.  This doesn’t always happen. The legal framework must provide a clear direction of best practice for employers to follow. As with all legislation, the correct application is vital.

Summary

The following actions by the government would support people with Down’s syndrome into employment:

• WorkFit to be recognised by the DWP as a specific and specialist provision for people who have Down’s syndrome.
• Further raising of awareness of WorkFit with Job Centre Plus branches in England and Wales.
• Extension to Access to Work: people with Down’s syndrome may not immediately be able to work for 16 hours or more per week, but this can be achieved for many with support over time. This extension would also be useful particularly in rural areas where transport is not easily accessible.
• Prompt processing of Access to Work claims to ensure that people have the support they need on the day they start their job rather than several weeks later
• Recognition of the long term benefits employment brings to both the mental and physical health and well-being of this group.
• A system that facilitates programmes like WorkFit to work with Disability Confident employers.
• Carrying forward the essential points of the EHCP during the transition to the workplace, for items such as travel training.

September 2023