Written evidence from Spinal Muscular Atrophy UK (DEG0155)

Spinal Muscular Atrophy UK provide accurate information and a wide range of support services to those impacted by this rare and complex genetic condition. Established for 35 years, we work to improve access to the best care, services and drug treatments today and fund research projects that can change tomorrow.

The information in this submission is particularly related to adults who have the rare neuromuscular condition, Spinal Muscular Atrophy (SMA). SMA results in progressive muscle weakness with resulting physical symptoms ranging from mild walking difficulties to severe physical disability requiring 24 /7 support with daily living tasks.  Many people who have SMA are full-time Powerchair users who, with appropriate support and opportunities, are able to live and work independently.  The content of this submission is collated from the questions our support team are asked and the experiences that members of the SMA community share with us

Progress so far and impact

What progress has been made, especially since 2015, on closing the disability employment gap? How has this progress been made?

• We hear from people in the SMA community who are employed in a range of sectors and in a range of roles:
• more of those we hear from are employed within larger (rather than smaller) organisations (private and public sector); obtaining these posts was not always easy and for many took great persistence
• many feel that with appropriate adaptation of the physical environment, technology and equipment, Personal Assistant and attitudinal support, experiences and outcomes are positive for both them and their employers – but that there is still room for improvement
• Some people we hear from are self-employed. For some this was a deliberate and positive choice; for others it was seen as the only accessible option.  Incomes are not always secure.

What issues are there around work and access to employment for people who have SMA?

When seeking employment:

• Many feel their options are limited by the number of jobs where major physical barriers are an issue - barriers which would take a lot more than ‘reasonable adjustments’ to overcome

• Possibilities are limited by the number of accessible opportunities in a geographical area where accessible housing is also extremely limited; one graduate described the ‘chicken and egg’ situation of finding accessible work and accommodation – he had to turn down 2 job offers because he could not find accessible accommodation in the vicinity. He returned to live at home, which had the housing adaptations he needed, but no accessible job opportunities
• Even within a local area, travel options may be limited for a powered wheelchair user who may also have respiratory issues (limiting safe use of public transport, especially in the winter) and who needs a Personal Assistant to accompany them. 
• Feeling uncertain about being given equal consideration in the selection and interview process isn’t uncommon
• Many feel unsure about when and how to disclose their disability in a way that will not disadvantage their application
• Experiences of being labelled by their condition instead of their skills and knowledge is again not uncommon
• First time job seekers feel they often lack relevant employment experience compared with their peers – work experience, ‘Saturday’ jobs and vacation jobs having all been similarly difficult to secure

When in employment - and particularly if their progressive condition deteriorates

• We hear of experiences of non-inclusive work cultures and environments – attitudinal and  institutional barriers, lack of knowledge, understanding and training
• Some have found their employers supportive and flexible
• Others’ experiences include feeling unsupported, unwanted, unvalued or even forced to move on
• Access to work support is sometimes inadequate if needs change significantly – for example if someone becomes a full-time wheelchair user and  ‘reasonable adjustments’ for example include a lift, this is a huge expense unlikely to be granted, even if it’s physically possible

• Practical difficulties are often intensified by emotional challenges of coming to terms with the change.

What is the economic impact of low employment and high economic inactivity rates for disabled people? Are some disabled people (for example, young disabled people or people with different health conditions) more at risk of unemployment or economic activity than others?

• Disillusionment for many, including for highly achieving graduates who, having previously felt included and valued participants in society, suddenly feel rejected and unvalued
• Potential mental health challenges for many who want to participate fully in society but who experience unsurmountable barriers in accessing work and feel undervalued, stigmatised and unsupported
• One older adult shared that she would like to work, but that she experiences fatigue and already finds employing a team of PAs almost a full-time job – and she’s unsure of how she could find and manage regular meaningful work on top of this

What has been the impact of the coronavirus pandemic on disabled peoples’ employment rates?

• Some who were employed have lost that employment, due to financial difficulties of employer
• For some, the need to shield has not been fully supported by the employer. For example, some people who felt uncomfortable returning to work environment – and who were not able to work from home – have found themselves having to leave their employment in order to stay safe

Providing support

Where should lead responsibility for improving disabled peoples’ employment rates sit (for example, DWP; Business, Energy and Industrial Strategy; Health and Social Care)?

• We suggest that for inclusion to have real meaning, the employment of disabled people should be a central plank of the Business, Energy and Industrial Strategy with the DWP and H and SC working closely to ensure the support needed to achieve the goals set out in the strategy is provided.
• We note that despite directives to reduce employment gap across all sectors – not just for disabled workers – the report of Work and Health Programme statistics to August 2020 - GOV.UK (www.gov.uk) indicates that despite many disabled people signing up to the scheme, less than 2 in 10 disabled people have achieved the defined job outcome – that’s 8 in 10 disabled people who have not. It may be easier to close gap for other groups, leaving disabled people further behind – they need therefore to be a high priority group within the Business, Energy and Industrial Strategy.

What is the right balance between in and out of work support, and is DWP getting the balance right? What more should the Department look to provide?

• Experiences suggest that lack of funding puts pressure on the system and on DWP’s ability to respond quickly and supportively
• Experiences of Health and Social care are also of a system already underfunded and overburdened
• If someone wants to work part time, they are often penalised by the benefits system financially.
• If you are someone who has support from a family network and has not employed PAs, there will be considerable adjustments to make around how days are organised, with associated costs and benefits. It’s important that the system supports this transition.
• There isn’t sufficient flexible support in the benefits system to transition from non-work to work and enable people to access work and evaluate whether it works for them, without losing their financial stability.  
• Travel costs – which can also restrict someone from taking an opportunity – are often higher due to the need for wheelchair accessible vehicles or an accompanying PA on public transport, if that mode of travel is possible.
• The system isn’t flexible enough to respond rapidly and appropriately to changes in work circumstances. We hear from people who cannot afford to be left waiting for the system to catch up with frequent changes in their hours or work circumstances
• Access to work – experiences vary widely. Some have had excellent support from access to work in terms of equipment and / or travel support. Others have found the process long and involved and difficult to access.  Clearer support and information and simpler access to support needs to be made available to both employers and employees.
• Access to work support is sometimes inadequate if needs change significantly – for example if someone becomes a full-time wheelchair user and needs ‘reasonable adjustments’ e.g., a lift, this is a huge expense, unlikely to be granted
• Increase support to employers and employees through improved Access to work, which is currently only available to paid employees and does not cover work experience or volunteering, a crucial part of finding a way into work, e.g., graduate schemes / internships.
• More funding needs to be made available for Personal Assistants at work, current packages from Health and Social Care would often not include enough to cover for a working day. 
• We are not aware of anyone who has used Fit for Work advice or helpline.  This indicates it’s either not working / not relevant for SMA / or just not known about. 
• Increase support through wider Access to work provision, to cover work experience or volunteering, a crucial part of finding a way into work, e.g., graduate schemes / internships. 
• Evidence of the impact of support schemes /resources should be better collected and used to effect improvements
• We suggest the DWP operates with conflicting goals: on the one hand of getting people into work and imposing sanctions around this and on the other hand making sure people receive all the benefits and support they are entitled. We suggest there is a bigger role for an independent advisory organisation such as the CAB to ensure people are fully and appropriately supported.

How can DWP better support employers to take on and retain disabled employees, and to help them Disability Awareness raising

• We would like to see further options explored so that business/employers have adequate opportunity to get involved with the DWP and develop schemes

• Review the Disability Confident scheme with input from employers and employees to make sure it is effective and not just a tick box exercise. Then promote and make the revamped Disability Confident Scheme a must for all businesses / employers

• Make comprehensive disability training available and compulsory for all. This needs to be disability organisation and government led – and UK wide.

• Promote and make inclusive recruitment practice a must for all business / employers
• Increase support to employers through widening Access to work, to cover work experience or volunteering, a crucial part of finding a way into work, e.g., graduate schemes / internships. 
• Share good practice and promote how the employer gains by supporting the needs of an employee, including:

• more engaged workforce
• retaining high quality staff – skilled, loyal, and hardworking
• diverse workforce – reflecting range of customers/community the employer operates in
• inclusive workforce - reflecting disabled community
• breaks down barriers – discrimination / inequality

Are “reasonable adjustments” for disabled people consistently applied? How might enforcement be improved?

• A positive change in culture and standard practice is needed, with greater clarification about what is reasonable and more flexible financial support to enable adjustments.  We need to support and encourage employers to employ disabled people.
• Covid-19 has shown that businesses and workplaces can adapt and be more flexible.  Use the good outcomes from this – the technology / flexibility with home working / hours

Enforcement and next steps

There needs to be a cultural change – the cultural environment impacts on ability.

• There needs to be a narrowing of the employment gap with strengthened links between employers and the disabled community. 
• There needs to be financial backing from government and organisations tackling the issue.
• There needs to be wider consultation with all disabled people, and especially young adults seeking employment for the first time.
• Consider involving exemplary business / commercial companies as a lead / driver of better practice  

How should DWP look to engage disabled people and the organisations that represent them in formulating the Strategy?

• Listen to disabled people – their lived experience is needed to affect change.
• Invite disabled people to join the decision-making committees
• Contact organisations that support disabled people – they can offer contact with the community and lived experience, as well as through surveys / polls share information.  

As an example, we are part of a consortium who were asked to support the DWP with lived experience of work – we asked the young people in our community if they would get involved, they agreed. That was over a month ago – still waiting to hear from the team at DWP about the next steps. Meanwhile the young people are left waiting – will they agree to take part again? Do we look incompetent? Do DWP look incompetent? Will it happen?

We understand consultation is more challenging due to the pandemic, but it has offered the SMA community great opportunities to interact through on-line platforms; home -based interaction with their peers and support organisation.

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Personal Experience submitted by a Young Adult, aged 27 years, who has SMA and is a full time powerchair

I graduated from university in Summer 2016 and started working for one of the UK’s high-street banks on their graduate scheme from September 2016. I spent 2 years on their graduate scheme, before finding a permanent position in the same organisation, which I am still in today. There are certainly benefits for working for a large organisation, particularly for the adjustments that are deemed reasonable to be put in place. There was an established team in HR for Health, Safety and Wellbeing and they supported to ensure I had suitable equipment e.g., a height adjustable desk and work was carried out in the office to make it more accessible e.g., automatic doors. Other aspects of accessibility were not so efficient, such as the time taken to get a suitable fire evacuation plan in place with means of leaving the building from the 3rd floor. I also heard from other colleagues who needed specialist software e.g., for people who are partially sighted, that it could take months for software to be provided and colleagues had to be put on gardening leave for this time because they were reliant on the software to perform their role. My experiences were much more positive however generally.

In terms of representation of people with disabilities in the workplace, I think there is still some way to go. In my organisation, there is a disability network which would meet quarterly (pre-covid) but it is certainly not as well established as other inclusion networks e.g., LGBTQ or BAME. A reason for this is because the disability network struggled to get sponsorship from Senior Management to raise the profile of the network. Additionally, there seems to be a lack of representation of disabled people in senior positions in the organisation. In the corporate world, there still does seem to be a challenge in supporting colleagues with disabilities to reach senior positions, yet I do not hear about many initiatives under way to address this.

A real struggle I had was finding a place to live for my job. I had to relocate from Manchester to Milton Keynes, and finding accessible property was a real challenge. I went to the local council in MK to see if they could offer any support, but they said they could not as I was in theory making myself homeless by choosing to move for this role. I found this very disheartening and felt a lack of support for wanting to get into the workforce and build my career. Whether this is from DWP/local councils/other agencies, I would like to see support for people with disabilities wanting to relocate for career opportunities. I fear that a lot of people don’t take on opportunities because of the challenges involved in relocating.

December 2020