FOP and a Career

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There are many career options for people with FOP, from developers and teachers, to influencers and administrators.

The Equality Act (2010) means that employers have a legal duty to accommodate any needs that a disabled employee may have.  They must also make ‘reasonable adjustments’ within the workplace to support the person with a disability.

A ‘reasonable adjustment’ will vary depending on the role, but may include (but are not limited to):

*Removing physical barriers

* Providing extra support

* Providing an accessible carparking space

* Changing the layout of a work area

* Being flexible about the working hours

* Providing assistive technology

Further guidance can be found here on the website.

The variable and progressive nature of FOP may mean that adjustments need to be reviewed regularly to ensure they continue to meet your needs.

If you disclose the details of your disability, your employer has a legal duty to ensure that information remains confidential unless there is a risk to health and safety.

As with everything, the key to a successful partnership is communication. You may find it useful to share information about FOP with your employer to help them to understand how FOP may affect your day to day life.

For further information and detail, the following charities and organisations have provided excellent and in-depth guidance to support you in the workplace.

Access to Work is a government programme aimed at supporting disabled people to take up or remain in work.

Disability Rights UK is an organisation which offers a range of advice and guidance for those living with a disability.

They have a wide range of factsheets on a range of topics, including work and careers.

Doing Careers Differently is a fantastic guide from the Disability Rights People.

It combines practical advice and guidance with stories from real people as well as celebrities.

Click here to download.

Navigating Adulthood‘ is a video presentation from FOP community member Laura Rossano.  As part of the IFOPA’s 2022 Virtual Family Gathering, she shared her experiences of navigating college and her career path whilst living with FOP.

Laura lives in Long Island, NY with her husband.  She holds a Master’s degree and is a vocational evaluator and self-confessed shopaholic!  Thank you for sharing your story.

The excellent team at Rare Revolution have created Top Ten Tips for Employees and Top Ten Tips for Employers.

They have taken advice from the rare community to put together some ways to allow employees to thrive and tips to support employers to make their working environment inclusive.

You can download the resources for free:  Resources – Rare Revolution

The National Development Team for Inclusion NDTi are a social change organisation that has been working for over 25 years with communities, governments and public services to enable people at risk of exclusion, due to age or disability, to live the life they choose.

They provide a range of comprehensive resources to support people and create change which leads to better lives.

Visit their Employment Resources page for easy-to-read practical and useful advice, sharing clear information about what has already worked for others.

The charity Scope offers online and offline employment support.

Their employment support services are designed for working-age disabled people.

The charity Shine exists to support those living with spina bifida and hydrocephalus.  However, there is excellent advice on their Employment page which can be useful for those living with FOP.

Click here to download their leaflet: Information for Employers. This is written for an audience of those living with spina bifida and hydrocephalus but most of the advice can be applied or adapted for those living with FOP.

Shine have also produced a useful Workplace Passport, again for those with spina bifida and hydrocephalus. However, it could easily be adapted for FOP and would provide a useful starting point for conversations between the person and employer.