10 Things you should know about helping people with Muscular Dystrophy into employment
Muscular dystrophy is the term used to denote a group of rare inherited genetic conditions that gradually cause the muscles to weaken and waste, leading to an increasing level of disability.
Different types of muscular dystrophy affect specific groups of muscles, have a specific age when signs and symptoms are first seen, vary in severity and progression, and are caused by mutations in different genes. Muscular dystrophy can run in the family, or a person might be the first one in their family to have the condition.
Not all types of muscular dystrophy cause severe disability and many do not affect life expectancy. Muscular dystrophy is a progressive condition, which means it gets worse over time. There is currently no cure for muscular dystrophy, but treatment can help to manage many of the symptoms.
- In the UK, more than 70,000 people have muscle-wasting conditions.
- There are 60 different types of muscle-wasting condition.
- Muscle-wasting conditions are rare or ultra-rare genetic conditions, some of which are inherited and others of which may appear out of the blue with no family history.
10 Things that Employability Professionals need to be aware of:
- There are many types of muscular dystrophy and the way these affect people types can differ from person to person. Not all people with muscular dystrophy will need accommodations to perform their jobs and many others may only need a few. Assessing reasonable adjustments should therefore be tailored to each individual.
- Muscular dystrophy is a condition that varies over time, this means that some needs might change over the course of an individual’s employment. The employer should treat reasonable adjustments as a continuous process.
- The Department for Work and Pensions runs a scheme called ‘Access to Work’ to enable disabled people to start or stay in work. The Government may fund equipment, transport and support work. The application for Access to Work should be completed by the employee but employers should be aware that some reasonable adjustments can be publicly funded.
- Many, but not all, individuals with muscular dystrophy are wheelchair users. Companies should ensure that if their employee is a wheelchair user then premises and equipment are wheelchair accessible. Depending on the quality of public transport in the area and whether the employee drives, wheelchair users may have problems with transportation to the office. Companies could consider flexible working and private transportation such as taxis, for which Access to Work may be able to assess and approve funding.
- As well as support workers, there is technology or ‘assistive tech’ that enables people with muscular dystrophy to perform tasks that their conditions would otherwise prevent them from doing. For example, those who have motor impairment in the upper limbs can use ‘eye gaze’ technology to type. Companies should be open to engaging with new technology and software, which can be discovered by consulting the employee, using government advice, internet research or disability rights organisations, to enable the employee to perform to the best of their ability.
- Some individuals will have support workers to help them with certain tasks for all or part of the day. The support worker may be able to help with physical tasks the employee would be unable to do without assistance, depending on the amount and type of care the individual receives.
- If the type of muscular dystrophy affects the energy levels of the employee, companies could consider part-time working, flexible working or home-working.
- The severity of some conditions may vary during times of the year. Individuals may feel particularly affected by their condition in cold weather. Seasonal adjustments to timetables may be appropriate.
- Some individuals with muscular dystrophy may be open about having a condition to other members of staff and/or the adjustments they need for it, others may be more private. If employers feel it necessary to staff know, they should check with the individual about the way in which they would like the information delivered
- It is important that individuals with muscular dystrophy are included in all areas of staff culture, such as socials and away days. For example, if the employee is a wheelchair user the organising committee should double check a restaurant or bar is wheelchair accessible before booking.