There is a range of approaches when considering how someone with ataxia will live in adult life. Some parents redesign the family home to enable an element of independence, other young people with ataxia prefer to live completely independently (ie: separately from their families) and employ personal assistants to enable them to do so.

If you or someone you care for gets help from social services, you can apply for direct payments. These let you choose what services to buy and engage people to supply them, either yourself or through an agency, instead of getting them from your council.

Contact a Family (www.cafamily.org.uk) has produced a detailed guide on ‘Preparing for adult life and transition’ that discusses formulating a transition plan, which ideally should start around a child’s 14th birthday (Year 9). It is an inclusive process and can cover issues such as:

  • Making friends and having a social life
  • Sexual relationships
  • Financial implications of leaving home
  • Getting enough help at college or university
  • Ageing parents
  • Personal care

The Transition Information Network (www.transitioninfonetwork.org.uk) is an alliance of organisations and individuals who come together to improve the experience of disabled young people’s transition to adulthood. 

Work

Many people with ataxia have successful careers and offer excellent role models to younger people. They can be encountered at our conferences and events or through our social media (see below)

A Disability Employment Adviser (DEA) at the local Jobcentre can help find a job or gain new skills and tell you about disability friendly employers in your area. They can also refer people to a specialist work psychologist, if appropriate, or carry out an ‘employment assessment’.

Careers Information and Advice for Young People (www2.cxdirect.com/home.htm or 0800 100 900) is aimed specifically at young people aged 13-19.