Wanting to move away from home and live independently, either on your own or with friends, is something that all young people strive to achieve. Having arthritis will however, make this a bigger challenge than for those who don’t. But if you seek out the right advice and information, by contacting the appropriate organisations, you will begin to see how living independently can become a reality for you.
To help with the above it is also very important that you look at ways of becoming more assertive, developing the skills and techniques that will enable you to convince non- disabled people, in particular health and social service professionals, that you can actually manage for yourself – try an Arthritis Care, Positive Future Workshop (PFW), they have helped a large number of young people, just like yourself.
Your next step towards independent living is to contact your local authority housing department and ask for your name to be placed on the waiting list, this should include any local housing associations, but it is best to check this out as you may have to apply to a different organisation which deals separately with housing association waiting lists. It is important to do this first, even if you are not yet ready to actually move, as it could be a very long time before your name gets to the top. If you want to know more about how housing associations work write to: National Federation of Housing Associations and ask for their general leaflet. (See “Other Information” for address and telephone number.)
You should then spend this waiting time finding out what your rights are and what you are entitled to in terms of adaptations and equipment, plus how you will manage to pay all your housing costs.
There are numerous Acts of Parliament that give claim to enabling disabled people to have choices and rights about where they live, how they manage their personal care needs and to challenge discrimination. The more recent ones are:
Understanding Government legislation is no easy task, particularly when a number of sections relevant to you have yet to be fully implemented. However, there are numerous publications, written by disabled people them selves, who have direct experience of working through this maze and achieving their goal at the end of the day.
Your Rights to Housing and Support by Jenny Morris. A guide to what rights you may have to housing and support services. Information is given about where the rights come from so that you, or those helping you, will find it easier to challenge a situation where your rights are being denied. Published and distributed by The Spinal Injuries Association. Price: £6 including postage and packing.
Source Book Towards Independent Living by the Hampshire Centre for Independent Living. This book is designed to help disabled people to assess their needs for personal assistance (care support) and to approach agencies for the finance with which to pay for the amount of personal assistance (care) they need. Advice is given on how to find, employ and work with a personal assistant (care worker). Available from: Mark Walsh, 31 Churchfield, Henley, Bordon, Hampshire, GU35 8PF Price: £5 including postage and packing.
Independent Living – Personal Assistants – advertising and interviewing by the Spinal Injuries Association. Free fact- sheet in response to a large s.a.e. Provides basic information on how to obtain the services of a personal assistant.
Your local organisation of disabled people may be able to tell you about the availability of direct payments and Personal Assistant Support Schemes in your area, or you can write to The National Centre for Independent Living who may be able to advise you if a scheme is to be set up in your area.
If you want to read about how to control your own Personal Assistant Services contact the British Council of Disabled People (BCODP).
For the booklet Facilitating Personal Assistant Support Schemes by Fidelity Simpson and Jane Campbell write to: The Disablement Income Group. Price: £8 (See “Other Information” for the full addresses of the above.)