"This is mine to manage."
Independent Living is about having the help and support you need to live your life. This can include help to enable you to continue education after leaving school, help to get a job and to provide help for you at work and help for you at home or any other help you need to live the lifestyle of your choice.
Independent living
Many people will not need any changes to their physical environment to feel that they are in control. For other people, minor changes could make a difference - such as a handrail if you are experiencing balance problems. There are many adaptations you can make to your home or workplace to ensure that your ability to use these spaces is not compromised. The MS Society booklet on Adaptations and your home is a good place to start as it also contains tips on how to use your home environment so that it works for you.
Home Improvement Agencies (HIAs), sometimes called ‘Care & Repair’ agencies or ‘Staying Put’ schemes, are locally based organisations offering support for people to help them make adaptations, repairs and improvements to their home. They can provide guidance on getting financial support to undertake adaptation work (including applying for a Disabled Facilities Grant) and coordinating building works and payment. Some also provide gardening services and falls prevention services and may prevent the need for major or lengthy adaptations. The charity Foundations has details of local HIAs.
If you need financial help to live independently, or to ease exceptional pressure on you and your family, you may be able to get a Community Care Grant. Please refer to the MS Society publication Benefits and MS for advice on this and other grants and benefits.
Expert Patient Courses
Not surprisingly, living with a long term condition presents long-term challenges. The idea of going on a course to learn to deal with a condition may sound strange, but don't worry - this isn't anything like school.
The Expert Patient Programme (EPP) is an NHS-based training programme that allows people to develop new skills to manage their condition better on a day-to-day basis. Provided with the necessary 'self-management' skills they can make a tangible impact on their disease and quality of life more generally. If you feel that you are at a low point, the EPP course could be the thing for you. People report increased confidence, skills and knowledge after completing the course.
The courses run for two and a half hours over six weeks. They are delivered by lay people who themselves have a long-term health condition and have been specially trained to deliver the course. It can be tiring to have to constantly have to explain your condition to those around you, but at these courses you'll meet others in a similar position to you.
To find out more about courses in your area contact your local PCT or
visit the Expert Patients website.
Help at home
There are a range of services available from your local authority, the Independent Living Fund and other voluntary organisations that may be able to help.
Local authority services – social services:
Your local authority are responsible for providing a range of services mainly to enable you to live at home and to provide help for you at home such as getting up, going to bed, getting dressed etc. You will have to be ‘assessed’ which means that someone will come to visit you and discuss with you what your needs are. Not everyone is entitled to services but if you are eligible, they can be provided by the authority or you can organise your own services.
If you opt for organising your own services, you can recieve direct payments. This means that the local authority will provide you with a sum of money and you can choose to employ your own staff or to organise for a care agency to provide the service. There are local organisations that can help with paperwork and provide support for you on an ongoing basis. They can also put you in touch with other people locally who organise their own services so that you can chat about how they manage their staff.
Direct Payments and other finance
Having a direct payment gives you choice and control over who provides you with the assistance you want and when you want the service provided.
The Independent Living Fund can ‘top up’ the funding available from the local authority to provide you with help for personal support. In order to get money from the Independent Living Fund you must first have services from the local authority. If you are eligible to apply to the Independent Living Fund, your local authority will tell you when you speak to them. The Independent Living Fund (ILF) is a national resource dedicated to providing financial support for disabled people, enabling youto live independently
If you want the local authority to provide the services for you, this will usually be done through a local agency.
For more information on direct payments go to the Department of Health website
For information on your local direct payments support services either contact your local authority or go to The National Centre for Independent Living website and search their database for your local information.
Information on how to contact your local social services department will be available on your local authority’s website.
Other help that is available
Help from voluntary organisations:
There are many other organisations that can offer help and advice on sources of local support. Your local Centre for Independent Living or Organisation of Disabled People will know what organisations are available in your local area. You can search the database of the United Kingdom Disabled People's Council to find your local organisation.
Help with education:
If you need assistance with carrying on your education after leaving school or if you want to return to education there are organisations that can help. The National Council for Disabled Students (SKILL) provide a range of information including the contact details for the disability co-ordinator at further and higher education centres, see their website at www.skill.org.uk Skill also provide a range of factsheets including one on the financial help available for you whilst studying.
Help with employment:
Getting into work:
There is help available to enable you to get work and help to enable you to remain in employment. Job Centre Plus have a range of services to help you look for work. In each Job Centre is a disability employment advisor whose role is specifically to help people who need additional help to find work.
The job centre also have a number of programmes available to help you return to work if you have been unemployed for a while including a condition management programme, work trials and work step. Details of all of these programmes is available via the website above or at your local job centre.
Help when in work:
There is a scheme called Access to Work that will help provide equipment and support when you are in work. This scheme can help provide funding for specialist pieces of equipment i.e. something different to what would normally be provided to employees. This can include things like speech software if you have trouble using a keyboard for long periods of time or specialist keyboards. Access to Work can also assist you with the cost of taxi fares to get to and from work or help with having assistance at work. Details of the Access to Work scheme can be found at your local Job centre plus
The Multiple Sclerosis Society of Great Britain and Northern Ireland is a charity registered in England and Wales (207495) and Scotland (SCO16433)
