When someone with Multiple Sclerosis is significantly disabled in terms of the everyday tasks that they can perform, it is not always possible for them to remain in a home setting continuously – even with help from family, friends and the health and social services. Other options may have to be considered; these might include a temporary and occasional break through being cared for elsewhere, to longer term and more permanent care outside the home. People have very dif ferent views about these situations, and how to manage them. They are not often easy to discuss, let alone act upon. This is not least because such options almost always involve the separation of the person with MS, from their partner or other family members, and this adds to the anxieties and concerns of all parties to the discussions.

Respite care

Respite care is often thought of as a need for a break from partners, not just from their care. This need not be the case at all, and a break is needed purely from the tasks of actual caring. However, it is expensive, and practically more complicated to provide respite care for two people rather than one. There are therefore currently very few places for couples in respite or short-term residential care when one partner has MS, and you will be fortunate if you find such a facility. Given the importance of maintaining a good relationship with your partner, you could lobby your local authority about this problem and/or discuss it with the welfare officer of the local branch of the MS Society.

Residential care

There are several benefits that may well be affected if you go into permanent residential care outside your home. These are Disability Living Allowance, Attendance Allowance, Income Support and Income Job-Seekers Allowance, Housing Benefit, Council Tax Benefit, together with one or two benefits targeted on special groups of people. The rules governing exactly how these benefits are affected are different in each case, so you should seek advice, initially from Citizens Advice, before you make any decision about going into residential care.

Costs
Unless you negotiate independently for residential care, and then pay yourself, under the NHS and Community Care Act 1990 local authorities are empowered to charge you for the cost of providing such care, whether they provide it themselves or use an independent home. The local authority fixes a standard rate for the cost of its own accommodation, or bases it on what it is charged in providing a place in an independent home. If you cannot pay the appropriate rate then the local authority will assess your ability to pay and, on the basis of the criteria, decide what to charge. It is important to note that the assessment would be of your partner’s financial status alone, not of your joint status, if you have a partner. Although a local authority can approach a spouse and ask for a
‘reasonable’ contribution to the support of the resident, there is no formal definition as to what is reasonable – and an unmarried partner has no obligation in this respect.
The criteria by which liability to pay some or all of the costs of residential care are assessed are rather complex. They will consist of investigating your financial status, in terms of both capital and income, and then making certain kinds of allowances for personal expenses. It is very important that, if you are considering residential care, you should seek advice about the costs for which you would be liable well before you enter into any agreement. Citizens Advice should be able to help you in this respect, and you may well have a local disability information service which can also assist you.