Respite for parents of a disabled adult: a break after years of caring

1. 1

   Ask adult social care for a carer's assessment for each of you

   Care Act 2014, section 10

   Say that you are the parents and unpaid carers of a disabled adult who lives with you, and that you would each like a carer's assessment. The council must carry one out where it appears a carer may have any level of need for support, whatever your income or savings.
2. 2

   Ask for part of it to be a conversation without your son or daughter

   Statutory guidance, paragraph 6.18

   The guidance says your views on how long you can keep caring should, where appropriate, be sought in a separate conversation from their assessment. That gives you room to speak plainly about tiredness or your own health without saying it in front of them.
3. 3

   Describe the next few years as well as this week

   Future needs

   The assessment has to consider whether you are able and willing to carry on caring, and your likely future needs. Mention your age, your own health, and anything that is getting harder, such as lifting or broken nights.
4. 4

   Make sure your son or daughter's needs are written down in full

   Statutory guidance, paragraph 6.115

   Needs you meet as parents should still be recorded as eligible in their own assessment, even where the council is not paying to meet them. If you later need to step back, the council already has them on file.
5. 5

   Ask for a review every year, and tell your GP you are a carer

   NICE guideline NG96

   NICE recommends that carers of people with a learning disability have their needs reviewed at least once a year, and whenever something significant changes, and that carers register themselves as carers with their GP.

Section 10 of the Care Act says a carer's assessment must look at whether you are able and willing to carry on, what you want from your own life, and whether you work or would like to, or want time for learning or leisure. That last part matters to a parent who gave up a job years ago, or who has not had a holiday in a long time. If the thought of taking one brings guilt with it, feeling guilty about taking a break goes through where that comes from. The council can combine your assessment with your son or daughter's if everyone agrees, but you are still entitled to have your own needs looked at in their own right.

If your son or daughter helps you as well, say so. NICE asks assessors to take into account that caring can go both ways in a family like yours, with parents who are older and have support needs of their own. The Care Act, section 10 and the Care and Support statutory guidance are worth having to hand when you ring. What is a carer's assessment? walks through the day itself, and Carers UK's guide to the carer's assessment covers how to prepare.

Start with your son or daughter's view. Some people are at their most settled in their own room, with their own things, and a carer coming in keeps everything the same except who is there. Others enjoy company and would look forward to a club night or a weekend at a short break service more than they would to an afternoon at home. Ask them, in whatever way they communicate best, and watch what they choose when they are offered a choice.

If your son or daughter has a learning disability, care at home for an adult with a learning disability explains why one or two regular people tend to work better than a rota. For an autistic adult, autism support at home covers the sensory side of the house and how to prepare somebody for a new person. Where the needs are mainly physical, transfers, hoists and two carers sets out what to check before anybody covers moving and handling. The NHS guide to Shared Lives schemes links to a search for schemes near you, and Mencap's page on short breaks and respite describes the short break services a learning disability charity can offer.

There is no fixed timetable for this. People differ a great deal in how long it takes, and your son or daughter sets the pace. It helps to write a short "about me" document with them, in their own words where possible: what they like, what upsets them, how they say no, and what helps when they are anxious. The carer reads it before the first visit, and it goes with them to any other form of break later on.

The same person matters most. A different face each week means your son or daughter starts again every time. When you talk to carers, ask about regular availability over months, not only the dates you have in mind now, and ask what they would do if they were ill on a day they were due. When your carer is ill or on holiday covers planning for that, and questions to ask at interview has others worth asking, including about the carer's own training and experience, which you check with them directly.

The money attached to your son or daughter's care plan is their personal budget. A direct payment is that budget paid as money rather than as a service. If your son or daughter can decide to have one, it is their decision. If they lack the capacity to ask for it, section 32 of the Care Act allows the council to pay it to somebody authorised to manage it in their best interests, which is often a parent. Direct payments can also be made to carers for support that meets their own needs as carers, so ask about both.

One rule is worth knowing before you choose anybody. A direct payment cannot normally be used to pay a close relative who lives in the same household, which includes a brother or sister living at home, unless the council agrees it is necessary. Personal assistants and direct payments explains the difference between employing a personal assistant and paying a self-employed carer, and direct payments covers asking for one, what records the council wants and what to do if it says no.

None of this has to be framed as preparing for the worst. For your son or daughter it can simply be part of growing into adult life with more people in it, which is a reasonable thing for any adult to want. When the parents can no longer cope takes the longer planning further, including where your son or daughter might live, the legal side, wills and brothers and sisters. Live-in care for a younger adult with a disability covers one of the options for staying at home.

If something happens before a break is in place, such as a parent going into hospital, the council can meet urgent needs before it has finished any assessment. Emergency respite sets out who to ring and what to say.