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 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. If the thought of a break brings guilt with it, feeling guilty about taking a break may help. The council can combine your assessment with your son or daughter's if everyone agrees.

If your son or daughter helps you as well, say so: NICE asks assessors to take into account that caring can go both ways. 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 most settled in their own room, and a carer coming in keeps everything the same except who is there. Others would look forward to a weekend away with company. Ask them, in whatever way they communicate best, and watch what they choose when they are offered a choice.

A Shared Lives scheme matches your son or daughter with an approved carer, and they have the chance to get to know each other before any stay is agreed. Shared Lives explains how a placement starts and what it costs. For a trip away, holidays with support and holidays as a disabled person in the UK cover where to go and taking a carer with you. Clubs and day services give you regular hours to yourselves too: see day services and days out. Overnight care so the family carer can sleep covers the difference between a sleeping and a waking night.

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, see autism support at home. Where the needs are mainly physical, read transfers, hoists and two carers and, for cerebral palsy, what can change with age. 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 services a learning disability charity can offer.

There is no fixed timetable, 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 kind of break later on.

For a break away from home, visit the unit or the Shared Lives home together first, and take photographs of the room and the people to look at in the days before. Mark the dates on the calendar they use. Pack familiar things, such as their own pillow and the music they fall asleep to, and send a list of their medicines with the times they take them. If they have a hospital passport or a positive behaviour support plan, a copy goes too, so everybody responds to them in the way that already works.

The same person matters most, because a different face each week means starting again every time. When you talk to carers, ask about regular availability over months, and 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. There is no way to search PrimeCarers for carers by learning disability or autism experience: what a carer says on their profile is their own account, and you check it with them at interview.

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. Making decisions for a grown-up son or daughter covers capacity and best interests.

Your own carer's assessment can lead to a personal budget of your own, separate from theirs. The statutory guidance (paragraphs 11.40 and 11.41) says it should help you look after your own wellbeing whether or not replacement care is needed, and gives examples such as a gym or leisure centre membership, a course, or help to stay in paid work. It can be paid to you as a direct payment. Personal budgets and personal health budgets explains how the amount is worked out.

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 employing a personal assistant or paying a self-employed carer, and direct payments covers asking for one and what to do if the council says no.

For your son or daughter, none of this has to be about preparing for the worst. It can be part of an adult life with more people in it. 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. Supported living versus care at home compares two ways of living as an adult, and live-in care for a younger adult with a disability covers one of the options for staying at home.

If a brother or sister helps from further away, they can join your PrimeCarers account with their own login, at a level of access you choose, and be part of the conversation with the carer. The carer's visit reports go by email to everyone on the account who needs them, so the whole family reads the same account of how the week went. Sharing care with family on PrimeCarers explains the access levels.

If a parent goes into hospital before a break is in place, the council can meet urgent needs before it has finished any assessment. Emergency respite sets out who to ring.