When you can no longer be your son or daughter's carer: planning ahead

The Mental Capacity Act starts from the assumption that a person can make their own decisions, and it expects everyone to help them do so before anybody decides for them. Capacity is judged one decision at a time, so somebody who cannot manage a tenancy agreement may be perfectly able to say which town they want to live in. Mental capacity and how it is assessed explains how that works, and the move to adult services at 18 covers how the same Act applies from the age of 16.

Take the conversation slowly and more than once. Use the way your son or daughter communicates best, whether that is pictures, visits to places, or someone outside the family they trust. If they find it hard to say what they want, notice what they choose when they are given a choice, and write that down too. Where somebody would have substantial difficulty taking part in a council assessment and has nobody appropriate to support them, the council must arrange an independent advocate under the Care Act. You may be that appropriate person now, and it is worth knowing an advocate exists for later.

Some parents put this conversation off because they do not want to frighten their son or daughter. You do not need to frame it around you getting older. It can be about what they would like their life to look like in a few years, which is a reasonable thing for any adult to think about.

1. 1

   Ask for a needs assessment for your son or daughter

   Care Act, section 9

   Ring adult social care at your council and ask for a needs assessment. The council must assess any adult who appears to need care and support, whatever their savings, and it must consider all of their needs regardless of the support you give.
2. 2

   Ask for a carer's assessment for each of you

   Care Act, section 10

   A carer's assessment has to look at whether you are able and willing to carry on caring, and whether you are likely to be in future. Say plainly what you can manage now and what you are worried about in the next few years.
3. 3

   Ask for a contingency plan to be written in

   In the care and support plan

   The statutory guidance says plans should set out what happens in a sudden change or emergency, and that this should not be left until a crisis. Ask whose number is on it and what would happen on the first night.
4. 4

   Ask for a review when anything changes

   Your health, or theirs

   An operation, a fall, a diagnosis or a bereavement in the family are all good reasons to ask for the plan to be looked at again, before the change becomes an emergency.

The reason to do this now is written into the statutory guidance. Needs that you are meeting as parents should still be recorded as eligible, so that if the caring arrangement breaks down, the council already knows they are eligible and can act on them (paragraph 6.115). It helps to know the rest of what the law says, because you may need to say it on the phone. Under section 10 of the Care Act 2014, the duty to assess a carer applies "whether currently or in the future", and regardless of how much support the council thinks you need or how much money you have. The Care and Support statutory guidance tells councils that an assessment should not assume others are willing or able to take up caring roles. That matters twice in this situation: for you as you get older, and for brothers and sisters who may be assumed to be next in line.

A carer's assessment can also lead to support for you now, such as breaks. What a carer's assessment is explains what happens on the day, and local authority funding covers how the council decides what it pays for. If you have not had a proper break in years, respite care is worth reading as well, and respite for parents of a disabled adult covers building a break slowly with the same person, because time apart that is planned also shows your son or daughter that other people can help.

We have set the first two side by side in more detail in supported living versus care at home, including how the money works for each, so it is not repeated here. The Shared Lives description comes from the NHS guide to Shared Lives schemes.

Whatever the option, a gradual move tends to go better than a sudden one. Somebody who has already spent weekends in a supported living house, or who already has a support worker they like coming in twice a week, has people and places they know when the bigger change comes. That is one reason to bring other people in while you are still there. If staying at home with support is the likely answer, you can search for carers near you and compare their rates, and read the profiles together with your son or daughter so they have a say in who comes. Carers on PrimeCarers charge £18 to £25 an hour with our fee included, against £28 to £35 at an agency, and live-in care starts at £1,050 a week.

PrimeCarers is an introductory service. We introduce self-employed carers and do not provide care ourselves. Before a carer's profile appears we check their identity and right to work, run an enhanced DBS check on the Update Service, and interview them online, and carers are insured while they work. We do not check qualifications, training or references, so ask each carer about their experience of supporting somebody like your son or daughter. Care at home for adults with a learning disability covers what that support looks like week to week, and live-in care for a younger adult with a disability covers the live-in route.

If your son or daughter can make the decisionSection titled If%20your%20son%20or%20daughter%20can%20make%20the%20decision

A lasting power of attorney is a legal document in which a person chooses who can make decisions for them. There are two kinds, one for health and welfare and one for property and financial affairs. The person must be 18 or over and must have the mental capacity to make the LPA at the time they make it, according to gov.uk's guide to lasting power of attorney. A learning disability does not by itself mean somebody cannot make one. If your son or daughter can understand what an LPA is and whom they are choosing, it lets them pick their own attorneys, which may be simpler for everyone than a court order. An LPA can name more than one attorney, which helps with the question of what happens later.

If they cannot, a deputy may be neededSection titled If%20they%20cannot%2C%20a%20deputy%20may%20be%20needed

A deputy is appointed by the Court of Protection to make decisions for somebody who lacks the capacity to make them. There are two kinds: a property and financial affairs deputy, who deals with things like bills and bank accounts, and a personal welfare deputy, who makes decisions about medical treatment and how somebody is looked after. Gov.uk's guide to becoming a deputy explains who can apply and how. The court is required by section 16 of the Mental Capacity Act to prefer making a single decision itself over appointing a deputy, and to keep a deputy's powers as limited as it reasonably can. A deputy reports to the Office of the Public Guardian each year.

Day-to-day care does not need a deputy. The Mental Capacity Act protects somebody who gives care in a person's best interests after taking reasonable steps to check whether the person could decide for themselves. A deputyship is more likely to be needed for money held in their own name, such as savings, an inheritance or a bank account, beyond what an appointee can manage for benefits.

A deputyship does not pass to anybody when you dieSection titled A%20deputyship%20does%20not%20pass%20to%20anybody%20when%20you%20die

This is the point to plan around. The Office of the Public Guardian's practice note says that where deputies were appointed solely or jointly, the deputyship ends when a deputy dies. If deputies were appointed jointly and severally, the surviving deputy can carry on. Where the person is left without a deputy, the Office of the Public Guardian refers them to the council.

There are two ways to plan for this. You can apply with a son, daughter, relative or friend as a second deputy, appointed jointly and severally, so either of you can act alone. You can also ask the court to name somebody to succeed you: section 19(5) of the Mental Capacity Act lets it appoint a successor at the same time as the deputy, to take over on events the court specifies. Somebody who agrees to be named should understand what the role involves before they say yes. Solicitors' fees for a deputyship application covers what a solicitor charges, and deputyship fees: advice and guidance covers the court's own fees.

Trusts are a specialist area, and small mistakes in how one is drafted can cost your son or daughter their benefits. Take advice from a solicitor who writes wills and trusts for families of disabled people, and ask them directly whether they do this work often before you instruct them. Gov.uk explains what a discretionary trust is and how trusts are taxed. Mencap, the learning disability charity, publishes information on wills and trusts for parents and carers.

In England, a council's financial assessment for care counts capital, and above £23,250 a person pays for their own care in full. An inheritance of any size can therefore change what your son or daughter pays, and possibly whether they keep benefits that are means-tested. Will writing and protecting assets covers wills more generally, and direct payments explains how council money can be paid so that your son or daughter, or someone for them, arranges their own support.

There is a wide range of roles between doing nothing and doing everything. A sister who lives far away might be a trustee, an attorney or a joint deputy, and a regular visitor. A brother nearby might be the person the council rings first in an emergency, without being the person who gives care. A sibling who can do none of these can still be a brother or sister, which may be what your son or daughter wants most.

Some brothers and sisters have spent their own childhoods alongside caring, and they may carry feelings about it that are not easy to talk about. A plan that gives them a clear, limited role they have agreed to can be easier to say yes to than an open expectation. Discussing carers with your family has more on those conversations. Carers UK, the national charity for carers, has advice for anyone caring now or expecting to, including siblings.

Keep a copy at home, give one to whoever would be called first, and ask the council to add it to their record. Update it each year, perhaps at the same time as their annual health check if they have one, and whenever something significant changes. If your son or daughter has a learning disability, a hospital passport covers the health part for hospital stays, and care at home for adults with a learning disability explains how to get one. Writing a care plan together has a format that works for the daily routine.