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

If your son or daughter has a learning disability, our guide to adult life with a learning disability covers health, work, benefits and friendships as well. This page is the part about planning for when you cannot carry on.

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. Trying things now helps them choose, and day services and things to do in the day sets out what a week away from home can hold. If 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, which matters for later.

If you are putting the conversation off because you do not want to frighten them, it need not be about you getting older. It can be about the life they would like in a few years, as any adult might plan.

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

   Plans should set out what happens in a sudden change or emergency, before any 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 must take steps to meet them without a fresh assessment (paragraph 6.115). It helps to know 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", whatever your finances. The Care and Support statutory guidance tells councils not to assume that others are willing or able to take up caring roles (paragraph 2.49), and that a care and support plan should say what happens in a sudden change or emergency, decided before a crisis (paragraph 10.44). 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 the day itself, and local authority funding how the council decides what it pays for. Respite care and respite for parents of a disabled adult cover building breaks slowly with the same person, which also shows your son or daughter that other people can help.

Supported living versus care at home sets the first two side by side, including how the money works for each. Shared Lives explains how the schemes work, and the NHS guide to Shared Lives schemes notes that some people move in while others visit by day or overnight. PrimeCarers does not provide any of these; ask the council about each.

Whatever the option, a gradual move gives your son or daughter time. Somebody who already has a support worker they like, or has spent weekends somewhere new, has people and places they know when the bigger change comes. 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, confirm an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 2 years, and interview them online. Carers are insured while they work. We do not check qualifications or training, and you cannot search carers by learning disability experience: what a carer says about it is on their own profile, so ask about it at interview. You and your son or daughter choose the person and agree the hours with them, and you can keep the same person for as long as it suits you both. 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

In a lasting power of attorney, a person chooses who can make decisions for them, about health and welfare, property and money, or both. The person must be 18 or over and must have the mental capacity to make it at the time, 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 understands what it is and whom they are choosing, they pick their own attorneys, and can name more than one, which helps with what happens later. Making decisions for a grown-up son or daughter goes through supported decision-making, LPAs and deputyship in more depth.

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. A property and financial affairs deputy deals with bills and bank accounts, and a personal welfare deputy with treatment and care. Gov.uk's guide to becoming a deputy explains who can apply. Under section 16 of the Mental Capacity Act the court prefers to make a single decision itself, and keeps 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. A deputyship is more likely to be needed for money in their own name, such as savings or an inheritance.

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. 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 how much of this work they do before you instruct them. Making decisions for a grown-up son or daughter explains how a trust sits alongside a deputyship or an LPA. 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 can therefore change what your son or daughter pays and which benefits they keep. 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.

A sister far away might be a trustee or a joint deputy and a regular visitor. A brother nearby might be the person the council rings first in an emergency, without giving care. A sibling who can do none of these is still 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, and Carers UK has advice for anyone caring now or expecting to, including siblings.

If a carer found through PrimeCarers starts coming in while you are still there, brothers and sisters can follow it themselves. The account owner can invite them from the My Family page, each with their own login and a level of access, such as Family Member to message the carer and book visits, or View Only. Everyone with Owner, Family Member or View Only access gets the carer's visit reports by email, so nobody is relaying news second-hand. Sharing care with family on PrimeCarers explains the details.

A one-page profile is one side of paper under three headings, described by Community Care, that goes wherever your son or daughter goes: a new support worker, a short break, a day service. Behind it, keep a longer about me document for the detail: the words, signs or pictures they use, how they show pain (which may be through behaviour), their routine hour by hour, and the help they need with eating, washing and sleep.

The future plan pulls together what the earlier sections decided. Update both documents each year, perhaps after their annual health check, and whenever something changes, such as the changes cerebral palsy can bring in adult life. A hospital passport covers the health part for a hospital stay (care at home for adults with a learning disability covers health at home), and writing a care plan together has a format for the daily routine.

You can get the free printable PDF to keep with this guide.