Depending on your child's needs, you can start planning how your disabled child will move into adult services when they are about 14. Some services stop at a certain age. Different services will stop at different times. This is often called ‘transition’.
You and your child will need to make a plan for what their life might look like when they turn 18. This will depend on what you and your child want and what they can do.
Your school should help your child to learn skills that prepare them for adult life. If your child has an Education, Health and Care (EHC) plan, you should have a chance to review this every year. You can talk about the plan and your child’s future.
You have the right to an assessment to see what your child’s needs will be when they become an adult. Ask your local authority for a transition assessment. These are similar to adult social care needs assessments.
Adult medical services are different. You and your child will probably need to deal with more specialists. Your GP may be the only person who has an overview of your child and their care.
Make a plan before your child turns 14. Talk to your paediatrician about the move to adult care. List the specialists who will be taking over your child’s care and agree a strategy. A meeting with you, the paediatrician and the adult specialists may also help, but could be hard to arrange.
Warning Next of kin
Being your child’s ‘next of kin’ on forms does not give you any power to make decisions for your child.
The right to make decisions for your child
Being able to safely make decisions about finances, benefits and care is called ‘mental capacity’. Mental capacity starts at 16. But, legally you can make most decisions for your child until they are 18 if both of the following apply:
your child, aged 16 or 17, does not have mental capacity for the specific decision
you have what the law calls ‘parental responsibility’
If you do not think that your child is able to make their own decisions when they turn 18, you will need a legal document that gives you the power to make decisions on their behalf. This will usually be a deputyship from the Court of Protection.
The Court of Protection will also hear cases for children aged 16 to 17. But you will not need this unless any of the following apply:
the local authority is involved
there is a dispute
it is a decision which legally does not fall under parental responsibility
This is only useful if your son or daughter is over 18 and has mental capacity. A power of attorney could give you the right to make decisions for them if they then lost mental capacity. If you have power of attorney, you have the right to make decisions for your child if they lose capacity.
Your child is 18. They can safely make decisions about their care, benefits and money. But their condition means that they might not in the future.
You and your child decide that your child should start making their own decisions. Your child makes a power of attorney. This means that if they stop having mental capacity because of their condition, you will have the right to make decisions for them.
Banks should make adjustments to help meet your disabled child’s needs. These could include changing their communication style, providing quiet meeting spaces and bank accounts without an overdraft.
If you feel that your child is not ready to manage their benefits when they’re 18, you could apply to be their appointee. This can be helpful if they have ‘mental capacity’, but do need support with benefits.
Start talking with the people who fund your child’s care at home. This could be your local authority or clinical commissioning group. Ask for a transition assessment. Your local authority may have a transition services team.
The amount of care
Adult services are funded in a different way to children’s services. This can mean that the services can change or reduce when your child moves to adult services. The amount of support you and your child will get usually depends on a transition assessment by your local authority. If you think that your local authority is not meeting your child’s needs, you have the right to challenge the assessment.
If you ask for an amount of care, be prepared for your local authority to ask you to take less. Negotiate. Be clear about what you and your child want and why you need it. Never say you’re managing if you are not.
If you ask for an amount of care, your local authority may ask you to take less. Be prepared to negotiate. Be clear about what you and your child need and why.
Paying for care
Adults are normally expected to pay for some of their social care. How much will depend on your circumstances.
If your child has complex health needs that cannot be met by the local authority, the NHS may pay for this care. This is type of funded care is called NHS continuing healthcare.
Young people who are eligible for NHS continuing healthcare will get a continuing care package to help them move into adult services. Ask your GP or social worker for an assessment to find out if your child is eligible.
Think about the kind of place your child will need to live in. If your child will need an accessible place to live, start looking for accessible housing near you or for landlords who will let you make adaptations to the property. Whether the landlord lets you make changes may depend on the adaptations needed.
In sheltered housing, people have their own flat. There is usually a warden who can give limited support. Only services which provide personal care as an additional service come under the Care Quality Commission.
Assisted living, sometimes also called ‘extra care housing’, is similar to sheltered accommodation but there is support available for everyday tasks such as laundry. The Care Quality Commission inspects assisted living schemes.
Care homes and residential care
Care homes and residential care are for people who need help with most daily tasks, including personal care. If your child does not want to live in a care home or residential care, find out what support the local authority can provide to help them live independently.
If you’re thinking about a care home for your child, start looking for ones which you think would be good for your child. Talk to who is funding your care about what they recommend and what’s available. This could be your social care or health care worker. Think about what your child needs, including:
how often you might visit and how near the care home is to where you live
how the age and needs of the other people there will affect your child
your child’s social life
Ask about what a typical week might look like and the care package that your funding will cover.