This care is the responsibility of your local Integrated Health Board (IHB – previously the Clinical Commissioning Group or CCG)

If you think your child has complex health needs, talk to a health professional like a specialist nurse.  If appropriate, they can support you to request a continuing care assessment for your child. This will look at all your child’s needs and the support you need to care for them.

A health assessor collects evidence of both your child’s met and unmet needs. They draw on the advice of the health and care professionals who are supporting your child. They have to judge what care your child needs that is over and above what would be expected for a child of the same age and stage of development. As part of this they will ask you and your child for your views on care and support. They will ask if you have any preferences about how this would be given. They use what is called a Children’s Decision Support Tool. This sets out ten areas of care called ‘care domains’:

• breathing
• eating and drinking
• mobility
• ability to control poos and wees (continence and elimination)
• skin care needs (skin and tissue viability)
• communication
• drug therapies and medicines
• psychological and emotional needs
• seizures
• challenging behaviour.

The ‘tool’ covers all aspects of your child’s life. This includes sections on home life and education. The assessment should always describe everything that matters.

The health assessor then makes a case to a panel of experts.  They look at the evidence and the recommendations and decide if your child has a continuing care need.

To prepare for your child’s assessment, we suggest:

• Keep a diary for a week recording your child’s care needs throughout the day and night. Record details of the time all these tasks take you on your worst day. This blank diary template may be helpful.
• Gather as much evidence of your child’s care needs as you can – from doctors, other medical professionals etc. SMA UK can provide a letter of support.
• Think about any safety issues that mean you or a carer must be present and watchful – e.g. if there is a risk your child may vomit when using BiPap and there is a danger of choking.
• Think about any emotional or psychological challenges for you or your child as well as physical challenges.

Your child’s medical team should provide information about your child’s condition.

The people who work with you to assess your child’s needs and the needs of you as their carer should keep you well informed about:

• who is doing what
• how long the assessment will take
• how any decisions and offers of care will be made to you.

If you are not sure what is happening at any stage, ask your assessor.

In England, once your child is of nursery or school age, the IHB should work with your local authority to coordinate the assessment. Together they should agree a wider package of continuing care than just health needs. This is part of the process to develop your child’s Education, Health & Care Plan .

If you need any advice or support, contact your local health visitor, G.P or any member of your medical team.

Local Authorities (LA) have a duty to provide certain services to disabled children who need support with daily living tasks.

If your child is not eligible for a health-funded continuing care package, they may be eligible for support via a Child in Need Assessment. This is through your LA.

Assessments look at what are called your child’s ‘eligible needs’. Depending on what these are, an assessment may lead to practical assistance in the home. This might be support with your child’s personal care, dressing or eating, as well as looking after your child overnight.

You have to request a Needs Assessment from your Local Authority. If you are not sure which LA you come under, type your postcode into this LA search bar. However, before you make a request, it is a good idea to have already thought through how you support your child and what needs you and your child may have.

We suggest you:

• Keep a diary for a week recording your child’s care needs throughout the day and night. Make sure to record details of the time all these tasks take you on your worst day. This blank diary template may be helpful.
• Provide as much evidence of your child’s needs as you can – from doctors, other medical professionals etc. SMA UK can provide a letter of support; contact our Support and Outreach Team.
• Cover any safety issues that mean you or a carer must be present and watchful. For example, if there is a risk your child may vomit when using BiPap and there is a danger of choking.
• Think about any emotional or psychological challenges for you or your child as well as physical challenges.
• Think about, and record, how much you are prepared to do to support your child.  Remember your need to sleep, attend to other caring duties (other children, elderly relatives), work and have your own social and leisure time

Once the LA has agreed to do a Needs Assessment for your child, a LA worker, will gather information for a single assessment. They will do this with with help from you, your family and other agencies.

To help them understand your situation, they will ask you about your child’s needs and your wishes. They will also talk to you about your child’s needs in an educational setting.

Your child’s medical team should provide information about your child’s condition.

You will find further information on Child in Need Assessments on your LA website (please see link above).

Even if your child does not have ‘eligible needs’ that have been agreed via a Needs Assessment (see the tab above), you can still request a Carer’s Assessment. Find out more and how to prepare on this page.

If your child has a continuing care package via health (see above), you are entitled to have a personal health budget to manage yourself. Your health assessor will talk you through this.

If your child has ‘eligible needs’ that have been agreed in a Needs Assessment (see above) and they will be met by your Local Authority (LA), you may be offered the option of a personal or individual budget.

In England, where efforts are being made to integrate funding for care, your personal budget may combine any funding from health, social care and education.

Once the amount of the personal budget has been agreed, you and your caseworker can plan how best to support your child’s needs using your personal budget. You may choose for the LA to organise your child’s care or you may choose to organise this yourself. In this case your child’s budget is given to you as a Direct Payment (DP). This means you are given the funds to employ carers or personal assistants (PAs) for your child. There are supporting organisations that can help with managing the employment and support of carers  and PAs. Your LA will be able to tell you which one(s) you could use locally.

All LA’s check and audit DP accounts. They will also want to know how you manage your DPs. They will want to see:

• what you spend, including all receipts. You need to keep careful records
• proof that the person you employ is allowed to work in this country
• what employment contract you have with them.