Health & Social Care
Many of you will be used to the system that gets you and your family the additional support you all need because of the impact of your SMA - at home, at school and when you're out and about. For some of you, though, this may not be so familiar and you’re only just starting to need extra support.
This section gives you a quick run-down of how the health and social care side of things works up until you’re age 18, so although the words 'child' and 'children' come up quite a lot, it does mean teenagers as well. We’ve covered the education bit here. You may not come across, need or be eligible for all of this support, but at least you’ll know about the range of possibilities. It may also be of interest to those of you who are already in this system and perhaps now want to know a bit more about what all those reports and meetings that your parents and you've been involved with over the years have been all about.
Page last reviewed / updated: March 2021
Next review due: March 2022
Health Continuing Care Packages for Children and Young People with Complex Needs
This care is the responsibility of your local NHS Clinical Commissioning Group (CCG).
If you have what’s considered to be complex health needs, you'll have had (or you'll be referred for) what’s called a ‘continuing care assessment’. This looks at all the things you need help with so that you can get on with everyday life. It also looks at what support your parents need to care for you. Once you’ve had the first 'full' assessment and it’s been agreed what help the CCG will fund, there are regular reviews to check that the level of support you receive is still meeting your needs. It's likely you'll be (or you'll have been) involved in these in some way.
For these assessments, a health assessor looks at what care you need that's over and above what would be expected for someone of your age and stage of development. They talk to the professionals involved in your care, your parents and, as soon as you’re old enough, you. As part of this they'll ask you and your parents for your views on care and support and any preferences you have.
If you want to know more about the detail of how this works, follow this link to the Children’s Section: Health Continuing Care Packages for Children with Complex Needs.
In England, the CCG should work with your local authority to coordinate your assessment and agree a wider package of continuing care than just for your health needs. This is as part of the process to develop your Education, Health and Care Plan.
Local Authority Child In Need Assessment
If the Health Authority doesn’t consider you to have ‘complex health needs’, you may have support via what’s called a ‘Child in Need Assessment’. This is done through your Local Authority. These assessments look at what are called your ‘eligible needs’ and, depending on what these are, may mean you get practical assistance at home, such as support with your personal care, dressing or eating or being looked after overnight.
If you want to know more about the detail of how this works, follow this link to the Children’s Section: Local Authority Child In Need Assessment.
Local Authority Carers Assessment
Anyone who provides regular unpaid physical and / or emotional support to a family member, is a carer who can request a carer’s assessment from their Local Authority (LA) to see if they can get support for their caring role. Someone in your family may well have applied for this. They can do this even if you don’t have ‘eligible needs’ that have been agreed via a Child in Needs Assessment.
If you want to know more about the detail of how this works, follow this link to the Children’s Section: Local Authority Carers Assessment.
Personal Budgets & Direct Payments
If you have a continuing care package via health, you’re entitled to have a personal health budget which your parents / guardians will manage for you.
If your Local Authority (LA) has agreed you have ‘eligible needs’ that they'll fund, your parents may be offered the option of a personal or individual budget.
In England, a personal budget may combine any funding from health, social care and education.
Your parents may choose for the LA to organise your care or they may choose to organise this themselves. In this case your budget is given to them as a Direct Payment (DP). And they can then use this to employ carers or personal assistants directly for you.
If you want to know more about the detail of how this works, follow this link to the Children’s Section: Personal Budgets and Direct Payments.