Health And 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 are 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. We’ve covered the education bit here (link to understanding the education system). 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 are perhaps now want to know a bit more about what all those reports and meetings that your parents and you have been involved with over the years have been all about.
Health Continuing Care Packages for Children 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 will have had what’s called a ‘continuing care assessment’. This looks at all the things you need help with so that you can get on with life every day, and what support your parents need to care for you. Once you’ve had the first assessment and it’s been agreed what help health will fund, there are regular reviews, so its likely you would have been involved in these in some way.
For these assessments, a health assessor looks at what care you need that is 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 will 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 And 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 will fund, your parents/guardians 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 / guardians 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.