Health, Social Care and Education

The health, social care and education system for families living with a disabled child or adult in the UK is a minefield. In this section we share our experiences as well as bringing together information to help you navigate through NHS funding, social and respite care.
Information on this page comes from the NHS Choice’s website.

NHS continuing healthcare is the name given to a package of care that is arranged and funded solely by the NHS for individuals who are not in hospital but have complex ongoing healthcare needs.

Where can NHS continuing healthcare be provided?

NHS continuing healthcare can be provided in a variety of settings outside hospital, such as in your home or in a registered care home.

Eligibility for NHS continuing healthcare

To be eligible for NHS continuing healthcare, you must be assessed by a team of healthcare professionals (a “multi-disciplinary team”) as having a “primary health need”. Whether or not someone has a primary health need is assessed by looking at all of their care needs and relating them to:

  • what help is needed
  • how complex these needs are
  • how intense or severe these needs can be
  • how unpredictable they are, including any risks to the person’s health if the right care isn’t provided at the right time

Your eligibility for NHS continuing healthcare depends on your assessed needs, and not on any particular diagnosis or condition. If your needs change then you eligibility for NHS continuing healthcare may change.
You should be fully involved in the assessment process and kept informed, and have your views about your child’s needs and support taken into account. Carers and family members should also be consulted where appropriate.
A decision regarding eligibility should be made within 28 days of it being decided that the person needs a full assessment for NHS continuing healthcare.
If you are not eligible for NHS continuing healthcare, you can be referred to your local authority who can discuss if you may be eligible for support from them. If you still have some health needs then the NHS may still pay for part of the package of support. This is sometimes known as a “joint package” of care.

NHS continuing healthcare assessments

Clinical commissioning groups, known as CCGs (the NHS organisations that commission local health services), must assess you for NHS continuing healthcare .
To begin there is an initial checklist assessment, which is used to decide if you need a full assessment. However, if you need care urgently – for example, if you’re terminally ill – your assessment may be fast-tracked.

Initial assessment for NHS continuing healthcare

The initial checklist assessment can be completed by a nurse, doctor, other healthcare professional or social worker. You should be told that you’re being assessed, and be asked for your consent.
Depending on the outcome of the checklist, you will either be told that you don’t meet the criteria for a full assessment of NHS continuing healthcare and are therefore not eligible, or you will be referred for a full assessment of eligibility. Being referred for a full assessment doesn’t necessarily mean that you will be eligible for NHS continuing healthcare.
The professional(s) completing the checklist should record written reasons for their decision, and sign and date the checklist. You should be given a copy of the completed checklist. You can download a blank copy of the NHS continuing healthcare checklist from GOV.UK (PDF, 168kb).

Full assessment for NHS continuing healthcare

Full assessments for NHS continuing healthcare are undertaken by a “multi-disciplinary” team made up of a minimum of two health or care professionals who are already involved in your care. You should be informed who is co-ordinating the NHS continuing healthcare assessment.
The team’s assessment will consider your needs under the following headings:

  • behaviour
  • cognition (understanding)
  • communication
  • psychological/emotional needs
  • mobility
  • nutrition (food and drink)
  • continence
  • skin (including wounds and ulcers)
  • breathing
  • symptom control through drug therapies and medication
  • altered states of consciousness
  • other significant needs

These needs are then given a weighting marked “priority”, “severe”, “high”, “moderate”, “low” or “no needs”.
The multi-disciplinary team will consider:

  • what help is needed
  • how complex these needs are
  • how intense or severe these needs can be
  • how unpredictable they are, including any risks to the person’s health if the right care isn’t provided at the right time

If you have at least one priority need, or severe needs in at least two areas, you should be eligible for NHS continuing healthcare. You may also be eligible if you have a severe need in one area plus a number of other needs, or a number of high or moderate needs, depending on their nature, intensity, complexity or unpredictability.
In all cases, the overall need, and interactions between needs, will be taken into account, together with evidence from risk assessments, in deciding whether NHS continuing healthcare should be provided.
The assessment should take into account your views and the views of any carers you have. You should be given a copy of the decision documents, along with clear reasons for the decision.
You can download a blank copy of the NHS continuing healthcare decision support tool here.

Fast-track assessment for NHS continuing healthcare

If someone’s condition is deteriorating quickly and they are nearing the end of their life, they should be considered for the NHS continuing healthcare fast track pathway, so that an appropriate care and support package can be put in place as soon as possible – usually within 48 hours.

Care and support planning

If you are eligible for NHS continuing healthcare, the next stage is to arrange a care and support package which meets your assessed needs.
Depending on your situation, different options may be suitable, including support in your own home and the option of a personal health budget. If it is agreed that a care home is the best option for you, there could be more than one local care home that is suitable.
Your CCG should work collaboratively with you and consider your views when agreeing your care and support package and the setting where it will be provided. However, they can also take other factors, such as the cost and value for money of different options, into account.

NHS continuing healthcare reviews

If you are eligible for NHS continuing healthcare, your needs and support package should normally be reviewed within three months and thereafter at least annually. This review will consider whether your existing care and support package meets your assessed needs. If your needs have changed, the review will also consider whether you are still eligible for NHS continuing healthcare.

What is a Personal Health Budget?

A personal health budget is an amount of money to support your identified health and wellbeing needs, planned and agreed between you and your local NHS team. The aim is to give people with long-term conditions and disabilities greater choice and control over the healthcare and support they receive.
Personal health budgets work in a similar way to the personal budgets that many people are already using to manage and pay for their social care.
Together with your NHS team (such as a GP) you will develop a care plan. The plan sets out your child’s personal health and wellbeing needs, the health outcomes you want to achieve, the amount of money in the budget and how you are going to spend it. You can use a personal health budget to pay for a wide range of items and services, including therapies, personal care and equipment. This will allow you more choice and control over the health services and care you receive.
You don’t have to change any healthcare or support that is working well for you just because you get a personal health budget, but if something isn’t working, you can change it.

Can I have a personal health budget as well as a personal budget for social care and support?

Yes. If you already have a personal budget for care and support from social services and your NHS team agrees, you can also have a personal health budget and ask for both to be combined.

Do I have to have a personal health budget?

No. If having a personal health budget does not work for you, your local NHS will provide the care you need as it has always done.
What is the difference between a personal health budget, a personal budget, an individual budget and a direct payment?

  • A personal health budget is for your NHS healthcare and support needs.
  • A personal budget is for your social care and support needs.
  • An individual budget includes your social care and support needs plus other funding, such as independent living.
  • A direct payment is one way of managing these budgets, where you get the cash to buy the agreed care and support you need.

For more information visit the peoplehub website, where people with a personal health budget and their families and carers can talk about their personal health budget experiences and also NHS Choices Website.
Personal Experience
“We have had a personal health budget for our daughter for close to two years now. Having had a bad experience of care from the charitable sector, we wanted to ensure that our daughter had the care that she deserved.  We wanted a package that was child focused and individualised which not only met her needs but also the changing needs of our family.  Personal health budget gives us freedom to use NHS funds in a way which meets our daughters needs, give her quality of life but also to expand her social networks and friendships. We are so thankful that this is available to us and peoplehub a community interest company is working to improve access to PHB, and in particular children’s PHBs which is emerging. This is the third Individual Health and Outcomes Plan (IHOP) I have written and it is getting easier, because when it’s something that has such a positive impact on a young disabled person, getting it right is essential.”

Having a child with a disability can feel like a challenge, but you are not alone. Many families are having to navigate through what seems like an ever-changing world due to changes in legislation and the way in which services are provided across the country.
Parenting a child with CDKL5 is not something you can change, but the experience that you, your family and your child has can be enhanced by ensuring that you have the best support that is available.  Every local authority operates to their own policies, and generally a local authority should make sure that children with disabilities are identified early and that effective support is in place for them to ensure that the families are kept at the centre of discussions and decision making for their children.
Under Section 17 of the Children Act 1989 it states that:

(1)  It shall be the general duty of every local authority (in addition to the other duties imposed on them by this Part)—

(a)  to safeguard and promote the welfare of children within their area who are in need; and

(b)  so far as is consistent with that duty, to promote the upbringing of such children by their families,

by providing a range and level of services appropriate to those children’s needs.

Section 10 goes further to explain that:

For the purposes of this Part a child shall be taken to be in need if—

(a) he is unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining, a reasonable standard of health or development without the provision for him of services by a local authority under this Part;

(b) his health or development is likely to be significantly impaired, or further impaired, without the provision for him of such services; or

(c) he is disabled,

and “family”, in relation to such a child, includes any person who has parental responsibility for the child and any other person with whom he has been living.

It is probably useful to stress at this point that as local authorities operate to their own thresholds and regulations, that they also provide services in different ways. However, it is likely that your child will meet thresholds and you and your family will be supported by the local authority’s Children with Disabilities Team. It is important to note however that what one family say in Cheshire is getting in terms of a care package might be totally different to what someone in Essex might be getting for example.

Normally unless a child meets the criteria for NHS Continuing Healthcare (see our section on this) the local authority will not normally provide a statutory service until your child is 3-5 years old.  However, this does differ across the country.  For some children and their families they maybe supported under the Early Years services or Common Assessment Framework, which is the level that sits below social care and the support is normally provide by a chlidren’s centre, a child developmental centre or opportunity group.

Changes to the education system and, in a bid to provide coordinated services, the rules changed with the introduction of the Children and Families Act 2014 in September 2014.  This new Act ensures that support is coordinated and this is done with the introduction of Education, Health and Care Plans (EHCP) and replaces the former statement of educational needs.  Local authorities have 3 years in which to switch children and young people currently accessing a statement of education needs to EHC Plans. We will not go into detail here, as there are a number of great resources which have been created in order for you to understand this process. Mencap’s Young Ambassadors have been working with the Department of Education to make easy read guides about special educational needs and disabilities (SEND) for parents and children and young people.

To find out how you can get SEND support visit Mencap’s website

Caring for someone that you love with a disability can be very hard and often lonely. As parents we find it hard to let go from our duties of providing the vital care that we give to our children. Being a parent is arguably the hardest job going, add in the role of a carer too and then things can get really hard. We at CDKL5 UK realised early on that getting the chance to rest, regroup and recharge was vital to helping us keep up the important job of raising our children and respite care gives us that opportunity.
What is respite care?
Respite care is defined as the provision of short-term accommodation in a facility outside of the home in which a loved one maybe placed. This provides temporary relief to those who provide the care. The value of respite can never be undervalued. It has proven to reduce stress in families and enhance the families’ coping abilities. It increases the caregivers well being allowing opportunities for social activities and involvement outside of the home.
How can we access respite care?
Your Local Authority is responsible for providing any non medical care services that your child is assessed as needing. This includes access to play schemes and respite care. You can apply for respite care by contacting your local authority.
Find your Local Authority here
Your Local Authority social services department will be required to carry out a needs assessment. If you are caring for a child you will be able to also ask for a carer’s assessment for you and your family. The assessment will take into account three key areas

  1. The child’s developmental needs
  2. The parents or caregivers capacities to respond appropriately to those needs
  3. The wider family and environmental factors

At CDKL5 UK we know that our children are the most important things to us. They are to be loved, cherished and protected. For us as parents to be able to do that properly we must acknowledge that it can be the hardest but most rewarding job going.
We feel that respite care is a positive tool and should be seen as a valuable part of our care package. Being able to have short breaks, in the knowledge your child is being cared for and having fun, is priceless and allows us to continue to be the greatest parents we can be.
Personal Experience
“Initially I was very skeptical about sending my child away, because that is just what it felt like ‘sending them away’. Huge feelings of guilt, is what I remember the most thinking that in some way I had failed as a mum. I had gotten used to that feeling of tiredness and just being weary, it was the norm and I didn’t know any different. We love our daughter more than we can say and without even noticing her care and medical needs had just taken over. It wasn’t a noticeable thing but something that happened gradually over time as she grew so did her needs. We had less time for friends and drifted apart as our constant answer to invites was always a polite decline. And eventually we found our ‘date nights’ were almost none existent and turned into ‘sleep nights’.
Things for us came to a head when we had our second child and Respite became a more viable option. Don’t get me wrong I still felt huge feelings of guilt but we decided as a family to give it a try. The process itself was very seamless and our local authority social service team couldn’t have been more helpful. We were assessed as a family and all of our needs and feelings were taken into account. Once the process was complete our daughter was awarded two overnight stays a month at our local children’s respite centre. She has a key worker who knows her ‘almost as well as us’ and has a ball when she stays out.
Looking back for us as a family it was one of the hardest but most rewarding decisions we have made. Our daughter loves the attention and social interaction away from the home that she wouldn’t otherwise get, especially away from her annoying little brother. We get time with our son and each other guilt free. We physically get a rest from the care aspects of being a special needs family and the rest we get whilst she is being spoilt allows us to be super parents when she comes home. My only guilt now is that we didn’t do it sooner.”

An education, health and care (EHC) plan brings your child’s education, health and social care needs into a single, legal document. Your child must have special educational needs to be eligible for a plan.
From 1 September 2014 EHC Plans will replace statements of special educational needs. If your child has a statement, they will be transferred to an EHC plan.
This is part of national Special Educational Needs and Disabilities (SEND) reforms; changes to the law for children and young people with special educational needs and disabilities. The new law will result in changes to the way you and your child receive support from your local council, health and social care services and your child’s nursery, school or college.
It should be noted however, the time tabling for this to happen, ie if your child already has a statement of educational needs, is determined by each Local Authority but they have to be transitioned within 3 years.
Contact A Family have produced an excellent range of fact sheets on the new system and they are available here.
Changing from old system to the new
Education, Health Needs Assessment factsheet
Education, Health Needs Plans factsheet
Preparing for Adulthood factsheet


When caring for a child with CDKL5 you may find that you need specific equipment meet their needs, ensure that your child gets the most out of life and keep them safe.
In the UK, the NHS and your Local Authority can provide specialist equipment. Generally equipment in the home, such as feeding chairs, beds, hoists and bathing aids will come via the Occupational Therapist (OT) within the Local Authority.  They will also be the point of contact when applying for a Disabled Facility Grant (DFG).
What is a Disabled Facility Grant?
A DFG is an amount of money that is available if you need to make adaptions to your home. For children this is a non-means tested grant with a maximum grant of £30,000 available.  Families have used these grants, which Local Authority manage, for extensions to property – to provide a bedroom and or wet room, through-floor lifts, or to bring the child’s bedroom to a ground floor. For more information about DFG click here
The DFG will not affect any benefits you may get.
Medical equipment.
For equipment which is needed for nursing or medical care such as feeding pumps, SAT Monitors, suction machines etc these are provided by the NHS and in some case can be prescribed by the GP.  Your local Consultant Pediatrician or Community Nurse will be the point of contact for this equipment.
Wheelchairs can be accessed through your local Wheelchair Services, and generally accessed via the OT or if your child is in education there will be a point of contact at school.
Many of our children have specialist beds and we have found that some Local Authorities will pay for these beds, however, sadly not all.  Fortunately there are many charities that will help with beds for example Newlife Foundation for Disabled Children . So if you are struggling for any equipment needs we recommend contacting them. They also have a loan scheme and equipment can be borrowed for a period of time.
Unfortunately not all equipment is going to be provided by statutory agencies, and therefore you will find yourself having to purchase items.  Fortunately, equipment which is designated for a disabled child or adult attracts a zero rate VAT.  It is the responsibility of the supplier to complete the exemption documentation, and to do that they will ask you to fill in, sign and send back a proforma.  For further details about the scheme click here.
When your child reaches 3 they will then qualify for the mobility element of the Disability Living Allowance (DLA).  By qualifying for high rate you will be able to apply for a vehicle from Motability Scheme.  You will be given and allowance, paid directly to Motability, in exchange for a car.  The scheme allows for you to have a car for 3 years, or 5 years if you have a Wheelchair Adapted Vehicle (WAV).  If you decide to go for a high specification car then you will need to contribute in the form of a advanced payment.  For more information about the scheme click here.