When your child is diagnosed with cerebral palsy, your NHS health team will assess your child and provide the necessary health and therapeutic support to make living with cerebral palsy as manageable as possible. This might include a paediatrician, physiotherapy, occupational therapy, speech and language therapy and any necessary medical equipment to help with mobility and communication.
However, you may be able to access more support through your local authority, charities and the Government.
With the help of your occupational therapist, you may wish to explore the wide range of assistive technologies, mobility and communication aids designed to make living easier.
Below we provide an overview of what additional care and assistance is available:
What support is available from my local authority?
It is the responsibility of your local authority (social services or children’s services) to assess whether you require any support with non-medical care.
This is done through a ‘needs assessment’ which takes into account the needs of your child and the rest of your family. If you are eligible to receive non-medical support, it could include:
- Short break (respite) services to relieve your responsibility for caring for a child with cerebral palsy for short periods
- Access to free day care / play schemes
- Care and assistance in your home
- Some mobility, home adaptations and disability equipment
- Financial help, such as money to help you travel to and from hospital or to therapies.
If your child is eligible to receive these types of support services, you can request direct payments from your local authority. You can then arrange the services yourself.
The needs assessments will also be used to determine whether your child has any special educational needs. If your child is assessed as having complex additional needs, then your NHS care team – working together with the local authority – will agree an Education, Health and Care Plan (EHC) with you and your child that is in place until they’re 25. See also Support with education and work.
What support is available from charities?
As well as charitable organisations that provide therapy and practical and emotional support, several trusts exist that provide grants to low-income families raising children with disabilities. These organisations are easily found online, or you can ask your child’s key worker.
See also Cerebral palsy support groups.
What benefits and tax credits are available from the Government?
1. Disability Living Allowance for children
If you have a child with cerebral palsy who is under the age of 16, you may be eligible to claim a Disability Living Allowance (DLA) to help with the extra costs of looking after them. This benefit is tax-free and not dependent on income. You can use the DLA claim form to check your eligibility and make an application.
The allowance has a care component and a mobility component. You cannot claim the mobility component for a child under three years old, but there is no age restriction on the care component. Please note that it is not usual to claim for a child under three months old.
2. Personal Independence Payment for adults aged 16-64
If you or your child is over 16, you can apply for a Personal Independence Payment (PIP), a tax-free benefit known formerly as Disability Living Allowance (DLA) for adults.
3. Carers’ Allowance and Carers’ Credit
As a carer of a child or adult with cerebral palsy, you may also be entitled to direct financial support from the Government, such as a Carers’ Allowance, Carer’s Credit, certain employment rights and respite care/short breaks. You can find out more about your eligibility from Carers UK on 0808 808 7777 or on the government website.
How to find out more
You can find out more about the benefits and credits available to you at the Department for Work and Pensions website and from the charities Contact a Family and Disability Rights UK. You can also call your local Citizens Advice Bureau for help and advice.
What is a Disabled Facilities Grant?
Your local authority may offer a Disabled Facilities Grant, enabling you to make adaptations to your property to help your child’s mobility and to make daily living and access easier. If the application is made for the benefit of a child or young person under the age of 19 then it is not means tested (i.e. your income does not affect your eligibility). Contact your local authority for details.
What home adaptions are suitable for people with cerebral palsy?
Depending on the severity of your child’s cerebral palsy, you may need to make adaptions to your home.
Carefully planned adaptations can vastly improve the quality of life for you and your child, resulting in improved access and independence around the home, especially for those using walking frames, wheelchairs and other mobility aids.
Your occupational therapist will be able to advise on the most appropriate adaptations, but they could include:
- Widening doors and making access easier
- Fitting ramps or creating dropped curbs
- Fitting a stair lift
- Creating safe spaces, free from hazards
- Creating a wet room or walk-in shower to make bathing easier
- Adapting lighting for those with visual impairments
- Making outdoor space safe (gardens, balconies etc.)
- Improving heating systems
- Converting a downstairs room to an accessible bedroom with bathroom
- Lowering facilities so that a person in a wheelchair can reach them.
These adaptations may or may not form part of your support package from the local authority after a needs assessment.
You can also apply for various grants and support from your local authority, such as the Disabled Facilities Grant (DFG).
Please contact your health visitor/social worker or local authority for information on the DFG and other housing grants, or visit Disability Rights UK. Charities may also be able to help low-income families.
What communication aids are available for people with cerebral palsy?
Children with cerebral palsy who struggle to speak – or who cannot speak – will benefit from learning to use augmentative and alternative communication (AAC).
This is a term used to describe a range of communication methods that aid speech, from simple signing to highly complex technology.
- Unaided AACs (low tech) include learned body gestures, facial expressions, pointing, sounds and signing to communicate.
- Aided low-tech AACs include pen and paper, word and alphabet boards, books and charts with symbols, pictures or photos.
- Aided high-tech AACs include computers, such as laptops, tablets and mobiles, with software designed to support communication, or specialised devices that generate speech called voice output communication aids (VOCAs).
If your child has difficulty pointing or pressing buttons, solutions include keyguards, pointers and eye-gaze controllers.
Children who cannot speak may find communication passports particularly valuable. The passports introduce themselves to others and provide information on the best way to communicate, such as how they say yes or no. They are particularly useful in nursery and school settings but need to be updated regularly.
Your child’s speech and language therapist can advise on the most appropriate communication aid for your child or young person as they grow and develop.
Your NHS team may lend the necessary equipment, or your local authority may include the necessary aids in its support package (if your child is eligible). Otherwise grants for communication aids may be available through charities.
What mobility aids are available for people with cerebral palsy?
Mobility aids for people with cerebral palsy range from simple orthoses and walking frames to specialist powered wheelchairs. Finding the most appropriate and comfortable mobility aids for your child or young person is vital for their growing independence, self-esteem and quality of life.
The right mobility aids (also called assistive devices or assistive technologies) will depend on your child’s age, the muscle groups/limbs affected and the severity of your child’s condition. They could include:
Orthoses – Tailored braces (hard or soft) that support and strengthen affected areas, such as feet, ankles, knees, legs, hips and back, and which are prescribed and fitted by your child’s health team such as an orthopaedic surgeon, physiotherapist and orthotist.
Walking sticks – Tailored or off-the-shelf walking sticks can be adjusted to height and some can be folded. They are easy to use indoors or out and can help with standing, walking and weight bearing. Some have tripod bases to provide more support, and they are available in a variety of materials and at a range of prices.
Crutches – Forearm crutches can help those who need help to balance while walking.
Standing aids – Weight-bearing standers enable a child or young person with cerebral palsy to stand for short or long periods of time. They are beneficial if sitting is uncomfortable or if they need additional support when standing. There are different types available to suit your child’s needs and condition.
Using a stander has additional benefits, such as stretching the leg and hip muscles, strengthening muscles, improving bowel and bladder functions and enabling the user to join in with others who are standing.
Walkers – A variety of four-post walkers are available to help those who struggle to walk or bear their own weight because of problems with balance and posture. They also help to build muscle and bone strength.
Two-wheeled walkers (with four posts) enable slower speeds and more control for those who struggle to maintain balance.
Some walkers include built-in seats to enable the user to go from sitting to standing, and others include chest supports to help control the trunk.
For those who cannot support their full body weight, suspension walkers include a harness attached to an overhead frame. A motorised lift adjusts what weight is borne.
Wheelchairs – If you or your child cannot walk, or cannot walk for sustained periods, then a wheelchair is an ideal mobility aid. Wheelchairs come in a variety of designs and prices, but your first choice is between a powered or manual wheelchair.
Manual wheelchairs are cheaper than powered wheelchairs, but require the user to have some strength in their upper body and arms. Some will recline for comfort, or fold down for easy storage.
Powered wheelchairs are easy to use and come with several different features depending on your needs and budget. They suit those with little upper body control or strength. They are heavier than manual wheelchairs but enable you to get about quickly and easily.
Before buying a wheelchair it’s important to consider how, where and when it will be used and how suitable it is in all of these circumstances. You should also consider its weight, flexibility, functions, cost and comfort.
See also Wheelchair provision and wheelchair skills training below.
Hoists/Transfers – Hoists or lifts can come as slings, seats and platforms to help people with cerebral palsy to move around spaces where it’s difficult to operate wheelchairs or walkers. They can be manual or powered and are particularly helpful for carers wishing to protect their backs when lifting and transferring those they care for.
Scooters – Scooters are an alternative to powered wheelchairs but can be difficult to transport in other vehicles, unless they are specifically designed to be portable. They come with three or four wheels, armrests, swivel seats and storage, and can be driven forward or in reverse.
The size of the three-wheeled scooter means it can be used inside and in small spaces but offers less stability than a four-wheeled scooter.
Wheelchair provision and wheelchair skills training
The NHS has a wheelchair service that your physiotherapist can tell you about. The service will assess and determine what type of chair and mobility equipment you or your child is entitled to on the NHS.
The charity Whizz-Kidz provides young people with mobility aids that are not available from the NHS. Whizz Kidz and Go Kids Go! also provide free wheelchair skills training and courses.
Are we eligible for mobility funding and disabled parking?
You may be eligible for the Motability Scheme to buy a motorised wheelchair if your child gets the high-rate mobility component of disability living allowance (see above).
The Motability Scheme enables disabled people to use their government-funded mobility allowance to lease a new car, scooter or powered wheelchair.
If your child is over two and has difficulty walking, you may also wish to apply for disabled parking (also called Blue Badge). If you are a disabled driver, you may be eligible for road tax exemption and disabled parking.
You can check your eligibility for disabled parking and road tax exemption at the Government’s website.
What other aids or assistive technologies are available to help with daily living?
Your occupational therapist will be able to advise on the assistive technologies and aids available to help with daily living, other than mobility and communication aids. This might include:
- Aids to assist with eating and drinking, such as cutlery and cups with special handles
- Special mattress and aids to help sleep
- Special bathroom equipment and bathing aids
- Assistive technology designed to help with housework, such as aids to help you reach for, turn and move items and mounted switches to help you use electronic devices
- Specialist chairs, tables and desks.