• Prepare well in advance and ensure that your paediatric team and any other professionals involved with your child are aware that you need to plan childcare as they may be required to write assessment reports to support an Education Health and Care Plan (EHCP) which will identify the specific support which your child may need in a preschool setting. You are entitled to ask for an Education Health and Care Plan for your child if they meet the threshold. See IPSEA | Independent Provider of Special Education Advice for information on how to apply to your local authority for an EHCP. This process can take many months and so you will need to allow plenty of time to make suitable childcare arrangements.  
• IPSEA, an independent provider of special education advice (known as IPSEA) is a registered charity (number 327691) operating in England. IPSEA offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND). They also provide training on the SEND legal framework to parents and carers, professionals and other organisations. IPSEA has produced a checklist which sets out in layman’s terms the elements of an EHCP that must be considered when writing an EHCP. EHC Plan Checklist
• Once you have identified a childcare potential provider, ensure that the provider genuinely wants to and is able to look after and support your child safely and well. Being able and willing to “cope” is not good enough. All childcare settings should be registered with the local authority and monitored by Ofsted. The setting should have a policy on special needs.
• Check recent Ofsted inspections for the setting’s quality of care and its ability to meet special educational needs 
• If the setting is a nursery, check to see if there is a designated Special Needs advisor either at the nursery itself or part of the organisation or managing authority
• Ask if the setting has experience of looking after children with cerebral palsy or motor disorders and how they would ensure that your child is safe, happy and included in the daily activities
• Once you are sure that the setting is the right one for your child, arrange to spend a few days with you child there to get a feel for how your child will be cared for.
• It may be necessary for the setting’s staff to receive training in specific aspects of your child’s care and early years education. This can be provided by a combination of yourself, the therapists from the local paediatric team, paediatric nurse and special needs teachers. These professionals may also be involved in ongoing support for your child and the setting that he/she attends. 

There are a number of different educational routes available, depending upon your child’s specific needs and what you are able to access:

• Mainstream schools – where your child will be taught alongside children with and without additional needs. Your child will be taught the national curriculum, and your child may be able to get special educational needs (SEN) support or an education, health and care plan (EHCP). Some mainstream schools have specialist departments that support disabled children.
• Specialist Schools – have teachers who are more experienced supporting children with additional needs, and have specific specialist equipment and facilities as well as smaller class sizes. Special schools also follow the National Curriculum but often also teach more practical life skills.
• Dual Registration – Sometimes your child can receive a place at two separate schools, either a mainstream and a specialist school or two specialist schools, would enable your child to benefit from both settings.
• Home Schooling – you may decide that home schooling is the best option for your child, and you may be able to get support from your local authority. For more information on educating your child at home, see Educating your child at home – GOV.UK

When considering a school for your child, please:

• Visit a number of schools so that you can see their resources and facilities, meet the teachers, meet and speak with the Special Educational Needs Co-ordinator (SENCO). You should consider visiting several times, with and without your child, and ensure that you visit during school time so that you can see the setting in action.
• Speak with other parents of children with additional needs about their experiences with that school
• Meet with the SENCO
• Ask questions and ask if the school has experience of looking after children with cerebral palsy or motor disorders and how they would ensure that your child is safe, happy and included in the daily activities
• Once you are sure that the setting is the right one for your child, arrange for a taster day or half day for you and your child to get a feel for how your child will be cared for.

Check recent Ofsted inspections for the setting’s quality of care and its ability to meet special educational needs.

When visiting a new potential school for your child, here are some questions you may wish to ask:

• Ask if the school has experience of looking after children with cerebral palsy or motor disorders and how they would ensure that your child is safe, happy and included in the daily activities
• Ask if the school specialises in supporting children with a particular condition or disability
• Ask about class size
• Ask how the school will let you know how your child is doing and the progress he or she is making
• Ask about what a typical day might involve and ask what the children in the year group your child would be joining are doing this term
• Ask what the school does well and areas that it is developing
• Ask how the school communicates with parents and how often it does so
• Ask how parents can communicate with the school
• Ask if the school supports parents (perhaps with workshops on specific topics) and how it provides this and how often
• Ask about the qualifications of their staff, what specialists they have on staff, how often children have access to those specialists, and how they ensure that their staff is able to continue with their professional development

If you are considering a mainstream school for your child, here are some questions that you may wish to ask:

• Ask if the school has experience of looking after children with cerebral palsy or motor disorders and how they would ensure that your child is safe, happy and included in the daily activities
• Ask if the school has made any exclusions and if so, how many
• Ask how the school would welcome and settle your child and if there is something specific they feel they would like to do for your child
• Ask about how the school would meet your child’s needs and who would provide support for your child (would it be a teaching assistant, the SENCO or someone else)
• Ask how teachers teach children with different needs in the same class
• Ask about the progress children with additional needs make at the school
• Ask how the school will let you know how your child is doing and the progress he or she is making
• Ask about the qualifications of their staff, what training staff have of supporting a child with cerebral palsy, what specialists they have on staff, how often children have access to those specialists, and how they ensure that their staff is able to continue with their professional development
• Ask whether the school uses outside agencies for support, and if so, who
• Ask what the school does well and areas that it is developing
• Ask how the school communicates with parents and how often it does so
• Ask how parents can communicate with the school

There are usually two levels of support for children with Special Educational Needs:

• SEN support which mainstream state schools must provide
• Education, Health and Care plans (EHCPs), for when SEN support is not enough for your child to get the support that they need.

Please note that private schools may manage SEN in a different way. Every local authority will have its own process. For more information, please see: SEND: guide for parents and carers – GOV.UK

EHCP stands for: Education, Health and Care plan (“EHC plan”) which is a legal document which describes a child or young person’s special educational needs, the support they need, and the outcomes they would like to achieve.

The special educational provision described in an EHC plan must be provided by the child or young person’s local authority (“LA”). This means an EHC plan can give a child or young person extra educational support. It can also give parents and young people more choice about which school or other setting the child or young person can attend. 

An EHC plan can only be issued after a child or young person has gone through the process of an Education, Health and Care needs assessment. 

To get an EHCP, you will need to apply for an EHC needs assessment from your local authority.

If a local authority (“LA”) is requested to carry out an EHC needs assessment by a parent, young person, school or college, they must consider: 

• whether the child or young person has or may havespecial educational needs (“SEN”); and 
• whether they mayneed special educational provision to be made through an EHC plan. 

If the answer to both of these questions is yes, they must carry out an EHC needs assessment.

This test is set out in the law (section 36(8) of the Children and Families Act 2014). This means these are the only questions the LA should be asking when considering whether or not to carry out an EHC needs assessment.

The SEN and Disability Code of Practice, which is statutory guidance issued by the government, contains further detail on what LAs should consider. At paragraph 9.14 the Code states that “the local authority should consider whether there is evidence that despite the early years provider, school or post-16 institution having taken relevant and purposeful action to identify, assess and meet the special educational needs of the child or young person, the child or young person has not made expected progress”. The LA should pay particular attention to: 

• evidence of the child or young person’s academic attainment (or developmental milestones in younger children) and rate of progress;
• information about the nature, extent and context of the child or young person’s SEN;
• evidence of the action already taken by the school or other setting;
• evidence that where progress has been made, it has only been as the result of much additional intervention and support over and above that which is usually provided;
• evidence of the child or young person’s physical, emotional and social development and health needs, drawing on relevant evidence from clinicians and other health professionals and what has been done to meet these by other agencies.

Please note that the Independent Provider of Special Education Advice (known as IPSEA) offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND). IPSEA also provides training on the SEND legal framework to parents and carers, professionals and other organisations. 

Reference: IPSEA

You can use this letter to request an EHC needs assessment. There is more information on when you might want to make this request, and how to make it, here.

Remember to keep a copy of any letter you send. If you need further advice, you can book an advice line appointment with IPSEA. 

You should write to the most senior person at the LA, usually called the Director of Children’s Services. You can find information and contact details for this person by clicking here.

The LA should respond within 6 weeks of receiving your request. 

Remember to keep a copy of any letter or email you send. If you don’t get a reply within 6 weeks, or if you need further advice, you can book an appointment to speak with IPSEA.

If a child or young person has a learning difficulty or a disability which is holding them back at school or college, and the parents of the child or the young person (or the young person themselves) believe that the school or college is not able to provide the help and support which is needed, then a request should be made to the Local Authority (“LA”) for an EHC needs assessment.

You can do this at any time.

You can only ask for an EHC needs assessment if the child or young person has, or may have, SEN – it does not apply where there are only health or social care needs. Remember that under the law, a child has SEN if they have a learning difficulty or a disability which calls for special educational provision. You can read more about the definition of SEN here.

For children under 16, the parent makes the request. This includes children from age 0 to 5, where parents should make a request if they believe that the child will need extra help at nursery or when they start school.

In the case of a young person (over 16 and up to 25), they can make the request themselves. If the young person is not able to understand, remember or communicate decisions about the educational support they need, their parent or carer can make the request on a young person’s behalf. There is more information about how the law applies to young people here. 

The EHC planning and assessment process should take no more than 20 weeks from the date of the request until the plan is issued, unless certain conditions occur. There are a number of stages in the process.

The exceptions to the time limits which extend the 20-week timescale are:

• appointments with people from whom the local authority requested information are missed by the child or young person. 
• the child or young person is absent from the area for a period of at least four weeks. 
• exceptional personal circumstances affect the child or young person or their parent/carer. 
• the education setting is closed for at least four weeks which may delay the submission of information from the school or other institution. 

Your Local Authority must seek information and advice on a child or young person’s needs, the provision required to meet those needs and the outcomes expected to be achieved by the child or young person. This advice must come from a range of different people. A parent or young person can ask the Local Authority to seek advice from anyone within education, health or social care, as long as it is a reasonable request. If a parent or young person already has their own advice and reports, these can be submitted as part of their own advice. Anyone who is asked for information and advice should respond within 6 weeks, unless there are exceptional circumstances.

In addition to their duty to seek evidence, the Local Authority must consult with the parent or young person and take into account their views, wishes and feelings; engage the child and the child’s parents or the young person to ensure that they are able to participate in decisions, and minimise disruption for the child, the child’s parents, the young person and their family.

The Local Authority must consider all advice when making its decision.

If your local authority makes a decision that you do not agree with, you have the right to appeal. Please see the Commonly Asked Question about how you can appeal a decision on your EHCP.

Please note that the Independent Provider of Special Education Advice (known as IPSEA) offers free and independent legally based information, advice and cupport to help get the righ education for children and young people with all kinds of special educational needs and disabilities (SEND). IPSEA has created a timeline for EHC needs assessment to an EHC plan, which you can access here: Download (ipsea.org.uk)

For further information, please see section 9 on Advice and Information for EHC needs assessments in the SEND Code of Practice: 0 – 25 years.

An EHCP can last until you are 25 years old if you need it to last that long. Those with EHCPs will be offered personal budgets to buy services. EHCPs are only for schools and colleges – not university.

When local authorities (“LAs”) make certain decisions about the education and/or training of a child or young person with SEN, there is a right of appeal to the First-tier Tribunal (Special Educational Needs and Disability) (the “SEND Tribunal”).

To be able to appeal, you must be a parent or a young person over the age of 16. In education law ‘parent’ means you are either a birth parent, have acquired parental responsibility or have care of the child (e.g. a foster parent or grandparent with whom the child lives).

If the decision concerns a child, it is the parent who has the right of appeal. If the decision concerns a young person, then it is the young person who has the right of appeal. (See the section on young people and their rights for more information.) 

You can bring an appeal to the SEND Tribunal if an LA: 

• refuses to carry out an EHC needs assessment or a re-assessment; 
• refuses to issue an EHC Plan;
• issues or amends an EHC Plan but you disagree with any or all of Section B (special educational needs), Section F (special educational provision) or Section I (placement);
• decides not to amend an EHC Plan after an annual review;
• decides to cease to maintain the EHC Plan at any point.

Parents and young people also have the right to appeal against the health and social care sections of the plan (Sections C, D, G and H). For more information, see the section about contents appeals.

Before bringing an appeal to the SEND Tribunal, you must consider mediation. This does not mean that mediation is compulsory, but it must be considered. The exception is if you are appealing only about the school or college placement, or where no school or college is named and you are appealing about that fact.

For more information about the process of bringing an appeal about an EHC needs assessment or EHC plan, see our general advice for all appeals. Alternatively, see the separate section about disability discrimination for more information on how to bring a discrimination appeal to the SEND Tribunal.

Under the Children and Families Act 2014 in England, local authorities and their statutory partners which include Clinical Commissioning Groups (which are due to transition to Integrated Care Boards in July 2022) have strategic commissioning and review duties which are to ensure that the needs of children and young people with SEND are well met through proper, jointly commissioned education, health and social care provision.   Any child with a special educational need and disability should have their needs met from within the educational setting they attend via SEN support or via an EHCP, based on their individual needs via expert assessment.  The EHCP should be reviewed regularly by education, health and care professionals.    Under the SEND Regulation 18, specific statutory deadlines are set for when a child or young person’s EHCP must be reviewed, and if amendments are needed (because of a move of placement or because needs and provision have changed), then amended.   The review process for transition should start no later than year 9 (e.g. when the young person is aged 13 – 14), and the deadlines for the review to be concluded and the plan to be amended are as follows:

• School to post-16 education – 31 March
• Post-16 to post-16 – 5 months before the transfer date
• Any other transfer – 15 February

For more information:

• The Special Educational Needs and Disability Regulations 2014 (legislation.gov.uk)
• Transfer to a new phase of education | (IPSEA) Independent Provider of Special Education Advice

For schools:

• https://pdnet.org.uk/transitions/

It is possible to get a personal budget and/or a direct payment for educational provision for a child or young person who has an EHC plan. For more information, see IPSEA page on personal budgets and direct payments.

The following websites can provide information and advice for parents of children with disabilities such as cerebral palsy. 

Toys and equipment 

Your therapists will be able to advise you on what type of toys and equipment would be appropriate for your baby/child. 

The following websites have useful information about toys and equipment. 

• Toys for Children with Cerebral Palsy That Improve Mobility (flintrehab.com)
• Sensory Direct | Weighted Blankets, Sensory Toys & Equipment
• Special Needs Equipment | Paediatric Equipment by Smirthwaite
• Toys for Children with Special Needs – Special Needs Toys (fatbraintoys.com)
• Sensory toys,Sensory toys and special needs sensory toys,Autism toys,special needs toys,cheap sensory toys,special needs toys,sensory warehouse,tfh toys,sensory toys,fiber optics,sensory lights,special needs toys and resources,sensory toys,sensory autism toys,sensory toys (cheapdisabilityaids.co.uk)
• Inclusive Technology – All the Help You Need
• LDA – SEN, special educational needs supplies & resources | LDA Resources (ldalearning.com)
• Home – Sensory Guru Ltd
• Toys for Children with Special Needs – Special Needs Toys (fatbraintoys.com)
• TTS | School Supplies for Primary, Secondary & Early Years (tts-group.co.uk)
• The UK’s Leading Sensory Company | Snoezelen® Multi-Sensory Environments and Sensory Equipment | Rompa

General information:
Council for Disabled Children
Scope UK
Caudwell Children

Financial support:

For information about the funding available to parents of children and those living with disabilities, please see here:

• Help if you have a disabled child: Overview – GOV.UK (www.gov.uk)
• Money (councilfordisabledchildren.org.uk)
• Working Families | Benefits for parents and carers of disabled children Archives – Working Families

For more specific information about the financial and childcare support available to parents of disabled children in Northern Ireland, please see here:

• Financial support | indirect
• Children with a Disability – Childcare/Financial Support – Family Support Information (familysupportni.gov.uk)

In addition, there are also a number of trusts and foundations who provide funding or part-funding for equipment, aids, adaptations, travel costs and access to activities.  The list below is not exhaustive:

• Disability Grants – Charitable Funding for the Disabled (disability-grants.org)
• Grants | Cash for Kids | Helping the children that need it most
• Caudwell Children | Children’s Charity | Changing Children’s Lives
• Family Fund
• Charitable grants for ill or disabled people | MoneyHelper
• Disability discounts | Disability charity Scope UK
• Grants for families | WellChild
• Application Process | Applying for a Wheelchair | Whizz-Kidz
• The Piers Harrington Foundation: contact@piersharringtonfoundation.co.uk

Health:
Council for Disabled Children
Caudwell Children
NHS | How to care for children with complex needs
Mental Health Foundation | Booklet
WellChild

Childcare:
Family and Childcare Trust

Education:
IPSEA
Children with special educational needs | GOV.UK
Sense | Support for children
Contact | Introduction to special educational needs
Special Needs UK | Schools for children with cerebral palsy

If you have any concerns about the medical care that you or your child received during pregnancy, labour or after birth, in the first instance you should speak directly with your medical team, ie, midwife on call, obstetrician and/or neonatologist, maternity unit patient liaison team or your GP or health visitor to clarify any questions and discuss your concerns.

If you still have concerns, you may wish to seek independent legal advice. There are numerous law firms who specialise in this area (clinical negligence) and you should speak to more than one firm before deciding which is the best one for you. They should provide you with a free initial consultation from a specially trained legal specialist.

You should always ensure that any solicitor or law firm you speak to is regulated by The Law Society or Solicitors Regulation Authority.

The information that follows has been provided by Enable Law.  

If a child has cerebral palsy and their medical treatment before, during or after birth may be to blame for their condition, there could be a valid claim.

Common valid reasons for a claim include mistakes during pregnancy or labour that led to a child’s brain injury – such as where the baby suffered reduced blood or oxygen supply (temporary asphyxiation) as a result of failures.

This may include failures to:

• deliver a baby early enough via caesarean
• monitor the baby’s heartbeat
• respond appropriately to the umbilical cord being caught around the baby’s neck
• follow medical guidelines to ensure the safety of a child
• fully inform parents about risks such as those involved in choosing to give birth away from a hospital.

If you are unsure whether the harm to your child was avoidable or not, the law firm should be able to help.

In most circumstances it will cost you nothing to investigate a claim. The law firm will provide free initial advice about whether there is likely to be merit investigating a claim and how it can be funded.

Enable Law | Cerebral Palsy Claims

This information note explains various ways a claim can be funded: Enable Law | How much will it cost me to bring a claim?

Whilst your child is under 18, in normal circumstances, you as a parent can make decisions including managing any health and financial arrangements on their behalf. However, you may be worried about what would happen to your child’s health or financial welfare if you should die or be unable to make decisions on their behalf, or if you believe that your child would not be able to manage their health needs or finances once they have reached the age of 18. You can get advice about the financial and welfare decisions that you may have to make for your child from solicitors who specialise in mental capacity.

Please ensure that you always speak with more than one source of information and that that source of information is approved by a governing body.

The Solicitors Regulation Authority regulates solicitors in England and Wales. A solicitor will be able to help you with information about:

• Trusteeships
• Deputyships
• Powers of Attorney
• Living Wills
• Deprivation of liberty issues
• Property and financial issues
• Health-related decisions
• Managing Benefits

Scope also provides information about benefits and financial support available for families with disabled children: Scope UK | Benefits and money as well as information on legal advice available: Scope UK | Legal advice

There are a number of support groups for parents and carers that offer practical and emotional advice.   To find out what is available in your area, you can ask your Health Visitor and also search your Local Offer.  In addition, please see the following for information about local and online support groups. 

• Support groups for parents | Disability charity Scope UK
• Children, parents, and families — Scope | Disability forum
• Local support groups | Contact
• Find/ Join Your Local Forum – National Network of Parent Carer Forums C.I.C (nnpcf.org.uk)
• We’re here to make life better for carers – Carers UK

The charity, Scope, also offers a national mentoring service called Navigate that provides online emotional support for parents and carers of disabled children who are finding out about their child’s additional needs.  Navigate is open to any parent or carer living in England or Wales of a child under the age of 18 who is on a pathway to diagnosis or has received a diagnosis in the last year.  There is a waiting list for speaking to an advisor.  For more about Navigate, click here:  Navigate: emotional support for parents | Disability charity Scope UK.

Scope also offers a free 6-week programme supporting parents and carers with young disabled children to improve their well-being.  This programme is called Parents Connect, and there is more information about this here:  Parents Connect | Disability charity Scope UK

Under the Children and Families Act 2014 in England, local authorities and their statutory partners which include Clinical Commissioning Groups (which are due to transition to Integrated Care Boards in July 2022) have strategic commissioning and review duties which are to ensure that the needs of children and young people with SEND are well met through proper, jointly commissioned education, health and social care provision.   Any child with a special educational need and disability should have their needs met from within the educational setting they attend via SEN support or via an EHCP, based on their individual needs via expert assessment.  For children receiving SEN support, the SEND Code of Practice has clear guidance as to what should happen in terms of planning for adulthood, and these children are also covered under the Children and Families Act 2014 up to the age of 25 years.  If a child has an EHCP, there will be specific statutory reviews that take place at phased transfers (e.g. from secondary to post 16, or from post-16 onwards), and from Year 9, those reviews must include a focus on the transition to adulthood. 

There exists specific legislation and guidelines dealing with the transition to adulthood and adult services, including:

• SEND Code of Practice, chapter 8, Preparing for adulthood from the earliest years that details the planning and considerations that local authorities and their statutory partners should undertake for children and young people with SEND.
• NICE guidelines – Overview | Transition from children’s to adults’ services for young people using health or social care services | Guidance | NICE
• Care Act 2014 – has specific provisions to facilitate the early assessment of possible care needs for a child who is approaching the age of 18 through the Child’s Needs Assessment – Local authorities can start as soon as it would be of benefit to do so.  This can then be treated as an adult social care assessment once the child becomes an adult for the purposes of planning and implementation of adult social care provision.  Under Section 66 of the Care Act, this allows for local authority Adult Services to continue to provide the social care package that they provide under children’s social care legislation even after that child becomes an adult at the age of 18 years for as long as it takes the adult social care package to be put into place.     

In England, schools have a duty to provide access to independent and impartial careers advice to pupils from Year 8 to Year 13.  Schools must give you an outside perspective, for example, through providing an external careers adviser, organising college and employer visits or using websites and helplines.  Colleges can also provide careers advice and guidance.  Under the Children and Families Act 2014 in England, local authorities should support all young people with SEND to prepare for adulthood.  Discussions should focus on what you want to achieve and the best way to support you.  For young people with an EHCP, local authorities must ensure that the review at Year 9 and every review afterwards includes a discussion about your future.  This should cover your education and employment plans, housing needs, social and health care. 

For more information:

• Get support | (IPSEA) Independent Provider of Special Education Advice
• What does SEN Support in post-16 education mean? | (IPSEA) Independent Provider of Special Education Advice
• Transfer to a new phase of education | (IPSEA) Independent Provider of Special Education Advice

There are a number of charities and services supporting disabled adults to access and stay in employment.  Make certain that you understand your rights.  The Equality Act 2010 means that it is unlawful for an employer to discriminate against disabled people, and employers are also required to make ‘reasonable adjustments’ to prevent disabled people from being placed at a disadvantage, and if the employer cannot afford a reasonable adjustment, the employee with a disability might be able to apply for funding through the government’s Access to Work scheme.  The National Disability Strategy from 2021 has a number of commitments to removing the barriers for disabled people entering employment.  One of these is the Access to Work Adjustments Passport that are designed to help disabled young people to have conversations about their disability and adjustments that they already receive, and provide information about their condition and the support that they might need at work to potential employers. This new passport is being piloted in a number of colleges and universities, and is part of the Access to Work funding (grants worth up to £62,900 for practical support and communications support at work, and advice on mental health).  In other words, this passport can be used when a student applies for Access to Work funding as it will hopefully alleviate the need for another needs assessment. 

The government has launched a scheme to encourage businesses to create accessible and inclusive workplaces.  All UK-registered businesses are eligible to join, and so far, almost 20,000 businesses are part of the Disability Confidence Scheme.  To find employers that have signed up to the Disability Confident Scheme, please click here: Employers that have signed up to the Disability Confident scheme – GOV.UK (www.gov.uk)

For more information:

• Job support if you have special educational needs or a disability | National Careers Service
• Employment support services | Disability charity Scope UK
• Careers and work for disabled people | Disability Rights UK
• Home – EmployAbility (employ-ability.org.uk)
• Support for Young People with Learning Disabilities in the UK – Youth Employment UK
• Employers – UP (upmovement.org.uk)