Family Fund Family Poll: March 2023 – EHCP supplemental questions

Background

Family Fund is the largest UK charity providing grants to low income families raising disabled or seriously ill children or young people.

All of our work is guided by the voice of the families we work with, and in order to ensure that we are accurately reflecting the realities of life for the families we work with, we run a Family Poll. Every quarter we invite a selection of families who have received a grant from Family Fund on average 9 months previously to take part in Family Poll, which is a survey covering their financial circumstances, additional costs of raising a disabled or seriously ill child or young person, their access to care, things they have to go without, their own and their child or young person’s wellbeing.

In addition to the core questions we also ask varying additional questions in each Poll. At the request of the Department for Education in the March 2023 Poll we included questions about families’ experiences of being Education, Health and Care Plans for their disabled child or young person.

We included these questions only for families living in England. This document reports what families told us about their Education Health and Care Plans (EHCPs).

About the respondents

In England 778 families completed Family Poll in March 2023.

• 95% of parents/carers who completed the survey were female.
• 78% of parents/carers where White British; 5% Asian/Asian British; 6% Black/Black British; 5% White Other; 2.5% Mixed ethnicity
• 35% of parents/carers had themselves a long physical or mental health difficulty expected to last 12 months or more which reduced their ability to carry out day to day activities
• 44% of parents/carers were the only adult in the household
• 40% of families have more than one disabled or seriously ill child or young person in the household

In 655 families, 84% of the total, at least one child  or young person had and EHCP. Some families had multiple EHCPs relating to multiple children but we asked parents/carers to think about the newest EHCP in the family.

Please note that we do not collect information about the Local Authority the family live in in Family Poll so it is not possible to further analyse the findings by Local Authority.

Findings

In 84% of cases the EHCP had been finalised, in 14% of cases it was being written, and 2% of families were currently appealing the EHCP.

Question: How long ago was your child’s EHCP written (n= 552)

• In the last six months = 172 (31%)
• Between six months and one year ago = 78 (14%)
• Between one and two years ago = 75 (14%)
• Between two and four years ago = 77 (14%)
• More than four years ago= 133 (24%)
• I don’t know= 17 (3%)

For many of the families their EHCP was relatively new, however we asked parents/carers to focus on their most recent experience of getting an EHCP for their child or young person. This means that for the large group of families with multiple children or young people with a disability or serious illness this may not have been their first experience of the EHCP process.

Question: I found it east to name a placement for my child in the EHCP (n=655)

• Strongly agree = 136 (21%)
• Agree = 144 (22%)
• Neither agree nor disagree = 194 (30%)
• Disagree = 95 (15%)
• Strongly disagree = 86 (13%)

Parents/carers were fairly evenly split about how easy they found it to name a placement, with marginally more saying they found it easy than those who did not find it easy. There is evidence of a high degree of individual variation in how straightforward naming a placement was.

Question: My local authority told me where I could find relevant information to help me make a decision about my child’s placement (n = 655)

• Strongly agree = 84        (13%)
• Agree = 140 (21%)
• Neither agree nor disagree      = 187 (29%)
• Disagree = 140 (21%)
• Strongly disagree = 104 (16%)

The responses to this question indicate once again that there was a high degree of individual variation in how much useful information parents/carers felt that they got from their local authority. Overall parents/carers were slightly more likely to feel that they hadn’t been told where to find relevant information than that they had.

Question: I got information to help me make my decision about my child’s placement from. Select all that apply. (n = 655)

• SENDIASS = 150 (23%)
• Local Offer = 59 (9%)
• Family and friends = 139 (21%)
• Schools or other education settings (e.g. teachers, SENCOs, nursery keyworker) = 354 (54%)
• Other education professionals (e.g. educational psychologist) = 102 (16%)
• Voluntary or community sector organisations = 22 (3%)
• Websites or online forums = 76 (12%)
• Social media       = 43 (7%)
• Local authority EHCP case workers = 99 (15%)
• Other local authority professionals e.g. portage, social workers = 33 (5%)
• None of the above = 96 (15%)

The most common source of information for parents/carers about making placement decisions were schools. Specialist SEN services (SENDIASS, EHCP case workers) being the next most widely referenced group, but far less common. Less formal sources of information such as friends and family were also cited by a number of parents/carers. Although 15% of parents/carers did not get information from any of the above.

Question: I would like/would have liked the local authority to make a recommendation of suitable placements for my child (n= 655)

• Strongly agree = 154 (24%)
• Agree = 188 (29%)
• Neither agree nor disagree = 238 (36%)
• Disagree = 45 (7%)
• Strongly disagree = 30 (5%)

Parents/carers were in favour of the local authority, with 53% of parents/carers either strongly agreeing or agreeing that they would have liked the Local Authority to have made a recommendation of suitable placements for their child.

Question: If the local authority did make a recommendation of suitable placements to consider, what information would you like to see included with it. Select all that apply. (n=655)

• Specialist support available at that placement = 456 (70%)
• Link to school website = 295 (45%)
• Link to school SEND policy = 326 (50%)
• Ofsted rating or inspection report = 314 (48%)
• Outcomes (e.g. grades) and pathways (e.g. went to college/university) for similar children at that placement          = 238 (36%)
• Workforce information (e.g. SENCO, TAs) = 199 (30%)
• Physical environment = 273  (42%)
• Size of school (e.g. number of pupils per year) = 345 (53%)
• Distance from your home = 343 (52%)
• Transport options = 364 (56%)
• Extra-curricular activities = 225 (34%)
• None of the above = 101 (15%)

Parents/carers wanted a wide range of information included in any recommendation of placements to consider. Around 15% of parents/carers did not think that any of the suggested information would be necessary, and although this group was more likely to have disagreed with their local authority making recommendations of placements to consider, they where by no means the same group.

Question: I asked for a specific placement to be named in the final EHCP (n =655)

• Yes  = 369 (56%)
• No= 148 (23%)
• I don’t know = 138 (21%)

Most parents/carers reported asking for a specific placement.

Question: I asked my local authority to talk to more than one potential placement I was interested in (n = 655)

• Yes  = 183 (28%)
• No = 314 (48%)
• I don’t know  = 158 (24%)

Having multiple placements that they were interested in was relatively uncommon.

Question: I understood the legal tests the local authority applied to my placement request (n = 369)

• Yes  = 201 (54%)
• No  = 111 (30%)
• I don’t know  = 57 (15%)

Of the parents/carers who reported asking for a specific placement, most felt that they understood the legal tests applied.

Question: The placement named in the final EHCP was one of the settings I requested. (n =369)

• Yes  = 300 (81%)
• No = 48 (13%)
• I don’t know = 21 (6%)

Over 80% of parents/carers who requested a specific placement in their child’s EHCP reported that this placement was the one that was named in the EHCP.

Question: Is your child attending the placement named for them on their EHCP? (n=655)

• Yes  = 457 (70%)
• No= 119 (18%)
• I don’t know = 79 (12%)

70% of children were attending their named placement. The ‘I don’t know’ response was more commonly selected by parents/carers who reported that their child’s EHCP was still being written, but these parents/carers only made up about half of the group who reported that they didn’t know if the child was attending the setting named in their EHCP. This suggests that there is a minority of parents/carers (approximately 5%) who don’t know what setting was named in their child’s EHCP.

Question: What type of placement is your child attending? (n = 535)

• State funded nursery = 14 (3%)
• Private nursery  = 11 (2%)
• Mainstream school = 186 (35%)
• State funded special school l= 187 (35%)
• Independent special school = 55 (10%)
• Further education or sixth form college = 10 (2%)
• State funded special college = 5 (1%)
• Independent college = 5 (1%)
• Alternative Provision      = 7 (1%)
• Educated somewhere other than a school = 6 (1%)
• Educated at home = 5 (1%)
• I don’t know = 13 (2%)

Most children are attending either a mainstream school, state special school or an independent special school.

Question: I am satisfied that the placement is able to meet my child’s needs. (n = 535)

• Very satisfied = 204 (38%)
• Satisfied = 145 (27%)
• Neutral = 120 (22%)
• Dissatisfied = 40 (7%)
• Very dissatisfied = 26 (5%)

Parents/carers were by and large satisfied that their child’s placement was meeting their child’s needs. The least satisfied group however were parents/carers whose children were at a mainstream school, with nearly 20% of this group being dissatisfied or very dissatisfied with the placement’s ability to meet their child’s needs compared with 5% of parents/carers with children in special schools and 10% of parents/carers with children in independent special schools.

Question: I feel that some families are better able to navigate the system, understand how the system works and get their preferred placement. (n=655)

• Strongly agree = 210 (32%)
• Agree = 212 (32%)
• Neither agree nor disagree = 193 (29%)
• Disagree = 28 (4%)
• Strongly disagree = 12 (2%)

Parents/carers did not feel that all families had the same ability to understand how the system works and get their preferred placement. Two thirds of parents/carers either strongly agreed or agreed that some families are better able to understand how the system works and get their preferred placement.

To understand more about why parents/carers felt that some families are better able to navigate the system we asked the 422 parents/carers who strongly agreed or agreed:

What do you think makes some families better able to navigate the system, understand how the system works and get their preferred placement?

150 parents/carers responded to this question.

Key themes were:

Parental confidence and mental health

“They aren’t shy about asking or don’t have social anxiety to be able to put them selves out there and ask the questions and have more help from friends/family and professionals”

“They are more confident to ask questions and challenge the system. They are better supported by school staff. They know and understand their rights.”

“The louder people shout and the more phone calls and emails that are sent, those people get more than the nicer quieter people”

“People have more confidence to appeal and wait for the schools that they preferred, but I just accepted the place as I didn’t want my son to be without a specialist place as he cannot cope in mainstream school”

“Little consideration is given to parents who are disabled themselves, especially with regards to parents who are struggling with anxiety or cognitive and neurological issues meaning they are unable to be assertive for their child’s needs”

“I’m not very familiar with the system and not very good with confrontation so very often spoken over or not listen to in meetings”

“Having more support and understanding. I myself have ADHD and find it different to concentrate and retain information”

Parental education/knowledge

“Some parents are more academically able to understand law and processes. Some lack the capability meaning children are missing out or not getting what they need which infuriates me! EVERY child should be having their best interests fought for by the EHCP team. It’s their job to make sure these children have the correct provision. Instead they want to cut corners and finances. Sadly it’s never about the child’s needs!”

“Some have more professional knowledge/experience.
Others take advice from families that have already gone through the process. Either way, the process itself was never explained fully to me.”

“Some are just better at navigating the system then others, some might not have a computer/laptop, some find it hard to ask for help.”

“Postcode lottery. Put simply some patents are better educated. Depends on info given from schools. Some schools give no support others loads. Depends on persons stress levels”.

“no one tells you where to get information or ACCESS HELP NEEDED”

“My mother was an ex SENCO and head of special needs. We both have degrees.
I was horrified that the system was totally biased towards those who had the intellect and knowledge. We were determined and articulate. Many are speaking English as a second language or do not have a higher education qualification. I feel strongly that many are disadvantaged by the information required and the complexities of the system.”

“I’m a teacher myself. Therefore I felt I has a much better understanding of the process including the terminology and legal implications. I also had an amazing social worker”

“If they have a better understanding how the system works. I work in a special needs school so have a greater understanding”

“I think as a first time getting an EHCP I didn’t understand a lot of it and still don’t, I just had to look into each part as I came to it I couldn’t learn it all”

“Education, I researched every detail of what I needed for my son (i have a master degree and found it extremely hard) but also had the time to do this where as some parents work full time. I also had the confidence to fight for what was right (legally entitled too) even when la disagreed or where no legally correct. I fought so hard to get the best education and personal budget for my son, it was so complicated and like hitting a brick wall. I even put my son in school on la request but school couldn’t meet needs and son was very unhappy but school where amazing and helped get an ehcp and personal budget.”

Parental financial resources

“I think some families have the money to pay for professionals to fight their corner and it becomes a challenge for families waiting on nhs diagnosis or relying on voluntary organisations. Money seems to pay the way for most things. It sets the bar between rich and poor.”

“I spent hundreds of hours, that many parents don’t have, I also had solicitors and private reports as LA continually broke the law, most can’t afford that, I borrowed £12,000 to get a placement. Our friend who can’t do this has a child awarded an ehcp four years ago with still no placement”

“Families from middle-class white British backgrounds more likely to get what they want, due to unconscious bias in the system.
If you are educated and have money you are more likely to get adequate support for your child.
The system is too complicated and too expensive for the majority of parents to be able to successfully navigate”

“Educated, middle class who can afford legal representation to support tribunal”

Parental social networks

“Time. When they have a partner they have more time and energy to research. Also as I have asd I don’t have the social networks others do so miss out on tips and advice”

“Taking advice from other families, starting the process early, making contacts and being able to communicate calmly with professionals to ask how the process works. (There should be more relationship building with families).”

“stronger, more able to fight / argue, have support in place to help them emotionally”                                                                                                    

“I had to apply for an ECHP for my child myself. when I told the school I had applied ,then they helped me. only by going to parent groups of SEN children did I find out that I could apply myself and get the ball rolling. if parents are unable to fight for their children, some children would get left behind”

Support for families from schools and local authorities

“The process for my son who attends a special needs school was / is very easy.
My younger son who attends mainstream school currently applying for ehcp and the process has been long and hard”

“The level of support from senco, school. Social and economic background”

“Some feel bullied by authority. Unable to voice their wishes.”

“More explanation of the the EHCP process is required – how it works and what it means”

“It’s very confusing and you need patience and knowledge. You definitely need to seek professionals guidance for the process of obtaining an EHCP”

“If the families have been appointed a family support worker, portage worker, social worker or directed to a local voluntary support and advice group, they will gain more information about what is available in the area and what settings are going to be most appropriate for their child.”

“Having one main lead worker to focus choices and sign post families to relevant information”

“Experience either personally or from friends and family, supportive social worker or SENCO from school/ nursery with knowledge of the system.”

Previous experience of EHCP process

“Some families are more experienced if have more than 1 child with special needs”

“Practice if they had previously done for another child or people who are very proactive and fight for their kids otherwise you just get forgotten it’s really hard work and time consuming and overwhelming though so it runs your life does mine I’ve no time to care for myself ever”

“Everyone is different I have spoke about my first daughter but my second daughter has been refused due to school going against me  I think some people who have gone through it so many times know how to work it but it is hard  I am still battling” 

Language barriers

“Not everyone is able to speak and understand English, nor access information on the internet. However, everyone is expected to obtain these information in the same manner without help or advise from anyone at the Local authority. This discriminatory as I am struggling very hard to very and help for my son. ps. (This is been completed through a friend)”

Parents having to balance the demands of applying for an EHCP with their other caring responsibilities

“Not being totally exhausted, more resources and support”

“If as a family your not very good with computers, websites or video chat your immediately put at a disadvantage because calling on the phone to seek advice is almost impossible and when you do get to speak to someone all they want to do is direct you to a website. So frustrating”

“I think not everyone can read and understand pages of letters and with more than one disabled young adult in my house and they all have different needs can be so overwhelming Support is rubbish no one is bothered it’s left to us Parents”

Ability to access legal advice

“The system is very complicated and it takes time and persistence to understand it. Challenging an EHCP also requires private funds especially if legal advice and private experts are needed.”

“Legal aid specialist solicitors having taken the LA to court twice re two disabled children”

“learning the SEN law before accepting the local authorities decision. My daughter starts sen school in September and at first we were declined, was told to appeal and did but researched a lot beforehand and ending up getting a place without going to tribunal because I was knowledgeable and realised they weren’t following send law guidelines”

“It’s certainly has to do with understanding what are the responsibilities of the local authority, and whether the Local Authority are acting in accordingly with the existing policy that is legally binding set out by Law for young people and children with SEND needs or may have SEND needs. Often times , some family’s may quote the Law to the Local Authority and they will respond accordingly,  meanwhile other family’s cannot do the same for various reasons and that’s where the disadvantages happened.”

“I have found that people with money to get solicitors are much more likely to get the placement they need for their child.”

Question: The process for naming a placement sets up a confrontation between families and local authorities. (n= 655)

• Strongly agree = 137 (21%)
• Agree = 208 (32%)
• Neither agree nor disagree = 279 (43%)
• Disagree = 27 (4%)
• Strongly disagree = 4 (1%)

Fewer than 5% of parents/carers disagreed or strongly disagreed with this statement, indicating that very few parents/carers felt that there had been no possibility for conflict between families and local authorities when determining a child’s placement.

Question: I have appealed/would be likely to appeal a placement decision that I considered unsuitable for my child (n=655)

• Strongly agree = 189 (29%)
• Agree = 105 (16%)
• Neither agree nor disagree = 234 (36%)
• Disagree = 66 (10%)
• Strongly disagree = 61 (9%)

It’s unclear why 20% of parents/carers would not appeal a placement decision that they considered unsuitable for their child. This could be because they felt the process worked well for them and their child and they don’t see any circumstances where their child was placed in a placement that they didn’t consider suitable. Alternatively it could be because they are so disaffected by the whole process that they don’t see that appealing will make any difference to their child’s placement. It isn’t possible to understand why a relatively large group wouldn’t appeal a placement they considered unsuitable from the existing data; but is an unexpected finding.  

Further resources

Available alongside this summary report are:

• Data tables
• Full qualitative analysis

For further information or to discuss further, contact Dr Abby Dunn, [email protected] Head of Policy, Research and Evaluation at Family Fund, or alternatively [email protected]