Family Fund Family Poll: June 2023 – EHCP supplemental questions
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 June 2023 Poll we included questions about families’ experiences of their disabled child or young person having an Education, Health and Care Plan, particularly in relation to mediation. This consisted of 12 closed questions and an open question. Whilst the open question was about accessing guidance the nature of an open question meant that families talked about wider aspects of the process of getting an EHCP and these comments are used to illustrate the findings as appropriate throughout this report.
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 1,100 families completed Family Poll in June 2023.
- 93% of parents/carers who completed the survey were female.
- 78% of parents/carers where White British; 6% Asian/Asian British; 6% Black/Black British; 5.7% White Other; 2% Mixed ethnicity
- 40% 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.
- 40% of parents/carers were the only adult in the household.
- 36% of families have more than one disabled or seriously ill child or young person in the household.
The majority of parent/carers were experiencing at least one of being themselves disabled; the only adult in the household or had more than one disabled child. Feedback from families highlights the high level of cognitive, emotional and physical load on families experiencing multiple challenges and the findings should be read within this context.
For the majority of the 1077 parents/carers who answered this question reported that their disabled children or young people has an EHCP (74%). Some family’s disabled children or young people are in the process of being assessed for an EHCP (13%), whilst 11% of families surveyed say their child does not have an EHCP and is not being assessed for one.
“I’m forever up against the system and they seem to make it ridiculously difficult to apply for anything like that. Got a EHCP automatically with my first daughter’s diagnosis. However, my son is not anything just been diagnosed with ADHD and [we’re in] the process of getting an EHCP. My youngest daughter is pending a diagnosis and it doesn’t or tally up at the same time anymore. You have to apply for one thing that you have to apply for the other thing and then these are the same things apply to the [….]. They do this on purpose so people don’t bother.”
The 799 responses to this question indicate there was a high degree of individual variation regarding how helpful parents/carers found their Local Authority and if they knew what their duties were. 39% of parents/carers agreed or strongly agreed that their local authority felt their local authority was helpful and knew what their duties were, 35% of parents/carers disagreed or strongly disagreed and 25% of parents/carers neither agreed nor disagreed.
Overall, parents/carers were marginally more likely to feel that their Local Authority were more helpful and knew their duties than those who felt otherwise.
“I am currently on my 3rd, 4th and 5th tribunals. They’re all within 23 days of each other starting on September 7th. My LA is a joke and do not adhere to the legislation in place. Their commissioned NHS therapists all make recommendations on the basis of their services availability, not the child’s needs.”
Of the 799 responses 31% of families have attended mediation in relation to their child or young person’s EHCP. 60% have not, and 9% of families do not know if they have attended mediation in relation to an EHCP.
“We are not a pushy family and tend to get spoken to and told what we need rather than being listened to. This after 17 years we are trying to change its difficult when you are just worn down by it all.”
Exactly half of the 246 parents/carers who answered this question agreed that they found the mediation process easy to understand and navigate. 31% neither agreed nor disagreed with the statement, while 18% did not find the mediation process easy to understand and navigate.
“Many parents with Sen children have difficulties themselves. The paperwork and online hubs are very confusing and overwhelming for me personally.I can’t work on computers very well , yet everything is online now.”
“Don’t really understand im Diagnosed with autism myself”.
Around 60% of the 246 parents/carers reported that they accessed guidance while taking part in mediation in relation to an EHCP, while nearly 24% took part in mediation without access to any guidance. 17% of parent/carers didn’t know if they had accessed mediation guidance.
“Don’t like seeing people in person and discussing my needs, feel a failure to even have to contact anyone or anything”.
145 parents and carers answered the question on the ease of finding mediation guidance on EHCPs. 79% parents/carers said it was easy to find/access guidance on mediation in relation to an EHCP, whereas just 14% of parents/carers said the guidance was not easy to find/access.
“It’s easier to access information via the Internet and to contact them via the telephones about it.”
“I can save links and Web pages of info on the Internet. I can make notes if I ring someone and then I can re-read the info when I have time”.
90% of the 145 parents/carers found the guidance to be helpful for the process, with just 9% saying they found the guidance unhelpful.
“The government is a legal statue so you know what your reading is factual. I like simple bullet pointed type reading material.”
“Government websites I always find more thorough and straight to the point help links and phone numbers”.
The 145 parents/carers told us they access guidance from a variety of sources, the most common of which were schools and Special Educational Needs and Disabilities Information Advice and Support Services (SENDIASS), with these options accounting for 34% each. They were followed by Local Authorities at 12% as the next most referenced way to access guidance, but far less common. ‘Other’ sources of guidance not listed here were chosen by 8% of parents/carers, this included recommendations from friends. Charities 5% and the government website 4% were the least chosen sources of guidance.
“School is my first port of call – being a special needs school they have a lot of info to share”.
“My son’s school has been extremely supportive and help if if I needed it. My daughter is going through the process of an ehcp and her school are amazing”.
“Sendiass very supportive when helping with tribunal for school placement”.
“I have had no issues with [my son’]s EHCP but I have had to contact SENDIASS and found them very helpful.”
Of the 799 parents/carers who answered this question they were most likely to access guidance online, with 73% choosing this option. This was followed by parents/carers choosing to access guidance via the telephone 32% and via in person settings 31%.
“I would always put issue into Google and follow links of interest from there”.
“Easy quick info, prefer telephone but most services do not provide numbers or commonly have deadlines or diverted to answer message without options to leave voicemails”.
“Prefer to speak to people so I can ask everything I need to know”.
“By post because if I choose by telephone possible, they call i don’t pick up, may be my phone will not be with me”.
The 799 parents/carers were quite evenly split over where they would likely turn to if they were to access guidance online, showing they use a variety of different sources. The most popular source of online guidance was school 32%, with SENDIASS being at 23%. This was closely followed by Local Authority 16%, Government website 13% and Charities 10% as the online source of guidance. Parent/carers also selected ‘Other’ 6% online sources not listed here, this included parent groups and websites such as the Independent Provider of Special Education Advice (IPSEA).
“I would find it helpful to also speak with other parents who have been in similar situations.”
“When I spoke to the charity SOSSEN* they gave me clear legal guidance on what my son was entitled to and we subsequently went to the SEND tribunal and won.”
“his school is the only people I go to as it’s a special school”.
The 799 parents/carers were mainly unsure about what would be most important to them when seeking guidance, at 47%. Of those who were sure, the most selected option was case studies of examples 37%. This was followed by colour/visual 19%, flowcharts 13% and less text 10%.
To understand more about why parents/carers thought certain forms of guidance were most important to them than others we asked the 799 parents/carers who responded to this question the following:
Please could you explain your reasoning to the above, in a few sentences?
211 parents/carers responded to this question.
Key themes were:
Guidance that is clear and easy to understand
For many families time is pressured and they needed something that would be quick and easy to understand. Part of these comments relate to presentation and part to the content of what families access. Jargon and being unable to find the key takeaways were identified as particular frustrations by parents.
It will easier to understand and find the information I am looking for (case studies/colour/visuals)
I need a quick and easy place to access and have the information all on one document with visual pictures or case studies to give examples (Colour/visuals/less text)
Simple, clear instructions, no lengthy paragraphs. Basic terms used (flowcharts/less text)
They like to use lots of babble to pad out information. I just want to find what I need and read the facts I don’t care about the rest when I’m looking for specific information, support or guidance.(Other: Clear to the point information. Facts not babble)
Just clear precise information without legal jargon just simple plain English with some pictures to point out what they are describing (less text)
Just need to key clear information not to be over whelmed with endless things that aren’t relevant (less text)
I find too much information is overwhelming for me. Like I probably won’t read it and just flick through. Like terms and conditions I go down it but never ever read it so I sign without knowing the full context. If something was written in shorter text and maybe had different pictures layout I might find it easier to read and easier to follow and understand and not be overwhelmed by it all. (Colour/visual/less text)
I feel some of the studies are over complicated with lots of different words and meanings (case studies/flowchart/colour/visuals/less text)
Often lots of jargon and links / other sites but no concrete information or way forward (case studies/colour/visuals)
Yes too much writing where the important essential is absolutely lost or unrecognized (I’m not sure).
I like simple, factual direct information. Too much text can discourage me from reading effectively. Case studies are helpful to understanding and opportunities. (case studies/flowcharts/less text)
So much writing makes it harder to take in (colour/visual)
Using simpler and fewer words that is easier to digest (flowcharts/less text)
As well as written presentation of information alternative ways of presenting information were important to parents/carers. For some parents/carers visual ways of communicating are more easily understood.
I prefer to visually read things than look at flow charts.(Colour/visuals)
It is how I understand information best (colour/visuals)
I like to see things as I find I understand better (Colour/visuals)
I’m more visual. (case studies/flowcharts)
Easier for me to process the information (colour/visuals)
I find it easier to take in info that is in picture or diagram form/ colourful and bite size. Case studies are also useful to find something that relates closely to your situation. (case studies/colour/visuals)
Within the visual presentation, flowcharts were particularly helpful, both as a way of presenting information concisely and to as a guide to the wider information available.
It’s a long and tiring process, and a flowchart would help me to understand what was coming next (flowcharts)
I choose flow chart because it’s like set of direction for me of where and whom I need to go. (flowcharts)
Be easier if information was simplified or seems to be a lot of words that some amount to anything when you are looking for a clear and concise answer (Flowcharts)
Flowcharts I would probably printout so I could refer to in meetings/ or on phone…. (case studies/flowcharts)
Case studies were an especially popular feature of guidance, and families felt that they were relatable, enabled parents/carers to see how things may apply in their own case and in some cases could provide direct guidance about how to phrase their own documentation.
so I can see how it works (case studies)
It explains the situation better. (case studies).
I would like it in case studies examples because I think it will make you understand better (case studies/Flowcharts/colour/visuals)
Because it would give me some ideas and help on how to deal with somethings (case studies)
Case study’s give examples which I can then apply to our situation (case studies)
..Case studies so I could use similar wording (case studies/flowcharts)
Examples can help you plan which way you need to approach or deal with the LA case studies)
In order to understand what they are looking for and qualifying arguments to get what is necessary in terms of provision I like to see examples so I can advocate for my child’s needs properly (case studies)
Lived experience and real world examples
Some families found hypothetical examples to be somewhat unrealistic and felt both more engaged by and better guided by real life examples. Some parent/carers reported that they trusted the experience of other parent/carers when trying to decide on actions for their own family. To some degree examples of other families experiences were seen as reducing the isolation families felt when tackling the EHCP process for their child.
I need to see real information about real families (case studies)
I feel like I would be interested in how they had helped others in similar situations (case studies)
Experience from other families that have been through or going through something similar (case studies).
I find these easier to interpret and know that it’s real life and people have experienced it (case studies).
See outcomes of similar cases/families (case studies)
Can’t beat advice or info from people with lived experience who understand Case studies show a real persons experience and some background information on what they have had to do. You don’t really know how to look after a disabled child until you have to so books from specialists ect don’t always help (case studies)
I like examples of what I should be expecting from the guidance with relatable scenarios. I clear outline of what I should expect, what to do if it doesn’t happen and what next steps to take and who to ask for help (case studies).
If you read the case studies it can let you realise that other families go through the same and can access help or have difficulty (case studies)
I like to read about real life situations to get an understanding and to also read about people in similar situations and what the future holds (case studies).
Case studies help you see what others have been through and what has helped that person going through the process. (case studies)
I need to know others have had positive experiences when seeking guidance. I need to speak to others in a similar position or who can relate to our situation (case studies)
A way to feel familiar with other people and be able to resonate with them (case studies)
Setting out evidence-based guidance and research of what works
The preference for case studies was not necessarily at the expense of statistical approaches. Some families clearly felt that statistics were more helpful to them when making decisions about what is best for their child. Some parents/carers also felt that interrogating the evidence was important and having clarity about what had evidence of working and what had less evidence was important to communicate.
I would like to know statistics of what has and hasn’t worked and why. The best way to do this is examine case studies. It’s always easier when this is visual. (case studies/visual)
It’s easier for me to look online as I can pick it up and put it down when my children need me. I like to look at facts and not opinions (case studies/flowcharts)
I need to know that what I’m being told is proven advice (case studies)
Like to have research (case studies)
Interested in looking into different methods and making sure advice has been tested (case studies)
Case studies give me some kind of example of evidence to fall back on and show how certain things may work in the real world (case studies)
Case studies – proven example What works what doesn’t (case studies)
I would want to see the case study works (case studies)
Rights and case law
Finally, for some parent/carers what they could realistically ask for within the bounds of their rights and what had been the outcome of case law was important.
Understanding where the law applies, especially with case law, helps us when negotiating. (case studies)
It is important to understand the legal rights to a child with SEN. It’s a shame most parents don’t and the local authority do not make this apparent because all they care about is “strain on the public purse” (case studies)
I would want to know my rights (I’m not sure)
Clear and legal guidelines (case studies)
Guidance addressing children and young people living with specific conditions and impairments
Some parents/carers felt that they did not necessarily have the advice they needed given the particular needs of their children. For these families, filtering advice by child’s needs would enhance the relevance and usability of the offer.
Every child is different, with their own unique needs, if past research and case studies could help improve the lives of my children I would naturally look into them (case studies)
Guidance that is for someone who has profound complex learning disabilities, that is virtually unable to communicate or understand why they can’t do what they want when they want, can’t understand dangers and have very challenging behaviours because of this (I’m not sure)
Every child is different so sometimes There’s so much text which doesn’t even apply to my child’s needs or health (Less text)
Examples of cases related to my child, easy to recognise charts and diagrams (case studies/flowchart/colour/visual)
All issues aren’t the same, neither are individuals’ experiences of them; case studies provide nuance. Visuals and charts are greatly digested forms of information. (case studies/flowchart/colour/visual)
- Only a minority of families had accessed mediation. The majority of families who are supported by Family Fund experience a range of disadvantages including at least one of parent/carer themselves being disabled, having multiple disabled children or being single adult households. Feedback from families highlights that the physical, mental and emotional burden of caring for their child is exacerbated when families experience some of these other key challenges. It may be the case that for some families there are barriers in accessing mediation more widely that need to be explored. Accessing information may be one of these barriers and should be further explored.
- Of families who had accessed mediation, the majority had accessed information, but around 40% of families did not report accessing information to support them in the process. Whilst parent/carers who had accessed information generally found the information easily and reported that it was helpful, we have no data about why the substantial minority of families who did not access support during the mediation did not access support. Future research better understanding those families who went into mediation without advice may prove valuable.
- Trusted professionals were the most important source of advice, with the internet being suggested for most parents/carers as an alternative, although phone and other types of advice were still important. Supporting this diversity in preferences is important.
- Many parent/carers of disabled children have their own disabilities and ensuring advice is accessible to parent/carers is important. A clear theme in the qualitative material was that parent/carers who were neurodivergent themselves found the mediation process and guidance on it difficult to access.
- Parents weren’t really sure about what they wanted from guidance when asked the closed question, but the qualitative responses highlighted a range of possibilities which should be taken into account.
Available alongside this summary report are:
- Data tables
- Full qualitative analysis