September 2023 Family Poll

Methodology

This report is the findings of the Q2 2023-24 Family Poll. In a break from previous Family Polls, we have themed this edition around education and learning.

Family Fund grants are often used by families on items to help with education and learning so we wanted to get an insight into how raising a child or young person with a serious illness or disability impacts on being able to take part in these activities.

Families were eligible to participate if they had not received a grant from Family Fund in the previous 12 months and had not been invited to take part in Family Poll in the previous 12 months. A random sample of eligible families were invited to take part. As a thank you for their participation, participants were offered the chance to enter a draw for a £100 Argos voucher.

The initial invitation was sent out on 20th September, with a follow up five days later to recipients who hadn’t opened the email.

Who took part?

How old are YOU?

48% of 774 respondents said they were aged between 35 to 44.

Under 18 – 6 (1%)
18 to 24 – 9 (1%)
25 to 34 – 188 (24%)
35 to 44 – 373 (48%)
45 to 54 – 173 (22%)
55 to 64 – 22 (3%)
65 or over – 3 (0%)

What is YOUR gender?

94% of 774 respondents said they were female.

Female – 729 (94%)
Male – 43 (6%)
Prefer not to say – 2 (0%)
My gender is not listed (please specify) – 0 (0%)

Which of the following countries or regions do YOU currently live in?

66% of 774 respondents were from England, with a relatively even spread through the regions. 22% of the respondents were from Scotland.

England – North East – 53 (7%)
England – Yorkshire & Humber – 55 (7%)
England – North West – 70 (9%)
England – West Midlands – 48 (6%)
England – East Midlands – 44 (6%)
England – East of England – 29 (4%)
England – South East – 90 (12%)
England – London – 76 (10%)
England – South West – 45 (6%)
Scotland – 170 (22%)
Wales – 19 (2%)
Northern Ireland – 75 (10%)

What is YOUR ethnic group?

In England, Scotland, and Wales there were 699 respondents, of these, 82% said they were White, 6% said they were Black and 6% said they were Asian.
The answer options are slightly different for Northern Ireland, and of 75 respondents, 100% said they were White.

White – British/English/Welsh/Scottish/Northern Irish – 535 (77%)
White – Irish – 4 (1%)
White – Other – 37 (5%)
Black or Black British – Caribbean – 6 (1%)
Black or Black British – African – 30 (4%)
Black or Black British – Other – 3 (0%)
Gypsy or Traveller – 2 (0%)
Asian or Asian British – Indian – 4 (1%)
Asian or Asian British – Pakistani – 18 (3%)
Asian or Asian British – Bangladeshi – 9 (1%)
Asian or Asian British – Chinese – 2 (0%)
Asian or Asian British – Other – 6 (1%)
Arab – 7 (1%)
Mixed – White and Black Caribbean – 9 (1%)
Mixed – White and Black African – 3 (0%)
Mixed – White and Asian – 5 (1%)
Mixed – Other – 4 (1%)
Prefer not to say – 12 (2%)
Prefer to use another term (please specify) – 3 (0%)

[GROUPED] White – 576 (82%)
[GROUPED] Black or Black British – 39 (6%)
[GROUPED] Asian or Asian British – 39 (6%)
[GROUPED] Mixed – 21 (3%)
[GROUPED] Other – 24 (3%)

What is YOUR current housing tenure?

Of 774 respondents, 55% said they rent their home in the social rented sector and 22% said they own their own home outright or with a mortgage.

Own your own home – own outright with no mortgage – 29 (4%)
Own your own home – have a mortgage – 140 (18%)
Rent your home – social rented sector – 423 (55%)
Rent your home – private rented sector – 145 (19%)
Living in temporary or emergency housing – 14 (2%)
Tied accommodation – 2 (0%)
Other – 21 (3%)

Do YOU have any long-term physical or mental health conditions or illnesses lasting or expected to last 12 months or more?

Of 774 parent/carers, 52% said they have long term physical or mental health conditions lasting 12 months or more.

Yes – 401 (52%)
No – 333 (43%)
Prefer not to say – 40 (5%)

Do any of YOUR health conditions or illnesses reduce your ability to carry out day-to-day activities?

Of the 401 parent/carers that said yes to having a long-term condition, 77% said their conditions or illnesses reduce their ability to carry out day to day activities.

Yes – 309 (77%)
No – 63 (16%)
Prefer not to say – 29 (7%)

How many adults live in your household?

Of 372 respondents, 42% said they are the only adult in their household, with another 42% saying there is two adults in their household. In total, there is around 674 adults in the households of those that responded to this question.

1 – 157 (42%)
2 – 158 (42%)
3 – 39 (10%)
4 – 10 (3%)
5 – 4 (1%)
More than 5 – 4 (1%)

How many non-disabled children (aged under 18) live in your household?

Of 360 respondents, 39% said there is one non-disabled child living in the household. In total, there is around 693 non-disabled children living in the household of those that responded to the question.

1 – 139 (39%)
2 – 136 (38%)
3 – 65 (18%)
4 – 12 (3%)
5 – 3 (1%)
More than 5 – 4 (1%)
No other children – 1 (0%)

How are the people in your household related to you?

My partner – 166 (46%)
My children (aged under 18) – 346 (96%)
My children (aged over 18) – 63 (18%)
My grandchildren (aged under 18) – 6 (2%)
My grandchildren (aged over 18) – 0 (0%)
My partner’s children/grandchildren (aged under 18) – 3 (1%)
My partner’s children/grandchildren (aged over 18) – 2 (1%)
Other child relatives (aged under 18, e.g., niece/nephew) – 0 (0%)
Other child non-relatives (aged under 18, e.g., foster child) – 1 (0%)
Other adult relatives (e.g., my parents, my child’s partner) – 7 (2%)
Other adult non-relatives (e.g., lodger, housemates) – 2 (1%)
Other – 6 (2%)

Are YOU the main carer for your disabled or seriously ill child/children?

Of 360 respondents, 75% said they are the sole main carer for the children.

I am the sole main carer for the child/ren – 270 (75%)
I am the joint main carer for the child/ren – 89 (25%)
Someone else is the main carer for the child/ren – 1 (0%)

Employment and caring

Are you employed?

Of 360 respondents, 47% said they are full time carers, with 7% being full time employed/self-employed.

Full-time employed – 23 (6%)
Full-time self employed – 2 (1%)
Part-time employed – 69 (19%)
Part-time self-employed – 15 (4%)
Unemployed and seeking work – 3 (1%)
Full time carer – 169 (47%)
Unable to work because of your own disability or sickness – 49 (14%)
Full time student – 6 (2%)
Retired – 2 (1%)
Not working for another reason – 22 (6%)

Do your caring responsibilities for your disabled child or young person mean you cannot work as much as you would like?

Of 360 parent/carers, 57% said they are unable to work as a result of their caring responsibilities for their disabled child or young person.

I am unable to work – 205 (57%)
I am unable to work as many hours as I’d like – 102 (28%)
It does not affect me being able to work as much as I’d like – 27 (8%)
I don’t know – 26 (7%)

About how many hours a week, on average, do you spend providing help for or looking after your disabled children?

Of 360 parent/carers, 54% said that, on average, they spend 100 or more hours a week providing help or looking after their disabled children.

0 to 4 hours per week – 2 (1%)
5 to 9 hours per week – 1 (0%)
10 to 19 hours per week – 7 (2%)
20 to 34 hours per week – 16 (4%)
35 to 49 hours per week – 42 (12%)
50 to 99 hours per week – 63 (18%)
100 or more hours per week – 196 (54%)
I don’t know – 33 (9%)

Educational placement

Is your disabled or seriously ill child or young person registered at an education provider?

Of 360 respondents, 74% said their disabled or seriously ill child or young person is registered at an education provider.

Yes – 265 (74%)
No – 95 (26%)

Does your disabled or seriously ill child or young person attend an educational placement full time in a typical week?

Of 265 responses, 69% said their child attends an educational placement full time.

Full time for a child of their age in a typical week – 183 (69%)
Part time for a child of their age in a typical week – 23 (9%)
They don’t normally attend their educational placement – 9 (3%)
Sometimes full time, sometimes part time – 20 (8%)
Sometimes full time, sometimes not at all – 9 (3%)
Sometimes part time, sometimes not at all – 12 (5%)
I don’t know – 9 (3%)

What kind of educational placement is your disabled or seriously ill child or young person registered at?

Of 265 responses, 33% of families reported their disabled or seriously ill child is registered at a state special day school.

A state mainstream day school – 126 (48%)
A state special day school – 87 (33%)
An independent mainstream day school – 5 (2%)
An independent special day school – 12 (5%)
A state mainstream residential school – 0 (0%)
A state special residential school – 3 (1%)
An independent mainstream residential school – 0 (0%)
An independent special residential school – 2 (1%)
A pupil referral unit/alternative provision – 12 (5%)
A hospital school – 0 (0%)
Home tuition by the LA – 2 (1%)
Home educated by parent/carer (elective) – 1 (0%)
An online school – 2 (1%)
Further education college – 8 (3%)
Vocational college – 2 (1%)
They are not currently registered with a school, but I/they would like to be – 3 (1%)

Does your disabled or seriously ill child or young person attend the same placement as they are registered at?

Of 265 responses, 85% said their child attends the same placement as they are registered at.

Yes – 224 (85%)
No – 19 (7%)
I don’t know – 22 (8%)

What type of placement does your disabled or seriously ill child or young person attend?

Of 265 responses, 51% said their child attends a state mainstream day school.

A state mainstream day school – 135 (51%)
A state special day school – 79 (30%)
An independent mainstream day school – 4 (2%)
An independent special day school – 10 (4%)
A state mainstream residential school – 1 (0%)
A state special residential school – 4 (2%)
An independent mainstream residential school – 2 (1%)
An independent special residential school – 1 (0%)
A pupil referral unit/alternative provision – 11 (4%)
A hospital school – 0 (0%)
Home tuition by the LA – 3 (1%)
Home educated by parent/carer (elective) – 3 (1%)
An online school – 3 (1%)
Further education college – 7 (3%)
Vocational college – 1 (0%)
Higher education (e.g., university) – 1 (0%)
Residential independent living placement – 0 (0%)
Day independent living placement – 0 (0%)
Supported internship/apprenticeship/work placement – 0 (0%)
Apprenticeship/traineeship – 0 (0%)

Why is your child not attending the placement they are registered at?

Of 265 responses, 19% of families reported their child is not attending the placement they are registered at because they do not think the placement can meet their needs.

I/we do not think the placement they have can meet their needs – 51 (19%)
The placement has told us that they cannot meet their needs – 24 (9%)
The placement asked us to remove our child – 4 (2%)
My child has been temporarily excluded – 5 (2%)
M child has been permanently excluded and no new permanent placement found – 3 (1%)
My child is temporarily unable to attend their usual placement because of a health problem – 27 (10%)
My child is no longer able to attend their usual placement because of a health problem and a new placement found – 7 (3%)
Other (please specify) – 167 (63%)

Attendance and ability to access employment

Are you able to work as much as you would like when your disabled or seriously ill child or young person is attending their placement?

Of 265 responses, 55% said they are not able to work as much as they would like while their child is attending their placement.

I am able to work as much as I’d like – 35 (13%)
I do not wish to work – 32 (12%)
I am not able to work as much as I would like – 145 (55%)
I’m not sure – 53 (20%)

Why are you not able to work as much as you would like when your disabled or seriously ill child is attending their placement?

Of the 145 people that said they are not able to work as much as they would like, 57% reported this is because they need to look after their child during the holidays from their placement. 45% said their child often needs to come home at short notice.

I don’t have enough hours on a normal day – 43 (30%)
I need to look after my disabled or seriously ill child or young person during the holidays from their placement – 83 (57%)
I need to go into their placement to support my disabled or seriously ill child/young person – 18 (12%)
My disabled or seriously ill child/young person often need to come home at short notice – 65 (45%)
My disabled or seriously ill child/young person is often absent from their placement – 26 (18%)
My disabled or seriously ill child/young person spends fewer hours at their placement than a non-disabled child/young person their age – 21 (14%)
I need to pick up my disabled or seriously ill child/young person from their placement, when a non-disabled child/young person of their age would not need me to do this – 43 (30%)
MY disabled or seriously ill child/young person needs me to be at home at the end of their day more than a non-disabled child/young person their age – 64 (44%)
I can’t access suitable wrap around care, limiting my ability to work – 55 (38%)
I don’t know – 3 (2%)
Other (please specify) – 17 (12%)

Additional learning support

Does your disabled or seriously ill child or young person need additional support whilst learning?

Of 265 responses, 86% of families report that their child needs additional support managing their emotions while learning and 77% report their child needs additional support to communicate with others while learning.

Support to take part locally – 225 (85%)
Support managing their emotions – 229 (86%)
Support with their mental health – 179 (68%)
Support with their mobility – 100 (38%)
Support to understand their environment – 198 (75%)
Support to communicate with others – 204 (77%)
Support to concentrate – 211 (80%)
Support with eating/drinking – 113 (43%)
Support with hygiene – 171 (65%)
Support to manage medications – 102 (38%)
Support with academic learning – 208 (78%)
My child does not need support whilst learning – 7 (3%)

Does your disabled or seriously ill child or young person receive the learning support you think they need at school?

Of 265 responses, 40% said their child gets all the support they need at school.

All the support they need – 105 (40%)
Most of the support they need – 74 (28%)
A bit of the support they need – 70 (26%)
None of the support they need – 14 (5%)
They don’t need support whilst learning – 2 (1%)

Are your disabled or seriously ill child or young person’s support needs formalised in an EHCP/IDP/SEN Statement?

Of 265 responses, 78% said their child’s support needs are formalised in an EHCP/IDP/SEN Statement.

Yes – 207 (78%)
No – 58 (22%)

Does the plan outline all of the support your disabled or seriously ill child or young person needs to thrive?

Of these 207 responses, 79% agree/strongly agree that their plan outlines all of the support their child needs to thrive.

Strongly agree – 71 (34%)
Agree – 94 (45%)
Nether agree nor disagree – 30 (14%)
Disagree – 10 (5%)
Strongly disagree – 2 (1%)

Does your disabled or seriously ill child get all of the support outlined in their plan?

Of 207 responses, 29% said that their child gets all of the support outlined in their plan.

All of it – 61 (29%)
Most of it – 76 (37%)
Some of it – 48 (23%)
Little of it – 14 (7%)
None of it – 8 (4%)

Why do you think your disabled or seriously ill child or young person doesn’t get the support outlined in their plan?

Of 70 responses, 33% said they think their child doesn’t get the support outlined in their plan because their local LA/NHS Trust cannot afford to provide some of the support.

I don’t agree that the support outlined in the plan is what my child needs – 10 (14%)
My child is on a waiting list for some of the support – 18 (26%)
Some of the support outlined is no longer available in my area – 10 (14%)
My LA/local NHS trust cannot afford to provide some of the support – 23 (33%)
My child no longer meets the eligibility criteria for some of the support – 2 (3%)
My child’s personal budget is too low for the support suggested – 10 (14%)
The service provider is unsuitable – 7 (10%)
My child’s educational placement isn’t suitable for them, so they no longer attend/have limited attendance – 13 (19%)
Other – 18 (26%)

Disability premium of accessing education

Food

Does your disabled or seriously ill child ever eat a meal provided by their school or education provider?

Of 265 responses, 56% said ‘Yes’

Yes – 148 (56%)
No – 108 (41%)
I don’t know – 9 (3%)

Why doesn’t your child ever eat a meal provided by their school or education provider?

Of the 108 that said no, their child doesn’t ever eat a meal provided by their education provider, 49% said this is because their child prefers to eat a packed lunch.

My child’s provider does not provide meals – 12 (11%)
Because they are never present during a mealtime – 14 (13%)
Because my child has a prescribed diet – 4 (4%)
Because my child needs a particular nutritional mix – 3 (3%)
Because they have food intolerances or allergies, and the school meals cannot be guaranteed to be allergen free – 6 (6%)
My child prefers to eat a packed lunch – 53 (49%)
School meals aren’t suitable for my child’s dietary preferences – 3 (3%)
School meals don’t meet our religious requirements – 2 (2%)
My child does not like the food offered by the provider – 48 (44%)
My child doesn’t eat outside of the home – 10 (9%)
My child doesn’t like eating with other people – 23 (21%)
Other (please specify) – 18 (17%)

Do you think you need to spend more on school food as a direct result of your child’s disability?

Of 265 responses, 38% said they always need to spend more on school food as a direct result of their child’s disability.

Always – 101 (38%)
Often – 37 (14%)
Sometimes – 44 (17%)
Rarely – 21 (8%)
Never – 62 (23%)

How much more per week do you have to spend on food to be eaten at school on average as a result of your child’s disability or illness?

Of the 182 that said they spend more on food, 38% said they had to spend £15 or more a week.

Less than £1 – 8 (4%)
£1.01 – £2.50 – 5 (3%)
£2.51 – £5.00 – 14 (8%)
£5.01 – £7.50 – 10 (5%)
£7.51 – £10.00 – 27 (15%)
£10.01 – £15 – 49 (27%)
More than £15 – 69 (38%)

How easy is it for you to afford food for your disabled or seriously ill child or young person to eat at school?

Of 265 responses, 48% said it is not very easy/not at all easy to afford food for their child to eat at school.

Very easy – 21 (8%)
Easy – 17 (6%)
Neither easy nor difficult – 98 (37%)
Not very easy – 91 (34%)
Not at all easy – 38 (14%)

Do you ever have to cut back on spending for food, bills, mortgage/rent to afford school food for your disabled or seriously ill child or young person?

Of 265 responses, 35% said they have had to cut back on spending for household costs to afford school food for their child.

This has happened – 92 (35%)
This has not happened yet, but I am worried it might – 85 (32%)
This has never happened – 88 (33%)

Is your disabled or seriously ill child eligible for income assessed Free School Meals?

Of 265 responses, 64% said their child is eligible for free school meals.

Yes – 169 (64%)
No – 72 (27%)
I don’t know – 24 (9%)

Does the amount available for lunch through the free school meals programme actually meet the costs of a nutritious meal at your child’s school?

Of 169 responses, 32% said the amount available for lunch through the free school meals programme doesn’t meet the costs of a nutritious meal at their child’s school.

Does your disabled or seriously ill child take up the offer of free school meals?

Of 169 responses, 36% said their child always takes up the offer of free school meals.

Always – 60 (36%)
Often – 19 (11%)
Sometimes – 30 (18%)
Rarely – 16 (9%)
Never – 44 (26%)

Why does your disabled or seriously ill child not eat free school meals?

Of 44 responses, 61% said their child doesn’t eat the free school meals because they do not like the food offered by the provider.

My child’s provider does not provide meals – 2 (5%)
Because they are never present during a mealtime – 5 (11%)
Because my child has a prescribed diet – 3 (7%)
Because my child needs a particular nutritional mix – 0 (0%)
Because they have food intolerances or allergies, and the school meals cannot be guaranteed to be allergen free – 2 (5%)
My child prefers to eat a packed lunch – 21 (48%)
School meals aren’t suitable for my child’s dietary preferences – 5 (11%)
School meals don’t meet our religious requirements – 1 (2%)
My child does not like the food offered by the provider – 27 (61%)
My child doesn’t eat outside of the home – 5 (11%)
My child doesn’t like eating with other people – 10 (23%)
Other (please specify) – 4 (9%)

Uniform

Do you have to spend more on your child’s uniform as a result of their disability or serious illness?

Of 265 responses, 67% said they do have to spend more on their child’s uniform as a result of their disability or serious illness.

Yes – 178 (67%)
No – 78 (29%)
I don’t know – 9 (3%)

Why do you have to spend more on school uniform as a result of their disability or serious illness?

Of 265 responses, 50% said they spend more on school uniform because their child’s clothes/shoes wear out more quickly as a result of their disability or serious illness.

My child needs specialist clothes/shoes – 86 (32%)
My child’s clothes/shoes wear out more quickly – 133 (50%)
My child needs more changes of clothes/shoes – 117 (44%)
My child is unable to wear handed down clothes/shoes or hand on clothes/shoes – 37 (14%)
My child needs clothes/shoes in a non-standard size – 40 (15%)
My child is dual registered as a result of their disability or illness and needs a different uniform for each of their placements – 3 (1%)
My child attends a residential placement so they need more clothes/shoes than they would if they were at a day time only placement – 5 (2%)
Other (please specify) – 64 (24%)

How much more do you think you spend on school uniform per year as a result of your child’s disability or serious illness?

Of 265 responses, 26% said they spend more than £200 more on school uniform per year as a result of their child’s disability or serious illness.

Under £25 – 18 (7%)
£25-£50 – 24 (9%)
£50-£100 – 50 (19%)
£100-£150 – 60 (23%)
£150-£200 – 44 (17%)
More than £200 – 69 (26%)

How easy is it for you to afford all the school uniform and shoes your disabled or seriously ill child requires?

Of 265 responses, 66% said it is not very or not at all easy to afford all the school uniform and shoes their child requires.

Very easy – 4 (2%)
Easy – 10 (4%)
Neither easy nor difficult – 75 (28%)
Not very easy – 117 (44%)
Not at all easy – 59 (22%)

Does your disabled or seriously ill child ever to go without school uniform/shoes?

Of 265 responses, 22% said their child goes without school uniform some of the time/often/all of the time.

All of the time – 7 (3%)
Often – 6 (2%)
Sometimes – 44 (17%)
Rarely – 48 (18%)
Never – 160 (60%)

Do you ever have to cut back on spending for food, bills, mortgage/rent to afford school uniform for your disabled or seriously ill child?

Of 265 responses, 43% said they have had to cut back on spending for household costs to afford school uniform for their child.

This has happened – 115 (43%)
This has not happened yet, but I am worried it might – 90 (34%)
This has never happened – 60 (23%)

Transport

How does your disabled or seriously ill child or young person normally get to school?

Of 265 responses, 35% said their child gets to school by transport paid for by the LA. 43% said their child is driven by their parent/carer or a family member.

Walk – 39 (15%)
School transport paid for by the LA – 94 (35%)
School transport paid for by me – 3 (1%)
Public transport – 12 (5%)
They are driven by me/family member – 115 (43%)
We share a lift with a friend – 2 (1%)

Do you have to pay more for your disabled or seriously ill child to get to school than you would if they were not disabled or seriously ill?

Of 265 responses, 27% said they have to pay more for their child to get to school as a result of their disability or serious illness.

Yes – 72 (27%)
No – 159 (60%)
I don’t know – 34 (13%)

How much more do you spend per week on getting to school as a result of your child’s illness or disability?

Of these, 38% said they spend more than £25 more a week on getting their child to school as a result of their disability or illness.

£5 or less – 1 (1%)
£5.01 – £10 – 4 (6%)
£10.01 – £15 – 10 (14%)
£15.01 – £20 – 13 (18%)
£20.02 – £25 – 17 (24%)
More than £25 – 27 (38%)

How easy is it for you to afford the costs of getting your disabled or seriously ill child to school?

Of 265 responses, 32% said it is not very or not at all easy to afford the costs of getting their child to school.

Very easy – 43 (16%)
Easy – 32 (12%)
Neither easy nor difficult – 105 (40%)
Not very easy – 58 (22%)
Not at all easy – 27 (10%)

Does your disabled or seriously ill child ever miss school as a result of you being unable to afford to get them there?

Of 265 responses, 82% said their child never misses school as a result of them being unable to afford getting them there.

Always – 3 (1%)
Often – 4 (2%)
Sometimes – 13 (5%)
Rarely – 29 (11%)
Never – 216 (82%)

Have you ever had to cut back on spending for food, bills, mortgage/rent to afford to get your disabled or seriously ill child to school?

Of 265 responses, 45% said they have either cut back on spending for household costs or they are worried they will have to, to afford to get their child to school.

This has happened – 48 (18%)
This has not happened yet, but I am worried it might – 70 (26%)
This has never happened – 147 (55%)

Equipment

Do you need to spend more on school equipment for your disabled or seriously ill child or young person than you would if they were not disabled?

Of 265 responses, 35% said they need to spend more on school equipment for their child as a result of their disability or serious illness.

Yes – 94 (35%)
No – 117 (44%)
I don’t know – 54 (20%)

How much extra do you think you spend a year on school equipment as a result of your child’s disability or serious illness?

Of those, 45% said they spend more than £100 a year on school equipment for their child as a result of their disability or serious illness.

Under £25 – 6 (6%)
£25-£50 – 22 (23%)
£50-£100 – 24 (26%)
£100-£150 – 14 (15%)
£150-£200 – 11 (12%)
More than £200 – 17 (18%)

How easy is it for you to afford all the specialist/extra school equipment you need for your disabled or seriously ill child or young person?

Of 265 responses, 35% said it is not very or not at all easy to afford the school equipment they need for their child.

Very easy – 11 (4%)
Easy – 18 (7%)
Neither easy nor difficult – 141 (53%)
Not very easy – 70 (26%)
Not at all easy – 25 (9%)

Does your disabled or seriously ill child have all the specialist/extra equipment that they need to fully participate at school?

Of 265 responses, 36% said their child never has everything they need to fully participate at school.

They have all of what they need – 20 (8%)
They have most of what they need – 61 (23%)
They have some of what they need – 88 (33%)
They never have everything they need – 96 (36%)

Have you ever had to cut back on spending for food, bills, mortgage/rent to afford the specialist/extra equipment your disabled or seriously ill child or young person needs for school?

Of 265 responses, 55% said they have either cut back on spending for household costs or they are worried they will have to, to afford the equipment their child needs for school.

This has happened – 56 (21%)
This has not happened yet, but I am worried it might – 90 (34%)
This has never happened – 119 (45%)

Transitions to adulthood

Transitions

Have you begun the process of transferring from children to adult services for your disabled or seriously ill children?

Of 360 responses, 63% said their child or young person is too young for the transfer to adult services to have begun.

Yes, my child or young person has fully transferred to adult services – 0 (0%)
yes, my child or young person has begun the process of transferring to adult services – 12 (3%)
Yes, but the planning process for my child or young person to transfer to adult services has begun – 11 (3%)
No, but I think the planning process should have begun – 13 (4%)
No, but I think the transfer should have started – 9 (3%)
No, my child or young person is too young for the transfer to adult services to have begun – 227 (63%)
No, my child or young person is not going to transfer to adult services (for any reason) – 24 (7%)
I’m not sure – 64 (18%)

Why is your child or young person not going to transfer from children’s to adult’s services?

“Paediatrician wants to see him again before discharging, not sure about other services as no TAC meeting has taken place”

“This hasn’t been discussed so I’m not entirely sure what this process is.”

“Haven’t had any information on it”

“I have no communication with the services”

To what extent do you agree or disagree: “The transition process has included my disabled or seriously ill child/young person in a way that is appropriate to their needs and abilities”

Of 24 responses, 29% agree/strongly agree that transition process has included their disabled or seriously ill child/young person in a way that is appropriate to their needs and abilities.

Strongly agree – 1 (4%)
Agree – 6 (25%)
Neither agree nor disagree – 13 (54%)
Disagree – 2 (8%)
Strongly disagree – 2 (8%)

To what extent do you agree or disagree: “We have had enough information about the transition process for my disabled or seriously ill child/young person”

Of 24 responses, 29% disagree/strongly disagree that they have had enough information about the transition process for their child.

Strongly agree – 1 (4%)
Agree – 4 (17%)
Neither agree nor disagree – 12 (50%)
Disagree – 5 (21%)
Strongly disagree – 2 (8%)

To what extent do you agree or disagree: “I am confident that my disabled or seriously ill child/young person’s needs will be met by adult services”

Of 24 responses, 34% disagree/strongly disagree that they are confident their child’s needs will be met by adult services.

Strongly agree – 2 (8%)
Agree – 4 (17%)
Neither agree nor disagree – 10 (42%)
Disagree – 4 (17%)
Strongly disagree – 4 (17%)

Changing support

Are any of the disabled children and young people in your family between 16 and 24?

Of 360 responses, 18% of households have disabled children and young people between the age of 16 and 24.

Yes – 65 (18%)
No – 295 (82%)

When your child was younger, did you claim child disability benefits for your disabled or seriously ill child or young person?

Of 116, responses, 78% said they claimed disability benefits for their child or young person when they were younger.

Yes – 91 (78%)
No – 19 (16%)
I don’t know – 6 (5%)

How has the transition to adult disability benefits from child disability benefits changed your family’s financial position?

Of 115 responses, 10% said they are worse off now that their child is claiming adult disability benefits.

We are better off now my child is claiming adult disability benefits – 4 (3%)
We are about the same now my child is claiming adult disability benefits – 17 (15%)
We are worse off now my child is claiming adult disability benefits – 11 (10%)
I’m not sure – 83 (72%)

Why has your disabled or seriously ill child or young person not transferred to adult disability benefits?

Of 62 responses, 11% said their child does not meet the eligibility criteria for adult benefits.

My child does not meet the eligibility criteria for adult benefits – 7 (11%)
My child needs someone to apply on their behalf and we haven’t had authority to do this – 3 (5%)
My child doesn’t want to apply – 2 (3%)
I do not want my child to apply – 0 (0%)
My child’s circumstances mean that they have not applied – 1 (2%)
I’m not sure – 17 (27%)
Other (please specify) – 32 (52%)

Changes to everyday costs

As a result of your children’s conditions or illness, have you had to buy any of the following specialist items and services using our own money?

Of 115 responses, 59% said they had to buy specialist toys and play equipment for their child.

Specialist equipment (wheelchair, specialist buggies, specialist car seats) – 19 (17%)
Specialist toys and play equipment (bicycle, sensory toys, sports equipment) – 68 (59%)
Home or garden adaptations (stair lifts, heating systems) – 23 (20%)
Private therapies – 26 (23%)
Specialist car or vehicle – 8 (7%)
Private carer or personal assistant – 4 (3%)
Specialist educational materials and items – 7 (6%)
Respite care or short breaks from caring – 37 (32%)
None of the above – 12 (10%)
Other (please specify) – 27 (23%)

Are the specialist costs of supporting your child/young person’s disability lower, the same or higher than they were when your child/young person was younger?

Of 115 responses, 49% said the costs of supporting their child/young person’s disability are higher than when their child was younger.

Higher – 56 (49%)
About the same – 52 (45%)
Lower – 7 (6%)

Why are the specialist costs higher as your child has got older?

Of those, 59% said this is because things are more expensive in larger sizes/suitable for older children/young people.

Everything has got more expensive, and specialist costs are no exception – 44 (79%)
Things don’t last as well as my child has got bigger and older – 33 (59%)
Things are more expensive in larger sizes/suitable for older children/young people – 33 (59%)
My child/young person needs more specialist items as they get older – 13 (23%)
I don’t know – 2 (4%)
Other (please specify) – 0 (0%)

As a result of your children’s conditions or illness, do you have to pay more for any of these household items?

Of 115 responses, 83% said they pay more for food groceries for their child as a result of their disability or illness.

Beds and bedding – 65 (57%)
Car or vehicle – 21 (18%)
Childcare – 7 (6%)
Cleaning products – 44 (38%)
Clothing – 90 (78%)
Day trips or family breaks – 70 (61%)
Energy – 60 (52%)
Food groceries – 95 (83%)
Furniture – 43 (37%)
Home telephone or broadband – 45 (39%)
Hospital visits – 38 (33%)
Insurance policies – 14 (12%)
Replacing worn or broken household items – 76 (66%)
Tablets, computers, and laptops – 88 (77%)
Toiletries and personal hygiene products – 66 (57%)
Transport – 34 (30%)
White goods and kitchen appliances – 28 (24%)
None of the above – 2 (2%)
I don’t know – 4 (3%)
Other (please specify) – 1 (1%)

Are the increased everyday costs you pay as a result of your child/young person’s disability or serious illness lower, the same or higher than they were when your child/young person was younger?

Of 109 responses, 72% said everyday costs they pay as a result of their child’s disability or illness are higher than when their child was younger.

Higher – 78 (72%)
About the same – 31 (28%)
Lower – 0 (0%)

Why do you think everyday costs have got more as your child has got older?

Of 109 responses, 52% said their everyday costs are higher than when their child was younger because they need to use more everyday things as my child gets older.

Everything has got more expensive in general – 100 (92%)
We need to use more everyday things as my child gets older – 57 (52%)
We have to buy more expensive versions of things as my child gets older – 42 (39%)
My child’s development is increasingly further away from their non disabled or seriously ill peers – 23 (21%)
Things wear out more quickly as my child gets older – 41 (38%)
My child’s needs have changed as they get older – 42 (39%)
I don’t know – 2 (2%)
Other (please specify) – 2 (2%)

Changing support

As your disabled or seriously ill child or young person has got older, do you think the support available to you as a family has changed?

Of 115 responses, 52% agree/strongly agree that the support available to them as a family has changed as their child has got older.

Strongly agree – 27 (23%)
Agree – 33 (29%)
Neither agree nor disagree – 46 (40%)
Disagree – 6 (5%)
Strongly disagree – 3 (3%)

Do you think that the support available to you as a family has got better or worse as your disabled or seriously ill child or young person has got older?

Of 106 responses, 57% said that the support available to them as a family has got worse as their child has got older.

Much better – 3 (3%)
A bit better – 7 (7%)
About the same – 35 (33%)
A bit worse – 34 (32%)
Much worse – 27 (25%)

Why would you say that was the case?

46 families responded to tell us more about why they think the support available has got better or worse as their child has got older.

“Support is practically non-existent since my eldest became 18.”

“Very little guidance and no intervention at all. The only help we ever got was training for me as a parent.”

“There are no services or help for any mental wellbeing for a child aged between 15-18. My son has seriously suffered from lack of healthcare.”

“He has a youth worker, and they seem to be helping him a lot more.”

Celebrating special occasions

Is your disabled or seriously ill child or young personable to join in as much as you would like with the following special activities your might do to celebrate a special occasion or festival?

Sharing a special meal with family (e.g., Christmas dinner or an Iftar during Ramadan)

Of 210 responses, 58% said their child is able to join in sharing a special meal with family with some changes/adaptations.

Without any changes / adaptations – 36 (17%)
With some changes / adaptations – 121 (58%)
My child can’t join in – 28 (13%)
I’m not sure – 14 (7%)
We don’t do this as a family – 11 (5%)

Doing a special family activity (e.g., visiting Santa at Christmas or watching a firework display at Diwali)

54% of families said their child could join in doing a special family activity with some changes or adaptations.

Without any changes / adaptations – 23 (11%)
With some changes / adaptations – 114 (54%)
My child can’t join in – 39 (19%)
I’m not sure – 17 (8%)
We don’t do this as a family – 17 (8%)

Wearing special clothes or dressing up (e.g., Christmas jumper or new clothes for Eid)

47% of families said their child could join in wearing special clothes or dressing up with some changes or adaptations.

Without any changes / adaptations – 46 (22%)
With some changes / adaptations – 99 (47%)
My child can’t join in – 33 (16%)
I’m not sure – 15 (7%)
We don’t do this as a family – 17 (8%)

Visiting a church / mosque / temple or other place of worship

20% of families said their child can’t join visiting a place of worship with their family.

Without any changes / adaptations – 22 (10%)
With some changes / adaptations – 48 (23%)
My child can’t join in – 43 (20%)
I’m not sure – 17 (8%)
We don’t do this as a family – 80 (38%)

Traditional singing / dancing / acting (e.g., a nativity play or the songs for the Gurpurab of Guru Nanak Dev)

25% of families said their child can’t join in with traditional singing / dancing / acting.

Without any changes / adaptations – 19 (9%)
With some changes / adaptations – 61 (29%)
My child can’t join in – 53 (25%)
I’m not sure – 24 (11%)
We don’t do this as a family – 53 (25%)

Playing special games (e.g., board games or dreidel)

47% of families said their child could join in playing special games with some adaptations or changes.

Without any changes / adaptations – 28 (13%)
With some changes / adaptations – 99 (47%)
My child can’t join in – 39 (19%)
I’m not sure – 24 (11%)
We don’t do this as a family – 20 (10%)

Decorating the house (e.g., with a Christmas tree or Rangoli)

50% of families said their child could join in decorating the house with some adaptations or changes.

Without any changes / adaptations – 51 (24%)
With some changes / adaptations – 105 (50%)
My child can’t join in – 28 (13%)
I’m not sure – 17 (8%)
We don’t do this as a family – 9 (4%)

Are your family and friends able to adapt the way they celebrate festivals or special occasions to enable your disabled or seriously ill child or young person to take part?

19% of families said their family and friends are always able to adapt the way they celebrate festivals or special occasions to enable their child to take part.

Always – 40 (19%)
Often – 35 (17%)
Sometimes – 84 (40%)
Rarely – 18 (9%)
Never – 16 (8%)
We don’t celebrate festivals in this way – 17 (8%)

Do festivals and special occasions create challenges for your disabled or seriously ill child or young person’s routine?

Of 210 responses, 44% of families said festivals and special occasions create lots of challenges for their child’s routine.

No challenges – 8 (4%)
Some challenges – 84 (40%)
Lots of challenges – 93 (44%)
I’m not sure – 12 (6%)
We don’t celebrate festivals in this way – 13 (6%)

What kind of challenges do festivals and special occasions create for your disabled or seriously ill child or young person’s routine?

“My children can become overwhelmed especially during the Christmas period with the changes to their routine, the shops being over crowded, and the lead up to Christmas Day.”

” … creates lots of sensory triggers for my child. Glitter everywhere, temperature changes, different smells and sounds.”

“Special occasions are unpredictable, lots of noise, different decorations, lots of people, different clothes, the house changes etc.”

Do you ever feel left out at festivals or celebrations that are important to you because of your child’s disability or serious illness?

Of 210 responses, 81% of families said they have felt left out at festivals or celebrations because of their child’s disability or serious illness.

Always – 25 (12%)
Often – 42 (20%)
Sometimes – 87 (41%)
Rarely – 16 (8%)
Never – 28 (13%)
We don’t celebrate festivals in this way – 12 (6%)

Family wellbeing

Your disabled children’s wellbeing

How would you say your disabled children’s mental health (including stress, anxiety, and depression) has changed over the past 12 months?

Of 360 responses, 58% of families said their disabled children’s mental health has got worse over the past 12 months.

Much worse – 85 (24%)
Somewhat worse – 121 (34%)
Stayed the same – 125 (35%)
Somewhat better – 22 (6%)
Much better – 7 (2%)

How would you say your disabled children’s physical health has changed over the past 12 months?

Of 360 responses, 40% of families said their disabled children’s physical health has got worse over the past 12 months.

Much worse – 56 (16%)
Somewhat worse – 87 (24%)
Stayed the same – 185 (51%)
Somewhat better – 25 (7%)
Much better – 7 (2%)

How would you say your disabled children’s behaviour and emotions have changed over the past 12 months?

Of 360 responses, 65% of families said their disabled children’s behaviour and emotions have got worse over the past 12 months.

Much worse – 100 (28%)
Somewhat worse – 132 (37%)
Stayed the same – 90 (25%)
Somewhat better – 34 (9%)
Much better – 4 (1%)

How would you say your disabled children’s general wellbeing has changed over the past 12 months?

Of 360 responses, 42% of families said their disabled children’s general wellbeing has got worse over the past 12 months.

Much worse – 46 (13%)
Somewhat worse – 106 (29%)
Stayed the same – 167 (46%)
Somewhat better – 31 (9%)
Much better – 10 (3%)

How would you say your disabled children’s development has changed over the past 12 months?

Of 360 responses, 31% of families said their disabled children’s general wellbeing has got worse over the past 12 months.

Much worse – 40 (11%)
Somewhat worse – 72 (20%)
Stayed the same – 170 (47%)
Somewhat better – 62 (17%)
Much better – 16 (4%)

Your non-disabled children’s wellbeing

How would you say your non-disabled children’s mental health (including stress, anxiety, and depression) has changed over the past 12 months?

Of 221 responses, 37% of families said their non-disabled children’s mental health has got worse over the past 12 months.

Much worse – 30 (14%)
Somewhat worse – 50 (23%)
Stayed the same – 118 (53%)
Somewhat better – 14 (6%)
Much better – 9 (4%)

How would you say your non-disabled children’s physical health has changed over the past 12 months?

Of 221 responses, 17% of families said their non-disabled children’s physical health has got worse over the past 12 months.

Much worse – 13 (6%)
Somewhat worse – 25 (11%)
Stayed the same – 148 (67%)
Somewhat better – 22 (10%)
Much better – 13 (6%)

How would you say your non-disabled children’s general wellbeing has changed over the past 12 months?

Of 221 responses, 25% of families said their non-disabled children’s general wellbeing has got worse over the past 12 months.

Much worse – 13 (6%)
Somewhat worse – 41 (19%)
Stayed the same – 129 (58%)
Somewhat better – 24 (11%)
Much better – 14 (6%)

Your wellbeing

Of 359 people:
• Mean SWMWBS score 19.27
• 42% of parent/carers had low wellbeing with a score of less than 19
• 28% of parent/carers showed signs of probable depressions, with scores of less than 18
• The mean UCLA loneliness score 6.75
• 30% of parent/carers showed extremely high loneliness, with a maximum score of 9