Our COunting the COsts 2014 survey fOund. Families with disabled ... Join the campaign at ... half rent or live in socia
Counting the Costs 2014 Research into the finances of more than 3,500 families with disabled children across the UK
Our Counting the Costs 2014 survey found
Families with disabled children are going without the basics Some are going without food and heating more than once a month. Some children are even going without specialist equipment, therapies and hospital appointments.
This isn’t something new, but it’s getting worse The number of families going without food has doubled in the last two years. Nearly a third of families with disabled children are going without heating. The impact for many is debt, stress and ill health and for some, marriage breakdown.
Based on what families are telling us, Contact a Family has launched the Counting the Costs Campaign
government
energy companies Offer discounts to households with a disabled child
Ensure the benefits and tax system adequately reflects the extra costs and barriers to work families with disabled children face
families
Seek advice on finances and benefits from Contact a Family
Together, we can change this. Join the campaign at www.cafamily.org.uk/takeaction
About the survey The first Counting the Costs survey was carried out in 2008 because we wanted to find out how families with disabled children across the UK were affected by the economic downturn. We have repeated this survey every two years.
Meet the families
behind the survey
About the families who filled in the survey A quarter have more than one disabled child Half say they or their partner has a disability or health condition 28% are lone parents 66% of households have someone in paid employment A third earn less than £15,000 per year 68% have no pension Half rent or live in social housing.
Chantal & Harry Chantal lives in Suffolk. Her son Harry is twelve years old. Harry has severe brain damage, no immunity and very complex epilepsy which means he has up to 12 seizures a day.
survey results
Going without
83%
of families with disabled children Say they are going without
I go without food on a daily basis. I make a £30 shop last two weeks. If there is no money left for electricity then there’s no electricity.
In winter having little or no heating makes Yasmin’s muscle spasms worse, which is extremely painful for her.
The number of families going without food and heating has doubled:
31% going
without FOOD
16.5%
2012
14%
2010
33% going without heating
21.5%
2012
16%
2008
And a third of those going without food and heating are doing so more than once a month
I haven’t worn makeup in years, I only get clothes for work if something falls apart, including shoes. I feel ashamed.
The impact of going without their child’s 22% say health has worsened
Going without everyday essentials
49%
say they have suffered ill health as a result days out or leisure time 84%
clothes 65%
It feels like I’m constantly robbing Peter to pay Paul to pay off immediate bills.
car/fuel 40%
specialist equipment, therapies and hospital visits 36%
Cole has a lot of hospital appointments. Petrol costs, together with hospital parking are a nightmare for me.
13%
say their marriage or relationship has broken down
56% say they have argued with their partner or children
Not being able to get out because we simply can’t afford it definitely exacerbates Katie’s condition.
Meet the families
behind the survey On e of the sid e ef fe ct s of Aa ro n’s me dic ati on is ex tre me we igh t-lo ss, wh ich me an s
ke ep ing him wa rm wh en he ’s at ho me is es se nti al. He ati ng the ho us e is
so ex pe nsi ve so I’ll on ly pu t the he ati ng on wh en Aa ro n is ho me in orde r to re du ce he ati ng co sts .
Karen & Aaron Karen Jones from Flint in Wales is a full time carer to her son, Aaron, who is ten years old and has severe ADHD.
Debt
36%
loan out a n e k 2 a 01 have t 7% si nce 2 UP
In the last 12 months, half say they have fallen behind with payments — 65% on energy or utility bills
We’re £2,000 in debt and I have taken out over 10 loans - some from loan sharks - in order to pay for essentials and to pay off other loans.
36%
51 14% have taken out five or more loans in the last year
needed a loan to pay for food
50% say they needed a loan to pay off other loans/bills
%
need a loan for heating
41%
t hr e at e n e d
w it h
co urt ac t io n n o n -pay m e n fo r t o f b il ls
U P 10 % si n ce 20 12
The majority of these have been for council tax bills and 38% for energy or utility bills
I have just had to sell loads of stuff in the house to get the money needed for essential winter coats for the boys. I have taken out about five loans just so I can pay for essentials - general living expenses - nothing special.
Impact of getting into debt and falling behind with payments
64%
Say they have suffered ill health as a result
7%
Have had to use a food bank
Types of loan
bank loan 38%
pay day loan 29%
No one ever thinks they will have to visit a food bank but you just never know.
DWP budgeting loan 22%
Family/friends 45%
Friends and family tell me I must look after myself so I can look after the girls but I’m struggling to keep my head above water some months.
35%
93%
have been forced to sell or pawn something
say they feel anxious and stressed
Trying to keep my head above water financially affects the whole family. I have separated from the boys’ father and have been diagnosed with depression.
Extra costs It costs three times more to raise a disabled child* More than a quarter of families in the survey have £300 or more extra costs relating to their child’s disability or health condition every month. Families with disabled children have to buy things other families don’t – special food, clothing or equipment, and adapting their car or home. They also have to use and replace household goods more often.
The top 3 extra costs
1 Higher heating
I suffer from chronic depression and care for my ill mum too. Even if I could go back to work it would be financially impossible to find affordable and appropriate childcare for Aaron. It just doesn’t exist.
Extra barriers to work
and utility bills
2 Additional
transport and childcare costs
88%
have caring responsibilities that mean they are unable to work as much as they would like
3 More Cole goes through a lot of bedding and clothes which he chews.
frequent washing and replacing household goods, clothes, toys.
*Joseph Rowntree Foundation 1998
72%
are cutting back on work or giving up on careers because of childcare problems
Benefit changes
fam
33%
say they are worse off as a result of benefit changes
46%
of whom are worse off by £30 per week – or £1,560 per year
Looking ahead
61%
say they are confused about how future benefit changes will affect them
Rachael gets Disability Living Allowance but I am very worried about what will happen when she turns 16 and this is replaced by Personal Independence Payment.
ilie
s’ o
utl ook
econo m
y
2008 2010 2012 2014
In 2008, at the start of the economic downturn almost half (47%) of families with disabled children envisaged their financial situation worsening in the next 12 months. In 2014, this figure has risen to nearly two thirds (60%). They feel they are facing an increasingly precarious financial future.
A lot more should be done to enable carers to work, like access to suitable childcare.
Meet the families
behind the survey
We’d like to thank all the families quoted in this booklet Kirsty from South Lanarkshire. Kirsty has four children. Her two boys aged 14 and 15 have autism. Claire from Sheffield. Yasmin is eight years old and has a motor neurone condition similar to cerebral palsy. Yasmin also has a twin sister. Laura from Suffolk. Laura’s son Ellis is six years old and has Asperger syndrome. Ellis also has a 13 year old brother. Marina from Rochdale. Marina cares for her partner who is disabled. Her oldest son Jordan is 14 and was diagnosed with the extremely rare Dandy-Walker syndrome last year. Melissa from Wigan. Melissa’s daughter is 14 years old and has autism. Marie from Yorkshire. Marie’s daughter Katie is 15 and has autism and is profoundly deaf. She also has an 18 year old son who has autism and is profoundly deaf, who lives in full time residential care. Lesley from London. Lesley’s daughter Kirsten is 17 and has Asperger syndrome, Tourette syndrome, depression, dysthymia and ADHD.
Ellen & Cole Ellen is from Belfast. Her son Cole is six years old and has global developmental delay, low muscle tone, epilepsy and cannot speak.
Lisa from London. Lisa’s son Joseph is aged 4 and has autism. Cary from Plymouth. Cary’s son Rohan is 17 years old and has Asperger syndrome.
And a huge thank you to everyone who completed the Counting the Costs 2014 survey.
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1
Introduce a fixed monthly discount on all energy tariffs for households with a disabled child
2
3
Include disabled children in their eligibility criteria for the Warm Home Discount Scheme
Help set up a network of consumer champions to support families with disabled children who struggle to switch to more economical tariffs.
1
Contact a Family is calling on the UK Government to
Increase the Carer’s Allowance earnings threshold in line with any future increases in the national minimum wage, and work towards paying Carer’s Allowance to those earning up to £10,000 a year (the rate everyone starts paying income tax)
2
3
Increase help towards childcare costs for disabled children via tax credits, the tax-free scheme and Universal Credit, so they do not lose out by having higher childcare costs
Widen the criteria for the higher child disability element in Universal Credit to include children on the middle rate of DLA care component and those on the high rate for mobility.
Stop disabled
children going
without the basics Take action Join the campaign at www.cafamily.org.uk/takeaction Donate £5 will help us give two families life-changing advice www.cafamily.org.uk/donate Call for advice 0808 808 3555
Whatever the condition, whenever you need us, wherever you live. Registered Charity Number: 284912 Charity registered in Scotland No. SC039169. © Contact a Family, November 2014 Design www.johnclarksondesign.co.uk
