New research: Parents of disabled children ‘frustrated’ ‘stressed’ and ‘exhausted’ by battle for support

Survey of 1,500 parents of disabled children by disability charity Scope reveals that:
 
Nearly half (47%) of parents of disabled children have been to see their GP due to stress and worry  
Two thirds (69%) of parents with disabled children have had problems accessing local services for their children over the past year
Nearly nine in ten (86%) find it hard to talk about how they are feeling 
Disability charity Scope launches online community  for disabled people and their families

The findings of a new survey of over 1,500 parents with disabled children paint a stark picture of how a lack of available support is taking its toll emotionally: two thirds (69%) of parents with disabled children have had problems accessing the local services for their children over the past year, with eight in ten parents admitting to feeling frustrated (80%), stressed (78%) or exhausted (70%) as a result.

The survey from the disability charity Scope also found that nine in ten (90%) parents are concerned about cuts to local services that they or their family needs.

Shockingly, nearly half (47%) of parents of disabled children have been to see their GP due to stress, with 62% then being prescribed medication, including antidepressants (57%). 

Nearly nine in ten (86%) parents admitted that they find it hard to talk about how they are feeling and ‘bottle up’ difficult emotions, partly because they feel guilty or worried (42%), or because they worry people will judge them (34%). 

Parents responding to the survey admitted that they often feel isolated as a parent of a disabled child - nine in ten (92%) said they feel that parents who don’t have disabled children are unaware of the challenges they face.

Two thirds (67%) of parents felt that emotional support for parents, such as  support groups or counselling services, should be more widely available, and three in five (60%) parents said that talking to other parents with disabled children was an important source of support.

Bringing people together - new online community launched

Scope has launched a new online community where parents of disabled children can share their experiences and get guidance and practical tips from other parents and disabled people on everything from how to access support, to finding the best specialist disability equipment.

The charity hope this new community will also bring together parents of disabled children and disabled people, to help the charity campaign on the issues that matter to them most.

The site will be managed by a team of volunteers and experts, including parents, who will be on-hand to offer guidance and support on specific issues.

Campaigner Heather Harvey has volunteered to be a champion for the site.  Her 13-year-old son Nicholas has severe autism and learning disabilities.  

Heather comments:

“A lot of parents don’t know where to start when they find out their child is disabled.  They don’t know what support is available, what they’re entitled to, or what to do when they can’t access the help they need.

“My son Nicholas was placed in a school that wasn’t right for him.  It got to the stage where he was doing nothing but lying on the floor of the school he was at, screaming, and lashing out because he was so scared. But no-one would listen to me.

“I was so stressed that I lost a lot of weight and got alopecia and my hair fell out.  I saw my GP and he suggested anti-depressants but I didn’t want to take them. 

“I put a post online asking for advice from other parents of disabled children, and a woman called Jane got in touch – she had been in exactly the same situation as me and her child had just got a place in a brilliant school nearby.

“She helped me through how to get Nicholas a place there – it was a battle but we did it and the change in him as been incredible.  

“I like helping other parents now. It’s rewarding to give people hope when you’re able to say, I’ve been there, I’ve done that, and I’ve come out the other end.”

Scope supports parents of disabled children

The parents section of Scope’s new online community builds on the success of the charity’s 21 Face 2 Face parent-led support groups, which support thousands of parents a year by training parents with disabled children to offer emotional and practical support to other parents who are struggling.

The charity also runs a free national helpline, which offers advice and emotional support to disabled people and their families. 

Mum-of-four Amanda Mortensen is the Co-ordinator of Scope’s Face 2 Face group in Brighton. Amanda’s youngest child Livvy has has autism and severe learning disabilities and epilepsy 

Amanda Mortensen comments:

“We simply want to be the best parents we can for our children, but without the right support, life can be an emotional rollercoaster, without the option to get off.

“The lack of available services and the battle we face to get the support we need for our families puts an enormous amount of pressure on parents which can really take its toll.

“Very often people looking in see us as ‘super mums’ or ‘super dads’, who are able to cope with anything. But in reality we are super exhausted and super stressed.

“I remember one mum feeling completely desperate due to her child’s challenging behaviour, but only received respite when her son seriously hurt himself by repeatedly banging his head against the wall.

“It can be hard to talk about how you are feeling and ask for help – we love our families and naturally we want to be positive about our children. 

“So speaking to another parent with a disabled child who truly understands what you’re going through can be a huge relief, whether that’s chatting online or by attending a group.

“Often it’s other parents who can offer the best advice and tips on how to navigate the system, and help you find a way to get the support you need for your child.”

On 1 September a new requirement came into force which means local councils now need to publish a ‘local offer’ of all the services available for disabled children and their families in their area.  

It also means that local councils have to work with parents and young disabled people when they plan and make decisions about which services are needed.

Government reforms

Anna Bird, Head of Research and Public Policy at Scope comments:  

“The impact of not getting the right support is profound and can affect every aspect of family life. 

“We need to see local councils fully commit to providing adequate support for families with disabled children.

“A key part of making that happen will be listening to the views of parents about what is needed, and then planning services accordingly, so that families get the support they need.

“We’d encourage all parents with disabled children to get in touch with their local council to find out more about their ‘local offer’ and how they can help inform it.

“And if you are a parent in need of advice, information, and support please do visit our new online community, or get in touch with Scope through our free helpline.”  Scope online community

Scope’s free helpline: 0808 800 3333 or email

Scope’s services for families

Ends

For more information, case studies and interviews with Scope spokespeople or parents of disabled children please call Claire Monger in the Scope Press & PR team on 020 7619 7200 or email

About the survey

The figures in this press release are based on an online survey of parents of disabled children in the UK, undertaken by Scope between 31 July and 15 August 2014. The survey was disseminated via social media and digital channels, achieving an average of 1,400 responses across the main questions (with an exact range of 1,358 to 1,526). The statistics quoted have been drawn from non-weighted data.

About Scope

Scope works with disabled people, of all ages and their families, across England and Wales. We offer practical, everyday support and deliver campaigns that can change lives. Our vision is a world where disabled people have the same opportunities as everyone else. Together we can create a better society. 

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