Disability Advice Project (DAP) was established in 1996 as the dream of its founder, Pauline Jones, whose daughter was born severely disabled. Pauline first became aware of the problems faced by parents of children with disabilities when her daughter Celyn was diagnosed with cerebral palsy. She found there was nowhere to go, not just for emotional support but for everyday advice on benefits, care and respite. To help families in similar situations she founded DAP.
The charity continues to support people with disabilities, their families and carers. Its vision is equality for disabled people, so they have the same chances and opportunities in life as non-disabled people. DAP strives to offer people with disabilities positive experiences and to help them achieve their potential.
Pauline had enjoyed a normal pregnancy and there weren’t any complications when Celyn was born in May 1990. The Jones’s were delighted to welcome home their baby daughter and she quickly settled into family life. However, Pauline had a nagging feeling that something was wrong.
“At Celyn’s six-week check, I told them she wasn’t focusing on me when feeding. I already had my son, Teifion, so I knew something wasn’t right. I was told not to compare children. That they all develop differently,” Pauline says.
At eight-weeks old, Celyn started fitting. Suddenly, there was a huge amount of medical involvement in Celyn’s life. There were lots of medical professionals (12 at one stage). My home was like a goldfish bowl with physiotherapists, occupational therapists, speech and language therapists, to name just a few. But there wasn’t anyone to support me and my husband.
“I wasn’t coping. I went through a horrendous period of blaming myself. I had carried her and constantly questioned what I’d done wrong?”
Right from the Start
Pauline and her husband were told about Celyn’s disabilities in the most brutal way. They had gone to University Hospital Wales to meet a specialist doctor who had the results of Celyn’s MRI scan. She told them, matter-of-factly, that damage at the back of her brain meant she was blind and would never walk or talk. The doctor then sent them on their way, as if nothing had happened.
“We were given the most earth-shattering news in a matter of minutes. We walked out in a daze. We don’t remember driving home. How we didn’t have a car crash, I’ll never know.”
That was when a lifetime of disability campaigning began. Pauline told their consultant paediatrician about their experience. He was disgusted and agreed to help ensure parents were never told about their child’s disability like that again. Pauline worked with the staff in the Children’s Centre at the Royal Glamorgan Hospital to make a parents’ room where parents who had been given a life changing diagnosis could go to gather their thoughts and speak to professionals. The parents’ room was completed in 1992 and Celyn and Pauline were invited to meet Princess Diana at the opening.
Thanks to their campaign, called Right from the Start, there is now a parent’s room in every hospital. If parents are given difficult news about their child, they have somewhere private to go and someone to support them.
“When you have a child, you imagine a future full of opportunity and all the special moments you’ll share. Suddenly, that child is taken away. You have this diagnosis and a child with a vastly different future. It is hard to come to terms with. You go through a grieving process.”
Pauline contacted disability charity, Scope, when Celyn was diagnosed with cerebral palsy. They sent a social worker named Sally. Sally encouraged Pauline to join a parent support group called Friday’s Child.
“I was a confident person, used to attending meetings all over the country for my job at the Design Council. But the thought of walking into a room with my disabled child, where there were other children with disabilities, was like admitting she was different and that our lives would never be the same. I couldn’t do it.”
Sally didn’t give up. After weeks of gentle encouragement, she turned-up on Pauline’s doorstep to take her to the group. That was a turning point.
“When I started to talk to other parents, they were full of practical advice. From free nappies, a toy library service and home visits from a nurse who could teach techniques to encourage Celyn’s development. We could get care for Celyn and some respite for us. And I was entitled to financial support. I could apply for Child Disability Living Allowance and Carers Allowance. This was a huge relief, as I had given up my job to look after Celyn. I had been the main earner and we had taken a massive drop in our income. The best advice I can give to parents who have just learnt their child is disabled is to speak to other parents and support organisations. Sometimes parents need encouragement to take those first steps – to help them find the right support and to make introductions. I am so thankful for Sally,” she says.
Pauline felt passionately that there should be an organisation providing this vital information. With help from Sally, Pauline secured funding to set up a telephone advice line in Newport, South Wales. She has never looked back. The Disability Advice Project is now based in Cwmbran, South Wales, and helps thousands of disabled people every year.
DAP relies heavily on volunteers to provide its services. Pauline is particularly proud of the accreditations they’ve achieved in the past. DAP was the first volunteer organisation, without paid staff, to achieve Investors in People in 2001 and has maintained it ever since. It was one of the first volunteer organisations to achieve the Community Legal Service Quality Mark. It has also achieved the Wales Training Award and the National Training Award.
“These awards aren’t easy to win. We don’t have huge training budgets; we’ve won them because of how much we develop our people. Our volunteers can go from having no experience to representing clients at tribunals. Our awards prove we are providing a quality service of a national standard, giving reassurance to our funders and clients, but most importantly recognition to our volunteers.”
DAP’s volunteers are disabled or have caring responsibilities. They have first-hand knowledge of how complex the welfare system can be and help clients to appeal wrongful decisions. Many disabled people live in poverty and are unable to afford essentials. DAP volunteers know just how vital their work is.
“Since founding the charity my role has included everything from managing the project, casework to bucket collections. The most important part of my job is helping people. I feel very privileged to say that I have enjoyed every single moment of my time at DAP. It has been wonderful to see our volunteers’ progress. We have had some major wins in our fight against discrimination winning numerous court cases and even bring about changes in the law.”
Homes Fit for Children
DAP supported the Homes Fit for Children campaign. This changed how grants are given to families with disabled children. Parent’s income used to be considered when they applied for Disabled Facilities Grants. This left many families unable to afford to adapt their homes.
“I knew parents who were carrying their teenage children up and down the stairs, every day. They couldn’t afford to contribute. We campaigned and we got the law changed. Now parents are not means tested for grants. This was life changing for many families.”
A major part of Pauline’s role is to continuously find funding.
“As a charity you are always applying for funding. It’s incredibly frustrating when a project must end, especially when you have to let people go or stop a successful service. We’ve had times when we’ve had no money and no offices. Once we couldn’t afford premises. All our office furniture was stored in our volunteer Alan Thomas’s front room. We wouldn’t be defeated. We continued with the good will and generosity of volunteers. We had most of Alan’s extended family helping us. He never minded that we had taken over his home. The most important thing in an organisation is its people. DAP is still here because of our volunteers hard work.”
A fair chance
“We want to create more opportunities for people with disabilities. Decent workplace experiences are hard to come by but are so important, as they give people confidence and a chance to learn skills, so they can find paid employment. Lots of disabled people are needlessly unemployed.
“Employers need to focus on what a person is good at instead of what they can’t do. When we took on Amy, as a volunteer, she really lacked confidence and was so quiet and timid. She’d been trying to get into volunteering, but nobody would take her on. She’s such a different person now. She’s grown so much and is a brilliant support for the office. We were delighted to be able to take her on as a paid employee.”
DAP was one of the first charities in Wales to get a website thanks to volunteer Steve Evans.
“Nobody would take Steve on because of his disabilities, which is such a waste. He is so talented. He created our website from scratch as we couldn’t afford to buy one.”
DAP continues to strive for equality so disabled people have the same chances and opportunities in life as non-disabled people.
When the Disability Discrimination Act came into being in 1995, Pauline found there were no organisations supporting disabled people to challenge inaccessibility or to provide information to businesses on their legal duty under the act. As a result, she applied for funding for the Royal Institute of British Architects to train her and DAP’s volunteers to provide an access auditing service. The service became so busy that DAP was then successful in applying for a National Lottery grant to fund the employment of chartered surveyor, Tony Crowhurst, and two access auditors.
Pauline felt it was important to engage children in assessing the accessibility of the everyday facilities they used and so went into schools to deliver equality training.
“The children were so engaged it was incredible. When they realised all the things you can’t do if you’re visually impaired, a wheelchair user, hard of hearing or sensitive to noise and lights, they were determined to find solutions. They would report access problems at youth clubs, cinemas and leisure centres. If they can be proactive, why can’t we?
Unfortunately, that project ended. Tony still volunteers as an access officer at DAP and Pauline is hopeful that they will find funding to work with schools again.
“We have to get young people on board because they’re tomorrow’s decision makers. I see it with Celyn. The children she grew up with are so accepting and always take time to say hello and help her. Children who don’t know her, stare and don’t know what to do or say. As a society, if we were kinder, more patient and more flexible, equality could be achievable. We would all live better, more fulfilling lives. Attitudes are changing but we have a long way to go.”