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"I'm the mother of twins. They're both disabled and have learning disabilities. And they're 40 this year... It's been one long struggle with health and social care. And I think the main thing is not being heard. "
"Things have gradually been going downhill with personal budgets and the understanding of personal budgets, compared to the old system of direct payments... we all know the local authorities have their own internal policies that they follow. And they're not always abiding by the letter of the law. And they...read more
"I'm still, on a daily basis, witnessing how terrible the services are for families...nothing's improved and I find that soul destroying."
"Unless you fight, people don't get the services that they are entitled to on a statutory basis. You know, as I said, the services are there. And the framework is there, but you have to fight to get them. "
"Another thing that could be better. Until very recently, where I live we had no post diagnostic support for adults with autism at all. So you go and get a diagnosis. And that will be that. You get a leaflet."
"My son went away to residential college for three years, which we had to battle tremendously hard to get for him. And I think, you know, what somebody else said about obstacles being put in your way... that was my experience at that stage. It was 'Well, nobody gets residential...read more
"Social care wise, it's working for me at the moment. But they just want to reduce my package and expect me to pay through the nose for it. And so that's driving me insane. "
"As we moved into adult services, life's been difficult for all of us. And during the next few years, there were many failings. One of my big experiences is I've come across a lot of providers who say they can do a job that they can't do. This has had...read more
"[As carers], we don't get recognition or value in terms of what we do on a day-to day basis, when it comes to managing the care package of our loved one. So I think that's another thing that needs to change for me. They need to value, respect...and not necessarily pay us, but certainly...read more
"Maybe you're worried about his teeth. [With] absolutely everything, you have to start from a zero base. So I'll say, 'Well, I think he needs a blood test.' [They say] 'I'll give you a form.' You can't get a blood test anywhere locally. Because it has to be done by a professional person. You can't get...read more
"The main communication we got was our letter about Community Care charges. Rather than a text or a call or a letter saying, 'How are you?' there was no 'How are you?' Or 'Are you?' even. 'Are you alive or dead?' You know, there was no compassion shown. It's very disappointing to...read more
"With health and care, and specialised training in our circumstances, for adults with cerebral palsy that seems to fall into a void. And so we have long distances to travel out of county annually."