The Blog

Abandoned, Without a Voice

I have three children, all of whom have a disability. I would not change my children for the world, but I think there is significant change needed to the system of support to make it easier for parents like me to cope and ensure that they get the right care in the future.

Being a parent of a child with a learning disability was in the news a lot before the election after Samantha Cameron spoke about the tragic death of her son Ivan. Now, against a backdrop of cuts, there is very little that the new Government is suggesting that will make a noticeable difference to the lives of people with a learning disability or their families.

This is not good enough. During the election, the political parties showed they were not afraid to use the voice of disabled people to show how society is unfair. The new Government now needs to make a tangible difference to improve the lives of the most vulnerable. This is not only about money, it is also about how the money is used.

I have three children, all of whom have a disability. I would not change my children for the world, but I think there is significant change needed to the system of support to make it easier for parents like me to cope and ensure that they get the right care in the future.

I may have been naïve when I entered the world of disability but now, 20 years later, I continue to be shocked by my experience of 'the system' that surrounds disability and the negative impact it has had on my children, my husband and myself; physically, emotionally and financially.

When my first child Alister was born I had chosen to give up working for a while in order to have the joy of raising my children. I felt like I was fortunate to be able to do this, but I didn't realise then that I would never return to work because my caring role would take over all my time.

My twin children, Gregory and Georgina, were born two and a quarter years later. At the time, I didn't know my first born was struggling with Asperger Syndrome and, following that, both the twins would be much more severely affected by Autism, learning disability and attending co-morbid conditions.

We only turned to ask for help when Georgina and Gregory were 14. We were at our wits end and knew that we needed support. That is now five years ago. Since then everyday has felt like a fight with the authorities to try and secure the support that my family so desperately needs.

I wade through acres of endless paperwork, never ending meetings and reviews; with the continual threat of what will happen when we, as parents, are no longer around to do this for our children. I need to set things up now so my children get the support they need when we are no longer around.

Local authorities are concerned with budgets not the best interests of the people they support. None of my children received the necessary support from speech and language services that would have given them the building blocks needed to integrate into their local community. By the time they finally got it, well into their teenage years, it was too late.

No-one comes near us as a family unless they are paid to do so. The lack of support we receive from the authorities has pushed my family beyond crisis. My health has deteriorated by the near constant stress I live with and the need to tend to all of my "children's" needs when two of them require 24/7 support and another also needs a lot of assistance. Despite this the local authority-run learning disability services won't even begin to consider helping.

This fight has led me to make a complaint against the social care system here in Sheffield which was on the ombudsman's desk for over a year! I have also complained against both the children's hospital and the local commissioning body. But nothing changes. I have many more complaints that have not been made because I am simply burnt out. There is seemingly no way of holding anyone to account for the fact that my family has been failed by so many people on so many occasions.

These experiences are not unique to my family. These are issues that are experienced by many families who have a child with a learning disability who, on a daily basis, have to look after their children while facing a system that does everything it can to avoid helping.

It shouldn't be this way.

The solutions are varied: better training for care staff; assessments whose focus is on meeting needs in a timely way rather than on underestimating them; 'ring-fenced' health and social care budgets that guard against further cuts in future; and a redressing of the balance of a system that leaves disabled people and their families living in what feels like a war zone. Overseeing all of this must be governance that is concerned with relationships and integrity, not just about economy and personal glory.

It is too easy to deny people who have no voice of their own because they are disabled or they do not have the capacity to understand the power others have over them. They struggle to take part in society. Their gift to us is they challenge each and every one of us to be the best that we can be, not the greediest that we can be. Caring for ourselves is easy. The real challenge is in caring for those who can't care for themselves.

It is important that all people working in this area come together to advocate for those who are least able to stand up for themselves. Through working with organisations like Mencap and raising awareness of this issue I hope that we can create change. Otherwise, families like mine will continue to suffer over the next five years.

From the 15 June - 28 June the learning disability charity Mencap are asking people to celebrate Learning Disability Week 2015 with them. Mencap want to reach out to the general public, newly elected politicians and people in a powerful position to tackle the myths and conceptions about learning disability. If you want more information or to get involved in Learning Disability Week 2015, head here.