I spoke recently at the Inclusion Ireland AGM (18 June 2013), when Siobhán Kane had asked me to talk about how families have influenced me and the importance of supporting each other. Stephen Kealy, Editor of Frontline caught me over coffee and asked me to write up my presentation for Frontline — so here it is!
My name is Avril Webster and I am a parent from Limerick. I have three wonderful kids, Stephen, Michael and Rachel. Our eldest son Stephen, who is fun loving multi-talented fifteen-year-old, also has intellectual disability and autism and so has complex needs.
Over the fifteen years I have been in the world of disability, I can now see that some of the most valuable and practical help I have got has been from other parents, family members and people with disabilities.
In the early years when Stephen was young, I remember thinking therapy was the Be All and End All of trying to ‘fix’ Stephen. But now, looking back and seeing where I am today, I see the importance of connection with others in the same boat as myself- Having a cup of tea together, or perhaps a glass of wine, is a key way for me to get practical tips and information. It is also an essential way of taking care of myself in terms of energy, having a cry and having a laugh with someone who understands. Connecting with others in a similar situation as ourselves is vital for our well being on this marathon run of having a family member with a disability.
And I think it has never been more important than now for us to be together, to get to know each other, to stand together. In many situations our existing support services are in a mess. They do not give us choice, quality or value for money. I was at a recent HSE meeting where an employee referred to day and residential services as ‘warehousing’—warehousing of our loved ones!? The employee was equally horrified by what is going on. We cannot stand by and let this happen. On top of all this, there are big changes coming down the line to us in the disability sector. And to a large extent we the families have been left out of the conversation, while government decides on new strategies and new services.
I believe we must stand together on a number of things:
Firstly, we need to stand together with each other to support each other, to share whatever information we can get and to share stories and experiences.
Secondly, we must find ways to stand together with our community and friends who will support us to show how much we and our family members have to contribute.
Thirdly, we need to stand together to support each other to take care of ourselves as all this change comes at us, because change is difficult and scary. As well as being busy carers and advocates, we now have the insecurity of not knowing what way support services are going to be in the future.
Next, and most importantly, we need to stand together to ask the right questions:
1) How can we bring about an environment where people with disabilities will be actively involved in every facet of life?
2) How can we get better support for our family members at the right price?
3) When really will standards be put in place?
4) When will the right legislation be put in place for our loved ones, so that they are not considered ‘lunatics’, as is the case with existing legislation?
5) When will we put the right educational resources and therapy services in place for children?
6) When will government really give influence to families and people with disabilities on where funding goes?
7) When can we set aside the begging bowl and instead get support underpinned by rights?
Lastly, at this moment, we need to stand together with school leavers and their families. This summer, once again, we have had the disgraceful situation where our 18-year-olds with disabilities do not know what is happening for them in the future. And the fear the families face that they cannot speak up, in case the little bit of a service they might be offered could be taken away.
In our area, the HSE have said they are going to prioritise funding support to school leavers with severe to profound disabilities. There may be no funding left for services for those with mild to moderate needs. We know also there is a danger that existing services for adults in their twenties and thirties may be cut to allow new school leavers in. We must be careful that we get services for everyone and that resentment does not build up between families. Government and the other ‘powers that be’ like to manage or handle individual families, it is much easier to say no to an individual or a family.
I believe the time has come for us to really network together, get to know each other, support each other, and stand together so that we can be a strong and powerful voice that can demand that change really does take place, and that change is led by the grassroots by people with disabilities and their families. We need to move to a situation where government will see that when they say no to a person with a disability, they are saying no to an entire community. When they say ‘no’ to one of us, they are saying ‘no’ to all of us.
We need to connect on all levels – nationally, locally and individually across Ireland. We need to link up the many parent support and disability groups together across Ireland. We need to link with our local communities. What could you do today? Could you lift the phone and organise a coffee with someone in your area? We need to establish relationships so that when we have to raise our voices, we already have that friendship and relationship in place.
As I finish I want to say that I don’t have the answers, but what do I know for sure? I know for sure that we are all concerned about change and worried about more cuts and losing the little bit of support that perhaps we have now. I also know for sure how tired and exhausted we all are from fighting relentlessly to get what help we have. But have no doubt, change is coming. And we must be involved in this change and have influence over what is happening. We must use it as an opportunity to change things for the better.
It is more important than ever to find that little bit of extra energy to come together, to know there is strength in numbers, to know we are not alone, to have that cup of tea together, that phone call, that email, that link through Facebook, whatever it might be—so that we can stand together and our strong voices can be heard.
Together we must step up, take ownership to ask the right questions in the right place and to keep asking those questions.