Inclusion Ireland / Down Syndrome Ireland Direct Payments Seminar

On 30th May 2016, over 200 people attended a seminar entitled ‘Personal Budgets’ hosted by Inclusion Ireland and Down Syndrome Ireland. It was in the context of the commitment in the new programme for government to set up a task force for Ireland to move forward to give people with disabilities the choice of a personal budget. The new Minister for State with responsibility for Disability was in attendance. At the moment, almost all funding in Ireland goes to traditional services.

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  • Avril Webster was honoured to be asked to talk from the family perspective and to share her son Stephen’s story
  • they are negotiating to achieve a personal budget for Stephen
  • they are finding it very hard
  • this piece was written to be spoken out loud
  • this is her speech in written format.

Good morning all, thank you to Paddy and the team at Inclusion Ireland for organising today’s event and the invitation to speak with you today.

My name is Avril Webster and I am here on behalf of our son Stephen who is 18 and leaving school next month. I am here today to talk about choice.

Let me tell you about our family and Stephen. I am married to Robert and we have three children: Stephen age 18, Michael age 15 and Rachel age 13. We live in Limerick.

Stephen is a fun loving energetic young adult – I am going to let the slides run here as I speak and I hope they give you a sense of who he is and the joy and craic he brings to our lives! Stephen loves to sing and he particularly likes traditional Irish ballads and is a fan of the High Kings.

I also have to tell you that Stephen has a rare chromosomal disorder. He has complex needs, classified at the severe end of intellectual disability and autism. He has sensory and communication difficulties and has significant mental health difficulties.

Stephen is leaving school next month and we know that what will work best for him will be one-to-one support based in his own community from his home. We want to work with the brokerage model the same way Rita’s daughter Helena does.

And we did not just decide this yesterday, we have done a huge amount of work to prepare for this. Stephen is our eldest and I expect to be putting the same energy into supporting and helping Michael and Rachel make decisions for their future.

Actually I want you all to close your eyes for a second. I am sure many of you know someone doing the Leaving Certificate exams next week – maybe a family member, neighbour or friend – imagine if for them we took away choice, if the Department of Education decided where each student would be placed

  • without the input of the student themselves or their family, or
  • without taking into account of the passions or interests of the person.

That they would be given a place with no choice and told that they should feel very lucky to get this place.

What do you think the students about to sit their Leaving Cert would say about that?

Yet this is the very situation – a group of our fellow citizens, school leavers with intellectual disabilities and autism, find themselves with little or no choice.

Going back to my point about starting the process a long time ago…

Five years ago, in 2011 my two best friends Emer and Kathryn and I ran an event in Limerick to learn about this idea of personalised budgets. Over 200 people attended that evening and the former Minister, Kathleen Lynch, opened the event for us. We heard stories that evening from people with disabilities and their families doing that early pioneering work on this in Ireland.

I have been to lots of conferences. I’ve spoken to as many people as I can. I have read reports, books, research. I have done lots of training, including the Genio 4 week training course with Hope Leet Dittmeier, who is one of the world leading experts in how to support people in an individual way. The more I learned, the more I realised this would be a good fit for Stephen.

We also know this works from experience and evidence. Last year we managed to get agreement that Stephen would have home based respite support, instead of residential group-based respite. The difference has been huge. We were at a point where Stephen was so anxious and distressed in the group setting and the days that followed, that despite desperately needing a night’s sleep we could not let him go to residential respite. The small amount of home based support is working really well and we have used it to intentionally start the transition for Stephen’s adult life.

Stephen has started doing ordinary things in ordinary places with support; things like learning to take the local bus into Limerick city. Because he is not in a large group and has gone at the same time every week, the bus driver has got to know him. And one of his neighbours who I would know to see also takes that same bus and now knows Stephen. I am acutely aware that it is important that it is not me that supports Stephen. How many other 18 year olds would like their Mammy with them on the local bus?

As a family we are absolutely committed and have just completed building a self-contained apartment for Stephen within our home. It gives Stephen his own space and place, close to family and in the heart of his community. We also created space to facilitate staff supporting Stephen.

I have been to see the existing traditional day services available in our area and their offered activities for someone like Stephen do not correspond with his interests.

Large group settings do not suit Stephen – from a sensory perspective we know this. And we have lots of clinical and education reports that also say this.

All of this led to discussions with the HSE starting over two years ago, that this model of support would suit Stephen. We are right in the middle of negotiations and it is hard, really hard. I also know that change is hard for all stakeholders, I acknowledge the difficulties on all sides, but it should not be like this.

The hours spent on e-mails, phone calls, meetings, discussions and the stress associated with it – this is time I could be spending planning for Stephen, giving some time to the rest of the family, or actually taking a moment for myself. There is a toll on our family having a young adult like Stephen when you don’t get the right support, but the real toll is the constant battling. This new battle is following on from (or on top of) the battle we have just come through, through the education system and the battle to get some little bit of therapy through children’s disability services.

It must be about what is right for the person, not what has always been there, not about what is easiest for the system or institutions.

We have to be clear about responsibility, about integrity, vulnerability, accountability, trust. This is new, it is not easy, but when it is the right thing to do, we must step up and do it.

I want to be clear that this is not an issue of funding, this is about choice over how the funding is used. Surely it makes sense in the context of the policies outlined in the various reports, e.g. Value for Money & Policy Review of the HSE’s Disability Services, Time to move on from Congregated Settings and New Directions – that people would be given choice over how their new funding is used rather than having to accept ‘the placement’ into traditional services.

I do however want to make it clear that this is not about a cheaper model of service, it is about choice of how it is used. We need to have enough resources that this model is sustainable and workable. It is a new model and there are set up costs.

This model is not about the family doing everything – if it is set up that way it will not work. It cannot be that I run Stephen’s life – I am his overprotective mother! It is about hearing Stephen’s voice and about the balance of family involvement, so Stephen’s life and support is solid in the long run.

Equally in this model, it cannot be that so much is pushed onto the family that it becomes all about the person with the disability. It cannot be that in order for Stephen to have a good life, that I don’t have a life. It is about having the right support for balanced family involvement.

It is right and part of the natural life cycle that all children as they move into adulthood have the choice to move out from home. This should be no different for Stephen, and that independence takes support.

And coming back to my example about life for students without disabilities about to start their Leaving Cert exams, and [the fact] that many will start college in September and discover they are on the wrong course and want to change. Our school leavers with disabilities should also have the flexibility to make mistakes, to discover more about themselves, to be able to progress and move on and not to be locked to the same day service for their whole lives.

[It is important] that like every other 18 year old, Stephen has the choice and the chance to find out more about his passions and interests and build his skills. Despite his complex needs, Stephen has lots to contribute and you know what? We don’t know the half of it yet.

What I know for sure is Stephen’s very presence in our local community is not only an asset but absolutely vital.

I want you to think about the parents today in a hospital getting the news that their baby or young child has a lifelong disability. I want to think about how important it is for those parents to see Stephen doing ordinary things in ordinary places like taking the local bus, as a neighbour, as a friend, as a member of his local gym, working in the local garden centre, supporting his local sports teams.

Imagine for those parents, as they try to makes sense of their new landscape and the world of disability and special needs, that they would have the reassurance to know that their baby, their young child, will grow up to have the same choices and opportunities in life as any other person and be an equally-valued citizen in Ireland.

Minister, I am asking you to please give Stephen and the others who want this option the choice, the chance to do it, to change attitudes and to be that inspiration.

Thanks for listening.

06 - Avril WebsterAvril Webster is the author of the Off We Go! series of books, and an advocate & lobbyist for those with disabilities.

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