ENOUGH IS ENOUGH!

Avril Webster asks why accessing respite services for parents caring for children with disabilities should be so difficult.

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Why is there no joined up thinking in our government policy when it comes to disability services? There have been countless reports, most recently Progressing children’s disability services, New directions: Personal support services for adults with disabilities, Time to move on from congregated settings & Report of disability policy review . All of these reports talk about the importance of building ‘capacity’ within families. We also know that the best place for most people to live is with their families and communities.

Yet, Carl O’Brien reported in The Irish Times on Monday 4 June that the Irish government are looking at withdrawing funding from service providers for the provision of respite for families. Apparently they are looking at families using an existing grant called the Respite Care Grant to go out and fund respite services themselves. I don’t know how much the government pay the service providers for the existing respite service our family receives, but I would guess that it is at least 10 times the cost of the Respite Care Grant.

So, yet again, the disability community is looking at cuts way above any other area of government spending. Respite is a vital, I mean really vital, service for families. Without it many will not be able to cope and the end result will be the ‘decapacitising’ (the taking away of capacity) from families.

This is also very short sighted of the government because in the long run not providing sufficient respite will actually cost more than providing it in the first place. As well as the economic cost where an adult or child with a disability has to be put into emergency care because their family can no longer cope, what about the cost to that individual and their family in terms of the emotional well being and quality of life?

I am a parent to 3 children. Stephen is my eldest, he is a fun-loving happy 14 year old. He is a great singer and loves to walk and swim. Stephen also has autism, intellectual disability and physical and sensory issues.

He needs a lot of support with personal care needs, feeding and toileting. He also does not sleep much. He has that lovely label of ‘challenging behaviour’. We get two/three nights respite per month and it is essential for our family life and survival. We use this time to sleep, to spend time with our other children and to take a break so that we can cope with the various extra challenges. Yes, taking care of Stephen is hard and it requires more skills and patience than what you might call ‘normal’ parenting. However, the ‘system’, and the bewilderment of trying to navigate your way around it, is what makes life even more difficult.

I am all for reform, choice and looking to see can we get an improved service at a lower cost. But if the government’s idea of ‘individualisation’ is to completely withdraw existing funding and services for respite, then they need to think again. Even if I was given sufficient funds for the respite our family needs, I wouldn’t know where to start looking for a service, as there are no structures in place to support families in making this choice. We need to pilot individualised funding options and provide training for families and not just ‘land them’ in an unknown situation.

The last bit of my rant is this idea of ‘kite flying’ where the government leaks speculative information that causes families like us no end of worry. This is another cut to services coming on top of cuts in education, therapy services, no funding for school leavers this year etc. etc. It gets harder and harder to stomach when we read that the Value for Money report due to be published in the next few weeks will show the salaries for people working in the disability sector are almost twice the sums earned in other countries. The government has agreed that public-sector salaries are off limits, tied up in the Croke Park agreement, public sector salaries are frozen …

Something has to give, government cannot keep chopping the services to people with disabilities and their families. This is a question of fairness, of social justice, of equality, of basic morality. Government are hell-bent on protecting the salaries of civil servants and service providers. But who is protecting the people with disabilities and their families? Is that not where government responsibility should be focused?

We all accept the economy is in a very poor state, but people with disabilities and their families have taken more than our fair share, it is time to say enough is enough. We all have to work together to safeguard and improve services where everyone shares in the reductions and it is not just taken out of frontline services. And as I said earlier, if the government removes respite services, in the long run it will cost more in every way. More worn out and exhausted families will be pushed into the situation where they cannot cope and will have to hand over their loved ones to the state to care for them full time. We simply cannot let this happen.

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