Sunday 23 October 2016

They are the voiceless - let's give them their voice

Speech is key to friendship, to love, to independence, to freedom. Let's not deny tens of thousands their voice, writes Brendan O'Connor

Published 22/05/2016 | 02:30

'The last thing these parents and these children need is to be abandoned by the State. They have enough to be coping with'. (Stock photo)
'The last thing these parents and these children need is to be abandoned by the State. They have enough to be coping with'. (Stock photo)

There were a few common threads to the emails I got from parents - overwhelmingly mothers - after I brought up on the Late Late last week the issue of the shocking lack of speech and language therapy in this country. They were glad that someone managed to mention it on TV, however cack-handedly. They were also furious about the lack of services for their loved ones, whether that be a father who has had a stroke and was waiting for some therapy to learn to speak again or children, for whom that early intervention window, that time when children hoover up new things, was running out while they waited sometimes years for therapy.

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Another thread that ran through emails was the fact that these people are too busy surviving and trying to look after their kids or their loved ones to go out and protest, to make noise.

They are, if you like, the opposite of older people. Governments are careful about upsetting old people, cognisant that older people tend to have time on their hands and free travel. Children with disabilities and their families can tend to be invisible, because they have neither the time nor the inclination to take to the streets.

There can be a sense of charity around services for people with disabilities. They are supposed to be grateful for anything they get.

You would imagine that when Ireland ratifies the UN Convention on People with Disabilities - which we signed nine years ago but have yet to ratify - we should move from a charity mindset to a rights-based mindset. But things will not change that quickly.

People with disabilities are still expected to take the crumbs from the table after everyone else has been looked after and they are expected to be grateful for it.

This charity mindset is only becoming worse as the services provided by the State diminish further and more and more fundraising has to be done to give these people what they need and what they should have a right to.

So basically, people with disabilities and their advocates are expected to humiliate themselves by going out with a begging bowl.

Imagine if we expected people on the dole to go out with a begging bowl to get their entitlements, to stand before their friends and neighbours outside the local supermarket, begging for money.

Another common theme to the emails was that if the families of children with disabilities aren't literally out begging, they are fighting with the State for services.

Ask any parent and they will tell you that literally everything is a fight. Imagine if you had to go out begging to get your child an education.

As the State services for people with disabilities continue to decline, there is another phenomenon that you might find odd. Increasingly, the services that are provided are workshops for parents to learn speech therapy, occupational therapy and physiotherapy. Obviously, parents expect to have to do a certain amount of homework with a child who needs extra help. Trust me. It's a major part of life for the whole family.

But this subtle, creeping, pushing back of the responsibility to the parents is getting worse and worse. It's like the difference between you being expected to do homework with your kid in the evening and the school saying to you: "Come in for a day and we will show you how to be a teacher and then we will be washing our hands of your kid and you can educate them at home."

Another thread in the emails was that many parents of children with disabilities have given up work. In reality, it is largely women who give up work. In terms of time and commitment, having a child with a disability, in the absence of services, is almost like having a newborn baby full-time.

I do not mean that these kids are like babies. I mean in terms of the time and the commitment. The next time you moan about having to bring your kids to hockey at the weekend, think of these mothers and fathers. There are often a lot of medical appointments involved, which mean going to hospitals maybe a few times in one week, queueing up, finding someone else to look after other kids. These appointments are obviously not made to fit in with anyone's working day or the rest of the family. They involve indeterminate amounts of time and for people who live down the country, they can involve travelling long distances.

That's before you get whatever bit of services you might be getting, or paying for, yourself. That can involve more travel, more organising of the rest of the family. These might sound like mere inconveniences but they can dominate family life and make holding down any kind of job impossible.

But people do it. They do it because they will do anything to help their kids do a bit better in life. And they do it even though it can lead to their other kids suffering, to stress, to financial problems, to problems in relationships.

And that's just the practical side of it. The background to all that is that they cannot have the same hopes and dreams for our children that most people can have.

We have to accept that they may never live independently or get a job. We have to worry that our kids will become increasingly left out as they get older, that they will be mocked, condescended to.

The last thing these parents and these children need is to be abandoned by the State. They have enough to be coping with.

But none of the emails people sent were moany. These people know that no one wants to listen to a moaner.

And the miraculous thing is that these tiger mums and dads get on with it. When they do moan, it is to each other, to people who understand. In general, they get on with life. They find joy. They love their children. They determinedly work so that their other kids will not be neglected or lack attention.

They work for tolerance and understanding and acceptance for their kids in the community, in school, everywhere. And they try to do it all with a smile on their faces and a determination that this will not ruin their families and their lives. And they try not to dwell on what will happen when they are gone, with the question of who will love their child then.

Many of these parents celebrated when Finian McGrath was made a junior minister with responsibility for their kids and for all people with disabilities. They hope that Finian, himself a parent of a person with a disability, might understand and be a voice for them.

At the end of last year, according to figures obtained by the Irish Times, 15,000 people were waiting to be assessed for speech therapy in this country. Some of them have been waiting up to two years. When they do finally get an assessment, the likelihood is that there will be little or no speech therapy for them anyway. They go onto another waiting list of thousands and can wait for up to two years.

While deeply committed young speech and language therapists who would love to live and work in this country go abroad for work, we have less than half the number of speech therapists we need in this country. In the grand scheme of things, it actually wouldn't cost a fortune to hire some more.

Think of the heartbreak of your child not speaking to you when you know they could, given some help. Imagine if they couldn't tell you where it hurts or why they are crying or how they feel or that they love you. And imagine if you know that this inability to make themselves understood was unnecessary.

Imagine the difference it would make to a young person with a disability, who faces huge challenges in life anyway, to be able to speak and make themselves understood. It is their window on the world, their key to relating to other people, to friendship, to love, to coping in the world, to a modicum of independence, to some small bit of freedom.

And you know, before you feel sympathy for those people, remember that it could be your kid. Your typical child could need help to learn to speak. There are all kinds of reasons for speech delays and problems and all kinds of kids need intervention. And the reality is probably that intervention should be occurring in schools, not a three-hour drive away.

When Finian McGrath is finished fighting for people's right to smoke in public, perhaps he would consider giving these voiceless children a voice. Twenty-five per cent more speech therapists won't do enough to put a dent in the tens of thousands waiting for the fundamental right to speak. Of course there are many priorities in terms of giving people with disabilities their rights. And we should be working on all of them. But the areas of speech and language, OT and physio are three areas that could save the State billions in the long run, if we took that precious window, got to these kids in time, and gave them basic life skills.

Our children will be denied so many of the things that everyone else takes for granted. Why don't we do this one thing for them and give them the right to speak and the dignity that goes with that? Give them their voices.

No doubt many experts and politicians will tell us why this is not possible and I am no expert, but it seems to be to be one good thing, relatively affordable, that we could do to change the lives of ten of thousands of families in this country who have enough challenges, enough sadness and enough to fight for already.

Sunday Independent

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