A fight to be heard

On World Down Syn­drome Day, Kathy Don­aghy looks at the im­por­tance of speech and lan­guage ther­apy for chil­dren and adults with the con­di­tion

Irish Independent - - Living & Features -

If you’ve ever been in a for­eign coun­try and found your­self want­ing to say some­thing but not hav­ing the words, you’ll recog­nise the feel­ing of frus­tra­tion.

This is what it’s of­ten like for peo­ple with Down syn­drome. While many of us take com­mu­ni­ca­tion for granted, imag­ine what it’s like not be­ing able to tell peo­ple your thoughts, feel­ings or opin­ions.

All chil­dren with Down syn­drome will have some dif­fi­cul­ties with speech and lan­guage and ac­cess­ing early, fre­quent speech and lan­guage ther­apy (SLT) is vi­tal to their abil­ity to com­mu­ni­cate.

Ar­ti­cle 19 of the Uni­ver­sal Dec­la­ra­tion on Hu­man Rights says “ev­ery­one has the right to free­dom of opin­ion and ex­pres­sion; this right in­cludes free­dom to hold opin­ions with­out in­ter­fer­ence and to seek, re­ceive and im­part in­for­ma­tion and ideas through any me­dia and re­gard­less of fron­tiers”.

How­ever, this dec­la­ra­tion is fall­ing on deaf ears when it comes to en­sur­ing that all cit­i­zens have this right as a chronic short­age of HSE speech and lan­guage ther­a­pists mean some chil­dren with Down syn­drome are of­ten wait­ing up to 12 months to be seen.

And ac­cord­ing to Down Syn­drome Ire­land, wait­ing for a long time to ac­cess a ther­a­pist means a child is los­ing pre­cious months in terms of lan­guage de­vel­op­ment.

Tak­ing your child for pri­vate ses­sions is ex­pen­sive. While the costs vary in dif­fer­ent parts of the coun­try, in Dublin you can pay up to €100 a ses­sion.

Fidelma Paris from Pros­per­ous, Co Kil­dare, is mum to Is­abella (13), Layla (10) and Heidi (8). Layla has Down syn­drome and her mother says in the early days she had to fight hard to ac­cess ser­vices for her daugh­ter.

Layla at­tends main­stream school — she goes to Scoil na Linbh Íosa with her younger sis­ter — and is do­ing well. But Fidelma says she spent the first years of Layla’s life con­stantly on the phone try­ing to make sure she had ac­cess to all the ser­vices she needed, from phys­io­ther­apy to oc­cu­pa­tional ther­apy. When Layla was born at the Coombe Hos­pi­tal in Dublin, Fidelma re­ceived all her med­i­cal fol­low-up ap­point­ments from car­di­ol­ogy to hear­ing tests.

But it was things like get­ting ac­cess to SLT and oc­cu­pa­tional ther­apy that Fidelma had to work hard to se­cure for her daugh­ter.

“I started look­ing for early in­ter­ven­tion straight away be­cause peo­ple told me the ear­lier the bet­ter when it comes to things like speech,” she says.

The fam­ily got in­volved with the Kil­dare branch of Down Syn­drome Ire­land and ac­cessed pri­vate SLT for Layla. Through its branch net­work, which is run al­most en­tirely by vol­un­teer par­ents, Down Syn­drome Ire­land pro­vide heav­ily dis­counted SLT ses­sions. Other branches help par­ents to meet the cost of pri­vate ther­apy. These par­ents then have to help with lo­cal fundrais­ing ef­forts in order to help fund speech and lan­guage ther­apy which should be avail­able from the HSE.

Fidelma and her hus­band Matt pay around ¤700 a year for SLT for Layla. It’s some­thing they have to bud­get for and Fidelma be­lieves Layla’s speech and read­ing is as good as it is be­cause she was able to ac­cess SLT when she was still just a baby.

She says be­cause Layla’s mus­cle tone is poor, her writ­ing isn’t great and this is some­thing they’re work­ing on.

How­ever, Fidelma knows that not ev­ery fam­ily can af­ford to pay for SLT. And she says what’s of­fered through the HSE is way be­low what chil­dren need. “They might see your child one day a week for six weeks and that’s it for the year. Your child will need an SLT reg­u­larly right up into adult­hood. They need to see an SLT once a week or once a fort­night — there needs to be that con­ti­nu­ity be­cause com­mu­ni­ca­tion im­pacts on ev­ery­thing,” says Fidelma.

Fidelma be­lieves that in an ideal world, ev­ery child with Down syn­drome would have ac­cess to a ded­i­cated team of oc­cu­pa­tional ther­a­pists, phys­io­ther­a­pists and SLTs from birth. She be­lieves her fam­ily was lucky in that they could ac­cess ex­tra help through their lo­cal Down Syn­drome Ire­land branch.

“If you’re wait­ing years for SLT, it’s too long. You can’t get that time back. Com­mu­ni­ca­tion is ev­ery­thing in life,” she says.

De­clan Mur­phy (30), from Water­ford, is an ad­min­is­tra­tor at the Ed­mund Rice Con­fer­ence and Her­itage

If you’re wait­ing years for SLT, it’s too long. You can’t get that time back. Com­mu­ni­ca­tion is ev­ery­thing in life

Cen­tre and he lec­tures speech and lan­guage ther­apy stu­dents at NUI Gal­way. He re­cently co-au­thored a pa­per on com­mu­ni­ca­tion as a hu­man right and talked about the im­por­tance of com­mu­ni­ca­tion as a young man with Down syn­drome.

“I par­tic­u­larly un­der­stand that some peo­ple in so­ci­ety don’t have ex­pe­ri­ence of peo­ple like me.

“It is eas­ier to have con­ver­sa­tions with peo­ple who know me well down through the years and they un­der­stand where I am com­ing from. When I make a smart com­ment or some­thing, they just laugh and I feel more com­fort­able and great hav­ing a laugh with peo­ple that I know,” says De­clan.

“I feel my­self that I am com­fort­able talk­ing to more easy-go­ing peo­ple. It is good for me, big time ac­tu­ally, if peo­ple talk to me slowly. I am par­tic­u­larly clear about that in my mind. Peo­ple who ask ques­tions like ‘how are you?’ ‘how are you do­ing?’ are great for start­ing con­ver­sa­tions. I feel they have an in­ter­est in talk­ing to me. It is about calm peo­ple who take it slow and ex­plain things in con­ver­sa­tion to me.”

Ni­cola Hart, Na­tional Speech and Lan­guage Ad­vi­sor with Down Syn­drome Ire­land, says last year the or­gan­i­sa­tion spent over ¤2m on SLT, with the vast bulk of this money com­ing from funds raised by par­ents. Ni­cola says it’s rec­om­mended there should be two to three ther­a­pists per 100 chil­dren with com­plex needs. But the most re­cent fig­ures show a na­tional av­er­age case load of 162 chil­dren with com­plex needs for each SLT, with some ar­eas at more than 300 chil­dren per SLT.

“If you have a case load that’s man­age­able, you can build up a re­la­tion­ship with the fam­ily and they trust you. If you have a large case load, it’s much more dif­fi­cult to build up that re­la­tion­ship,” says Ni­cola.

“Be­ing able to com­mu­ni­cate is a ba­sic hu­man right. To be able to de­velop your com­mu­ni­ca­tion skills to the best of your abil­ity is a ba­sic hu­man right. Com­mu­ni­ca­tion makes a big dif­fer­ence to how the world per­ceives you. If you have a child who doesn’t say whether they want milk or wa­ter, af­ter a while you stop ask­ing them. That teaches a de­pen­dence on others. The fact that fam­i­lies are putting their hands into their own pock­ets to ac­cess SLT tells us ev­ery­thing.

“Read­ing is of­ten a way into com­mu­ni­ca­tion, but if you don’t learn to read or so­cialise with your peers, you are en­ter­ing a path­way that leads you to a de­pen­dency.

“I think there’s a lot of frus­tra­tion out there. One of the things we get lob­bied about the most is the lack of SLT. Peo­ple don’t re­alise how much progress can be made if the child gets good SLT.”

PHOTO: MICHAEL DON­NELLY

Ex­tra help: Fidelma Paris, seen here with her hus­band Matt, says she has had to work hard to ac­cess ser­vices for her daugh­ter Layla (cen­tre)

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