JULIANNE HAS NOT been seen by a HSE speech and language therapist in 18 months.

In the last year we have received correspondence from the HSE telling us of upcoming group SLT programmes that they think may suit Julianne’s needs, however they have not met her in 18 months, and have not done an assessment.

It’s up to us as to whether we think this programme is suitable for her needs. We should not have to assess our own child.

On one such programme they were focusing on vocabulary which Julianne is actually excelling at. However her clarity of speech is poor, but I have been told that this is something they are not covering presently but they will cover in future programmes.

Delayed access

Julianne’s HSE speech therapist has been a vacant position for over a year. In January last this position was filled however we were advised that she would be unable to get an appointment until April.

This delay is no doubt due to the volume of cases the speech therapists are assigned and hence why they have to offer group sessions rather one to one sessions. We also have to take her out of school to attend these programmes. So we have to be sure that they are beneficial.

Julianne has come on so much since starting school, we feel that this is a really important time now while she is learning to read and write and that the opportunity to reach her full potential is being lost.

We avail of subsidised speech and language therapy from Down Syndrome Ireland Kildare branch.

Fundraising

Along with other parents, we help organise a table quiz every year to raise fund for the branch to avail of the services. The table quiz raises approximately €15,000 ,which covers the cost of SLT services for 6 children.

In order to cover the costs, parents have to also pay €720 to access fortnightly subsidised SLT through the branch. Private SLT services costs €100 a session. If you went twice a month – it would cost €2,400 for SLT alone.

The state is forgetting about my child

Julianne is in senior infants of a mainstream school: St Mary’s Junior school in Blessington, Co Wicklow. Without Down’s Syndrome Ireland’s SLT services in Kildare, I really don’t know what I would do.

It sometimes feels that because Julianne has Down’s syndrome, she’s pegged into a hole that she’s not going to succeed. It feels like the state is telling my daughter that she can’t succeed in life, simply because she has Down syndrome.

Imagine what that feels like – that your child is forgotten and not even worth bothering about?

Cutbacks to services

Julianne initially had to wait almost 12 months to be given a place in the HSE’s early services. Then the services she received were great she was given monthly speech therapy and physiotherapy when required.

But in April 2014, just prior to her starting school, the services in Kildare and West Wicklow were amalgamated and then geographically reassigned. Since then the service is very poor in comparison.

There seems to be not enough therapists to cover all the caseloads in the catchment area. We were lucky to get the services when we did there as are many parents countrywide struggling to get services.

We just want her to reach her potential

Julianne is a really bright little girl who surprises us all the time in her abilities. She has benefitted hugely from speech therapy. It has helped us identify patterns in her speech difficulties which helps us target different areas.

She used so say “nana,” but now says banana. Dog was “gog” and duck was “guck”. We’re working on her cousin’s name Isobelle.  There were certain words that sounded the same initially, for example “Daddy” and “party”. Now we can tell them apart and one of the first words she mastered was her favourite treat: cake.

We just want her to have every opportunity to reach her full potential to live a happy and independent life where her voice can be heard and understood.

Deirdre McNamara lives in Blessington Co Wicklow and uses Down’s Syndrome Ireland Speech and language therapy services in its Kildare branch. Her husband is Jim Haide and they have two daughters, Julianne who is 7 and Elsie who is 10 months. Tomorrow is the 10th anniversary of the Irish Government signing the UN Convention on the Rights of Persons with Disabilities (UNCRPD). A Disability Rights Protest will take place on March 30th calling on the Irish government to ratify the CRPD and make equality the policy.

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