Wednesday 21 February 2018

My little girl is a person, not a virtual PPS number

Having read Brendan O'Connor's article on giving children with disabilities their voice, Dublin father Dave Lawlor was compelled to write this letter about his daughter Grace, who cannot speak

FAMILY: Dave Lawlor with his wife Debbie Corr and daughter, Grace. Photo: Tony Gavin.
FAMILY: Dave Lawlor with his wife Debbie Corr and daughter, Grace. Photo: Tony Gavin.

Dave Lawlor

Our daughter Grace is a gorgeous eight-year-old girl who lights up a room when she enters. Grace is active, inquisitive and funny and cares about her family and friends. She has a rare genetic condition resulting in physical and intellectual disabilities. Grace fell last year and broke two bones in her arm. We didn't know this because she continued trying to find her ball and then started playing. We didn't know her arm was broken because the genetic condition she has can result in a significant pain threshold. I can still see the shocked and incredulous faces of the excellent doctors, who had watched her play, when they viewed the X-ray images. We didn't know her arm was broken because Grace can't speak.

Grace attends St Michael's House, a super organisation providing schooling and other services to individuals with disabilities in many areas. However, St Michael's House is being screwed financially by the HSE. Even now, as a young child, Grace and others like her are not seen as people but as virtual PPS numbers with associated budgets to be manipulated at will. Budgets have been slashed in recent years to the point where the delivery of speech and language and other therapies is severely restricted.

Therapists, SNAs and teaching staff are excellent and do what they can to ensure their charges progress to the best of their abilities. However, open positions are left unfilled, therapists struggle with a lack of resources and parents are, as Brendan rightly pointed out, being asked to become front-line speech and language therapists due to the void created by budget decisions.

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