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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Respondent’s first

Respondent’s first language. The majority of questionnaires were filled out by respondents whose first language is English. A range of other languages was also reported, with the second most commonly reported language being Irish, as detailed in Table 5.4 Language Table 5.4 - First language of parents n= Percentage English 169 91.8% French 1 0.5% Irish 6 3.3% Latvian 1 0.5% Romanian 1 0.5% Russian 1 0.5% Ukrainian 1 0.5% Missing 4 2.2% Total 184 100% Child’s Diagnosis Parents in 167 cases (90.8%) had received a diagnosis for their child. Eight families (4.3%) indicated that they had not yet received a diagnosis. The responses of these families are included and analysed because a child may clearly have a disability, (and hence their parents were sent the questionnaire by the early services teams) but it may not yet have been possible to identify the specific diagnosis. In nine cases no response was given to the question of whether a diagnosis had been given. Table 5.5 below indicates the types of disability that were present. Respondents in 43 cases specified that their child’s disability fell into more than one of the categories below, and therefore there are more than 184 responses to this question. Parents indicated that their children had diagnoses of disabilities from across the spectrum of physical, sensory, intellectual and multiple disabilities and autistic spectrum disorders. The most commonly reported disability type was ‘Learning or intellectual disability’, which was a feature of the diagnosis of half of the children. Table 5.5 - Type of disability present Type of disability present n= Percentage Physical disability 72 39.1% Sensory disability 38 20.7% Learning or intellectual disability 92 50.0% Multiple disabilities 22 12.0% Autistic Spectrum 15 8.2% Missing 14 7.6% Informing Families Consultation and Research Report Severity of disability Parents were asked if any terms indicating the likely severity of the child’s disability had been used at the time of diagnosis. Again, for some respondents more than one of the terms noted in Table 5.6 had been used and therefore the total count for this question exceeds the total number of respondents. The most frequently noted level of severity, which related to approximately one quarter of disabilities reported, was mild. 87 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Table 5.6 - Severity of disability Severity n= Percentage Mild 47 25.5% Moderate 36 19.6% Severe 34 18.5% Profound 14 7.6% None of these 60 32.6% Other 20 10.9% Missing 13 7.1% Syndrome or disability name 133 families indicated the specific syndrome name or disability with which their child had been diagnosed, and these are listed below in Table 5.7, which was categorised in conjunction with a Consultant Paediatrician and a Consultant Obstetrician/Gynaecologist. Fourteen respondents noted that they had not been given a name for their child’s disability. As indicated earlier, there was a spread of disabilities reported from across physical, intellectual and sensory disabilities, and autistic spectrum disorders. The most commonly reported diagnoses were Down Syndrome (which was the diagnosis for just over a quarter of respondents), Cerebral Palsy, Chromosomal Disorders other than Down Syndrome, Musculo Skeletal, Spina Bifida, and Visual or Hearing Impairments. Table 5.7 - Disability or syndrome name Name of syndrome n= Percentage Albinism 3 1.6% Autistic Spectrum Disorder 3 1.6% Blindness/Vision impaired 3 1.6% Cerebral Palsy 29 15.8% Chromosomal 1 0.5% Chromosomal (non Downs Syndrome) 12 6.5% Cleft lip and/or palate 1 0.5% Deafness/Hearing loss 2 1.1% Down Syndrome 48 26.1% Down Syndrome & Cleft lip and/or palate 1 0.5% Epilepsy 1 0.5% Genetic (non-chromosomal) 1 0.5% Global Developmental Delay 1 0.5% Learning/Intellectual disability 1 0.5% Lissencephally 1 0.5% Motor disability & learning disability 1 0.5% Musculo Skeletal 7 3.8% Neuro cutaneous syndrome 1 0.5% Occular visual impairment 1 0.5% Renal abnormality 1 0.5% Specific language impairment 2 1.1% Spina Bifida 7 3.8% Tuberous Sclerosis 1 0.5% Very rare syndrome 2 1.1% Other 2 1.1% Missing 51 27.7% Total 184 100% 88

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