Nourish Children Week - Children with Special Needs

Nourish Children Week is vital for children with special needs as they, like their peers, deserve the best advice and input from an early age so as to maximise their potential. If a child is well nourished it improves their ability to grow and gain weight, fight infection, prevent pressure sores if they are immobile, and attend school. A child with special needs who is a healthy weight is able to maintain their mobility, self -esteem and participate to their fullest potential in all activities. Overall, it decreases family stress as feeding, nutrition and under/ or overweight is highly emotive issue for parents. Parents of children with special needs can be vulnerable to nutritional advice that is inappropriate or baseless in clinical evidence, and it is vital for parents to be able to access the correct nutrition information that they require at each stage of childhood development.

A child with special needs has a greater chance than their peers of becoming overweight or obese and Dietetic input from an early age is vital to monitor weight and prevent excess gain. Overweight or obesity has additional impact to just appearance; equipment such as wheelchairs, hoist slings, splints is highly expensive yet becomes useless if it is no longer fit for purpose when it no longer fits the child. Where a child has a very limited diet who only accepts a small range of foods  e.g. in the case of autism, this is highly stressful for parents and they need a high level of dietetic support to ensure their child does not become malnourished. Children with physical disability often require orthopaedic surgery and a well -nourished child will recover faster than a malnourished underweight child- this is especially true in the case of wound healing.

Feeding eating drinking and swallowing (FEDS) difficulties are common, and require specialist multidisciplinary management including Dietetics to help meet nutritional needs. This can include gastrostomy or tube feeding where appropriate. This is best demonstrated by a 'Feeding' or FEDS Clinic which brings the relevant professionals together at the one appointment (typically Consultant Paediatrician, Dysphagia trained Speech & Language Therapist, Occupational Therapist and Dietitian). FEDS Clinics are an excellent example of interdisciplinary working as the family attends just one appointment but receives the comprehensive information they need from several therapists in one sitting. Providing this service requires specialist training, and so these clinics have suffered greatly with non-replacement of staff with two such teams having disbanded in as many months.

However a recent audit by Dietitians who work in the area of Disability Services found that there are large geographical areas in which there is no Dietetic service for the Early Intervention Team, School Aged Team or Special School. As the Dietitian is not a core member of the Primary Care Team parents cannot access even preliminary nutrition advice and monitoring through Primary Care services. Where these children have been admitted to hospital and require Dietetic follow up there is no local service to discharge back to.

Ideally parents should be able to access a Dietitian who has specialist training in the dietetic needs of a child with special needs through their local team and services but this is frequently not the case. Since 2008, the annual National Intellectual Disability Database (NIDD) report has highlighted repeatedly the ‘shortfall in nutritionist services as the only therapeutic input where the demand for new service exceeds service provision’.

In general where there are no specific dietary or FEDS guidelines, parents should focus on age appropriate foods and portion sizes. For further information and for factsheets on diet and autism and diet and Down Syndrome, see www.www.indi.ie Fact Sheets section.

For parents who wish to access a Dietitian for advice for their child with special needs, they should request a referral in a number of ways:

-       through their Consultant Paediatrician

-       from their Disability Service Provider or Early Intervention Team, School Aged Team, or Special School

-       request a referral to a Primary Care Dietitian through their GP

-       request an assessment by a Dietitian through the Assessment of Need application

-       request access to a Dietitian if they choose to be recorded on the Health Research Board National Intellectual Disability Database or the National Physical and Sensory Disability Database.