Dysphagia, swallowing difficulties, and nutrition support needs in Brisbane region

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Omission of dietitian services or nutrition support products from NDIS Plans A summary of cases reported from Brisbane and a regional area of Queensland – June 2019

Pseudonym   Age      Living situation    Disability             Functional impairment which     Dietitian     Hours in      Requirement for      Other

(years)                                        impacts on food and nutrition   hours       NDIS plan      nutrition support    comment

requested product

Ruth                        Lives in small       Cerebral palsy,       No swallow, high risk vomiting      Requested    No hours       Requires continuous

group home         intellectual disability,   and dumping syndrome, requires   14 hours                 pump feeding to meet

epilepsy              tube feeding to meet all nutrition                                                all nutrition

requirements into small bowel requirements Brisbane Sensitive to dehydration

John                     Brisbane           Cerebral palsy,         Unable to swallow safely, risk of    Requested 6  No Hours      100% nutrition

quadriplegia,         dumping syndrome                hours                        through PEG, bolus

epilepsy, contractures through syringe and non-verbal communication

Drew                     Small group        Genetic mutation      Unable to chew, no safe swallow    Requested 5  No hours      100% nutrition

home                resulting in loss of                                       hours                        through PEG, gravity

Brisbane          motor abilities,                                                                           feeding

wheelchair bound

Beau                    Supported           Intellectual and        Needs full support for meal        Requested 5  No hours

accommodation     physical disability,      preparation and feeding           hours

epilepsy History chronic constipation, Brisbane unintended weight loss, sporadic food refusal and risk of nutrient deficiency Continuous movement of upper body increases energy requirement

Graham                  Brisbane          Down’s syndrome       Dysphagia, requires texture         Planner      No hours       Thickened fluids

modified diet and thickened        denied                          Nutrition supplements

fluids. Reliant on care team.          dietetics                          in addition to meals

History unplanned weight loss. Periods of food refusal

Trevor                  Supported group    Intellectual             Dysphagia, difficult to eat volume   Needs      No hours                                 Previously

home             impairment, anxiety,    of food to maintain weight            dietitian to                                        funded under

Brisbane           autism                                                                     visit home.                                        Queensland

Planner Community Care

denied Services, dietetics including

dietitian services in the home

Steven        7         Brisbane           Acquired brain injury,   Dysphagia, weak swallow, cannot   Needs      No hours       Feeding tube in place     Dietitian

non-verbal             eat enough orally to maintain        regular                                                    services in the

weight.                          review of                                  home six years

Poor neurological function related   tube feed                                         funded under

to ABI so experiences Queensland constipation, diarrhoea, bloating, Community Care reflux. vomiting. Services Disability causes high muscle tone which increases energy requirement and makes it difficult to achieve satisfactory body weight.

Maisie        10         Lives with family    Autism,                  Significant food aversions                                         Requires nutrition       Family cannot

in regional QLD     developmental delay                                                                   support product orally   afford to buy

to grow but told supplement. nutrition support NDIS plan has product cannot be $1000s which included in NDIS plan can’t be used because service unavailable in the region