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Irish Social Policy Association 2004 SICK CHILDREN, FINANCIAL STRESS

Irish Social Policy Association 2004 SICK CHILDREN, FINANCIAL STRESS. Eithne Fitzgerald National Disability Authority. Cost of Disability. May add a quarter to cost of living Varies with severity of disability International studies €40 a week minimum at high disability

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Irish Social Policy Association 2004 SICK CHILDREN, FINANCIAL STRESS

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  1. Irish Social Policy Association 2004SICK CHILDREN, FINANCIAL STRESS Eithne Fitzgerald National Disability Authority

  2. Cost of Disability • May add a quarter to cost of living • Varies with severity of disability • International studies €40 a week minimum at high disability • Cost of Disability Payment recommended • €168m. a year

  3. Research on cost of hospitalisation • 4 hospitals • Crumlin • Temple St. • Cork UH • Sligo • 110 parents • Travel, overnights, meals, childcare, treats

  4. Key findings • Average cost €80 a day • Parents under financial strain when • Child in hospital more than once or • Child a long-stay patient or • Parents on low income

  5. Average daily costs • Meals away from home €20 • Travel costs €17.50 • Extra housekeeping €12 • Other extras €30 e.g.childcare, treats, laundry, phone • Total costs €80

  6. Travel costs • Distances to specialist centres • 30% came over 100 miles • Car parking averaged up to €12 a day

  7. Overnight stays • Most mothers stayed overnight • Dads at weekends • Mainly slept in ward • Hospital accommodation €6-€12 a night • But mother of long-stay child could spend up to €1,000 on overnights alone

  8. Loss of income • 60% of parents lost income • Average €500

  9. Financial strain • 60% of repeat hospitalisations led to financial strain and/or debt • Almost all low-income parents under financial strain • Half of higher income parents under strain • Financial strain in most cases meant borrowing/debt

  10. Gaps in support • Little help towards extra expense • Little info. on rights • Anomalies, long-term illness scheme • Most help is means-tested • Only 5 got help from CWO • Only 5 applied for tax relief • Child’s illness enough worry, without added financial troubles

  11. Recommendations • Financial help for long stays/repeat stays • Free parking • Suggested 17c a mile, and up to €40 a day • Clear rules of entitlement • No means test unless exceptional incomes • CWO service in children’s units • Medical cards for all children on DCA • Cost of scheme about €4m

  12. The last word “When you go to try and get help, they (social welfare) make it so difficult and they make you feel like you are begging. Most times I feel like crying after asking them. We don’t like being in this situation but we are only trying to help our children. Not so many forms and questions and delays all the time” Parent of a child under two with multiple disabilities who has had 12 hospital stays totalling 15 weeks in the previous year “There shouldn’t be any need for money worries when you are worrying about your baby” Parent whose child has spent 11 weeks in hospital

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