Table 2 Domains addressed in the final COII
Item No. | Domain | Description | Cost category | ||
|---|---|---|---|---|---|
Direct medical | Direct non-medical | Indirecta | |||
1. | Education | Monetary and time resources used in providing the child with educational services from private and public providers. | ✓ | ✓ | |
2. | Childcare | Monetary and time resources used by the caregivers to care for children whilst they undertake other personal and professional commitments. | ✓ | ||
3. | Outpatient contacts | Monetary and time resources used by caregivers to access various healthcare and rehabilitative services for the child’s autism in a hospital setting. Monetary expenses in terms of consultation fees, travel and food. Time expenses in terms of travel, waiting and time spent with service providers for each consultation. | ✓ | ✓ | ✓ |
4. | Inpatient contacts | Monetary costs incurred by for hospital admissions (overnight stays), including any associated investigations, medications, etc. The time commitment is also captured broadly based on number of nights accompanied by a caregiver. | ✓ | ✓ | |
5. | Relocation | Monetary costs incurred by caregiver in relocating their residence because of child’s autism due to a variety of reasons e.g. to be nearer services, societal stigma, lack of family support related to the child’s autism. | ✓ | ||
6. | Emergencies/ accidents | Monetary costs related to medical emergencies related to the child. | ✓ | ||
7. | Religious trips, retreats and rituals | Many caregivers believed in the healing nature of undertaking religious rituals and visits which can incur monetary costs. Time expenses are collected only for extensive commitments, e.g. pilgrimages. | ✓ | ||
8. | Investigations | Monetary costs related to multiple investigations for child with autism, especially at early stages of diagnosis to confirm the child’s autism. | ✓ | ||
9. | Complimentary medication | Monetary cost of supplements recommended by specialists to help the child’s development from a nutritional perspective. | ✓ | ||
10. | Medication | Monetary costs associated with medications recommended by specialists to help the child’s co morbidities or other illness. | ✓ | ||
11. | Equipment | Monetary costs associated with equipment recommended by specialists to support child’s development or part of some treatment routine. | ✓ | ||
12. | Workshops and training | Caregivers spend time and money attending seminars or trainings related to autism, to develop their knowledge and skills to support caregiving. Monetary and time expenses collected. | ✓ | ||
13. | Special diet | Monetary costs associated with prescribed special diets. Expenses in terms of time can also be included. | ✓ | ✓ | |
14. | Support and care | Monetary costs related to loss of income for leave taken to support child’s autistic needs and the loss of allotted or paid leaves for the individual which could have been used in other situations e.g. vacation (for leisure). This includes leave taken for child’s hospitalization (inpatient contacts). | ✓ | ||
15. | Cost of certification | Disability certificates are free and provide the caregiver the ability to benefit from certain rebates and schemes from the government targeted towards caregivers taking care of disabled individuals. Time costs associated to getting this certification can be identified. | ✓ | ||
16. | Occupational adjustments | Caregiver’s may change their employment status to become full time caregivers. The monetary costs related to this can be included, using documentation of the last salary drawn and the year. | ✓ | ||
17. | Government rebates/schemes | The union government of India provides rebates for caregivers with dependents with disabilities, details of which can be collected in this section. Other schemes by public institutions help in reducing the caregiver’s overall monetary burden. | |||