The complainant is the primary caregiver for her husband, who has very complex care needs. She receives home care and brief periods of in-home respite services coordinated by the Local Health Integration Network (LHIN), but is unable to access out-of-home respite care that would allow her to take a vacation and get a break from her caregiving responsibilities.
If her husband’s care needs could be managed in a long-term care home, the caregiver would be able to access up to 90 days of out-of-home respite care each year in accordance with the Long-Term Care Homes Act, 2007. However, her husband’s care needs are too complex for a long-term care home and most chronic care hospital respite programs, and he requires specialized hospital-based care. As such, there are no out-of-home respite options available. The complainant felt it was unfair that caregivers with the heaviest burden of care do not have access to services that would provide them with a period of relief.
Patient Ombudsman contacted the LHIN to determine what options were available to address the complainant’s respite needs. Over the last ten years, the LHIN (formerly the Community Care Access Centre) has regularly canvassed hospitals that provide complex care to seek out-of-home respite for this patient. One facility provided respite care for a few years, but later discontinued providing a respite option.
The LHIN confirmed to Patient Ombudsman that there were no dedicated respite beds for patients needing the level of care that this patient needed, but agreed to continue to work with complex care hospitals to pursue the opportunity for a respite admission.
The LHIN also agreed to conduct a scan to identify respite placement options on an annual basis. Patient Ombudsman also raised the issue with the Ministry of Health and Long-Term Care to identify out-of-home respite for complex patients as a gap in the continuum of care.