Families that choose in-home care for their loved ones take the brunt of inadequate systems of care. Some implications for families: One or both adults in the home often have to forego their careers to care for the family member, forcing them to live in poverty....
To protect our loved ones, hundreds of thousands of families who relied on in-home care went without caregiving or nursing throughout the pandemic. Family members picked up the slack. In our home alone, the government saved on three part-time caregiver paychecks for...
When families are up in arms about caring for our loved ones, it's not because we don't want to do it. It's because we don't want to do it in this way. Parents/guardians/caregivers hardly speak up about our reality because we are met with options that set our children...
When parents of non-disabled children say they are tired, they are met with sympathy and compassion. Grandparents and friends rally around with support. When parents of disabled children say they are tired, the conversation changes to respite centers and specialized...
Breaking care policy is not an exception, but an accommodation A sales associate for elimination supplies scolded me for not being better organized. She was upset I was calling last minute to reorder supplies we required the same week. I should write it in my...
What if we did caregiving differently? What if systems of care weren't a one-size-fits-all solution? What if the end-user had a say? What if we trusted the end-user's personal experience? What if we didn't impose? What if support were preventative rather than...
Working together for quality care is key Separating specialists from the learners or clients as well as from one another only creates miscommunication, disconnection, and unnecessary wait times in an already very bureaucratic system. We need to work together for the...
Two decades into the 21st century and most decisions made about neurodivergent and chronically ill/disabled individuals are made by non-disabled people many levels removed from the lives they directly impact. Social service is set up to assist individuals and their...
Breaking care policy is not an exception, but an accommodation A sales associate for elimination supplies scolded me for not being better organized. She was upset I was calling last minute to reorder supplies we required the same week. I should write it in my...
What if we did caregiving differently? What if systems of care weren't a one-size-fits-all solution? What if the end-user had a say? What if we trusted the end-user's personal experience? What if we didn't impose? What if support were preventative rather than...
Working together for quality care is key Separating specialists from the learners or clients as well as from one another only creates miscommunication, disconnection, and unnecessary wait times in an already very bureaucratic system. We need to work together for the...
Two decades into the 21st century and most decisions made about neurodivergent and chronically ill/disabled individuals are made by non-disabled people many levels removed from the lives they directly impact. Social service is set up to assist individuals and their...