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Some implications for families
Those who create the policies but don’t have to deal with the outcomes of the rulings are the ones who benefit most. Governments, agencies, social service centers, and even their employees gain more than the individuals and family members themselves.
During the pandemic, many families paused their in-home services. As a parent caring for my child 24/7, I received zero financial support. If anyone else cared for my child, they would have been paid. As a parent doing the exact same tasks (and more for more hours), I was not eligible for the same compensation. The agency banked that money.
Attending to my son during a pandemic required that I stop working to coordinate/manage/administer care. Clinicians handling my son’s file (with no direct contact to him or his care) continued to work for pay.
I am not suggesting removing the livelihood of employees whose roles are essential. I advocate equitable consideration for parents/primary caregivers who pick up the slack when systems fail us.
This is not a pandemic issue. The pandemic only highlighted how flawed, discriminatory, and unsupportive these systems are for disabled individuals and their families.
Deinstitutionalization saved governments money while abandoning families who want to care for their loved ones. We want equal support so that our children can live the full, inclusive lives that are their right.
The current system forces isolation, burnout, and poverty. This is no longer acceptable.
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