In response to the June 20 letter “Parents should not be compensated for taking care of special needs children”:
Heather Johnson assists her 5-year-old daughter Adaline, who has a rare genetic disorder and needs constant care, at their home in Searsport. Maine parents of children with special needs are placing their hopes in a bill that would pay them to be their children’s caregivers. Sofia Aldinio/Staff Photographer
I am not only a parent, but also a professional working within the industry. Let’s be very clear, these children are not receiving the comprehensive care that they have rightly qualified for through MaineCare funding, Maine’s federally funded Medicaid programming. Most of these children have qualified for a certain number of nursing care hours, but because of the workforce shortages, they are receiving very little, if any at all, forcing these families to quit jobs and provide intensive care.
Taxpayers are not paying for care when it is not being fulfilled and not being billed. Families are asking to receive payment for the hours that they have qualified for: They are providing this care themselves because it is not being professionally provided. This is funding that has already been approved, already exists and, instead of going unpaid because of nonexistent professionals, would go to the family.
When a family cannot work because they are not receiving the care they have qualified for, it forces them to seek alternative financial means to make ends meet, including food, housing and heating assistance through the state. These financial programs cost taxpayers more than paying caregivers to provide care to their children.
Nobody wants to be forced to decide between providing care for their disabled child versus providing financial stability for their families. That is the reality for these families and, until you know that reality, judgment should not be passed.
Carrie Woodcock
Saco
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