SARAH CRAWFORD: Don't tell women what they can do with their bodies. Fund services that inform, comfort and support families
Friday, June 11, 2021 -- If we want to get serious about walking with women through their journey of a prenatal diagnosis, the prescription is not to tell a woman what she can and cannot do with her body. The prescription is funding for services, information for families, and comfort for families in knowing that their child will have access to education, therapies and the medical supports that they need.
Posted — UpdatedThere is no disagreement about the value that all individuals bring to the world. Having worked many years with children and adults with disabilities, I share the sentiments from parents who spoke in committee that their children have taught them more than they could have ever imagined.
As CEO of an organization that serves children and adults with disabilities, I have one of the greatest privileges and responsibilities that a parent can ask of another human – and that is to care for their child with disabilities. We do that 24 hours a day, 365 days a year, for more than 600 individuals and their combined 1,800 family members in the Triangle every year. But that barely scratches the surface of the number of families that need supports in North Carolina.
We have a person living at our facility right now whose mother told me that the diagnosis when her daughter was born was that she was “incompatible with life.”
“Incompatible with Life.” Can you imagine hearing that? Imagine that for your family, for your child? Today, that same child is in her 30s and her mother and father are so grateful that there is a place that her child can get the medical care, therapeutic supports and residential services that she needs, not just to survive in this world, but to thrive.
But that is not the story for so many of our families living across this state. There are, as we all know, 15,000 people in North Carolina that qualify for services like these. But they sit, waiting for years. Families need these services, they need respite from being doctor, nurse, personal care giver so that they can get back to playing the most important role in their child’s life. And that is as parents. We, as a state, have not allocated funds for these services and we must.
So when we talk about why, why a prenatal diagnosis of down syndrome can be so frightening for a family. I think it is important that we consider, maybe it’s because we have not provided adequate supports for these families and for their children. We must to work towards reducing stigma and providing supports. We know how to do that. We know that early childhood intervention services can change the trajectory for a child with down syndrome. Yet these services are woefully underfunded. We know that as these children grow some will need community living supports, and yet, these services are not readily available to those who have the greatest need.
Colleagues, if we want to get serious about walking with women through their journey of a prenatal diagnosis, the prescription is not to tell a woman what she can and cannot do with her body. The prescription is funding for services, information for families, and comfort for families in knowing that their child will have access to education, therapies and the medical supports that they need.
There are no fewer than 29 bills that have been filed this session that provide support for people with disabilities. And I look forward to working with colleagues on those bills.
Yet, here we are today, distracted with a bill that does not provide care and support to so many families across our state. I urge you to vote no on HB 453.
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