Cecelia Holmes: Families like ours need DC Council to fully fund Birth-to-Three law

Imagine the difficulty of being a new mom in DC with limited financial resources and a baby who has an unknown health condition. Imagine the fear and frustration of not knowing how best to help your newborn child after receiving different diagnoses from doctors, having tried various tests and treatments for two years with no success.

Eight years ago, this is what I went through when my son Dwayne was born.

Since then, my family has spent most of his life trying to determine his condition and how best to care for him. This trial-and-error approach has put his life in danger far too often. Dwayne needs a specialized team to coordinate his care, but these holistic resources are out of reach for many parents in DC — particularly in Ward 8, where we live.

I speak for many mothers in the District of Columbia when I say that providing proper care for our children born with chronic illnesses requires more resources than we have access to. In Ward 8, many people have difficulty just making ends meet, and communities are starved of resources such as high-quality medical care or even grocery stores. In this type of environment, it’s nearly impossible to arrange the type of constant care that chronically ill children need to live their best lives. Whenever I stop to think about Dwayne and all of his needs, I’m faced with the shocking realization that if I weren’t able to coordinate his care, his life would be at risk.

Let’s remember also that DC has the highest rates of infant and maternal mortality in the nation, which is unacceptable.

This city needs major investments to improve the health of mother and child, like those found in the Birth-to-Three for All DC Act of 2018. If this legislation were fully funded, it would ensure coordination among doctors, therapists and other resources to support mothers and children up to 3 years old. The law would also raise the wages for early educators, helping to ensure there are high-quality, qualified teachers in the classroom teaching and caring for our children.  

Early in my pregnancy, Dwayne suffered a stroke; he was born with cerebral palsy, epilepsy and hydrocephalus. Because the stroke prevented his pituitary gland from fully developing, he will need hormone replacement therapy for the rest of his life. This hormone imbalance also led him to develop a rare form of diabetes called diabetes insipidus, which if not properly monitored can cause a life-threatening stroke. He is in a wheelchair because of his condition and receives speech, occupational, physical and vision therapy to help him with his fine-motor skills. Though we have now found a routine that works for Dwayne, along the way there were many close calls on his life, as well as many years of unnecessary treatments and frustration.

As a patient access coordinator at MedStar Health, I’m well-acquainted with the District’s health care system. In my prior position as a pediatric referral coordinator, I often came across children and parents who needed help arranging their care. Even with this knowledge, I had trouble finding care for my son. Though I identified places where I could get assistance, it never felt like the people there were actually listening to me when I tried to update them on Dwayne’s condition; it always seemed they were simply shuffling him along so they could see the next patient.

For example, one care facility was convinced that Dwayne was completely blind. I knew that Dwayne was born with a limited field of vision, but I also know that my child can see. I see him pointing at things he wants, and playing on my phone late at night. No matter how many times I explained this, the professionals at this facility insisted he needed intensive vision therapy.

Who am I to second-guess the advice of an expert? Who am I to limit my child’s potential? Even though I doubted their suggestions, I had Dwayne undergo this vision therapy for months until a teacher for the blind informed me that he did not meet the criteria for being legally blind. For a parent trying to help their children live their best lives, there’s nothing more frustrating than being ignored and given contradictory information.

For my son, these types of mistakes can be life-threatening. Many times, Dwayne has been hospitalized because someone made a mistake in monitoring his condition. As a parent, can you imagine what that feels like? Every day hoping that the people in charge of his care pay attention to his needs, and every day dreading the phone call letting you know your child has been hospitalized. This is something I still have to live with, even after years of knowledge and research.

The importance of having coordinated care cannot be overstated, which is why the Birth-to-Three for All DC Act is so important. Having access to these extra resources via the physician’s office would be a game changer, providing a one-stop shop for information and enabling coordinated conversations between all involved parties.

Though my family has now worked out a good routine with Dwayne — and we’re all happy with his school — we did have to go through heartache to ensure this situation.

In October 2017, an employee at the school was using the Hoyer lift to move my child. Either because of improper training, understaffing or neglect, Dwayne was dropped on his head during the lift. The trauma from that experience is immeasurable, as was my fury at the school staff who allowed this to happen. Although the principal assured me that the teachers would go through training on how to properly operate the chairlift, this never occured due to funding shortages. It is vitally important that we invest in our teachers, both to make sure they are supported in their roles and to keep the good teachers working in our schools.

Full funding for the Birth-to-Three for All DC Act would improve our chances of hiring and maintaining high-quality early educators in the city. Eighty percent of brain development happens in the first 1,000 days of life, and we need to invest in the people who are investing in our children. A teacher worried about making ends meet isn’t able to provide the care and attention our children deserve. When children are given what they need to thrive, their possibilities are limitless. When parents are provided the resources to address physical, mental, emotional and nutritional health, parents can help their kids thrive.

We need the DC Council and Mayor Muriel Bowser to follow through on the promise they made to DC families when they passed the Birth-to-Three for All DC Act last year. This comprehensive bill, if fully funded, would create and expand programs that provide for the health and wellness of the mother and child. It would also invest in our early childhood educators by bringing their wages up to match DC Public Schools teachers. The bill’s overall goal is to make child care cost no more than 10 percent of a family’s income. We desperately need this investment in our communities, especially in wards 7 and 8, where our children are already falling behind their peers in other parts of the District.

Unfortunately, I feel that the mayor has already proved that she isn’t willing to make the investment needed to really change lives of people in DC, especially people in my community who need these programs the most. In her budget proposal, Bowser put aside only $5 million — just one-sixth of the $30 million needed — to begin funding these programs and increase wages. As council members begin working on revisions to the mayor’s fiscal year 2020 budget, we need them to fund this shortfall.

All parents imagine the worst will happen if they aren’t there, but for Dwayne and me, the worst is too close to home. We can’t wait, and we don’t want other families to suffer as we have.

Cecelia Holmes, a Ward 8 resident, is a member of Safe Places for the Advancement of Community and Equity In Action (SPACEs In Action), which works on creating expanded opportunities for low-income communities, with intentional outreach in Black communities. The group’s Twitter handle is @spacesinaction.

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