Caregiving Is Infrastructure (by Stacy Staggs)
Emma, a little girl with blonde hair and blue eyes and a trach, and her mom Stacy a blonde haired blue-eyed woman, embrace while wearing blue “Caregiving is Infrastructure Little Lobbyists T-shirts.
In many ways, my family is like any other. We want our children to grow; to love and be loved; to do well in school, and make their way in the world. We want them to be okay after we’re gone. But for my family, none of these things are possible without support. Frankly, we wouldn’t survive without Home and Community Based Services (HCBS), specifically, in-home nursing.
Our twins are joyful, rambunctious, and the lights of my life! Sara Bean is a nature lover. She is happiest when she’s splashing in the water or digging in the dirt. Emma lights up the room with her smile, she has surpassed her medical team’s expectations. When they were born at 28 weeks via emergency c-section, their birthdays were too much to hope for.
Emma can do great things! She loves therapeutic horseback riding, and she’s building stamina to play with her twin sister. One thing she has never done is take an unassisted breath. Emma lives with an artificial airway through a breathing tube as an outcome of their premature birth and prolonged respiratory assistance. She eats through a feeding tube that was surgically placed when she was 3 months old.
It’s hard to describe the relentless hypervigilance that comes with an artificial airway. When it’s dislodged, Emma is immediately in crisis. I’ve seen the light go out in her eyes as we scramble to reinsert her breathing tube.
We have family and friends who love us and celebrate the girls' milestones with us but only my husband and I are airway-trained, unpaid family caregivers who’ve forged life-saving skills through fire, and her team of in-home nurses who have chosen caregiving as their profession. All of Emma’s nurses are trained, licenced and capable professionals. Most are women of color and immigrants who provide vital services, yet have been historically undervalued and underpaid. This means some families experience a turnstyle of rotating caregivers, losing important consistency of care.
I had to leave my career when my girls were born, and I long to return. For me to be able to get back to work, Emma needs robust support to survive and thrive. That can only happen by fully addressing the inequities we clearly see exist. When you hear people say #CaregivingIsInfrastructure, this is what we mean.
My daughter’s survival depends on Home and Community Based Services being well-funded, implemented, and protected. Included in the $400 Billion budget in the American Jobs Plan, we need Congress to ensure dedicated funding for the expansion and improvement of these vital services, including increased availability AND resources to ensure that caregiver jobs provide promising career paths, and liveable wages.
I have to admit, it was a tough pill for me to swallow when I came to understand that I am not enough. Despite my utmost effort, I cannot give Emma and Sara everything they need. The current state-level patchwork of eligibility, services and funding means that if we need to move for my husband's job or to be closer to family, we could lose access Emma needs to stay home with us - where she belongs.
Studies confirm that Home and Community-based Services save lives and create better long-term outcomes for children and adults. Access to HCBS affords disabled people of all ages the civil rights they are entitled to - the self-determination to choose where they want to live. Because of the pandemic, we are in a rapidly expanding public health crisis, and are only beginning to confront the exacerbated inequities and widening gaps in infrastructure our country is facing.
We need our legislators to protect American families; to provide relief and support; to fix broken systems and do the job we elected them to do. My daughters are just 7 years old and have long lives ahead of them. With our legislators' urgent commitment to improving infrastructure, in the future we’ll hear more stories of self-determination and fulfillment.
Stacy Staggs is mom to Emma and Sara and Little Lobbyists Director of Community Outreach.