Caregivers Need a Living Wage: Pass the Better Care Better Jobs Act Now! (by Elvina Scott)

Elvina’s daughter Colby. [image description: A young woman with light-colored skin smiles at the camera; she is seated in a family kitchen. Her brown hair is pulled back from her face. She has braces on her teeth, and wears a gray hoodie.]

My daughter Colby has turquoise braces and a dimple in one cheek. Her blue eyes are turning green, just like mine did as a teenager. She wears her luxuriant brown hair pulled back to frame her differently shaped ears. The photographer Mary Ellen Mark called her ears, “her signature.” She loves the word “shoes.” She loves Lana Del Ray, Clairo, and Cat Power. Her body is rocked often and deeply by intractable epilepsy.

During her first EEG as an infant she was regarded as a miracle. That she could not only survive the massive and frequent seizures, but could smile and breath and breast feed and pincer grasp at blueberries--she should not have been able to do any of this, given the severity of her seizures. Over the following 16 years, she has had brain surgery and multiple orthopedic surgeries.

Colby has apraxia and is nonspeaking. She has a series of sounds and gestures that people close to her can understand in context. She reaches toward the shelf with crackers when she is hungry. She holds your hand when she wants you to stay near. She pushes away the shirt she wants to wear when you give her a choice between two.

Colby receives Medicaid Home and Community-Based Services (HCBS) through New York State, where we live. She qualifies for nearly 24/7 care. We have never been able to staff those hours. It’s the same story as everywhere else: low wages and complex work leads to a nearly non-existent labor pool. Add to that the high cost of living in a college town, such as Ithaca, and people cannot afford to live on current wages prescribed by state policies.

Colby is 16 years old now. She has never slept through the night. She needs emergency meds administered. She needs care and attention before, during and after seizures. Colby needs full assistance to eat, attend to personal hygiene, and get around. Her independence will always require significant support from other people.

Colby and Elvina. [image description: A black and white photo of a mother and daughter. The daughter, to the left, looks away from the camera, smiling. The mother looks directly at the camera.]

The first few years of Colby’s life I stayed home and my husband worked. His work required traveling for long periods of time. Then I took a turn returning to work, which was great for a while. Eventually though, the care of a medically complex child became impossible for me to balance with full-time work outside the home. We could find no other qualified caregivers to work for what New York State’s Medicaid HCBS paid, nor could we, as parents, be compensated for her care. In the hours I work that someone else could be employed to perform, I feel that I am not a parent. I am a caregiver, and caregiving is not the same as parenting. Colby is not work, but her care is work.

It was a rapid descent from leaving full-time work to the food stamp application. Being unpaid caregivers meant our family qualified for $400 or so per month in SNAP benefits, and $600 or so per month in SSI based on Colby’s permanent disability. For a family of four. With a Grammy Music Award and a Smith College education between the parent heads of household, this was a shocking turn.

But instead of deciding this was impossible, which it is, I dug my heels in. We did what we had to do, like put dental care and car repairs on credit cards. Truly, what were our choices? Put our daughter in a permanent institutional placement? So I can work and afford life? Where are Colby’s person-centered choices in that equation?

My daughter deserves the dignity of excellent care that humankind, and a wealthy nation, are capable of providing. Our country needs to treat caregiving labor as infrastructure. And caregiving labor needs to be paid no matter who is doing the work. Colby’s care should not equal poverty for us, or for a direct support worker trying to subsist on current substandard wages. Raising wages for all care work would be a net positive to our economy. It would raise the GDP, lower poverty, and raise savings. The dignity of a liveable wage is within our capacity as a country and economy.

A Message from Little Lobbyists:

Caregiving is infrastructure. Our kids, and all people with disabilities, have a RIGHT to access the services and support they need to survive and thrive in their own homes and communities. But in order to make that civil right a reality, we need funding to support better jobs for caregivers and improve the quality and quantity of care for our families. That's why Little Lobbyists support the Better Care Better Jobs Act! Please call your senators and tell them why YOUR family needs them to pass full funding for this historic bill in the reconciliation package!

Elvina Scott is a mother, writer, and athlete. She has two children, one with disabilities, including intractable epilepsy. This parenting experience informs her writing and advocacy work. Elvina is an ultra distance runner. She is a graduate of Smith College.