An Open Letter to Senator Mark Warner: Don't Leave Caregiving Out of the Infrastructure Bill (by Jill Jacobs)
Dear Senator Warner,
There is a particular feeling, a whole set of sensations, ranging from shakes, sweats, feeling of rawness inside my body, aching bones, swollen lymph nodes under my chin and arms, nausea and weak/painful muscles that I get when my body is dumping thousands of white blood cells all at once from my lymph system into my bloodstream. It is awful and exhausting. This morning, even after a night's sleep, my legs and neck and arms ache badly and I feel a physical weakness that is hard to describe.
I say this here, in public, because today I have to care for my adult son who is disabled, and lifting him will be dangerous for us both, painful and exhausting for me. I will cook for my son, feed him, and assist with every single thing most people do without a thought. Today I will also support my daughter, who has a disability, too. I have done this in one way or another for nearly 30 years, and since the pandemic began, returned to supporting full time, every single day, one or both disabled family members. Since April, I have done this while also being treated for cancer, and I have continued to work throughout.
This was initially going to be an apology for not continuing later into the night last night, reaching out to people who might contact Senator Mark Warner about his intention to leave caregiving out of the infrastructure bill. But, no. I will not apologize.
Jill Jacobs with Senator Warner
Senator Warner, you may not remember me, but we worked together a whole lot when you were Governor of Virginia on Medicaid Home and Community Based Services (HCBS). Here is a photo of us together in your office one day when I came with my friend Keith to talk about HCBS. That day we talked about the value of caregiving, of caregivers, to disabled folks and their families, to communities, to society, to the economy. My family and I ask that you recognize again now that Caregiving is Infrastructure.
Since Covid began we have faced an ever-increasing caregiver crisis in this country. For my family, we are now finally 60% staffed. 60%. With my years and years of experience navigating the system, we are finally 60% staffed. Why? Because there are no caregivers anymore. Why should there be? We Americans disrespect caregivers. We called them 'heroes' during Covid, yet demonstrate by our actions, how we really feel. We view caregivers as worthless. We do not pay them fairly nor properly, offer zero health insurance benefits, no leave, no training, no career advancement. The pandemic's added risk of death finally broke the system. We need to fix this now.
The caregiving crisis is real and will only get more real as we face the daily care needs of an aging population and added numbers of Covid survivors.
I realize there is huge pressure now to make this Infrastructure bill pass and I appreciate and honor your work in a bipartisan way to get to that point. However, doing it on the backs of disabled people and their families, by not supporting caregivers, is taking a serious risk with human lives, the very people who have suffered and lost so much during Covid. And it harms the whole community, our country, our economy because this is a huge area of need right now, of potential employment, of people working and paying taxes, buying products, spending money, in every city and town in this country. Caregiving allows family members and many disabled folks to work, too, which diversifies our investment and increases our tax payments and spending. The caregiving spending in this bill is an economic investment in people, in cities and towns and states in a real, solid, human way.
Senator Mark Warner, find another way to reduce the amount of this Infrastructure bill. Keep caregiving in the bill and let's see HCBS flourish, create jobs, create community activities and living and spending.
Let's talk Senator.
Your constituent,
Jill Jacobs
P.S. For anyone reading this, I ask you to reach to Senator Warner, too, as well as anyone who represents you, and let this be known.
Jill Jacobs has been working for disability justice for 28 years. She’s the Executive Director of the ENDependence Center of Northern Virginia (ECNV), one of the oldest Centers for Independent Living in the Country. Jill is a Social Worker with 22 years of experience in health and human service policy, programming, analysis and service delivery systems. She is a graduate of University of Texas and was trained by US Army Social Work Services at Fort Hood, Texas. Jill is also an activist, artist, mother of four, grandmother of three, and a resident of the Commonwealth of Virginia.