Opinion: Surviving Whole in a Broken System

During October's Domestic Violence Awareness Month, we heard about the behind-closed-doors issue of family violence. But as hidden as domestic violence is, we experience a type of domestic abuse even more in the shadows: the abuse of people with disabilities by their caregivers.

In Texas, there are approximately 275,000 people receiving home- or community-based care, and about 300,000 personal care attendants (PCAs). Those numbers may look fine, but when you consider that a person receiving care often needs two or three shifts of assistance, you can see how uneven the ratio actually is. On top of that, the starting wage for a PCA is only $8.11, and the average wage is about $9 an hour.

There aren't enough PCAs and the pay is too low to attract more people to the field or to keep good caregivers. On top of all that, the nature of the work puts underpaid PCAs in a position of power over the people they're caring for – and that power is often exploited.

We are both strong, smart, empowered women living with disabilities that require us to employ PCAs. We rely on these PCAs for much of our basic needs, including getting us out of bed, eating, bathing, and more. Thanks to attendant services, people with disabilities can live in the community instead of being warehoused in institutional settings. Attendants can help people with disabilities attend school, go shopping, go to work, go out to eat. We become a part of our community instead of apart from it.

However, this reliance on PCAs opens us up to greater potential for abuse. Many people with disabilities trade safe and respectful relationships for the freedom to live in the community. And it's incredibly easy for the power dynamic to shift. PCAs hold great power to support or to abuse people with the disabilities.

When I (Renee) moved into an apartment with my boyfriend, we had a lovely attendant, but things kept disappearing. Recognizing our dependence on this attendant that we both liked, my boyfriend insisted that I was the one losing or forgetting things – a lie the PCA was happy to play along with. One day I found the attendant stealing my new bath towels. My boyfriend still insisted that we continue to employ her. (I soon moved out and away from the gaslighting PCA and unsupportive boyfriend!)

Often because the care is personal (bathing, dressing, transferring in and out of bed or chairs, toileting, etc.), the person using attendant care is treated or viewed as a child – patronized or expected to be happy with whatever they receive.

I (Nancy) have had more than 30 attendants come and go since I first enlisted the assistance of an attendant at the tender age of 19. It is still hard for me to fathom that theft, verbal abuse, mental abuse, exploitation, deception, and physical abuse can happen, but it did happen to me. It became a part of life. I have had a lifetime of attendant experiences – mostly good – but when they are bad, they can break a human's spirit.

The pool of available PCAs continues to shrink thus increasing risks for abuse and exploitation. People with disabilities who rely on this service for basic care needs are not eager to speak out or complain or report abuse. The quid pro quo is putting up with abuse and exploitation to stay in the community and live as independently as possible.

Emotional abuse. Financial abuse. Physical violence. We talk about these in romantic or family relationships, but it is time to bring to light the impact that caregiver abuse has on the nearly 275,000 people in Texas needing their assistance. It is time to support people with disabilities and PCAs by paying caregivers more, and giving them – and the people they serve – the respect they deserve.

Co-authors Renee Lopez and Nancy Crowther serve on The SAFE Alliance’s Disability Services Program Advisory Council.

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