Domestic Violence Prevention, Disabilities, and Caregivers

Domestic Violence Prevention, Disabilities, and Caregivers

In an effort to create a safe space to read about an uncomfortable topic, like domestic violence, I want to ask you to close your eyes for a moment and envision what it might take to eliminate violence.  Take some deep calming breaths, in through the nose and out through the mouth, feeling your diaphragm expand as you fill with the good and contract as it expels the bad, and read on when ready…

Domestic Violence is a terrible thing that comes in many different forms; physical, emotional, spiritual, sexual, marital, parental, verbal, sensory, etc. It’s violence in the home, it’s violence at the hands of someone you trust, someone you rely on, someone you may love. In every relationship the potential for violence exists. It may come from the caregiver, it may come from the person receiving care, or it may come from both. Intentional domestic violence is easily recognizable as evil, but unintentional domestic violence is something else entirely, and potentially even more traumatizing as it is unexpected and uncontrolled. Both must be prevented.

How do we prevent domestic violence and reduce isolation? Through support, engagement, and open communication and creating safe spaces. No one should ever feel as though they are alone and have no one to talk to. If they are trying to speak up, no one should ever feel as though no one cares or no one is listening. People with disabilities, including conditions of aging that most will experience later in life, are among the most vulnerable to domestic violence. Our disabilities, if left unsupported through accommodation, can isolate us. It is through supported independence that this population is best equipped to prevent such violence before it occurs.

Disabilities can impact communication and emotional responses as much as they impact mobility, sensory experience, and functionality. Those closest to people with disabilities are often the most aware of how they have adapted to accommodate these challenges in a world that was not designed from the start to be accessible. Our loved ones are often the most capable in supporting our independence, including our ability to speak out about our own needs, including our own safety and treatment from others. Our friends, congregations, and close community members are often those most sensitive to our wants, desires, needs, limitations, and safety accessing social engagement. These people are not just our friends and family, they are our Caregivers, and their support helps us maintain our independence as active members of our families and community. Sometimes the people with the disabilities are the Caregivers too.

Fighting against isolation comes with most disabilities and conditions of aging. It is sometimes easiest to stay home, especially as the impacts of the disabilities and age progress; but the less engaged we are with our community, the more vulnerable we become. As our community shrinks, those closest to us must naturally provide additional support, or we adapt but take on more than we should ourselves, sometimes at physical risk. Regardless of what disability you have, the lack of social interaction takes an emotional toll, potentially leading to outbursts that can become violent themselves. Those who are providing support, sometimes the only person providing support, without respite care can easily become overwhelmed. Leading to potentially violent outbursts as well. The care relationship can become toxic.

Frustration leads to anger, anger leads to aggression, aggression leads to suffering. Someone who needs daily assistance with personal hygiene, being vulnerable to receive support from someone they love and trust, unintentionally becomes a victim of sexual assault because that person wiped or cleaned too aggressively. Someone who needs mobility assistance becomes the victim of physical abuse because the person assisting them unintentionally injures them by rushing, being rough, or not paying attention to their safety during a transfer. A loved one becomes the victim of unintended verbal abuse because the person with the disability’s frustration reaches a breaking point and there’s no one equipped to hear it.  An aging immigrant who must rely on a visiting nurse who doesn’t speak their language fluently becomes a victim of neglect, suffering emotional abuse due to the barriers in communication and culture.  Instances of unintended domestic violence, fueled by uncontrolled emotion, can have lasting traumatic impact on the people involved and their relationships going forward.

Getting Support, Removing Toxic Stress

Maintaining connection with a supportive community of Caregivers, including close family, is the best way to prevent this toxic care environment from developing, and provides support to guard against the violence if it begins to develop. In today’s world of pressing fast paced social and work demands it can be a challenge for those who want to help to make the time. Many people wind up isolated from their would-be caregivers for these reasons too, and don’t even speak up when they need help because they don’t want to be an inconvenience or a charity case. Ultimately this could lead to institutionalization, which opens a whole new door to potential structural or systemic violence.

However, many don’t know that if you are eligible for Medicaid Waiver services, there is a service that can help you establish a supportive network of Caregivers by providing compensation for the non-skilled services that they provide. Many people with disabilities and conditions of aging don’t apply for Medicaid Waiver services because they assume they won’t qualify without exploring it. Advocates Personal Care, an approved Medicaid Waiver service provider, is seeking to employ family and community Caregivers of Medicaid Waiver eligible people with disabilities and/or conditions of aging. Offering a starting wage of $13 an hour for services that they may already be providing to someone close to them. If someone is unsure if they qualify for Medicaid Waiver Services, or doesn’t know where to start, or what questions to ask, Advocates is able to assist with navigating that process.

Advocates Personal Care can be contacted by text or phone call at (317)527-4251, or online at https://advocatescare.com/get-started/

Having paid Caregivers through Medicaid Waiver services helps people with disabilities and conditions of aging maintain their independence in their own homes by ensuring appropriate supportive care when needed. As the caregiver is receiving payment for the time that they are providing services, it becomes easier for the Caregiver to reduce work hours or sacrifice personal time if necessary. A Consumer of Medicaid Waiver services can have more than one paid family or community caregiver, allowing the supportive services to be shared by the Consumer’s community. Having paid Caregivers as employees of Advocates Personal Care allows for better coordination and engages the provider, Advocates, as oversight and another layer of protection in the event a care relationship becomes toxic.

Caregivers must clock-in and document their time, and Advocates Personal Care must follow-up to ensure the care provided is what the Consumer needs and wants, giving the Consumer the control over what services they are receiving and from whom. Advocates is able to provide non-skilled services to any Medicaid Waiver eligible person with disabilities or conditions of aging throughout the state of Indiana, as long as the Consumer has enough potential Family and Community Caregivers to ensure consistent care when needed, including backup if an expected Caregiver is unavailable.

Some examples of non-skilled services are meal planning & preparation, laundry & light housekeeping, grocery shopping & community-based errands, medication organization & reminders, socialization & safety, mobility & transfer assistance, assistance with hygiene, eating, and other activities of daily living. If you are a person with disabilities or a senior citizen who relies on support with these types of activities to maintain your independence in your home, or if you are providing this kind of supportive care to someone close to you who may be eligible for Medicaid Waiver Services, contact Advocates Personal Care to learn more.

Advocates Personal Care, (317)527-4251, https://advocatescare.com/get-started.

Written by: Jeremy K. Warriner – Accessibility, Hospitality, & Outreach Consultant; Inspirational Speaker; CEO & Founder of Walking Spirit & Spirit Therapies, LLC.

Jeremy Warriner

Jeremy Warriner is an Indianapolis native, Black Belt in Shorei-Goju Ryu Karate, with a degree in Consumer and Family Sciences from Purdue University emphasizing in Hospitality and Tourism Management.  He worked as an Operations Director and Assistant General Manager across multiple brands and markets in the Hospitality industry for over a decade.  In 2005 Jeremy sustained severe burns in a car accident that required the amputations of both legs from above each knee.  This traumatic event led Jeremy to redefine his path as he accepted his newly added identity as a person with disabilities.  Whether walking on technologically advanced prosthetic legs or utilizing a wheelchair, Jeremy is an active member of his community, charter member of the international Rotary Club for World Disability Advocates, and founder of Walking Spirit & Spirit Therapies, LLC which provides Diversity, Equity, and Inclusion assessment, consulting, and training from a Disability Lens.  Jeremy’s current project is adapting Karate to his disability.  He can be reached through his website at https://www.walkingspirit.org, or by email at jeremy@walkingspirit.org.             

Prevention Spotlight: Nicole Kass Colvin

Disability Justice and Violence Prevention Spotlight: Nicole Kass Colvin

Indiana Disability Justice periodically highlights collaborators and partners across the country who are centering people with disabilities and disability justice in the work to end violence. We hope that you will read all about Nicole Cass Colvin who is practicing at the Ohio Alliance to End Sexual Violence. In this interview Nicole walks us through what disability justice means in her practice and where the field could use improvement and redirection.

Ohio Alliance to End Sexual Violence

The Ohio Alliance to End Sexual Violence serves as Ohio’s rape crisis coalition. State sexual assault coalitions serve as the main training and technical assistance provider for rape crisis centers on best practices in programming and administration, and they advocate on behalf of rape crisis centers and the survivors they serve in public policy advocacy efforts at the state and federal levels.

Where you practice primary prevention & disability Justice? I work with the Ohio Alliance to End Sexual Violence where our mission is “As Ohio’s statewide coalition, OAESV uses an anti-oppression lens to advocate for comprehensive responses and rape crisis services for survivors and to empower communities to prevent sexual violence.” As the Coordinator of Community Responses at OAESV, I primarily work with Sexual Assault Response Teams (SART) and Coordinated Community Response Teams (CCRT) across Ohio’s 88 counties, which may be seen as intervention, but I believe can be vital in primary prevention. SARTs and CCRTs are spaces where we can explore making our communities as safe and cared for as possible, and have people at the table to make change happen. Often this looks like focusing around the community level, but communities can get creative with it and really make impacts that span across levels.

What do you like to do for fun? Hobbies?

Read a lot of fantasy novels, listen to a lot of podcasts, get outdoors, explore the arts, and spend time with my chihuahua pug, Rizzo.

I am a white cis-female, nearly 30, with medium length wavy hair and big burgundy cat-eye style glasses. In this picture, I am smiling, have on red lipstick, a beige and gray sweater, and have my arm on my hip.

About Nicole

After studying psychology, I started in the anti-violence field in 2015 as a legal advocate in rural Alaska. Since then, I’ve gotten to work with some disability-serving agencies, and with building up a new sexual assault program in Indiana. Currently, I work as the Coordinator of Community Responses at the Ohio Alliance to End Sexual Violence. I live in Ohio, but in my town, one side of the street is Indiana and the other side of the street is Ohio, so I feel very passionate about addressing sexual violence and oppression in both Indiana and Ohio. Email: colvin@oaesv.org

What does disability justice mean to you as you practice primary prevention?

Primary prevention is about creating a world where sexual violence doesn’t exist or is unconscionable. We know that sexual violence can happen to anyone, and we know that sexual violence is a tool of power and control that thrives in the midst of inequity, lack of accessibility, and oppression. As a society and as an anti-violence movement, we don’t adequately care for people with disabilities. Due to the ways that our systems are structured, people with disabilities are disparately impacted by inadequate income, housing, education, food stability, or care, and even more so throughout the pandemic.

Primary prevention is also about centering, empowering, and uplifting people with disabilities. Speaking to my own mistakes in this field, how often do we put outreach to disability-serving organizations on the to-do list and never get to it? How often do we do prevention programming, with curriculum made for, by, and presented to neurotypical people without disabilities? How often do we as organizations have requirements for staff and volunteers that may exclude or drive out people with disabilities? With the help of my incredible colleagues at OAESV (shout-out to Olivia Montgomery, Sarah Ferrato, and Caitlin Burke!), I’ve learned that if we really want to practice primary prevention, we have to let go of the idea that we need to “reach specific communities” (which tends to mean our services are designed around a specific population – likely a population that we are most comfortable with), and rather be intentional in each and every thing that we do to ensure that we are really being proactive about ending violence to those most impacted by it. For me, this has been a reframing. Instead of “maybe consider having disability-serving agencies on your SART” or “here are some tips on a specific subject, and by the way, here’s how to make it accessible”, we might reframe it as “let’s explore how sexual violence most impacts your community, hear directly from survivors most impacted, and build our systems and resources off of that information.”

Notable quotable from my colleague Sarah who assisted me with primary prevention aspects of this post: “Primary prevention cannot happen if we don’t ensure that marginalized folks are included in the brainstorming, decision-making, and implementation processes of education and outreach. Shifting social norms includes shifting community attitudes about who deserves safety, dignity, and respect. If the answer isn’t a resounding ALL PEOPLE, we cannot begin to address the ‘how.’”

Primary prevention also means taking a hard look at our communities and our services and both talking about and engaging in actionable steps to make them more equitable, accessible, and accepting. This can be as big as changing systems, and as small as having conversations with folks in our communities about how different actions and words impact our neighbors with disabilities. It can even mean asking for someone’s Venmo, CashApp, or PayPal to give some extra cash to help them meet a need or compensate them for emotional/intellectual labor.

Does anything about primary prevention need to change to bring disability justice to the world?

Yes – I don’t think there are enough conversations about disability justice within primary prevention. Again, I think we often design things based on a specific population and then as an afterthought add in “others.” For primary prevention to be truly effective, especially around disability justice, we need to be thinking of intersectionality. This also means we need to be creating environments where people with disabilities are included in giving and receiving primary prevention, including exploring the barriers that our organizations have that may impact people with disabilities in employment, volunteering, or consulting. It also means being intentional about recruiting volunteers, employees, leadership, and consultants. Some examples include exploring education (or even heavy lifting!) requirements in job postings, providing employees with plenty of Paid Time Off and other benefits, and paying people for their emotional and intellectual labor.

Additionally, I know I often thought of primary prevention as doing school programming, teaching consent, building developmental assets, etc. These are all great things (find out more about needed changes to these aspects of primary prevention here).  However, it’s not the full picture of primary prevention, which also means actively building equity and bridges over barriers, both in our communities and in our systems. We also need to be more open about ableism, eugenics, and social Darwinism in our current state. People with disabilities are not disposable and if we really want to live out our missions within the anti-violence field, we need to be active in centering our care.

Do you have a favorite prevention activity or strategy you use to achieve disability justice?

I participated in a training a few years back where a ground rule was “Step Up/Step Back” (please note that this language is unintentionally ableist and Make Space/Take Space is an alternative with more inclusive language), meaning if you are someone who is normally really quiet, to challenge yourself to speak up in the training, and if you’re normally more talkative to let others speak. I think of this often in terms of primary prevention, anti-oppression work, and disability justice. I like to incorporate intentionality and pause and think, “Do I have something to add here that people need to hear, or is it a time for me to pause and make space?” Often in terms of disability justice, this is a balance of speaking up in spaces where my voice may be received because of my power, privilege, or relationships, and de-centering myself where my presence may be more disempowering to people with disabilities. My advocacy work and collaboration with IDJ have shown me how important it is to center people with disabilities – “nothing about us without us.” In my advocacy, this often looks like hearing what survivors with disabilities are saying and when they feel safe to be centered, it can be a conversation of, “Hey, would you want to get involved with IDJ?”

What are some resources that you have created or that you just love that you want to share (articles, toolkits, etc.)?

There are so many resources that I love but a few favorite or recent resources relevant to disability justice include:

Are you available for consulting?

I don’t do private consulting at this time, but do provide training and technical assistance across Ohio. I highly recommend working with and paying consultants, especially people with disabilities; Black, Indigenous, and People of Color; and survivors.

Some of my favorite consultants/places to connect with consultants at this time include:

  • Indiana Disability Justice (indisabilityjustice.org, indisabilityjustice@gmail.com)
  • Sexual Assault Advocacy Network (saancommunity.org)
  • Ohio Women of Color Caucus
  • Olga Trujillo (olgatrujillo.com)
  • Bianca Laureano (biancalaureano.com)
  • Olivia Montgomery and Breanna Allen (livwoke.com, livwoke@gmail.com)

How can people reach you? ncolvin@oaesv.org

This I Believe

By A’niya Williams, high school senior

I believe in independence, self love and equality. All through elementary and middle school I got bullied and people would pick fights with me for whatever reason I didn’t understand because I was always so quiet. That made me very insecure and depressed. I never really talked to anyone about the issues I was having because I felt like no one could help. When I got to high school I got a new start, and started to see my value, and what I am capable of. This is why self love is so important because if you love and respect yourself, nobody can tell you different. Self love is also not letting another person’s needs come before yours, and not settling. I believe this is very important because if you don’t love yourself it is very hard to love someone else. 

When I was younger I was alway more on the dependent side. When I started to get a little older and started having relationships I would depend on them to make me happy. Then when I moved away my whole attitude and perspective changed. I got a job and started to do as much as I could for myself so my mom could have a little less stress. Also it felt good to not have to ask for something that I wanted. 

I believe independence is important because you can’t always rely on someone to do everything for you, or make you happy. There is a time in everyone’s life where they have to go out into the world and live their own life. It is a really good feeling because you know u did it on your own. 

Lastly equality. Equality is very important to me because when I grew up there wasn’t a lot of it especially in school. Growing up in school as a minority was very hard. I was one of few mixed/ black race at my schools. Teachers would treat me differently and I never really put the pieces together until later in my life. I believe equality in the USA is fake and it’s just here to make people think everything is equal. In reality nothing is equal, because no one is given the same thing when they are put on this earth. Equality is very important to me because it is a right that everyone should be given. 

This is an image of three heart shapes hanging from strings.

The Importance of Disability Awareness for Change

This image shows a meter from Low, Moderate, High, Maximum measuring the level of awareness. The red dial is on maximum awareness.
This image shows a meter measuring the level of awareness from low, moderate, high, to maximum. The red dial appears to be moving quickly on maximum awareness.

March is disability awareness month in Indiana and Indiana Disability Justice realizes that awareness is a great first step to improve the lives of people with disabilities. Awareness is important because we need to acknowledge ableism and the discrimination that people with disabilities face so that we can reduce and eliminate them. The awareness that people with disabilities are just as human as anyone else is necessary in order to fully include people into our society, communities, workplaces, neighborhoods, and peer groups. Even though we need more than awareness, awareness is a factor in ending violence against people with disabilities. With all this in mind, IDJ will be publishing different kinds of artistic pieces that showcases the perspectives of disabled people. Some of these pieces will relate directly to disabilities. However, some of them will not have anything to do with disability. This is because some of our artists want to remind us that they are more than their disabilities. Please visit us often to grow your perspective!

Post credit: Jody Powers, IDJ Hub Coordinator and IDJ Leadership Action Team member and Cierra Olivia Thomas Williams, IDJ Co-Leader and IDJ Leadership Action Team member