The nation was shocked earlier this year when cell phone videos emerged showing employees at a Texas institution forcing residents with disabilities to fight each other in an overnight “fight club.” While extreme, the circumstances at that Texas facility are not isolated.
Incidents of violence, abuse and neglect are far more common among people with developmental disabilities than those in the general population. By educating people about their rights and putting safety plans into place, this cycle of victimization can be halted, says Nancy Fitzsimons, an associate professor of social work at Minnesota State University, Mankato who specializes in abuse prevention for people with disabilities.
Disability Scoop: How widespread is violence, abuse or neglect among people with developmental disabilities?
Nancy Fitzsimons: We don’t have definitive data. There are two ways we collect national crime statistics: the uniform crime report, which is crime reported to local law enforcement, and the national crime victimization survey where people are called and asked whether they have been a victim of a crime. In both of cases, disability isn’t asked specifically.
There is information about hate crimes and about 1 percent are committed against people with disabilities. Beyond that, we have a lot of smaller studies. Collectively they give us a pretty good indication that people with disabilities are victimized at higher rates than people without disabilities. And people with developmental disabilities appear to be victims of violence and abuse at rates higher than people with other types of disabilities as well as in the rest of the population.
Disability Scoop: How serious is the situation?
Nancy Fitzsimons: This is absolutely a big problem that we should be concerned about. It seems to be pretty clear that people with developmental disabilities experience sexual violence, physical violence and other forms of violence and abuse at much higher rates than other people.
We know that most crimes are underreported anyway, whether or not it involves a person with a disability. So most likely, the data we are looking at is an underrepresentation. A lot of this has to do with the barriers that exist for people with disabilities in terms of being able to access systems that are supposed to be there to benefit them.
There’s also the issue of believability. Oftentimes when reports are made concerning people with disabilities and developmental disabilities in particular, there are questions about whether or not the person making the report is credible. Another area that impacts the data we have is that oftentimes when crimes are committed against adults with developmental disabilities, it’s the adult protection system that investigates these instances, so these crimes don’t get reported.
Disability Scoop: In what types of situations are people with developmental disabilities most vulnerable?
Nancy Fitzsimons: Whether you have a disability or not, you’re more likely to be a victim of a crime by someone you know rather than a stranger. For people with disabilities, that typically means family members, paid and non-paid care providers as opposed to strangers. One of the added vulnerabilities is that people with disabilities oftentimes have more care providers, paid or unpaid, who are involved in their services. So, the increased vulnerability has to do with the array of supports and services and the number of people who are involved in their care.
Disability Scoop: What steps can people with developmental disabilities take to keep themselves safe?
Nancy Fitzsimons: Here are some things you can do:
- Self Advocacy: The more people are involved and engaged in self-advocacy types of programs that empower them to learn about their rights and the systems there to protect them, the better they will be able to protect and advocate for themselves.
- Education: Learn to identify situations that put you at risk. We need to make sure people know and can identify what physical abuse is, what financial abuse is, what sexual abuse is. Oftentimes people don’t know that how they’re being treated is abusive or that how they’re being treated is a criminal offense. We need to make sure that people understand what various terms mean. What exactly are people doing that is physically abusive? What does it look like? What does it feel like? What does it mean? We really have to give people the information and tools to know what mistreatment looks and feels like. Then, we have to help people learn what positive, mutually respectful relationships look like and feel like.
- Intuition: We need to help people understand both the signs in their environment as well as the signs in their bodies if they donâ€™t feel safe. Maybe your heart starts to race or your hands are clammy. Maybe you start sweating or your stomach feels upset and you start to feel kind of queasy. Sometimes our bodies know before our brain knows.
- Develop a Safety Plan: A safety plan helps a person understand what to do when you’re being abused or feeling unsafe. Where do you go and who do you turn to when you’re at work? Where do you go and who do you turn to at your home? Some of it is what to do in the immediate moment of a crisis or an emergency and some of it is what to do when you have some time to think and plan and you realize that you’re not in a good situation. There are some great resources out there that can be used and adapted to create some very simple safety plans. The Wisconsin Coalition Against Domestic Violence has some books about safety planning. One is for people with cognitive disabilities and the other is for people with physical disabilities. You can adapt these guides to develop your own personal safety plan.
- Identify Safe People: Who can you call when you know that you are not feeling safe? Everyone should have at least one person they know that they can turn to and trust. We also talk about developing a secret code or word that you can use that lets your safe people know that you’re feeling unsafe. Sometimes people are in a situation where the abuser or the person they’re afraid of may be present or may be controlling them, so they don’t feel free to be able to tell, but you can have a very generic secret word or a secret couple of words, something you can say so that safe person will know you’re in danger.
Disability Scoop: What can parents or caregivers do to ensure a good, safe environment for an individual with developmental disabilities?
Nancy Fitzsimons: We are all potential victims of some type of crime. The idea is, how do you maximize safety? Try to assess a person’s level of vulnerability. What are the protective factors, or strengths of the individual with disabilities, and what are their vulnerabilities? Some people have many more strengths. Some people have many more vulnerabilities.
Then, look at the people providing the supports and care. It’s important that we have background checks. Use your sixth sense or intuition. If you’re looking at hiring someone to care for a person and you don’t feel comfortable around them — maybe they talk about people with disabilities in a way that is either overtly demeaning or seems like they have a negative attitude — you should trust that. You want to watch out for people who have a need to have a lot of control. That’s where the interviews become really important. Give people scenarios, situations and say, “how would you handle this?” Give them enough so you can get a sense of how the person thinks. Is this a rules and regulations person? Is this somebody who thinks they’re coming in as a surrogate parent, somebody to take charge and make sure this person is doing what they’re supposed to do? You can get a sense of who that person is, how they’re going to approach this work and what kind of support they can provide.
If you are working with an organization or an agency, try to find out about who exactly they are, how it works, how it operates. You want to know what their history is and how involved consumers are in the organization. What do they really believe? How much training is provided?
Disability Scoop: As a parent or caregiver, how can you balance safety concerns with a need for independence as an individual with a disability grows up?
Nancy Fitzsimons: It’s a difficult line to walk. But one of the things that we really make a big mistake in doing is trying to overprotect people with disabilities by not giving them information, by not helping them to understand, by not giving them opportunities. The more you isolate people, the less they have opportunities to interact in the world and be able to encounter all kinds of situations.
So, as parents, it’s best to start gradually and give them greater opportunities and greater degrees of independence. At the same time we want to give people information about what to do if they are victimized so that if something happens they know they can tell and we’ll address it and deal with it now.
Overprotection doesn’t keep people safe. It makes people more vulnerable. It doesn’t work when we rely on other people and other systems.
Disability Scoop: What signs of trouble should you be on the lookout for?
Nancy Fitzsimons: The indicators are common among child abuse or elder abuse or people with disabilities.
- Physical Abuse: Look for things like imprint marks. Does it look like somebody grabbed and you can see four fingers and a thumb around somebody’s arm or around somebody’s neck? Look for places on the body where it’s difficult to bruise — the inner thighs, the back, the stomach. Look for lots of bruising and bruising at different stages of healing. The other thing is to really think about when someone is trying to explain away physical markings on someone’s body. Does the story really sound plausible or credible? Remember that if somebody has a challenge communicating, it’s easy for a care provider to make up a story and lie. A medical doctor or forensics expert can take a look at injuries and give some indication as to what might have caused it.
- Sexual Abuse: If someone develops a sexually transmitted disease, becomes pregnant or if a woman develops frequent urinary tract infections, these could be signs of sexual abuse. Also, sometimes we see people regressing into more childlike behaviors. You may see bed wetting that someone had never done before. People may also withdraw or isolate. Sometimes people will make what’s called a coded disclosure. They’re going to check what your response is going to be if they tell you that somebody is hurting them. Based upon your reaction, they’re going to make a decision about whether or not they can tell you. If you’re picking up on somebody hinting that somebody might be hurting or abusing them, then pay attention and ask questions and try to find out more.
- Neglect: You may see that a whole family is in a state of neglect. The home itself may be in a poor condition. Everyone may have poor hygiene. But it’s different when you encounter a situation with a person with a disability where clearly the standard of care and hygiene is dramatically different for that person than the caregiver or others in the environment. That is a sign that that person’s care is being neglected. When going into a home situation, you want to go into people’s bedrooms to see if the room where this person with the developmental disability sleeps and spends their time is different. Also, watch out for medical or health conditions. Sometimes this can be because of deteriorating health, but sometimes it’s a sign of neglect. People may not be getting their medication as prescribed or they aren’t getting their physical or occupational therapy or other kinds of medical attention as prescribed, so it becomes important to know the health history and the health needs of the individual. Especially if someone was at one time robust and healthy and then all the sudden deteriorates down to a bad situation, that could be a sign of neglect.
Disability Scoop: What can caregivers do everyday to keep the lines of communication open so that they will notice if a change occurs?
Nancy Fitzsimons: Think about language. We have all these terms for body parts and things like sexual assault, but if you’re not using the right language and you say, “is anybody hurting you?” They may say, “oh no, nobody hurts me.” Then, later on in the conversation they may say that somebody hit them. There’s a different word that they use. Hurt may not mean hit. We have to remember that the words we use may not be the words they use.
I get most worried about people who operate their lives within one system. There are no check and balances. Rather, if somebody lives at home but is involved in a work type activity, then there is more than one person who checks in on the person. Also, we want to make sure that the individual has time alone to spend with a family member as opposed to always having paid care providers around so that they can talk with them and find out about what is going on in their life.
Disability Scoop: If you’re a person with a disability, how can you identify a sticky situation and what should you do if you find yourself in one?
Nancy Fitzsimons: Learn to trust how you’re feeling. If you feel afraid or scared or nervous — whatever term people use — then trust that and know that you’re not safe. You need to get out of that situation, out of that place.
The other part is, who are the people that you do trust who you can turn to for help? Where can you go? I think this goes back to the safety plan. You’ve got to have a plan B. If you take the bus to work and somebody is bothering you on the bus, what do you do? It’s okay to say no, get away from me. It’s okay to get up and move. It’s okay to be assertive.
Recognize that there are some situations that people get into where they’re perhaps powerless. But as soon as you can, you get out of that situation and tell somebody so they can make sure that person doesn’t hurt you again.
Nancy Fitzsimons is the author of Combating Violence and Abuse of People with Disabilities: A Call to Action.