When you or a loved one has a disability or is aging, you may need to hire a caregiver. A caregiver can be a family member, personal care attendant, home health aide, nurse, school aide or CNA. No matter what their title, they have an essential and trusted role — to assist with someone’s personal needs and empower them to live a full life regardless of the physical or mental challenges they may face. It’s a job that gives someone the potential to do tremendous good, or cause tremendous harm. Unfortunately, people with disabilities are at high risk for abuse by a caregiver, and one in 10 people over 60 will be victims of elder abuse.
I have cerebral palsy and receive self-directed personal care attendant services funded by Medicaid. I’m able to choose my own personal care attendants and decide when, where, and how they will assist me. Most of my PCAs have been good people who worked hard and meant well, and I’m still in touch with some of them many years later. But a few exceptions have actively sought to abuse me or take advantage of me. I’ve had people steal from me several times, and in 2005 a PCA forged $5000 worth of checks from my bank accounts. I pressed charges and she ended up with a felony conviction. I thought that would be the worst thing to ever happen to me involving a caregiver. I was wrong.
In November 2014, my worst nightmare came true. I was attacked in a home invasion robbery orchestrated by a PCA I had fired and committed by her boyfriend. Two days later I started receiving death threats and had to move for my own safety. The attacker and the fired PCA were eventually arrested and received long prison sentences, but my life has been forever changed.
Although what happened to me was especially horrible, every single person I know who needs a caregiver has experienced abuse or theft. We need to learn how to protect ourselves and take swift action if we are targeted. Here are some safety techniques to protect yourself from caregiver abuse, as well as how to respond if someone takes advantage of you.
1. Prevention is the best method of protecting yourself from abuse.
Some predators see people with disabilities as vulnerable potential victims. Your first and best defense against them is to keep them out of your life in the first place. From the beginning, present yourself as an alert, competent person with a strong support system. You want to show them you’re a lousy target, so they’ll move on in search of easier prey.
2. Screen potential job candidates thoroughly.
Although Medicaid programs and agencies do a background check, don’t just take their word for it that a person is safe to hire. Research job applicants yourself. Do a background check on the applicant and their spouse or partner. If you see anything that concerns you about either of them, move on to the next candidate.
Check out applicants’ social media. What does it say about them? Do they seem like someone you’ll get along with? Do they seem like they have their life together? If you see lots of personal drama on their public profiles, that’s a big red flag.
Look for low risk candidates with markers of stability like a smartphone and a car. I like to hire college students because they tend to be kind, intelligent and enthusiastic. Many of them are studying to be nurses or physical therapists and they want to understand disability. They usually have a great work ethic and they rarely steal. Other good candidates are married moms going back to work after being a stay at home parent, military spouses and others who need a job but aren’t desperate for a job. Look for someone who wants to be a PCA and/or genuinely likes you, not somebody who will take any job that comes along.
3. Your safety and your needs come first. Always.
When interviewing job candidates and even after hiring someone, trust your gut. If something feels “off” about a person, if you’re not comfortable with them but can’t say why, believe that little voice inside. Don’t hire them, or if you’ve already hired them and then get a bad feeling, be extra-vigilant and do some additional investigating. It could mean they’re not enthusiastic about the job and plan to slack off or quit. It could mean they plan to steal from or abuse you. I guarantee it means something bad.
Remember you’re employing someone to make your life better, not running a charity. Don’t hire someone whose life is a mess because you feel sorry for them or think you can fix them. I’ve done this before and it almost always ends in disaster. I’m sure some people will read this and say “you should give the recently homeless addict a second chance” or “don’t blame the woman whose boyfriend just got out of prison for his behavior.” Yes, people deserve second chances, but it is not your responsibility to be that second chance.
Caregiver jobs are not appropriate for someone whose life is unstable. The person you hire will be helping you in very personal situations. You will be physically vulnerable. You don’t want to hire someone who can go home and tell her felon boyfriend about your new computer, or who slips after just a few months in recovery and comes to work drunk or overdoses in your bathroom. Protect yourself by avoiding those who might consider you a target, or who may mean well but are struggling with their own personal demons.
4. Don’t hire someone out of desperation.
I think most people with significant disabilities have been in the situation of badly needing assistance but struggling to find the right job candidate. I have learned through experience that this is when we are most vulnerable. We become tempted to lower our standards because we need someone, anyone, who can help us get dressed and use the bathroom. This is when you’re at highest risk of bringing in someone who may abuse you, and will very likely be a bad employee. This is when it’s crucial to take any and all steps possible to protect yourself.
Cultivate and nurture a backup support system — a few former assistants, friends and/or relatives who can help in an emergency until you can get someone good. If you absolutely must hire someone because the alternative is serious harm to your health and safety, be extra vigilant about the new employee. Make sure you implement all of these safety steps. Don’t commit to the person you’ve hired out of desperation; make it clear they’re employed on a trial basis. Perhaps you’ll be lucky and they will work out, but in the meantime you can continue to search for a candidate who meets your standards.
All but one of the most problematic assistants I’ve had have been desperation hires. I’m curious if others have had the same experience. Please let me know in the comments.
5. Set high expectations for your caregivers.
People who plan to abuse or take advantage of you don’t want to work hard. Give your caregivers a checklist of tasks from day one and make sure they get their work done. Make it clear that anything and everything which is safe and legal may be part of their job description. I am continually shocked by the number of people with disabilities who talk about how their caregivers refuse to cook the food they want, don’t clean their houses, sit around on their phones all day, and otherwise fail to show basic care or respect. These don’t-caregivers engage in these behaviors because they are allowed to do so, or think they can get away with it.
Don’t put up with being mistreated. You may not be able to fire someone instantly, but remind yourself every day that this employee is not meeting the standards you have a right to expect. Begin the search for someone new immediately, and don’t stop until you find a caregiver who treats you with the respect you deserve.
You should treat your employees with respect and concern for their well-being, but don’t put up with behavior you’re uncomfortable with just to be nice. People with disabilities are socialized to be polite and compliant. We are often told we should be grateful for any help we receive, and that whatever people choose to give us is good enough. I say fuck that. You shouldn’t settle for less because you have a disability, especially when it comes to your own safety and getting proper care in your own home.
6. Install security cameras and a smart lock.
Smart gadgets can be expensive, but they’re the best way to protect yourself from abuse because they keep a record of what’s happening in your home. I recommend getting a cloud connected security camera with a 30 day storage subscription. Thankfully, there are many more affordable cameras now — as low as $30, although the more reliable ones tend to run around $160. Set up the camera wherever you are most concerned about safety. I recommend pointing it at the area where you keep your money and/or other valuables. It’s also a good idea to aim a camera at your front door so you can see who is coming and going, and in the main area where your PCAs work to make sure they’re not slacking off.
In general, you shouldn’t hide cameras from your PCAs. The simple presence of a camera will help keep them accountable. I tell them up front that I almost never look at the recordings unless there’s a problem. I’m not trying to be creepy and spy on them, I just want a record in case something happens.
A smart lock is an ideal way to manage access to your home. It’s a motorized device that attaches to your deadbolt, uses Bluetooth and/or Wi-Fi to connect to visitors’ smart phones and allows authorized users to enter. It sends notifications when someone enters or exits, so you can monitor their schedules whether you’re home or out of town. You can easily add and remove users, so there is little risk of forgetting to remove someone’s access when they stop working for you. There are no keys they can copy or security codes they can share.
It should go without saying, but if somebody has a problem with your cameras or smart lock, don’t hire them.
7. Secure your valuables.
Most caregiver theft is opportunistic. You don’t have to turn your home into Fort Knox to protect yourself. If you’re just trying to keep checks and a bit of cash away from sticky fingers, a lock box will do. Aim a security camera at the lock box so you’ll know if anyone tries to tamper with it. I’ve noticed that jewelry is a common target for thieving PCAs, even if the jewelry isn’t valuable. When I was attacked, the intruder went straight for my bathroom where I kept my jewelry, even though I didn’t own any diamonds or other precious stones. If you do have significant valuables, get a safety deposit box at a bank. It’s best if people don’t even know you have those items.
8. Be cautious about who you trust with financial matters.
To reduce the risk of financial abuse, don’t allow new caregivers to use your debit or credit cards. Send them to the store with just enough cash to get whatever you need. Eventually you can trust them with your PIN number, but always insist on getting a paper receipt for any transactions. Login to your online banking and make sure the money spent matches the receipts. Again, this isn’t something you should keep hidden from your employees. Let them know you need receipts so you can keep track of your account, and it will act as a natural deterrent to them misusing your funds.
9. Learn the signs of abuse — they’re not always what you think.
Many people think “abuse” means physical or sexual violence, but it encompasses much more than that. In fact, “smart” abusers are more likely to avoid overt violence and instead use subtle psychological and emotional manipulation to control their victims. Take a look at the Disability Power and Control Wheel — if anything on it sounds familiar, it’s time to remove that caregiver from your life.
Need a text description of the power and control wheel? Click here.
Learn about the cycle of abuse and the signs of coercive control. Here are some examples of how coercive control can look in a disabled person/caregiver relationship:
Body-shaming — the caregiver describes you as fat, ugly, or helpless and therefore incapable of going out, working, finding love etc.
Controlling appearance/behavior — the caregiver pressures you to change things about yourself for other people’s (read: their) “convenience,” such as cut your hair, wear loose clothes or other items you dislike because they are “easier” to take on and off, take medication to stop menstruation etc.
Restricting your activities — the caregiver discourages you from going out or refuses to take you places because it’s “too hard.” This could also include refusing to bathe you as often as you want, help you to the bathroom etc. They may systematically control your most basic activities at home, for example refusing to cook food you like or setting your home’s temperature too hot or cold.
Taking your mobility — the caregiver restricts access to your mobility device, or only allows you to use a device that significantly limits you — for example placing you in a manual wheelchair even though you can’t push yourself and denying access to your power wheelchair. They could also withhold or break assistive technology such as a computer, or put your cell phone out of reach so you can’t communicate with loved ones.
Financial exploitation — the caregiver frequently asks to be paid in advance, or demands extra money despite not working extra hours. They might also buy personal items with your money, slip small amounts of cash from your wallet or get credit cards in your name. If caught, they may imply or claim they “deserve” these extras for their “hard work.”
Gaslighting — the caregiver dismisses you as “crazy” or tells you that you’re “asking too much” for calling out abusive behavior and expecting to be treated with respect.
Hero complex — the caregiver tells you that you should be grateful to have them because no one else would put up with you.
In reality, you’re the one putting up with them, and you shouldn’t. Don’t compromise your own identity and integrity because of someone else’s laziness or inflexibility. Don’t keep someone who thinks you’re ugly or incapable in your life. They are the ugly ones. You are beautiful, and with supportive carers, you can soar.
For more examples of coercive control in relationships when someone has a disability, please read my story of surviving domestic violence.
10. Develop a support system.
Make sure your personal care attendants know you have family and friends who love you. Make sure they know about your FBI agent uncle or your brother who loves his gun collection. Post photos in your home of these relatives and have your workers meet them if possible. If you don’t have anyone like this, go to an event and get a police officer, firefighter or other authority figure to pose for a selfie with you. Put the photo on your wall, tell your caregivers that’s your cousin and they will think twice before committing a crime against you.
If you don’t have local friends and family, an online support system can still help you. Use video chat to talk to loved ones while caregivers are present, so they know you have someone who cares.
11. Treat your caregivers well.
No person deserves to be the victim of abuse, but showing respect and kindness towards your employees will usually earn you the same in return. Looking out for your safety and well-being doesn’t mean you need to treat people with constant suspicion. Focus on building a positive relationship with each of your caregivers. Say please and thank you. Listen to what they have to say. Ask them about their families, friends and lives and share things about your own life. Even small gestures can show your appreciation. Take them out for a meal or buy them a small gift. It’s not about the amount spent, it’s about showing them you appreciate their hard work.
12. If you have to fire a caregiver, increase your security measures.
Let them go politely over the phone, not when they’re at your house. Immediately remove their access to your home — delete them from your smart lock, change your key code or get your lock replaced. Even if they were not abusive, don’t trust them. I would never have suspected the quiet, apparently harmless young woman I let go would send someone to attack me at gunpoint.
13. If someone commits a crime against you, go to the police and insist on pressing charges.
Many crimes against people with disabilities go unreported. It’s time to change that. Contact the police and behave with the expectation that they will take you seriously. Try to stay calm and give them just the facts. If you’re not in immediate danger, take time to organize your thoughts and assemble your evidence before calling or going to the station.
If someone is committing a crime against a person with a disability, they are a dangerous predator. They must be held accountable for their actions, or they will do it to someone else. Many states allow offenders who abuse someone with a disability to be charged with exploiting a dependent adult, or even with a hate crime. Insist that the police and/or prosecutor pursue these charges. You want to make sure this person ends up with a record of harming people with disabilities so they cannot work as a caregiver in the future.
Following these steps can help you protect yourself in your home if you need personal care assistants. Unfortunately as people with disabilities, we will always be at risk, but together we can fight against caregiver abuse. Stay safe!
Stock photo by Pixabay / Shadow Fire Arts.
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