News

When a child is sick and can’t attend daycare or school, parents have to have a backup plan for who’s going to care for the child. When a vehicle breaks down, people have to figure out how to get to and from places. When an employee calls in sick for work, the employer has to come up with a plan how to make sure that whatever is needed gets completed for the day. When you get locked out of your house or vehicle, people normally have a spare key hidden somewhere. What do all these scenarios have in common? They’re all backup plans. People have backup plans for all sorts of things in life. Backup plans are meant for when the unexpected happens. Whether it’s a teacher having lesson plans ready for a substitute or having Power of Attorney paperwork prepared for a loved one, having plans in place for when the unexpected happens, not only does it give people peace of mind, it also makes things a lot easier when an emergency occurs.

People who have some extra challenges to navigate often have backup plans in place for multiple things that most people never even think about. Recently, I had problems with my electronic door to my individual apartment. I have two openers—one on my wheelchair and the other one is mounted on a little table that’s on my bed. The openers started not opening the door pretty frequently. Obviously, that poses a problem when you have to let caregivers in—especially in the morning when I’m stuck in bed. If caregivers can’t get in, I’m not getting up. It’s as simple as that. So, as a backup, there is key box outside of my door. My workers now know the code for the box in case the electronic door isn’t working. This is also mandated to have by the housing authority and fire department in case of an emergency.

Key boxes are far from the only backup system I have. As I’ve touched on in previous entries, when pieces of durable medical equipment (DME) breaks or stops working, people who rely on them often have to have a backup plan. There are certain pieces of equipment that people rely on to live. Some people rely on things like a ventilator or a feeding pump to survive. I can’t speak for sure, but I’m assuming that people who rely on those types of things have backup equipment in case of emergency.

While, I’m fortunate not to rely on equipment truly detrimental to my physical ability to breathe or eat, I have some equipment that I depend on to be functional and independent. When my electronic Hoyer lift stops working, caregivers aren’t able to transfer me. A few months ago, it started being glitchy—it would start and stop. It was nerve wracking for me because if it stopped working, my caregivers wouldn’t be able to take care of me. It began happening more and more frequently, so my parents brought up the manual lift that I have at their house. My dad took the electronic lift back to their house to try to replicate the problem, but, of course, it worked perfectly fine the hundreds of times he tried it. To ease my mind, I currently have both lifts in my apartment. It’s the same thing with my electronic wheelchair. If/when it breaks down, I’m unable to move around independently. Like I discussed in previous entries, power wheelchairs are often customized, so it’s not like I can just use any rental chair my DME provider has around. It doesn’t always work out, but, fortunately, I currently have my old wheelchair in my apartment I can use for backup. It has come in handy more than once.

For people with disabilities who require care, backup plans are essential. Most long-term care programs require participants to have backup plans. Unfortunately, due to the long-term care system as a whole being inadequate, the care portion of the backup plan usually falls on families. This begs questions like: what happens when a person doesn’t have any family or what happens when families can’t take care of the person? Questions like these are what keeps many families—including mine—up at night. As I’ve talked about before, even though I’ve recently been on a really good streak of caregivers for about a year now, I realize that my time living independently is likely limited. I’m fortunate that my parents are still able and willing to be my backup caregivers. That said, I’m well-aware that they aren’t getting any younger. I’m the first to admit that we don’t have a backup plan for when the time comes when they aren’t able to help me anymore. Why, you may ask? Simply put, there aren’t any good options. I’m lucky to have a good relationship with my sister, and she’ll help me figure things out. Obviously, I hope to be settled somewhere well before the time comes, but knowing that she’ll be there to help me figure things out is somewhat of a comfortable.

Obviously, there are many situations where you can’t have a backup plan for, but, as someone with high anxiety, having backup plans for multiple things that I depend, on brings me some comfort. Although, the backup plan may take longer or may not be ideal, it often eases our minds knowing that there is a plan in place if something happens. I know that I will always have backup plans for as much as possible in my life!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

The UW–Madison People & Robots Laboratory is looking for adults with Intellectual and Developmental Disabilities (IDD) to participate in a paid study about how people interact with security and privacy notifications. These notifications include examples like spam email warnings, unsecure website alerts, and cookie prompts on websites.

During the study, you will try five new apps made to help with these notifications. We will also ask you questions about your thoughts or ideas. 

To be eligible for this study, you must:

• have an Intellectual and Developmental Disability (IDD) * 

• be 18 years old or older.

• live in the USA, within driving distance of Madison, WI.

• communicate feedback on your experience verbally or through other means, such as an augmentative and alternative communication (AAC) device.

• be willing and able to participate in one 1.5-hour session with a support person.

Location: UW-Madison (Morgridge Hall); We are open to discussing other options, such as a local library.

Expected Duration: 1.5 hours

Payment: $40 for completing the study

Project PI: Dr. Bilge Mutlu (bmutlu@wisc.edu) and Dr. Rahul Chatterjee (rchatterjee4@wisc.edu)

Required: You will need to bring another person with you (e.g., a parent, guardian, caregiver, sibling, or other trusted person).

If you are interested in participating, please scan the QR code on the flyer I've attached or go to the following link: https://forms.gle/DLgz3AuHFknRnZed8. You can also email, text, or call Hailey at hljohnson22@wisc.edu or (608) 620-3463.

Our first meeting will be an online video call to ask you questions to ensure you are eligible for the study, complete informed consent, and schedule the in-person session.

	Accessible Technology Security for Adults with IDD Flyer
	Flyer.pdf, 751KB ∞

	Accessible Technology Security for Adults with IDD Information Sheet
	Information_Sheet.pdf, 95KB ∞

• Have an Intellectual and Developmental Disability (IDD)
• Be over age 18
• Have past or current work experience (paid or volunteer)
• Live in the USA, within a drivable distance from Madison, WI
• Be able to communicate feedback on technology verbally or through an augmentative and alternative communication (AAC) device
• Be able and willing to participate in a 1.5-hour session

• Location: UW-Madison Morgridge Hall
• Expected Duration: 1.5 hours
• Payment: $40 after completion
• Project PI: Dr. Bilge Mutlu (bmutlu@wisc.edu)
• Optional: Additional support individuals are welcome to join

	Robot Research Study information sheet
	Information_Sheet.pdf, 95KB ∞

	Robot Research Study Flyer
	Flyer.pdf, 751KB ∞