For people who have a disability that severely limits their independence, caregivers serve a very vital role. A caregiver can be a friend, a relative, or a paid attendant assigned by an agency who attends to the needs of a child or dependent adult. Attendants may or may not be trained and, if paid, may be full or part time and may even live in the household or sleep over several nights during the week.
The Family Caregiver Alliance states:
“Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months. [National Alliance for Caregiving and AARP.]
Approximately 39.8 million caregivers provide care to adults (aged 18+) with a disability or illness or 16.6% of Americans. [Coughlin, J. (2010). Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management.]
About 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.]”
Along with performing household chores, providing transportation, doing the shopping, and performing personal care, many caregivers are also involved in administering injections and medications, as well as other medical treatments. Providing this care can be stressful and especially, for friends and family, can contribute to depression and serious illness.
If the person receiving care has medical or other equipment, the caregiver’s role is expanded as they learn how to operate, maintain, and even repair the equipment. With the advent of mobile devices, apps, mobile services (such as mobile banking), web services, and computer accounts, caregivers have been forced to adopt another role…that of tech support.
The Family Caregiver Alliance described the following:
70% of working caregivers suffer work-related difficulties due to their dual roles. Many caregivers feel they have no choice about taking on caregiving responsibilities (49%). This sense of obligation is even higher in caregivers that provide 21 or more hours of care per week (59%) and live-in caregivers (64%). 60% of caregivers in 2015 were employed at one point while also caregiving. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
The lower the income and education a person has, the more likely he or she is a caregiver. Similarly, those with a high school education or less (20%) take on a caregiver role versus 15% of college graduates and 16% of postgraduates. [Gallup-Healthways. (2011). Gallup-Healthways Well-Being Survey: More Than One in Six American Workers Also Act as Caregivers.]
In short, caring for a person’s physical well being and health is already difficult enough before adding the challenge of providing technical support with no formal training.
These devices include things such as smart thermostats, cameras, door locks, and doorbells that allows a person to turn the lights off, see outside their house, answer the front door, unlock the door, or even control the television just by using their voice, smart pad, smart phone, or other devices adapted to their disability. Given that these devices are relatively inexpensive, widely available, and easy to use, they are being adopted at a fast pace. A person may not own a smart speaker, but they may recognize an Amazon Echo (with the Alexa voice assistant) or the Google home smart speakers.
Smart phones, tablets, and speakers can allow a person with a disability to perform tasks from their home by using just their voice or text to speech. However, depending on the capabilities of the person, the caregiver may now have to assist a person with their technology. The caregiver tech support falls into 4 areas: Online Security, Device Networking, Installation and Troubleshooting. This creates new challenges in the following ways:
- Online Security: For those whose disability prevents them from
using their hands to write or type, they often must share their passwords to
have the caregiver log them into their service or device.
- Scenario: The caregiver sets up a new smart phone for the person they assist. The person with the disability is intimidated by the technology, and the caregiver takes it upon themselves to create the new online account (choosing from one of the 4 email accounts belonging to the person with the disability). The caregiver creates the password and does not write it down. The person with the disability care doesn’t ask for the password to be recorded. To setup the apps, which may include online banking, email, Amazon account and Comcast, the caregiver was given the login for everything. Seven months later, the caregiver has a falling out with the family. The caregiver walks away with complete control and access to the banking, Comcast account, Amazon account (for purchasing) and even the phone account. A few months later, the person with a disability purchases a new phone and gives their old phone to a friend, who wipes it. The person tells the new caregiver to setup the new phone for them. Not understanding how iPhone are linked to an iCloud account, they both discover that they had no access to email accounts, backups (to setup the new phone) or even the banking and credit card accounts. When the bank and credit card companies are contacted, the care recipient does not know the answer to security challenge questions or logins.
- Networking: To maintain the connection to
the Internet, some people receiving care are dependent on their care givers to
ensure that the router in their house is functioning properly. Tasks could
include interfacing with the provider (such as Comcast), rebooting the router,
checking the connectivity of devices attached to hubs, and ensuring that the
devices have not been changed or tampered with in such a way that the smart
devices no longer functions.
- Scenario: The person with the disability receives an Echo (Alexa), four smart light bulbs and a hub to connect the lights. With smart light bulbs, the power (switch) must always be left on and the bulb can only be turned off using the app or by issuing a voice command. A nurse comes over during a regular visit, physically switches off the lamp (with the smart light bulb), and unplugs it when using medical equipment. The night shift caregiver returns after the nurse’s visit. While in bed, the person with the disability attempts to tell Alexa to turn on the lamp and discovers the light doesn’t work. The night caregiver does not understand the technology, so she changes the bulb (throwing out the smart bulb), tries to turn on the lamp and finds out it still is not working. She checks the plug, plugs the lamp in and the light comes on. Everyone thinks the light is working. When the person falls asleep the caregiver turns the light off using the switch on the lamp. As part of her morning routine, the night caregiver takes out the trash and the morning shift caregiver arrives. When the person with the disability tries to command the light to turn on, it doesn’t work. They become distraught that the light is not working and, to assist, the caregiver begins changing setting in the app to the point that the other lights no longer work. Eventually, the original installer must be contracted to fix the system and a new smart bulb must be purchased and setup.
- Installation: The person receiving care
may purchase or receive a new device with no professional or experienced installer
to set it up. They will depend on their
caregiver to follow the instructions which can include: unpackaging the device,
attaching the device on WiFi (or a hub), creating a cloud account and login for
the device, activation of services, setting of specifications and training the
person receiving the care how they can use the device. Finally, they must ensure
the device is placed where it will perform optimally (for example the Amazon
Echo must be placed where it can be seen and is in earshot to hear the
commands).
- Scenario: While the family has a paid caregiver during the morning and afternoon, various family members provide the care at night depending on availability. As devices are added, each family member uses their own email and login account. When there is a problem with the system, it is impossible for the paid caregiver to assist and the next day, many calls must be made to figure out the login accounts before the actual problem can be solved.
- Troubleshooting: A device may fail,
someone may unintentionally turn off a device, a device may lose connection to
its hub, or the Internet connection may go down. The caregiver may be called on to test the device
and figure out how to reactivate it. If
customer support is contacted on the phone the caregiver may be the person
making the call, rebooting the router, communicating what the notifications
lights are showing or moving a device to a better position for reception.
- Scenario: The person with the disability is very comfortable with technology and understands how everything work. Unfortunately, the person’s wife had the router installed on the second floor. The caregiver is very uncomfortable with technology and English is not their first language. When Wi-Fi goes down, the person receiving the care makes the call to Verizon. The technician on the call askes that the router be rebooted and wants to know when certain lights blink. The caregiver is sent upstairs, and frustration ensues as the caregiver does not understand what he is being asked to do as the care receiver is yelling at him from downstairs.
These scenarios are just some of the situations that can occur when caregivers are asked to provide technical support. While some are very comfortable doing so, most are finding a job that can already be stressful to be even more complicated. And while their responsibilities have grown, if they are paid, their pay has not increased.
While it is impossible to prepare for every situation, the following recommendations should be considered if technology is a part of or is going to be introduced into the general environment of a person living with a severe disability.
- It takes a team: Many people with a
disability have their own unique human resources and one cannot generalize the
knowledge base of the person (attendant, family member, friend) who is
providing assistance. For example, a
young adult who was injured and paralyzed may have his father or an attendant
handling the primary care, while the mother focuses on accessing services and
the finances (state programs and grants/medical bills/etc.). The older brother
is better with technology and takes care of the phone and devices that his
brother uses. In order for a person with
a serious disability to live independently, family members, friends, or paid
attendant must be willing to take on varying roles to support that person.
- Someone is managing the personal information – This may be the person with the disability, a family member, a friend or even a paid support person who is trusted. This person should, if possible, form a plan of how to manage the personal information. Besides information such as a birth certificate, Social Security card, medical records, and other legal/financial information, technology related information should also be managed with equal importance. Accounts, Login ID’s and other Internet cloud information should be kept in a secured journal (whether it is an online journal such as “Notes” on an iPhone or Windows computer or a spiral notebook). This journal should be backed up every so often, depending on resources. Sometimes one cannot get around giving a caregiver their login information if the ability to enter it personally is not possible. However, keeping control of this information will make it easier to protect, fix or adjust a data breach. If the caregiver is trusted the information can be written on a paper and tacked to a wall so that another caregiver can quickly access the information. Also, schedule regular dates to access apps and devices and the accounts being used. Often people are excited about new services or devices and fly through creating the accounts. Later, when asked what password is used, no one remembers, and the service can end up being locked, unusable and lost.
- Someone handled the procurement – In the case of durable medical equipment, smart-home/home automation, a new cell phone or tablet, Internet service or other technology, someone handled the selection and purchase. In the same journal/information sheet mentioned before, the name and contact info. of the primary purchaser along with the name and contact number of the services should be kept together. Everyone providing care, including the person with the disability should know how to contact customer/technical support for all the technology. If possible, a family member or friend should more actively take control of being the main technical support person who understands at least some of how everything works. That same person should be present when new technology is introduced. Many young people, since they are growing up with these technologies, are a great resource to use.
- When the caregiver is being paid – It is highly likely a paid caregiver will, at some point, move on. Further, unless technical support was part of their job description, it is not fair or prudent to rely on them technically, to the point where the person receiving care has their lifestyle, online security, independence or tools imperiled by the loss of an employee. Smart home devices can have a dramatic impact on the life on someone who want to maintain independence. This technology can be a vital part of a person’s life and must be guarded and wisely supported.
Suria’s right hand controls a track ball, which is an adaptive mouse that allows her to
