Imagine your smart phone was taken away during a global pandemic

The global pandemic shines a spotlight on the Great Digital Divide. 

While many of us wax poetic about the wonders of Zoom, Google Hangout, Face Time  and social media to keep us connected with co-workers, family and friends, there is a whole cohort of our society who experiences the uber-marginalization of technology access.  For example, 50 million children in America were locked-down to be “home schooled” but  millions, do not have access to technology or WiFi.   

But for those with severe mental illness in our society, living in quasi-institutions or incarcerated, the gap is stunning.   Studies have shown the tendency toward digital exclusion among this population,  and our friends at The Painted Brain make a good argument that “digital access and literacy should be considered one of the social determinants of health.”

Here are two radical ideas to float until and unless someone makes an argument as to why either one or both of these is impractical or impossible.

1 Equip every board & care home, IMD, and any type of residential congregate living facility with WiFi and iPads, screens or smart phones for residents, along with training,  to facilitate access to the internet and to communicate with friends and loved ones.

2 Eliminate the exorbitant phone charges into and out of jails where people with mental illness are completely isolated from friends and family.

Again, I do not have a family member struggling in this system, so I am not as close to this frustration as many who follow this blog.  But here is what I am observing in my very limited world view:

Libraries are closed now for health protection. Could be a year before they allow people to touch keyboards – if ever?

My one friend that lives in a board & care home in Pico Rivera does not have access to a smart phone.  He calls me on the wall phone.  With the stay at home order in place, he cannot go to the library to check his email or access the internet.  His adult school, where he has been working on his GED for the last 15 months, has shut down because of coronavirus.  He used to attend a local church, which would send a van to pick up a group of their residents on Sunday morning.  That has now been suspended, and there is no opportunity to access a virtual church service given no connectivity where he lives.  To protect the residents (and I do not fault at all the hard working staff who are doing their best to keep people safe), the congregate dining room is off limits and residents are asked to eat their meals in their rooms

Be honest:  if you had to eat alone in your room every day, would you be scrolling through your social media page or texting to friends?  I would.

Pre-pandemic lockdown MOTH storytelling afternoon at a Hollywood board & care home

At another local board & care off Sunset Blvd,  my Hollywood church had initiated a project earlier this year, called “Kinship Afternoons” to forge a social connection between community members and the residents.   We had committed to hanging out with residents every other week, and our last Kinship Afternoon was on March 8, when we hosted a “MOTH-like” open mike storytelling session.  When the lock-down occurred, less than 10 days later, all our communications ceased.  It is just heartbreaking because we were beginning to create connections with the residents.  There is no opportunity to create a “Zoom” experience to connect because they do not have WiFi or a smart television where folks could gather (at a safe distance).  They are completely isolated. 

Be honest:  wouldn’t it be fun to do MOTH story telling via Zoom with friends?   

I’m following, “Broken,” the real time narrative shared by a mother of an adult son with treatment-resistant schizophrenia and substance abuse on Facebook.  I would encourage you to “like” this page and follow along as it will give you an intimate glimpse into the way in which families are marginalized from our system. In her words, “its not an easy read, but important.”

How can we deny Face Time for people living in psychiatric residential facilities?

Her son is currently living in a residential program, but because of covid, she is not allowed to visit him and he is not allowed to have a smart phone.  Imagine, no Face Time with her son.    The rationale, as I read these accounts, is that a patient might take a photo of someone and that would be an invasion of their privacy.  Here is a question:  if I have a baby, and am in the maternity ward of the hospital, am I allowed to have my smartphone with me?  Why should this be different?  Why are we more afraid of a photo being taken within a psychiatric residential facility as compared to a medical facility?  What is the worst thing that could happen and how does that outweigh the therapeutic benefit of staying connected to the outside world?

Be honest:  if you had to live somewhere for months and months without being visited, and you didn’t have a smart phone to play Words with Friends or Face Time your mother, where would you be emotionally?

In February, I had the opportunity to meet two amazing men who are mental health assistants in the Forensic Inpatient Program (FIP) in the mental health tower at LA County Twin Towers.  I was in the jail shadowing a chaplain, in preparation for my application to volunteer for the chaplain’s team.  These two assistants, who are inmates themselves, serve as inspiration to inmates in the FIP step down program to help prepare them for  re-entry on the outside.  I have been astonished at how utterly impossible it is to maintain meaningful communications with these two inmates.  In the past month:

  • I have signed up for a $45 Global Tel service which should allow them to call me collect, but I have yet to figure out how they can access it.  This service charges $.20/minute.
At 25 cents a minute, this makes it extremely expensive for families to stay connected in a meaningful way.
  • I somehow got duped into signing up for another service, which is GTL (same service different name?) and put $20 on that account only to have $3 immediately deducted for admin charges.  This service charges $.25 per minute.  When that got used up almost immediately, it seemed, I added another $35.  I am completely befuddled as to why I have two accounts right now and there is no easy way to seek clarification on this.**
  • I signed up for a postcard service through Global Tel, and that postcard was returned to my home.  It appeared that I did not put the inmate number on the card, but there was no box on the form which requested the inmate number.
  • When we do communicate, it is largely because they purchase five minute allotments of time to call me from their own limited funds.
  • In the past two weeks, it appears that they have been offered limited access to five-minute free calls because of the coronavirus (because visitation is suspended right now).  It is very hard to have a meaningful conversation in five minutes.

Be honest:  do you think you could truly find some emotional stability and confidence about returning to the world if you only had five minutes to talk to a loved one?

Social isolation is debilitating.  We are all experiencing this now first hand, some more than others, but I believe  this collective pandemic experience is opening our hearts to the anxiety and frustration and depression that can set in when you cannot communicate with those you love. 

Be honest:  It’s time to build the bridges that will eliminate the digital divide in our society. 

**As I was researching this blog, I stumbled upon article from this month about the “insidious games of the prison phone companies, masked by their generosity during the pandemic.”  The prison phone call system is a $1.2B/year industry, according to an article in the New York Times.  A worthy read; it puts everything I’ve experienced into perspective.  My heart breaks for families trying to stay connected with their loves ones in prisons and jails.

6 thoughts on “Imagine your smart phone was taken away during a global pandemic”

  1. My son is also in a residential in LA and he has a smart phone which I gave him to keep in touch. Same reason as your article that Zoom, FaceTime, or video chat was not allowed due to patients’ privacy.
    I find it absurd that they can do Zoom with Providers but not their own family. I find the isolation does chip away at their mental state.

    1. This is just infuriating to me. I would like to gather more of these stories…and then think about how we use this. Anyone who has felt their own emotional state lifted by zooming with friends and family has no leg to stand on when they argue why people living in residential facilities should be deprived of that right.

  2. Yes it is terrible for anyone’s smart phone to be taken in any absolutely necesssary time of isolation due to health reasons. Fact is many people and not just consumers don’t own smartphones. This is especially true of senior citizens who can only purchase basic cell phones at best.

    1. Thanks for your comment Lynda. I recall when I finally taught my mom how to use her iPhone — she lived by herself in Montana for 10 years after my dad passed — it closed the isolation gap considerably when she could text her family and see photos come through on her phone. (She never quite figured out how to send photos back!) But, let’s use this experience to push for parity in technology access for all.

  3. Another issue is that people who have LifeLine phones (a/k/a “Obama Phones”) have so few minutes they cannot engage in telehealth or stay connected to friends and family. They are too afraid to use their minutes. Here is a note I sent the head of FCC. Don’t know if he saw it. I urge everyone to send similar note to and Donald Stockdale
    To: FCC Commissioner Ajit Pai
    Wireless Bureau Chief Donald Stockdale
    From: DJ Jaffe, Exec. Dir. Mental Illness Policy Org
    Re: Raise Number of Minutes on LifeLine Phones
    Please raise the minutes limit on LifeLine phones. The President , Vice-President and other administration officials are appropriately pushing mental health providers to offer Telehealth services during the pandemic and touting all the steps various government agencies are taking to make Telehealth more widely available. For example, Asst. Sec. Dr. McCance-Katz mentioned that at the President’s direction, SAMHSA set up numerous seminars to teach behavioral health providers how to move towards Telehealth. Seema Verma has adjusted CMS regs to encourage Telehealth.
    But if people don’t have enough minutes on their phone, they can’t use Telehealth no matter what those agencies do.
    The FCC, via the “LifeLine” program incentivizes wireless companies to provide wireless service and phones to those who are at or below 135% of Federal Poverty Guidelines or participate in Federal Assistance Programs including SNAP and Medicaid. This includes many mentally ill and physically ill.
    But the FCC Commission only requires the Lifeline wireless providers to offer 250 minutes of calls per month. Can you please raise that minimum during the pandemic? The FCC administers the program through Universal Service Administration Corp. (USAC). Therapy sessions alone, can last 45 minutes and arranging services, and staying connected to friends uses up even more minutes. Many poor are afraid to pick up their phones to stay connected with friends or Telehealth for fear of using up their minutes.
    Thank you for your consideration. Let me know if you have any questions, comments, or concerns.
    Thanks for all you do.
    Stay safe.
    DJ Jaffe
    Exec., Dir., Mental Illness Policy Org

    1. DJ – thank you for this. I will write a letter also. I also heard — but I cannot recall the source — that folks with LifeLine phones cannot access tele-health if they have to make a call into an area code beyond theirs. In LA — we have myriad area codes in the same geographic area. I am looking for some confirmation of that.

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