Tracking The Tragedies - Santa Clara County

Lauren Rettagliata and I wrote the Housing That Heals white paper to create shared learning about the barriers to appropriate medically necessary treatment, care, and housing for our loved ones. We wanted to bring awareness to the various issues that prevent our loved ones from living in dignified housing with support and services that prevent them from being homeless, jailed, or buried. We have received an outpouring of gratitude and support from many moms like us and families like ours since we released our paper in May 2020.?

I received a recent email from a mom in Santa Clara County after I angrily posted, “This is NOT Housing That Heals” with this Mercury News article, ‘Living in absolute squalor’: Mental health group homes go unregulated in Santa Clara County" By?ETHAN VARIAN.

The email was from a Santa Clara mom, Nicole Wiltshire, who wrote,

“Thank you for the work that you do with Housing that Heals.? I have been following you for a number of years now on Facebook.??

Thank you for posting the article about the deplorable situation here in Santa Clara County for individuals like my son (our sons) who need to live in group homes.

I can remember when I first read your stories on "Housing that Heals," I felt finally, the empathy that I had so longed for, in that illness and recovery are not a one size fits all. I remember sharing with friends at NAMI because I was so glad.??

There is such a poverty of conversation surrounding the subject of group homes.? Now, here we are, 9 years on from when I first wrote that letter and the situation is even worse.”

(See Nicole's 2015 letter copied below.)

This is why #FamiliesLikeMine supported the Care Act, BHSA Reform, and Prop 1. We need more quality, supported housing like The John Henry Foundation and Psynergy models described in Housing That Heals. We are concerned they are being omitted from the Prop 1 BOND BHCIP grant opportunities. We have joined other advocates across the state to elevate our concerns. We can not wait another 9 years for our loved ones to receive the APPROPRIATE least restricted level of care in a quality setting with enhanced services.

Housing That Heals was a call to action and a call to partnership. Lauren and I were just two of the “moms on a mission” in search of a place like home and partners in care. With her permission, I am sharing Nicole’s 2015 letter below as an example of both.?

The Stress of Independent Room and Board Housing on People with Mental Illness in Santa Clara County

Imagine yourself standing in the middle of a living room, there are flies everywhere, circling all around you.? The odor coming from the front bedrooms is making you feel nauseous. ? It is permeating through everything and you feel it sticking to your clothing and hair.? You look on the floor to see a used cotton swab!? You don’t want to sit down!? The couch is broken and dirty!? There are people milling everywhere.? This is a small house, where are they coming from?? Someone comes out to talk with you!? ? The room is shared, they say, “$650 each person per month, three meals per week!”? Or for three meals per day, the rent would be $800 per month.? We look at the room, soiled bed and peeling paint on the walls.

I am not the one who needs the bed.? I am the parent, looking for another independent room and board house with my son who has schizophrenia and who is on disability, receiving less than $900.00 per month.? We run out of the house.? I am screaming inside, “Doesn’t anyone care about this!”? What country do we live in, what state and what county!? ? I wish this scene was unique but it isn’t. ? What if this was your child and you were standing in that room!? What if this was you?

My son tells me that I have set my standards too high and that when you have a very serious mental illness, you learn to exist on a sub-standard level!? He also tells me that “society doesn’t want the mentally ill around!” ? He goes on to say that there should be special communities for people with mental illness where they will be safe and better treated!? Such deeply sad insight!

To run an independent room and board house for people with serious mental illness all you need is a business license.? It cuts down on County and State expenses and there is no oversight! ? It has turned into a free for all and our very ill loved ones are the merchandise, bought, sold and thrown away!? Santa Clara Behavioral Health tells our loved ones that moving into a room and board house is a “step up in recovery!”? The over worked, under staffed social workers and case managers have the most difficult of jobs and there is nothing else for them to offer!?

My son has been cycling through room and board houses for people with mental illness in Santa Clara County for over seven years now.? He has existed in houses where clients with serious mental and physical health issues are not allowed to flush toilet tissue, where they are emotionally abused and referred to as crazy.? In one house, he contracted MRSA!? ?

He has existed in houses where police are called on a routine basis and where one person died during the night and wasn’t discovered until the afternoon of the next day! ? He has had clothing stolen, been threatened and finally this present situation that began when he called me sounding very distressed!? “Mom, the owner of our room and board house has left the country for a long vacation and the cook tells us that we are running out of food!”

It is the end of March, the owner has been gone for over a month leaving her cook in charge.? She has left someone else in charge of the household account and now the account is empty.? My son informs me that the cook hasn’t been paid and is threatening to quit.? Twelve clients in two homes are affected and the owner isn’t due back for three weeks.

?I am filled with anxiety, and I drive over to the house and talk with the cook who tells me that he has barely enough food to last through the weekend.? I placed a call to my son’s clinic, East Valley Behavioral Clinic.

It begins with a little confusion.? It is a Friday. ? I ask for a welfare check and am told that they couldn’t do this for an independent house.? I am put in contact with Adult Protective Services who suggest that I begin asking for donations from food banks to get through the weekend while they assess the problem and prepare for a social worker to go on site.

By this time I am beside myself and friends are offering to help feed everyone at the two homes.? I place another call, this time to a friend who works in Santa Clara County Behavioral Health. ? It turns out that yes, a welfare check should be done and addressed that very same day!

My gratitude overflows.? Teams were coordinated from separate agencies to help. .? My son tells me that Momentum for Health arrives with food for the weekend.? On Monday morning a wonderful young man who is the rehabilitation counselor at East Valley Clinic arrives to talk with my son and someone from Adult Protective Services arrives.? In the meantime arrangements are made for food to be cooked and delivered to both houses each morning. ? I discover that the other house is considered uninhabitable.

It is stressful.? Twelve of the most vulnerable people caught in such an awful situation.? I question myself over this!? I watch my son’s mental health deteriorate.? During the past days we have gone from house to squalor searching for a new place as quickly as possible. ?

Finally, another day into our search!? We are led into a bedroom; three men share the room, $800.00 each person per month.? Three meals are brought in, no caretaker on site and no house phone allowed.? There are to be no female visitors.? The owner tells me that he cannot wait for the rent money to come in from my son’s re-payee.? It would take a week and asks for $800.00 up front!? I pay!? We take the room, just for a short while we both say!? In the meantime, we keep looking!? Keep searching but all the while realizing that the walls of care are cracking and everything is beginning to tumble down around us and no one seems to be paying attention!

How much more can people with serious chronic mental illness endure!? Is this why some end up homeless because this is too much for them?? I have no answers.?

I don’t know.? I am just a family member, just a mother with no other title, but I want to thank you if you have read this.? I also wish to thank the extraordinary people, the case managers, social workers and rehabilitation counselors!? My heart goes out to you!

Most of all, I want to thank my son, the bravest person I know for allowing me to share a little of our story!? ?

By Nicole Wiltshire

Santa Clara County

2015