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How I Fought to Get Housing for My Son With a Serious Mental Illness

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For over seven years, my son has been receiving treatment and support from Arizona’s behavioral health system. He has a mental illness called schizoaffective disorder, which requires a high level of care. Because we don’t have the resources to take care of him in our house, he currently lives in a group home. 

And even still, I have to fight so he can stay there.

During his first year in the system he was able to live with us with the assistance of Assertive Community Treatment (ACT), a six-member team that provides multidisciplinary, flexible treatment and support to people with serious mental illness. He had been placed on court-ordered treatment due to his lack of insight, a condition known as anosognosia, where patients do not fully understand they’re ill and can’t manage their own daily living and health care needs.

After being released from his court-ordered treatment after one year, our son stopped taking his medications and quickly decompensated into psychosis. After a year of four more hospitalizations involving quick releases into the community before being adequately stabilized, we watched helplessly as our son lost more capacity with each subsequent quick release. By the end of a whole year of living in constant crisis, and while our son was in the hospital, we realized we could no longer care for him in our home. With broken hearts we requested the ACT team and hospital social worker find him a 24-hour residential placement. Our family was angry, exhausted and devastated. We felt as if we had lost him.          

The first option presented to us was an apartment where he would live with another man with serious mental illness with a supportive staff person on site. This apartment, we were told, was also near an elementary school. Our son was still psychotic and delusional, and so we refused the option. We knew it was not an appropriate level of care and support for his needs. 

Upon our refusal, a residential group home became available. It was near our home, which is what we desired, and had 24-hour staff on site with a structured environment. Our son moved in to this home one week before Christmas. I found it clean and the staff communicated well with us. It was a perfect fit for his needs.

However, just after a few months of my son residing in the group home, our state’s Regional Behavioral Health Authority issued a notice for his removal on the basis that he was difficult to care for and did not always do his chores. Remember, this is on the heels of a year of crisis and psychosis, a year of four different hospitalizations and quick releases into the community. Now the state’s provider wanted to move him out due to lack of complying with chores. 

The group home staff and case managers gave us other options of care, including a boot camp for troubled teenagers. Our son has a serious brain disorder with psychotic features — they actually thought he could get “straightened out” in boot camp. Needless to say, my husband and I along with our son’s psychiatrist advocated for him to continue to stay in the residential group home and we were successful.

Our son has been in this group home for more than three years now and lives there with four other men. He has only had one more hospitalization due to a medication change two years ago. It’s the closest thing he’s had to stability in seven years. 

Yet still we’ve been pressured and coerced by the state to place him in a lower level of care. Periodically, we’ve had to prove our son needs this level of care and are made to feel guilty by doing so.

But our son is unable to work at a job, manage his finances and daily living needs due to his lack of awareness and symptoms from his illness. Our son’s psychiatrist, his ACT team, our son’s pastor and counselor are all in agreement that he should remain at this level of housing and support. As a former case manager said after our son was released from his last hospitalization, “Success for him is no further psychosis. If we can keep him from that, we’ve done well.” I would agree. He is able to live in community with a level of support that is appropriate to his needs and is near our family’s home.

But like a cold glass of ice water thrown in our faces, it became shockingly clear during this process that the mental health system is not set up for people who are as sick as our son. I remember feeling like a mannequin in a store front window. Helpless, like people were all around us, yet I couldn’t get their attention no matter how hard as I screamed.

Because while we were able to secure a fitting place for our son — for now — what has haunted me since are the others who live with severe mental illness. The ones who don’t have mothers able to devote their days to full-time advocacy. What is happening to them?

There will always be individuals, like our son, who are resistant to current models of treatment. What is an appropriate outcome for them? Where should they be allowed to permanently reside? Currently, the answer is prisons, homeless shelters and on the streets.

Our current model of care for the seriously mentally ill places an emphasis on independence without considering the individual’s history, needs or brain disorders. This can be catastrophic for those who lack insight into their illness and need more reasonable amounts of time to recover, if recovery is even possible at all. We need to create a more flexible system of care for this small group of individuals who are incapacitated, or we will continue to filter out the sickest and weakest individuals in favor of a system that only works for those who can self-direct or are “easier” to care for.

It is unthinkable that we should continue to ignore the issue of appropriate housing for the most severely mentally ill like our son. This is an issue that’s time has come.

Originally published: July 28, 2015
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