Parents describe need for residential housing in Arizona for severely ill sons and daughters
(12-17-18) Can everyone who is seriously mentally ill be helped through community-based services or are some individuals so impaired that they need longer term residential care, possibly for life?
It’s a question being asked more frequently as our jails and prisons continue to fill up with more and more seriously mentally ill Americans whose real crime is that they became ill.
Because of our asylum past, it’s also a question that sparks strong debate.
In Phoenix, several parents of severely ill children have formed a non-profit called the Association for the Chronically Mentally Ill (ACMI). The group argues that community-based services often are inadequate to help their family members who have been diagnosed with serious mental illnesses, as well as, other issues such as addictions, ADHD, and additional significant mental disorders.
Laurie and Dr. Chuck Goldstein helped found the Arizona non-profit after spending fifteen years and hundreds of thousands of dollars trying to help their son, Daniel. You can read more about ACMI at the end of this blog, but first I’ve asked Laurie to explain why she and her husband are advocating for long term residential treatment beds. She answered by telling me about her son.
Our Son Daniel by Laurie Goldstein
Our son was born in 1987 to a 15-year-old birth mother who did not seek prenatal care and denied she was pregnant even while she was in labor.
He began exhibiting atypical behavior as a child and was soon diagnosed as having atypical ADHD symptoms. We knew Daniel was bright as soon as he joined our family, but he could not follow directions, and, as he grew older, he began showing significant socialization issues.
At age four, he set fire to furniture in the house.
His behavior led us to begin what became a series of visits to multiple child psychiatrists and psychologists, who we hoped would teach us how to help our son. Of course, there were endless meetings with school officials and special IEP accommodations in school.
Because of Daniel’s bizarre behavior, he had trouble making and keeping friends. He often appeared to be responding to some internal stimuli, gazing off into the distance and laughing inappropriately. One day my husband came home and found Daniel pouring gasoline along the perimeter of our house. He explained that he was killing ants. He was 10 years old. Luckily, my husband got there before Daniel started the gasoline on fire.
By middle school Daniel’s anxiety, depression, and paranoia began escalating at a frightening pace. To escape the taunting voices in his head, he started to self-medicate with marijuana at age fourteen and that eventually escalated to methamphetamine and opioids/heroin. We were now dealing with mental illness and drug dependency.
It was during an early adolescent in-patient stay that the doctors first indicated Daniel might possibly have schizophrenia along with ADHD, a diagnosed mood disorder and drug addiction.
By age seventeen, he was becoming too dangerous to live at home with us. He would invite strangers, who had guns, into our house. He would introduce them as his best friends, even though he did not know their last name (or their first, most of the time.) A signed art piece (painting) was stolen from our walls by one of Daniel’s new “friends” never to be recovered. We began to worry about our daughter’s safety. She is three years younger than Daniel and many of the people who he was bringing home frightened her. He was becoming a danger to our family and himself.
Laurie and Dr. Chuck Goldstein
We decided to send him to a locked down behavioral school in Utah that promised to help. We discovered the counselors there didn’t believe in mental illness or in medication. They quickly changed their minds (within a week) and asked for permission to give him medication.
He never achieved any of the progress that he was supposed to and on his 18th birthday he decided to go it on his own.
He would disappear for days and often get assaulted. We convinced him to enter an adult treatment ranch in Missoula, Montana. He stayed three days, leaving in the middle of winter without taking any clothing or supplies, completely stunning the staff.
He lived on the streets in Montana for a month, homeless, until we brought him back to Phoenix after getting calls from the police and clergy stating that he was really not street savvy and they feared for his survival. Soon we were caught in a destructive pattern.
We would set him up in apartments that we rented and a condominium that we bought, but the result was always the same. He would invite other street people into his place and he would systematically destroy the property. All electrical items were dismantled to prevent him from being spied on. He would punch holes through walls to stop the voices that he was hearing. One day my husband took over more than $200 worth of groceries for him. He called a few hours later and told us that he didn’t have anything to eat. When we asked about the groceries, he said that he had thrown them away because they were poison. He also threw away furniture and clothing.
We kept on trying to find a program that would help him.
He was in fifteen different dual diagnosis programs, often being kicked out as being too mentally ill for the drug treatment programs and inability to follow “the rules.” He was denied behavioral health programs because of his drug use. It was a Catch-22.
We tried everything. A judge ordered outpatient treatment and an assertive community team (ACT) was assigned. But nothing seemed to help him. He would not engage with the team, often hiding from them.
Our son spent years in-and-out of hospitals only to have his psychosis get worse – even when he accepted ACT support, it was not enough. The ACT team doctor would often stop prescribing oral medications because Daniel was difficult to find and not compliant, and would also miss his monthly injections.
At one point, the ACT team tried to dis-enroll him. Why? Because he was such an extremely difficult case. I kept meticulous notes (I’m an engineer). Daniel’s father is an emergency room physician and director. We would call the ACT team to complain that he was de-compensating. To no avail.
We would plead with the Urgent Psychiatric Care (UPC) Center in Phoenix, requesting that it keep him hospitalized rather than give him one shot of medication and discharge him, which only led to a repetition of the cycle.
Getting help for Daniel was problematic because of his actions. He tore the sink out of the wall at Banner Samaritan Hospital when he was told that he was not going to be discharged after we took him there to treat a cellulitis in his leg.
After trying for weeks to get help for his increasingly destructive behavior and with no help from his ACT team, he kicked down his upstairs neighbor’s door and handed him a vacuum cleaner. Even then, we had to plead to get the ACT team to amend him. Taken to UPC, he escaped.
It became clear to us that Daniel needed long term hospitalization to become stable. We quickly found ourselves filing grievances against his health insurance company and its clinical team who didn’t want to pay for long term residential treatment.
But we persisted and got him into a level one mental facility.
It has taken us fifteen years to reach this point. Daniel spent two and a half years in in-patient and only then did he become insightful enough to understand that he was ill, and that he needed to take medication. He therapies provided at the hospital was instrumental in his recovery. Without the long stabilization and therapy, he would not have stayed at the Marc Lighthouse, he would have been AWOL within hours.
Two and a half years to become lucid enough to understand that he was ill.
Since being released in May 2015, Daniel has remained stable and is mostly compliant. He moved from the hospital to a MARC residence and then into a MARC Community living Lighthouse home. He has had no hospital stays or amendments. He is working at supported employment through MARC, has a Labradoodle, and plays guitar.
Our son is not the young man who he once was. Fifteen years of cycling through the system has left him with poverty of thought.
But today, he is safe, happy that he has a place to live, and enjoying the friendship of his roommates and most staff members who are his extended family. He is working under supportive employment 2- 3 times a week, he plays guitar, goes to CET training, and looks after his dog.
A longer period of stabilization finally helped him, a continuous 2.5 years stay in level 1 hospital.
Our son is why we and other parents have joined together to create a non-profit that recognizes that some individuals need long term residential care. It’s time we recognize that.
RECOMMENDATIONS from The Association for the Chronically Mentally Ill in Phoenix
The Association for the Chronically Mentally Ill (“ACMI”) is a group of individuals devoted to improving the care for persons suffering with Chronic Mental Illness who often are ejected from our mental health care system into the streets, hospitals, jails and prisons for exhibiting the symptoms of their illness.
We are a grassroots organization, led by family members of chronically mentally ill persons, joined by physicians, legislators, attorneys, care providers and others and supported by a growing number of citizens as we educate the public on these issues.
Serious mental illnesses, such as schizophrenia and bi-polar are physiological brain impairments, not just temporary emotional issues, and one does not “recover” as one recovers from a broken arm. Such illnesses are more like diabetes in that they must be treated/managed over one’s entire lifetime.
Maricopa County has about 25,000 persons officially diagnosed as Seriously Mentally Ill (“SMI”) being treated in the public domain, most of whom respond reasonably well to existing treatment practices. However, our research indicates approximately 2,500 people are chronically mentally ill,( i.e. persistently or acutely disabled), and should be on Court-Ordered-Treatment (COT), all of whom need 24hr supervision and, to varying degrees, assistance, some need to be confined as well.
The severity of their illnesses prevents them from responding to treatment within existing programs. So, they are un-treated, which can result in tragic consequences: school shootings; homeless persons begging and sleeping in the streets; human waste on downtown sidewalks and in alleys and parks; psychotic persons recycling through medical facilities and jails and back into the streets, living in abject misery as their health and well-being steadily deteriorates.
We recommend redeployment of existing public expenditures to develop the following two solutions and improve critically-needed treatment for these marginalized fellow human beings:
- Lighthouses or Lighthouse-like– long-term supportive housing, from which residents are not ejected for exhibiting symptoms of their mental illness, as alternatives to churning patients through residential treatment programs, the streets, emergency rooms, hospitals, jails, halfway houses and prisons. We have two such facilities, started as pilot programs, which are proving successful. We need more.
- Contained Treatment Facilities– humane, well-regulated facilities for contained treatment, either voluntary or involuntary as medically appropriate, for those who are more severely-afflicted, are unable to “maintain” in Lighthouses and need more intensive care either temporarily or indefinitely. Such facilities could be psychiatric units of hospitals, separate facilities (up to 16 patients, to avoid designation as an Institution for Mental Disease) and/or expansion of the civil unit of Arizona State Hospital (“ASH”) above the 55-bed maximum as now limited by the Arnold v Sarn Settlement. We believe some patients can gain from a longer stay and then move back into appropriate community living.
We will need changes in laws, contracts and practices to develop more Lighthouses, more Contained Treatment Facilities and other solutions; and, we propose to partner with AHCCCS (Arizona’s Medicaid program), our Regional Behavioral Health Authority, Arizona State Hospital, care providers, psychiatrists, lawyers, mental health court judges, our legislature, our governor, family members of chronically mentally ill persons and all relevant persons and organizations to achieve these goals.
ACMI is an independent, private 501(c)(3) organization that exists to support ACMI
Tax Identification Number: 83-2313897
Visit www.ACMIONLINE.com to donate online or contact LaurieGoldstein@acmionline.com.
About the author:
