What is a parent to do if the system for helping their young adult children is designed to respond best to patients who can help themselves?

Perhaps the most tragic result of the scarcity of mental health care in Colorado, in America, and in the world; is the lack of appropriate care for people with serious and persistent mental illness.  For them it means days of torment, without even the relief of knowing who they are, or whether or not the world and they are real.  For some with schizophrenia, if the voices in their heads are louder than the ones trying to help, they can succumb to the messages of despair.  For those with severe bi-polar disorder, they can surrender to the unbearably disorienting extremes of emotional highs and lows.  What is a parent to do if the system for helping their young adult children is designed to respond best to patients who can help themselves?

 

One mother, let’s call her Mary, became an activist.  Like a lot of folks who love someone with mental illness, Mary finds meaning in not only helping her son, but by figuring out how to make mental healthcare more available in general.  Professionally, she is an expert in vocational rehabilitation.  Mary contributes her time to programs offered by the National Alliance on Mental Illness (NAMI).  She also volunteers at Mental Health Colorado, a statewide advocacy group.  What Mary found when she tried to advocate for her son personally was a system that didn’t readily seek out the input of the parents of mentally disabled people.  The Health Insurance Portability and Accountability Act (HIPPA) inhibits the sharing of information about mentally ill people by their health care providers to members of their family. (The ill person can sign a release of information when they’re doing better.)  The law does allow family members to communicate their concerns to the provider.  In fact, this can be difficult or impossible.

“That’s probably our number one call, people who have adult children and are beside themselves. …What they tell me is that they can’t get past the secretary.”

Recently, I met with Mary; the director of the Mental Health Center of Denver (MHCD), Dr. Carl Clark; and the policy expert at Mental Health Colorado, Moe Keller; to talk about the problem.  Keller told Clark: “That’s probably our number one call, people who have adult children and are beside themselves.  They want to be a participant in their adult children’s treatment, and they can’t find out who the therapist is, even though they know the person goes to a mental health center. …What they tell me is that they can’t get past the secretary. …That’s what breaks down.”

 

Clark says part of the problem is that new graduates who regularly enter the workforce at MHCD “…have come out of school, and …what they’re essentially taught is:  You can’t talk to them.  As opposed to:  I can’t even acknowledge whether I’m seeing this person or not, but tell me everything you want.”

Mary discovered hers son was dropped from MHCD because of a lack of engagement.

Mary discovered her son was dropped from MHCD because of a lack of engagement.  She says, “He stopped attending his meetings; he kept losing his phone. I kept reporting that to MHCD.  …So he was dropped because he wasn’t engaged.  …From what I’ve read,” said Mary,

“as many as 70% of people with psychosis have difficulty becoming engaged because of anosognosia.”

 

“What [anosognosia] literally means,” says Clark, “is the inability to know that you’re ill.”  He continues: “People [who] have this, they don’t think they’re ill; they think there’s something wrong with the world, that they’re just fine.  And so there are a lot of strategies around that. What we try to do is to find something that the person is interested in getting from us.  It can be a variety of things.  …If they’re interested in getting a job, they get into [a] program.  So we connect with some people that way.  And some people it’s go[ing] back to school.  And [with] some people it’s housing.  …So you try to find some sort of connection, where you’re offering something that they want.”

…for people with serious and persistent mental illness, there are some additional arrangements that can be made, like being “certified,” or “committed.”

Clark talked about a range of mental health presentations and approaches to them.  He said he would look into Mary’s son’s case, and acknowledged that for people with serious and persistent mental illness, there are some additional arrangements that can be made, like being “certified,” or “committed.”

 

Involuntary civil commitment in the United States is a legal intervention by which a judge, or someone acting in a judicial capacity, may order             that a person with symptoms of a serious mental disorder, and meeting other specified criteria, be confined in a psychiatric hospital or receive            supervised outpatient treatment for some period of time. Standards and procedures for commitment are provided by state law, in every state.            (“Civil Commitment and the Mental Health Care Continuum…” p. 1)

 

MHCD, says Clark, cares for 600 people who are being treated involuntarily.  People who are “certified” with the state as mentally ill are not dropped from services, says Clark.  MHCD, he says, hires a person who works solely to certify patients so they don’t fall through the cracks, as Mary says her son did.

 

Clark says MHCD does a lot to keep people engaged.  But in Mary’s son’s case, visits by mental healthcare workers don’t help if, like this young man, you’ve lost your phone, or you’re never in your apartment to receive a visit by a mental health worker.  ”We think people with mental illness should be in treatment, not in jail,” says Clark.  So we have… [an] intercept model.  We have… the co-responder model [which pairs social workers with police officers when responding to mental health calls] …We’ve gone to the police and the fire department, and …the mental health court… [offering] treatment while they’re in jail, [and] …connection with people coming out of jail.  So all of those different points along the continuum of interventions.  …It means that people are not being in jail, for the most part, when they should just actually be in treatment.”

Mary thought her son might get more help in jail than wandering around the city.

Mary’s son was taken to jail by a police officer who witnessed his erratic behavior as he made his way through wintery weather in Denver, outside in his bathrobe. Mary thought he might get more help in jail than wandering around the city.  She says that while her son got an apartment with the help of a social worker at MHCD, her son’s name was on the lease; and when he didn’t pay his rent, he was evicted.  Mary’s son not only had difficulty with such things as rent; he would leave burners lit on his stove, she says, with debris on top of it.  She could never get anyone to go into his apartment unless he invited them.

 

As Mary talks about her son now, the description matches that of a patient who might have been housed in an asylum before the Reagan-era dismantling of institutions in the 1980’s. “This is the big debate,” says Clark.  “Are there people who need asylum care?  I would say, yes.”  He continues: “There are advocacy groups that say absolutely not.  That you can somehow build this magic place outside of asylum care that will replicate that.  And I don’t think it’s possible.  And we have not committed the funding either.  What’s happened is that the state hospital systems all over the country used to provide asylum care.  But then the funding mechanisms changed.  People reach maximum hospital benefits, so they need to be out…  And it’s like out to where? And so that’s the hard dilemma.”

Outpatient care seems inadequate for their loved one; and after coming up short on engagement, these severely mentally ill people often wind up in jail.

That’s the dilemma in which many families find themselves ensnared.  Outpatient care seems inadequate for their loved one; and after coming up short on engagement, these severely mentally ill people often wind up in jail.  Different communities find local solutions to the problem of serious and persistent mental illness, but the problem is universal, says Clark: “Only two out of five [people with mental illness] who need help are getting help.  Look at the need.  It’s huge.  But if you look at the resources that we put towards it, it’s small; and that is everywhere on the planet.”

 

Clark says that public mental health centers are not adequately funded, but neither is heath insurance paying the bill for mental healthcare.  “I hear complaints all the time about health insurance [from people with mental illness and their families].  They can’t find a provider.  This is the promise of parity. That just really hasn’t happened.”  Clark says Colorado’s recently elected Attorney General Phil Weiser has promised to go after this.  There is also relatively new legislation from the 2019 session, Senate Bill-222 responding to the needs of “Individuals At Risk of Institutionalization.”  This is a law that mandates care.  Implementation guidelines in the law stretch out to 2024.  Clark is taking a wait-and-see position about the new law.  Although he does say: “A lot of public policy in mental health is done through lawsuit.”

Dr. Clark is excited about artificial intelligence that allows for the care of 700 patients, instead of 70, by an equipped therapist.

Technology holds out some hope for Clark who looks forward to the healthcare system catching up with it.  He’s excited about artificial intelligence that allows for the care of 700 patients, instead of 70, by an equipped therapist.  Meanwhile, Mary knows the struggle of trying to keep her son involved in intensive outpatient (IOP) care.  She says, “When I was looking into IOP options, there was a three-month wait for even an intake appointment.  [Her son] was convinced at that point that …it wasn’t going to help. …Once you’ve had so many inpatient stays, one starts to lose faith in the system.  …There’s no confidence there.  …He’s convinced that they would get rid of the voices if the voices were in [his] head.  But since they can’t, the voices must be real.”  In the world of mental health advocacy, many would argue that a big part of the process of caring for serious and persistent mentally ill people is offering behavioral health interventions like psychiatry and counseling, treating patients with effective medications, and offering therapeutic settings that enlist their “engagement.”  There’s that word again.  There seems to be little wiggle room to give this process short-shrift.

 

Keller talks about the construction of long-term care facilities by medical centers that have become homes, in some cases, for chronically mentally ill patients.  The criminal justice system has gotten into the housing business for mentally ill people who are frequently arrested for crimes related to mental illness and chronic homelessness.  And public mental health centers, like MHCD are considering transforming administrative buildings into housing for the chronically mentally ill.

It will likely take relentless advocacy, big changes, and yes, maybe lawsuits, to alleviate the suffering of people with serious and persistent mental illness…

Can we look forward to appropriate, humane treatment of people with serious and persistent mental illness outside the criminal justice system?  Can we build a bridge between residential care with case management and the panoply of offerings that support those with mental illness who ARE engaged in their treatment?  Can we see healing, even among the severely mentally ill?  This seems like a job for a community.  It will likely take relentless Advocacy, big changes, and yes, maybe lawsuits, to alleviate the suffering of people with serious and persistent mental illness… and their families.

 

WORK CITED

Civil Commitment and the Mental Health Care Continuum: Historical Trends and Principles for Law and Practice. (n.d.). Retrieved December 28, 2020, from https://www.samhsa.gov/sites/default/files/civil-commitment-continuum-of-care-pdf.