Want To End Stigma? Stop Spending Time and $ On Changing Minds & Fund Research

BY PETE EARLEY

Well known journalist and author Pete Earley published the following blog about ACMI board members’ story.

(3-1-19) We spend much time, money and effort fighting stigma. Charles Goldstein, a parent of an adult son with a serious mental illness, a doctor and a mental health advocate recently questioned the value of such efforts. Put simply: Is it worth our time and money? Here’s a copy of a speech that he gave before the Council for the Advancement of Global Mental Health Research at Columbia University.

Mental Illness, Stigma and Leprosy 

To whom it may concern (and I believe that would be everyone).

My name is Charles Goldstein, I’m a retired emergency physician who’s worked in Phoenix Arizona in a busy metropolitan ER for over 40 years. I’ve worked with the mentally ill who were brought to or dropped off at my emergency room, usually inappropriately, because that’s one of the least helpful environments people with mental illness can be in. Almost none of the time that I was dealing with people with mental illness was I treating them, but more was trying to facilitate an appropriate discharge from the ER to someplace that might help them, a Herculean effort in and of itself. In addition, I have had the good fortune to work with very dedicated people striving to help people with mental illness. For the last 4 – 6 years or so I have become quite involved with organizations that do this good work; through this experience and because my wife, Laurie, and I personally have raised a child (now man) who has serious mental illness, I have a few things to say on the subject.

Mental illness, and particularly serious mental illness, afflicts an awful lot of people.

About 20 to 25% of the total population of the US has some form of identifiable mental illness and approximately 3 to 4% of the population have a serious mental illness such as schizophrenia, bipolar disease, or clinical depression. While there are many medications and forms of therapy which can help people with mental illness, none of them actually cure the disease. There are many problems that beset people with mental illness, but I believe in general there are two problems which the people who have various forms of this disease have in common in dealing with our society. These are ignorance and stigma.

We believe we have come a long way in reducing societal ignorance when it comes to mental illness.

Even as little as 50 to 60 years ago nobody, or very few people, had any idea that this was actually a chronic illness much the same as, say, chronic obstructive lung disease, diabetes, or chronic renal disease. I believe we’ve come a long way in recognizing mental illness as a chronic, as yet incurable, disease much like the diseases I’ve mentioned above. Combating ignorance about mental illness with educational programs and the like have made good headway in raising awareness and understanding for the unfortunates with this chronic illness; but, nonetheless, to compare it with the chronic diseases listed above is not a good analogy because there is another aspect of society’s attitude towards mental illness, and that is the problem of STIGMA.

Why, indeed, is there stigma involved with the disease of mental illness, but no stigma involved with the other chronic diseases that I’ve mentioned above such as diabetes?

I believe that the reason for Stigma has to do with the symptomatology. People with diabetes, heart disease, renal disease exhibit symptoms as well as those people with mental illness, however these disease elicit only sympathy from members of society. The symptoms of mental illness on the other hand are at best alarming to members of society and at worst frightening. A more accurate analogy would be to consider the disease of leprosy.

Leprosy is a contagious disease caused by the organism mycobacterium leprae. It is still endemic in some areas of the world to this day and can causes severe dysfunction in those individuals unfortunate enough to have it. While it is more or less easily cured today by a multi antibacterial regimen, 100 years ago or so this was an incurable disease and the disgust and the revulsion that society felt towards those people who had this disease caused them to isolate them and in some cases like that of Hawaii to restrict them to live on an isolated island. The stigma attached to leprosy was based on the disgust and revulsion people felt over the disfiguring symptoms of the disease. The stigma attached to mental illness is based on the symptoms of bizarre behavior which cause alarm and fear.

No amount of education was going to change society’s outlook on lepers, and though we try mightily it is very difficult to change society’s mind over the way it feels about people with mental illness.

That is not to say that organizations who do great work trying to reduce stigma should not continue to do that work because I believe it does help to some degree. However, in the case of leprosy, the stigma attached to the disease was overcome by finding a cure for the disease. I believe that finding a cure for mental illness will be the ultimate way to deal with stigma. Because of that I applaud the efforts of everyone to raise money either from the government, private organizations, individuals, charities etc., but I believe that the brunt of the money raised from such efforts should be spent on finding a cure rather than trying to combat the stigma from the symptomatology of an as yet incurable disease; Mental Illness.

Dr. Goldstein’s remarks reminded me of a July 2013 column written by Linda Rosenburg, the president and CEO of the National Council For Behavioral Health that sparked much controversy. It was entitled:  Is Mental Health Stigma Overrated?  and contained this paragraph:

Is mental health stigma overrated? Is it time to rethink anti-stigma campaigns that are based on the belief that stigma stops people from accessing services?

I must admit that I’ve long questioned the use of anti-stigma campaigns — fearing they do little to help people with mental illness. They have however become an industry. How about we instead put the money into services? 

I wrote about the Goldsteins last December in a blog post entitled: Parents Spent 15 Years Trying Community Treatment, But It Took Long-Term Residential Care To Help Their Son

Dr. Goldstein can be reached at auee@cox.net

Laurie Goldstein can be reached at gold15@cox.net

Subscribe to our ACMI newsletter

Frequently Asked Questions (FAQ’S) Secure Residential Treatment Facilities

Isn’t a secure residential treatment facility just a “mini” hospital?    No.  Secure residential treatment facilities are a new addition to the continuum of care, not a replacement or alternative to short term inpatient psychiatric hospitals like Desert Vista or a long-term facility like Arizona State Hospital (ASH).  

Secure residential treatment is intended to serve individuals who need around-the-clock, close supervision and support by staff with behavioral health training to ensure the individual takes prescribed medication and receives support services.  Individuals would be court-ordered but, also, screened by clinical staff before acceptance to exclude those with assaultive or significant self-harming behavior.  The reason the place needs to be secure is because the residents would leave if it was not.

Won’t a secure facility have to look and run like a “mini hospital”?   No.  Clinical screening of residents prior to acceptance into the program will permit a residential setting to be more like a home then a hospital setting, therapeutically beneficial for residents, and safe for staff and residents.

Patients having severe enough psychiatric symptoms that they are violent towards themselves or others do not belong in a secure residential facility and would not be accepted. These individuals need to be in a Level 1 hospital environment.  For example, violent patients can not have access to items that they can use to do harm. Furniture must be too heavy to throw; glass in the windows must be shatter-proof; fixtures must be anchored so they do not allow a person to hang himself; toilets must be made out of unbreakable materials, etc. These environmental modifications are costly, and the specifications are constantly updated so that they need to be replaced. In addition, safety requirements also affect the patient’s daily life and comfort.  Women are not able to wear a bra due to hanging risk; others cannot access computers or other items that are breakable and can be used to create sharp objects for use as a weapon or for self-harm.  Residential treatment facilities will not have these features because the residents accepted do not require these restrictions. 

Are you concerned about safety and potential violence in secure facilities?   Of course. However, a secure residential treatment facility can be safe for staff and residents in four ways:  (i) screening of admissions, (ii) an adequate number of trained staff, (iii) a safe physical environment, and (iv) appropriate policies for situations when a resident becomes upset and potentially assaultive or violent.

Getting people to be adherent with treatment is the first step to reducing violence.   We know that much of the violence by individuals diagnosed with SMI is by individuals who are not in treatment.   The clinical staff of the secured residential treatment facility must appropriately screen individuals referred for admission; a primary goals of screening is to determine if someone is too violent or at too high a risk of self-harm to be admitted or to remain.   To the extent that proposed residents have been off their medication for a period of time and are highly agitated or aggressive, they would need to be stabilized first in an acute care setting before being considered clinically appropriate for secured residential treatment; in addition, the facility would have criteria for admission which would screen out those who have a history of significant violence towards others even when taking prescribed medication for their psychiatric condition. 

Additionally, it is one thing to have someone who is verbally threatening but doesn’t act on it, or someone who does minor destructive things when angry (for example, tearing papers off a bulletin board or slamming doors).  Some individuals may engage in self-harm behavior like scratching.  All these behaviors are manageable in a residential level of care.  However, if the person’s behavior is so disturbed that he or she is engaging in serious assaults or self-harm, it is a mistake to try to manage the person in a setting not built or staffed to prevent significant property destruction, self- harm or harm to others.  This is why it is essential to have clear criteria for admission to a residential treatment facility.  It is also why such a facility will not take the place of psychiatric hospitals or Desert Vista or ASH (though it is likely that some patients who currently spend long periods in these hospitals could be appropriately treated in the less restrictive setting of a secured residential treatment program).   It also is possible that a patient could do well in the program for months and then have a deterioration, which would require hospitalization and a return to the program.

Will restraints be used?    No. Residential treatment facilities cannot use physical, mechanical, or chemical restraints. 

The only thing residential treatment facilities can use is an Emergency Safety Response, which involves subduing a physically aggressive person to protect staff and other residents from injury.   If a resident becomes physically aggressive towards others (staff or peers), and it is ongoing, police have to be called.  If the person is under Court Ordered Treatment, the court order can be amended to admit the individual to the hospital again.  If there is evidence of dangerousness to self or others, the police can immediately detain the resident and transport him or her to one of the local psychiatric crisis centers.  Any individual demonstrating significant aggressive behavior which poses an imminent risk of serious harm to others and is unresponsive to less restrictive interventions belongs in a higher level of care where restraints can be used safely to protect the patient and others.  

Will secure residential facilities have “security”?   Yes, of varying types consistent with licensure provisions.

These are intended to be residences – not prisons with barbed wire and bars.  The perimeter of the property has to be secure, just as are most schools today.  Electronic security can be used too — alarmed doors, a sequence of doors, motion detection and monitoring, etc.  Security staff may be available to assist everyone in staying safe.

How will someone be sent to a secure setting and how can they get out?  Similar to the way they do today. 

To be admitted to a secure facility will require that the proposed resident be receiving mental health treatment under a court order and that the judge specifically order secured residential treatment based on two important procedures: (i) the clinical team must provide an affidavit with evidence that this is the most appropriate and least restrictive placement, and (ii) program staff at the secured residential treatment facility, must accept the person based on the staff’s judgment that the facility is appropriate for the individual and can safely meet his/her needs and is appropriate for the person’s needs. Those admitted would need to be found by the judge to meet strict criteria indicating that they require treatment in a secured setting, based on prior failure to improve in intensive unsecured treatment settings due to non-adherence with treatment recommendations, or current evidence that the person would not comply with treatment in such a setting. After admission, there must be continual monitoring of the appropriateness for continued stay, with clear treatment goals and criteria for discharge to a lower level of care.   Providers and the individual, family, or guardian can petition the court at any time for discharge to a less restrictive level of care as they can do so today.   Providers also can petition the court at any time for transfer to a higher level of care.

Will individuals be subject to forced medication?  Only as part of a court-ordered treatment (COT) plan – just like today.

In Arizona, once a court has ordered treatment, medication can be given as part of the treatment plan developed by the treating psychiatrist and approved by the medical director of the treatment agency.  Only patients under COT, or those with a guardian consenting to treatment, can be required to take medication. We must rely on the judgment of the clinical team as to when and why to ask for COT. 

Will individuals have input into their treatment plan?   Of course, that is essential for self-guided, self-directed recovery.

The treatment team and the person will develop an individual treatment plan (ITP) just as they do today.  The goal is to achieve better participation in development of and adherence to the ITP by having somewhere stable for the person to live with 24-hour services and support.  The goal is to provide support and safety during the early stages of recovery in order to provide the best opportunity for success with a self-guided and self-directed recovery.

What happens if someone tries to escape, demands to leave, or leaves?  “Escape” is the wrong term.  This is not a jail or prison. It’s a residence for treatment.  Staff would try to persuade the resident to stay and, if unsuccessful, call mobile Crisis Services or the police and then take appropriate action.  Because all individuals will have a COT order indicating that they are required to reside at the facility for treatment, the alternative to leaving is a hospital setting.

The focus is always is on getting the resident clinically indicated and appropriate treatment and services. Every resident has the due process right to seek to move to a less restrictive level of care by working with the clinical team or by petitioning the court which issued the resident’s commitment order. 

 If a resident nonetheless demands to leave or evades the program’s security measures and is able to leave, staff could pursue an amendment for inpatient care, if justified, or a “pick-up” order.  This is the same process that is followed today. The facility files an “amendment” to the original court order, and the police pick up the person and bring him or her back to the facility. Repeated departures like this may indicate a need for a higher level of care.

What’s the difference in civil commitment to the State Hospital and commitment to a secure residential facility?

They are totally different types of facilities.  Our laws can accommodate both.  Secure residential facilities will add community beds in a far less restrictive setting than the State Hospital or our screening agencies like UPC, RIAZ or CBI, or our evaluation facilities, Desert Vista Hospital, the Behavioral Health Annex at Maricopa Medical Center, and Maryvale Hospital.

Secure treatment will fill a gap in the continuum of care and housing in order to prevent individuals with chronic SMI from falling through the cracks and ending up civilly committed in our State Hospital (for over a year, usually),  or worse — becoming incarcerated in jail and prison because of crimes, sometimes heinous ones like assault or murder, but more often nuisance crimes arising out of homelessness and poor judgment caused by active psychosis. Currently, due to a mandated cap on the census at the State Hospital, many patients are staying for months at an acute care psychiatric hospital which was not built for these long-term stays.

Can a family member, or guardian admit someone to the secure residential treatment facility?   No.  A court always is involved and must order someone committed. 

The family member and/or a guardian may be involved and give evidence.  But a doctor also is involved and must make the recommendation based on a clinical assessment.

Will a court order someone committed to a secure facility for a set period of timeYes, as currently happens for all court ordered treatment (COT). .

The COT time period is typically one year, but that is always subject to recommendations of the clinical team as required by Olmstead and due process rights. There must be periodic reviews and the ability to petition to be discharged.    We are comfortable with the concept of a secure residential treatment facility because of the all of the licensure rules and due process protections built into our system.

Will secure residential treatment facilities have to comply with fire codes? Of course. Secure residential facilities will be licensed and through that process must continually comply with all state, county, and local codes.  There are multiple kinds of health care and residential facilities that are secure, for example, assisted living facilities, nursing homes, dementia facilities, and therapeutic schools.

If you haven’t already, subscribe to our newsletter.

FAQs ABOUT IMDs, OLMSTEAD, AND SECURE RESIDENTIAL TREATMENT FACILITIES

Does the IMD Exclusion apply to secure residential treatment facilities? 

          No.   The IMD exclusion, which is found in section 1905(a)(B) of the Social Security Act, applies to “institutions for mental diseases” with more than 16 beds and to individuals between ages 21-65.  The IMD exclusion was intended to ensure that states, not the federal government, be responsible for funding psychiatric services and substance use disorder residential treatment.  Secure residential treatment facilities will not be IMDs as they will have less than 16 beds.  

 How does Olmstead relate to the Secure Treatment?

The landmark Supreme Court decision,Olmstead v. LC, 527 U.S. 591 (1999), protects the civil rights of people with disabilities from being inappropriately institutionalized. Olmstead requires that individuals reside in the “most integrated” setting that the individual’s treatment professionals agree is clinically appropriate. Olmstead at 597.  ACMI envisions secure residential treatment facilities as providing a more integrated setting to hospitalization, jail, or prison for individuals who have not been successful in other community living arrangements. 

All individuals who are referred to and accepted in a secure residential treatment facility will have been committed by a Title 36 civil court.  And Arizona law is actually more protective than Olmstead because it mandates that individuals be provided services in the least restrictive placement: “The court shall order the least restrictive treatment alternative available.” See ARS 36-540.  Consistent with Olmstead, Title 36 also requires that a treatment professional to conclude that a less restrictive traditional community placement is not appropriate.

Does Olmstead forbid secure settings other than a psychiatric hospital?

No.Importantly, the Supreme Court explained that admission to any facility always depends, first, on the treating professionals’ assessment that the facility is appropriate for the individual either as an alternative to a more restrictive setting such as a hospital or a less restrictive setting such as housing in the community.  Olmstead at 597. 

Second, secure residential treatment facilities are the kind of option that the Supreme Court seemed to anticipate and encourage when it said that states “need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities …”  Olmstead at 597 (emphasis added).   Individuals with chronic serious mental illness face unique challenges and may benefit during their recovery from services delivered in a clinically appropriate, secure residential setting.  Such a setting is “more restrictive” than other community-based housing options, but “less restrictive” than inpatient care or incarceration.  It can offer an alternative to jail, prison, the state hospital, or life and death on the street.      

Will secure residential treatment facilities meet due process requirements. 

Yes.  Olmsteadrequires, first, that treatment professionals determine what is appropriate clinically for each person. Second, all due process protections apply as to who may be admitted and why. No person will be admitted to a secure residential treatment facility except under a court-order.  The court order must be based on and follow an assessment and recommendation by an individual’s treatment professionals that (i) the secure facility is the most integrated setting appropriate for the individual’s clinical needs, and (ii) the individual likely cannot succeed in a less restrictive community placement.  Individuals considered for admission generally will have been unsuccessful in other types of housing and treatment settings.   Third, there will be periodic review of appropriateness of continued stay and criteria for discharge and the ability at any time to petition for discharge.  Fourth, there must be ongoing, periodic reviews about whether transfer to a less restrictive setting is clinically appropriate.  The individual can petition for discharge at any time.

Will secure residential treatment facilities provide comprehensive services?

          Yes.  Olmstead requires that states offer services, programs, and activities in the most integrated setting appropriate to the clinical needs of the individual.    Secure facilities can provide all needed services and support, including the full range of clinical and therapeutic services and peer support consistent with an individualized treatment program.  Personal choice and independent living skills will be promoted consistent with maintenance of a therapeutic and safe environment for all residents.  There will be a full range of recreational and educational opportunities.  All residents will have ongoing contact with an assigned outpatient clinical team who will follow the individual after discharge to a lower level of care.  In short, secure residential treatment facilities can be the most integrated and most appropriate setting for people who are struggling in their recovery journey in other outpatient settings.

This post was edited 8/6/2019 to ensure that you have the most up to date information!

If you haven’t already, subscribe to our newsletter.

What is a Lighthouse Model Community Home?

Lighthouse Model community homes are a form of long-term housing for people with serious mental illness (SMI). They are located in safe neighborhoods and run smoothly and efficiently resulting in a good relationship with the neighbors. The program is centered around the needs of the individual rather than a program (one program fits all).

They are distinguishable from other forms of housing by their capacity to respond to SMI symptoms without threats of evictions for behaviors that are related to their illness. Other housing programs, even those designed to aid individuals with SMI, may evict a member on the grounds of substance abuse, unpredictable behavior due to their mental illness, disregard for program schedules and/or other violations of rules. Due to their serious mental illness, these individuals are more likely to be hospitalized, evicted to the streets and/or incarcerated. The lighthouse model approach is person centered not program centered. Staff recognize behaviors that are symptomatic of SMI and assist the individual to manage their symptoms while retaining their housing.  Staff are available 24 hours a day with on-site behavioral technicians who are trained to respond to behaviors associated with SMI symptoms and who make an effort to de-escalate any situation that occurs. Their whole goal is to help the person remain successfully in the community in order to develop a real and meaningful life. If, for example, a person has to be taken to the hospital, or if they end up in jail due to behaviors related to their mental illness that were determined uncontrollable in the current setting, the member will retain his or her place in the Lighthouse when they return. Members all sign individual leases and pay 30% of their income. There is not a time limit on the length of lease and occupancy.

Advocates of the Lighthouse community home model believe that:

  1. This is an efficient cost-effective program that provides the support and safety that enables people to be permanently housed many of whom would otherwise  become homeless or repeatedly cycle through other housing programs, hospitalizations and incarcerations.
  2. The traditional short-term traditional housing model is insufficient for the chronically mentally ill (a small subset of the SMI population that have not achieved recovery and have failed to demonstrate the ability to successfully live independently.
  3. For these individuals there is currently no other form of suitable housing available that meets their needs to successfully live in the community.

Characteristics of the target population for Lighthouse Model housing:

  1. All referrals should have serious mental illness too severe to live with family or friends.
  2. Failed multiple attempts at living independently.
  3. May have been unsuccessful at other programs and housing settings.
  4. Have had many contacts with fire paramedics, police and the judicial system.
  5. They also may suffer from addiction which often is grounds for eviction from other programs.
  6. The target population may improve under supervised treatment, but often relapse when released too soon to have benefited from a supportive and therapeutic environment.

Subscribe to our newsletter

Why An Organization Focused on the Chronically mentally Ill?

Today over 200,000 Arizonans live with serious mental illness (SMI); more than 13 million individuals nationwide. Most are adequately served by our statewide Medicaid system commonly known as AHCCCS (Arizona Health Care Cost Containment System). But, many of those with the most serious mental illnesses live on our streets and in and out of our jails and prisons, primarily because of a lack of appropriate housing. They’re not safe, they lead lives filled with misery, fear, and danger because our current system is not able to meet their special housing needs.

The Association for the Chronically Mentally Ill (ACMI), a non-profit organization, was founded by a group of passionate parents whose adult children shared a similar experience with Arizona’s behavioral health system. The families of ACMI are working hard so that future families will not have to endure the multiple and unnecessary hospitalizations, incarcerations and homelessness that their sons and daughters have experienced. People with serious mental illness prematurely die 25-30 years earlier than the average person without serious mental illness. Indeed, the purpose of ACMI is to not only shine a light on this reality, but to advocate and work with our State’s leaders in health care, public safety, and government to implement practical solutions that are both compassionate and effective for our chronically and seriously mentally ill population.  ​

How Can You Help?
You can help by continuing to engage with our communications, share about this work, and partner with ACMI financially. The vision is to improve the well-being of the Chronically Seriously Mentally Ill population through filling the gaps in the current continuum of care with:

  • More “Lighthouse-like community living” homes.
  • Secure Treatment Facilities. 

We will work with all persons and organizations who share our deep concern for the well-being of this population. Please join us as we seek to ensure that the most vulnerable mentally ill can achieve a life with dignity!