Deinstitutionalization: Part 3 of 3: The Verdict

 There are many pros and cons to having institutions available for people with mental illness or developmental disabilities to live. 

They should only be available when someone's needs exceed the capacity of community-based options, or when they prefer to live in a congregate care setting, provided they have other choices. Choices should not only include receiving services in an institution or none at all. 

Choice should not only include discussing the community, but also visiting and experiencing community living arrangements, including supportive employment. Exposure to the community should include activities with people with and without disabilities. Therefore, Special Olympics should not be the only option for exercise and physical activity. Perhaps, they could try out a weight room or gym for exercise. Again, community living is an option (keyword: option), not a must for everyone, and there is no firm rule about what options should be explored by the individual. 

As a side note: reducing the institutional census should not involve just releasing people to improve statistics, without appropriate life and coping skills. When this happens, it creates a situation that will require longer and longer periods in institutional settings. 

Also, when we close institutions, individuals who need them get directed to go to other available institutions, such as traditional correctional facilities, which are certainly not appropriate for this population.l

For me, I got the right medication and therapy in an institution, especially when I was a danger to myself and others, but it took way too long before they wanted to start planning discharge. Services like Programs of Assertive Community Treatment and  Involuntary Outpatient Commitment are ideal when they can be safely accommodated. 

I am only in favor of institutional settings if someone is dangerously mentally ill and/or has dangerous challenging behaviors and needs to be there or chooses to live there or when the system cannot accommodate a less destructive placement. 

These internal committees that review forensic service recipients' privileges and discharges need to be eliminated. These committees in New Jersey are known as the Special Status Patient Review Committee (SSPRC) and the Clinical Assessment Review Panel (CARP)  

Discharge planning should start at admission to avoid situations where it takes an exorbitant amount of time to get people back to the community, including those on forensic status. Discharge is not an “if”, it is a “when”. Meaning, discharge should be thought of as something that will happen for everyone, not just a mere possibility. 

Deinstitutionalization: Part 2 of 3: The Cycles of Institutions:

 A lot of this post is copied from the Autistic Self Advocacy Network ASAN Institutions: The Old, The New, and What We Should Do and Cycle of Institutions toolkits. https://autisticadvocacy.org/policy/toolkits/institutions/ and https://autisticadvocacy.org/wp-content/uploads/2020/10/PL-cycle-clpc.pdf

ASAN says institutions nowadays look different than the old ones, but they can be similar. Some institutions look like farms or campuses on which several houses or cottages are located on a large piece of land. They may also be large buildings. ASAN describes institutions as “bad places to live.”  ASAN is in favor of closing all institutions for good. I believe we need at least some institutions, and we need to make them better, not get rid of them altogether. 

The ASAN cycle of institutions is the reason institutions keep closing and opening again. This cycle is as follows: 

1. New institutions get made. They say they are not like the old institutions or that they are not institutions at all. They say these new places will help people with disabilities, but they look and act a lot like the old institutions. 

1. People get sent to the new institutions and don't actually get help. They don't get to go to school, learn how to do jobs, or learn how to live on their own. People start getting hurt in the new institutions just like the old ones.

2. People started to notice how bad the new institutions were. A government worker might visit one of the reports that shows up on TV or in the newspaper. 

3. People try to think of new ways of helping people with disabilities. They couldn't think of a way to help them live in the community, so they came up with a new kind of institution. 

4. Repeat Steps 1-4

This is the process of innovation and improving things: having something fail and then coming up with new solutions that meet the same needs. This process is benign, if not helpful, in making our institutions better. 

Another cycle of institutions I feel is worth mentioning is the cycle of trans-institutionalization, which is when people with mental illness and money are shifted from mental health institutions to correctional institutions. This cycle is as follows:

1. Someone has a mental health crisis. They are denied admission to a hospital. They are released from the Emergency Room to the street with no follow-up mental health care. 

2. They continue to decompensate until they commit a crime and get arrested. In the court system, they are treated as a criminal, and the crime was a symptom of their illness. 

3. Since insanity defenses rarely work, they go to prison, where they are abused by other inmates and the officers. They get deeper into the mental illness, and recovery becomes more difficult.

4. While in prison, correctional officials sometimes feel the inmate needs mental health treatment, and they transfer them to a forensic psychiatric hospital. This is rare because other inmates will fake mental illness to avoid prison or get access to drugs given at the forensic hospital. 

5. They are often released from prison with just clothing, $50, and a bus pass to get home or to a shelter. No longer do they provide referrals to mental health professionals upon release from prison. Oftentimes, they are homeless and without a supportive family. They have no access to mental health care because they do not get Medicaid right away.

6. They decompensate and have another crisis. 

7. Repeat Steps 1-6 

This is what trans-institutionalization looks like in practice. I am urging States to gradually stop incarcerating those with mental illness and provide them with treatment in a hospital instead. We need to make better use of our forensic commitment laws (I.e., Not Guilty by Reason of Insanity, Incompetent to Stand Trial, Guilty but Mentally Ill, etc.) to do this. 

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Deinstitutionalization: Part 1 of 3: Pros and Cons

 Pros:

• It refocuses the emphasis on having the same rights for those with mental illness as those with any other illness.

• It started with the option of having care close to home.

• Some people did better in the community with the proper support and services.

Cons

• People were just released from institutions with no plan for follow-up care and no housing, causing them to become homeless or incarcerated.

• Over 30 percent of the homeless population has a mental illness.

• Of the 300,000 individuals in jails and prisons, 16 percent have a severe mental illness.

• Three times as many people are in jails and prisons as there are in hospitals

• Staying compliant with treatment can be a challenge. About 3 out of every 4 individuals who are neuroleptic-responsive become non-compliant with their treatment plan within 24 months of discharge.

• There is an inadequate amount of affordable housing with appropriate support, such as group homes and supervised apartments.

• It costs tens of thousands of dollars to house people in the community with adequate support.

• Some people just don't respond to community-based treatment and need more intensive care to succeed.

  
  

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SafeWards

SafeWards model

SafeWards is a nursing care model on psychiatric units, designed to reduce restraints, seclusions, and other containment strategies. 

SafeWards consists of 10 interventions described below:

1. Clear mutual expectations: guidelines for both service recipients and staff, which are not meant to feel like a child’s rules
2. Soft words: therapeutic limit setting designed with respect and negotiation in mind
3. Talk down: diffusion using words, not hands
4. Positive words: staff understand why difficult behavior occurs, and staff discuss positive things about each service recipient in shift reports to combat bad feelings about certain service recipients
5. Bad news mitigation: identifying service recipients who may have received bad news and allowing them to “vent” using active listening approaches
6. Know each other: staff and service recipients provide written information on themselves to use for conversation starters, kept in a binder in the unit for staff and service recipients to view.
7. Mutual help meeting: structured community meetings designed to help each other out with 5 sections, including thanks, news, suggestions, requests, and offers
8. Calm down methods: Before giving PRN medication, encourage the use of traditional coping strategies 
9. Reassurance: after an “incident”  (self-harm, aggression, restraint, seclusion, transfer to a more restrictive setting, etc.) in the unit, all service recipients are talked with to allow them to process the event 
10. Discharge messages: upon discharge, each service recipient writes a special card to be hung in a special place on the unit, about what they liked and disliked on the unit, the staff, and things that happened on the unit (without breaking confidentiality), to show to new service recipients to decrease hopelessness

The more we prioritize these interventions, the less conflict will be present, and as such, less upset, restraint, seclusion, and other containment strategies will be needed. 

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Continuing Care Residential Facility

 I believe we need a non-institutional residential facility designed similarly to a continuing care retirement community with various levels of care that individuals may move through as their needs change; yet, continue to remain with the same treatment team, recommendations, diagnostic assessment, and a familiar environment for those with Autism and/or mental illness and challenging behavior. This type of facility should be run by a nonprofit provider agency or hospital network, not the State, to prevent it from becoming an “institution”. 

Levels of care at this type of facility should include: 

• Forensic Care Units: designed similarly to a therapeutic correctional facility for those with criminal charges
• Intensive Care Units: designed similarly to a forensic facility but with more of a focus on rapid tranquilization using antipsychotic medications and behavior modification, for those with extremely chronic, dangerous behaviors and who fail or get "kicked out" of less restrictive programs
• Inpatient and/or Dormitory Units: service recipients live in a large building with locked and unlocked units 
• Campus Residences: individuals live on a large piece of land in cottages or small dormitories 
• Supervised Apartments: service recipients live in individual apartments with 24-hour staff in a large disability-only apartment complex

This type of facility will increase continuity of care, as the same treatment providers will possibly follow service recipients throughout their time at the facility. It is intended for long-term, lifelong placement, and the individual will receive "Active Treatment." It should not be restricted to those with an IQ under 70, and higher-functioning and lower-functioning service recipients will be admitted to different sections of the facility to allow for appropriate treatment. 

Funding streams may come from the State developmental disabilities agency (possibly as an Intermediate Care Facility for Intellectual Disabilities [ICF/ID]), mental health agency (possibly through its own funds as Medicaid will not fund a psychiatric facility larger than 16 beds), Medicaid (possibly as an Intermediate Care Facility for Intellectual Disabilities [ICF/ID] or Skilled Nursing Facility [SNF]), and more. 

This will be ideal for those who do not succeed in group homes because of their behavior. However, we do not want to make this a prerequisite for admission to a continuing care facility like this. We do not want to wait until someone fails before considering them for a facility like this. 

When the individual receives treatment aimed at reducing challenging behaviors, their challenging behaviors may decrease, and they may move to a lower level of care within the facility. Yet, when there is a crisis or escalation of challenging behavior, they can easily move to a higher level of care without going to the hospital and without police intervention. 

This type of facility will also be ideal for those with primary mental illness (standalone or with a developmental disability) who are discharge resistant or who face significant barriers to discharge due to chronic higher-acuity behaviors, as an alternative to a State institution. Oftentimes, psychiatric hospitals and units only stabilize medications (not provide behavior modification). They only provide acute care, and these individuals have chronic behavioral problems. A facility like this could help supplement the care given in a psychiatric hospital or unit when a State Hospital is not appropriate, including for forensic service recipients. It is widely known that short-term psychiatric hospitalization only causes more disruptions in the lives of those with Autism or severe mental health challenges, and it is also known that short-term psychiatric hospitalization may reinforce the challenging behaviors that led to it. As of yet, there are no better alternatives. 

This type of continuing care facility is an alternative to resolve all these problems.

My Official Views on the Use, Misuse, and Abuse of Restraints and Seclusion

Just posting this because there seems to be confusion about my views on restraints and seclusion. I am opposed to restraints and seclusion when it is not needed. However, when there is a clear and imminent danger to the service recipient or others, I highly support restraints and seclusion as a lifesaving measure, just like CPR for cardiac arrest. The commonality between CPR and restraints is that they are only used when necessary and all else fails, and are avoided when safe to do so 

While restraint and seclusion are not ideal, they cannot be eliminated. However, they can be reduced by changing the culture in our facilities. When done appropriately, safely, and correctly, they can be lifesaving interventions. 

For instance, if someone is banging their head and staff cannot stop them from doing so, they could go blind from detaching their retinas or suffer seizures or death from the neurological consequences of the behavior. 

We need more trauma-informed care and safe and therapeutic crisis intervention. 

Some service recipients find restraints and seclusion soothing. We need to teach these individuals other coping mechanisms that are more adaptive in the community that meet the same needs that restraints and seclusion are meeting. 

We need to track and trend antecedents to these adverse events on a weekly, monthly, quarterly, and annual basis. 

In my experience, nurses will restrain or seclude individuals they dislike more than those they like. Also, service recipients who “cause trouble” will be restrained or secluded for excessive periods.  Nurses and staff sometimes purposefully escalate a crisis, so they have an excuse to use restraints and/or seclusion. This is unacceptable, inappropriate, and should be considered abuse  

Nurses should not be allowed to combine seclusion and restraints by locking the door to a room where someone is restrained and having staff watch them via a surveillance camera. This is unsafe, inappropriate, and potentially frightening for the restrained individual. 

Until we wholeheartedly adopt the philosophies of psychiatric rehab, trauma-informed care, and person-centered treatment, we will continue to rely on restraints and seclusions. We need to try a different approach to crisis intervention, one that we are not used to. This is the only path to reducing and eliminating restraints and seclusion. 

Restraints do not teach anyone new skills, and they are little more than a punishment for bad behavior. 

Restraints and seclusion are traumatizing, both emotionally and physically. Service recipients can sustain serious physical injuries when restraints are used improperly, sometimes worse than the behavior that prompted restraints. 

Nurses need to take the time to listen to service recipients about their thoughts and feelings regarding the incident. Restraints are especially harmful when the service recipients do not know why restraints or seclusion were used, and what to do next time to avoid a similar situation. 

Centers for Medicare and Medicaid Services (CMS), The Joint Commission, CARF, and other accrediting bodies need to weigh in on the abuse and misuse of restraints and seclusion. 

We need crisis teams comprised of peer specialists, nurses, psychologists, psychiatrists, therapists, and therapeutic security officers to help de-escalate crises, hopefully without restraints or seclusion. More peer support specialists are needed at a higher or equivalent ratio to the direct care staff. 

In conclusion, restraints and seclusion should be a last resort intervention in a dangerous crisis. They should be thought of as a “treatment failure” rather than a “treatment intervention”; however, when needed, they should be available. It’s a tricky balance. 

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