Deinstitutionalization is the gradual relocation of individuals who reside in long-stay residential facilities that typical confine and segregate individuals with disabilities. These health issues may involve physical, mental, or developmental disabilities that prevent a “normal” integration into community life. Institutions create a regimented culture that processes people into groups, discouraging individuality, while imposing mass treatment options by hiring staff to become caregivers.
It is not unusual for institutions to limit the number of possessions that a client can have at any given time. There are also fixed, highly-structured schedules that use fixed times for eating, exercising, and entertainment regardless of what their individual needs or preferences might be during the day.
When people live in an institutional space, there is rarely any privacy and never any personal space. These individuals are forced to live with people that they do not choose and may not like. Some facilities might even ban the development of personal relationships or the pursuit of individual hobbies. Large- and small-scale operations both create these conditions.
The process of deinstitutionalization offers several pros and cons to consider in the quest to provide these individuals (not clients, residents, or some other “polite” reference) the life and rights they deserve.
List of the Pros of Deinstitutionalization
1. It gave people the same rights as anyone else who was sick.
As we began to see mental illness as more of a sickness than a disorder that deserved to have people locked away, deinstitutionalization provided access to their individual rights that were often stripped away in the United States. Instead of creating a culture that almost demanded families to send their loved ones away, there was an effort to integrate everyone into society wherever possible.
Although this was a challenging experience for people with severe mental illnesses, those with high-functioning disorders, Down syndrome, and similar conditions found it possible to live independently, obtain a job, and live a fulfilling life.
2. It created options for localized care.
Before there was an emphasis on deinstitutionalization, states were operating large institutions that were sometimes hundreds of miles away from where a family lived. There was no option to live closer unless the loved ones of the individual with mental health concerns or disabilities went with them to the new communities. Ending this practice allowed for better localization of care while creating opportunities for small businesses to begin provided targeted in-home services.
3. It provides an opportunity for more family involvement.
The process of deinstitutionalization allowed for family members to have more say in the treatment plans created for their loved ones. Some of the institutions throughout the United States didn’t even allow visitation rights in some circumstances. It was an effort than helped to end the work of forced medication, especially when it involved children, so that there were opportunities to receive an education, grow up with siblings and parents, and have a chance to put together a life that they wanted to pursue.
4. It placed the focus on treatment instead of separation.
One of the most significant advantages that occurred with the processes of deinstitutionalization was that it placed a focus on the treatment a person needed instead of separating them from the rest of society. Some people were wallowing in institutions for decades with no real treatment or care beyond getting three meals per day, access to an entertainment room, and a chance to use a toilet.
When many of the institutions closed, communities had to re-center themselves. Even though some of the people released because of deinstitutionalization could not live by themselves, there were ways to come together so that a successful integration could become possible.
5. It allowed people to fare better than they would when marginalized.
The human arguments for deinstitutionalization are always the most compelling, whether you lean more toward the pros or the cons of this subject. What we do know is that when an individual is given the correct level of support in their home and community, then they are much more likely to thrive in that environment. Large institutions where many would have spent their entire lives in past generations would have created downward trends that were almost impossible to reverse.
List of the Cons of Deinstitutionalization
1. People need help to create a life plan instead of going through a general release.
Many of the individuals who experienced deinstitutionalization didn’t have a way to adapt to their new way of life when released from their living arrangements. From 1955-1994, almost 500,000 people were discharged from state hospitals even though they were mentally ill, lowering the number of patients receiving treatment in the United States to 72,000. By 2010, there were only 43,000 beds available for care. That was the same ratio as there was in 1850. States were saving money, but people were not ready for the demands of life – so they committed crimes, moved in with family, or disappeared entirely.
2. It reduced the amount of care that people received.
As a result of the emphasis on deinstitutionalization in the United States, there are an estimated 2.2 million people who have a severe mental illness diagnosis that aren’t receiving any form of psychiatric treatment. About 10% of this popular suffers from a bipolar disorder or schizophrenia and is homeless. Over 30% of the homeless population in the U.S. has at least one diagnosed or undiagnosed mental illness.
There are another 300,000 people in prisons or jails, with 16% of inmates having a severe mental illness. The effects of deinstitutionalization have caused there to be three times as many people in prison as there are in hospitals.
3. Improved rights created a hinderance to treatment.
The regulations that help to protect the rights of people with physical, mental, or developmental disabilities also work against the need to provide treatment to some individuals. Judges in the United States are not permitted to order someone who is severely mentally ill to stay in treatment unless there is a crime committed and that is a sentencing option in their jurisdiction. Families cannot commit someone to an institution unless they’ve proven to be a threat to themselves or someone else.
Americans are even prohibited from removing firearms from individuals who have a diagnosed mental illness. The laws are simply out of date.
4. Taking psychoactive medications can be challenging.
There can be disturbing side effects with some psychoactive medications that create hesitation in the modern patient from taking them to alter the course of their illness. Some families have a fear of tardive dyskinesia, so they encourage a stoppage in the prescribed treatment plan. There can even be a denial of illness that discourages the severely ill from taking what they need to encourage remission.
It is not unusual for people and families who manage disabilities to think that becoming part of the mental health system in the United States is a representation of failure. This attitude toward deinstitutionalization often leads to substance abuse disorders as individuals attempt to self-treat their condition.
5. Caregivers in the United States are gaining rapidly.
There are more than 730,000 people who have some type of disability who are living with a caregiver who is over the age of 60. Many of those who require some level of support for their diagnosis to maintain daily living activities are going to outlive the people who are caring for them. That means proactive interventions are necessary now to prevent a return to institutions later in life.
6. Community-based services can be variable in quality.
The cost-effectiveness of community-based services is already in question throughout the United States because the inflated costs to support a single individual can be tens of thousands of dollars each year. Even though the expense profile of deinstitutionalization is the same in most states, the variability in care quality can create wide gaps of support.
There is an institutional bias that still exists in the U.S. regarding the provision of Medicaid benefits for individuals who have a complex condition. The unemployment rate in this population group is more than double what it is for people without a disability. According to The Arc, the unemployment rate for people with an intellectual or developmental disability can be as high as 85%.
7. Some high-risk individuals do not respond to community-based treatment.
The goal of deinstitutionalization was to eliminate the need to create separated care for individuals with specific needs. One of the issues that we face is the fact that about 3% of the U.S. population can suffer from a severe mental illness during any given year. There is a subgroup within that number that doesn’t respond to the traditional community treatments, which translates to about 1 in every 5 people. This group falls into a category where there is no real agreement on how to provide long-term care, which is why the prison and homeless populations are over-represented by individuals with mental illnesses and disabilities.
8. There is a lack of adequate housing in the average community.
When people receive community-based supports due to the processes of deinstitutionalization, then they typically live in a group home or supported living situation. Although this seems like it should work on paper, it causes people with disabilities or a mental illness to move frequently and received fragmented care. The average person receiving outpatient services, employment supports, and other treatment options has had to move their residence an average of 14 times.
The lack of housing options in some communities can even impede the return to the community for those who have an excellent chance at a successful integration.
9. It prevents the treatment of medical problems.
People who receive the benefits of deinstitutionalization can also struggle to communicate how they are feeling or what they need to become comfortable. 48% of the individuals who are discharged from an institution have at least one other medical problem, often because of the poor health habits that were practiced in their facility. The side effects of their medication can create unique issues that require a treatment plan as well.
The three most common health issues that caregivers manage for individuals who went through the deinstitutionalization are diabetes, hypertension, and arthritis. About half of those with a severe mental illness also have a substance abuse disorder on their access.
10. Noncompliance is a severe problem for many individuals and families.
About 3 out of every 4 patients who are neuroleptic-responsive become noncompliant with their treatment plan within 24 months of discharge. The consequences of this disadvantage account for over 40% of all relapse issues that occur with schizophrenia. It also represents more than 30% of the in-patient costs that families pay. The reasons why people choose not to take their meds can vary, but the results are often the same.
The number of people who have been in a state psychiatric hospital at least once is equal to the percentage of those who are noncompliant with their treatment plan. 65% experience at least one acute hospitalization, with the average being 7 stays over a lifetime.
11. It has created an alarmingly high death rate.
One-third of the people who receive a schizophrenia diagnosis will attempt suicide, with about 10% completing the action. 15% of individuals with a mood disorder will kill themselves, while 42% of the deinstitutionalization population will at least attempt to do so. A majority of those who try to harm themselves will try at least one more time. That means families are living in constant fear.
Individuals with a mental disorder and a history of living in an institution or hospital setting are 15 times more likely to attempt suicide compared to the general population.
Verdict on the Deinstitutionalization Pros and Cons
We used to measure the success or failure of deinstitutionalization by the number of hospital beds that were in use. That time has come and gone. With up to three times more people requiring treatment in prisons than in hospitals, our efforts at creating community-based services are resulting in a different form of using institutions to meet our needs. Some people with severe mental illnesses never go to the hospital.
The importance of individualized care must become the emphasis of future efforts. If families are unwilling to go to the treatment provider, then the service planning tasks must go to the individual if this effort is to be successful.
There are many unique pros and cons of deinstitutionalization that must receive consideration at the local level to determine if it is the best course of action to take. Self-determination can feel like liberation to some, but it can also feel like a sinking ship to others.
Natalie Regoli is a child of God, devoted wife, and mother of two boys. She has a Masters Degree in Law from The University of Texas. Natalie has been published in several national journals and has been practicing law for 18 years.