People with Intellectual Disabilities have been isolated for hundreds of years, and COVID-19 has just set that isolation factor back by fifty years. Anyone looking at the history of the ICF/IID programs - Intermediate Care Facilities for Individuals with Intellectual Disabilities will realize that COVID-19 has pushed back our timetables to at least the mid-1960s.
In the United States, during the 1950s through the mid-late 1970s, isolation of people with Intellectual Disabilities (ID), at that time called "Mental Retardation," was the standard practice. If someone had a diagnosis of ID, he or she was routinely referred to a large institution. Often, referral to a large institution meant separation from family, the public, public schools, and even public places such as physician offices, churches, and clinics. In fact, that isolation even extended beyond death in some cases with isolated morgues and graveyards located on institutional campuses. A person with ID could go his or her entire life without ever having contact with anyone outside of staff and peers in their home setting.
The exposure of Willowbrook literally shocked the world and especially the United States. In the 1960s, Civil Rights movements had focused on equality for all people. This equality meant equal assess to public accommodations such as physicians, hospitals, schools, and other public places. While the implementation of the Civil Rights was still in process and can be argued to still be on-going even today, it was apparent from the Willowbrook state facility in New York that people with ID had been overlooked. Out of this oversight came dozens of federal programs, including the ICF program, designed to get people with an ID diagnosis out of institutions and into community access.
Since the 1970s through the 1980s, 1990s, 2000s, states across the nation have worked to meet people's rights and access with ID. Things like grocery shopping, church attendance, access to public schools, college, and public facilities and services such as physicians, libraries, and parks have worked to accommodate people with ID. Inclusion became the keyword. IDTeams (Interdisciplinary Teams) worked to find ways to secure community inclusion. The work completed during this time set new standards, broke down barriers, and opened doors. Suddenly people with ID were no longer being separated, segregated, or ignored. Suddenly, people with ID graduated from local high schools, participated as board members, lived in communities, attended church, visited with their doctors at the doctor's office, and even set up final preparations and were buried with other non-disabled people in local graveyards. In a few decades, separation and seclusion were replaced with community inclusion and participation in life.
In March of this year, the unthinkable happened. A pandemic of COVID-19 spread rapidly across the United States and devastated the community's inclusion progress. Most states almost immediately "Locked Down" long-term care facilities. These emergency precautions instantly affected the ICF. Suddenly there were no church services, schools were closed, shopping was not allowed, and even something as simple as a trip to McDonald's was limited to a drive-thru.
In Texas, ICF programs were required to have staff wearing PPE. The people with ID, living in their own homes, were and still are, required to wear face coverings when out of their rooms. No visitors were allowed. No unnecessary trips or medical follow-ups were permitted. The state quickly enforced new Infection Control procedures, isolation procedures, and quarantine procedures.
The effects had the outcome that anyone would and should expect. After decades of having their rights, freedoms, and community inclusion ignored then finally given by the government, the government came in and removed those rights, freedoms, and community inclusions. In a simple fact, the government took away the one thing that so many people with ID cherished. Was it right? Was it wrong? Who knows the answer as history will have to judge our generation for what was done in the name of protecting people. The fact is, the government did not take away those rights, freedoms, and inclusions lightly, and it was done with the best of intentions to protect people with ID. Only now, ICF programs are just starting to have the opportunity to "Open Up" again with specific plans in place.
While it may have been the right thing to do and it may very well have been needed, the fact remains the people with ID have had the hardest time dealing with this crisis. Some have been happy and understood the need for restrictions. Others have cried and literally screamed because they miss family, friends, church, outings. The staff and those working in the field continue daily to talk, counsel and reassure that this restrictive atmosphere will not last forever. Regardless of the facts surrounding COVID-19 and the restrictions that had to be placed, the bottom line remains that we have set people living in ICF programs back by fifty years or so in their collective timeline. Their battle for rights, freedoms, and community inclusion is perhaps fresher than any other population living in the United States. Maybe it's the fact that the rights, freedoms, and inclusion they gained so recently were impacted so soon needs to be remembered the next time anyone considers restricting them and how those restrictions are implemented.
