Services for people with intellectual disabilities have come along way since the 1960s but face a regression back to inadequate staffing and lower quality of care without immediate intervention.
Yesterday: The plight of our brethren
“It is our belief that now that our indefensible practices have been laid bare for public scrutiny, men of good will from all walks of life and all professions will sit down at the planning table and seek solutions to the plight of our brethren.”
In the 1960’s and 1970’s America had an awakening. It was a social movement for people with disabilities. For centuries, people with intellectual disabilities had been living in large institutions. At the time, these institutions were referred to as “institutions for the mentally retarded” or “asylums for the feeble minded.” In many cases, the conditions in these institutions were deplorable. Burton Blatt, an advocate who set out to change these conditions, famously visited many of these institutions with a still-frame camera and wrote about his observations.
Burton Blatt: Author of a "Christmas in Purgatory: A photographic essay on Mental Retardation"
The opening lines of Blatt’s photographic essay, “Christmas in Purgatory” were haunting, “There is a hell on earth,” he wrote, “and in America there is a special inferno. We were visitors there during Christmas 1965…” Through his observations and experiences, Blatt came to recognize that no one person was to blame for the circumstances and conditions inside these institutions. Indeed, in most cases, the staff and administrators of these institutions were over-worked and under-funded. Blatt noted that in at least one instance, just two staff members were left to care for nearly 100 individuals with intellectual disabilities. Ultimately, Blatt realized that the problems in these institutions could only be solved by large-scale systemic changes to the way we view and treat people with intellectual disabilities. He concluded, “It is our belief that now that our indefensible practices have been laid bare for public scrutiny, men of good will from all walks of life and all professions will sit down at the planning table and seek solutions to the plight of our brethren.”
Through the tireless efforts of Blatt, US Senator Robert Kennedy, news reporter Geraldo Rivera and many other advocates, the collective conscience of America was awakened and a social movement began. Americans came to realize that the tragic conditions in which people with disabilities were living was unacceptable. Gradually, over the course of the ensuing decades, almost all of these institutions were closed and new funding steams were approved to support people with intellectual and developmental disabilities in the community. These funding streams were largely created in the 1980’s and were left to individual states to maintain.
Today: Our neighbors in need
Today, most adults with intellectual disabilities live in our communities. They live in typical houses and apartments, just like where you or I might live. They pay rent, hold jobs, make friends, and have families. They are our neighbors; our “brethren” as Burton Blatt might put it. Fortunately, gone are the days of large institutions with hundreds of individuals on a floor being cared for by just a few attendants. But, many of our disabled neighbors still need support, and their needs are sometimes imperceptible to outside observers. The social movement for people with intellectual disabilities is still progressing.
Most adults with moderate or severe intellectual disabilities need significant support from in-home caregivers to help them with activities of daily living. In some cases, the caregivers are non-paid family members. In some cases, the caregivers are live-in host providers or host families (sort of like adult foster care). And in some cases, the caregivers are hourly-paid caregivers known as Direct Support Professionals or DSPs. DSPs help people with intellectual disabilities in various ways like: helping with basic hygiene needs, supporting them to successfully hold a job, assisting a person learn how to communicate more effectively, or supporting them with difficult behavioral challenges. Watch the video below to get a sense of the types of things DSPs do:
The ongoing social movement
“the plight of our brethren”
People with intellectual disabilities rely on skilled, caring Direct Support Professionals. Right now in Utah, there are thousands of people with disabilities who rely on their DSPs. These DSPs are employed by community providers who contract with the State of Utah to provide this support. Without these providers and their DSPs, many people with intellectual disabilities would be in crisis. In the worst cases, they would be neglected, homeless, or incarcerated.
Sadly, there is a severe crisis happening among the DSP workforce. The funding streams that were created in the 1980’s in response to the closing institutions are in need of urgent updates. The State of Utah has done an admirable job increasing rates for these services over the decades to keep up with inflation and other cost of living increases. However, urgent action is needed now in response to a nation-wide labor shortage that is having a dramatic and negative impact on the DSP workforce.
Many local and national news stories have been published in recent months highlighting how an increasingly competitive labor market is impacting industries like restaurants, warehouses, food production, and call centers [link to stories?]. These other industries are scaling back offered services or limiting their hours [link to stories?]. But, people with disabilities cannot scale back their needs. The value to society created by the DSP workforce is incalculable, and certainly worthy of every bit the same attention as these other industries. In order to recruit and retain quality DSPs, providers need to increase their wages and benefits for this most essential of services. And, the only way for providers to do this is for the State of Utah to raise the legislatively set rates they pay for these critical services.
This is the next step in the social movement for people with intellectual disabilities. Just like Burton Blatt called upon the collective conscience of America to respond the “plight of our brethren,” we call upon men and women of goodwill everywhere to sit down at the planning table and seek solutions to the plight of our neighbors. They are at risk of losing their essential Direct Support Professionals, and they need urgent legislative funding from the State of Utah to do so.