Despite a growing understanding that community-based services were a better choice for individuals than institutionalization, switching from a consolidated and hierarchical system to one of many service providers helping smaller numbers of clients follow personalized plans for success was difficult, and the path forward had many hurdles to overcome.
Some problems were structural: for almost a century, people with developmental disabilities and their families had only one choice to access care – Pineland. Building new programs in the community, including licensing and regulatory systems to protect clients, was a daunting task.
Other problems were societal. There was and is still much stigma around developmental disabilities, and many people in communities held strong beliefs that those with such disabilities would never be able to live lives of self-determination – either because they felt that people with disabilities would always be exploited, or that people with disabilities would be safety risks to either themselves or the larger community.
During the early years of the 21st century, state budgets were impacted by federal tax cuts, forcing states to cut funding for many services, including services for people with developmental disabilities. During the budget negotiations of 2004-2005, advocacy groups fought to fend off the worst of the cuts, including ones to early childhood services.
In 2007, under Governor Baldacci, a new system of determining reimbursement rates under MaineCare began a cascade of rate cuts that would continue for a decade.
From the beginning of the institutional period, the cost of providing care for people with developmental disabilities was both the reason for building larger and larger congregate settings and an excuse for any evidence of neglect or poor treatment that came to light.
Throughout the history of Pineland you can see the frequent requests for more funding. When Pineland was closed a new pool of money was flooded into the community. This followed a series of cuts and the same types of pleas for additional funds that can be seen through the institutional period.
To this day, disagreements over the amount of funding put towards services plague this system. Reimbursement rates and workers’ paychecks, infrastructure and innovative care – the question of “how do we pay for this?” hangs over all the decisions made.
Who and what do we value in our society? How do we determine someone’s “worth”, and whether they are deserving of help when they need it? Are all people really equal – and do we treat everyone as equally human?
People with developmental disabilities were sent to institutions because they were seen as useless or even dangerous to society. Their value in a place like Pineland rested on their potential for being trained to do menial labor – a Pineland resident could potentially get a furlough or even release from the institution if they could show that they could work.
In general, people with developmental disabilities throughout our history have been dismissed, patronized, and dehumanized. Doctors assumed that people with developmental disabilities didn’t feel pain, caretakers believed that they did not need friendships or hobbies or someone to communicate with, and society saw them as dangerous and unfit.
There were also people and moments in history that shifted our assumptions about the value of people with developmental disabilities – President Kennedy’s experience of loving his sister with disabilities led to huge policy shifts that impacted people with developmental disabilities across our country, and the brave self-advocates who organized a civil rights movement led directly to another president signing the Americans with Disabilities Act.
The question must be posed, what is the value of all potential members of the community, with or without disability, to the very health and fiber of the community?
The bulk of the labor that supports people with developmental disabilities has historically been done by “low wage” earners – high school graduates or those with associate degrees working for minimum wage or very close to it. In addition to “low wages”, society at large can view the job as low skilled and akin to “babysitting.” In addition to a lack of workers to fill the shifts and perform the vital tasks, those that are employed in this field often feel undervalued and overworked. Expectations are low – and services suffer as a result. People with developmental disabilities often don’t get the supports they need from the staff hired to serve them – and the behaviors and reactions that may occur with this lack of support can then lead to abuse and neglect, including an overdependence on traumatic interventions like restraint.
Good direct care providers are also promoted to “supervisor” roles without the training and skills needed to support direct care workers (as the skillset of the two jobs are not the same.) Of course, this assumption of the skills is simply untrue. The lack of value placed on those doing this essential work has led to labor shortages again and again.