Smaller Budgets and Bigger Waitlists

The second decade of the 21st century brought big changes to state government. An economic downturn and a new administration elected alongside others in an austerity-based, small government movement led to budget cuts and staffing freezes at the Department of Human Services. In 2016, a new set of cuts were made to the MaineCare reimbursements that paid for daily living supports for people with disabilities, further exacerbating chronic staffing shortages.

Over this decade, waitlists for services exploded, especially for Section 21 services, which serve those who need daily support to live full lives. Investigations of abuse by Adult Protective Services stagnated, with concern expressed by the Maine Developmental Services Oversight and Advisory Board: “When staff of the [advisory board] contacted, or tried to contact the investigator or the supervisor to find out the status of the investigations, no calls were returned” the board wrote in 2016 comments to the state.

Early Intervention services, tasked to identify young children with developmental delays and provide interventions to mitigate those issues, also came under scrutiny during this time, with data from 2016 showing that Maine ranked among the worst states in providing screening and services to this vulnerable population. Administrative changes and lack of federal support also played roles in a system that left many young children unable to access desperately needed supports.

Towards the end of the decade, another symptom of systemic failure arose: a growing number of people with disabilities in crisis ending up in emergency rooms instead of getting dedicated crisis services. Headlines like “Maine’s forgotten adults adrift in ‘a system in crisis’ after years of neglect” and “Hospitals Struggle To Keep Developmentally Disabled Mainers Out Of Emergency Rooms” highlighted the plight of people with disabilities in an underfunded and uncoordinated system.

Service providers and advocates feared the creation of “mini-institutions, mini-Pinelands, all over the state” (Portland Press Herald, “Maine used to be a leader in caring for adults with intellectual handicaps. What went wrong?”, December 12, 2016)

Theme Alert!

Money

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.

Values Check

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?

Waitlists

Waitlists have occurred since the very beginning of services. Many people who could benefit from services to live more supported and independent lives instead languish on waitlists.

In the past, superintendents of Pineland used the need of more beds as an excuse to call for a larger institution.

Today, waitlists for services are an ever-increasing problem. Children, despite a diagnosis can’t access the inventions that could change their lives and as a result, their needs often become so challenging that they end up in significantly more restrictive and costly placements than they would have needed if they had gotten the right service at the right time. Young people who have been supported through the school system can find themselves waiting years to access adult services. People in the disability field call this period “the cliff” when youth are without services and supports and many of the skills that they worked so hard to achieve begin to erode and their future feels like it might slip away. Adults who have services learn that they are stuck in poverty, single, or unable to move as their services may be at risk if they make to much money, get married or move. Life decisions that most of us view as our right can mean starting the process of securing services all over again, making opportunities to grow and be fulfilled as an adult also fraught with anxiety.