Last week, our governor dedicated a memorial to a community the state destroyed in 1912 at what is now Pineland Farms. The memorial honors the former residents of Malaga Island who were incarcerated at the Maine School for the Feeble Minded after the island’s population was evicted. This memorial, the institution and the subsequent Pineland consent decree are stories most Mainers have forgotten.
I, like most, knew that the Pineland decree had created legislation and programs to improve services for Maine’s often forgotten adults with developmental disabilities. What I didn’t know was how poorly funded and managed these programs are in the present day and that Maine has no plans for how to fund these services in the future.
I managed social policy programs in Ireland for almost 10 years. After moving back to Maine in 2015, I temporarily supervised a residential program for adults with intellectual disabilities regulated by section 21, a section under the state’s Medicaid program, or MaineCare, that regulates services for people with intellectual disabilities. My sister has Down syndrome. She is lucky to have a family capable of providing financial and day-to-day support while she lives a relatively independent life. The former residents of the Pineland hospital, Augusta Mental Health Institute and other facilities usually don’t have family advocates. MaineCare reimburses providers of residential care for hourly billable services provided by direct support professionals.
There is a huge shortage of direct support professionals because of low pay, hard working conditions and unrealistic expectations placed on the position. The staff I supervised made between $10 and $11 an hour. We didn’t pay additional money for those with experience. Direct support professionals supervise hygiene, nutrition, medication, personal safety and personal finances. They frequently deal with verbal and physical assaults, personal hygiene issues and clients with histories of trauma, neglect and abuse. They have no medical training and many have no experience with people with disabilities when hired.
As Maine’s population of adults with disabilities gets older, direct support professionals have increasingly severe medical issues (physical and mental) to handle, and they very often work long hours with little support. I regularly had to ask overnight staff to stay through the day to cover staff shortages. Direct support professionals are expected to develop relationships with individuals who often have challenging behavior in order to support them as they learn and use life-skills identified in their person-centered plans. This is as difficult as it sounds and requires time and communication. High turnover, limited English-speaking applicants, and an emphasis on documentation does not create a stable workforce available to develop relationships with clients.
I met social workers, care staff and certified residential medication aides with years of experience, relevant degrees and great personal qualifications working in the field. But I couldn’t offer them more money, responsibility or even respect. They stay because of a commitment to equality and dignity for their clients. This is selfless, but employment shouldn’t be selfless and rights-based services shouldn’t be operating on the charity model of disability in 2017.
The Maine Coalition for Housing and Quality Services, a 4,000-member advocacy group, described this as a “system in crisis” based on 2016 research of 49 providers of intellectual and developmental disability services in Maine. The study found a turnover rate that ranged from a low of 11 percent to as high as 70 percent, with an average just over 30 percent. It was impossible to find adequate staffing to fill the 24-hour schedule at the residential program where I was a supervisor. I never once had a weekly schedule staffed at the full hours allocated per client due to turnover and the dearth of applicants.
The clients with the highest level of need reside in group homes and, according to a June BDN article, 24 homes have closed over the past year because of staffing shortages. Not only does that leave 69 people with intellectual disabilities effectively homeless, but in my experience, it leaves hundreds more with inadequate care and support to live with dignity and equality in our community.
While I realize the sector is urging for increased funding for direct support professionals under LD 967 (and the Maine Department of Health and Human Services is opposed to the bill), as a sister of a woman with Down syndrome and a former staff member in a direct support agency, I don’t think a few dollars increase in direct support professionals’ wages will address the systemic issues of concern in the section 21 residential program. Maine has the oldest population in the U.S., and we have a rapidly aging group of elderly and middle-age adults with intellectual disabilities with increased medical needs who are beyond the skill and experience of most direct support professionals.
The Department of Health and Human Services seems to put a higher premium on documentation than providing specialized nursing care to support clients as their needs change. The purpose of the quagmire of documentation produced for and by the agency is to provide oversight. Adult Protective Services, part of the department’s Office of Aging and Disability Services, has responsibility for investigating reports of potentially dangerous situations made by care and agency staff.
I filed dozens of “reportable events” in the eight months I managed direct support professionals. The “events” could be a medication error, a hospital visit, a small injury, a suicide threat or staff leaving clients unattended. I didn’t witness Adult Protective Services investigate any of the reports, and my employer assured me this was standard procedure.
The Pineland decree was lifted in 2010 because Maine had created Adult Protective Services and an oversight board to ensure the state fulfilled its protection obligation. The Maine Developmental Services Oversight Advisory Board’s chairman, Cullen Ryan, told the BDN earlier this year that board hasn’t received one investigation report since it formed in 2011.
While many staff in both the Department of Health and Human Services and nonprofit disability sector have spent their careers advocating for Mainers with disabilities, this longevity is not always a bonus when reform is required. The Department of Health and Human Services stumbles from one crisis to the next with no creativity, innovation or leadership. Care agencies can’t recruit or retain qualified staff. Many residents have limited community and family supports outside of MaineCare-funded staff. This environment leaves vulnerable people, many of whom have already experienced neglect and abuse, open to further exploitation.
Meanwhile, we have an existing waiting list of 1,550 people with intellectual disabilities who need housing supports and the state uses Medicaid to fund two-thirds of this mess. Our legislators need to find money to fund LD 967 as a firefighting measure, but more importantly we need to start paying attention to this easily ignored community and holding our state accountable for its lack of planning, reform or innovation.
The physical site of Pineland has been transformed into a beautiful and productive resource, but I fear the institutional neglect of Pineland has taken on a more modern form in Maine.
Colleen Hennessy is a social policy researcher and writer. She previously wrote a chapter in “A Living Countryside?: The Politics of Sustainable Development.” She currently manages a U.S. Department of Housing and Urban Development-funded municipal housing program. You can read more at colleenhennessy.com. Follow her on Facebook at Colleen Hennessy or on Twitter at @colleenhenness4.