Maine Disabilities Nonprofits Report Swelling Waiting Lists and Shrinking Rates

December 4, 2016; Portland Press Herald

The Portland Press Herald portrays Maine as having once been a “model state” when it comes to serving adults with intellectual and developmental disabilities (I/DD). “Maine was a state to look up to,” says David Burbock, professor at the University of Colorado and state-by-state disabilities services researcher. Now, advocates fear that service capacities are on the verge of collapse due to a perceived systematic, whittling away of Maine’s reimbursement rates, said to have been slashed by 12 percent since 2008: “When factoring in inflation, the cuts represent a 31 percent reduction.”

In the past several years, Maine has been turning the clock back on these adult services, advocates say, leaving thousands of adults with autism, brain damage, Down syndrome, and other [I/DDs] vulnerable. Leaders of nonprofits say the system of community-based services is on the verge of collapse.

The Portland Press Herald reports that pending changes in the state’s funding formulas are expected to lead to additional 5 to 7.5 percent cuts. These cuts risk being a major blow to systems providing group home services for adults with I/DD. Outcomes include higher turnover rates of already-underpaid staff, service reductions, and residential closures. Todd Goodwin, CEO of the nonprofit Community Partners in Biddeford, argues that Maine’s 60 percent cuts (from $6 million in 2006 to the current $2.1 million) in group home reimbursements have already posed challenges. The cuts parallel accusations about Maine having imposed several unfunded mandates over the past ten years that increased operating costs for group homes. As Peter Kowalski, president of John F. Murphy Homes in Auburn, says, “It’s a big crisis…if these cuts happen, we will be reimbursed less than what it costs to operate a home.”

How could all this be happening in a state once hailed for its advocacy and support for people with I/DD? Indeed, the closing of the Pineland Hospital and Training Center in 1996 was once hailed “a major victory.” Its closing pushed Maine to the paradigmatic forefront in the downsizing if not complete elimination of such medical modeled institutions. Similar trends in the deinstitutionalization of people with I/DD were already occurring after the exposure of horrid conditions in such institutions as Willowbrook in New York. These deinstitutionalization trends proliferated across states. The National Council on Disability (NCD) cites a study indicating that during the years 1967–2009, the number of people with I/DD “housed in large designated state institutions” dropped from 194,650 to 32,909.

Maine emerged as a national leader in how to provide quality care for this population in community group homes, rather than large institutions.

However, the push for advancing housing alternatives underscored by Medicaid’s Home and Community-Based Services (HCBS) waiver option has led to other types of challenges over the years, despite its theoretical perfection. The HCBS waiver is a funding mechanism that allows states to “waive” regulated requirements by enhancing community-based opportunities for people with I/DD. A portion of the waiver covers 24/7 residential services, while another covers day services and other community-based programs (typically 10-20 hours per week).

The intent behind the residential portion is to move beyond Medicaid-backed intermediate care facilities (ICFs) that house small groups of I/DD residents. The NCD refers to ICFs as being smaller forms of restrictive institutionalized settings. Yet, the risks involved with slashing residential funding mechanisms of the HCBS waiver would cause Maine to move in the opposite direction of national trends indicated by the University of Colorado. Most states are investing more in residential-backed community services for individuals with I/DD. Neglecting funding towards residences could deplete the quality of such services, and cause residences to go back in time towards resembling “warehouses for patients” rather than be vehicles to promote more comprehensive services enriched with community integration, hygiene, and social programs. Braddock says, “these are very negative steps that Maine is taking” and “all of Maine’s trends are going in the wrong direction.”

Samantha Edwards, a Maine Department of Health and Human Services (DHHS) spokeswoman, says otherwise. The Portland Press Herald reports her as praising the outcomes of MaineCare (Maine’s Medicaid federal/state assistance program), calling it “one of the best states in the country for these services.” She says this despite any purported trends from advocates arguing that families face increasing problems trying to access services under MaineCare’s Section 21, the portion covering services for adults with I/DD. This is especially the case for I/DD individuals navigating their transition to adult services, as they are no longer eligible for special education entitlements.

The concern is substantiated by reports of swelling waiting lists building up for almost a decade. While one in four to five adults with I/DD on these waiting lists are qualified, they are told to expect to wait years.

Currently, about 1.200 developmentally challenged adults are on a waiting list. […] That’s a tenfold increase since 2008, when the waiting list stood at 111. The population of adults who qualify for the services has increased, and there are now about 10 percent more adults who qualify for section 21 than 10 years ago, advocates say.

Nonprofit leaders feel that these growing waiting lists lend evidence to their arguments that “the system does not have the capacity to serve its clients.” In a counterargument holding that rate cuts have nothing to do with growing waiting lists, Edwards says that, to her knowledge, people do not risk not receiving services if providers are unwilling to provide care at the current rates.

Meanwhile, nonprofit residential services look back to a time when a standardized rate was developed to negotiate with providers. Roger Deshaies was a former Pinelands employee and DHHS executive involved in lobbying for Pineland’s closing. He says that he was involved with creating what was deemed a “fair and equitable” rate that worked for nonprofits, a rate optimizing services while not overburdening taxpayers. This rate was negotiated after a consent decree granted to family advocates. This 1980s–1990s, post-final-closing-of-Pineland, court-appointed decree monitored the state to ensure quality of care for people with I/DD. It may be no coincidence that this consent decree expired in 2010, a couple of years after the revised rates formula came under attack by the state.

According to Edwards, “proposed rate changes are meant to be a ‘realignment of policy to articulate that each provider must provide 100 percent of services they are reimbursed for’ to address ‘an antiquated Medicaid Policy allow[ing] providers to bill for 100 percent of service, but only provide 92.5 percent of service.’” Goodwin says the margin could enable flexibility for times when extra staffing support was needed in residential services.

Despite Edwards’ arguments about MaineCare service reimbursements for both residential and day services increasing from $278 million to $350 million between 2011-2016, as adults with I/DD being served during that timeframe also increased (from 4,128 to 4,882), the University of Colorado reports bipartisan decreases in spending by 20 percent between the years 2009 and 2015. A clear contradiction. So how should the situation be approached and assessed? Perhaps by reflecting on a less fiscal-trend-focused and more purely humane reminder given in a position that a fellow NPQ newswire writer once took.

Lost in the debate is the concern for the individual. Person-centered planning…is short-changed by system-change advocacy to eliminate specialized-care options for those who need it. […] Advocates must set aside efforts to eliminate options of care and work together to expand options.

—Noreen Ohlrich