Imagine if your family car came in separate parts so that you had to decide which parts were needed, find where you could buy them, and then assemble them yourself. With no overall design for the car and no quality management to make sure the parts fit and determine how well the car is working, what kind of a vehicle do you think you’d have and how would you determine how cost-effective it was?
That analogy impressed a number of people in Maine as they developed their state’s response to the U.S. Supreme Court decision in the Olmstead case involving state efforts to provide services to the disabled in a coordinated, least-restrictive environment.
A report by Eileen Griffin, a research associate at the Institute for Health Policy at the Edmund S. Muskie School of Public Service of the University of Southern Maine in Portland, focuses on efforts to marry the state’s vision of an Olmstead response for coordination and consistency across departments with a sustainable, collaborative governance structure that will incorporate the vision into the workings of Maine’s state agencies.
"While the delivery of human services is considerably more complex than car manufacture," Ms. Griffin says, "comparing the assembly of an automobile to coordinating the interdepartmental delivery and management of human services helps to illustrate the need for investing in collaboration. An automobile manufacturer sees bringing the parts of a car together and assembling them into an automobile as part of the series of steps required to produce a car. . . . In contrast, the assembly’ of the disparate services provided by the state into a comprehensive human services system is seen as either an unnecessary step or something that should happen automatically, without additional resources.
"Interdepartmental coordination and collaboration might be a stated goal, but often departments are not given or do not make available the necessary resources to make it happen. As a result, the specialization’ within individual departments and bureaus results in fragmentation. For a state, the cost of not collaborating means an inefficient use of resources and ineffective services. From the consumer perspective, lack of coordination means frustration, wasted time, and can sometimes lead to more dire medical consequences such as institutionalization or incarceration, poor health, or death," she continues.
Ms. Griffin notes that nothing in the Supreme Court’s Olmstead decision specifically tells states that compliance with the Americans with Disability Act requires cross-system governance. "Yet," she says, "the complexity of ensuring compliance with Olmstead suggests the need for joint action across multiple components of state government." And she identifies three aspects of the Americans with Disabilities Act and the Olmstead decision that certainly suggest that interdepartmental collaboration is prudent, even if not required.
First, the prohibition against discrimination based on disability suggests that people with the same needs for services should not be denied services based on the type of disability they have. For example, a person with traumatic brain injury and someone with mental retardation might both have a similar need for supportive housing. A fragmentary, rather than comprehensive, approach to meeting needs may open a state to what Ms. Griffin describes as unfortunate and divisive battles between different population groups (and across agencies).
Second, under Olmstead, the so-called fundamental alteration defense allows states to defend against a request for services if they can show that honoring the request would involve a harmful reduction in services to other people with disabilities who need institutional care and would lose services as a result. For a fair allocation of resources, Ms. Griffin says, states have an interest in developing standards for defining and measuring the impact of resource allocations across broad population groups.
Finally, the Americans with Disabilities Act does not attempt to set a standard of care for services a state has to offer. It prohibits states from creating barriers to integration, but does not hold states responsible for eliminating barriers they did not create.
Saw need for collaboration
As a working group set out to develop Maine’s response to the Olmstead decision, it found that responsibility for serving people with disabilities was divided across multiple agencies and departments. In fact, several agencies had been created with the core mission of serving those with disabilities, while other agencies had more general missions but still have responsibilities that affect the services, and a third group of agencies had missions that only indirectly affect those people with disabilities, although in very meaningful ways.
"While the division of labor across agencies can be explained by the need for specialization, the needs of the people served do not fall nearly within the jurisdiction of just one agency," Ms. Griffin wrote. "Findings from focus groups, case studies, and interviews confirm that there are breakdowns in the collaboration between various departments, programs, and services when needs cross agency boundaries."
Five potential breakdowns identified by Ms. Griffin are:
- lack of access to information;
- no comprehensive planning;
- conflicting regulations;
- cross-disciplinary conflicts;
- fragmented services.
Having studied the problem and identified concerns, the work group recommended that the state’s disparate programs and services be brought together into a coherent, comprehensive system, with the state government integrating information, access, and services, as well as the infrastructure for supporting and monitoring the success of the effort.
Features identified as important to implementation of the recommendation include maintaining an interdepartmental focus; maintaining a cross-disability and cross-age focus; involving consumers; reaching local and regional providers with integrated information and referral, access, and delivery of services; providing sufficient resources for investing in improved services, the state staff necessary for developing coordinated policy and tools, funds for developing the capacity to integrate data, training regional and local staff and providers, and sustaining and improving coordinated tools and functions; dedicated staff for collaboration; authority to bring about change in policies and practices; commitment and leadership in both the executive and legislative branches of state government; and a formal mission established in law so the initiative can survive political shifts.
How to make the program work
Ms. Griffin says that the way to sustain interdepartmental collaboration is to recognize and accept the need for investing in collaboration, charge interdepartmental cabinet with addressing needs of people with disabilities, establish a dedicated staff position in the governor’s office responsible for serving as liaison to cross-system collaboration, partner with legislative committees to foster cross-system coordination, designate a consortium of consumer advisors, cultivate an assembly of cross-disability consumer advocates, establish staff positions within departments dedicated to interdepartmental collaborative efforts, develop interdepartmental standards for community integration, and invest in integrating information systems. She tells State Health Watch that the first seven recommendations are interrelated out and it is hard to separate them and set priorities.
In conversations with people in other states, Ms. Griffin says, she has found many who agree that this sort of process is necessary to bring about collaboration.
"People in Maine and many other states have worked at collaboration but it hasn’t been a priority," she says. "Many people are seeing that collaboration is needed so there is a comprehensive approach to service delivery, and it’s important that we change the way we think about these issues."
Asked about the Olmstead committee’s work and collaboration, Disability Rights Center of Maine staff member Helen Bailey expressed frustration that the group had produced recommendations rather than a full-fledged plan. She says that in meetings she attended, agency representatives said they could not commit their agencies to anything and "every time we started talking seriously about collaboration, the agencies became very resistant. They saw our requests as increasing their liability and increasing their accountability. I don’t think all this work will go anywhere. The end result is going to be that on their own, agencies will initiate something — and the consumers will get screwed."
Ms. Bailey says that while some state agencies may be collaborating with each other, they are not collaborating with consumers. She says that consumers "dropped off the committee like flies" so that it is now almost all state employees and people from the Muskie School.
The consumer’s perspective
She questions whether agencies truly understand the consumer perspective, noting that clients may have a supportive relationship with one agency and an adversarial relationship with another.
"I don’t think that the states that talk about collaboration to meet the needs of clients understand the deterrence to getting treatment that comes about as a result of sharing information," Ms. Bailey says.
"Agencies tend to presume motives that aren’t good when clients don’t want to share information. They don’t appreciate how much people fear that they won’t get good care. They don’t understand, for instance, that consumers fear that a general practitioner physician will attribute everything to mental health problems if the consumer allows information about his or her mental health treatments to be shared with the doctor. It comes down to client choice. The less you honor that, the greater the risk of creating a deterrence to service. Why should someone who is subsidized by the state have less of a right to privacy?" she asks.
From the perspective of someone in state government in Maine, Bureau of Elder and Adult Services director Chris Gianopoulos in the Department of Human Services sees the potential for a lot of good to come out of Ms. Griffin’s study and recommendations.
"I think the report was terrific," she tells State Health Watch. "This may be the first time that anyone was able to capture in one place all the complexities involved in attempting to deliver services to and meet the needs of people with disabilities."
Ms. Gianopoulos says the report is particularly important because of an executive order from the state’s governor that the two major human service agencies essentially merge effective next July 1 to make it easier for people to access services. A working group is developing a plan this fall for presentation to the Maine legislature Jan. 1, 2004.
Meanwhile, the work group developing the state’s road map to compliance with Olmstead has completed its public comment process and will be submitting its work product to agencies and the legislature. Ms. Gianopoulos says the collaboration report will help inform the work of both the Olmstead group and the agency merger group.
In many ways, she says, the road map and the collaboration paper are providing a rationale for the merger of the state agencies.
Are there things that will stand in the way of effective collaboration? One concern identified by Ms. Gianopoulos is the nature of the categorical funding that many agencies rely on that can create boundaries and the proverbial cracks through which some people may fall.
In addition, she explains, some systems, such as the one aiding those with mental retardation, have been driven by families over the years and have a strong constituent base, while others do not have such support.
Ms. Gianopoulos says it’s hard to bring disparate systems together because people are fearful that they will lose the gains that they have fought long and hard to win.
"[Collaboration] is a lovely theory, but the closer you push systems together, the more the disparities come into focus," Ms. Gianopoulos points out. "People need to be aware of that so they aren’t taken by surprise when issues surface. But despite all the problems and challenges, collaboration has to happen because it is unconscionable what we put people through now to get the services they need."
[For more information, contact Ms. Gianopoulos at (207) 287-9200; Ms. Griffin at (207) 780-4813; and Ms. Bailey at (207) 626-2774.]