According to NAMI Pennsylvania Executive Director Jim Jordan, the purpose of the report was to provide a long overdue analysis comparing states’ mental health systems that the organization could use to make suggestions for improving areas of deficiency. The report, he stresses, is not intended to be an attack on political parties, or state or local governments, but rather a unique opportunity for consumers, family members, advocates and the state mental health authorities (SMHAs) to come together and identify both strengths and weaknesses in a three-tiered system of state hospitals, county-level services and non-profit, community-based providers, supplemented by private services, in a uniquely diverse state of two large urban centers and the nation’s largest rural population.

The study analyzed each state’s system relative to three previous reports: the U.S. Surgeon General’s 1999 Report on Mental Health, the President’s New Freedom Commission on Mental Health’s 2003 Achieving the Promise: Transforming the Mental Healthcare in America and the Institute of Medicine’s 2005 Improving the Quality of Health Care for Mental and Substance Abuse Conditions. These reports were the basis for the 39 criteria representing infrastructure, information access, services and recovery supports.

Those criteria were used to score the data Grading the States received from four sources representing the diverse participation Jordan highlighted. SMHAs completed a self-reported questionnaire; scorers evaluated public information including state agency reports and media articles, and interviewed consumer and family advocates; and recipients of services and their relations participated in a Consumer and Family Test Drive (CFTD) that rated the ease with which a user could access information either via telephone or a SMHA’s website.

Despite a D+ grade, NAMI identified as praiseworthy several aspects of Pennsylvania’s mental health care system.

The report commended the state’s push to eliminate the use of restraints and seclusions through improved training that provides workers with an understanding of their patients’ needs and alternative methods of restraint – a move Jordan describes as providing more dignity for both patients and workers.

Pennsylvania has also admirably adopted evidence-based practices (EBPs), most noteworthy being its use of Assertive Community Treatment teams (ACTs). Described by Jordan as "hospitals without walls," the teams provide a wraparound support system of therapy and assistance with housing and medicine issues, allowing the consumer to remain actively involved within the community. Approximately ten of the state’s 20 ACT teams are working under the EBP model.

The use of ACTs represents successful coordination in a diverse system of services within the state that includes state and private hospitals, county services and non-profit community providers. Counties are the first point of contact for almost all consumers of mental health care services. The Mental Health and Mental Retardation Act of 1966 requires that counties establish MH/MR programs with, at minimum, nine services: short-term inpatient and outpatient services, partial hospitalization and emergency services, consultation and education programs, follow-up care for those released from inpatient facilities, training programs, interim care for those awaiting admission to state mental retardation centers and intake, placement and referral services. Admission to one of the nine state hospitals is made through county programs after community services have been exhausted. Consumers who are not eligible for financial assistance, and are either paying out-of-pocket or through insurance plans, can make use of any services; those whose care is financially covered by Medicaid or other mental health/mental retardation funds are eligible for county and state services and non-profit agency care, but will not be financially covered for admission to a private hospital.

The report commended Pennsylvania’s other progressive developments for service providers. The state has developed the Pennsylvania Medication Algorithm Project for Schizophrenia (PennMAPS) – an EBP algorithm that spells out for psychiatrists a treatment process for schizophrenic patients that is based on the recommendations of providers from across the nation. Though currently used only in the state hospital system, the Department of Public Welfare has a long-term goal of both expanding the areas covered as well as developing it as a tool on the community level.

The state has demonstrated equally responsible attention in some areas of patient care, according to NAMI. It has worked to increase treatment capacity for patients suffering from both mental illness and substance abuse. The departments of Health and Public Welfare have developed criteria for mental health and substance abuse facilities to be approved as competent in treating co-occurring disorders. Those criteria include written procedures for assessing co-occurring disorders and a comprehensive plan that includes goals reflecting the presence of both disorders. The Pennsylvania Certification Board has also developed Certified Co-Occurring Disorders Professional and Certified Co-Occurring Disorders Professional Diplomat credentials; it has since trained almost 1,000 persons in these programs.

And – in Allegheny County, at least – prisoners with mental illnesses are receiving improved services upon release to aid their adjustment to reentry, including assistance with Social Security benefits and obtaining medication and housing.

There exist, however, areas that NAMI identifies as "urgent needs."

Jordan gives credit to the state for current funding of mental health care – Pennsylvania ranks second nationally in terms of per capita mental health spending at $195.01 per person, and third in total mental health spending at just over $2.4 million – but says that the state’s mental health needs require additional spending.

Jordan says that funding is an issue throughout the country and emphasizes that the report isn’t attacking or criticizing Pennsylvania’s current level, but is instead suggesting areas of deficiency in a system otherwise adequately funded.

One of those areas is the lack of access to psychiatric services on the community level. Jordan says that many communities do not have any psychiatric services. There’s no reason consumers should remain in hospitals longer than necessary, he argues, simply because it’s the only way those consumers will have access to psychiatric services; instead, additional funds should be used to provide those services in communities.

Additional funding would also provide wage increases to direct care workers – a group that sees high turnaround largely related to pay. Jordan, who says he doesn’t "want to lose direct care workers to McDonald’s because they pay better," argues that better pay increases retention, which in turn improves patient care by creating a workforce of seasoned, better-trained employees who are able to provide a higher level of care.

Jordan’s concern is illustrated by the experience of Susan Brothertown, shelter director of the Salvation Army’s Red Shield Family Residence in Philadelphia. She says the poor using Red Shield’s facilities end up using nearby community-based mental health services that have a high turnover of therapists and doctors, primarily due to issues of low pay. Brothertown says that turnover means consumers are unable to form the deep relationships with caregivers that are vital to proper mental health treatment.

Jordan would also like to see funds support more preventative services as preemptive treatments for consumers.

In response to the needs, NAMI has provided in the report what it sees as a source of funding for those services. It suggests placing the revenue generated by the lease or sale of former hospital sites in a trust that would supplement the mental health resources in the communities those closed hospitals served. Increasingly reduced hospital capacity has resulted in long waiting lists; those who do receive hospital care are often left with no access to additional community-level support.

Even more lackluster than services – which earned a category grade of C- – is access to information. Pennsylvania ranked among the bottom of all states in this area, earning a score of 2 out of a possible 10 on the CFTD and a category grade of D-. Within the CFTD, the state’s Web resources scored a mean 1.67 points out of possible score of 40, a number that indicates that accessing information including "Where to go for help for mental illness" and "How to communicate feedback or complaints to the State or County Mental Health Authority" can be done by consumers within a range spanning "some" to "great" difficulty.

Equal to inadequate funding in terms of repercussions, says NAMI, is Pennsylvania’s lack of a comprehensive blueprint for providing adequate mental health care. Jordan says it is not a lack of planning, but rather the lack of a commitment to plans. He sites as an example the recent closing of the Harrisburg State Hospital. The region had developed a plan based on a five-year set of goals, but the unexpected closure changed that plan overnight without the consultation of those involved in planning and put into disarray a structure on the county level and in the lives of families. If those responsible for changes including hospital closures don’t include planners in changes and share their objectives, he says, the system is left with a plan that nobody can trust will be followed. Highlighting the difference between the state’s planning efforts and a true blueprint, Jordan says: "If I have a map and somebody moves the road and doesn’t tell me, than I don’t really have a map at all."

He says that a thorough blueprint showing plans for hospitals and how consumers fit into that plan with a set of goals and funding guidelines will help counties, the state and providers better know how to deliver care.

Reaction to NAMI Report

Deputy Secretary for the Pennsylvania Department of Public Welfare’s Office of Mental Health and Substance Abuse Services Joan Erney’s reaction to Grading the States is mixed.

Erney agrees with the criticism of the department’s website. She says that the intention was to create an integrated site that would appeal to consumers with integrated needs, namely issues of mental health and substance abuse. Feedback, however, indicated that while the site was well intentioned, it was not successful. The department has since created a communication strategy that incorporates input from consumers, advocates and providers to explore how to provide better access to information through a less-cumbersome, more user-friendly site, especially for those who may not be familiar with the department’s existing resources.

The deputy secretary also agrees that NAMI’s proposal of a land use trust is worth exploring, though no concrete plans are in place to implement such a program.

Erney, however, disagrees with NAMI’s assertion that the state lacks a comprehensive blueprint. The state’s direction, she says, is established in several documents including 2005’s A Call for Change: Toward a Recovery-Oriented Mental Health Service System, mandated annual reports from each county based on local input and the Secretary of the Department of Public Welfare’s recent integration plan for children.

According to Jordan, these documents fall short of NAMI’s expectation of a firm commitment to agreed-upon practices and goals. The county plans represent evaluations of what is and isn’t working well, but contain no proactive commitments. More importantly, the Call for Change workgroup found that the charge of "creating a blueprint" for developing a recovery-based system required efforts outside both the workgroup and the Office of Mental Health and Substance Abuse Services. As the report says, "It is to be considered a ‘living-breathing’ document and not a ‘set in stone’ plan. It is anticipated that it will serve as a foundation for strategic change planning at many levels over time, but it is not a strategic plan in and of itself." To NAMI, that’s not an acceptable blueprint; it wants the plan "set in stone."

But according to Erney, the state is excelling in other areas of mental health care that was not highlighted by NAMI.

The state’s county-based system allows local governments to develop services specific to their populations in addition to those mandated by the state. In rural Greene County, where the stigma of mental health means those suffering avoided care from traditional providers, services have been integrated into community settings like clinics. And in economically-disadvantaged Fayette County, the high adolescent suicide rate led to the development of a program of targeted intervention and problem resolution in schools.

Erney also highlights the state’s valuation of consumer and family input, manifested in the Consumer/Family Satisfaction Team – a group charged with providing the department feedback on its services.

The department is also considering other developments in addition to those recommended by NAMI. Erney says it will continue to focus on integrated systems for both mental health and substance abuse care. And it hopes to have in place by July a peer specialist support system that will provide employment for those with mental health issues as well as reduce incidents of inpatient hospitalization and emergency room visits, as has been demonstrated in other states using such a system.

Within the legislature, Pa. Sen. Pat Vance (R, Cumberland and York) – a member of the Public Health and Welfare Committee – questions NAMI’s identification of funding as an urgent need, citing the state’s high rankings in both per capita and total mental health spending.

Vance is also skeptical of the report’s credibility since unknown "masked" graders completed 71 percent of total scoring – a view she says is based on her experience with anonymous letters from constituents.

Like Erney, however, Vance agrees with NAMI’s contention that Pennsylvania requires better information access for consumers, and she believes that the state’s poor performance on the CFTD – based in large part on such access – greatly impacted its score. In her view, the state doesn’t lack appropriate funding or services, but rather the appropriate vehicle to deliver these in a way that would end what she sees as a mental health disparity among consumers.

Within the provider community, access to mental health care is a key issue. Michael Ogdon, a spokesperson for Montgomery County’s Eagleville Hospital, admits that additional funding is always desirable, but recognizes that the mental health community can only expect so much in a state already committed to high spending relative to others. Like Erney and Vance, however, he says that there’s always room for improvement in terms of access to information, especially among Pennsylvania’s diverse population, but more important is a need for greater access to services among the state’s rural communities.

Suburban Eagleville has a referral pattern of mostly urban and suburban patients, but receives a large number of people from the outlying rural areas. The problem, he says, is that there are people with needs in those areas who because either of age or financial constraints are unable to take advantage of services not offered in the community.

Pennsylvania Psychiatric Society executive director Gwen Loehman echoed those sentiments. She, too, questions NAMI’s claim that funding is an urgent need. For Loehman, the issue is not as much the aggregate amount of funding as it is they way in which money is spent. Psychiatric services, Loehman says, are underfunded, with many psychiatrists handling a number of patients that allows them little time to do more than manage medication. She says that limited time means many psychiatrists are unable to develop the deep relationships with patients required for proper recovery.

Loehman, however, agrees with NAMI that community services are hampered by what she sees as a "disjunction between the system." Service gaps in some areas – usually in the form of a county’s failure to provide a subacute care system or long-term resident program – she says, mean patients often remain in hospitals longer than necessary. The state’s emphasis on community-based service is ideal, but only effective if funds are adequate to support most services for consumers, and the coordination between county services and hospitals is sufficient so that all levers are working together. She cites as an example the state’s bifurcated drug and alcohol addiction treatment system, divided between the departments of Health and Public Welfare and creating a split-funding stream that she says needs to be consolidated.

Loehman also suggests that a parity law that equates mental health treatment with other services already covered by insurers would solve some gaps. That’s a thought echoed by Joseph Rogers of the Mental Health Association of Southeastern Pennsylvania (MHASP). His organization has been working in support of a law that would include mental health services in third party insurer compensation. Too often, he says, consumers not covered by Medicaid are able to obtain crisis care but lack the funds necessary for follow-up care. The effort was given a lift recently with renewed efforts by Sens. Domenici (R-NM) and Kennedy (D-MA) to pass a national parity bill.

The mixed reaction to the NAMI report suggests that many of the changes it proposes will not likely see concrete manifestations anytime soon.

An overhaul of the information access the state provides the consumers of its mental health services seems likely, given widespread agreement on this need, as well as the Department of Public Welfare’s indication that progress in this area can be expected.

Little else within the state’s mental health system, however, appears to be facing any significant reform. Sen. Vance says there is no current legislation proposed or in discussions addressing NAMI’s reform points. Many appear to regard NAMI’s call for more funding as overblown, and with the state legislature lukewarm to the idea of increasing the system’s budget, it seems unlikely that this area will be addressed. Service gaps appear likely to face the same future: while the advocacy community and providers join NAMI in labeling this as a need, no concrete plans are in place beyond those outlined by Erney.

Jordan recognizes the difficulty posed by NAMI’s calls. He says it’s not unrealistic to be hopeful that the organization’s recommendations will be adopted, but accepts that despite support from both parties on the issue of mental illness, the state faces challenges unrelated to mental illness, citing as an example the struggle for better school funding as a possible obstacle to the increased funding NAMI advocates.

For many, Grading the States is not a comprehensive evaluation of a state’s system but instead a call for more consumer services from an organization representing consumers.