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Consumers & Families Test State Mental Health Agency Systems

March 2006

A unique and innovative component of Grading the States: A Report on America’s Health Care System for Serious Mental Illness is the “Consumer and Family Test Drive” (CFTD). NAMI wanted to evaluate each state’s mental health agency in real world situations because access to services depends on access to information. We therefore had consumers and family members navigate the Web site and telephone system of the state mental health agency in each state and rate their accessibility according to how easily one could obtain basic information.

This exercise was like a “pop quiz.” One that America failed. Over 80 percent of the states scored less than 50 percent of the total points.

In one case, an agency employee told a consumer: “No, I will not help you.”

States that received excellent Test Drive scores were Indiana, Michigan, Ohio, South Carolina, and Tennessee. And those that received the lowest Test Drive scores were Alabama, Arkansas, Missouri, New Mexico, and South Dakota.

Overall, the results point to major lags in the communication of important service and treatment information. Given the overall fragmentation of mental health systems, this is not surprising, but is not acceptable.

Clear trends emerged across states and across communication media:

Inadequate phone and Web site accessibility

Over 80 percent of states did not score even half of the total possible points on the survey, indicating that the vast majority of state mental health authorities do not adequately communicate basic information to their customers. Both consumers and family members felt frustrated and discouraged at the difficulty in accessing information, feelings that are potential roadblocks to empowering consumers and families to play an active role in their treatment. 

Great emphasis should be placed on enhancing state information service systems. Making contact with public health service systems easy and informative for consumers and family members will add to the likelihood of better treatment outcomes.

Information systems lack cultural competency

As indicated above, accessibility to information on mental health is inadequate for the majority population, but it is even worse for diverse, underserved populations. In the CFTD, raters assessed the ease of access to information on mental illnesses and their treatment in a non-English language, using a broad definition of “non-English speaker” that included those who are deaf and hard of hearing, as well as those who are blind.

The mean for this item, including both phone and Web site surveys, was the lowest of any item (1.19 points out of four possible points). Such a low score indicates that information in a non-English language was found only with great difficulty. Some states did better than others on this item, specifically New York, California, Arizona, and Maryland, although no state earned a perfect score. Disappointingly, some states with large multicultural populations scored well below the mean, including Virginia, New Mexico, and Florida.

It is well documented that individuals of multicultural backgrounds already face myriad barriers in accessing services, and the experience of this survey just confirms that sad reality.

Phone services are superior to Web sites

The mean scores for phone service were significantly greater than the scores for Web service. In a rapidly changing world of information technology, more and more consumers and family members will rely on the Web, but our survey results confirm that states have been slow to adapt. State mental health authorities need to take advantage of the new technology and put more resources into their Web-based systems. And, in this time of limited staff resources, enhanced information on Web sites can help to relieve the burden on phone personnel within state mental health authorities in answering frequently asked questions.

Additionally, states should be mindful of using technologies that the general public have available to them, rather than esoteric or sophisticated technologies. As an example, some raters were frustrated by the large quantity of Web site documents that could only be accessed as PDF files. Their computers did not have the required technology to open these documents.

Inconsistency of responses from phone service personnel

Inconsistency within state phone services was an issue in general for consumers and family members. For example, in over half the states, phone personnel within the state mental health authority requested a zip code, mailing address, and/or county before providing information and referral services. However, within those same states, other raters had a different experience when requesting information and were not asked to provide zip code, mailing address, and/or county, indicating that phone personnel within states may not be dealing with calls in a consistent way. Another example of intra-state inconsistency is captured by this common situation: Two raters left voice mails for the same staff person, and only one of those raters received a call back.

Communication between phone carriers and state mental health authorities needs improvement

Raters complained numerous times that phone carriers (e.g., Information, 411) gave them the wrong numbers for state mental health authorities, even when raters gave these phone carriers the name of the city in which the state mental health authority was based. Oftentimes, raters called these phone carriers a few times, yet multiple phone calls did not always yield the correct phone number. State mental health authorities should ensure that phone carriers have updated contact information.

Consumers and family members were recruited from NAMI New Hampshire’s network of volunteers and leadership. All those recruited were currently receiving services, or have received services from the New Hampshire community mental health system. In the end, six consumers and five family members were recruited to be raters. All family members were asked to survey 20 states each. Four consumers were asked to survey 20 states each, and two were asked to survey 10 each. Raters received a stipend when their completed surveys were received, and they were also reimbursed for postage and phone bills.

To view each state’s results for the CFTD survey, visit the Grading the States Web site.