NCVHS Subcommittee on Privacy and Confidentiality
Wednesday, November 19, 2003
Silver Spring Hilton Hotel
Silver Spring, MD
Good morning. My name is Laura Van Tosh and I am a mental health policy consultant specializing in public sector mental health and consumer issues. I appreciate the opportunity to present my perspective on the implementation of the HIPAA Privacy Rule.
I am pleased the Subcommittee is hosting this hearing and of your interest to gather information about the regulation and its impact on individuals. While implementation of HIPAA is still relatively new to providers and consumers it is important that you and others continue to closely examine barriers to compliance and best practices for implementation. These two activities alone will go a long way towards making HIPAA real for individuals with mental illness.
My testimony today will focus on the needs of people with mental illness, many of whom are unfamiliar with their rights in general let alone their new rights under HIPAA. For too long, people with mental illness have been perceived as incompetent and incapable of participating in the process to determine their own treatment, and unfortunately they are often shuffled from program to program to have basic needs met such as access to housing, employment, and healthcare. Stigma within and outside of the mental health system has perpetuated these misconceptions, keeping consumers shrouded in compliant and passive roles. I suppose this phenomenon is still common since so many consumers are forced to use bundled services where for example, access to housing is contingent upon the receipt of clinical services.
In Montgomery County, Maryland, where I live and work, people with mental illness are just beginning to recognize that recovery can be within their reach. Hopefully and in the not too distant future, providers of mental health services will also see that recovery is possible as well. A few blocks from where we are today is one mental health program where the glimmer of empowerment is starting to shine through the eyes of people with severe mental illness. Recently, I facilitated a forum at this program to gather input from consumers about the design of a proposed consumer-operated program where peers will support peers to access housing, jobs, and social supports. I was impressed with the energy and flow of ideas coming from the consumer participants. Many of the consumers indicated to me that they had never been asked what they thought about programs and services provided by the County. I suspect the same would be true for the implementation of HIPAA. Most consumers I have spoken with were unable to identify their rights under HIPAA but they did recall signing new forms in order to obtain mental health services. Consumers reported that in order to be seen by a therapist or doctor that they would have to sign the forms and none were given much of an explanation. Most of these consumers did not know they could examine or amend their health records, for example, and how doing so could enhance their empowerment and improve their mental health outcomes.
People with mental illness, no matter the extent of disability, have an opportunity to become empowered by using HIPAA to increase their own knowledge of mental health services and thereby improve individual mental health outcomes. This is why I became so interested in the regulations as they were being developed. If I could look at my health record, I could participate in determining my own care. This is so basic and intrinsic to my own recovery process.
I am very pleased the federal Center for Mental Health Services at SAMHSA has identified HIPAA consumer education activities and has embarked on a modest educational program to inform consumers of their rights and responsibilities under HIPAA. CMHS has developed a unique education card titled, “Privacy Rights for Mental Health Consumers.” The education card succinctly summarizes key aspects of HIPAA in lay terms. The CMHS consumer education card has clear and relevant information for people with mental illness and is designed to accommodate persons with basic reading skills. From what I understand, the education card is still under review at SAMHSA and may be released early next year. This will be a valuable resource to all mental health consumers and hopefully, the card will be distributed to waiting rooms and public sector mental health programs soon. Moreover, the education card is a template of sorts for in-person consumer training perhaps provided by statewide consumer organizations that are located throughout the United States.
Recently, CMHS staff and I joined forces to design an interactive training module to guide mental health consumers through key aspects of the HIPAA Privacy Rule. We are planning a statewide training in January 2004 for consumer members of On Our Own of Maryland, a large consumer organization based in Baltimore. One-time training programs are useful and encourage consumers to be better informed about HIPAA as well as the benefits of consumer/patient involvement. However, a larger investment is needed to ensure that consumers who are new to the mental health system are in fact educated early about their rights. In my estimation, providers of mental health services are concerned with practical HIPAA issues such as communication challenges between other social services and mental health agencies. While these impediments are understandable, we must be certain that the beneficiaries of the Rule are informed as well.
I know of no other training effort that targets people with mental illness, than the education card produced at CMHS. Clearly, more education and monitoring of consumer needs for information is necessary if we are to realize the potential for HIPAA as a tool to improve mental health outcomes for persons with mental illness. Successful implementation of HIPAA must be measured to the extent that consumers are informed and empowered.
Thank you.
Laura Van Tosh
Van Tosh Consulting
1533 West Falkland Lane, #336
Silver Spring, MD 20910
(301) 585-9455
Lauravt@aol.com