In considering how to screen or assess for unobserved barriers, TANF agencies and their partners must consider the complex issues around privacy and confidentiality of information obtained through the identification process. A detailed assessment of these issues is beyond the scope of this report,79 but, because of the importance of the issue, we provide an overview of the legal underpinnings for privacy and confidentiality of information handling. Although issues related to confidentiality are complex, many states have found effective ways to address these requirements in order to meet clients' needs. Experts emphasize that concerns about or initial struggles with privacy and confidentiality requirements should not inhibit states and localities from providing services to address clients' needs.
As noted throughout this report, screening and assessment for unobserved barriers and the provision of services to address barriers requires that programs serving TANF recipients share individual data with welfare case managers (and sometimes vice versa) about clinical assessments, program participation, and client progress. Such data sharing raises complex issues around privacy and confidentiality. These issues include the fear of social stigma, inability to obtain health insurance, and physical harm or even death (in the case of sharing information about domestic violence situations).
For example, if the whereabouts of a woman who has suffered domestic violence were revealed to another program, it could inadvertently become known to the batterer and imperil her life. In some states, knowledge obtained by a child welfare agency that a parent is addicted to illicit drugs can be grounds for a finding of child neglect and removal of children from the home (in all states, welfare workers are mandatory reporters of suspected child abuse or neglect to the child welfare agency). In other instances, a client found to have learning disabilities, and provided appropriate accom-
modations in order to take a GED exam, might wish her disability to be kept confidential from prospective employers so as to avoid the inappropriate but all too common stigma of being perceived as "dumb." Yet, her welfare case manager might encourage her to reveal the learning disability to the employer in order to obtain accommodations in the work place.
Federal and state law and regulation abound on the protection of privacy, the confidentiality of records, and informed consent. At the federal level, generic laws include the Privacy Act of 1974, the Right to Financial Privacy Act of 1978, the Freedom of Information Act, the Data Matching and Privacy Protection Act of 1988, and their associated federal agency regulations. In addition, specific laws (and associated regulations) address confidentiality involving information about the disabilities or barriers covered in this report, including the:
Comprehensive Alcohol Abuse and Alcoholism Prevention, Treatment and Rehabilitation Act of 1970;
Drug Abuse Prevention, Treatment and Rehabilitation Act of 1972;
Americans with Disabilities Act (ADA) of 1990;
Individuals with Disabilities Education Act (last amended in 1997);
Health Insurance Portability and Accountability Act of 1996;80 and
Section 188 of the Workforce Investment Act (WIA) of 1998.
Moreover, States have enacted their own laws on these issues, some of which may go beyond federal law and regulation in restricting access to personal information. In some states, privacy protections are embedded in their constitution. This whole body of federal and state law and regulation are premised on serving several critical purposes. As stated by Brady, Powell, and Schink (1999):
"Confidentiality rules ensure that people's preferences are considered when deciding who will obtain their personal data. They also serve a pragmatic function, encouraging participation in activities that involve the collection of sensitive information.... Guarantees of confidentiality are also considered essential in encouraging participation in potentially stigmatizing programs, like mental health and substance abuse treatment services. Confidentiality laws are legislative responses to the pervasive stigma associated with many public programs and services."81
We would add that, in some cases, confidentiality laws are legislative responses to real financial, personal, or physical threats to safety.
Welfare case managers must be cognizant and well-trained about the conflict that arises between the need to share program and service information among partner agencies, and the need to maintain client privacy and confidentiality. Failure to maintain the proper balance can lead to real harm to clients. Failure to obtain written informed consent to disclose information can lead to lawsuits against the agency. Yet, failure to lawfully obtain vital information on a client's progress in program services can result in ineffective case management, inappropriate service planning, or inappropriate case closure. In order for case managers to be cognizant and well-trained, policy makers and other state officials must inform themselves of the laws, regulations, and issues, in order to pass on appropriate information and safeguards to case managers.
79 Much of the information from this section was taken from, and further detail can be found in, the U.S. Department of Health and Human Services, Center for Substance Abuse Treatment. Technical Assistance Publication Series (TAP) Series #24. Welfare Reform and Substance Abuse Treatment Confidentiality: General Guidance for Reconciling Need to Know and Privacy. Washington, DC: DHHS, 1999.
80 This law contains language specifically requiring the Secretary of HHS to develop and issue regulations governing the privacy and confidentiality of mental health patients' records. HHS issued proposed regulations for public comment in November, 1999; final regulations await incorporation of commenters' suggestions for revision.
81 Brady, Henry E. et al. Access and Confidentiality Issues with Administrative Data. UC DATA, Draft for discussion purposes only. Berkeley, CA: University of California, Berkeley, Data Archive and Technical Assistance, December 9, 1999.