Missing Adults: Background, Federal Programs, and Issues for Congress
Released: 2017-11-30T00:00:00

Introduction

Adults may go missing due to personal choice; an abduction or foul play; a physical or developmental disability; natural catastrophes that displace individuals, such as a hurricane; or certain high-risk behaviors, including gang involvement or drug use, among other circumstances.

State and local laws govern how criminal justice entities respond to missing adult cases. This response is complicated by a number of factors. Unlike children, adults have the legal right to go missing in most cases and may do so to seek protection from a domestic abuser and other related reasons. Further, law enforcement agencies may be hesitant to devote resources to missing adult cases, given competing priorities. Law enforcement agencies within and across states also respond differently to missing adult cases. Some states require at least a 24-hour waiting period after the person is believed to be missing before a police report may be filed, while others take reports without a waiting period.

The federal government has played a role in both (1) seeking to prevent certain types of missing adult incidents and (2) recovering adults who go missing, including those who are deceased and for whom only remains provide clues to their identity and circumstances surrounding their disappearance. Congress authorized the Missing Alzheimer's Disease Patient Alert program under the Violent Crime Control and Law Enforcement Act of 1994 ( P.L. 103-322 ) to assist in locating missing individuals with Alzheimer's disease and other forms of dementia through a patient identification program, as well as outreach and education efforts. This program was funded through FY2015. In 2000, Congress authorized the Department of Justice (DOJ), through Kristen's Act ( P.L. 106-468 ), to make grants to establish a national clearinghouse for missing adults and provide technical assistance to law enforcement agencies in locating missing adults. This grant was funded from FY2002 through FY2006. The federal government has also supported efforts to establish databases to track and identify missing adults, their relatives, and unidentified human remains.

The first section of this report discusses demographics and record keeping of missing adults and unidentified remains, as well as some of the factors that may contribute to the disappearance of adults. This section also discusses federally funded databases that are used to track data on missing adults and unidentified individuals. The second section of the report describes the federal programs and initiatives to assist in locating missing adults, including funding data where applicable. Finally, the third section discusses issues about the federal role in missing adult cases.

Why Do Adults Go Missing?

Certain circumstances can make adults vulnerable to going missing. Adults may go missing because of an abduction or foul play. A physical or developmental disability or cognitive disorder, such as Alzheimer's disease and other forms of dementia, may also contribute to a missing episode. Adults with dementia have been identified as high-risk for going missing by advocates for older adults. According to the Alzheimer's Association, a nonprofit organization that provides research on Alzheimer's disease, 5.5 million people in the United States suffer from Alzheimer's disease and related dementia, and about 60% of those will wander away from their homes or health care facilities. Further, a natural catastrophe can displace individuals and make their whereabouts unknown to others. Finally, other adults vulnerable to missing incidents may include those with high-risk lifestyles, such as individuals who abuse drugs or are gang involved, and those that have a history of victimization, including domestic violence.

Data on Missing Adults and Unidentified Remains

There is no definitive estimate of the number of adults who go missing, because some adults are not known to be missing or are not reported to databases that compile data on missing persons. However, three federally supported data sources provide some insight into this number: the Missing Person File at the FBI's National Crime Information Center (NCIC); the FBI's National DNA Index System (NDIS), which stores information on offenders and arrestees, forensic evidence, as well as individuals believed to be missing, their relatives, and unidentified human remains; and the National Missing and Unidentified Persons System (NamUs), administered by DOJ's National Institute of Justice (NIJ). Profiles of missing individuals entered into one database do not necessarily populate other databases, although some missing individuals may be reported to more than one of the databases. Therefore, numbers of missing persons should not be added across any of the databases.

The NCIC Unidentified Person File, NamUs, and NDIS contain information about unidentified decedents, or remains. However, the true number of unidentified missing adult cases is unknown because remains can go undiscovered, or if they are recovered, they may not be reported to the databases or retained. In a census conducted by DOJ in 2004, medical examiners and coroners reported a total of 13,486 unidentified human remains on record, though about 51% of medical examiner and coroners' offices lacked policies for retaining records such as x-rays, DNA, or fingerprints that could identify missing individuals. (The report also found that 90% of offices serving large jurisdictions did retain such records.) Further, medical examiners and coroners estimated that about 4,400 unidentified human decedents were reported in an average year, with approximately 1,000 (23.0%) remaining unidentified after one year. Another DOJ study estimated, using death records reported to the Centers for Disease Control and Prevention from 1980 through 2004, that as many as 10,300 of these records were for unidentified decedents. This number is an approximation, as states do not uniformly specify on the death certificate when a person's identity is not known. In addition, the criteria used by DOJ to search the death records may have included individuals whose identities were known, as well as unidentified individuals who were later identified.

The discussion in the next section will show that the databases range in the number of profiles they contain, as well as the type of information they collect, such as basic demographic profiles, DNA profiles, etc. ( Note that only the data on missing persons and unidentified decedents, as reported in NCIC, are regularly updated in this report .)

National Crime Information Center Missing Person and Unidentified Person Files

The NCIC within the FBI's Criminal Justice Information Services (CJIS) Division maintains statistics on missing adults and unidentified decedents. The NCIC is a computerized index of documented information concerning crimes and criminals of nationwide interest and a locator file for missing and unidentified persons. Since October 1, 1975, the NCIC has maintained records of missing persons (known as the Missing Person File) who are reported to the FBI by federal, state, and local law enforcement agencies; foreign criminal justice agencies; and authorized courts. The Missing Person File was created in response to a request in 1974 from the NCIC Advisory Policy Board (APB). The APB is composed of local, state, and federal criminal justice and national security agencies, and it advises the FBI on criminal justice information matters. The Missing Person File includes records for individuals who are missing because they

have a proven physical or mental disability, are missing under circumstances indicating that they may be in physical danger, are missing under circumstances indicating their disappearance may not have been voluntary, are under the age of 21 and do not meet the above criteria, are missing after a catastrophe, or are 21 and older and do not meet any of the above criteria but for whom there is a reasonable concern for their safety.

These categories are presented in further detail in Table A-1 . Pursuant to the National Child Search Assistance Act of 1990 (Title XXXVII of the Crime Control Act of 1990, P.L. 101-647 ), records of missing children under age 18 must be immediately entered into the Missing Person File. The act also requires the Attorney General to publish an annual statistical summary of the Missing Person File. Suzanne's Law, enacted by the Prosecutorial Remedies and Other Tools to End the Exploitation of Children Today Act of 2003 (PROTECT Act, P.L. 108-21 ), requires law enforcement to also immediately submit information about missing adults to the NCIC ages 18 through 20. Law enforcement agencies are not mandated under federal law to submit missing person records of adults over the age of 21 into the Missing Person File. Although records of missing adults are captured, the NCIC does not include the complete number of adults who go missing and are not reported to the database.

NCIC Missing Person Data9

As of December 31, 2016, there were 88,040 individual records (entered in 2016 and previous years) remaining in the Missing Person File. Of these, 54,334 (61.7%) were for missing adults ages 18 and older and 33,052 (38.3%) were for children ages 17 and younger.

In calendar year 2016, over 647,000 (647,435) individuals of all ages were reported missing to the NCIC. Of all individuals reported missing in 2016, a total of 181,759 (28.1%) were ages 18 and older. Also in 2016, nearly 585,000 missing person records were cleared or canceled; some of these records were entered prior to 2016. Table A-1 summarizes the number of missing cases entered in 2012 through 2016 for individuals ages 18 and older under the six missing person categories listed previously. The highest number of missing adults went missing for an unspecified reason, but there was a reasonable concern for their safety.

Of all adults age 18 and older who were reported missing in 2016, most were male (59.1%). The majority of missing adults were white (66.0%), followed by individuals who were black (26.6%), of an unknown race (3.0%), Asian (3.1%), and American Indian or Alaskan Native (1.3%). Relative to their share of the population generally, missing white and Asian adults appear to be underrepresented and missing African American adults appear to be overrepresented. The NCIC does not report on the Hispanic origin of missing individuals, and NCIC users are instructed to enter records for Hispanic individuals using the race code (American Indian or Alaskan Native, Asian or Pacific Islander, black, or white) that most closely represents that individual as perceived by the law enforcement official.

NCIC Unidentified Missing Persons Data13

Some individuals who go missing may be deceased, and their remains, intact or not, may be the only available clues concerning their identity and circumstances surrounding their disappearance. Since 1983, the NCIC has taken reports of unidentified missing persons, pursuant to the passage of the Missing Children Act of 1982 ( P.L. 97-292 ). The act required the FBI to "acquire, collect, classify, and preserve any information which would assist in the identification of any deceased individual who has not been identified after the discovery of such deceased individual." Pursuant to this requirement, the NCIC's Unidentified Remains File was established to take reports of unidentified deceased persons, persons of any age who are living and unable to determine their identity, and unidentified catastrophe victims. Reports may include information about bodies found shortly after death, when a person's remains may be fairly intact, as well as skeletal remains. For those individuals who are living and their identities are unknown, information entered about their appearances could help in reuniting them with relatives.

The total number of unidentified persons in the NCIC may represent just a fraction of the true number of missing remains. As of December 31, 2016, the Unidentified Remains File included 8,431 unidentified persons. During 2015, nearly 900 unidentified person records were entered into NCIC. Of those, about 80% were for deceased unidentified bodies; less than 1% was for unidentified victims of catastrophes; and approximately 19% were for living persons who could not be identified because they could not identify themselves (e.g., an individual with amnesia, infant).

National DNA Index System16

Another database operated by the FBI stores DNA records, including for missing adults and unidentified remains, and was authorized under the DNA Identification Act of 1994 as part the Violent Crime Control and Law Enforcement Act of 1994 ( P.L. 103-322 ). This database is known as NDIS. P.L. 103-322 specified that the FBI could establish an index of DNA identification records of persons convicted of crimes, analyses of DNA samples recovered from crime scenes, and analyses from unidentified human remains. A fourth category of records for relatives of missing persons was added in 1999 by the Consolidated Appropriations Act of 2000 ( P.L. 106-113 ). DNA laboratories may enter DNA information into NDIS that involves one of the four categories of records, as well as the records of missing adults. The data are first entered by authorized users into the Local DNA Index System (LDIS), which can then populate the central laboratory for each state, known as a State DNA Index System (SDIS). Only SDIS laboratories may upload DNA profiles directly to the NDIS. LDIS or SDIS laboratories can conduct searches of their own databases prior to uploading the data to NDIS. Searches of data entered by other states into NDIS are conducted by the FBI Laboratory, which automatically searches new DNA data when profiles are submitted by the states.

NDIS contains approximately 15 million profiles in the five databases: offenders and arrestees database, forensic evidence database, missing unidentified human remains database, missing person database, and biological relatives of missing persons database. Most of the DNA profiles are those stored in the criminal and forensic evidence databases. The three missing person databases are part of the FBI Laboratory's National Missing Person DNA Database (NMPDD) program, which works to identify missing and unidentified persons based on available DNA profiles and other clues. The unidentified human remains database contains DNA profiles from the remains of individuals that cannot be identified by fingerprint; dental, medical, or anthropological examinations; and of individuals who are living, but are unidentifiable using typical investigative methods (e.g., children and others who cannot or refuse to identify themselves). The relatives of missing persons database contains DNA profiles that are voluntarily submitted by the relatives of known missing individuals. Finally, the missing person database contains DNA records of missing persons obtained from their belongings or derived from the profiles of their relatives.

The three missing person databases can be searched against one another. The Combined DNA Index System (CODIS) is the software in NDIS that compares various DNA profiles, and if a match is made between two sets of DNA profiles, the software sends an electronic message to the laboratories that contributed the samples. DNA analysts at the laboratories review the data to confirm the match. The laboratories are responsible for alerting the investigating law enforcement agency, medical examiner, coroner, or medical-legal authority of the results. The FBI is continuing to develop technology, including software to conduct kinship DNA analyses, and is using metadata (e.g., sex, date of last sighting, and age) that is intended to assist in locating missing persons.

The National Missing and Unidentified Persons System (NamUs)21

The National Missing and Unidentified Persons System (NamUs) is an online repository for information about missing persons and unidentified remains that is overseen by DOJ's National Institute of Justice (NIJ). According to DOJ, NamUs was established in response to an overwhelming need for a central reporting system for unidentified human remains cases. In 2005, DOJ's National Institute of Justice convened stakeholders—medical examiners, coroners, law enforcement personnel, managers of state missing children clearinghouses, family members of missing persons, forensic scientists, and policymakers—for a national strategy meeting called the "Identifying the Missing Summit." The summit focused on the challenges in investigating and solving missing person cases. After the summit, work began on the development of the online repository. To further work on the feasibility of a database, DOJ appointed an expert panel of medical examiners and coroners, which ultimately confirmed the need for a central reporting system for unidentified human remains. These efforts also led DOJ to establish and fund NamUs. NamUs is composed of three databases: missing persons, unidentified remains, and unclaimed remains. The system has been accessible via the web since 2009 , and is operated through an NIJ grant to the University of North Texas (UNT) Health Center . NamUs users, including members of the public, can search across databases in an effort to identify unidentified human remains and solve missing person cases. Funding has been provided at $2.4 million in FY2016 ( P.L. 114-113 ) and FY2017 ( P.L. 115-31 ) for the "operationalization, maintenance, and expansion" of the system. NIJ has provided funding in previous years through appropriations for "DNA and other forensics."

The missing person database serves as a repository for information on missing persons that can be entered by law enforcement agencies or members of the public. Profiles of missing individuals may include photographs and information about the circumstances around their disappearance, their dental records, DNA, physical appearance, and police contact information, among other items. Users of the website may search the database based on these attributes. The database also includes information about state statutes on recovering missing persons as well as links to state missing person clearinghouses, which are maintained by state law enforcement agencies or advocacy organizations and provide information about missing adults.

The unidentified remains database is available for medical examiners and coroners to upload their cases. Website users may view profiles of the unidentified remains; however, only law enforcement agencies and other authorized entities may enter information and review additional information and photographs that are not available to the public. Some of the profiles cover remains that are fully intact, whereas others include pieces of the missing person's body or information about the remains and where they were found. Website users can also search based on characteristics such as demographics, anthropologic analysis, the NCIC record number, dental information, and distinct body features.

The unclaimed remains database is available for medical examiners and coroners to upload profiles of deceased individuals who have been identified by name, but for whom no family members have been identified or located to claim the body. NamUs automatically performs comparisons of the various databases to determine matches or similarities between profiles of missing persons, unidentified persons, or unclaimed remains.

Comparison and Interaction of Databases

Records of missing persons or unidentified remains are submitted to most of the databases by authorized law enforcement agencies, state missing persons clearinghouses, medical examiners and coroners, or DNA laboratories. All of the databases can be accessed only by the federal government or authorized law enforcement and other personnel; however, records in NamUs and the NCMA database can also be reviewed by the public, though sometimes only on a limited basis for NamUs. Table A-2 summarizes some of the features of the databases as well as others that store records of missing persons and unidentified remains.

Federal Role in Recovering Missing Adults

In recent years, the federal government has played a role both in preventing certain types of missing adult incidents and in working to recover adults who go missing, including those who are deceased and for whom only remains provide clues to the circumstances surrounding their disappearance. In addition to funding or operating databases that track information about missing adults and unidentified remains, the federal government has undertaken other related efforts, including some that are no longer funded. These efforts are (1) the DNA Initiative, created under President George W. Bush, which focused on identifying the remains of unidentified deceased individuals; (2) National Missing Persons Task Force, with its emphasis on achieving greater cooperation among the various federal databases; (3) the Missing Alzheimer's Disease Patient Alert program to prevent missing episodes and locate missing individuals with Alzheimer's disease and related dementia; (4) activities funded under Kristen's Act to locate missing adults; and (5) the National Center for Missing and Exploited Children (NCMEC), which works to recover missing children and adults ages 18 to 21 who are reported to the agency as missing by law enforcement officials. The Missing Alzheimer's Disease Patient Alert program and activities funded under Kristen's Act have specifically received congressional appropriations for missing adult activities. The other activities have been funded under appropriations for initiatives or programs that encompass activities other than just those for missing adults.

DNA-Related Activities

In March 2003, President George W. Bush announced a new DNA Initiative to promote the use of forensic DNA technology to solve crimes, protect individuals from wrongful prosecution, and identify missing persons. Funding was provided under the initiative from FY2004 through FY2008. Within the past several years, Congress has appropriated funding to DOJ to carry out the following activities to assist with locating missing adults and unidentified remains:

sample analysis of unidentified human remains and family reference samples; standardized sample DNA collection kits for unidentified remains of missing persons; evaluation and implementation of advanced DNA technologies to facilitate the analysis of skeletal remains; focus group on using DNA technology to assist the identification of human remains; training and technical assistance on using DNA to identify missing persons and unidentified remains; census of medical examiners and coroners and inventory of unidentified remains; and NamUs databases.

National Missing Person's Taskforce28

As part of the DNA Initiative, in 2005, NIJ and FBI were directed by DOJ leadership to establish a national task force to assess how to better encourage, facilitate, and achieve greater use of federal missing person databases to solve missing persons cases and identify human remains. In response to this directive, NIJ and the FBI convened the National Missing Persons Taskforce, composed of a broad cross-section of criminal justice officials, forensic science experts, and victim advocates. The task force met July 2005 through January 2006 to address, among other issues, the federal databases that store information on missing persons and unidentified human remains. According to DOJ, members of the task force convened these meetings to better understand and improve the information sharing tools and DNA technologies available to solve cases involving missing persons and unidentified decedents. The task force also created model state legislation to encourage states to adopt laws that improve the ability of law enforcement to locate and return missing persons, identify human remains, and provide timely information to family members of missing persons.

Missing Alzheimer's Disease Patient Alert Program29

The Violent Crime Control and Law Enforcement Act of 1994 ( P.L. 103-322 ) authorized the Missing Alzheimer's Disease Patient Alert program to provide grants to locally based organizations to protect and locate missing individuals with Alzheimer's disease and related dementia. Such individuals may be unable to think clearly; to recognize persons and landmarks; or to react rationally under normal circumstances. Those with Alzheimer's disease and dementia tend to hide or seclude themselves when they are in unfamiliar and disorienting situations. About 60% of missing persons with Alzheimer's disease and dementia who were found were located within the first 6 hours of going missing and about 30% within 6 to 12 hours.

Funding was authorized for the program at $900,000 for each of FY1996, FY1997, and FY1998. Congress appropriated funding for the program from FY1996 through FY2015. Annual funding ranged from $750,000 to $2.0 million. Funding was not appropriated in FY2016 and FY2017.

The program is administered by DOJ's Bureau of Justice Assistance (BJA) within the Office of Justice Programs. Funding under the program has been awarded to a variety of entities, including the International Association of Chiefs of Police (IACP), Alzheimer's Association, MedicAlert Foundation Project Lifesaver, and universities. For example, IACP has used these funds to develop its Alzheimer's Initiative program. The program seeks to increase awareness among law enforcement agencies and the public in addressing the needs of missing persons with Alzheimer's disease. Their website provides a clearinghouse of information and resources for those who may come across missing persons, including a guide to state alert systems for missing seniors and adults. In addition, IACP provides training for public safety administrators, law enforcement officers, and others from the first responder community with training on Alzheimer's and dementia.

BJA awarded funds through the Missing Alzheimer's Disease Patient Alert program to the Alzheimer's Association from FY1996 through 2015. These funds were used to establish and carry out the MedicAlert® + Alzheimer's Association Safe Return Program. The program is a nationwide emergency response service for individuals with Alzheimer's or a related dementia who wander or have a medical emergency. Enrollees receive a bracelet indicating that the individual is memory impaired and including a toll-free, 24-hour emergency response number to call if the person is found wandering or has a medical emergency.

Kristen's Act

In 2000, Congress passed Kristen's Act ( P.L. 106-468 ), named after Kristen Modafferi, who has been missing since 1997. Kristen was 18 when she disappeared and her family was unable to access services through the National Center for Missing and Exploited Children (NCMEC) because, at the time, the organization only provided assistance to missing incident cases for children under age 18. NCMEC now provides services for missing young adults ages 18 to 21, pursuant to Suzanne's Law, which requires law enforcement to also immediately submit information about missing adults ages 18 through 20 to the NCIC. Kristen's Act authorized $1 million in funding for each of FY2001 to FY2004 and permitted the Attorney General to make grants to assist law enforcement agencies in locating missing adults; maintain a database for tracking adults believed by law enforcement to be endangered due to age, diminished mental capacity, and possible foul play; maintain statistical information on missing adults; provide resources and referrals to the families of missing adults; and establish and maintain a national clearinghouse for missing adults.

Kristen's Act grants were made from FY2002 through FY2006 through the Edward Byrne Discretionary Grant Program to the National Center for Missing Adults (NCMA), though funding authorization expired at the end of FY2004. Funding levels ranged from $150,000 to $1.7 million. NCMA began in 1995 as the missing adult division of the Nation's Missing Children Organization. NCMA received funding under Kristen's Act to expand its efforts to recover missing adults beginning in FY2002 and received this funding through FY2006. The organization merged with Let's Bring Them Home, a nonprofit organization that provides education and resources on missing persons.

National Center for Missing and Exploited Children

The National Center for Missing and Exploited Children is a primary component of the federally funded Missing and Exploited Children's Program. Although NCMEC's mission is to recover missing children under age 18, it also provides services for missing young adults ages 18 through 20, pursuant to Suzanne's Law, which requires law enforcement to also immediately submit information about missing adults to the NCIC ages 18 through 20. This law changed the upper age limit of individuals who must be entered into the NCIC.

NCMEC processes young adult cases differently than cases for missing children. NCMEC will accept a young adult case only if it is reported by a law enforcement entity—and not by parents, spouses, partners, or others—because the organization relies on law enforcement personnel to verify that the young adult is missing due to foul play or other reasons that would cause concern about the individual's whereabouts, such as diminished mental capacity. NCMEC then assists in recovery efforts for these adults as it would for children under age 18. A case manager in the Missing Children's Division is assigned to serve as the single point of contact for the searching family and to provide technical assistance to locate abductors and recover missing children and young adults.

Issues

Federal and state policymakers and other stakeholders have increasingly focused on three issues related to adults who go missing: (1) coordinating databases on missing persons; and (2) assisting states with building the capacity to develop both alert systems to inform the public about missing older adults and technology to recover these individuals.

Coordination of Federally Funded Databases on Missing Persons and Unidentified Decedents

The first section of this report discussed the various federally funded databases that store information on missing persons and unidentified decedents. These databases do not currently populate one another, although some of the databases indicate whether information about a particular individual is available in another database. This limitation raises the question about whether the federal government can and should develop technology to enable the databases to coordinate, although concerns about privacy and funding would likely need to be addressed.

Alert Systems

Silver or Senior Alerts35

Alert systems, known as Silver or Senior Alerts, have been established in multiple states. These alert systems were created out of concern for the safety of seniors and other at-risk adult populations who are prone to wandering due to a physical or cognitive disability or medical condition such as Alzheimer's or other forms of dementia. Some missing adult alert programs are modeled after the states' AMBER Alert system for abducted children.

Issuing alerts to law enforcement agencies and the public for missing vulnerable adults in some the states appears to be at the discretion of the law enforcement agency—local or state or both—and is not required of the agency. In addition, state alert systems vary in terms of the target population for issuing an alert (i.e., older adults with dementia versus any adult with a disability). Most law enforcement agencies have the ability to disseminate the alert to law enforcement agencies and media in the local area, region, statewide, and other states. For example, the Texas Division of Emergency Management disseminates information within the alert advisory area to local, state, and federal law enforcement agencies; primary media outlets; the Texas Department of Transportation; the Texas Lottery Commission; and the Independent Bankers Association of Texas.

Some stakeholders have raised concerns that alert systems may not be useful for some adults who go missing. For example, the media repeatedly reporting missing adult cases could desensitize the public to the issue of wandering. In addition, missing persons may not be found in a place that is well-trafficked. Among missing persons with Alzheimer's Disease, about three-quarters leave on foot; and of those found alive, about half are found 1 to 5 miles from where they originated. For these reasons, policymakers may wish to consider Silver Alerts in combination with a combination of other policy approaches.

Further, some stakeholders have raised concerns that broadcasting information about missing adults can infringe on their rights to privacy. Unlike incidents involving the AMBER Alert program, which was established to alert law enforcement and the public when a child is missing and criminal activity may be involved, it is not a crime for an adult to wander from home or purposely go missing. The stakeholders assert that states should have criteria for activating an alert that limits disclosure of information to the public only when it is absolutely necessary to preserve the missing person's life. They also assert that disclosure of this information should be reserved to the most limited geographic area possible. Further, concerns have been raised that having only selected criteria for the alert may be short-sighted. For example, some have argued that making age the primary factor for issuing an alert overlooks the possibility that age alone does not necessarily signal whether a person is endangered. Another consideration is the extent to which information about a missing person's health background can be broadcast to the public. The Health Insurance Portability and Accountability Act (HIPAA) Health Privacy Rule—the federal rule that regulates the use or disclosure of protected health information—limits disclosure of health information by health care providers.

In 2011, DOJ published a guide to assist states and communities in developing or enhancing what DOJ calls an Endangered Missing Advisory (EMA), or an advisory for individuals who do not meet the AMBER Alert criteria established by DOJ. The guide suggests that EMAs can be issued for missing adults, or for children while law enforcement determines whether a case meets the AMBER Alert criteria. The guide outlines the steps states and communities can take in developing an EMA plan, including creating a task force—comprised of key AMBER Alert stakeholders, broadcasters and other representatives from the media, and law enforcement, among others—that can establish criteria and procedures for the EMA and oversee its operation and effectiveness. The guide suggests that adults may benefit from a different type of alert system than AMBER Alert, and that task forces should determine which elements of the AMBER Alert plan should be used to activate an EMA.

Still, some states with alert systems could have difficulty coordinating with another state that lacks a similar system. States could also have challenges coordinating with states that have alert systems with different criteria for activating an alert. Although state and local governments have taken the lead in implementing alert systems, the federal government could play a role in coordinating efforts when a missing individual is believed to have crossed state lines as well as assist in the development of formal agreements or protocols for the use of interstate alerts. The federal government could model any policies to coordinate across state lines on the AMBER Alert program, which provides training and technical assistance to states on a number of issues related to abducted children. This training addresses how jurisdictions, including those in different states, can work together to recover children who are abducted, among other topics. Through conference and training exercises, state AMBER Alert coordinators, state and local law enforcement agencies, and other stakeholders have opportunities to meet and exchange ideas, which may further facilitate coordination.

Tracking Technology

Electronic monitoring services for individuals who are susceptible to going missing are being implemented. One such electronic monitoring program is used by some state and local law enforcement agencies with technology developed by Project Lifesaver International, a nonprofit organization that administers the Project Lifesaver program and has received funding under the Missing Alzheimer's Disease Patient Alert program. Project Lifesaver uses a personalized wristband that emits a signal to track individuals prone to going missing. The wristband is worn by the clients continuously, and each month, a law enforcement officer or trained volunteer visits with the clients to replace the wristband batteries and provide referrals to clients and their caregivers in need of social services. When family members or caregivers report to the designated Project Lifesaver agency—typically a local law enforcement or first responder agency—that the client is missing, a search and rescue team responds to the wanderer's area to search using a mobile locator tracking system.

Project Lifesaver grew out of local law enforcement experience with search and rescue efforts for missing persons with Alzheimer's and other forms of dementia. The target population of the program has expanded to include children with special needs such as autism and Down's syndrome and to anyone else that may be at risk of wandering for a medical reason.

In addition to providing the technology, the program trains the designated agency to communicate with persons with Alzheimer's disease and other disorders. Project Lifesaver International reports that the tracking technology is used by hundreds of law enforcement agencies in nearly all states and the District of Columbia. According to Project Lifesaver International, the benefits from the program include saving law enforcement and search and rescue response time and resources in locating missing persons due to wandering.

The Alzheimer's Association also has a program, known as Comfort Zone, that uses tracking technology. The program is a web application that includes a location-based mapping service. The enrolled individual carries a tracking device with global positioning system (GPS) technology. Caretakers can track the individual's whereabouts via a secure online website through the Alzheimer's Association. The website includes a map with addresses of the vicinity in which the person is located. Caretakers can also receive alerts and notifications of the individual's whereabouts, such as when the individual leaves a specified radius (e.g., beyond their house or some other location).

Tracking technology raises questions about the rights to privacy and autonomy of individuals who are enrolled. These organizations appear to have taken steps to ensure that enrolled participants meet the eligibility criteria and to secure the consent of the enrolled individual, where possible. For individuals who participate in Project Lifesaver, consent usually comes from a caregiver having legal responsibility for the individual. In rare cases, the individual gives consent. Individuals enrolled in Comfort Zone give consent to be enrolled, and in some cases the caregiver with legal responsibility gives consent. According to the Alzheimer's Association, the program is ideally for individuals with early stages of dementia.

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