Residential treatment facilities that provide substance use disorder (“SUD”) or other sensitive health services, such as mental health, behavioral health or developmental disability diagnosis and treatment, are again faced with a dilemma this year: do they provide patient information to the U.S. Census Bureau (the “Bureau”) enumerators to comply with the 2020 Census group quarters requirements and potentially violate federal and state patient confidentiality laws, or do they refuse to provide such information and risk being penalized for failure to comply with the Census? Luckily, the Substance Abuse and Mental Health Services Administration (“SAMHSA”) who enforces the SUD confidentiality provisions at 42 C.F.R. Part 2, offered guidance during the 2010 Census that provided two alternatives for how residential treatment facilities could provide Bureau enumerators with necessary information without running afoul of the stringent SUD confidentiality provisions. These alternatives would likely also be sufficient under many state laws that protect the confidentiality and identity of patients receiving sensitive services, such as mental health, behavioral health or developmental disability services.
Background
The Bureau conducts a national Census every ten years to determine, among other things, the allocation of about $675 billion in federal and state funding. In order to ensure accuracy of its population counts, the Bureau attempts to identify special populations that are not easily captured by its traditional mailed survey and utilize other processes to count such populations. One such special population is individuals living in group-living quarters, such as hospitals, skilled nursing facilities, jails or correctional institutions, and residential treatment facilities. To ensure these populations are properly counted, the Bureau relies on obtaining certain information from the facilities, which oftentimes, in the case of health care facilities, may include identifiable patient information.
The Bureau’s methods of enumeration for group quarters often creates unique problems for health care facilities who may be subject to more stringent state and federal laws protecting patient confidentiality. While Bureau enumerators are often aware of HIPAA’s provisions permitting patient information to be shared absent a patient’s authorization when it is required by law, such as to comply with Census requirements, enumerators are frequently unaware of the more stringent laws that may be applicable to residential treatment facilities providing SUD and other sensitive services. These more stringent laws often do not permit information that would identify resident patients as recipients of such services to be provided to the Bureau absent signed patient authorizations.
For example, residential SUD programs subject to 42 CFR Part 2 (“Part 2 Programs”), must comply with requirements that “[t]he presence of an identified patient in a health care facility or component of a health care facility which is publicly identified as a place where only SUD diagnosis treatment or referral for treatment is provided may be acknowledged only if the patient’s written consent is obtained….”[1] Such escalated privacy requirements create unique, but not unsurmountable, issues when it comes to Census enumeration.
Compliance Strategy
During the 2010 Census, SAMHSA provided an official letter that set forth two compliant processes for Part 2 Programs to provide information to the Bureau without violating the federal SUD confidentiality provisions. While SAMHSA has not issued a similar letter yet with respect to the 2020 Census, their earlier guidance appears as applicable and compliant today as it was in 2010. Therefore, a Part 2 Program could use either of the two options presented back in 2010 to comply with both its 2020 Census obligations and current patient confidentiality requirements. Additionally, we believe that the processes outlined would likely also provide a mechanism for other residential treatment facilities subject to more stringent state or federal patient privacy laws to comply with their Census obligations without violating such laws, so long as such laws provide for the provision of identifiable information with patient consent and de-identified information without patient consent.
In either case, prior to Census enumeration, facility staff should inform resident patients that the Census form will ask that people who think they will be counted elsewhere (e.g., by a family member or roommate) supply a name and/or permanent address to avoid being counted twice. However, providing such information is voluntary and patients are not required to provide their name, address or any other information that would identify them as a patient of the facility. While Census forms do not require patient-identifying information, the Bureau does ask that patients be accounted for in some manner. Therefore, random numbers (i.e., Patient 1, Patient 2, etc.), room numbers, or another non-identifiable form of tracking code should be used in lieu of patient names.
Option 1: Using a Staff Member Enumerator
- A facility staff member may attend a 4-hour free training to become a Census enumerator. This is required in order to distribute Census forms.
- The trained staff member will then distribute official Census forms to the patients on the premises, answer questions about the forms, collect the forms after they are completed and sealed in envelopes, and interview those unable to complete the forms without assistance.
- The trained staff member providing the forms should remind patients that providing their name or other identifying information is optional.
- For patients who choose not to identify themselves, the forms may be turned over by the trained staff member to the Census without compromising patient confidentiality.
- For patients who do identify themselves, such as by writing their name or home address on the form, the facility must obtain a signed authorization from the patient prior to permitting the trained staff member to turn in the forms.
Option 2: Using a Bureau Enumerator
- The facility should contact the Bureau’s local district office to discuss the best way to have an enumerator present on-site. Enumerators are required to hand deliver Census forms and are not allowed to simply drop off Census forms with a facility unless it has a sworn enumerator on staff, as discussed above.
- The facility should provide the enumerator with notice that because of federal and/or state privacy laws, the enumerator may not re-disclose to anyone, directly or indirectly, that persons they interact with are patients of the facility.
- Prior to the enumerator’s arrival, the facility is required to either:
- Seek signed authorizations from each patient permitting the enumerator to provide them with a Census form in person or interview them if they require assistance completing the form; or
- Provide a secure room for the enumerator to stay in, and provide each patient the opportunity to voluntarily go to the room to pick up forms or be interviewed. When this method is used the patient would choose to self-identify themselves to the enumerator and therefore the facility would not be disclosing information that identifies the patient.
- The facility should honor the wish of any patient who does not want to see or speak with the enumerator and shelter them from the enumerator while present on-site.
- The enumerator will ask the facility director to provide basic information to complete forms for those patients who choose not to see or speak with the enumerator. However, the facility director is free to decline to provide any information that could identify a patient.
Practical Takeaways
The 2020 Census is once again raising confidentiality concerns for residential treatment facilities that provide SUD and other sensitive services and are required to comply with strict state and federal patient privacy laws protecting patient identity. Where such privacy laws do not include an exception applicable to the Census group enumeration provisions, such as HIPAA’s allowance to disclose information whenever required by law, these providers must be extremely careful in providing identifiable information to Bureau enumerators. Unless SAMHSA issues updated guidance, one of the two options promoted by SAMHSA during the 2010 Census, as summarized above, could likely be utilized by residential treatment facilitates to provide required information to Bureau enumerators in a manner that complies with state and federal privacy laws.
If you need assistance evaluating these options or if you have specific questions about a state or federal patient privacy law as it relates to 2020 Census obligations, please contact:
- Stephane Fabus at (414) 721-0904 or sfabus@wp.hallrender.com; or
- Your regular Hall Render Attorney.
[1] 42 C.F.R. § 2.13(c)(1).
