Residential Care Community Survey Frequently Asked Questions
What is the National Post-Acute and Long-Term Care Study (NPALS)?
NPALS was formerly called the National Study of Long-Term Care Providers or NSLTCP. It is sponsored by the National Center for Health Statistics (NCHS) within the Centers for Disease Control and Prevention (CDC). NPALS produces reliable national and state statistical estimates, where possible, on the supply, use, and characteristics of assisted living and similar residential care communities, adult day services centers, nursing homes, home health agencies, hospice agencies, long-term care hospitals, and inpatient rehabilitation centers.
NCHS conducts NPALS every two years to collect up-to-date information about residential care communities, adult day services centers and other long-term care providers and the people they serve, and to detect changes that are occurring in the long-term care industry over time. Results and publications are available online at https://www.cdc.gov/nchs/npals/studyresults.htm.
Why is NPALS being conducted?
The number of people in the United States needing long-term care services is increasing and residential care communities are an important part of the long-term care services and supports spectrum. NPALS aims to provide an accurate picture of residential care communities and other types of long-term care providers, the range of services they provide, and key characteristics of the people they serve. With these data, we will gain greater insight into how residential care communities meet the needs of the older population and younger disabled adults and will also help to shape long-term care policies.
How will NPALS data be collected?
NPALS survey data are collected from residential care community administrators, directors, owners, or operators or their designated staff through provider and services user questionnaires. RTI International is an independent, nonprofit research organization that is under contract with NCHS to collect the NPALS survey data. RTI International is a designated agent of NCHS.
Residential care communities have the option to complete and submit the provider questionnaire online or by mailing back the completed hard copy. The services user questionnaire will be completed by telephone where directors will be asked to provide information about two randomly selected residents. The director will answer questions about the two residents based on information they know about the residents as well as information they can obtain from their records.
To view a copy of the provider and services user questionnaires, go to:
Does NPALS include data for other long-term care providers, like nursing homes?
Yes. NPALS obtains administrative data (i.e. claims, assessment, and regulatory survey and certification data) collected by the Centers for Medicare & Medicaid Services (CMS) for home health, hospice, nursing home, long-term care hospital and inpatient rehabilitation sectors. NCHS obtains these administrative data under data use agreements with CMS.
What type of information do the NPALS questionnaires collect? What are the types of questions asked?
NPALS collects information about the characteristics of the community and its users, such as size, ownership, computerized capabilities, services provided, resident demographics and health and physical functioning, and numbers and types of staff among other things. You can view a copy of the questionnaires here.
For what time period do I complete the questionnaire?
The questionnaires should be completed using the most current information available unless question text specifies the reference period (such as during the last 30 days, in the last 90 days, in the last 12 months).
What is the closing date to complete the questionnaires?
The middle of March 2023. However, we urge all respondents to complete their questionnaires as soon as possible to avoid receiving follow-up mailings or calls about participating in the study.
How often will this survey take place?
We plan to conduct this survey every other year, occurring in even years (2022, 2024, 2026, etc.).
Should I complete questionnaires if I participated in NPALS a couple of years ago?
Yes. Your participation in this 2022 survey is important. NPALS (formerly known as the National Study of Long-Term Care Providers or NSLTCP) is conducted every two years to obtain up-to-date information about residential care communities, other long-term care services providers, and the people they serve, to provide you and other valued stakeholders with current information and to detect changes in the long-term care industry over time.
Whom can I contact if I have additional questions about NPALS?
You can call our toll-free number, (855) 500-1435, to talk with a study representative about the National Post-acute and Long-term Care Study.
If you have any further questions or comments related to participating in this study, please contact:
NPALS Project Officer
National Center for Health Statistics
Acting Chief, Long-Term Care Statistics Branch
3311 Toledo Road
Hyattsville, Maryland 20782
NPALS Survey Manager
National Center for Health Statistics
Social Scientist, Long-Term Care Statistics Branch
3311 Toledo Road
Hyattsville, Maryland 20782
How do I know NPALS is a legitimate study? Who sponsors this study? Who supports this study?
NCHS is the federal government’s principal health statistics agency. The initial authority for NCHS surveys is the National Health Survey Act (Public Law 84-652), which was enacted by Congress on July 3, 1956.
Because of its importance, NPALS has received support from national organizations representing residential care communities. The Center for Excellence in Assisted Living (CEAL) and its collaborating organizations, as well as American Seniors Housing Association (ASHA), Argentum, LeadingAge, and the American Health Care Association/National Center for Assisted Living (AHCA/NCAL) support NPALS and encourage your participation in NPALS. You can see their letter of support at the RCC Participants page.
Who will see my information?
We take your privacy very seriously. All information that relates to or describes identifiable characteristics of individuals, a practice, or an establishment will be used only for statistical purposes. This means that your information will be combined with other people’s information in a way that protects everyone’s identity. As required by federal law, only those NCHS employees working on the project, our specially designated agents, and our full research partners can see your personal information. Anyone else is allowed to use your data only after all information that could identify you has been removed.
NCHS staff, contractors, and agents will not disclose or release responses in identifiable form without the consent of the individual or establishment in accordance with section 308(d) of the Public Health Service Act (42 U.S.C. 242m(d)) and the Confidential Information Protection and Statistical Efficiency Act of 2018 (CIPSEA Pub. L. No. 115-435, 132 Stat. 5529 § 302). In accordance with CIPSEA, every NCHS employee, contractor, and agent has taken an oath and is subject to a jail term of up to five years, a fine of up to $250,000, or both if he or she willfully discloses ANY identifiable information about you. In addition to the above cited laws, NCHS complies with the Federal Cybersecurity Enhancement Act of 2015 (6 U.S.C. §§ 151 and 151 note) which protects Federal information systems from cybersecurity risks by screening their networks.
Will my name and information be held confidential?
Yes. All information collected is the property of NCHS and is kept strictly confidential. The identity of specific residential care communities and staff will not be released in any manner, except to NCHS staff, contractors, and designated agents when required and with necessary security controls. Results of the study will be published using only aggregated data that will not allow identification of any individual residential care community.
If you have any questions about confidentiality, call NCHS’ Confidentiality Officer at (888) 642-4159.
Does the HIPAA Privacy Rule allow my residential care community to participate in NPALS?
Yes. Since NPALS does not collect any personally identifiable information (e.g., personal identifiers such as resident name, social security number, or birth date of residential care community residents, the study is not subject to the Privacy Rule mandated by the Health Insurance Portability and Accountability Act (HIPAA). In other words, your community can participate in NPALS, as the Privacy Rule mandated by HIPAA does not apply to NPALS.
Is participation voluntary? Is this survey mandatory?
Your participation in this survey is voluntary, but will assist greatly in helping to further our nation’s understanding of the long-term care needs of the older population and younger disabled adults.
You represent not just your own residential care community, but also others that are of the same size as yours and in the same part of the country as yours. If your community does not participate, its unique qualities will not be represented in NPALS, making the results less accurate.
How was my residential care community selected?
Your residential care community was scientifically and randomly selected to represent not only your residential care community, but also other comparably sized residential care communities like yours across the United States. Residential care communities licensed to exclusively serve persons with intellectual or developmental disabilities or severe mental illness are excluded. Nursing homes are excluded as well.
What other residential care communities are being contacted to participate in this survey?
The survey includes a scientifically selected, nationally representative sample of 2,090 residential care communities operating in the United States. We do not release the names of sampled communities to anyone. This is to protect the privacy of individual places and the residents they serve.
Why was my residential care community not selected?
The survey includes a scientifically selected, nationally representative sample of 2,090 residential care communities operating in the United States. Your residential care community may have been on our master list, but was not sampled for this wave.
My community has changed the way we provide services/the services we offer due to the COVID-19 pandemic. Can we still participate?
Yes. The survey provides instructions for residential care communities that have been impacted by the COVID-19 pandemic. We understand some questions may be difficult to answer. Please answer to the best of your ability.
This community is temporarily closed due to the COVID-19 pandemic, but we hope to reopen. Should we participate?
The NPALS survey will remain open until mid-March 2023. If you plan to re-open before then, you can wait to take the survey until you re-open. If you don’t plan to re-open by March 2023, we would still like to receive your completed survey. The survey provides instructions for residential care communities that are temporarily closed due to COVID-19. We understand some questions may be difficult to answer. Please answer to the best of your ability.
Why should I participate in this survey?
CDC’s National Center for Health Statistics (NCHS) recognizes that residential care communities are an important component of the long-term care spectrum in the United States. NCHS’ National Post-acute and Long-term Care Study (NPALS) tracks changes, every two years, in the supply and use of seven major sectors of long-term care services— assisted living and similar residential care, adult day, home health, nursing home, hospice, long-term care hospital, and inpatient rehabilitation. When you participate in NPALS, you help ensure that the survey data for residential care communities and current residents are up-to-date and accurately portray your industry to health care planners, policymakers, consumers, researchers, the media, and the public.
Why am I being asked to complete the questionnaires? Am I the only one who can complete the questionnaires?
The questionnaires are intended to be completed by someone who is knowledgeable about the day-to-day operations and the residents served. Typically, this person is an administrator, director, owner, or operator. The questionnaires can also be completed by someone the administrator/director designates as qualified to complete them, such as an assistant director.
Why can’t some other community take our place?
Your community was scientifically and randomly selected to represent both your residential care community and others like yours. You cannot be replaced. Your participation is important to ensure an accurate picture of your industry to health care planners, policymakers, consumers, researchers, the media, and the public.
I received a questionnaire packet with a hardcopy questionnaire and information to complete the survey via Web. Does it matter which way I complete the questionnaire?
It doesn’t matter which way you complete the provider questionnaire. You can complete it however is most convenient for you, but you do not need to complete it more than once for the same place.
Are residential care communities for the developmentally disabled included in NPALS?
Yes. However, if residential care communities are licensed to exclusively serve developmentally disabled residents, these communities are excluded from NPALS.
What is the minimum length of time that a residential care communities should be operating to be eligible to complete the survey?
There is no set minimum length of time.
What if I am part of a corporate chain? What if I need chain approval? What if I need supervisor approval?
Below is a web site with information about the NPALS study and a toll-free number to call with questions. You can share this information with the person who can give approval for your residential care community to participate.
WEB SITE: https://www.cdc.gov/nchs/npals/index.htm
TOLL-FREE NUMBER THAT RINGS TO THE HELP DESK: (855) 500-1435
What if my organization operates multiple residential care communities?
If your organization operates multiple residential care communities, more than one of your residential care communities may be sampled for NPALS. We need questionnaires completed for each sampled residential care community in your organization. It is important that you complete questionnaires for each sampled residential care community separately so that NCHS can make accurate estimates of residential care communities in the United States. Please do not provide answers for multiple communities on one questionnaire.
What if I received a survey for two or more residential care communities in my organization?
These communities were invited to participate in the study. Each sampled community will receive its own questionnaires and the responses to the questions should be only about the community whose name and address appear in the label. It is important that you complete the survey for each community separately so the government can make accurate estimates of residential care communities in the United States.
How long will it take to complete the NPALS questionnaire?
The provider and services user questionnaires each take, on average, about 30 minutes to complete.
What if I do not have enough time?
The questionnaire takes, on average, about 30 minutes to complete.
Some people find that it is faster or more convenient to complete the provider questionnaire online than by hardcopy. You can start and stop when you need to, and come back to complete it.
It takes, on average, about 30 minutes to complete the services user questionnaire. You will be asked to provide a limited amount of information about just two residents over the telephone. You can make an appointment for the telephone interview that is convenient for you.
Will I be compensated for my time?
Since NCHS is a federal government agency, we are not allowed to compensate our respondents. However, we release reports using data where you are able to compare your residential care community with the residential care industry on key characteristics. To see the free products available for your use, please see the data brief in your advance packet or other reports and publications here.
You can also use our state tables to compare your residential care community with other communities in your state. Click to view the 2012, 2014, and 2016 NSLTCP state tables.
Can I complete a hardcopy questionnaire instead of completing it online?
Yes. The provider questionnaire and a pre-addressed, postage-paid envelope for returning it will be sent to you.
If I choose to complete the Web questionnaire, can I stop partway through and start again where I left off at a later time?
Yes. If you are unable to complete the Web provider questionnaire in one sitting, the answers you entered will be saved, and you can pick up where you left off at a later time. You will not need to start the Web provider questionnaire again from the beginning.
Will I be able to print a copy of the completed Web provider questionnaire for my records?
Where should I mail my completed hardcopy provider questionnaire?
Please return your completed hardcopy provider questionnaire in the enclosed pre-addressed, postage-paid envelope. The address is: NPALS, RTI International, Attn: Data Capture, 5265 Capital Boulevard, Raleigh, NC 27690-1653.
What do I need to do to prepare for the services user telephone questionnaire appointment?
We ask that you print out a list of the residents currently living in your residential care community as of midnight the night before the services user telephone questionnaire appointment. You will also need the showcards that we either sent to you or asked you to view or print from the Web.
To view or print another copy of the showcards, click here.
Will the results be made public?
Yes. NCHS intends to publish reports using 2022 NPALS survey data starting in late 2023. Reports will be published here.
If you would like to be notified when new NPALS products are available, please subscribe to the NCHS long-term care listserv by going here and completing the steps.
While results from this survey will be made publicly available, all data will be kept strictly confidential and aggregated, so that the names of the communities, staff, residents, and respondents will not be identifiable.
How will NPALS data be used?
NPALS data will be used by the U.S. Congress and other public health policy makers, government agencies, the long-term care industry, academic institutions, professional associations, consumers, providers, and health services researchers, as well as the media and the public, to describe and understand the changes that occur in the delivery of long-term care services.
The Study Results and Publications page contains a variety of free reports and other products that have been published using data from previous waves. If you would like to be notified when new products are available, we invite you to subscribe to the NCHS long-term care listserv.