Adult Day Services Center Survey Frequently Asked Questions

What is the National Post-Acute and Long-Term Care Study (NPALS)?

NPALS (formerly known as National Study of Long-Term Care Providers or NSLTCP)  is a groundbreaking initiative 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 adult day service centers (RCCs), adult day services centers (ADSCs), nursing homes, home health agencies,  hospice agencies, long-term care hospitals, and inpatient rehabilitation centers.

NCHS conducts NPALS every two years in order to provide accurate, up-to-date information about adult day services centers, residential care communities, 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 from the 2012, 2014, 2016, and 2018 waves 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 adult day services centers are an important part of the long-term care services and supports spectrum. NPALS aims to provide an accurate picture of adult day services centers 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 adult day services center directors/administrators or their designated staff through a questionnaire.  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.

Starting in November 2020, invited adult day services centers will be sent information on how to complete the questionnaire.  Adult day services centers have the option to complete and submit the survey either by web using a secure network, or by mailing back the completed hard copy questionnaire using the enclosed return envelope.

To view a copy of the 2020 ADSC questionnaire, go to: https://www.cdc.gov/nchs/data/npals/2020-NPALS-ADSC-Questionnaire-Center.pdf pdf icon[PDF – 1 MB]

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 center and its users, such as size, ownership, computerized capabilities, services provided, participant demographics and health and physical functioning, and numbers and types of staff among other things. To view a copy of the questionnaire, go to: https://www.cdc.gov/nchs/data/npals/2020-NPALS-ADSC-Questionnaire-Center.pdf

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 beginning of July 2021.  However, we urge all respondents to complete their questionnaire as soon as possible to avoid receiving follow-up mailings or calls inviting them to participate in the survey.

How often will this survey take place?

We plan to conduct this survey every other year, occurring in even years (2020, 2022, 2024, etc.).

Should I complete questionnaires if I participated in NPALS a couple of years ago?

Yes. Your participation in this 2020 survey is important. NPALS (formerly known as the National Study of Long-Term Care Providers or NSLTCP) is conducted every two years to obtain accurate, up-to-date information about adult day services centers, 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, (877) 256-8171, 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:

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 the importance of NPALS, the National Adult Day Services Association (NADSA), LeadingAge, and ADvancing States support NPALS and encourage your participation in NPALS.  You can see their joint letter of support at: https://www.cdc.gov/nchs/data/npals/adsc-letter-support.pdf pdf icon[PDF – 138 KB]

Who will see my information?

We take your privacy very seriously. The information you give us is used for statistical research only. 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 establishment in accordance with section 308(d) of the Public Health Service Act (42 U.S.C. 242m(d)) and Title III of the Foundations for Evidence-Based Policymaking Act of 2018 (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.

Will my name and information be held confidential?

Yes.  All information collected will be the property of NCHS and kept strictly confidential.  The identity of specific adult day services centers and staff will not be released in any manner, except to NCHS staff, contractors, and designated agents when required and with necessary controls.  Results of the study will be published using only aggregated data that will not allow identification of any individual adult day services center or staff.

If you have any questions about confidentiality, call NCHS’ Confidentiality Officer at (888) 642-4159.

Does the HIPAA Privacy Rule allow my adult day services center to participate in NPALS?

Yes. Since NPALS does not collect any protected health information (e.g., personal identifiers such as name, social security number, or birth date of adult day services center participants, the study is not subject to the Privacy Rule mandated by the Health Insurance Portability and Accountability Act (HIPAA).  In other words, your center 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 adult day services center, but also others that are of the same size as yours and in the same part of the country as yours. If your center does not participate, its unique qualities will not be represented in NPALS, thus making the results less accurate.

How was my adult day services center selected?  

All adult day services centers are invited to participate so that a complete picture of the adult day sector can be presented.  You represent not only your adult day center, but also other comparable adult day services centers across the United States.

 What other adult day services centers are being contacted to participate in this survey?

 The survey includes all 5,500 adult day services centers operating in the United States.  We do not release the names of these centers to anyone. This is to protect the privacy of individual places and the participants they serve.

Why was my adult day services center not selected?

The survey includes all 5,500 adult day services centers operating in the United States at the time when a list of centers was compiled. Your adult day services center may have opened after the list was compiled.

My center 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 adult day services centers 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 center is temporarily closed due to the COVID-19 pandemic, but we hope to reopen. Should we participate?

The NPALS survey will remain open until early July 2021.  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 July 2021, we would still like to receive your completed survey. The survey provides instructions for adult day care centers 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 adult day services centers 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 five major sectors of long-term care services—adult day, assisted living and similar residential care, 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 adult day services centers and enrolled participants 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 questionnaire is intended to be completed by someone who is knowledgeable about the day-to-day operations and the participants served. Typically, this person is an administrator or director. The questionnaire can also be completed by someone whom the administrator/director designates as qualified to complete it, such as an assistant director.

 Why can’t some other center take our place?

 Your center represents both your adult day services center 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 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 adult day service centers for the developmentally disabled included in NPALS?

Yes.

What is the minimum length of time that an adult day services center 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?

There is a website 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 center to participate.

https://www.cdc.gov/nchs/npals/index.htm

(877) 256-8171

What if my organization operates multiple adult day services centers? 

If your organization operates multiple adult day services centers, we  need a questionnaire completed for each adult day services center in your organization that was invited to participate. It is important that you complete a questionnaires for each center separately so that the government can make accurate estimates of adult day services centers in the United States. Please do not provide answers for multiple centers on one questionnaire.

What if I received a survey for two or more adult day services centers in my organization? 

These centers were invited to participate in the study.  Each invited ADSC site will receive its own questionnaire and the responses to the questions should be only about the center whose name and address appear in the label.  It is important that you complete the survey for each center separately so the government can make accurate estimates of adult day services centers in the United States.

How long will it take to complete the NPALS questionnaire?

The questionnaire takes, 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 questionnaire online than by hardcopy. You can start and stop when you need to and come back to complete it.

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 adult day services center with the adult day 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 at: https://www.cdc.gov/nchs/npals/reports.htm

 You can also use our state tables to compare your adult day services center with other centers in your state. You can access the 2012, 2014, and 2016 NSLTCP state tables at the following address: https://www.cdc.gov/nchs/npals/webtables.htm

Can I complete a hardcopy questionnaire instead of completing it online?

Yes. You may request to have a hardcopy questionnaire sent to you. The 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 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 questionnaire again from the beginning.

Will I be able to print a copy of the completed Web provider questionnaire for my records?

Yes.

Where should I mail my completed hardcopy provider questionnaire?

Please return your completed hardcopy 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.

Will the results be made public?

Yes. NCHS intends to publish reports using 2020 NPALS survey data starting in late 2021.  Reports will be published at https://www.cdc.gov/nchs/npals/reports.htm. If you would like to be notified when new NPALS products are available, please subscribe to the NCHS long-term care listserv by going to https://www.cdc.gov/nchs/npals/longterm_listserv.htm 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 centers, staff, participants, 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, 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 at https://www.cdc.gov/nchs/npals/studyresults.htm 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 at https://www.cdc.gov/nchs/npals/longterm_listserv.htm