Att H - Chain Outreach Materials

Attachment H-Chain outreach package 5-8.pdf

Data Collection for the Residential Care Community and Adult Day Services Center Components of the National Study of Long-term Care Providers

Att H - Chain Outreach Materials

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Attachment H: RCC and ADSC Chain Outreach Package
H1

H2

RCC Chain Outreach Package
• Chain NCHS Cover Letter with FAQs
• NCHS Data Brief
• NCHS Confidentiality Brochure
• Letter of Support
ADSC Chain Outreach Package
• NCHS Cover Letter with FAQs
• ADSC Brochure
• NCHS Confidentiality Brochure
• Letter of Support

1

Attachment H1-RCC Chain Outreach Package-NCHS Cover Letter with FAQs
[NCHS Letterhead]
Date
Position
Name of Organization
Address of Organization
Organization City, State, Zip Code
Dear :
The Centers for Disease Control and Prevention’s National Center for Health Statistics is conducting the National
Study of Long-Term Care Providers (NSLTCP). This new national study will collect information every two years
about residential care communities, adult day services centers, home health agencies, hospice agencies, and
nursing homes. Data obtained will be used to help inform long-term care providers, planners, researchers, and
policymakers about community-based care, which is increasingly becoming an important part of the long-term
care continuum in this country.
This letter is to inform you that one or more of the residential care communities in your organization may be
invited to participate in NSLTCP. This study includes a nationwide survey of about 11,000 residential care
communities. They will be requested to provide factual and numerical information, such as community
characteristics (size, ownership, staffing, and services provided) and aggregate resident characteristics
(demographics and functional status). No information about individual residents will be collected. Answering the
questions will take about 30 minutes on average.
Information will be collected primarily by mail-in questionnaire and secure web-based interview. You may view
the questionnaire at ___________________________. All information collected will be held in the strictest
confidence according to section 308(d) of the Public Health Service Act (42, U.S. Code, 242m(d) and the
Confidential Information Protection and Statistical Efficiency Act (Title 5 of PL 107-347). The collected
information will not be published or released in any form if the individual establishment is identifiable unless the
individual or establishment has consented to such release.
Participation is voluntary; however, I want to emphasize that it is important that we obtain data from all sampled
residential care communities to achieve statistically accurate findings. I ask you to support and encourage the
members of your organization who are contacted to complete this survey. The most reliable information comes
from conducting interviews directly with providers themselves. We need their help to make this study a success.
If you have any questions, please call an NSLTCP representative at (XXX) XXX-XXXX or go to the CDC
website at http://www.cdc.gov/nchs/nsltcp.htm.
I greatly appreciate your cooperation.
Sincerely,

Edward J. Sondik, Ph.D.
Director, National Center for Health Statistics

2

National Survey of Long-Term Care Providers (NSLTCP)
Frequently Asked Questions

Who designed this study? What issues is it examining?
Researchers at CDC’s National Center for Health Statistics (NCHS) designed the National Study of Long-Term Care
Providers (NSLTCP). Over the past several years, representatives from the assisted living industry, family care
homes, adult day services centers, and residential care helped to design the study questions and protocol. NSLTCP
will track trends in the supply and use of residential care, the characteristics and practices of residential care
communities, and the characteristics of residential care residents.
Why should our communities participate?
NCHS recognizes that residential care communities are an important part of the long-term care spectrum in the
United States. NCHS recently completed the first ever nationwide study of residential care facilities (see enclosed
Data Brief). NSLTCP is similar to surveys NCHS has done for other types of long-term care providers, such as
nursing homes, hospice, and home health care agencies. When your communities participate you help ensure that the
survey data for residential care communities are up-to-date and reflect an unbiased national sample that health care
planners and policymakers can use to inform long-term care policy.
What other residential care communities are being contacted to participate in this survey?
The survey includes approximately 11,000 residential care communities operating in the United States. This is a
random national sample, and we do not release the names of these communities that participate to anyone. This is to
protect the privacy of individual places and the residents they serve.
Where did you get the names of the residential care communities?
Individual state licensing agencies provided the names of all licensed, certified or otherwise regulated residential care
communities in their respective states.
Will the results be made public, and if so when and where?
A summary report is anticipated for December 2013. A public use dataset will also be available December 2013.
These materials will be made available online at http://www.cdc.gov/nchs/nsltcp.htm.If you would like to be
informed when they are available you may want to join the Long-Term Care ListServ at
http://www.cdc.gov/nchs/dhcs/longterm_listserv.htm. Note also that identifying information about participants will
not be contained in the public use dataset.
I approve of communities in my organization participating. Who do I notify?
Please convey to your community directors that they have your approval to participate in the NSLTCP if they are
invited to do so.
Can I tell you which of our communities to contact?
The communities were selected using a scientific process to draw a statistically valid random sample. If we were to
switch communities the sample would no longer be random and unbiased and the study data will not be valid.
Will information be held confidential?
Yes. NSLTCP is authorized by Congress in Section 306 of the Public Health Service Act (42 USC 242K). All
information collected in this survey will be held in the strictest confidence according to law [Section 308 (d) of the
Public Health Service Act (42 United States Code 242m (d) and the Confidential Information Protection and
Statistical Efficiency Act (PL 107-347)]. Information collected in this survey may be used only for statistical
purposes. Any government staff, contractor, or agent who willfully discloses confidential information may be subject
to a jail term or a $250,000 fine.
Who supports this study?
This survey is supported by American Seniors Housing Association (ASHA), Assisted Living Federation of America
(ALFA), LeadingAge, and the National Center for Assisted Living/American Health Care Association
(NCAL/AHCA). The enclosed letter of support provides this specific information.
3

Attachment H1-RCC Chain Outreach Package-Place holder for NSRCF Resident Data Brief
[screenshot]
Entire report found at:
http://www.cdc.gov/nchs/data/databriefs/db91.pdf

4

Attachment H1-RCC Chain Outreach Package-NCHS Confidentiality Brochure

5

6

Attachment H1-RCC Chain Outreach Package-Letter of Support

In 2012, CDC’s National Center for Health Statistics (NCHS) will be
launching the National Study of Long-Term Care Providers (NSLTCP),
a first ever national study of the major providers of long-term care. This
data collection effort will include a representative sample of residential
care and assisted living communities across the country.

National data collection will start in September 2012 and end in January
2013. The following organizations encourage your participation:
•
•
•
•

American Seniors Housing Association (ASHA)
Assisted Living Federation of America (ALFA)
LeadingAge
National Center for Assisted Living/American
Association (NCAL/AHCA)

Health

Care

Residential care directors will be asked to provide information about
their communities through a mail, Web or telephone survey and will
take about an hour to complete. The survey includes questions about
residential care services, staffing, and practices, and resident
demographics, physical and cognitive functioning, and payment
sources. This information will help policy makers, health care planners,
and residential care/assisted living providers better understand, plan
for, and serve the future long-term care needs of the aging population.

While data from this survey will be made publicly available, all data will
be kept confidential and will be aggregated, so that the names of the
communities, staff, residents and respondents will not be identifiable

7

Attachment H2-ADSC Chain Outreach Package-Cover letter with FAQs
[NCHS Letterhead]
Date
Position
Name of Organization
Address of Organization
Organization City, State, Zip Code
Dear :
The Centers for Disease Control and Prevention’s National Center for Health Statistics is conducting the National
Study of Long-Term Care Providers (NSLTCP). This new national study will collect information every two years
about adult day services centers, residential care communities, home health agencies, hospice agencies, and
nursing homes. Data obtained will be used to help inform long-term care providers, planners, researchers, and
policymakers about community-based care, which is increasingly becoming an important part of the long-term
care continuum in this country.
This letter is to inform you that adult day services centers in your organization are being invited to participate in
NSLTCP. This study includes a nationwide survey of about 5,000 adult day services centers. They will be
requested to provide factual and numerical information, such as center characteristics (size, ownership, staffing,
and services provided) and aggregate participant characteristics (demographics and functional status). No
information about individual participants will be collected. Answering the questions will take 30 minutes on
average.
Information will be collected primarily by mail-in questionnaire and secure web-based interview. You may view
the questionnaire at ___________________________. All information collected will be held in the strictest
confidence according to section 308(d) of the Public Health Service Act (42, U.S. Code, 242m(d) and the
Confidential Information Protection and Statistical Efficiency Act (Title 5 of PL 107-347). The collected
information will not be published or released in any form if the individual establishment is identifiable unless the
individual or establishment has consented to such release.
Participation is voluntary; however, I want to emphasize that it is important that we obtain data from all adult day
services centers to achieve statistically accurate findings. I ask you to permit, and encourage, the members of your
organization who are contacted to complete this survey. The most reliable information comes from conducting
interviews directly with providers themselves. We need their help to make this study a success. If you have any
questions, please call an NSLTCP representative at (XXX) XXX-XXXX or go to the CDC website at
http://www.cdc.gov/nchs/nsltcp.htm.
I greatly appreciate your cooperation.
Sincerely,

Edward J. Sondik, Ph.D.
Director, National Center for Health Statistics

8

National Survey of Long-Term Care Providers (NSLTCP)
Frequently Asked Questions

Who designed this study? What issues is it examining?
Researchers at CDC’s National Center for Health Statistics (NCHS) designed the National Study of Long-Term Care
Providers (NSLTCP). Representatives from the adult day services sector helped to design the study questions and
protocol. NSLTCP will track trends in the U.S. adult day services programs, including center supply and use,
characteristics and practices of centers, and characteristics of center participants.
Why should our facilities participate?
NCHS recognizes that adult day services programs are an important component of long-term care in the United
States. NSLTCP will be similar to surveys NCHS has done for other types of long-term care providers, such as
assisted living communities, nursing homes, and home health care agencies. When you allow your centers to
participate you help ensure that the survey data for adult day services centers are up-to-date and reflect an unbiased
national sample that health care planners and policymakers can use to inform long-term care policy.
What other adult day services centers are being contacted to participate in this survey?
The survey includes approximately 5,000 adult day services centers operating in the United States. We do not
release the names of these centers that participate to anyone. This is to protect the privacy of individual places and
the participants they serve.
Where did you get the names of the adult day services centers?
A nonprofit association of adult day services centers compiled a list of all adult day services centers in the U.S. under
contract to NCHS.
Will the results be made public, and if so when and where?
A summary report is anticipated for December 2013. A public use dataset will also be available December 2013.
These materials will be made available online at http://www.cdc.gov/nchs/nsltcp.htm. If you would like to be
informed when they are available, you may want to join the Long-Term Care ListServ at
http://www.cdc.gov/nchs/dhcs/longterm_listserv.htm. Note also that identifying information about participants will
not be contained in the public use dataset.
I approve of centers in my organization participating. Who do I notify?
Please convey to your center directors that they have your approval to participate in NSLTCP if they are invited to do
so.
Will information be held confidential?
Yes. NSLTCP is authorized by Congress in Section 306 of the Public Health Service Act (42 USC 242K). All
information collected in this survey will be held in the strictest confidence according to law [Section 308 (d) of the
Public Health Service Act (42 United States Code 242m (d) and the Confidential Information Protection and
Statistical Efficiency Act (PL 107-347)]. Information collected in this survey may be used only for statistical
purposes. Any government staff, contractor, or agent who willfully discloses confidential information may be subject
to a jail term or a $250,000 fine.
Who supports this study?
This survey is supported by the National Adult Day Services Association (NADSA). The enclosed letter of support
provides this specific information.

9

Attachment H2-ADSC Chain Outreach Package-ADSC Brochure

ADULT DAY SERVICES (ADS) CENTERS BROCHURE (4-page foldout)

National Study of Long-Term Care Providers
National Health Care Surveys

Cover page NSLTCP artwork to be developed

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention
National Center for Health Statistics

10

Introduction
The National Study of Long-Term Care Providers (NSLTCP) is a new national data collection effort to gather
ongoing information about the characteristics of adult day services centers and other long-term care providers.
Also included are residential care/assisted living communities, nursing homes, home health agencies and
hospice agencies. The Centers for Disease Control and Prevention’s National Center for Health Statistics
sponsors NSLTCP. This brochure describes the adult day services component of this ground-breaking study.

Importance
In 2010, there were an estimated 4,600 adult day services centers in the United States that served about
260,000 older persons and younger adults with disabilities on any given day.1 Adult day services centers are an
important and growing segment of the long-term care provider industry, serving community-based individuals,
and their family caregivers, who need supportive services to enable them to continue to reside at home. This
study, to be conducted every two years, will provide an up- to-date snapshot of the characteristics of these
centers and the participants who rely on their services. The information collected will provide reliable national
and state-level estimates of key policy-relevant characteristics and practices of adult day services centers. These
data will help characterize how these centers meet the needs of elders and adults with disabilities and help
shape future long-term care policies.

Survey and content
Data collection is estimated to begin Fall 2012. All 5,000 adult day services centers throughout the United States
are included in NSLTCP. RTI International is collecting the data for the National Center for Health Statistics.
Directors are contacted by mail to complete the survey. No information about individual adult day services
center participants will be collected. Information will be collected on these and other topics:
About adult day services centers• Basic characteristics- ownership, average daily attendance, years in operation
• Services provided- social work, case management, therapeutic, transportation
• Staffing- types and numbers of employees and staff under contractual arrangement
• Practices-Depression screening, use of Electronic Health Records, chronic disease management, personcentered care

1

2010 MetLife, Inc., Ohio State University College of Social Work, National Adult Day Services Association (NADSA) National
Study of Adult Day Services.
11

About participants- aggregate level distributions
• Demographics
• Physical functioning
• Cognitive functioning
• Alzheimer’s disease and other dementias
• Participant transitions

Goals and intended uses of the data
The National Study of Long-Term Care Providers is designed to provide national data and state-level data where
feasible, about the characteristics of adult day services centers and other long-term care providers, the services
they offer, general information on staffing, demographics and health of the clientele they serve, and payment
for these services. These data can then be used by providers, consumers, policymakers, and researchers to:
•
•
•
•
•
•

estimate the U.S. national supply of adult day services centers and other types of paid regulated longterm care providers;
estimate key policy-relevant characteristics and practices of these long-term care providers;
estimate the national use of these providers;
estimate key policy-relevant characteristics of these providers nationally; and
within the above goals, produce state-level estimates for as many states as feasible with the National
Center for Health Statistics’ confidentiality and reliability standards;
enable comparisons within and between different types of long-term care providers at a similar point in
time as well as monitoring trends over time.

Confidentiality
The Centers for Disease Control and Prevention’s National Center for Health Statistics is required by law to
maintain the confidentiality of data it collects. All data that directors provide will be kept in strict confidence and
will be used only for statistical purposes. All information, publications, and data files will be released in such a
way that no individual provider, staff, or participant can be identified. Participants receive assurance of this
confidentiality under the Public Health Services Act. Any National Center for Health Statistics staff, contractor, or
agent who willfully discloses confidential information may be subject to a jail term or a $250,000 fine.

Data dissemination
The adult day services centers and assisted living/residential care survey data will be available in public- use files
from the NSLTCP website: http://www.cdc.gov/nchs/nsltcp.htm by late 2013. A long-term care overview
report is also planned for release in late 2013 and will be on the NSLTCP website.

12

NSLTCP supporters


National Adult Day Services Association (NADSA)



American Heath Care Association



American Seniors Housing Association



Assisted Living Federation of America



Center for Excellence in Assisted Living (CEAL)



LeadingAge



National Association of Home Care and Hospice



National Center for Assisted Living



National Home and Palliative Care Organization

To learn more about NSLTCP call
301–458–4747, or visit the NSLTCP website:

http://www.cdc.gov/nchs/nsltcp.htm

13

Attachment H2-ADSC Chain Outreach Package-NCHS Confidentiality Brochure

14

15

Attachment H2-ADSC Chain Outreach Package-Letter of Support

The National Study of Long-Term Care Providers (NSLTCP) is the first ever federal study of adult day services
(ADS) centers. For the first time, the NSLTCP will allow us to compare our services, participants, and funding
to other providers such as home health care and assisted living communities. The information is critical as we
continue to develop adult day services in this current economic environment. The National Adult Day
Services Association encourages and appreciates your participation in this important, national research
effort.
NSLTCP is designed to provide national informationand where possible state informationabout ADS
centers and their participants. ADS center directors will be asked to provide information about their centers
through a mail, Web, or telephone survey. The survey includes questions about services, staffing, and practices;
participants’ physical and cognitive functioning; and sources of payment for participants’ care. This information
will help policymakers, health care planners, and ADS providers better understand, plan for, and serve the
future long-term care needs of older persons and younger adults with disabilities. All individual data will be
kept confidential and the data will be aggregated, so that the names of ADS centers, staff, participants
and respondents will not be identifiable.
The study is being conducted by the National Center for Health Statistics (NCHS), an agency of the Centers for
Disease Control and Prevention (CDC). National data collection will start in September 2012. All ADS centers
will be invited to participate in the national survey. If you have any questions or concerns, please feel free to
contact me at (877) 745-1440.
Teresa Johnson

Managing Director

16


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