ACL-Wide Policy and Guidance

Language Access Plan

ACL is committed to ensuring that all older adults and people with disabilities can access the programs and services we fund. Making information available in a variety of languages and formats - including sign language and easy-read formats that are more accessible to people with intellectual disabilities and people with limited English reading skills - is an important part of that commitment. ACL also holds itself to the highest standards of accessibility. This Language Access Plan was developed in accordance with the purpose and authorities described in the HHS Language Access Plan.

Public Access Plan

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ACL's Public Access Plan addresses access requirements for peer-reviewed scholarly publications and scientific data. It outlines requirements to make available to the public peer-reviewed publications and scientific data arising from research funded in whole or part by ACL. The new policy will be effective on December 31, 2025. Until the new policy is in place, ACL will continue to follow the previous Public Access Plan.

Tribal Consultation Policy

Download the Microsoft Word Document

This policy, released September 2024, highlights the importance of consultation with Indian tribes, as recognized in Executive Order 13175 in 2000, affirmed through Presidential Memoranda in 1994, 2004, 2009, and 2021, and strengthened through the Memorandum on Uniform Standards for Tribal Consultation signed on November 30, 2022. The policy supports several key goals associated with ACL’s programs and policies, including ensuring they address the health and human service disparities of Indians, maximize access to critical health and human services, and advance or enhance the social, physical and mental health, and economic status of Indians. To achieve these goals, to the extent practicable and permitted by law, it is essential that federally recognized Indian tribes and ACL engage in open, continuous, and meaningful consultation.

Providing Services to Non-Citizens

In a Federal Register Notice published on August 4, 1998, HHS provided a detailed interpretation of the phrase "federal public benefit," as used in Title IV of the Personal Responsibility and Work Opportunity Reconciliation Act of 1996, and identified the HHS programs that provide such benefits.
Non-citizens who are not "qualified aliens" as defined by PRWORA and who do not meet the requirements for the law's specified exceptions are not eligible to receive services through those programs. Non-citizens, regardless of their alien status, should not be banned because of their alien status from services provided by ACL programs that do not appear on this list. (Most ACL programs, including those funded under the Older Americans Act, are not on the list).

Program-Specific Policy and Guidance

Adult Protective Services

On May 7, 2024, ACL published a final rule to establish the first-ever federal regulations for adult protective services. The regulations take effect on June 7, 2024, but regulated entities have until May 8, 2028, to fully comply. ACL.gov/APSrule has the details.

Centers for Independent Living

Centers for Independent Living Guidance.: Visit this page for guidance and FAQs.

DD Act Programs

Developmental Disabilities Assistance and Bill of Rights Act (DD Act) guidance

In July 2015, ACL released a final rule providing guidance on implementing the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act).

The rule strengthens and provides clarity for critical programs that promote the independence, inclusion, and civil rights of Americans with developmental disabilities and their families.

AIDD also issued guidance memoranda throughout the years for DD Act-related programs, such as reporting requirements, transfering funds, and other areas of activity.

National Institute for Disability, Independent Living, and Rehabilitation Research

NIDILRR Regulation

This rule issued on July 1, 2016, implements the Workforce Innovation and Opportunity Act of 2014 and reflects the transfer of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) from the Department of Education to ACL within the Department of Health and Human Services (HHS). The previous regulations were issued by the Department of Education. The rulemaking consolidates the NIDILRR regulations into a single part, aligns the regulations with the current statute and HHS policies, and provides guidance to NIDILRR grantees.

Visit the Federal Register for the full regulation.

Expanded Public Access Plan 2024

Introduction

The Administration for Community Living (ACL) is an Operating Division within the Department of Health and Human Services (HHS). ACL’s mission is to maximize the independence, well-being, and health of older adults, people with disabilities across the lifespan, and their families and caregivers. ACL strives to achieve this mission, in part, by funding research mainly through discretionary grants administered by the National Institute on Disability, Independent living, and Rehabilitation Research (NIDILRR)—a Center within ACL. Making ACL-funded research results available at no cost through peer-reviewed publications and scientific data will enable the use of research-based information by various user communities to advance practices, policies, and systems to advance ACL’s mission.

ACL has an existing Public Access Plan that describes requirements for making peer-reviewed publications and scientific data that resulted from ACL-funded research publicly available. This existing plan is based on guidance in the Office of Science and Technology Policy (OSTP)’s February 22, 2013 memorandum entitled “Increasing Access to the Results of Federally Funded Scientific Research” (2013 Memo). ACL implemented its existing Public Access Plan in two phases. Public access to peer-reviewed publication requirements have been implemented since October 1, 2016, and public access to scientific data requirements have been implemented since October 1, 2017. These current requirements include making peer-reviewed scholarly publications publicly available within 12 months from the publication date and making applicable scientific data collected through the course of a grant award publicly available within 24 months from the award end date. These public access requirements are aimed at extramural research as ACL does not have an intramural research program.

On August 25, 2022, OSTP issued a memorandum entitled “Ensuring Free, Immediate, and Equitable Access to Federally Funded Research.” (2022 Memo) The 2022 Memo directed federal agencies to update their public access plan to expand public access to peer-reviewed scholarly publications and scientific data. ACL plans to address the elements in the 2022 Memo as described below, and plans to coordinate and collaborate with other federal agencies through the NSTC Subcommittee on Open Science for implementing aspects of its plan.

The expansion of public access requirements as listed in this plan will be incorporated into an updated ACL Public Access Policy. The updated policy will be released by December 31, 2024, and in effect by December 31, 2025.

Expanding public access to peer-reviewed scholarly publications

Element #1

Indicate how peer-reviewed scholarly publications will be made publicly accessible:

Plan to address element #1

ACL will continue to make peer-reviewed scholarly publications publicly available through the National Institute of Health’s PubMed central (PMC). We have an existing interagency agreement (IAA) with PMC that has been and will be renewed yearly to ensure public access to ACL-funded peer-reviewed scholarly publications. PMC has experience in releasing peer-reviewed scholarly publications with no embargo, having provided services to a number of nonfederal funders that employed similar requirements. PMC has indicated that a similar work process can be developed and used for ACL to meet new OSTP requirements as part of PMC’s services provided through the IAA.

Element #2

Indicate how to maximize equitable reach of public access to peer-reviewed scholarly publications, including by providing free online access to peer-reviewed scholarly publications in formats that allow for machine readability and enabling broad accessibility through assistive devices.

Plan to address element #2

PMC employs machine-readability format for peer-reviewed scholarly publications and their contents are accessible through assistive devices, as per the World Wide Web Consortium (W3C) Accessible Rich Internet Applications Recommendation and Section 508 of the Rehabilitation Act ( see https://ncbi.nlm.nih.gov/pmc/about/accessibility/). Peer-reviewed scholarly publications in PMC can be accessed by the public at no cost to users. ACL will rely on PMC for their continual improvement of accessibility via technical assistance to users and their plan to develop improved guidance for making more submitted content accessible to all.

Element #3

Describe the circumstances or prerequisites needed to make the publications freely and publicly available by default, including any use and reuse rights, and which restrictions including attribution, may apply.

Plan to address element #3

ACL will develop guidance to be included in its updated Public Access Policy, Notices of Funding Opportunity, and grant Terms and Conditions. This language will describe to authors of peer-reviewed scholarly publications that resulted from ACL-funded research, that they must maintain necessary rights to share their final manuscript with the public via PMC. Final manuscript is defined as an author's final manuscript of a peer-reviewed paper accepted for journal publication, including all modifications from the peer-review process. We will also instruct the authors to share their final manuscript with an appropriate level of Creative Commons or equivalent license that will allow the re-use of the publications with appropriate attributions.

Expanding public access to scientific data

Element #4

Scientific data underlying peer-reviewed scholarly publications resulting from federally funded research should be made freely available and publicly accessible by default at the time of publication.

Plan to address element #4

ACL’s current policy does not require sharing a subset of scientific data underlying each scholarly publication. Rather, the current policy requires awardees to share all applicable scientific data sets, regardless of whether they are used to develop peer-reviewed scholarly publications, within 24 months after the award end date.

ACL will revise its public access requirements to require authors of any peer-reviewed scholarly publications resulting from ACL- funded research to publish the underlying scientific data at the time of publication. To align with the FAIR data principles, ACL will add instruction for the authors to deposit the peer-reviewed scholarly publication’s underlying data at the Inter-University Consortium of Political and Social Research (I C P S R) -- ACL’s designated repository. The I C P S R’s characteristics are aligned with the Desirable Characteristics of Data Repositories for Federally Funded Research.

Element #5

Federal agencies are to develop approaches and timelines for sharing other federally funded scientific data that are not associated with peer-reviewed scholarly publications.

Plan to address element #5

ACL’s current policy requires that awardees share applicable scientific data resulting from ACL-funded research in their entirety (all data sets resulted from ACL-funded research), no later than 24 months after the end date of the award. This requirement is not contingent upon whether the data are used to develop peer review scholarly publications.

We plan to continue this requirement, with the addition of the new requirement on immediate sharing of the underlying (subset of) data associated with peer-reviewed scholarly publications, as outlined in element #4. We believe that enabling users to have access to secondary use of full data sets will meaningfully and optimally expand the use of data that would accelerate discoveries and generate new scientific knowledge.

Element #6

Federal agencies should provide guidance to researchers that ensures the digital repository used is aligned, to the extent applicable, with the National Science and Technology Council document entitled “Desirable Characteristics of Data Repositories for Federally Funded Research.”

Plan to address element #6

I C P S R, ACL’s currently designated repository for data sharing, is aligned with the desirable characteristics of data repositories indicated in the NSTC guidance indicated above.

I C P S R provides open and equitable access to all users. I C P S R web pages comply with the U.S. Government’s Section 508 Standards for web-based intranet and internet information and applications, and with the Web Content Accessibility Guidelines 2.0, level AA. (https://www.icpsr.umich.edu/web/pages/datamanagement/policies/access.html)

As per ACL’s current public access policy, researchers may request to use different repositories for data sharing. In doing so, they are required to justify why it is not possible to deposit their data at I C P S R and to provide evidence that the alternate repositories of their choosing have comparable characteristics to I C P S R. I C P S R characteristics were used as a benchmark previously because ACL policy was developed prior to the availability of the NSTC guidance. For our updated policy, ACL will refer to the NSTC document as a reference for researchers to identify alternate data repositories, should they provide acceptable justification of why depositing data at I C P S R is not possible/appropriate.

Element #7

Agency public access plan and policies should clarify that federal researchers must follow federal laws and OMB policies that govern federal agencies’ information management practices and protect certain type of data, to the extent that the scientific data created by, collected by, under the control or direction of, or maintained by the federal researchers is subject to those laws and policies.

Plan to address element #7

Consistent with the definition stated in the 2013 OSTP Memorandum, ACL defined scientific data as “digitally recorded factual material commonly accepted in the scientific community as necessary to validate research findings including data sets used to support scholarly publications. Scientific data do not include laboratory notebooks, preliminary analyses, drafts of scientific papers, plans for future research, peer review reports, communications with colleagues, or physical objects, such as laboratory specimens.” ACL also indicated in the existing policy that, for the purpose of data sharing, the following types of data are excluded from the current data sharing requirements: personally identifiable data; proprietary trade data; and other data whose release is limited by law, regulation, security requirements, or policy.

ACL plans to update its definition of scientific data to align with the definition indicated in the 2022 OSTP Memo, as “recorded factual material commonly accepted in the scientific community as of sufficient quality to validate and replicate research findings. Such scientific data do not include laboratory notebooks, preliminary analyses, case report forms, drafts of scientific papers, plans for future research, peer-reviews, communications with colleagues, or physical objects and materials, such as laboratory specimens, artifacts, or field notes.”

ACL will maintain the exclusion language of “For the purpose of data sharing, the following types of data are excluded from the current data sharing requirements: personally identifiable data; proprietary trade data; and other data whose release is limited by law, regulation, security requirements, or policy.”

We will also add an explicit statement, modeled after NIH language, that “ACL-funded researchers should manage and share data in ways consistent with all applicable federal, Tribal, state, and local laws, regulations, statutes, guidance, and institutional policies.”

In addition, we plan to include specific language for the data sharing exemption given to SBIR awardees (SBIR phase I and II), as they may withhold applicable data for 20 years after the award date as per the Small Business Administration’s Policy Directive (see https://www.sbir.gov/sites/default/files/SBA_SBIR_STTR_POLICY_DIRECTIVE_OCT_2020_0.pdf ).

Element #8

Public access plans should outline the policies that federal agencies will use to establish researcher responsibilities on how federally funded scientific data will be managed and shared, including:

Element #8.1

Details describing any potential legal, privacy, ethical, technical, intellectual property, or security limitations, and/or any other potential restrictions or limitations on data access, use, and disclosure, including those defined in the terms and conditions of funding agreements or awards or that convey from a data use agreement or stipulations of an Institutional Review Board.

Plan to address element 8.1

In the current ACL policy, researchers are allowed to provide a rationale for not sharing some or all of their scientific data as an element of their Data Management Plan (DMP). We expect researchers to provide justification based on any potential legal, privacy, ethical, technical, intellectual property, or security limitations, and/or any other potential restrictions or limitations on data access, use, and disclosure as applicable in their cases. The proposed limitation and rationales submitted by awardees will be reviewed and approved on a case-by-case basis.

As part of the DMP, researchers are also required to describe a plan to address the study participants’ consent process to enable the deidentified data to be shared broadly for future research.

Element #8.2

Describe plans to maximize appropriate sharing of the federally funded scientific data identified in Section 3(a) of this memorandum, such as providing risk-mitigated opportunities for limited data access.

Plan to address element #8.2

Currently, ACL only requires sharing of deidentified data. Should there be a possible need to share data that present higher risks of participants’ identification (even with de-identified data) or other confidentiality risks, I C P S R provides several restricted-use data dissemination options to mitigate such risks. These options include secured download, virtual data enclave, physical data enclave, restricted online analysis, and delayed dissemination (see https://www.icpsr.umich.edu/web/pages/deposit/confidentiality.html) that researchers can use, as appropriate.

Element #8.3

Indicate the specific online digital repository or repositories where the researcher expects to deposit their relevant data, consistent with the federal agency’s guidelines.

Plan to address element #8.3

ACL plans to continue its designation of I C P S R as the preferred repository to deposit both data underlying peer-reviewed scholarly publications and full data sets. I C P S R characteristics are aligned with those indicated in the Desirable Characteristics of Data Repositories for Federally Funded Research.

Element #9

Federal agencies should allow researchers to include reasonable publication costs and costs associated with submission, curation, management of data, and special handling instructions as allowable expenses in all research budgets.

Plan to address element #9

ACL currently allows researchers to include expenses in the grant’s budget related to publication costs as well as costs associated with submission, curation, and management of scientific data. We also instruct researchers to indicate expenses related to data archiving and sharing in their Data Management plan. ACL plans to continue to allow such costs to be included as part of the grant’s budget going forward.

Public Access Plan 2017

BACKGROUND AND PURPOSE

On February 22, 2013, the White House Office of Science Technology and Policy (OSTP) issued a memorandum to the heads of executive departments and agencies entitled “Increasing Access to the Results of Federally Funded Scientific Research” (OSTP Memo or Public Access Memo). In the memorandum, OSTP asks federal agencies with research and development budgets greater than $100 million per year to develop a plan to ensure free public access to federally-funded, peer-reviewed scientific publications and to maximize public access—to the extent feasible and permitted by law—to digital data resulting from federally funded research.

The Administration for Community Living (ACL) is an Operating Division (OPDIV) within the Department of Health and Human Services (HHS), initially established on April 18, 2012, by bringing together the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities. Through budget legislation in subsequent years, Congress moved several programs that serve older adults and people with disabilities from other agencies to ACL, including the State Health Insurance Assistance Program, the Paralysis Resource Center, and the Limb Loss Resource Center. Recently, the 2014 Workforce Innovation and Opportunities Act moved the independent living program, Assistive Technology program, and the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) from the Department of Education to HHS/ACL. The transfer of NIDILRR, which has a current appropriation for research and development of approximately $104 million, necessitated the development of an ACL public access plan (prior to this transfer, ACL did not administer research programs).

NIDILRR’s mission is to generate new knowledge and to promote its effective use to improve the abilities of individuals with disabilities to perform activities of their choice in the community, and to expand society’s capacity to provide full opportunities and accommodations for its citizens with disabilities. NIDILRR achieves this mission by providing for research, development, demonstration, training, technical assistance, and related activities to maximize full integration of individuals with disabilities in society; ensuring the widespread distribution of practical scientific and technological information in usable formats; and promoting the transfer, use, and adoption of rehabilitation technology for individuals with disabilities in a timely manner.

ACL will make available to the public ACL/NIDILRR peer-reviewed scientific publications and data arising from research funded in whole or in part by ACL/NIDILRR, to the extent feasible and permitted by law and available resources.

The ACL Public Access Plan is intended to:

Establish a mechanism for compliance with the OSTP public access policy;
Make published results of ACL/NIDILRR-funded research more readily accessible to the public;
Make scientific data collected through ACL/NIDILRR-funded research more readily accessible to the public; and
Increase the use of research results and scientific data to further advance scientific endeavors and other tangible applications.

ACL has begun implementing its public access to publication component since October 1, 2016. ACL has updated its Public Access Plan to include public access to scientific data component, and will begin implementing the new component October 1, 2017.

Download or view the ACL Public Access Plan in PDF.

PUBLIC ACCESS TO PEER-REVIEWED PUBLICATIONS

a. Definitions

Embargo: An embargo is defined as a period between the date of publication and the date the publication is made publicly available for free.

Final peer-reviewed manuscript: A final peer-reviewed manuscript is defined as an author's final manuscript of a peer-reviewed paper accepted for journal publication, including all modifications from the peer-review process.

Final published article: A final published article is defined as a publisher's authoritative copy of the paper, including all modifications from the publishing peer-review process, copy editing, stylistic edits, and formatting changes.

Peer-reviewed publication: A peer-review publication is defined as a publication describing original scientific research findings that has been peer-reviewed prior to being published in a scientific journal.

Peer-reviewed publication’s metadata: Peer-reviewed publication’s metadata is defined as information that describes a peer-reviewed publication, generally making the publication uniquely identifiable and more easily searchable. Publication metadata often include the publication author(s), publication title, journal title, publication date, publication abstract, and unique identifying numbers or codes.

b. Scope

The ACL requirements for public access to peer-reviewed publications will be applicable to peer-reviewed publications resulting from all research funded by ACL/NIDILRR, regardless of the funding mechanism (e.g., grant, cooperative agreement, contract, other funding mechanism).

The ACL requirements for public access to peer-reviewed publications will also apply to peer-reviewed publications resulting from research jointly supported by ACL/NIDILRR and a partner agency, when the research is administered by ACL/NIDILRR. An exception to these requirements is when the jointly-supported research is administered by a partner agency with a comparable public access policy. In that case, ACL will defer to the partner agency's public access policy for peer-reviewed publications.

ACL employees whose scientific work is published in peer-reviewed journals as part of their assigned duties will be under the scope of this plan.

ACL does not have an intramural research program; therefore, it is not addressed in this plan.

c. Requirements

These public access requirements will be applied prospectively, and not retrospectively.

ACL will use PubMed Central (PMC)—the National Institutes of Health (NIH) digital archive of biomedical and life sciences journal literature, developed and operated by the National Library of Medicine, as its designated peer-reviewed publications repository.

Using PMC service will enable ACL to meet the following objectives:
Ensure that the public can read, download, and analyze in digital form final peer-reviewed manuscripts or final published articles;
Facilitate easy public search, analysis of, and access to peer-reviewed publications directly arising from research funded by the Federal Government;
Ensure full public access to peer-reviewed publications’ metadata, without charge upon first publication, in a data format that ensures interoperability with current and future search technology. The metadata will provide a link to the location where the full text and associated supplemental materials will be made available after the embargo period;
Encourage public-private collaboration to:
- maximize the potential for interoperability between public and private platforms and creative reuse to enhance value to all stakeholders,
- avoid unnecessary duplication of existing mechanisms,
- maximize the impact of the Federal research investment, and
- assist with implementation of the ACL Public Access plan;
Ensure that attribution to authors, journals, and original publishers is maintained; and
Ensure that publications and metadata are stored in an archive that:
- provides for long-term preservation and access to the content without charge,
- uses standards, widely available and, to the extent possible, nonproprietary archival formats for text and associated content,
- provides access for persons with disabilities consistent with Section 508 of the Rehabilitation Act of 1973, and
- enables integration and interoperability with other Federal public access archival solutions and other appropriate archives.

The ACL public access plan requires that all peer-reviewed publications generated from ACL/NIDILRR -funded research be publicly available via PubMed Central (PMC) no later than 12 months after the official publication date. The peer-reviewed publications may be made available in either the final peer-reviewed article or final peer-reviewed manuscript format.

ACL/NIDILRR-funded authors may choose one of the following options to achieve compliance:

When appropriate, publish their work in peer-reviewed journals that currently archive their complete contents in PMC (full participation) with a 12 month or less embargo period. In cases where an author publishes with one of these journals, the publisher will supply the final published article directly to PMC and the author does not need to take any additional action to comply with ACL Public Access Policy.

The complete PMC journal list is available at www.ncbi.nlm.nih.gov/pmc/journals. The “Participation Level” column indicates which journals have a full participation level and the “Free Access” column indicates the journal’s embargo period from the date of publication. To exercise this option, only those listed journals with both a full participation level and the embargo period of 12 months or less will meet the requirements of the ACL Public Access Policy.
Submit final peer-reviewed manuscript to PMC through the National Institutes of Health Manuscript Submission System (NIHMS) http://www.nihms.nih.gov upon acceptance of the manuscript for publication, with the understanding that these manuscripts will be made publicly available no later than 12 months after the official date of publication. The author should address the requirements for PMC deposit with the publisher at the time of acceptance or earlier to ensure compliance with the ACL Public Access Policy.

ACL employees whose work is published in peer-reviewed journals as part of their assigned duties will also be required to make the peer-reviewed publications publicly available through either one of the mechanisms indicated above.

d. Compliance and Evaluation

ACL will establish compliance terms and conditions for grant, cooperative agreement, contract, and other funding mechanisms, to be included in all Funding Opportunity Announcements and Requests for Proposals issued after October 1, 2016. The compliance terms and conditions will also be communicated to all recipients of new awards for grants, cooperative agreements, contracts, and other applicable funding mechanisms.

ACL/NIDILRR-supported investigators will be required to report any peer-reviewed manuscripts that have been accepted for publication in their annual performance reports and final reports, with an indication whether the compliance with the ACL Public Access Policy has been achieved by one of the two methods below:

The manuscript is being published in a journal with PMC’s full-participation status with a 12-month or less embargo period; or
The final peer-reviewed manuscript has been submitted through the National Institutes of Health Manuscript Submission System (NIHMS) with an embargo period of 12 months or less.

Grantee compliance will be monitored by requiring the ACL/NIDILRR-supported investigators to identify the PubMed Central Identification Number (PMCID) for any peer-reviewed publications associated with their grant, cooperative agreement, contract, or other funding mechanism to demonstrate compliance with the ACL Public Access Plan. PMC assigns the PMCID to peer-reviewed publications (final peer-reviewed manuscript and final published article) that are under an embargo period as well as those that are already publicly available through PMC.

The data from the PMC’s funding agency administrative portal showing status of submitted final peer-reviewed manuscripts and final published articles associated with ACL/NIDILRR-funded grants, cooperative agreements, contracts, and other funding mechanisms will also be reviewed at a regular interval. This will enable ACL to monitor compliance and take appropriate action such as prompting investigators who are delayed in completing necessary actions that PMC requires in order to make the peer-review publications available to the public.

Failure to comply with ACL’s public access to publications plan could result in withholding, suspension, or termination of funding for non-competing continuation awards. Before awarding new grants or contracts, ACL will inquire whether prospective awardees are in compliance with the ACL Public Access Policy. Prospective awardees’ failure to comply with ACL’s public access policy could be considered a risk factor in making decision for new awards.

ACL will rely on the HHS petition process for considering requests to shorten the embargo period for publications in a specific field. This process is described in greater detail in the HHS Guiding Principles and Approach for Enhancing Public Access, Appendix A at www.hhs.gov/open/public-access-guiding-principles/index.html#app-a.

Compliance of ACL employees who published in peer-reviewed journals as part of their assigned duties will be monitored through internal clearance and reporting processes.

e. Implementation Timeline

March 1, 2016
Begin to communicate ACL requirements for public access to peer-reviewed publications to ACL stakeholders and solicit input and feedback from stakeholders through ACL website and other appropriate venues.

March 31, 2016
Establish an interagency agreement with NIH establishing PMC as the repository for ACL/NIDILRR-funded peer-reviewed publications.

October 1, 2016
Publish ACL’s requirements for public access to peer-reviewed publications on the HHS Public Access website, ACL website (ACL.gov), and other appropriate venues, and identify point of contact within ACL to respond to questions, comments, or suggestions.

October 1, 2016
Incorporate terms and conditions on compliance with ACL’s requirements for public access to peer-reviewed publications into ACL-sponsored grant, cooperative agreement, contract, and other funding mechanism notices, such as Funding Opportunity Announcements and Requests for Proposals.

October 1, 2016
Communicate terms and conditions on public access to peer-reviewed publications all recipients of new awards for grants, cooperative agreements, contracts, and other applicable funding mechanisms.

October 1, 2017
Review the status of implementation of ACL requirements on public access to peer-reviewed publications and assess compliance.

PUBLIC ACCESS TO SCIENTIFIC DATA

Definitions

Data embargo: A data embargo is defined as a period between the award’s end date and the date the data is made publicly available for free.

Data management plan: A data management plan is defined as a written document describing how researchers will provide for long-term preservation of, and access to, scientific data in digital formats resulting from federally funded research, or explaining why long-term preservation and access cannot be justified.

Dataset metadata: Dataset metadata is defined as information that describes a dataset, generally making the dataset uniquely identifiable and more easily searchable, as well as information that allows a meaningful and appropriate use of the data. Dataset metadata can include, but is not limited to, principal investigator’s name, funding sources, project description, sample and sampling procedures, variables, data collection instruments, interview guide and questions, meaning of data codes, and other relevant information about the dataset that would enable meaningful and appropriate use of the data by researchers other than those who originally collect the data.

Scientific data: Scientific data are defined as digitally recorded factual material commonly accepted in the scientific community as necessary to validate research findings including data sets used to support scholarly publications. Scientific data do not include laboratory notebooks, preliminary analyses, drafts of scientific papers, plans for future research, peer review reports, communications with colleagues, or physical objects, such as laboratory specimens. For the purpose of this public access plan, the following types of data are excluded from the scope of this plan: personally identifiable data; proprietary trade data; and other data whose release is limited by law, regulation, security requirements, or policy.

Scope

The ACL requirements for public access to scientific data will be applicable to all research funded by ACL/NIDILRR, regardless of the funding mechanism (e.g., grant, cooperative agreement, contract, other funding mechanisms). The ACL requirements for public access to scientific data will also apply to research jointly supported by ACL/NIDILRR and a partner agency, when the research is administered by ACL/NIDILRR. An exception to these requirements is when the jointly-supported research is administered by a partner agency with a comparable public access policy. In that case, ACL will defer to the partner agency's public access policy for scientific data.

Scientific data collected by ACL employees as part of their assigned duties will be under the scope of this plan.

ACL does not have an intramural research program; therefore, it is not addressed in this plan.

Requirements

These public access requirements will be applied prospectively, not retrospectively. However, in case of ongoing longitudinal data collection, it may be necessary to make the previously collected data available retrospectively if doing so is essential for the prospectively collected data to be meaningful and useful for future analyses.

The ACL public access plan requires that scientific data generated from ACL/NIDILRR-funded research be publicly available no later than 24 months after an award’s end date. The scientific data must be packaged and stored in such a way that enables retrieval and meaningful use by interested parties at no cost. When an award funds more than one research project or a research project generates more than one type of scientific data, all datasets must be made publicly available. Each dataset must have a Digital Object Identifier (DOI) for future reference and citation.

ACL designates the Interuniversity Consortium for Political and Social Research (ICPSR), a unit within the Institute for Social Research at the University of Michigan that provides data archiving services, as its preferred data repository for scientific data from all ACL/NIDILRR-funded research. The exception to this designation is the archiving of longitudinal scientific data collected through the ACL/NIDILRR-funded Burn Injury, Spinal Cord Injury, and Traumatic Brain Injury Model Systems. For these three specific funding programs, the longitudinal scientific data have been and will continue to be deposited to and made publicly available by the National Statistical and Data Center of each respective model system. The National Statistical and Data Centers have the capacity to function as a data repository and making those data accessible to the public.

ICPSR operates an internationally recognized repository that meets industry standards and accepts both quantitative and qualitative data. ICPSR also has a provision for an embargo period, where the data can be held but not released for up to 24 months from the date of depositing, at the submitter’s request. ICPSR assigns DOIs for datasets that are under an embargo period and those already made publicly available.

ACL/NIDILRR-funded awardees may choose another public repository to deposit their dataset(s), provided that 1) there is a satisfactory justification for why it is not possible to deposit the dataset at ICPSR and 2) the chosen repository is comparable to ICPSR as far as meeting industry standards on data archiving and having an embargo period that will allow the awardee’s compliance with this plan.

ACL/NIDILRR-funded awardees may include a justification for using a different repository in the data management plan submitted as part of the original proposal.

ACL requires that applicants for ACL/NIDILRR grants and cooperative agreements, as well as applicable contracts and other types of award as determined by ACL, submit a data management plan. ACL will review the data management plans of potential awardees for completeness and compliance before releasing the awards.

The data management plan (DMP) must include the following components:

Description of the types and format of data to be collected, and how they will be organized, stored, and preserved.
Description of metadata to be included in the data submission to a repository in order to enable meaningful and useful analysis of the data by users who are not part of the research team.
Indication of whether the awardee will submit the scientific data to ICPSR or another public data repository. If the data are to be submitted to ICPSR, no further justification is required. If another repository is identified, the awardee must provide a justification of how this repository will provide for a long-term preservation of, and public access to, scientific data in digital formats resulting from ACL/NIDILRR funded research at no cost. This justification should include a description of the way in which shared digital data will be discoverable, retrievable, and analyzable through the chosen data repository.
If applicable, explain why data sharing, long-term preservation, and access cannot be justified.
Provide a plan to address the study participants’ consent process to enable the de-identified data to be shared broadly for future research.
Indicate an estimated cost to implement the data management plan. This cost is allowable as part of the award’s direct costs.

ACL is planning to develop an online training module for ACL/NIDILRR awardees on planning for archiving and preservation of data. Awardees will be required to meet the training requirement within the first 3 months of their award start date. The purpose of this training module is to raise awareness of best practices in data preparation and packaging from the onset of data collection to maximize the data’s usability at a later date.

ACL employees who collect scientific data as part of their assigned duties will also be required to deposit the data and make them available through the ICPSR.

ACL may issue additional guidance in specific areas as needed to support the implementation of its public access for scientific data plan.

Compliance and Evaluation

ACL will establish compliance terms and conditions for grant, cooperative agreement, contract, and other funding mechanisms, to be included in all Funding Opportunity Announcements and Requests for Proposals issued after October 1, 2017. The compliance terms and conditions will also be communicated to all recipients of new awards for grants, cooperative agreements, contracts, and other applicable funding mechanisms.

ACL will monitor awardees’ compliance by requiring ACL/NIDILRR-supported investigators to report their submission of the scientific data to ICPSR or an equivalent repository, the date that the data will be release within 24 months after the award’s end date, and the DOIs for all datasets associated with their grant, cooperative agreement, contract, or other types of award. Awardees will be required to report this information in the Final Report for each award.

Failure to comply with ACL’s public access to scientific data plan could affect the decision to issue a new award. Before awarding new grants or contracts, ACL will determine whether prospective awardees are in compliance with the ACL plan for public access to scientific data. If an awardee fails to comply with ACL’s public access policy, ACL may consider this failure to comply as part of the awardee’s history of performance when making decisions about future awards.

Compliance of ACL employees who collect scientific data as part of their assigned duties will be monitored through internal reporting processes.

Implementation Timeline

Ongoing

Begin to communicate ACL requirements for public access to scientific data to ACL stakeholders

April 30, 2017

Submit ACL public access plan for scientific data to HHS Office of Secretary for clearance

June 30, 2017

Publish ACL’s requirements for public access to scientific data on the HHS Public Access website, ACL website (ACL.gov), and other appropriate venues, and identify point of contact within ACL to respond to questions, comments, or suggestions

October 1, 2017

Incorporate terms and conditions on compliance with ACL’s requirements for public access to scientific data into applicable ACL-sponsored grant, cooperative agreement, contract, and other funding mechanism notices, such as Funding Opportunity Announcements and Requests for Proposals

October 1, 2017

Communicate terms and conditions on public access to scientific data to applicable recipients of new awards for grants, cooperative agreements, contracts, and other applicable funding mechanisms.

October 1, 2018

Review the status of implementation of ACL requirements on public access to scientific data and assess compliance

Draft Long-Range Plan for 2018-2023

NIDILRR is developing a new long-range plan for the period 2018-2023. View the draft long-range plan.

Older Americans Act Programs

Older Americans Act guidance

The Older Americans Act of 1965 authorized a number of programs and guiding regulations were developed for implementation. View program instructions that guide programs serving Holocaust survivors, state long-term care ombudsman programs, ACL grants to state and community programs serving older adults, and grants to Indian Tribes and Hawaiian natives.

Guidance on Serving Holocaust Survivors

The 2016 reauthorization of the Older Americans Act included a provision that required the Assistant Secretary for Aging to issue guidance to states (PDF, 358KB) about serving Holocaust survivors, including promising practices for conducting outreach to that population.

State Long-Term Care Ombudsman Program Final Rule and Guidance

The Administration on Aging (AoA) of the Administration for Community Living (ACL) within the Department of Health and Human Services (HHS) issued this final rule on July 1, 2016 in order to implement provisions of the Older Americans Act (the Act) regarding States' Long-Term Care Ombudsman programs (Ombudsman programs). Since its creation in the 1970s, the functions of Long-Term Care Ombudsman program (previously the Nursing Home Ombudsman program) have been delineated in the Act; however, regulations had not been promulgated specifically focused on states' implementation of this program. The rule helps to decrease variation in the interpretation and implementation of these provisions among states and guide adjusting state statutes, regulations, policies, procedures and/or practices in order to operate the Ombudsman program consistent with federal law.

Older Americans Act Regulations (2015), 45 CFR Part 1324 (Title VII)

See the Frequently Asked Questions on the long-term care ombudsman program rule.

Technical Assistance and Resources provided by the National Long-Term Care Ombudsman Resource Center.

Program Instructions, Information Memoranda and other AoA Issuances

Program Guidance for Indian Tribes and Older Hawaiian Natives

Grants for Indian Tribes for Support and Nutrition Services: Older American Act Regulation (1988), 45 CFR Part 1322 (Title VI)

Grants for Supportive and Nutritional Services to Older Hawaiian Natives: Older American Act Regulations (1988), CFR Part 1323 (Title VI)

Guidance for State and Community Programs on Aging

Providing guidance on state plans, coordinating with area agencies, and service requirements and priorities: Older Americans Act Regulations (1988), 45 CFR Part 1321 (Title III)

Person-Centered Planning

Person-Centered Planning Guidance: Section 2402(a) of the Affordable Care Act requires the Secretary to ensure all states receiving federal funds develop service systems that are responsive to the needs and choices of beneficiaries receiving home and community-based long-term services (HCBS), maximize independence and self-direction, provide support coordination to assist with a community-supported life, and achieve a more consistent and coordinated approach to the administration of policies and procedures across public programs providing HCBS. This guidance contains standards on person-centered planning and self-direction of HCBS that should be embedded in all HHS funded HCBS programs as appropriate. The guidance is consistent with the final rule from the Centers for Medicare & Medicaid Services on Medicaid HCBS and meets the requirement in section 2402(a) for a more consistent administration of policies and procedures across programs. This guidance is the Department’s first step in implementing section 2402(a). Read the guidance here.

State Health Insurance Assistance Program (SHIP)

Final Rule for SHIP: On June 3, 2016, The Department of Health and Human Services issued a final regulation that adopts, without change, the interim final rule (IFR) entitled “State Health Insurance Assistance Program (SHIP).” This final rule implements a provision enacted by the Consolidated Appropriations Act of 2014 and reflects the transfer of the State Health Insurance Assistance Program (SHIP) from the Centers for Medicare & Medicaid Services (CMS), in the Department of Health and Human Services (HHS) to the Administration for Community Living (ACL) in HHS. Prior to the interim final rule, prior regulations were issued by CMS under the authority granted by the Omnibus Budget Reconciliation Act of 1990 (OBRA), Section 4360.