ACL-Wide Policy and Guidance

Language Access Plan

Download the Microsoft Word Document. 

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 both 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. 

ACL Tribal Consultation Policy

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This policy, released September 2024, highlights the importance of consultation with Indian Tribes which was recognized in Executive Order (EO) 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.

Program 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

FAQs: Conflicts of Interest and Lobbying (2019)

One key element of program oversight is ensuring that grantees know, and understand, grant requirements. These FAQs clarify grant requirements on the issues of lobbying and conflicts of interest.

FAQ: Conflicts of Interest: Word, PDF

As part of the Administration for Community Living’s (ACL) ongoing responsibility to ensure the proper stewardship of federal funds, the above frequently asked questions (FAQs) are intended to help grantees identify and avoid actual or perceived personal conflicts of interest. Per HHS Grant Policy, ACL grantees have an obligation to avoid actual or perceived personal conflicts of interest, including nepotism.

This guidance is intended to help ACL grantees understand when conflicts of interest may be a compliance risk. This FAQ is not a comprehensive guide to every circumstance that could be a violation of a grantee’s obligation to avoid personal conflicts of interest. ACL grantees are responsible for understanding the full scope of their legal responsibilities as federal grantees and are strongly encouraged to reach out to ACL program officers with any questions related to conflicts of interest. For the purposes of these FAQs, a “grantee” includes employees acting on behalf of the grantee, and not in their individual capacity.

For purposes of this FAQ, a “Conflict of Interest” is a significant financial interest that could compromise or bias professional judgement and objectivity related to the management of federal financial assistance. A financial interest in this context means potential for gaining, losing, increasing or decreasing a salary, indebtedness, job offer, or other thing of monetary value. 

FAQ: Allowable Advocacy Activities for Federal Grantees: Word, PDF

The 1973 Rehabilitation Act as Amended (“the Rehab Act as Amended”), requires Centers of Independent Living (CILs) to perform Core Services, including systems advocacy (29 U.S.C §§ 705(17)(D) & 796f-4(b)(5); defined at 45 C.F.R § 1329.4). ACL and ILA have received several requests for guidance describing allowable advocacy activities to help ensure that CILs and other ACL grantees can best serve their target populations and meet their grant obligations without violating federal law.

Federal laws and regulations prohibit federal grantees, which includes recipients of funding related to the Rehab Act as Amended, from using federal funds to lobby government officials (18 U.S.C. § 1913; 31 U.S.C. § 1352; 2 C.F.R § 200.450).

We have provided the FAQs to help clarify how these laws function for ACL grantees. This guidance is intended to help ACL grantees better understand their rights and obligations. It is not a comprehensive guide to every circumstance that could be a violation of the regulations cited above. ACL grantees are responsible for understanding the full scope of their legal responsibilities as federal grantees, and are strongly encouraged to reach out to ACL program officers with any questions about the appropriate use of federal funds.

For the purposes of these FAQs, a “grantee” includes employees; board members; and council members acting on behalf of the grantee, and not in their individual capacity. Grantees should note that they may not act in their individual capacity while they are also operating in an official capacity. (For example, a grantee could not attend a meeting in an official capacity and avoid anti-lobbying regulations by claiming to speak briefly “in their individual capacity” or “in their personal opinion.”)

Disaster Services Policy and FAQ on Part C funding (2018)

Disaster Services Policy: Word, PDF

Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs) are increasingly playing a pivotal role in addressing the often daunting challenges individuals with disabilities and their families face during and following a disaster or other emergency. ACL recognizes the enormous importance of CILs providing inclusive emergency preparedness and disaster response services to the lives, health and independence of individuals with disabilities and their families. Plus, individuals with disabilities and their families need actions and planning before disasters. The Disaster Services Policy is provided as guidance to assist in emergency preparedness and disaster response efforts. 

FAQ on Independent Living Subchapter C Funding Distribution

Introductory Note: Each year the Administration for Community Living (ACL) distributes funding to support the Centers for Independent Living (CIL) program as authorized in the Rehabilitation Act, as amended (the Act), Subchapter C Sec. 721. In response to ongoing questions and concerns regarding how funding to the CILs is determined and more specifically, how the funding formula is applied, the following FAQ is provided as guidance to assist in understanding the distribution of Subchapter C funds.

Q1: What are the steps ACL follows to determine annual Subchapter C grant awards to States?

A1: The Act at Section 721 sets forth the program authorization and steps ACL must take to make available appropriated funds to States as authorized by Subchapter C.

Our first step is determining how much is available for grants and other program activities, including training and technical assistance, Section 21 activities, and program support costs. These costs vary but represent about 3 percent of the appropriations amount for Subchapter C. Once this is done, ACL calculates awards to States as follows:

- Applying a population based formula to determine the allotment to each State whose State plan has been approved;
- Applying minimum allotment amounts of $839,761 to States and $95,139 to territories, as appropriate;
- Applying adjustments for inflation, as appropriate;
- Applying proportional reduction, as appropriate; and
- Applying reallotments, as appropriate.

Under certain conditions, i.e., a competed service area does not receive eligible applicants, a State or Territory’s allotment may be used to increase state allotments for such year.

Q2: What are the steps ACL follows to determine annual Subchapter C grant awards to CILs?

A2: Once the grant awards to States is determined, for grants to CILs in states in which federal funding exceeds state funding (Sec.722), ACL is guided by an order of priorities to the extent funds are available:

Support existing CILs that comply with the standards and assurances set forth in Section 725, at the level of funding for the previous year; Provide a cost of living increase for existing CIL; and Fund new CILs.

Q3: ACL is distributing $12,406 less in Subchapter C funds to CILs on September 30, 2017 than in September 2016. Why is this?

A3: In October 2015, ACL discovered that the IL program had unused ARRA Subchapter C funds from grants awarded in 2010. Those funds expired on September 30, 2015. Some grantees had been told by the Department of Education that the funds would be available for 90 days after the expiration date to reimburse obligations made before that date. Unfortunately, that guidance was not accurate. When the funds expired, they were no longer available to grantees or to ACL. CILs that attempted to draw funds after September 30 to reimburse 2015 expenses were unable to do so. As a result, 19 CILs in 14 states would lose a total of $559,000 if no action was taken.

After careful consideration of the impact to the affected CILs, ACL decided to use current-year funds (FY16) to make up for the shortfall. This reduction in FY16 Subchapter C funding was reflected in the initial allocations that were provided on June 1, 2016.

However, as promised, ACL continued to explore other options to mitigate the impact, and ACL found other resources to offset a significant portion of the shortfall. It was explicitly stated in a “dear colleague” letter last summer however, that this was a one-time event, and that ACL made available resources by waiving the IL program’s share of the costs that would normally be borne by all other ACL programs, including those for program data systems, grants systems, grant review, and the Secretary’s transfer. In addition, because no eligible applicant could be considered for funding a CIL in Guam, the minimum allotment otherwise available to support services in Guam ($95,139) was made available to support existing centers.

When those costs are factored in this year, the result is that the costs are slightly greater in total than the FY16 ARAA amount, resulting in a net of -$12,406 less being available for the Subchapter C grants than we had last year.

Note: These costs may fluctuate from year to year, and as such funding available for grants may vary slightly from year to year.

Q4: Why was the grant awards of some but not all CILs in certain States reduced?

A4: The Subchapter C formula is meant to redistribute funding annually. After the initial distribution was run based on each state/territory’s population percentage, the state/territories who were below the minimum amount had their award amounts increased to the minimum amounts. CILs located within the minimum amount states/territories will also receive the same amounts unless there was a change in the number of CILs within the state/territory.

Q5: How many CILs and States were subjected to these reductions?

A5: Sixteen states had population percentage decreases that resulted in receiving decreased award amounts. One state had population percentage decreases that resulted in receiving decreased award amounts, and 29 states/territories received the minimum award amounts. (See table below for States and Territories in each category).

Q6: Some Subchapter C awards appear to have been reduced in States where population increased or stayed the same. Why?

A6: As a population-based formula, population percentage is factored into the calculation of award amounts. Population percentage is each state/territory’s population figure in comparison to the collective total of all entities. Some states may have seen an increase in their population from the data used in the previous fiscal year. However, when comparing the state/territory’s population to the collective total, the population percentage may not have increased from the previous fiscal year but decreased. This means the percentage of the state population compared to the collective total in FY16 was less than the percentage of the state population compared to the collective total in FY17. The decrease in the population percentages resulted in a reduced award amount for the states and CILs.

Q7: Why didn't ACL take reductions across all Subchapter C awards in respect to the program support costs and Secretary transfer?

A7: After determining how much is available in the aggregate for grant awards, funding for each grant is determined by formula based on statutory and regulatory requirements. Please refer to questions 2 and 3 for more information.

Q8: What factors influenced the reduction to individual grant awards?

A8: As a result of formula driven factors, the total amount for the states receiving increases was $140,461 and the total amount for the states receiving decreases was $152,867. Therefore, the net difference was $12,406.

Q9: What authority does ACL have to use Subchapter C program funds for administrative costs and for the Secretary transfer?

A9: Program support costs including program data systems, grants systems, and grant review costs are allocated to all ACL programs consistent with appropriations language and the budget request. Budget decisions such as the allocation of a Secretarial transfer are made at the program level, not on a grant by grant basis. Specific authority related to the Secretary’s transfer is contained in Section 205 of Division H of the Consolidated Appropriations Act, 2017.

Language in each State’s State Plan for Independent Living (SPIL) sets forth the distribution of State funds to each CIL in the State. Funding formulas set in a SPIL may be Proportionate, Equal or Other. When a State determines a need for SPIL amendments, to include changes to its CIL funding formula, a SPIL amendment must be reviewed and approved by ACL prior to the award continuation process.

 

States received increased funding (both population and population percentage increased)	States received decreased funding (population increased but population percentage decreased)	State received decreased funding (both population and population percentage decreased)	“Minimum” states and territories received level funding
Arizona California Colorado Florida Georgia North Carolina South Carolina Texas Washington	Alabama Indiana Kentucky Louisiana Maryland Massachusetts Michigan Minnesota Missouri New Jersey New York Ohio Pennsylvania Tennessee Virginia Wisconsin	Illinois	Alaska Arkansas Connecticut Delaware District of Columbia Hawaii Idaho Iowa Kansas Maine Mississippi Montana Nebraska Nevada New Hampshire New Mexico North Dakota Oklahoma Oregon Rhode Island South Dakota Utah Vermont West Virginia Wyoming American Samoa Northern Mariana Islands Puerto Rico Virgin Islands

Youth Services FAQ (2017)

May 17, 2017

Dear Colleagues,

ACL is pleased to announce the release of Frequently Asked Questions on Independent Living Services for Children and Youth with Disabilities (Youth Services FAQ), which was developed in response to questions from grantees about the  provisions for transitions of youth  included in the  Workforce Innovation and Opportunity Act of 2014 (WIOA).

WIOA added new “core services” to the missions of centers for independent living that include the transition of youth and young adults with disabilities to postsecondary life once they are no longer receiving a secondary education.  WIOA defines youth with a disability to mean “an individual with a disability who is not younger than 14 years of age; and is not older than 24 years of age.”  ACL adopted this definition in the final IL regulation.

The Youth Services FAQ is intended to help explain this new core service and provide clarification to grantees about reporting of services provided to youth, which may differ depending on their eligibility for the new services or for other independent living services.  We hope it will help centers for independent living design and provide these new core services.  If you have specific questions regarding the implementation or reporting of youth services please contact the ILA project officer for your state.

Thank you, 

Bob Williams

Director, Independent Living Administration

View this letter in PDF format.

Final Rule: Independent Living Programs

The final rule for Independent Living (IL) programs was developed in close coordination with the independent living network and addresses the requirements of the Rehabilitation Act of 1973, as amended by the Workforce Innovation and Opportunity Act (WIOA).

Specifically, the final rule:

Clarifies requirements surrounding WIOA’s addition of new core services to:

• Facilitate the transition of individuals with significant disabilities from nursing homes and other institutions to home and community-based settings
• Provide assistance to individuals with significant disabilities who self-identify as being at risk of entering institutions so that the individuals may remain in the community
• Facilitate the transition of youth with significant disabilities who are no longer in school and no longer receiving services under section 614(d) of IDEA.

The rule became effective November 25, 2016.

Over the coming months, ACL will be working with grantees and stakeholders as needed to answer questions and support CILs and SILCs as they implement the rule. Please send questions to ILFinalRuleFeedback@acl.hhs.gov. These will help us determine needs for additional technical assistance and develop materials to meet them.

Addresses the roles and responsibilities of the State Independent Living Council, as defined by WIOA. For example, the final rule:

• Includes additional details of what must be a part of the SILC Resource Plan to carry out the functions of the SILC
• Addresses the SILC’s authority to conduct resource development activities to support the provision of services by Centers for Independent Living
• Clarifies the expanded role of the SILC in the development of the State Plan for Independent Living.

Clarifies several key definitions. For example:

• “Consumer control” adds specificity to definition in the context of individuals to mean that the person with a disability has control over his or her personal life choices, independent living plan and has the right to make informed choices about content, goals and implementation. Prior to the final rule, “consumer” was sometimes interpreted to include the parents or caregivers of the person with a disability
• “Personal assistance services” is now defined to explicitly include assistance with activities outside of employment, such as social activities and parenting.

For more information, see: Federal Registry Notice

Key Provisions of the Independent Living Final Rule

October 2016

In July 2014, the Workforce Innovation and Opportunity Act (WIOA) was signed into law, transferring the Independent Living programs, the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), and the Assistive Technology programs to ACL, and creating the Independent Living Administration. The transition of these three important programs reflects their strong alignment with ACL’s current efforts and mission—to maximize the independence, well-being, and health of older adults and people with disabilities, and the families and caregivers of both.

In addition to moving IL programs from the Department of Education (ED) to the Department of Health and Human Services (HHS), WIOA also included statutory changes that affect IL programs including the addition of new core services, shifts in the process of developing and adopting state plans and changes in the functions of the SILC.

The final rule for Independent Living (IL) programs was developed in close coordination with the independent living network and addresses the requirements of the Rehabilitation Act of 1973, as amended by the Workforce Innovation and Opportunity Act (WIOA). The rule provides clarification of definitions and processes to reflect the independent living philosophy that is integral to WIOA.

Specifically, the rule:

Provides guidance on the implementation of WIOA’s addition of new “core services,” which specify that all CILs must:

- Facilitate the transition of individuals with significant disabilities from nursing homes and other institutions to home and community-based settings. This includes providing consumer-controlled supports and services and the advocacy needed to move from an institutional setting to community-based setting;

- Provide assistance, services and supports to individuals with significant disabilities who self-identify as being at risk of entering institutions so that the individuals may remain in the community;

- Facilitate the transition of youth with significant disabilities who are no longer in school and no longer receiving services under section 614(d) of IDEA.  < >The focus of this core service is postsecondary transition. If a person is still receiving services under the IDEA, they are not eligible to receive youth transition services under the new core service created by WIOA.Transition services for youth prior to post-secondary life are important in order to prepare youth for a successful transition into adult life. Other services offered to children and youth with disabilities not covered under this core service may be provided under the other IL core services.  CILs should continue to report their work in these areas accordingly. Clarifies the significantly expanded role of SILCs and CILs in developing State Plans for Independent Living. Includes additional details of what must be included in the SILC Resource Plan to carry out the functions of the SILC. The rule says it: “…should include staff/personnel, operating expenses, council compensation and expenses, meeting expenses, including public hearing expenses, such as meeting space, alternate formats, interpreters, and other accommodations, resources to attend and/or secure training for staff and council members, other costs as appropriate. Addresses the SILC’s new authority to conduct resource development activities to support the provision of services by Centers for Independent Living. Resource development activities include annual fund drives and other solicitation of funds from private donors, as well as applying for grants. Clarifies that SILCs are independent from other state agencies.

SILC Indicators of Minimum Compliance and DSE Assurances (2017)

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The Workforce Innovation and Opportunity Act (WIOA) of 2014 requires ACL to develop and publish indicators of minimum compliance for Statewide Independent Living Councils (SILCs).

ILA issued the Statewide Independent Living Council (SILC) indicators and Designated state Entity (DSE) Assurances required by WIOA and assurances applicable to both the SILCs and the Designated State Entities (DSEs) on September 27, 2017. ILA will be consulting with the network to develop a plan on setting effective dates for both the indicators and assurances. Please take the opportunity to review and familiarize yourselves with their contents. The document is the product of extensive discussions and hard work by many in the IL Network, ILRU and my staff. We thank you for your joint efforts.

FY 2017-2019 State Plan for Independent Living (SPIL) Guidance

State Plans for Independent Living (SPILs) show how federal, state, and other funds will be used to support the state’s independent t living programs as well as collaborations with other partners in the state and other ACL grantees to enhance and expand service delivery and options for individuals with disabilities.

The WIOA amended the Rehabilitation Act and resulted in changes to the development of the SPIL. ACL anticipates that once final regulations implementing WIOA have been published, amendments to the 2017-2019 SPILs may be necessary. ACL will provide additional guidance at that time. Questions about the SPIL instrument or submission should be directed to the Independent Living Specialist for one's state.

SILC-NET has developed several SPIL-related resources in coordination with ACL:

- Overview of the changes made to CILs and SILCs in WIOA webinar: http://www.ilru.org/training/workforce-innovation-and-opportunity-act-wioa-and-independent-living-for-silcs

- Publications and on-demand training: http://www.ilru.org/topics/state-plan-for-independent-living-spil

Guidance: ILA PI-15-01 Selection of the Designated State Entity (DSE)

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Issued: June 5, 2015
Revised: October 28, 2015

Legal and Related Authorities: Section 704 of the Rehabilitation Act of 1973, as Amended

Designated State Entity in the Workforce Innovation and Opportunity Act

The Independent Living Administration (ILA) provides the following guidance concerning the Designated State Entity (DSE) based on questions received. As part of the changes to the Rehabilitation Act (Rehab Act or Act) under the Workforce Innovation and Opportunity Act of 2014 (WIOA), the term “designated state entity (DSE)” is the agency that acts on behalf of the State for Title VII Part B programs.

The State Plan for Independent Living (SPIL) must designate the DSE. Under WIOA, the SPIL is jointly developed by the chairperson of the Statewide Independent Living Council and the directors of the Centers for Independent Living in the state, after receiving public input from individuals with disabilities and other stakeholders throughout the state. The SPIL is signed by the chair of the Statewide Independent Living Council (SILC or Council), acting on behalf of and at the direction of the Council and at least 51 percent of the directors of the centers for independent living in the state. The SPIL is also signed by the director of the DSE. By signing the SPIL, the director of the DSE agrees to execute the responsibilities of the DSE identified in the law. The responsibilities are:

- Receive, account for, and disburse funds received by the state based on the SPIL;

- Provide administrative support services for a program under part B, and a program under part C in a case in which the program is administered by the state under section 723;

- Keep such records and afford such access to such records as the Administrator (of ACL) finds to be necessary with respect to the programs;

- Submit such additional information or provide such assurances as the Administrator may require with respect to the programs; and

- Retain not more than 5% of the funds received by the state for any fiscal year under Part B for the performance of the services outlined in paragraphs (1) through (4). See Section 704 (c) of the Rehabilitation Act, as amended, 29 U.S.C. 796c(c).

In order to have an approvable SPIL under the law, all three parties must sign.

All states currently have an approved SPIL that remains effective through fiscal year 2016. The SPIL continues to govern the provision of Independent Living Services in the state. Each state is expected to continue its support, including specified obligations, for an approved SPIL. A SPIL amendment is required when there are significant, material and/or substantive changes to the information in the SPIL. A change in the entity designated to fill the role of the DSE requires a SPIL amendment, as ACL stated in previous Q&As (DOCX).

Under the current law, nothing prohibits the current DSE from being designated to serve as the new DSE. States that are contemplating a change in their DSE must ensure that the new DSE is capable and willing to carry out the legal and fiscal responsibilities of the DSE.

ACL Suggested Best Practices

ACL encourages the following best practices:

- Because the director of the DSE must sign the SPIL to affirm agreement to execute the DSE’s statutory responsibilities, ACL encourages SILCs and CILs to involve the DSE in the SPIL development process.

- Section 704(i) of the Rehabilitation Act requires the SPIL to “set forth the steps that will be taken to maximize the cooperation, coordination, and working relationships among the …” SILC, the CILs, the DSE, and other state agencies that address the needs of specific disability populations. ACL encourages incorporation of involvement of the DSE into the plan.

- ACL encourages states* to involve the current and prospective DSE, Statewide Independent Living Councils and Centers for Independent Living in discussions around the designation of a state entity to receive and administer State Independent Living Services funds.

*“The term ‘State’ includes, in addition to each of the several States of the United States, the District of Columbia, the Commonwealth of Puerto Rico, the United States Virgin Islands, Guam, American Samoa, and the Commonwealth of the Northern Mariana Islands.” —Section 7(34) of the Rehabilitation Act, 29 U.S.C. 705.

State Plan Amendment Process

A change in the DSE can only become effective when it is designated in the SPIL. As noted, a change of the DSE is a substantial and material change that requires an amendment of the SPIL.

Amendments to the SPIL must be submitted by the state to ACL. “To be eligible to receive financial assistance under this part, a State shall submit to the administrator, and obtain approval of, a State plan ….” Section 704(a)(1) of the Rehabilitation Act, as amended, 29 U.S.C. 796c(a)(1). Required steps include:

- SILCs must hold public hearings to solicit input from individuals with disabilities and other stakeholders in the state.

- Amendments must be signed by three parties: the chair of the SILC, acting on behalf of and at the direction of the SILC; not less than 51 percent of the directors of the Centers in the State; and the director of the DSE must sign to affirm their agreement to fulfill all the DSE responsibilities set forth in the law.

Before amending the SPIL, states should send an SPIL amendment request by email to their assigned IL Specialist. The SPIL amendment request should include, at a minimum:

- The section(s) of the SPIL that the state proposes to amend, including both the existing approved language and the proposed amendment(s),

- Anticipated timelines for each step, including public hearings and final submission,

- Whether there will be a change in how funding is made available to the SILC resource plan, SILC placement, and staffing,

- A statement regarding whether the changes fundamentally impact how the State intends to operate its IL programs,

- A citation to or copy of any applicable state law or Executive Order that forms the basis for the proposed SPIL amendment, and

- A statement confirming that the SILC chair, at least 51 percent of the Center directors in the state, and the DSE director will sign the amendment.

All requests and attachments for the SPIL amendment process should be submitted in accessible PDF formats or as Word documents.

ILA encourages states to submit proposed SPIL amendment language for review before seeking stakeholder input through public hearings. Once all appropriate steps have been completed, including the public hearing for a SPIL amendment and the signatures of the appropriate parties, states should contact their assigned IL Specialist for instructions on final processes.

Additional Information

ACL is in the process of developing a proposed regulation to implement the relevant provisions of the Workforce Innovation and Opportunity Act (WIOA) of 2014, and ILA will continue to issue guidance as needed.

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.

• DD Act of 2000 Final Rule (PDF)
• Overview from August 5, 2015 Webinar on DD Act Final Rule (PDF, 211KB)
• Updated Slides from August 5, 2015 Webinar on DD Act Final Rule (PDF, 319KB)

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

On February 6, 2024, ACL released a final rule to update the regulations for implementing its Older Americans Act (OAA) programs. The new regulations took effect on March 15, 2024, but regulated entities have until October 1, 2025 to comply. ACL looks forward to working with partners in the aging network to implement the final rule and will provide robust technical assistance and other resources to support states, tribes and tribal organizations, area agencies on aging, and others in the aging network in meeting its requirements. ACL is currently reviewing the materials referenced in the sections below; some may be superseded by the new rule.

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.