Centers for Independent Living
- 2019 Guidance
One key element of program oversight is ensuring that grantees know, and understand, grant requirements. In the last few months, ACL has issued FAQs to clarify grant requirements on the issues of lobbying and conflicts of interest, and we expect to issue others in the coming year.
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.
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.”)
- 2018 Guidance
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 Policy/Procedure is provided as guidance to assist in emergency preparedness and disaster response efforts.
FAQ on Independent Living Subchapter C Funding Distribution
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
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
- 2017 Guidance
May 17, 2017
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.
Director, Independent Living Administration
- Independent Living Rule
The final rule for Independent Living (IL) programs went on display in the Federal Register. The rule 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
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
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)
Download as PDF
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.
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 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.
- Expanded Public Access Plan 2024
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.
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.
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.
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.
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.
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.
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.
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 ).
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:
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.
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.
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.
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.
PUBLIC ACCESS TO PEER-REVIEWED PUBLICATIONS
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.
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.
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
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.
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.
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.
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 will take 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. The links below provide the full regulations that guide 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.
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 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)
- Overview and Guidance
Assuring Access to Community Living for the Disabled
On June 22, 1999, the U.S. Supreme Court affirmed the policy by ruling in Olmstead v. L.C. that under the Americans With Disabilities Act (ADA) unjustifiable institutionalization of a person with a disability who, with proper support, can live in the community is discrimination. In its ruling, the Court said that institutionalization severely limits the person’s ability to interact with family and friends, to work and to make a life for him or herself.
The Olmstead case was brought by two Georgia women whose disabilities include mental retardation and mental illness. At the time the suit was filed, both plaintiffs were receiving mental health services in state-run institutions, despite the fact that their treatment professionals believed they could be appropriately served in a community-based setting.
In accordance with that Court ruling, the U.S. Department of Health and Human Services (HHS) today issued guidance to state Medicaid directors on how to make state programs responsive to the desires of disabled persons to live in appropriate community-based settings. The Administration’s goal is to integrate people with disabilities into the social mainstream with equal opportunities and the chance to make choices.
The Olmstead Decision
The Court based its ruling in Olmstead on sections of the ADA and federal regulations that require states to administer their services, programs and activities “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”
Under the Court’s ruling, certain principles have emerged:
- unjustified institutionalization of people with disabilities is discrimination and violates the ADA;
- states are required to provide community-based services for persons with disabilities otherwise entitled to institutional services when the state’s treatment professionals reasonably determine that community placement is appropriate; the person does not oppose such placement; and the placement can reasonably be accommodated, taking into account resources available to the state and the needs of others receiving state-supported disability services;
- a person cannot be denied community services just to keep an institution at its full capacity; and,
- there is no requirement under the ADA that community-based services be imposed on people with disabilities who do not desire it.
The Court also said that states are obliged to “make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program or activity.” Meeting the fundamental alteration test takes into account three factors: the cost of providing services in the most integrated setting; the resources available to the state; and how the provision of services affects the ability of the state to meet the needs of others with disabilities.
Olmstead and the Medicaid Program
The Medicaid program can be an important resource to assist states in meeting the principles set out in Olmstead. In its letter/guidance to State Medicaid Directors (see below), the Health Care Financing Administration, which oversees the Medicaid and Medicare programs, reminds states they have an obligation under Medicaid to periodically review the services of all residents in Medicaid-funded institutions.
The letter also reminds states they may chose to utilize their Medicaid funds to provide appropriate services in a range of settings from institutions to fully integrated community support.
HCFA urges states to develop comprehensive working plans to strengthen community service systems and to actively involve people with disabilities and their families in the design, development and implementation of such plans. HCFA also encourages states to take steps to prevent future inappropriate institutionalization of persons with disabilities and to assure the availability of community-based services.
Over the past few years, HHS has focused on expanding and promoting home and community-based services, offering support and technical assistance to states and using the flexibility of the Medicaid program. The Olmstead decision affirms that we are moving in the right direction.
To help states comply with the Court ruling, HCFA and the HHS Office for Civil Rights have begun working with states and the disability community toward the goals of promoting home and community-based services; honoring individual choice in service provision; and acknowledging that resources available to a state are limited by the need to serve both community-based and institutionalized persons.
In addition to continued technical assistance to states, HHS will review relevant federal Medicaid regulations, policies and previous guidance to assure that they are compatible with requirements of the ADA and Olmstead decision and that they facilitate states’ efforts to comply with the law.
Last summer, as most of you are aware, the Supreme Court handed down a major decision about the ADA and home and community-based services and supports. The Administration argued on behalf of the plaintiffs (two Georgia women who wanted to live in their communities) and, on June 22 after the ruling, President Clinton asked for effective implementation of the decision. Below please find the text of a letter and recommendations to State Medicaid Directors about implementing the Olmstead decision. The letter is from HCFA’s Timothy M. Westmoreland, Director of the Center for Medicaid and State Operations, and Thomas Perez, Director of the Office for Civil Rights. Congratulations to them and others at HHS and HCFA for their work on this important issue. I will separately send other documents about HHS and HCFA’s actions.
Letter/guidance to State Medicaid Directors January 14, 2000
Dear State Medicaid Director:
The recent Supreme Court decision in Olmstead v. L. C., 119 S.Ct. 2176 (1999), provides an important legal framework for our mutual efforts to enable individuals with disabilities to live in the most integrated setting appropriate to their needs. The Court’s decision clearly challenges us to develop more opportunities for individuals with disabilities through more accessible systems of cost-effective community-based services.
This decision confirms what this Administration already believes: that no one should have to live in an institution or a nursing home if they can live in the community with the right support. Our goal is to integrate people with disabilities into the social mainstream, promote equality of opportunity and maximize individual choice.
The Department of Health and Human Services (DHHS) is committed to working with all affected parties to craft comprehensive, fiscally responsible solutions that comply with the Americans with Disabilities Act of 1990 (ADA). Although the ADA applies to all State programs, Medicaid programs play a critical role in making community services available. As a consequence, State Medicaid Directors play an important role in helping their States comply with the ADA. This letter conveys our initial approach to Olmstead and outlines a framework for us to respond to the challenge.
The Olmstead Decision
The Olmstead case was brought by two Georgia women whose disabilities include mental retardation and mental illness. At the time the suit was filed, both plaintiffs lived in State-run institutions, despite the fact that their treatment professionals had determined that they could be appropriately served in a community setting. The plaintiffs asserted that continued institutionalization was a violation of their right under the ADA to live in the most integrated setting appropriate. The Olmstead decision interpreted Title II of the ADA and its implementing regulation, which oblige States to administer their services, programs, and activities “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” (28 CFR 35.130(d)). In doing so, the Supreme Court answered the fundamental question of whether it is discrimination to deny people with disabilities services in the most integrated setting appropriate. The Court stated directly that “Unjustified isolation … is properly regarded as discrimination based on disability.” It observed that (a) “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life,” and (b) “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”
Under the Court’s decision, States are required to provide community-based services for persons with disabilities who would otherwise be entitled to institutional services when: (a) the State’s treatment professionals reasonably determine that such placement is appropriate; (b) the affected persons do not oppose such treatment; and (c) the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others who are receiving State-supported disability services. The Court cautioned however, that nothing in the ADA condones termination of institutional settings for persons unable to handle or benefit from community settings. Moreover, the State’s responsibility, once it provides community-based treatment to qualified persons with disabilities, is not unlimited.
Under the ADA, States are obliged to “make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program or activity.” (28 CFR 35.130(b)(7)). The Supreme Court indicated that the test as to whether a modification entails “fundamental alteration” of a program takes into account three factors: the cost of providing services to the individual in the most integrated setting appropriate; the resources available to the State; and how the provision of services affects the ability of the State to meet the needs of others with disabilities. Significantly, the Court suggests that a State could establish compliance with title II of the ADA if it demonstrates that it has:
- a comprehensive, effectively working plan for placing qualified persons with disabilities in less restrictive settings, and
- a waiting list that moves at a reasonable pace not controlled by the State’s endeavors to keep its institutions fully populated.
Olmstead and the Medicaid Program
Olmstead challenges States to prevent and correct inappropriate institutionalization and to review intake and admissions processes to assure that persons with disabilities are served in the most integrated setting appropriate. Medicaid can be an important resource to assist States in meeting these goals. We want to work closely with States to make effective use of Medicaid support in your planning and implementation of Olmstead. As an example of the interface between Olmstead’s explanation of the State’s ADA obligation and your Medicaid program we would point to the State’s responsibility, under Medicaid, to periodically review the services of all residents in Medicaid-funded institutional settings. Those reviews may provide a useful component of the State’s planning for a comprehensive response to Olmstead. States must also be responsive to institutionalized individuals who request that their situation be reviewed to determine if a community setting is appropriate. In such a case the State has a duty to redress the situation, subject to the limits outlined by the Court and the ADA. As another example, States may choose to utilize their Medicaid funds to provide appropriate services in a range of settings from institutions to fully integrated community support.
Comprehensive, Effectively Working Plans
As we have noted, the Supreme Court in Olmstead indicated that a State may be able to meet its obligation under the ADA by demonstrating that it has a comprehensive, effectively working plan for placing qualified persons with disabilities in the most integrated setting appropriate, and a waiting list that moves at a reasonable pace not controlled by a State’s objective of keeping its institutions fully populated. The Department believes that comprehensive, effectively working plans are best achieved with the active involvement of individuals with disabilities and their representatives in design, development and implementation.
The Court’s Olmstead decision regarding the integration requirement applies to all individuals with disabilities protected from discrimination by title II of the ADA. Although Olmstead involved two individuals with mental disabilities, the scope of the ADA is not limited only to such individuals, nor is the scope of Olmstead limited to Medicaid beneficiaries or to services financed by the Medicaid program. In addition, the requirement to provide services in the most integrated setting appropriate applies not only to persons already in institutional settings but to those being assessed for possible institutionalization.
The enclosure to this letter offers some recommendations about key principles and practices for States to consider as they develop plans. We recognize that there is no single plan that is best suited for all States, and accordingly that there are many ways to meet the requirements of the ADA. We certainly hope States and people with disabilities will expand and improve on these ideas. Although these plans encompass more than just the Medicaid program, we realize the important role played by State Medicaid Directors in this area. As just one example, Federal financial participation will be available at the administrative rate to design and administer methods to meet these requirements, subject to the normal condition that the changes must be necessary for the proper and efficient administration of the State’s Medicaid program. Because of your significant role, we have taken this opportunity to raise these issues with you.
The principles and practices contained in the accompanying technical assistance enclosure also serve as an important foundation for the DHHS Office for Civil Rights’ (OCR) activities in this area. As you know, OCR has responsibility for investigating discrimination complaints involving the most integrated setting issue. OCR also has authority to conduct compliance reviews of State programs and has already contacted a number of States to discuss complaints. OCR strongly desires to resolve these complaints through collaboration and cooperation with all interested parties.
Next Steps for the Department of Health and Human Services
Consultation: We have begun consultation with States (including State Medicaid Directors and members of the long term care technical advisory group, who share responsibility for Medicaid) and with people with disabilities. We look forward to building on this start. Many States have made great strides toward enabling individuals with disabilities to live in their communities. There is much that we can learn from these States. We are interested in your ideas regarding the methods by which we might accomplish such continuing consultation effectively and economically.
Addressing Issues and Questions Regarding Olmstead and Medicaid: As we move forward, we recognize that States may have specific issues and questions about the interaction between the ADA and the Medicaid program. In response to the issues and questions we receive, we will review relevant federal Medicaid regulations, policies and previous guidance to assure that they (a) are compatible with the requirements of the ADA and the Olmstead decision, and (b) facilitate States’ efforts to comply with the law.
Technical Assistance: In response to any issues raised by the States, the DHHS working group will develop a plan to provide technical assistance and information sharing among States and stakeholders. Responses to questions and technical assistance materials will be published on a special website. We are also funding projects in a number of States to assist with nursing home transition. Finally, we seek your ideas on the additional forms of technical assistance you would find most helpful for home and community-based services and conferences for State policy makers. We will use your suggestions to facilitate the implementation of the integration requirement. We invite all States and stakeholders to submit questions and recommendations to our departmental workgroup co-chaired by the Director of HCFA’s Center for Medicaid and State Operations and the Director of the DHHS Office for Civil Rights. Please send such written correspondence to:
DHHS Working Group for ADA/Olmstead
c/o Center for Medicaid and State Operations
HCFA, Room S2-14-26, DEHPG
7500 Security Blvd.
Baltimore MD 21244-1850
The Administration and DHHS have a commitment to expanding home and community-based services and offering consumers choices in how services are organized and delivered. Over the past few years, DHHS has focused on expanding and promoting home and community-based services, offering support and technical assistance to States, and using the flexibility of the Medicaid program. The Olmstead decision affirms that we are moving in the right direction and we intend to continue these efforts.
We recognize that this interim guidance leaves many questions unanswered; with your input, we expect to develop further guidance and technical assistance. We recommend that States do the following:
- Develop a comprehensive, effectively working plan (or plans) to strengthen community service systems and serve people with disabilities in the most integrated setting appropriate to their needs;
- Actively involve people with disabilities, and where appropriate, their family members or representatives, in design, development and implementation;
- Use the attached technical assistance material as one of the guides in the planning process;
- Inform us of questions that need resolution and of ideas regarding technical assistance that would be helpful.
We look forward to working with you to improve the nation’s community services system.
Timothy M. Westmoreland
Center for Medicaid and State Operations
Health Care Financing Administration
Office of Civil Rights
All HCFA Regional Administrators
All HCFA Associate Regional Administrators
Division of Medicaid and State Operations
American Public Human Services Association
National Association of State Alcohol and Drug Abuse Directors, Inc.
National Association of State Directors of Developmental Disabilities Services
National Association for State Mental Health Program Directors
National Association of State Units on Aging
National Conference of State Legislatures
National Governors’ Association
Developing Comprehensive, Effectively Working Plans: Initial Technical Assistance Recommendations
In ruling on the case of Olmstead v L.C., the Supreme Court affirmed the right of individuals with disabilities to receive public benefits and services in the most integrated setting appropriate to their needs. The Supreme Court indicated that a State can demonstrate compliance with its ADA obligations by showing that it has a comprehensive, effectively working plan for placing qualified persons with disabilities in less restrictive settings, and a waiting list that moves at a reasonable pace not controlled by the State’s endeavors to keep its institutions fully populated.
We strongly urge States to increase access to community-based services for individuals with disabilities by developing comprehensive, effectively working plans for ensuring compliance with the ADA. There is no single model plan appropriate for all States and situations. In developing their plans, States must take into account their particular circumstances. However, we believe there are some factors that are critically important for States that seek to develop comprehensive, effectively working plans. Our intent in this enclosure is to identify some of the key principles, including the involvement of people with disabilities throughout the planning and implementation process. These principles also will be used by the Office for Civil Rights as it investigates complaints and conducts compliance reviews involving “most integrated setting” issues. We strongly recommend that States factor in these principles and practices as they develop plans tailored to their needs.
Comprehensive, Effectively Working Plans
Principle: Develop and implement a comprehensive, effectively working plan (or plans) for providing services to eligible individuals with disabilities in more integrated, community-based settings. When effectively carrying out this principle:
- The State develops a plan or plans to ensure that people with disabilities are served in the most integrated setting appropriate. It considers the extent to which there are programs that can serve as a framework for the development of an effectively working plan. It also considers the level of awareness and agreement among stakeholders and decision-makers regarding the elements needed to create an effective system, and how this foundation can be strengthened.
- The plan ensures the transition of qualified individuals into community-based settings at a reasonable pace. The State identifies improvements that could be made.
- The plan ensures that individuals with disabilities benefit from assessments to determine how community living might be possible (without limiting consideration to what is currently available in the community). In this process, individuals are provided the opportunity for informed choice.
- The plan evaluates the adequacy with which the State is conducting thorough, objective and periodic reviews of all individuals with disabilities in institutional settings (such as State institutions, ICFs/MR, nursing facilities, psychiatric hospitals, and residential service facilities for children) to determine the extent to which they can and should receive services in a more integrated setting.
- The plan establishes similar procedures to avoid unjustifiable institutionalization in the first place.
Plan Development and Implementation Process
Principle: Provide an opportunity for interested persons, including individuals with disabilities and their representatives, to be integral participants in plan development and follow-up. When effectively carrying out this principle:
- The State involves people with disabilities (and their representatives, where appropriate) in the plan development and implementation process. It considers what methods could be employed to ensure constructive, on-going involvement and dialogue.
- The State assesses what partnerships are needed to ensure that any plan is comprehensive and works effectively.
Assessment on Behalf of Potentially Eligible Populations
Principle: Take steps to prevent or correct current and future unjustified institutionalization of individuals with disabilities. When effectively carrying out this principle:
- The State has a reliable sense of how many individuals with disabilities are currently institutionalized and are eligible for services in community-based settings. The plan considers what information and data collection systems exist to enable the State to make this determination. Where appropriate, the State considers improvements to data collection systems to enable it to plan adequately to meet needs.
- The State evaluates whether existing assessment procedures are adequate to identify institutionalized individuals with disabilities who could benefit from services in a more integrated setting.
- The State also evaluates whether existing assessment procedures are adequate to identify individuals in the community who are at risk of placement in an unnecessarily restrictive setting.
- The plan ensures that the State can act in a timely and effective manner in response to the findings of any assessment process.
Availability of Community-Integrated Services
Principle: Ensure the Availability of Community-Integrated Services. When effectively carrying out this principle:
- The plan identifies what community-based services are available in the State. It assesses the extent to which these programs are able to serve people in the most integrated setting appropriate (as described in the ADA). The State identifies what improvements could be accomplished, including in information systems, to make this an even better system, and how the system might be made comprehensive.
- The plan evaluates whether the identified supports and services meet the needs of persons who are likely to require assistance in order to live in community. It identifies what changes could be made to improve the availability, quality and adequacy of the supports.
- The State evaluates whether its system adequately plans for making supports and services available to assist individuals who reside in their own homes with the presence of other family members. It also considers whether its plan is adequate to address the needs of those without family members or other informal caregivers.
- The State examines how the identified supports and services integrate the individual into the community.
- The State reviews what funding sources are available (both Medicaid and other funding sources) to increase the availability of community-based services. It also considers what efforts are under way to coordinate access to these services. Planners assess the extent to which these funding sources can be organized into a coherent system of long term care which affords people with reasonable, timely access to community-based services.
- Planners also assess how well the current service system works for different groups (e.g. elderly people with disabilities, people with physical disabilities, developmental disabilities, mental illness, HIV-AIDS, etc.). The assessment includes a review of changes that might be desirable to make services a reality in the most integrated setting appropriate for all populations.
- The plan examines the operation of waiting lists, if any. It examines what might be done to ensure that people are able to come off waiting lists and receive needed community services at a reasonable pace.
Principle: Afford individuals with disabilities and their families the opportunity to make informed choices regarding how their needs can best be met in community or institutional settings. When effectively carrying out this principle:
- The plan ensures that individuals who may be eligible to receive services in more integrated community-based settings (and their representatives, where appropriate) are given the opportunity to make informed choices regarding whether -and how- their needs can best be met.
- Planners address what information, education, and referral systems would be useful to ensure that people with disabilities receive the information necessary to make informed choices.
Implications for State and Community Infrastructure
Principle: Take steps to ensure that quality assurance, quality improvement and sound management support implementation of the plan. When effectively carrying out this principle:
- Planners evaluate how quality assurance and quality improvement can be conducted effectively as more people with disabilities live in community settings.
- The State also examines how it can best manage the overall system of health and long term care so that placement in the most integrated setting appropriate becomes the norm. It considers what planning, contracting and management infrastructure might be necessary to achieve this result at the State and the community level.
- 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.