National Limb Loss Resource Center

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Title
National Limb Loss Resource Center
Opportunity ID
310084
Center
AoD
Primary CFDA Number
93.325
Funding Opportunity Number
HHS-2019-ACL-AOD-LLRC-0314
Funding Instrument Type
Cooperative Agreement
Expected Number of Awards Synopsis
1
Length of Project Periods
60-month project period with five 12-month budget periods
Project Period Expected Duration in Months
60
Eligibility Category
State governments,County governments,City or township governments,Special district governments,Independent school districts,Public and State controlled institutions of higher education,Native American tribal governments (Federally recognized),Public housing authorities/Indian housing authorities,Native American tribal organizations (other than Federally recognized tribal governments),Nonprofits having a 501(c)(3) status with the IRS, other than institutions of higher education,Nonprofits without 501(c)(3) status with the IRS, other than institutions of higher education,Others (see text field entitled "Additional Information on Eligibility" for clarification)
Additional Information on Eligibility
Domestic public or private non-profit entities including state and local governments, Indian tribal governments and organizations (American Indian/Alaskan Native/Native American), faith-based organizations, community-based organizations, hospitals, and institutions of higher education.
Estimated Award Date
Funding Opportunity Description

A. Background & Purpose:
Administration for Community LivingThe Administration for Community Living (ACL) was established in April 2012 to better enable older adults and people with disabilities across their lifespan to fully engage and participate in their communities, make informed decisions, and exercise choice and control with regard to their independence, health, and well-being. ACL exists to help all Americans – including people with disabilities and older adults – live and participate in communities that value their contributions.
Programs operated by ACL have the expectation of community living as their foundation. ACL programs actively seek to create communities where the necessary information, resources, opportunities, services, and supports are available and accessible so that people with and without disabilities, their families, and their support networks can live, learn, work, play, and prosper.
People Living with Limb Loss/Limb DifferenceAn estimated two million persons live with limb loss/limb difference in this country [1], and each year an estimated 185,000 amputations are performed in the U.S. [2]. Research indicates that:

The number of people living with the loss of a limb will increase in the coming decades due to the aging of the population and the associated increase in the incidence of diabetes mellitus and dysvascular disease.

These projected increases underscore the need for effective programs that improve access to prosthetic limbs, assistive devices, and appropriate health and prosthetic services [3].

Limb difference/limb loss occurs far less in children and youth but affects up to an additional ten thousand young people and their families in the U.S. each year. [4] Despite their low incidence, these conditions can have negative, life-long, and life-altering consequences:

Difficulties with typical development, e.g., motor skills;
Needing assistance with daily self-care;
Independent living challenges;
Limitations with certain movements, sports, or activities; and
Lower self-esteem and self-confidence. [5]

Absent effective interventions, such youth will face challenges to their health and wellness, career path employment, financial independence, and other domains throughout life.

People with limb loss/limb difference experience many barriers to successful community (re)integration and full participation in social life. People with limb loss/limb difference perceive a reduction in their participation in recreational activities, satisfaction at work, and feel more impaired in their ability to navigate their communities following the amputation of their limb [6]. Additionally, these persons often report experiencing anxiety and psychological distress, low rates of workforce engagement and participation, environmental barriers, and secondary co-morbidities associated with the amputation of a limb (e.g., back pain, arthritis) [7]. Furthermore, individuals with limb loss report receiving little information about their rehabilitation from their healthcare provider either before or after their amputation [8].
While the main focus of the National Limb Loss Resource Center is not on prevention, a few statistics related to amputation risk are illustrative of the challenge faced by underserved populations. Among nonwhite populations, the risk of amputation has been reported to be two to three times that of non-Hispanic whites. Prevalence estimates show that one in 250 white persons are living with the loss of a limb compared with one in 90 nonwhites. Research indicates that variation in poverty and access to care likely contributes to such disparate rates based on race and ethnicity. Moreover, more than half (57%) of all amputations that occur annually in this country are performed on older persons (age 65 and older) [9].
Individuals with limb loss/limb difference and their families come from diverse backgrounds and circumstances yet face common challenges. Many find accessing accurate, evidence-based, and timely information regarding obtaining appropriate health care and community living services is a daunting task. They are frequently confronted with a bewildering maze of organizations and jargon at a time when they may be in crisis. Not surprisingly, they are often forced to make choices and decisions based on incomplete and inaccurate information about their options. This can lead to harmful results. The lack of current high-quality information makes it difficult for individuals to make informed decisions about both their present and their future well-being, which can result in frustration, inappropriate care or equipment, negative health impacts, and increased costs. These challenges will only become worse as the number of people living with limb loss increases.
The National Limb Loss Resource CenterThrough this funding opportunity announcement, ACL intends to award one cooperative agreement to an organization to operate the National Limb Loss Resource Center. The resource center will ensure the availability of, and access to, the most comprehensive, high-quality information, peer mentoring, and related supports for people of all ages living with limb loss/limb difference, their families, and support networks. Having ready and reliable access to relevant, up-to-date information is essential to enabling people living with limb loss/limb difference to make informed choices about and take the lead in improving their own health, independence, and future.
The purpose of the National Limb Loss Resource Center is to advance community living for people living with limb loss/limb difference and the limb loss/limb difference community through strategies that deploy resources and activities across the following four quality of life focus areas:

Health & Wellness

Career Path Employment

Youth Development & Engagement

Community Living

The National Limb Loss Resource Center will improve the quality of life of persons living with limb loss/limb difference of all ages by:

Increasing the education, information, and supports available and accessible to people living with limb loss/limb difference via a robust website and other means in order to equip them with what they need to lead independent lives.

Partnering with ACL, its network, the health care community, the insurance industry, foundations, and other entities to develop and advance short-, medium-, and long-term strategies that can measurably improve health and wellness; increase the knowledge and effective use of non-addictive pain management treatment; promote the responsible use of opioid medication, including by accessing treatment for opioid use disorder; and reduce health disparities, secondary conditions, unnecessary hospitalization and institutionalization among individuals with limb loss/limb difference of all ages.

Partnering with ACL, its network, career path employers, youth development organizations, centers for independent living, foundations, educational institutions, financial literacy organizations, and other entities to develop and advance short-, medium-, and long-term strategies that can measurably increase the independence, productivity, integration, and inclusion; advance the educational attainment; increase and sustain the career path employment; and enhance the long-term economic well-being and financial independence of individuals with limb loss/limb difference.

Assuring that all its strategies are developed and carried out in a manner that:

Allows for complementary strategies in recognizing and meeting the diverse lifespan needs, abilities, aspirations, and circumstances of individuals with limb loss/limb difference, their families, and their support networks;
Addresses the needs and aspirations of individuals that experience limb loss/limb difference as children, youth, or young adults – whose life experiences are often different from those who lose a limb later in life; and
Addresses the needs and aspirations of individuals from racial and ethnic minority populations who are at significant greater risk for limb loss [10] and also for encountering substantial barriers to accessing care, community living, education, career path employment, and other essential opportunities, services, and supports.

Serving as a translator/disseminator of evidence-informed and evidence-based practices and approaches that persons with limb loss/limb difference and others can employ to measurably advance the aims specified above.

B. Program Activities
To be considered competitive for this funding opportunity announcement, applicants should propose a well-designed set of innovative approaches for equipping individuals living with limb loss/limb difference with the information, tools, skills, and supports they need to lead healthy, independent, and productive lives as contributing members of their families, communities, workplaces, and nation. Applicants should describe how they will carry out activities within seven often overlapping categories:
1. A Resource Center
2. A National Website
3. Outreach and Education
4. Peer Mentoring
5. Youth Engagement
6. Collaboration
7. Performance Assessment
Applicants should describe how they will carry out activities within these seven categories across the following four quality of life focus areas: health & wellness, career path employment, youth development & engagement, and community living.
Applicants should clearly describe their experience and expertise along with the recommended approach and implementation strategies for each of the seven activity categories. Throughout the application, applicants should also describe the experience and active involvement of a wide range of stakeholders and organizational partners, including people living with limb loss/limb difference, their families and support networks, centers for independent living, hospitals, employers, rehabilitation facilities, researchers, national and community organizations, providers, and others to fully achieve the desired outcomes.

1. A Resource Center:
The grantee will continually expand the resources and tools available to individuals and families looking for information about living well with limb loss/limb difference. The grantee will also provide real time access to information specialists and subject matter experts. ACL intends that the National Limb Loss Resource Center will be a trusted, nationally recognized entity that individuals with limb loss/limb difference, their families, and their support networks can rely on for the best, most up-to-date information and resources.
Applicants should describe how they will serve as a translator/disseminator of evidence-informed and evidence-based practices and approaches that persons with limb loss/limb difference and others can employ to measurably advance the aims specified in this funding opportunity announcement. Applicants should describe how they will gather, translate, organize, and make publicly available readily accessible, high-quality information and resources that can improve the quality of life for people living with limb loss/limb difference including information and resources relevant to each of the four quality of life focus areas mentioned above. Applicants should describe how they will make information, resources, and assistance available real time through specialized information and referral services.
Applicants should describe how the information, resources, and services available will cover a range of topics such as:

assistive technology, including prosthetics;
evidence-based interventions to prevent secondary conditions, including pain management;
services that support improved health and community living;
recovery and rehabilitation expectations;
social, emotional, and financial support;
community-based educational and recreational opportunities and experiences; and
strategies and approaches for addressing the challenges to and opportunities for employment.

Applicants should also describe how they will measure the impact of the resource center activities on engaged individuals living with limb loss/limb difference, their families, and their support networks.

2. A National Website:
The grantee will operate and maintain a robust national website containing these resources. ACL believes strongly that individuals with limb loss/limb difference, their families, and their support networks should have a website where they can find a wide array of helpful information specific to their situation at any time.
Applicants should demonstrate in their applications that they have experience creating a national website and a strong social media presence within the limb loss/limb difference community. Applicants should describe how they will maintain and expand a National Limb Loss Resource Center website that will provide the public with the information and resources described in this funding opportunity announcement. Applicants should describe how the website and the resources they will develop as the grantee will be branded so that it is clear to the public and others that they were developed with the support of ACL and that ACL and the grantee have entered into a cooperative agreement. Applicants should describe how they will work with the ACL project officer and ACL’s Office of Information Resources Management to ensure that the National Limb Loss Resource Center website and the resources therein are separate and distinct from the grantee’s organizational website; that the website complies with all relevant security and privacy regulations governing federally supported websites; and that it is fully accessible to people with disabilities.
Applicants should also describe how they will measure the impact of the website and any social media activities on engaged individuals living with limb loss/limb difference, their families, and their support networks.

3. Outreach and Education:
The grantee will provide and widely promote educational opportunities and outreach activities for people living with limb loss/limb differences, their families, and their support networks regardless of age, race, ethnicity, disability, location, gender, or sexual orientation. The grantee will work to maximize the potential of these opportunities and activities to improve the quality of life for such individuals.
Applicants will describe how they plan to develop and carry out a marketing plan to increase awareness and usage of the National Limb Loss Resource Center among professionals in the field of limb loss/limb difference, individuals living with limb loss/limb difference, their families, their support networks, disability and aging networks, other community-based organizations, and the general public.
Applicants will describe how they will ensure the marketing plan and its implementation includes a strategy to promote and market the National Limb Loss Resource Center to individuals with congenital limb difference and other traditionally underserved populations including individuals with diabetic ulcers and/or related limb loss; individuals with combat injuries; families coping with newly acquired amputations; caregivers of color; racial and ethnic minority populations; limited-English proficient communities; people living in rural areas; and lesbian, gay, bisexual and transgender older adults and caregivers.
Applicants should describe how they will conduct outreach and education in a manner that improves the quality of life of people living with limb loss/limb difference, their families, and their support networks through a variety of activities including:

Hosting an annual conference with content and structure designed to enhance the quality of life for people living with limb loss/limb difference and their families;

Identifying opportunities and submitting proposals for presentations at national or local meetings/conferences for disability and aging services professionals, relevant to the specific goals/outcomes of the project; and

Identifying opportunities and submitting proposals for presentations to ACL-funded programs and at national or local meetings/conferences for people living with limb loss/limb difference and other related conditions.

Applicants should also describe how they will measure the impact of their outreach and education activities on engaged individuals living with limb loss/limb difference, their families, and their support networks.

4. Peer Mentoring:
The grantee will facilitate peer mentoring to provide support, information, and resources to encourage and empower new amputees and persons transitioning through the various stages of living with limb loss/limb difference. Finding the right supports and resources can be challenging to individuals and their families. Peer mentoring has demonstrated positive outcomes and provides the most direct and beneficial way to assist those living with limb loss/limb difference, their families, and their support networks. The assistance and guidance from someone who also has limb loss/limb difference along with shared similar experiences does much to encourage and empower individuals.
Applicants should propose how they will structure and operate a peer mentoring program to provide support, information, and resources to those living with limb loss/limb difference, their family members, and support networks nationally. Applicants should also describe how they will measure the impact of the peer program on both the peer mentors and those living with limb loss/limb difference, their families, and their support networks.

5. Youth Engagement:
The grantee will engage directly with children and youth with limb loss/limb differences to aid their development and maximize their independence.
Applicants should describe how they will work with children and youth with limb loss/limb differences in an interactive manner in which the participants can learn more about living with limb loss/limb difference from people who have similar lived experience. All children and youth learn from their role models, and the opportunity for children and youth with limb loss/limb difference to learn about, meet, and learn from successful, employed individuals living with limb loss/limb difference is invaluable.
Applicants should propose strategies that can maximize independence, improve decision making, and increase the resilience of such young people in a measurable way through a range of educational opportunities such as adapted sports, community service, apprenticeship, and other life experiences and opportunities.
Applicants should also propose strategies that can be used to enable such young people to connect with and learn from each other as well as help shape the National Limb Loss Resource Center’s efforts on this front.
Applicants should describe how they will measure the impact of their youth engagement activities on participating young people living with limb loss/limb difference, their families, and their support networks.

6. Collaboration:
In order to maximize the reach of the National Limb Loss Resource Center and help more people seeking information, opportunities, services, and supports related to living well with limb loss/limb difference, collaboration and partnership are essential.
Applicants should describe their experience and history of collaboration on behalf of people with limb loss/limb difference. Applicants should describe how they plan to collaborate with ACL and other federal agencies, other national organizations, career path employers, foundations, as well as youth development, independent living, education, financial literacy, health promotion, work force, and other entities. Applicants should demonstrate how these collaborative efforts will be valuable as they develop and implement short-, medium-, and long-term strategies for addressing the needs of the limb loss/limb difference community.
Applicants should describe how proposed collaborative activities will enhance the development, dissemination, and application of evidence-based practices, policies, and approaches. Applicants should also propose how they will work with other ACL resource centers, researchers, and practitioners from across the public and private sectors to collect, synthesize, disseminate, and stimulate research in the field of amputation/limb differences. Additionally applicants should describe how they will work with ACL to identify gaps in research.
Applications should include a letter of support from each identified partner organization, if appropriate, that outlines their role in the project.
Applicants should describe how they will measure the impact of the collaboration activities on individuals living with limb loss/limb difference, their families, and their support networks.

7. Performance Assessment:
The purpose of the National Limb Loss Resource Center is to improve the quality of life of persons living with limb loss/limb difference, their families, and their support networks. Applicants should include in their applications a draft five-year performance assessment plan that operationalizes this purpose in a measurable way. The plan should enable the National Limb Loss Resource Center to reasonably demonstrate and measure the value it brings to the lives of the people it serves across the four quality of life focus areas: health & wellness, career path employment, youth development & engagement, and community living.
Applicants should include short-, medium-, and long-term outcome indicators in the draft performance assessment plan. Applicants should propose strategies focused on realizing SMART goals – i.e., those that are specific, measurable, achievable, relevant, and timely – in each of the four quality of life focus areas.
Applicants should describe how they will work with ACL within the first six months of the grant period to build out their draft plan and fully develop a strong performance assessment plan for the five-year project.
Applicants should propose how they will collect information to document and describe outputs and outcomes for all activities described in this funding opportunity announcement. Applications should include a brief description of expected sources for output and outcome data and methods for data collection (e.g., surveys of consumers, reviews of administrative records). Applicants should describe the role to be played by any partners in designing, developing, or implementing the performance assessment plan.

** Health & Wellness – Specific Goals **
The National Limb Loss Resource Center will measurably improve the health and wellness of persons living with limb loss/limb difference along with improving their knowledge, self-efficacy, resilience, and capability to lead healthy lives. This includes:

Accessing and using evidence-based treatment, prosthetics, and assistive technology services and devices;

Effectively seeking out and using non-addictive pain management methods, treatments, and techniques;

Responsibly using medically necessary opioid medication and accessing treatment for opioid use disorder when needed; and

Recognizing and reducing their risk of secondary conditions, unnecessary hospitalization, and institutionalization.

The resource center will expand access to the existing knowledge base of proven, successful health promotion strategies leading to measurably improved physical and emotional health for this population via online resources and in person trainings.
The resource center will increase collaboration with federal and national organizations that have a vested interest in the limb loss/limb difference community that can further the state of research for people living with amputations and limb difference. The resource center will undertake strategies that will increase the usage of the resources of the National Limb Loss Resource Center among professionals and researcher in the field of limb loss/limb difference to increase the number of short-, medium-, and long-term strategies being implemented to address the health and wellness of people living with limb loss/limb difference.

** Career Path Employment – Specific Goals **
The National Limb Loss Resource Center will measurably increase the independence, productivity, integration, and inclusion of people with limb loss/limb difference by undertaking strategies that will increase educational and career path employment opportunities and outcomes for such individuals. It may do this, for example, by partnering with employers and others to expand apprenticeship, internship, and career path employment opportunities in a manner that expands employment opportunities, eliminates barriers, and creates full access to work for individuals. Other examples:

Developing materials and activities that educate children and youth as well as their parents on how adults with limb loss/limb difference are succeeding in the workplace and in life.

Partnering with employers, colleges, and others to create and utilize career training and opportunities for full-time employment for workers who have lost limbs.

Linking up individuals with limb loss/limb difference with state rehabilitation agencies, American Jobs Centers, Ticket to Work Employment Networks, work incentives planning projects, and other similar resources.

Educating individuals, prosthetics professionals, employers, and others on the importance of and ways to assure someone’s prosthesis facilitates their successful career path employment.

Educating such individuals on their rights, roles, and responsibilities with respect to obtaining and retaining employment as a person with a disability.

** Youth Development & Engagement – Specific Goals **
Children and youth with limb loss/limb difference have life experiences that are often drastically different from those of people who lose a limb later in life. The National Limb Loss Resource Center will measurably increase the independence, productivity, integration, and inclusion of such children and youth by addressing their needs and aspirations. This can be done, for example, through mentoring and encouraging them to excel in school, college, sports, employment, recreation, and all aspects of life.
The resource center will engage children and youth living with limb loss/limb difference in meaningful ways that enable them to connect with and learn from one another and develop and strengthen their peer/social networks. The resource center will also empower such children and youth and create opportunities for them to help shape the activities and the direction of the National Limb Loss Resource Center itself by, for example, establishing one or more youth representative positions on the national board and/or establishing a national youth advisory committee.

** Community Living – Specific Goals **
The National Limb Loss Resource Center will enhance community living opportunities that measurably increase the independence, integration, and inclusion of persons living with limb loss/limb difference, their families, and their support networks by undertaking strategies that will ultimately lead to:

Increased opportunities for and access to independent living services and supports, community engagement, and recreation; and

Removed/reduced environmental, social, systems, and other barriers to health and wellness, increased independence, productivity, integration, inclusion, and community living.

The resource center will measurably improve the knowledge, self-efficacy, resilience, and capability of such persons to enable them to:

Develop and strengthen their peer/social networks;

Identify and access community living services and other needed supports;

Acquire strong self-advocacy skills; and

Develop and employ lifespan strategies that they can use to develop and strengthen their financial independence including, for example, through the use of ABLE accounts.

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[1] Ziegler-Graham K, MacKenzie EJ, Ephraim PL, Travison TG, Brookmeyer R. Estimating the prevalence of limb loss in the United States: 2005 to 2050. Arch Phys Med Rehabil2008 Mar;89 (3):422-9. https://www.archives-pmr.org/article/S0003-9993(07)01748-0/fulltext
[2] Adams P, GE H, Marano M. Current Estimates from the National Health Interview Survey, 1996. Vital Health Stat1999;200(10).
[3] Ziegler-Graham.
[4] Le, Joan T. et al. Pediatric Limb Differences and Amputations, Physical Medicine and Rehabilitation Clinics , Volume 26 , Issue 1 , 95 – 108, https://www.pmr.theclinics.com/article/S1047-9651(14)00103-X/fulltext
[5] CDC, Facts about Upper and Lower Limb Reduction Defects, https://www.cdc.gov/ncbddd/birthdefects/ul-limbreductiondefects.html, Page last updated April 20, 2018 accessed 11/23/18
[6] Ziegler-Graham.
[7] Mckechnie PS, John A. Anxiety and depression following traumatic limb amputation: a systematic review. Injury. 2014 Dec;45(12):1859-66. doi: 10.1016/j.injury.2014.09.015. Epub 2014 Sep 28. Review. PubMed PMID: 25294119.
[8] Darnall BD, Ephraim P, Wegener ST, Dillingham T, Pezzin L, Rossbach P, MacKenzie EJ. Depressive symptoms and mental health service utilization among persons with limb loss: results of a national survey. Arch Phys Med Rehabil2005 Apr;86(4):6508.
[9] Ziegler-Graham.
[10] Ibid.

Award Ceiling
3400000
Award Floor
3200000
Due Date for Applications

Last modified on 07/23/2019


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