Projects of National Significance: Empowering Youth with Intellectual and Developmental Disabilities to Manage Their Healthcare Transitions

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Title
Projects of National Significance: Empowering Youth with Intellectual and Developmental Disabilities to Manage Their Healthcare Transitions
Opportunity ID
332412
Center
AoD
Primary CFDA Number
93.631
Funding Opportunity Number
HHS-2021-ACL-AOD-DNCE-0100
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
Additional Information on Eligibility
The Developmental Disabilities Act of 2000 states that awards can be made "to public or private nonprofit entities for projects of national significance relating to individuals with developmental disabilities."
Foreign entities are not eligible to compete for, or receive, awards made under this announcement. Faith-based and community organizations that meet the eligibility requirements are eligible to receive awards under this funding opportunity announcement.
Estimated Award Date
Funding Opportunity Description

A. Purpose
The Administration for Community Living (ACL) seeks to fund one (1) five-year grant to create and maintain a national, person-centered, culturally competent resource center to empower youth with intellectual and developmental disabilities (ID/DD) in directing their own healthcare transitions from pediatric to adult models of care. The center will work to increase self-determination, independence, and quality of life for youth with ID/DD as they transition into adult models of care. The center will focus on resources for youth, approximately ages 12-26, while also providing resources for families, guardians, and other support networks.

The resource center will be guided by principles of independent living, self-determination, and intersectionality. (These definitions are included at the end of Section I.) Partnerships with entities supporting traditionally unserved and underserved youth, including youth from racially and ethnically diverse populations, youth who use augmentative and alternative communication, and youth who are disconnected from ongoing supports and systems (such as youth transitioning out of the juvenile justice or foster care systems) are critical to the success of this project.

B. Background
Healthcare transition is “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” [1] Every year, 750,000 young people with disabilities enter adulthood but healthcare delivery for these young adults has not kept pace.[2] As a result, the amount of healthcare provided to adults with disabilities by pediatric providers and pediatric models of care is far too great.[3]

There are additional factors for youth and young adults with intellectual and developmental disabilities (ID/DD) who may need more in-depth support to make these transitions. Youth with ID/DD may have difficulty locating appropriate healthcare providers, and benefits programs supporting these youth may be subject to age cut-offs. Additionally, youth with ID/DD may be unaware of their rights and responsibilities that govern their access to healthcare.

The American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians-American Society of Internal Medicine have stated that, “[a]fter the age of majority, all youth deserve to be treated as adults and to experience an adult model of care,” even when they require decision-making support or are under legal guardianship.[4] This project aims to facilitate this process by empowering youth with ID/DD to direct their own healthcare transitions.

This project will complement a number of the AoD initiatives aimed at reducing health disparities as well as projects empowering youth:

The Alternatives to Guardianship Youth Resource Center at University of Massachusetts, Boston;
The Partnering to Transform Health Outcomes with Persons with Intellectual Disabilities and Developmental Disabilities (PATH-PWIDD) at Rush University, College of Nursing; and
The Center for Dignity in Healthcare for People with Disabilities at the University of Cincinnati Center for Excellence in Developmental Disabilities; and
AoD’s ID/DD data equity initiative

This project will be a critical activity as part of AoD’s strategic priority to promote health equity of individuals with disabilities. It will also support the Administration’s priorities to address the COVID-19 pandemic, racial inequities, and the American economy by building back better. ACL recognizes that a leading contributor to racial inequities and health disparities for individuals with ID/DD is lack of access to health care.

This project is funded under the Projects of National Significance (PNS) within the Developmental Disabilities Assistance and Bill of Rights Act, which defines the purpose of PNS as a program to "create opportunities for individuals with developmental disabilities to directly and fully contribute to, and participate in, all facets of community life; and support the development of national and State policies that reinforce and promote, with the support of families, guardians, advocates, and communities, of individuals with developmental disabilities, the self-determination, independence, productivity, and integration and inclusion in all facets of community life of such individuals."[5]

C. Program Goals
As a result of this project, ACL envisions the following long-term outcomes:

Increased self-determination, independence, and quality of life for youth with ID/DD;
Increased access for youth with ID/DD to culturally competent, person-centered healthcare services and supports; and,
Increased collaboration across AoD health equity programs and national resource centers, to share best practices and connect the constellation of ACL health equity investments to improve overall quality of life for people with ID/DD. Some of these initiatives include:

The Alternatives to Guardianship initiative at University of Massachusetts, Boston;
The Partnering to Transform Health Outcomes with Persons with Intellectual Disabilities and Developmental Disabilities (PATH-PWIDD) at Rush University, College of Nursing;
The Center for Dignity in Healthcare for People with Disabilities at the University of Cincinnati Center for Excellence in Developmental Disabilities; and
AoD’s ID/DD data equity initiative.

ACL also anticipates the following shorter-term outcomes:

Youth with ID/DD gain an understanding of their legal rights and responsibilities in a healthcare setting;
Youth with ID/DD understand and learn how to proactively plan for medical appointments and procedures;
Youth with ID/DD learn to lead their medical appointments and interaction with medical professionals;
Youth become more comfortable engaging with medical professionals;
Youth with ID/DD learn about the co-occurring health conditions they may experience;
Youth learn to lead their at-home healthcare routines such as medication management;
Youth with ID/DD make decisions about their healthcare and wellness next steps, in consultation with providers, family members, and adult guardians as appropriate; and
Family members and adult guardians learn how to effectively support youth in transition to adult providers.

D. Activities
Applicants should respond to this funding announcement by submitting proposals that demonstrate the approach they will take, if funded, to create and maintain a national, person-centered, culturally competent resource center to empower youth with ID/DD in directing their own healthcare transitions from pediatric to adult models of care. Applicants should explain how they plan to implement the required activities outlined in this subsection below along with any other activities they deem necessary to achieve the outcomes listed in Subsection C above.

Landscape Analysis
The grantee will perform a landscape analysis of existing efforts across the country that will include identifying current and persistent gaps in services and supports, with particular attention to unserved and underserved populations. This analysis will help inform the subsequent program activities and training and resource topics, as well as provide an opportunity to develop partnerships. Applicants should describe their process for undertaking the landscape analysis and identify how they will include multiple and diverse perspectives in the process. Applicants should also describe how youth with ID/DD will be included in this process.

Resource Development and Dissemination
Applicants should describe how they will use the information generated from the landscape analysis to identify and develop a variety of multi-modal resources for youth with ID/DD as well as for their family members and support networks. Applicants should describe how they will ensure that the resources will be cognitively accessible, culturally competent, and evidence-informed. Applicants should identify a sampling of potential resources and describe a dissemination plan for these resources, including dissemination to youth who may be traditionally underserved, including youth from racially and ethnically diverse populations, youth who use augmentative and alternative communication, and youth who are disconnected from ongoing supports and systems (such as youth transitioning out of the juvenile justice or foster care systems).

Steering Committee
The grantee will develop a steering committee comprised entirely of transition-aged youth with ID/DD. Applicants should describe their plan for developing this steering committee and ensuring the group is diverse with regard to race, religion, ethnicity, disability, gender, gender identity, sexual orientation, location, and other factors not listed. This group will meet regularly to inform the project’s workplan and activities, and applicants should ensure they budget appropriately for every youth to fully participate in these meetings, including the cost of reasonable accommodations, virtual meeting platforms, and potentially stipends for the young adults’ time. Applicants should describe how they will recruit, support, and engage with the steering committee.

Community of Practice
The grantee will develop a community of practice (CoP) comprised of ACL network organizations (e.g., Centers for Independent Living, State Councils on Developmental Disabilities , University Centers for Excellence in Developmental Disabilities, Protection and Advocacy agencies), state agencies, healthcare professionals, and other organizations including any self-advocacy and youth-led organizations within the state. Applicants should describe how they will develop the CoP and provide targeted technical assistance to the CoP through an accessible virtual platform not less than quarterly. Applicants should describe how they will ensure this group is diverse with regard to race, religion, ethnicity, disability, gender, gender identity, sexual orientation, location, and other factors not listed. Applicants should describe how they will recruit, structure, and engage with the community of practice.

Collaboration with ACL National Resource Centers
In order to facilitate coordination of ACL health equity initiatives and maximize health outcomes for youth with ID/DD, the grantee will regularly convene a meeting of related ACL national resource centers, including, but not limited to

The Alternatives to Guardianship initiative at University of Massachusetts, Boston;
The Partnering to Transform Health Outcomes with Persons with Intellectual Disabilities and Developmental Disabilities (PATH-PWIDD) at Rush University, College of Nursing;
The Center for Dignity in Healthcare for People with Disabilities at the University of Cincinnati Center for Excellence in Developmental Disabilities; and
AoD’s ID/DD data equity initiative

Applicants should describe how they will collaborate with this group to maximize the flow of information and the sharing of promising practices and challenges among programs.

Other Partnerships
ACL expects that no one single organization will be able to completely fulfill the priority areas addressed in this project. Therefore, applicants should describe how they plan to partner with other organizations, particularly those representing the needs of traditionally unserved and underserved youth, including youth from racially and ethnically diverse populations, youth with disabilities with intersectional identities, youth who use augmentative and alternative communication, and youth who are disconnected from ongoing supports and systems (such as youth transitioning out of the juvenile justice or foster care systems). While the applicant organization must be the fiscal and programmatic lead, applicants should clearly define their key partners’ roles throughout the application materials (e.g., work plan, budget, project narrative).

Website and Social Media
The grantee will create a robust public facing website on which to host resources created by the grantee as well as relevant resources developed by partners in the field. Applicants should describe how they will create the website and ensure that it and the posted resources will be fully 508-compliant and conform to the Web Content Accessibility Guidelines (WCAG) version 2.1, level AA criteria. The website must also comply with all relevant security and privacy regulations governing federally supported websites. 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. The grantee will also use social media to promote the website and the overall project.

Mobile Application (App)
The grantee will create a downloadable mobile app designed to help youth manage their individual healthcare transitions. Applicants should describe how they will create the app and include features for tracking appointments, medical history, and medication management. The app may also include features for family members or other trusted support networks to assist youth in managing their care. The app must be 508-compliant and conform to the Web Content Accessibility Guidelines (WCAG) version 2.1, level AA criteria. The app must also comply with all relevant security and privacy regulations governing federally supported mobile applications.

Evaluation
Applicants should describe how they will use evidence-based methods for evaluating how well they are achieving the project outcomes. Applicants should describe their approach to evaluation that will be able to successfully measure whether or not the project has achieved its proposed outcomes. Applicants should include qualitative and quantitative methods in their approach.

Applicants should link the evaluation activities to the intended outcomes in Section C Program Goals above.

Sustainability
Through this funding opportunity, ACL expects to realize tangible, measurable, and sustainable advancements for the healthcare transitions of people with intellectual and developmental disabilities. Applicants should propose a range of potential approaches for ensuring the sustainability of project efforts after federal funding has ended.

Independent Living, Self-Determination, and Intersectionality
The success of this project is dependent on all components of the application, in addition to where specifically mentioned, aligning with the principles of independent living, self-determination, and intersectionality.

E. Definitions

Independent Living is a philosophy grounded in consumer control, the idea that people with disabilities are the experts on their own needs and can best decide how to live, work, and participate in their communities.[6]

The Developmental Disabilities Assistance and Bill of Rights Act defines self-determination activities as “activities that result in individuals with developmental disabilities, with appropriate assistance, having:

the ability and opportunity to communicate and make personal decisions;
the ability and opportunity to communicate choices and exercise control over the type and intensity of services, supports, and other assistance the individual receives;
the authority to control resources to obtain needed services, supports, and other assistance;
opportunities to participate in, and contribute to their communities; and
support, including financial support, to advocate for themselves and others, to develop leadership skills, through training in self-advocacy, to participate in coalitions, to educate policymakers, and to play a role in the development of public policies that affect individuals with developmental disabilities.”[7]

Intersectionality is an analytical framework that describes how individual characteristics like race, class, gender identity, disability, sexual preference, and socioeconomic status intersect to have a compounded impact on the individual.[8]

References:
[1] Blum RW, Garrell D, Hodgman C: Transition from child-centered to adult-oriented care: systems for adolescents with chronic health conditions. J Adolesc Health 14:570–576, 1993.
[2] Scal, P., & Ireland, M. (2005). Addressing transition to adult health care for adolescents with special health care needs. Pediatrics, 115: 1607-1612. Retrieved from http://pediatrics.aappublications.org/content/115/6 /1607.full.pdf.
[3] Baghat, Santi K.M. vol. 5, National Collaborative on Workforce and Disability for Youth, 2012, Transition’s Missing Link: Health Care Transition. Retrieved from http://www.ncwd-youth.info/wp-content/uploads/2018/03/policy-brief-05.p….
[4] Crane, Samantha. “The Transition to Adulthood for Youth with ID/DD: A Review of Research, Policy and next Steps .” Policy Brief , Autistic Self Advocacy Network, July 2013, autisticadvocacy.org/wp-content/uploads/2013/12/HealthCareTransition_ASAN_PolicyBrief_r2.pdf.
[5] An Act to Improve Service Systems for Individuals with Developmental Disabilities, and for Other Purposes. (PL 106-442) U.S. G.P.O., 2000.
[6] “About Independent Living.” National Council on Independent Living, 30 May 2019, ncil.org/about/aboutil/.
[7] An Act to Improve Service Systems for Individuals with Developmental Disabilities, and for Other Purposes. (PL 106-442) U.S. G.P.O., 2000.
[8] Crenshaw, Kimberlé (1989) "Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics," University of Chicago Legal Forum: Vol. 1989, Article 8.

Award Ceiling
485000
Award Floor
450000
Due Date for Applications
Date for Informational Conference Call

Last modified on 05/24/2021


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