Current Grant Cycle

Current Grant Cycle 2017-07-05T07:45:23+00:00

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Request for Proposals

Request for Proposal (RFP) from WITH Foundation (WITH) and the American Academy of Developmental Medicine and Dentistry (AADMD)

Advancing Informed Supported Decision-Making for the I/DD Adult Population. Research, Planning, Design, and Education: A Partnership with Families, Healthcare Providers, Self-Advocates, and other Relevant Professionals with Decision-Making Authority

SUBMISSION DEADLINE:
August 18, 2017
(1 p.m. PDT)

Download the full RFP here (PDF) or view below.
 

Executive Summary
A Funding Opportunity

Background

The WITH Foundation (WITH) and American Academy of Developmental Medicine and Dentistry (AADMD) are partnering in this effort to increase the understanding and implementation of informed Supported Decision-Making for adults with developmental disabilities (I/DD) in healthcare settings. This funding opportunity is intended to promote and improve quality healthcare for adults with I/DD. The mission of WITH is to promote the establishment of comprehensive healthcare for adults with I/DD that is designed to address their unique needs. The mission of AADMD is to improve the quality, outcomes, and value of healthcare for individuals with developmental disabilities and their circle of support.

WITH and AADMD embrace person-centered innovations, strive for culturally competent care*; and advocate for the practice of supported decision-making*. Both organizations want to help people with I/DD, their advocates, healthcare providers, and others navigate today’s complex healthcare environment with increased knowledge about the importance of informed choices.

RFP for Supported Decision-Making—New Funding Opportunity

This is an invitation to research, design and educate people and institutions about the significance and nuances of supported decision-making – in this case, supporting and facilitating people with I/DD on how they can exercise their rights to make decisions about their healthcare.

In a healthcare setting where supported decision-making comes into play, the issue of informed consent needs to be considered. The four tenets of informed consent of the person with I/DD should be addressed in the proposal:

  • Does the individual understand the treatment that is being proposed and the reason for the
    treatment?
  • Does the individual understand the risks and benefits of accepting the proposed treatment?
  • Does the individual understand the risks and benefits of rejecting the proposed treatment?
  • Has the individual had the opportunity to ask questions and receive answers about the proposed treatment in a manner that is understood by the individual?

Families, advocates, and providers sometimes face challenges in understanding the personal rights afforded to people with developmental disabilities as well as how best to support individuals with I/DD in communication strategies that allow the individual’s desires to be known during the supported decision-making process. The goal of this RFP is that these challenges be addressed.

Proposal Elements Required

With such a complex array of challenges – this RFP encourages proposals addressing one, both or a combination of the following focus areas:

  1. Educating and engaging individuals with I/DD, families, advocates, healthcare providers, and others with authority and/or directives on the topic of supported-decision making.
     
    1. Many family members are afraid an individual with I/DD is not capable of making decisions on their own or family members fear the person will be taken advantage of by others.
       
    2. Awareness of the term “environmental bias” should be covered in training materials. This may include a scenario where individuals are predisposed (intentionally or unintentionally) to whatever bias exists from the provider or support network.
       
    3. Advocates or Self-Advocates will benefit from facilitation training and demonstrate effective means of communication so individuals are able to get their actual wishes known. At the core, the educational efforts should be person/client centered.
       
    4. The rights of people with I/DD need to be better understood and acknowledged by all stakeholders.
       
  2. Facilitating effective communication and supported-decision making
    1. Research about the role of effective communication and supported decision-making could focus on questions/topics like:
       
      1. How do we know what is being understood by the individual with minimal verbal or written communication abilities?
         
      2. How do we know what they are thinking or feeling? How can we be sure they are making the decision they want and simply not being guided by another person’s desires? How do we determine the effective use of supported decision-making with someone who is non-speaking or uses sign language and/or assistive technologies such as Augmentative and Alternative Communication devices to communicate?
         
      3. What are the biases stakeholders and providers hold regarding the primacy of verbal communication compared to other forms of communication and cognition that may interfere with their understanding of the individual’s wants and needs?
         
      4. How do we sort out speech/communication from cognition and discern to what extent the individual’s mode of communication is being understood?
         
      5. How do we check assumptions and learn to measure client responses accurately? How can we confirm as accurately as possible the individual’s desires?
         
      6. An applicant may want to consider the different ways of expression to help the overall field better understand the various means of expression. They may want to research what effective expressive communication tools can be used to augment the understanding of the client’s desires.
         
      7. An applicant may want to consider the need to explore, catalogue, and make more available new digital means of communication for individuals who cannot meaningfully or understandably express themselves. (Example: expand upon computerized voice production. If there is such work in progress, UCEDDs should be aware of it and perhaps need to support to these efforts further).
         
      8. An applicant could explore the proper application of supported decision-making in the informed consent process including when use of supported decisionmaking is NOT indicated.
         
  3. A combination of the two areas of focus
     
  4. Additional elements to address in the proposals include:
     
    1. Self-Advocates: All project plans must include partnering with Self-Advocates throughout the grant period. Input and participation from Self-Advocates is required. For the purpose of this RFP, self-advocacy is defined as “speaking up for yourself about the rights and responsibilities in your life.”
       
    2. Cultural competency: Cultural competency should also be emphasized throughout the planning and implementation process to ensure the incorporation of best practices. This would include ethnic, cultural, linguistic, and other ways of understanding and communicating important information to one another. Materials should be available in multiple language formats.
       
    3. Target population: The target population to benefit from this funding opportunity should include adults with I/DD, including young adults 18 to 28 years of age.
       
    4. Target audiences: The target audiences can include, but not limited to 1) self-advocates/advocates; 2) family members/guardians; 3) medical and dental students (including residents); 4) nurses and nurse practitioners; 5) physician assistants; 6) medical assistants; 7) mental health providers; 8) allied health professionals; 9) social workers/case managers; 10) front desk, clerical, and clinical staff; 11) administrators; 12) lawyers; 13) paralegal professionals, and 14) other relevant individuals with caregiving and/or decision-making authority.

Suggested Applicants

  1. University Centers for Excellence in Developmental Disabilities (UCEDD)
  2. Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs
  3. Other Not-for-Profit 501(c)(3) Healthcare Practice or not-for-profit with expertise in delivery of services to IDD population and disability rights organizations.

Budget

A detailed budget will be required. Specifications are outlined in project budget section.

Award of Evidence-based Grant

Grants of up to $50,000 each for 1-year period will be awarded. Please read the information provided on the following pages before submitting your proposal.

 __________________________

TABLE OF CONTENTS:

  1. Overview
  2. Program Description
  3. Program Details
    Eligible Organizations
    Grant Period
    Reporting Requirements
  4. Instructions for Grant Proposals
  5. Project Budget
    Project Budget Explanation
    Project Budget Narrative
  6. Deadlines and Submission Process
    Proposal Deadline
    Submission Process
    Notification and Release of Funds

A. OVERVIEW

The WITH Foundation and AADMD are interested in collaborating to advance the research, planning, design, and education on the topic of supported decision-making available to the I/DD population, advocates, healthcare providers and relevant professionals. Only applicants that include meaningful partnerships with Self-Advocates throughout the process will be considered.

Through this RFP, grants will be awarded to selected applicants to promote supported decision-making. Research topics might include analysis of communication and/or cognition assessments of I/DD; and/or design curriculum and training materials and/or education of a variety of audiences about the value of supported decision-making over a one (1) year period.

An applicant may partner with other entities that have a proven track-record or interest in advancing supported decision-making for the target population. The overall intent of the RFP is to better prepare the I/DD community and those serving this population about supported decision-making practices.

B. PROGRAM DESCRIPTION

Goals and objectives for improving supported decision-making through research, design, and education should be listed (minimum of three).

Questions to consider describing in the proposal: 1) How are you currently addressing supported-decision making?; 2) What are the specifics about the audience (advocates, family/guardian, healthcare professionals, level of training, etc.); 3) What are best practices for evaluating a client’s cognitive and communication levels?; 4) What equipment or tools are proven to be useful or needed during the supported decision-making process?

For research — the most competitive submissions will have conducted a review of existing efforts addressing supported decision-making and consider augmenting this work. This might involve reviewing curricula/current requirements to ensure that promising practices and lessons learned about supported decision-making are incorporated into existing practice. Research can also be used to influence how additional materials and approaches can enhance and be integrated into existing practices. Proposals must include a clearly defined research strategy and evidence of submission for IRB approval (or waiver if an IRB approval is not necessary). The process for designing the curriculum and/or training materials should be addressed in the proposal.

For Education —proposals must include learning goals and objectives. An approximate time commitment for learners in terms of hours should be included. An in depth description of at least one of the curriculum design components listed here should be included:

  1. Teaching Materials – (videos, webinars, articles, textbooks, online training, podcasts, electronic applications, etc.) Of note—the timeline for the creation of these materials must be realistically achievable in a 12 month project term.
  2. Teaching Methodologies – (utilizing evidenced-based practices and input from self-advocates for working with I/DD populations, having people with I/DD co-teach classes, performing home, rotating through a medical, therapeutic, or dental clinic for people with IDD, observe use of telemedicine with the I/DD population, etc.)
  3. Testing/Assessment of Learning – (written or oral tests, physical demonstration, patient feedback, evaluations, etc.)

C. PROGRAM DETAILS

Eligible Organizations

UCEDD and/or LEND programs and other Not-for-Profit 501(c)(3) Healthcare Practice or not-for-profit with expertise in supported decision-making and healthcare delivery are eligible to apply. Proposals submitted as a collaborative project or partnerships among multiple entities are welcome. The role of each entity must be clearly defined in the proposal.

Letters of support are requested offering evidence as to why the applicant is a qualified candidate for this funding opportunity and to outline extent of support by parent university or other entity.

Grant Period

The 1-year grant period is expected to begin by March 1, 2018.

Reporting Requirements

The reporting requirements and deadlines will be clearly stated in the grant agreement. The final report must include a financial accounting and narrative summary describing the outcomes of the grant-funded activities.

D. INSTRUCTIONS FOR GRANT PROPOSALS

Completed proposals must be submitted online at www.withfoundation.org. A federal tax identification number must be entered to begin the online submission process. This will lead to an account sign in page. Access the application by clicking on the “Apply” button in the blue text box on the left of the page. Then proceed by putting required information in the designated field(s). An explanation and space parameters will be defined within fields.

E. PROJECT BUDGET

  • Submit a detailed 1-page budget. The total proposed budget may not exceed the maximum award amount of $50,000 total for the grant period.
  • Project Budget Narrative
  • Budgets should include, but are not limited to, the following line items along with a budget narrative:
    • Personnel
    • Meetings and Events
    • Travel
    • Supplies and Equipment
    • Administrative Support/Indirect Costs (not to exceed 20% of project budget)
    • Other

The budget should have a column that shows the cost of the total project budget by line item and a column for the amount requested from the foundation by line item with corresponding totals at the bottom of each column.

F. DEADLINES AND SUBMISSION PROCESS

  • Proposal Deadline: Proposals must be submitted online by August 18, 2017 by 1p.m. PDT.
  • Submission Process: All proposals must be submitted online via the foundation’s website at www.withfoundation.org.
  • Notifications and Release of Funds: Notice of awards will be announced and released by March 1, 2018. The release of funds will be made contingent upon receipt of grant agreement.

Applicants will receive email notification within three working days that their proposal was received and is complete. For inquiries about the RFP and assistance with the online submission process, please contact grants management staff at info@withfoundation.org.

Questions and answers that may be relevant will be posted on the foundation’s website. Check the website for updated information.

A conference call will be held on Thursday, July 27, 2017 at 2pm ET/11am PDT to answer any questions pertaining to the design of the program and the application. Call in information follows:

Phone Number:
866-951-1151
Passcode Number:
7307522

* Glossary of Terms

Culturally competent care: is defined as care that respects diversity in the patient population and cultural factors that can affect health and healthcare, such as language, communication styles, beliefs, attitudes, and behaviors. Further, it includes other marginalized population groups who may be ethnically and racially similar to a provider but who are at risk for stigmatization or discrimination, are different in other identities, or have differences in healthcare needs that result in health disparities. (Agency for Healthcare Research and Quality, Evidence-based Practice Center Systematic Review Protocol, “Improving Cultural Competence to Reduce Health Disparities for Priority Populations”).

Self-advocacy: means speaking up for yourself about the rights and responsibilities in your life. Refer to this link for further explanation provided by The ARC New Mexico.

Supported decision-making: gives people with disabilities the help they need to make choices about their own lives. These choices could be about where to live, what to do during the day, how to spend money, or when to see a doctor or have a procedure. Everyone needs support to make decisions. People with disabilities may need more or different kinds of supports (austisticadvocacy.org).

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