Administration on Disabilities Grant: Promoting Human Dignity and Civil Rights for People with Disabilities

Conduct gap analysis of existing data and research, medical curricula, policies, guidelines, and protocols around medical discrimination issues that exist for the ID/DD population, including in areas such as organ transplants, pre-natal counseling, aging, end of life, mental health referrals, suicide ideation and any others identified by the applicant;

Convene a panel of partners and stakeholders to use findings from gap analysis to develop and validate protocols to support medical professionals treating patients with ID/DD without discrimination; and

Conduct national disseminate of protocols to multiple professionals in the medical and allied health fields to raise awareness of the issue and the resources.

Applicants must address the following components into the project proposal:

Partnerships in the design and implementation of the project: Partnering with local, state, and national level organizations, agencies and other relevant stakeholders, including at least one self-advocacy organization and one family-led organization, to conduct all three project activities. The DD Act defines “advocacy” as an active support of policies and practices that promote self-determination and inclusion in the community and workforce for individuals with ID/DD and their families. Successful applicants will propose a coordinated approach across various partners. A signed Memorandum of Understanding (MOU) between the members of the partnership must be submitted as part of the application. The agreement should describe how the entities participated in the development of the application and more importantly, how they plan to work together to ensure the goals and objectives included in the application are achieved. Applicants should demonstrate support of civil rights across the lifespan for people with disabilities.

Meaningful and active engagement with self-advocates and family members throughout all phases and aspects of this project. In addition to the partnership requirement above, it is expected that self-advocates and family members will be fully engaged throughout the life cycle and in all aspects of this project, including in conducting the gap analysis, developing and testing protocols, and national dissemination efforts. Self-advocates and family members are expected to serve in various roles and capacities in the project.

Meaning and active engagement with the medical community and subject matter experts throughout all phases and aspects of this project. In addition to the partnership requirement above, it is expected that members of the medical community, including the health and allied health professions, will be fully engaged throughout the life cycle and in all aspects of this project. Medical professionals should inform the gap analysis, the development and testing of protocols, and national dissemination efforts. Medical professionals are expected to serve in various roles and capacities in the project. Partners should demonstrate support of civil rights across the lifespan for people with disabilities.

Conceptual Framework for the Design of the Project. The project should be guided by a conceptual framework that incorporates a civil rights framework, the core values in the Developmental Disabilities Assistance and Bill of Rights (DD Act) and other relevant evidence or theories related to discrimination and equal access to health care. The application should describe how the conceptual framework will be used to guide all aspects of the project.

Evaluation to assess progress and determine outcomes from the project. It is expected that the project will use process evaluation techniques to analyze how the project activities are delivered to determine, among other things, the extent to which the project is being implemented as planned, how the project activities are being received by the target group, the barriers to implementation, and areas for project improvements/refinements. It is also expected that the project will use summative evaluation techniques to determine project success in meeting the intended outcome of enhancing the health and safety of individuals by increasing their independence, social capital, self-determination, community integration, productivity and participation.

Sustainability: An expected outcome of this project will be sustainability of the efforts to raise awareness about the issue of medical discrimination experienced by the ID/DD and of the resources available to ensure equal access to health care. During the course of the project, efforts should be made to generate the sufficient resources and strategies for organizational sustainability, financial sustainability and/or community sustainability to continue and refine the work.

Project Impact
The development and dissemination of the medical protocols will ensure that Americans with ID/DD experience improved access to health care, life-saving treatments, and to mental health care, leading to greater equitable health care across our nation free from discrimination by:

Enhancing the health and safety of individuals with ID/DD by ensuring equal access to medical care and interventions.

Strengthening the knowledge, skills, retention, and advancement of the health care professionals treating patients with ID/DD as well as strengthening the knowledge of community partners who serve individuals with ID/DD.

Strengthening and elevating the leadership roles that self-advocacy organizations, family-led organizations, and other peer support networks working together with families and others must play in improving and ensuring equal health care access for individuals with ID/DD.

Enhancing the effectiveness and coordination of efforts by the state, the DD Act network and others to anticipate, avoid, investigate, reduce and remediate civil rights violations in the health care system for people with ID/DD.

Engaging self-advocates and family members in meaningful ways to carry out the project.

Conduct gap analysis of existing data and research, medical curricula, policies, guidelines, and protocols around medical discrimination issues that exist for the ID/DD population, including in areas such as organ transplants, pre-natal counseling, aging, end of life, mental health referrals, suicide ideation and any others identified by the applicant;

Convene a panel of partners and stakeholders to use findings from gap analysis to develop and validate protocols to support medical professionals treating patients with ID/DD without discrimination; and

Conduct national disseminate of protocols to multiple professionals in the medical and allied health fields to raise awareness of the issue and the resources.

Applicants must address the following components into the project proposal:

Partnerships in the design and implementation of the project: Partnering with local, state, and national level organizations, agencies and other relevant stakeholders, including at least one self-advocacy organization and one family-led organization, to conduct all three project activities. The DD Act defines “advocacy” as an active support of policies and practices that promote self-determination and inclusion in the community and workforce for individuals with ID/DD and their families. Successful applicants will propose a coordinated approach across various partners. A signed Memorandum of Understanding (MOU) between the members of the partnership must be submitted as part of the application. The agreement should describe how the entities participated in the development of the application and more importantly, how they plan to work together to ensure the goals and objectives included in the application are achieved. Applicants should demonstrate support of civil rights across the lifespan for people with disabilities.

Meaningful and active engagement with self-advocates and family members throughout all phases and aspects of this project. In addition to the partnership requirement above, it is expected that self-advocates and family members will be fully engaged throughout the life cycle and in all aspects of this project, including in conducting the gap analysis, developing and testing protocols, and national dissemination efforts. Self-advocates and family members are expected to serve in various roles and capacities in the project.

Meaning and active engagement with the medical community and subject matter experts throughout all phases and aspects of this project. In addition to the partnership requirement above, it is expected that members of the medical community, including the health and allied health professions, will be fully engaged throughout the life cycle and in all aspects of this project. Medical professionals should inform the gap analysis, the development and testing of protocols, and national dissemination efforts. Medical professionals are expected to serve in various roles and capacities in the project. Partners should demonstrate support of civil rights across the lifespan for people with disabilities.

Conceptual Framework for the Design of the Project. The project should be guided by a conceptual framework that incorporates a civil rights framework, the core values in the Developmental Disabilities Assistance and Bill of Rights (DD Act) and other relevant evidence or theories related to discrimination and equal access to health care. The application should describe how the conceptual framework will be used to guide all aspects of the project.

Evaluation to assess progress and determine outcomes from the project. It is expected that the project will use process evaluation techniques to analyze how the project activities are delivered to determine, among other things, the extent to which the project is being implemented as planned, how the project activities are being received by the target group, the barriers to implementation, and areas for project improvements/refinements. It is also expected that the project will use summative evaluation techniques to determine project success in meeting the intended outcome of enhancing the health and safety of individuals by increasing their independence, social capital, self-determination, community integration, productivity and participation.

Sustainability: An expected outcome of this project will be sustainability of the efforts to raise awareness about the issue of medical discrimination experienced by the ID/DD and of the resources available to ensure equal access to health care. During the course of the project, efforts should be made to generate the sufficient resources and strategies for organizational sustainability, financial sustainability and/or community sustainability to continue and refine the work.

Project Impact
The development and dissemination of the medical protocols will ensure that Americans with ID/DD experience improved access to health care, life-saving treatments, and to mental health care, leading to greater equitable health care across our nation free from discrimination by:

Enhancing the health and safety of individuals with ID/DD by ensuring equal access to medical care and interventions.

Strengthening the knowledge, skills, retention, and advancement of the health care professionals treating patients with ID/DD as well as strengthening the knowledge of community partners who serve individuals with ID/DD.

Strengthening and elevating the leadership roles that self-advocacy organizations, family-led organizations, and other peer support networks working together with families and others must play in improving and ensuring equal health care access for individuals with ID/DD.

Enhancing the effectiveness and coordination of efforts by the state, the DD Act network and others to anticipate, avoid, investigate, reduce and remediate civil rights violations in the health care system for people with ID/DD.

Engaging self-advocates and family members in meaningful ways to carry out the project.