OVERVIEW
U.S. Department of Health and Human Services
Health Resources and Services Administration
Maternal and Child Health Bureau
Congenital Conditions Program
Congenital Conditions Program
Announcement Type: New
Announcement Number HRSA 09-256
Catalog of Federal Domestic Assistance (CFDA) No. 93.110
PROGRAM GUIDANCE
Fiscal Year 2009
Letter of Intent Due Date: June 25, 2009
Application Due Date: July 15, 2009
Release Date: June 11, 2009
Date of Issuance: June 11, 2009
Penny Kyler
Genetic Services Branch
Division of Services for Children with Special Health Needs
Telephone: (301) 443-1080
Fax: (301) 480-1312
Legislative Authority Title III, Part P, Section 399R of the Public Health Service Act, as amended by the Prenatally and Postnatally Diagnosed Conditions Awareness Act, 42 U.S.C. § 280g-8 (2008).
This announcement solicits applications for activities authorized under as part of Prenatally and Postnatally Diagnosed Conditions Awareness Act (PPDCAA) (Activity Code: U 35, Congenital Conditions CFDA #93.110). The Legislative Authority for this funding opportunity is Title III, Part P, Section 399R of the Public Health Service Act, as amended by the Prenatally and Postnatally Diagnosed Conditions Awareness Act, 42 U.S.C. § 280g-8 (2008).
Under the PPDCAA, Section 399R seeks to increase patient referrals to providers of key support services for women who have received a positive test diagnosis for Down Syndrome, Spina Bifida, Dwarfism and other prenatally or postnatally diagnosed conditions; strengthen existing networks of support through outreach programs; improve available data by incorporating up-to-date, evidence-based information into existing state programs for birth defects and prenatally or postnatally diagnosed conditions and ensure that patients receive information about the accuracy of the diagnostic tests for the conditions. Provisions also include the establishment of or increased access to a resource hotline.
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Congenital Conditions– HRSA-09-256
Guidance Table of Contents
I. Funding Opportunity Description 5
1. Purpose 5
2. Background 5
II. Award Information 7
1. Type of Award 7
2. Summary of Funding 8
III. Eligibility Information 8
1. Eligible Applicants 8
2. Cost Sharing/Matching 8
3. Other 8
IV. Application and Submission Information 8
1. Address to Request Application Package 8
2. Content and Form of Application Submission 9
3. Submission Dates and Times 18
4. Intergovernmental Review 19
5. Funding Restrictions 19
6. Other Submission Requirements 19
V. Application Review Information - Required 21
1. Review Criteria 21
2. Review and Selection Process 23
3. Anticipated Announcement and Award Dates 23
VI. Award Administration Information 23
1. Award Notices 23
2. Administrative and National Policy Requirements 24
3. Reporting 25
VII. Agency Contacts 28
VIII. Other Information 28
ix. Tips for Writing a Strong Application 30
APPENDIX A: HRSA’s Electronic Submission User Guide 33
Appendix B: Registering and Applying Through Grants.gov 62
APPENDIX C: Core Public Health Services Delivered by MCH Agencies 67
Appendix D: Key Personnel 68
Appendix E: Program Specific Data Forms 69
APPENDIX F: GRANT PERFORMANCE MEASURES: FINANCIAL AND DEMOGRAPHIC DATA ELEMENTS 74
Appendix G: Keywords 90
I. Funding Opportunity Description
1. Purpose
This announcement solicits applications for activities authorized under the Prenatally and Postnatally Diagnosed Conditions Awareness Act (Activity Code: U 35 Congenital Conditions CFDA #93.110). The Legislative Authority for this funding opportunity is Title III, Part P, Section 399R of the Public Health Service Act, as amended.
This funding opportunity will allow family support groups to work with health professionals, state genetic services programs and Health Resources and Services Administration, (HRSA)/Maternal and Child Health Bureau (MCHB) on projects that will increase awareness and educate families (including potential adoptive parents) on prenatally/postnatally diagnosed conditions.
Funding may be used to collect and disseminate current evidence-based information and to coordinate the provision of supportive services to parents who receive a positive diagnosis prenatally, at birth, or up to 1 year after the affected child's birth. These supportive services may include the expansion and further development of national and local peer-support programs; creation of a telephone hotline which would provide parents with information on the physical, developmental, educational, and psychosocial aspects of these conditions; awareness educational programs for healthcare providers who provide, interpret, and inform parents of the results of positive test diagnoses for congenital conditions.
2. Background
Several of the conditions that may be prenatally or postnatally diagnosed affect many individuals across the lifespan. Down syndrome, the most commonly occurring chromosomal condition in the United States, occurs in one in every 733 babies born and in the United States, there are more than 400,000 people living with Down syndrome. The National Center for Health Statistics (NCHS) indicates that the Spina Bifida, a type of neural tube defect, has an occurrence of approximately 1 of every 2500 births. The many types of dwarfism such as spondyloepiphyseal dysplasias (SED) achondroplasia and diastrophic dysplasia affect about 1 in 95,000 babies.
The mission of the MCHB is to provide national leadership in partnership with key stakeholders, to reduce disparities, assure the availability of quality care, and strengthen the Nation’s Maternal and Child Health (MCH) state infrastructure in order to improve the physical and mental health, safety, and well-being of the MCH population – all women, infants, children, adolescents and their families, including fathers and children and youth with special health needs.
MCHB has a long history of supporting targeted programs for children and youth with special health care needs, their parents and families. For over twenty years MCHB has funded the MCHB Helpline and the National Hispanic Prenatal Helpline for nine years. MCHB currently supports a coordinated network of 50 Family to Family Health Information Centers across the country. These information resources are available in all fifty states. MCHB has a long commitment to genetics education for consumers and health professionals and has recently created seven nation-wide Regional Genetic and Newborn Screening Service Collaboratives and a national coordinating center for these regional collaboratives. Material developed under funding for implementation of the PPDCAA will be disseminated through the many existing MCHB programs and will provide for a focused attention on prenatally and postnatally diagnosed conditions awareness.
Requirements:
The applicant should address the need for the collection, synthesis and dissemination of information, such as educational and decision-making materials about prenatally and postnatally diagnosed conditions to both families and health/medical providers. A mixed methods evaluation component is integral to the success of this project. Other critical elements include best practices and continuing educational activities that model adult learner “just in time” concepts. Just in time concepts include web-based tutorials, interactive CD-ROMs and other tools to zero in on just the information needed to answer questions or solve problems, or perform specific tasks. Continuing medical education programs with a focus on up-to-date scientific information and include concepts of medial home and family-centered care also should be integrated. The applicant should be cognizant of the potential for outcomes of this project to be incorporated into larger information data bases (such as clinical decision-support tools) and more wide spread health professional educational programs. The applicant should include endpoints that demonstrate:
· Increased provision of up-to-date comprehensive, scientific, evidence-based information about life expectancy, developmental potential, treatments and quality of life.
· Increased linkage to existing and new information and service resources to strengthen existing networks of support.
· Increased availability of scientific, evidence-based information about the accuracy of the tests for congenital disorders.
· Increased patient referrals to providers of key support services for women who have received a positive test diagnosis for Down Syndrome, Spina Bifida, Dwarfism and other prenatally or postnatally diagnosed conditions;
· Increased strengthening of existing networks of support through outreach programs; improve available data by incorporating up-to-date, evidence-based information into existing state programs for birth defects and prenatally or postnatally diagnosed conditions and ensure that patients receive information about the accuracy of the diagnostic tests for the conditions.
· Increased access to or establishment of a resource hotline.
The outcome of these activities should focus on (1) a methodological approach and framework for evaluation of disseminated information (2) development and evaluation of best practices (3) education of families, health professionals and other stakeholders (4) establishment of a resource hotline, and (5) plans for sustainability after federal funding. The project should be collaborative in nature and structured to include partnerships that demonstrate input from organizations such as but no limited to national and local peer support programs, parents and families, advocacy organizations, health care professional groups with expertise in prenatally/postnatally diagnosed conditions, primary care professional groups, Family to Family Health Information Centers, Healthy Start, State Title V agencies, and the Regional Genetic and Newborn Screening Service Collaboratives.
Eligible entities for this cooperative agreement are States or political subdivision of a State; a consortium of 2 or more States or political subdivisions of States; a territory; a health facility or program operated by or pursuant to a contract with or grant from the Indian Health Services or any other entities with appropriate expertise in prenatally or postnatally diagnosed conditions including nationally recognized disability groups are requested to submit applications that address the following:
· Partnership: It is expected that the applicant exhibit appropriate partnerships between health care professional groups and disability advocacy groups including but not limited to nationally recognized congenital conditions advocacy groups, family to family support groups, genetic advocacy groups, health professionals knowledgeable about prenatally or postnatally diagnosed conditions and health professionals involved with the delivery of health and/or supportive services to expectant parents and/or children and their families with prenatally or postnatally diagnosed conditions.
· Education: It is expected that the applicant develop and deliver educational programs (at appropriate literacy levels and cultural sensitivity) about prenatally and postnatally diagnosed conditions, testing, follow-up, treatment, and supportive services to expectant parents and parents wishing to adopt, families, patient advocacy and support groups, and health care providers involved with the delivery of health and/or supportive services.
· Best Practices: It is expected that the applicant develop and disseminate best practices to address the interpretation of information on a range of outcomes including physical, development, educational and psychosocial outcomes and treatments.
II. Award Information
1. Type of Award
Funding will be provided in the form of a cooperative agreement. A cooperative agreement, as opposed to a grant, is an award instrument of financial assistance where substantial involvement is anticipated between HRSA and the recipient during performance of the contemplated project. This means that substantial MCHB scientific and/or programmatic involvement with the awardee is anticipated during the performance of this project.
Under the terms of this cooperative agreement, in addition to the usual monitoring and technical assistance provided under grants, Federal responsibilities will include:
§ Participation in meetings conducted during the period of the cooperative agreement;
§ Ongoing review of activities and procedures to be established and implemented for accomplishing the goals of the cooperative agreement;
§ Review of project information prior to dissemination;
§ Review of information on project activities; and
§ Assistance around establishing and facilitating effective collaborative relationships with Federal and State agencies, MCHB grant projects, MCHB funded resource centers, and other entities that may be relevant to the project’s mission; and
§ Provision of information resources.
Awardee responsibilities include:
§ Ongoing review of activities and procedures to be established and implemented for accomplishing the scope of work.
§ Ongoing communication and collaboration with the Federal awarding agency, i.e. Federal Project Officer.
§ Ensuring the Federal project officer reviews and approves project information prior to dissemination.
§ Working with the Federal project officer to review information on project activities.
§ Establishing contacts that may be relevant to the project’s mission such as Federal and State agencies, and other MCHB grant projects that may be relevant to the project’s mission.
2. Summary of Funding
This program will provide funding for Federal fiscal years 2009 -2012. Approximately up to a maximum of $820,000 is expected to be available annually to fund 1 awardee. Funding beyond the first year is dependent on the availability of appropriated funds for the Congenital Disorders in subsequent fiscal years, awardee satisfactory performance, and a decision that continued funding is in the best interest of the Federal government. Funding is limited up to $820,000 per year.
III. Eligibility Information
1. Eligible Applicants
Eligible entities include States or political subdivision of a State; a consortium of 2 or more States or political subdivisions of States; a territory; a health facility or program operated by or pursuant to a contract with or grant from the Indian Health Services, and or non-governmental organizations with expertise in prenatally and postnatally diagnosed conditions. Applications that fail to show such experience will not be considered. Applicants must have capability and capacity to coordinate activities among the relevant stakeholders and initiate activities at the state, regional, and national level.
2. Cost Sharing/Matching
No cost sharing or matching funds required
3. Other
Applications that exceed the ceiling amount will be considered non-responsive and will not be considered for funding under this announcement.
Any application that fails to satisfy the deadline requirements referenced in Section IV.3 will be considered non-responsive and will not be considered for funding under this announcement
IV. Application and Submission Information
1. Address to Request Application Package
Application Materials and Required Electronic Submission Information
HRSA is requiring applicants for this funding opportunity to apply electronically through Grants.gov. All applicants must submit in this manner unless the applicant is granted a written exemption from this requirement in advance by the Director of HRSA’s Division of Grants Policy or designee. Applicants must request an exemption in writing from , and provide details as to why they are technologically unable to submit electronically though the Grants.gov portal. Make sure you specify the announcement number for which you are seeking relief, and include specific information, including any tracking or anecdotal information received from Grants.gov and/or the HRSA Call Center, in your justification request. As indicated in this guidance, HRSA and its Grants Application Center (GAC) will only accept paper applications from applicants that received prior written approval.