Resources: Persons with Disabilities On-Line Support Program

JVR Health Readiness’ “Persons with Disabilities On-Line Support Program” ….persons with disabilities serving others with disabilities.

The persons with disabilities on-line support program will be an extraordinary forward-looking program which will be capable of providing timely supplies, equipment and services including evacuation tracking capabilities to all persons with disabilities throughout America and its possessions during disasters and “Events of National Significance.” The most salient characteristic of this program is that it will be operated to the maximum extent possible by persons with disabilities.

This Program will feature a unique, seamless, modular-designed information management system with appropriate portions of the data being shared between states, territories, AHRQ/DHHS and FEMA as well as other Federal Agencies as required. This program will comply with HIPAA requirements and yet still provide governments at all jurisdictional levels the time-sensitive information they will need to plan requirements, submit accurate budget data, purchase and contract for goods and services and to provide vital assistance services to “voluntary enrollees” during a disaster.

Background: One of many observations from the 2005 hurricane season is that there is much more to be done at the federal, state and local levels of government to protect and care for persons with physical, social, mental, emotional and developmental challenges during a disaster.  America’s level of Readiness in this area is unacceptable and as a Nation we can do much better.

The Department of Homeland Security has published a list of 15 Federal Planning Scenarios and has encouraged state and local disaster preparedness planners to incorporate these scenarios into future disaster planning documents. It is required to consider persons with disabilities’ needs during each Federal Planning Scenario.

In a 2004 Presidential Executive Order “Individuals with Disabilities in Emergency Preparedness”, the President ordered Federal Response Agencies to consider the special needs of persons with disabilities. The Executive order describes the Government policy will be…. “To ensure that the Federal Government appropriately supports safety and security for individuals with disabilities in situations involving disasters, including earthquakes, tornadoes, fires, floods, hurricanes, and acts of terrorism.”

Proposed Program. “The Persons with Disabilities On-Line Support Program” will be an AHRQ/DHHS developed and resourced State-Based voluntary pre-disaster enrollment program.  The pre-enrollment feature of the system will be similar to the pre-registration of healthcare volunteers in the ESAR-VHP program. Our program’s main feature to the Pubic will be  the input of the enrollee’s individual special needs prior to, during and after a disaster or “Event of National Significance.”

With AHRQ/DHHS funding and oversight, JVR Health Readiness, Inc. will develop requirements, purchase and manage all resources and services identified in the Program’s Requirements Statement sorted by state or territory. AHRQ/ DHHS will not have access to private information on individuals including any characterization of an enrollee’s disability.  AHRQ/DHHS will have visibility of the needs and shipping addresses of enrollees.  AHRQ/DHHS will have total asset visibility of all program delivery status throughout all stages of a disaster or of an Operational Readiness Exercise (ORE). State Public Health officers will have total visibility of the needs, shipping addresses and the people the state has enrolled.

Program Objectives:

  • Develop a voluntary On-Line-Real Time “special needs based program” which will capture all requirements for transportation, equipment, services, life-support back-up power and supplies for all “Special Needs and “At Risk” enrollees.
  • Ensure to the maximum extent possible, that this program is managed and operated by Persons with Disabilities, including a program goal of 75% of program employees being persons with disabilities.
  • Provide AHRQ/DHHS with “On-Line-Real Time” Situational Awareness regarding the support status for all enrolled participants throughout any disaster. NOTE: Since this Program will be a State-Based voluntary enrollment program, AHRQ/DHHS will not see personal enrollees’ information. However, AHRQ/ DHHS will have overarching visibility of the number of persons requiring support and the status of each support package in every state or territory throughout an event. This level of situational awareness and resource visibility will be vital in providing timely sustainment support to jurisdictions during long-duration, high intensity events.
  • Include Special Medical and Shelter Needs in the “The Persons with Disabilities On-Line Support Program.” The special medical needs and shelter needs element  will assist both AHRQ/DHHS, FEMA and The Red Cross in coordinating Pre-Disaster requirements for the appropriate medical needs and the appropriate evacuation modality along with facility requirements for each enrollee.
  • Track all emergency air and ground evacuations of persons with disabilities throughout the disaster and until each enrollee is returned home or to final housing accommodations after the disaster.

Program Functional Capabilities:

  1. Through coordination with all appropriate advocacy groups, Enrolls persons wishing to participate in the “The Persons with Disabilities On-Line Support Program” and records each person's special needs in the "Program."
    This process will be accomplished by using listings and databases from advocacy groups, Public Health Departments, Faith Based organizations and non-governmental organizations (NGO). JVR Health would employ persons with disabilities to input data, track the status of support packages during disasters, etc. The goal for this initiative will be 75% of all Program functions will be supervised and operated by persons with disabilities.
  2. Aggregates all special needs i.e. battery back-up power for home infusion pumps, ventilators, Oxygen delivery systems, wheelchairs etc.  Compiles a requirements list for persons requiring medications and supplies to manage chronic medical conditions.  This “Requirements List” will be the source document for budgetary submissions for jurisdictions at all levels of government.
  3. Prepositions supplies and equipment in regional distribution centers for rapid issue and delivery by pre-defined transportation companies like UPS, USPS, and FedEx etc.
  4. Demonstrates that the AHRQ/DHHS program will protect and respect enrollees’ privacy rights and also highlights the extraordinary capabilities of persons with disabilities to develop, maintain and administer a voluntary Program which will:
    1. Include the addresses and contact name and telephone number of each enrolled person who will require assistance, services, supplies or equipment during a disaster.
    2. List the transportation needs during evacuations for each person without transportation.
    3. Define special accommodations for persons requiring transportation during ordered evacuations.
    4. Include special medications, supplies and equipment (i.e. diabetes supplies, insulin, heart medicines, “uninterrupted power supplies” (UPS) etc.) for homebound persons not requiring evacuation during disasters.
    5. Transmit a list of special healthcare needs to AHRQ/DHHS for planning, programming, budgeting and funding.
    6. Coordinate with all City, State and Territorial Public Health Departments wishing to participate in this vital program.
    7. Track and account for all Grant-funded supplies, personnel, equipment and services in a manner which preserves and conserves AHRQ/DHHS investments in “The Persons with Disabilities On-Line Support Program.”

Proposed JVR Health Readiness Task Work: JVR Health Readiness, Inc. has a wealth of healthcare, Public Health and jurisdictional disaster preparedness experience which can be devoted to the development of this program.  We at JVR Health Readiness, Inc. would be honored to serve as the AHRQ/DHHS program development vendor for Special Needs and “At Risk” populations.  To meet or exceed AHRQ/DHHS’ goals and objectives in this area of operations, JVR Health’s program will:

  1. Coordinate with all appropriate state, local and National advocacy groups and stakeholders to capture all relevant inputs needed to build a robust program capable of supporting persons with disabilities during All Hazards events.
  2. List all special needs groups which the program proposes to support during disasters allowing for an expansion of program enrollment as directed by AHRQ/DHHS in the future.
  3. Partner with all Stakeholders to garner support and to “get the word out” regarding the “The Persons with Disabilities On-Line Support Program” through association literature, newsletters, media communications and other communication vehicles. This effort is required to inform membership groups and the general public regarding the merits of this vital AHRQ/DHHS program.
  4. Apply for all relevant Public Assistance entitlement program waivers freeing persons with disabilities to participate in this empowering program without the fear of loosing their only sources of income.  After the “The Persons with Disabilities On-Line Support Program” is fully fielded and funded, persons on waivers would be in a position to make an informed decision whether to leave the program without a break in benefits or to relinquish benefits  and move to full employment as full time member of “The Persons with Disabilities On-Line Support Program.”
  5. Develop a Mission Support Plan (MSP) for “The Persons with Disabilities On-Line Support Program” which clearly outlines the purpose, goals and objectives of the Program.
  6. Develop a Logistics Support Plan (LSP) which outlines the tasks, requirements, timelines, deliverables and accountabilities (Operational Readiness Evaluations-ORE) required to meet the purpose, goals and objectives outlined in the Mission Support Plan.
  7. Automate all procedures outlined in this paper and develop an automated system which is Internet-based highly secure, password protected and capable of interfacing with all other AHRQ/DHHS systems.  This automated system will provide an intuitive, user friendly system at the “User-End” with exceptionally robust capabilities and redundancies built into the operating system for survivability in worst case scenarios.
  8. Field a fully capable City Pilot Program of AHRQ/DHHS’ choice which demonstrates a robust, innovative, voluntary special needs enrollment program with sufficient redundancies to provide a full complement of pre-disaster identified needs to persons with disabilities.
  9. Based on AHRQ/DHHS’ evaluation and acceptance, continue to field the “The Persons with Disabilities On-Line Support Program” to all jurisdictions who wish to participate in this vital, life-sustaining program.
  10. At each level of fielding (City, State and National) of “The Persons with Disabilities On-Line Support Program”, realistic and live exercises will be conducted to fully test and evaluate the effectiveness of the Program.  Once fielded Nationally, AHRQ/DHHS will be able to test the Program in it’s entirety with a full Operational Readiness Evaluation (ORE) or to target individual components of the Program to test whether corrective actions have been implemented as required by past ORE.
  11. Finally, I want to express my appreciation for the opportunity to forward this JVR Health Readiness Concept of Operations Plan for your review and consideration.

(c) JVR Health Readiness, Inc. 2008

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