Statewide Vision for Brain Injury Policies and Services

The following DRAFT Statewide Vision for Brain Injury Policies and Services is a work in progress. Please visit this site frequently or join the mailing list for updates.

 

DRAFT Statewide Vision for Brain Injury Policies and Services (December 2017)

In the next 5‐7 years, the future of brain injury in Nebraska will have evolved such that the following statements will accurately characterize the realm of brain injury:

  • Nebraskans with a brain injury, regardless of geographic location or financial means, will have access to the necessary resources that they require to pursue their recovery journey.
  • The Voice of people with a brain injury and their family members will exist as a unified Voice of solidarity and advocacy, and will be engaged to shape policies and programs.
  • All stakeholders in the brain injury realm will understand their unique role as well as how they complement each other towards making the future of brain injury better; subsequently, people with a brain injury will have an easier time navigating available resources with the help of specialized assistance from Peer Support Resource Navigators.
  • The Nebraska Legislature will be informed about the nature of brain injury and its ongoing impact on Nebraskans, and will be supportive of funding and policies to support the necessary statewide resources for those with brain injury.
  • The complex nature of an injured brain and the recovery journey will be understood by everyone, such that stigma will be eliminated and the public will be more supportive of efforts to improve overall brain injury support and resources.

 

DRAFT Vision Components

The following five Components do not correspond directly to the above points, but will lead to the realization of the above Vision when they are collectively accomplished.  These Components are more akin to goals, but being broader and more encompassing than a typical goal, are thus given the status of Component.  Each bullet point may be considered as a broad goal.

 

Component 1: Presence of the Voice of Brain Injury Survivors and Family Members: The Voice is the collective voice of all people with brain injury and their families.  It implies a desire for person-centered and person-driven care, policy-making, and advocacy.  It is solidarity.  It is a movement.  It is the ability for people with a brain injury and their families to speak on their own behalf (speaking as), rather than needing someone or something to speak for them on their behalf.  It is identity.  It is unification.  It is camaraderie and support.  It is power of the people.

  • The Voice of BI survivors and family members will be a leading force and equal stakeholder among all facets of BI policy and decision-making, and service planning, design, and delivery. 
  • The BIA-NE will be the Voice-driven home of the survivor and family member Voice, and will be the primary liaison between survivors and family members statewide and the stakeholders of the BIAC. 
  • Nebraska will be recognized as successfully approaching the future of BI from a Voice-driven point of strength. 

 

Component 2: Administrative Leadership: The Vision needs a home and owner, and part of the Vision, then, delineates who/what is the home, owner, and steward of this Vision. It is the responsibility of this entity(ies) to ensure that all stakeholders are informed about the Vision, engaged to be part of realizing the Vision, and valued as leaders within the BI realm.

  • The BIA-NE, as the brain injury Voice-driven organization of Nebraska, will be the owner, steward, and champion of this Vision, and will continually reflect in this Vision the Voice of its statewide membership of people with brain injury and their families.
  • The BIAC will be recognized as the forum within which stakeholders convene to discuss and pursue this Vision. The BIAC will achieve a level of credibility and effectiveness, as outlined in its own Vision, such that stakeholders make it a priority to attend, collaborate, and implement with respect to the proceedings of the BIAC.
  • A statewide conference will convene ‎all stakeholders to review the progress towards achieving this Vision, including all components of this Vision, as well as general BI progress, accomplishments, resources, policies, advances in technology, etc.

 

Component 3: Funding and Sustainability:  There are at least two needs for funding and sustainability.  This Vision addresses both the need for funding for individuals with brain injury, as well as the need for funding for the organizations, programs and initiatives that support the statewide Voice, infrastructure, and administrative leadership of this Vision.

  • BI will be branded beyond concussion, and will be known in the public as a tremendous personal and community challenge that needs to be managed pre, during, and post injury.  
  • State Legislators will understand, acknowledge and appreciate the far-reaching ramifications of BI on Nebraska’s most valuable asset—its people—and will choose to support (financially and with policies) the building, delivery and oversight of the necessary infrastructure and services to support those with brain injury, and those who will suffer a brain injury. 
  • Insurance companies, Medicaid, and the Legislature will acknowledge that BI—or, an injured brain status—is unique, requires an official status and medical code, and will therefore elevate BI to this status. 
  • Brain Injury Week will be established, and an annual branding mechanism will be developed. 
  • State agencies as well as private sector entities will choose to contract with the Voice-driven organization (BIA-NE) to deliver programs and services, and to provide consulting and training. 
  • The public will have a new understanding of the complex challenges that a person with an injured brain faces during their recovery journey after their brain injury.  Stigma will be eliminated, and the public will support infrastructure and resources to support those having suffered a brain injury, and their families.

 

Component 4: Programs and Services: At the heart of this Vision is the need for more programs and services statewide. Although more resources are available in larger population centers, the necessary resources need to be available statewide. 

  • BI survivors and family members will have access to the services they need to support their recovery journey, regardless of geography and/or financial means. 
  • Support groups will exist across the state, and will be supported by BIA-NE, and will be connected as a united Voice through BIA-NE.
  • Peer Support Resource Navigators (i.e., a person who has had a brain injury and can connect with another person with a brain injury on a very personal and supportive level, and who has first-hand knowledge of the available resources and how to navigate through them to access needed assistance) will exist across the state and will support the support groups, provide navigation and support services to survivors and their family members. (This role is currently called a Resource Facilitator, but “Navigator” will imply a much more unique and intense form of engagement).
  • Employers will understand BI and develop programs to engage survivors and to support their families. 
  • The education system will embrace BI training and awareness, and will become a trusted partner with survivors and family members. 

 

Component 5: Voice-driven Advocacy:  It is critical that people with BI can speak on their own behalf, as mentioned in the Voice Component.  Voice-driven Advocacy takes that notion one step further and focuses on the preparatory support, coaching, and assistance provided to BI survivors and their family members so that they are achieve effective advocacy results.

  • ‎Survivors and family members will be trained and coached to share their stories and needs for many positive purposes, including advocacy, education, prevention, support, etc.
  • Statewide BI support groups will facilitate local and regional advocacy efforts.
  • Support networks will exist to connect, engage and mobilize any person with a brain injury and their family members.
  • All people with a brain injury will have opportunities to self-advocate and contribute their Voice to the future of a better system of care for brain injury.

 

Why Does the Vision Exist?

The Vision exists because it serves the purpose of documenting the collective Voice of those Nebraskans who have a brain injury and their families. It was written because without a statement of future direction, needs, and infrastructure, the many different stakeholders engaged in the realm of brain injury would not have a collective future toward which to guide their efforts, nor would they have a compelling reason to collaborate. This Vision, then, exists to bring focus for what the future should look like with respect to brain injury in Nebraska, such that all stakeholders—including those with brain injury and their families, who together represent the Voice of the people with brain injury and who collectively are the most important stakeholder—can collaborate effectively towards achieving this future Vision.

 

Additionally, having a written Vision creates accountability among all stakeholders.  There are many roles that need to be played if this Vision is to become a reality, and the BIAC will, as one of its roles, serve as a forum for discussing the current status of this Vision, efforts and initiatives to pursue it, possible collaborations and funding sources, and other critical topics that relate to the pursuit of this Vision.

 

How Should the Vision Be Used?

Often, an organization develops a Vision and that Vision is placed on a shelf.  Successful organizations that are serious about walking the walk of their Mission Statement in order to achieve their Vision will keep their Vision Statement in print and in front of them to help guide their decisions.

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The Brain Injury Advisory Council is sponsored by Nebraska VR.

This project was supported, in part by grant number 90TBSG0013-01-00, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201.  Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions.  Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.