Traumatic Brain Injury 

Advisory Board Toolkit

Developed in partnership by the ACL State Grantees 

serving on the Advisory Boards & Engaging Persons 

with Traumatic Brain Injury Workgroup

April 2021

This project was supported in part by grant number HHS-2018-ACL-AOD-TBSG-0281, from 

the U.S. Administration for Community Living, Department of Health and Human Services, 

Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are 

encouraged to express freely their findings and conclusions. Points of view or opinions do 

not, therefore, necessarily represent official ACL policy.
Toolkit Sections

Introduction ................................................................................................................. 1

1. Describing Board Member Roles & Responsibilities.................................................... 3

2. Creating Bylaws....................................................................................................... 7

3. Developing a Mission Statement ............................................................................ 11

4. Agenda Templates & Suggestions........................................................................... 17

5. Statutes and Mandates........................................................................................... 19

6. Recruitment Techniques ........................................................................................ 23

7. Tips & Tricks for Getting People Involved and Engaged ............................................ 27

8. Advisory Board Composition .................................................................................. 31

9. Important Partners................................................................................................. 35

10. Robert’s Rules of Order, Simplified .......................................................................... 41

11. Orientation Plan for New Board Members................................................................ 45

12. Meeting Federal Recommendations and Requirements ........................................... 51

13. Funding Resources ................................................................................................ 55

14. Full Participation Guidelines................................................................................... 59

We invite your feedback on this Toolkit. Please complete a brief survey

(http://uaa.co1.qualtrics.com/jfe/form/SV_0PdnlQFiq8CZ77L) to share your 

thoughts on the individual sections. 
1 

Introduction 

States across the U.S. have established or are working toward implementing a 

TBI advisory council or board. These boards serve to identify and report on 

gaps in resources and services and make recommendations on ways to 

improve and develop needed resources and services that benefit people living 

with a brain injury; their caregivers, family members, and health care 

providers; and community stakeholders. Such boards are also a requirement 

of states awarded grants through the U.S. Department of Health and Human 

Services Administration for Community Living (ACL) Traumatic Brain Injury 

State Partnership Program. And as part of its commitment to person-centered 

planning, the Administration for Community Living encourages that people with 

brain injury comprise a 50% representation on these boards. 

Brain injury advisory boards can be legislatively mandated or organized on a 

volunteer basis. In addition to formalizing identified state gaps and needs, they 

also provide a state of the state summary of brain injury services, gaps and 

needs on an annual basis to their state’s legislature, governor and other public 

and private stakeholders. Each BI advisory board determines its own scope 

and focus, but their common goal is to improve quality of life for citizens living 

with brain injury, their families, and supporters. It is the work of state BI 

Advisory Boards to develop goals and a state plan that reflect the needs of the 

state’s TBI population.

This TBI Advisory Board Toolkit aims to provide guidance and best practices 

to help state programs establish or sustain these advisory boards and, most 

importantly, to help them fully engage all advisory board members, especially 

people with brain injury, in planning and leading state work. (BI leadership 

groups may also be referred to by states as councils, committees, and 

workgroups. For the purposes of this toolkit, the term BI Advisory Board is 

used throughout.)

This Toolkit includes 14 individual components/sections developed by 

grantees of the ACL Traumatic Brain Injury State Partnership Program. We 

invite you to provide your feedback on any/all sections. Please complete a 

brief survey (http://uaa.co1.qualtrics.com/jfe/form/SV_0PdnlQFiq8CZ77L)

to share your thoughts. Your feedback will be used for edits and revisions 

as the toolkit evolves.
2 

Background

This Toolkit was created by the Advisory Boards and Engaging Persons with 

Traumatic Brain Injury Workgroup of the ACL Traumatic Brain Injury State 

Partnership Program (TBI SPP). The TBI SPP awarded grants to states in 

2018 in two categories: Mentors and Partners. Grantees were assigned to 

workgroups established in accordance with topics relating to states’ goals. The 

Mentor grantees who have expertise in each topic work with Partner states to 

help develop, implement and/or expand activities relating to these topics. 

Tennessee and West Virginia were awarded Mentor Grants and lead the 

efforts of the Advisory Boards and Engaging Persons with Traumatic Brain 

Injury Workgroup. In addition to Tennessee and West Virginia, the Workgroup 

is comprised of 10 Partner Grantees: Alaska, Arkansas, California, Georgia, 

Kentucky, Maryland, Massachusetts, Minnesota, Rhode Island, and Virginia. 

Product development is one of the requirements by ACL for the workgroups. 

As a result, the Advisory Board and Engaging Persons with Traumatic Brain 

Injury Workgroup determined state brain injury programs would benefit from a 

toolkit to assist states on how to structure an advisory body, both legislatively 

sanctioned/governor appointed or community organized, to guide activities, 

oversee grant efforts and provide infrastructure for creating service systems 

that benefit individuals with brain injury and families. The toolkit demonstrates 

structure and process for states who are just starting with advisory board 

implementation and provides resources for states who need assistance with 

full engagement of seasoned members and agencies. 

The grantees involved in developing the individual sections of this Toolkit are 

listed on the section heading pages.

Note: The term advisory board is used to describe a necessary component 

per the TBI Act, which stipulates that state programs establish an advisory 

board to “...advise and make recommendations to the State on ways to 

improve services coordination regarding TBI. Such advisory boards shall 

encourage citizen participation through the establishment of public hearings 

and other types of community outreach programs. In developing 

recommendations under this paragraph, such boards shall consult with 

Federal, State, and local governmental agencies and with citizens groups and 

other private entities.” 
Describing Board Member 

Roles & Responsibilities

In this section we identify positions within the board, along with 

essential requirements and responsibilities of board members. 

States Involved: WV, MA, MN

01
4 

Best/Promising Practices

Advisory boards focused specifically on traumatic brain injury commonly use 

promising practices to describe the role of an advisory board member and to 

solicit applications. Descriptions often incorporate the following elements: 

 A brief review of the board and its function within the larger network

 Roles and responsibilities of members including conflict of interest 

disclosures

 Opportunities available to members including potential specialized 

committee service

 A list and description of committees within the board 

 A sample agenda and minutes

 Contact information for individuals who are interested in applying.

Adhering to best practices, other boards also include the following in board 

member descriptions: 

 Board member compensation (if applicable) 

 Specific skill sets or experiences sought from members

 Board structure and/or an organization chart illustrating the board’s role 

in larger efforts and its relationship with other entities

 Benefits of board service (e.g., greater opportunity to support and 

expand capacity of larger network; deep involvement in activities; and 

opportunity to network with others who have significant expertise in the 

area).
5 

Descriptions Based on Roles and Opportunities

Board member descriptions are often delineated by the type of membership 

and additional roles each member may currently provide. Specifically, different 

responsibilities may exist for voting vs non-voting members, board officers, 

and members who are engaged in committee activities. Below are board 

member descriptions from national samples. 

Members (Voting or Non-Voting)

 Convey the priorities and recommendations of the TBI Advisory Board 

to other relevant state or private boards, commissions, committees or 

workgroups on which members participate.

 Update the TBI Advisory Board on the work of other relevant boards, 

commissions, workgroups and committees.

 Contribute to products (of various media formats including annual 

report, presentations) to particular audiences with recommendations for 

variety of areas including federal funding dedicated to services for 

individuals with a traumatic brain injury.

 Help build capacity and training to address the needs of individuals with 

traumatic brain injury.

 Contribute to discussions and implemented plans to coordinate services 

for individuals with traumatic brain injury.

Leadership

 Provide oversight and direction in areas of focus for the board. 

 Provide or contribute to the logistics for meetings; setting agenda and 

overseeing work plan for the board.

 Develop and disseminate minutes to various audiences.

 Develop and sustain new member orientation methods. 

 Ensure website and other information about the board and its roles is 

available through various formats for members to disseminate to 

partners

Additional Committee Work

 Contribute to the group efforts in the specific focus area of the 

committee (e.g., finance, education initiatives).
6 

General Responsibilities to Consider 

Board members job descriptions also incorporate expectations of the 

members’ involvement with the board. These commonly include:

 Attending board meetings and other events/functions (noting frequency 

and total number in a given year). 

 Review agenda and supporting materials prior to board meetings.

 Provide support and advice to program(s), assist in the development of 

new programs, and identify best practice standards.

 Realistically assess the demand for practices, tools, and resources 

within the field that are either evidence-based or practice-based in 

nature. 

 Identify and present opportunities for program in the noted areas of 

interest for the program (e.g., service, education, research).

 Assist in the identification and recruitment of new board members.

 Provide recommendations for topic presenters for advisory board 

meetings.

Personal Characteristics to Consider

Board descriptions may also incorporate particular characteristics thought to 

be needed by the board or those that strongly contribute to the board mission. 

Best practices within this area have included such characteristics as:

 Ability to listen, work well with people individually and in a group, and 

provide constructive feedback.

 Willing to ask questions, share ideas, opinions, and experiences.

 Possess an understanding and appreciation of, or a willingness to 

learn, the history and purpose of the board and its mission.

 Demonstrate high ethical standards and integrity, both personally and 

professionally.

 Adhere to board policies, including maintaining the confidentiality of 

information and conflict of interest disclosure procedures. See the 

section “Orientation of Board Members” in this toolkit for more 

information about how to incorporate conflict of interest policies.
Creating Bylaws 

In this section we provide descriptions and examples of the rules and 

procedures used by brain injury advisory councils, committees, and 

boards in various states. 

States Involved: TN, RI, GA

02
8 

Best/Promising Practices

Bylaws are an organization’s written rules and serve as an internal affairs 

guidebook. They establish procedures for holding elections, organizing 

meetings, quorum requirements, membership structure, and other essential 

operations. They should serve as an organizational manual and guide. 

Bylaws are structured with section headings called Articles and subheadings 

called Sections. Below are brief explanations of the terms that are often used 

in bylaws, either as Articles or Subheadings. Not all these terms are used in all 

bylaws; select the ones pertinent to your needs. When writing bylaws, start 

with an outline format. This will make your bylaws readable and standardized 

to other bylaws. Use language that is simple yet clear.

Term Explanation

Name/

Organization

The name of the entity. Option: include the name of your 

state. 

Purpose(s) Why the entity has been organized and specific activities of 

the entity. 

Vision The declaration of the entity’s objectives, intended to guide 

its internal decision-making. 

Authority 

Clause

How the entity was established and empowered, i.e., by 

legislation. The authority clause may dictate such things as 

the composition of the entity, the number of members, etc.

Mission A formal summary of the aims and values of the entity.

Members May include the required qualifications, the number of 

members, the appointment process, term limits, removal 

and resignation. NOTE: Membership composition with 50% 

representation by persons with brain injury is strongly 

encouraged. 

Qualifications Attributes or accomplishments required for membership. 

Dismissal of 

Members

Describes the terms for which a member is dismissed; may 

be dependent on meeting attendance. 

Officers May include titles of officers, election guide, term limits, and 

duties. 

Duties The specific tasks assigned to each officer and/or member. 
9 

Term Explanation

Meetings The frequency, the type of meeting, what constitutes a 

quorum. 

Attendance Minimum attendance requirements and subsequent 

consequences

Committees Types of committees could include standing committees 

of various titles, ad hoc, task forces along with meeting 

requirements and duties

Responsibilities Specific duties of officers and/or committees

Council Staff Describes source and responsibilities of administrative 

staff

Nominations 

and Elections

Development of a nominating committee; how members 

are nominated and elections conducted

Terms The length of time a member serves; may include the 

maximum number of terms or years to be served

Quorum The minimum number of members that must be present 

at any meetings to make the proceedings of that meeting 

valid

Rules May refer to Robert’s Rules of Order for instances not 

covered in the bylaws

Parliamentary 

Authority/

Procedure

Describes how business will be conducted. Often refers 

to Robert’s Rules of Order
10

Term Explanation

Order of 

Business

The topics to be included in a typical agenda

Conflict of 

Interest

A situation in which an individual has competing interests 

or loyalties. Members may sign a conflict of interest 

policy

Voting May include quorum, voting privileges, voting methods, 

proxy voting

Amendment to 

Bylaws

The procedure and required approvals for changes to the 

bylaws

Referenced Materials 

Bylaws from the following states were used to develop this guide: CA, FL, MN, 

NY, NC, ND, OH, SC, VA. 
Developing a 

Mission Statement 

In this section we include the definition and information regarding the 

difference between a mission and vision statement. Examples of a 

mission statement are also included. 

States Involved: WV, AK, AR

03
12

Mission Statement, Defined 

Merriam-Webster defines a mission statement as: 

A formal summary of the aims and values of a company, organization, or 

individual.

A statement of the purpose or goal of a business or organization. 

A mission statement helps organizations with strategic direction.

Characteristics of a mission statement include:

 Concise (usually one sentence)

 Outcome-Oriented (explains what your organization is trying to achieve)

 Inclusive (broad statement about your key goals)

 Value (show value through the good that you do)

 Credible (realistic, not impossible)

 Motivation (promotes engagement with your organization)

A mission statement answers these four questions:

1. What do we do?

2. How do we do it?

3. Whom do we do it for?

4. What value are we bringing?

Mission statement vs. vision statement—What is the difference? 

A vision statement describes the future, and not just the future of the 

organization, but rather a future intent/outcome for a community as a result of 

the organization’s work. A mission statement, on the other hand, describes 

how the organization might achieve its vision by “declaring the purpose an 

organization serves to its audience” (Kolowich, 2019).
13

Elements of Mission Statements

Mission statements may include different elements based on the fit and 

representation desired by each advisory council. The following elements may 

be considered when developing a mission statement:

The advisory council...

 Demonstrates powerful, effective collaborations of the TBI community 

to funders, legislators, citizens, and others

 Directs the brain injury community in the prioritized provision of wellcoordinated and improved supports and services

 Represents commitments of collaborative efforts

 Guides planning and provides direction needed to achieve long-term 

goals and objectives

Example Mission Statements 

State TBI Advisory Board Examples

To advise and work in collaboration with the Department of Social and Health 

Services (DSHS) and other stakeholders to advise the Governor, the 

Legislature and the Secretary of the Department of Social and Health Services 

on the best ways to create and provide an array of coordinated, accessible 

services and supports which promote optimal quality of life for all individuals 

with traumatic brain injury and their families. 

—Washington Traumatic Brain Injury Strategic Partnership Advisory 

Council

The purpose of the Traumatic Brain Injury Advisory Committee is to provide 

recommendations to the Commissioner of the Department of Human Services 

on program development and concerns regarding the health and human 

service needs of persons with traumatic brain injury.

—Minnesota Traumatic Brain Injury Advisory Council 

To understand, educate, and advocate for the needs of all Alaskans regarding 

traumatic and acquired brain injury. 

—Alaska Traumatic Brain Injury Advisory Council

To engage in advocacy and prevention activities in order to serve those 

traumatic brain injury survivors and their families. 

—Tennessee Traumatic Brain Injury Program
14

To identify needs, gaps in services, and potential funding resources by 

building relationships and collaborating with elected officials and heads of 

state agencies that will influence policy, promote prevention, education, and 

effective interventions that impact outcomes in order to support recovery and 

quality of life for every Marylander affected by brain injury.

—Maryland Brain Injury Advisory Board

Brain Injury Organization Examples

To advance awareness, research, treatment, and education and to improve 

the quality of life for all people affected by brain injury. 

—Brain Injury Association of America:

To raise awareness and enhance the quality of life for all people affected by 

brain injury. 

—Minnesota Brain Injury Alliance

To minimize brain injury through prevention and to support, educate and 

advocate for individuals with brain injuries and their families. 

—Brain Injury Association of New York State

To help children and adults with a brain injury build the skills and confidence 

they need to lead a fulfilling and productive life.

—Brain Injury Services

To encourage federal and state legislation and policy that supports the 

expressed needs of individuals with brain injury and their families. 

—United States Brain Injury Alliance
15

Additional Corporate and Nonprofit Examples

To refresh the world in mind, body and spirit. To inspire moments 

of optimism and happiness through our brands and actions. 

—Coca-Cola Company

Build the best product, cause no unnecessary harm, use business to inspire 

and implement solutions to environmental crisis. 

—Patagonia

To create and promote great-tasting, healthy, organic beverages. 

—Honest Tea

Provides children from birth through age 12, living in homeless or low-income 

situations, with the essential items they need to thrive – at home, at school, 

and at play. 

—Cradles to Crayons

References 

Answer 4 Questions to Get a Great Mission Statement – Forbes

(forbes.com/sites/patrickhull/2013/01/10/answer-4-questions-to-get-agreat-mission-statement/#5802fafd67f5) 

50 Example Mission Statements (topnonprofits.com/examples/nonprofitmission-statements/) 

Basics of Developing Mission, Vision and Value Statements

(managementhelp.org/strategicplanning/mission-vision-values.htm) 

Kolowich, Lindsay (2019, January 27). 17 Truly Inspiring Company Vision and 

Mission Statement Examples [blogpost]. Retrieved from 

blog.hubspot.com/marketing/inspiring-company-mission-statements

Agenda Templates & 

Suggestions

In this section we identify common topics to be discussed and share

sample agendas and time frame recommendations.

States Involved: TN, GA, KY

04
18

Agenda Templates

The following templates are meant to be a general guide for the usual 

components of a TBI Advisory Council meeting. Not all elements will be 

applicable to every meeting. 

Agenda Template 1

Welcome & Introductions

Public Comment period, partner 

sharing, and board/council 

member announcements

Minutes review and approval

Old Business

Subcommittee Reports 

Break

New Business

Question & Answer period, next 

meeting date

Adjourn

Agenda Template 2

9:30–9:40 Welcome & Introductions

9:40–10:00 Public Comment period, 

partner sharing, and 

board/council member 

announcements

10:05–10:30 Old Business 

10:30–10:45 Subcommittee Reports 

10:45–11:00 Break 

11:00 – 11:45 New Business

11:45 – 12:00 Question & Answer 

period, next meeting date

12:00 Adjourn

Agenda Suggestions and Considerations

Council meetings ideally would provide in-person and virtual options for 

meaningful engagement by all.

An agenda for a TBI Advisory Council/Board should be sent in advance of the 

meeting date and should include the following:

 Meeting Date

 Time (start and end)

 Location

 Agency logo

 Agency mission statement

 A notation to mark decisions that require a quorum
Statutes and Mandates 

This section takes a look at how brain injury programs are 

established/authorized within state governments. 

States Involved: WV, KY, MD

05
20

Federal ACL Requirement

Per 42 U.S. Code § 300d–52 – State grants for projects regarding traumatic 

brain injury, all recipients of this funding opportunity must agree “to establish 

an advisory board within the appropriate health department of the State or 

American Indian consortium or within another department as designated by 

the chief executive officer of the State or American Indian consortium.”

Best/Promising Practices

States across the U.S. have established or are working towards implementing 

a TBI advisory council or board. The tables below are adapted from research 

by the TBI Coordinating Center, the Federal TBI Partner Grant Advisory Board 

Workgroup and publicly available information. The first table lists states that 

have legislatively established Advisory Councils along with the enabling 

legislation; the second table lists states that are established by some other 

mechanism. This list is subject to change as states continue to 

create/modify existing legislation as warranted.

Legislatively established

State Establishing legislation Entity designation

Alabama Code of Alabama Section 22-11D-5 Advisory Council 

Arizona A.R.S § 41-3201 Advisory Council 

Colorado Section 26-1-302, C.R.S. Board

Connecticut Substitute House Bill No. 5249 Advisory Board

Florida Florida Statute 381.78 Advisory Council

Hawaii Statutes Act 333 Advisory Board

Illinois Head and Spinal Cord Injury Act Advisory Council

Indiana IC 16-41-42.2 Research board

Iowa Code of Iowa 135.22A, Code of Iowa 135.22B Advisory Council

Kentucky Kentucky Revised Statute 211.50 X

Louisiana Louisiana Revised Statutes 46:2634 Advisory Board

Maine §19001. Acquired Brain Injury Advisory 

Council

Advisory Council

Maryland Maryland Health-General Article § 13–

2105(1) 

Massachusetts The 190th General Court of the 

Commonwealth of Massachusetts Title II 

Chapter 10 Section 59

Chapter 602 of the Acts of 1956 Chapter 6 

Section 74

(Trust fund)

Minnesota Minnesota Statutes section 256B.093 Advisory Committee
21

State Establishing legislation Entity designation

Missouri RSMo 192.745 Advisory Council

Montana House Bill 698 Advisory Council

New Hampshire NH Revised Statute 137-K:2 Advisory Council

New Jersey New Jersey Revised Statute 30:6F-3

Executive Order 84

Advisory Council

New Mexico New Mexico Statute § 27-1-16 (2014) Advisory Council

New York Article 27-CC Coordinating 

Council

North Carolina General Statute 143B-216.65-66 Advisory Council

Ohio ORC Section 3304.231 Advisory Committee

Oklahoma Joint Resolution No. 1040 Advisory Council

Rhode Island H 7456 Advisory 

Commission

South Carolina Article 6 on the South Carolina TBI 

Leadership Council

Leadership Council

Tennessee T.C.A § 68-55-101 Advisory Council

Texas Texas Brain Injury Advisory Council Report Advisory Council 

Utah Utah Code Ann. § 26-54 Advisory Committee

Virginia Code of Virginia § 51.5-9.1 Repealed

Vermont § 7801

Washington House Bill 2055 Advisory Council

West Virginia Formerly in code – now in transition Advisory Board

Established via other mechanism

State Establishing document Entity designation

Alaska MOA between ABIN and State of Alaska SDS

Arkansas In process

California In process

Georgia Georgia Annual Report FY 2017 Commission

Idaho Advisory Board nonprofit bylaws

Kansas In process

Mississippi 2015 Annual Report Advisory Council

Nebraska Nebraska Traumatic Brain Injury Council 

Handbook

Advisory Council 

North Dakota North Dakota Brain Injury Advisory Council 

Bylaws

Advisory Council 

Oregon In process

Pennsylvania Per HRSA grant requirement Advisory Board
22

Referenced Materials 

Tim Williams, et al, Advisory Board TBICC Research, 11/14/18
Recruitment Techniques

In this section we describes techniques to identify and recruit 

members.

States Involved: TN, MN, MA

06
24

Best/Promising Practices

Finding the right people to serve on your Advisory Board requires having a 

process in place. While the actual selection may be someone else’s 

responsibility, soliciting nominations is a critical step. Suggestions for 

identifying and recruiting potential members include: 

 Identify skills and experience needed on the Board to accomplish goals 

 Start by assessing the current board to determine current gaps in skills

 Identify key stakeholders from brain injury related organizations and 

programs

 Identify key stakeholders from other state or federal agencies and 

organizations

 Develop a vetting mechanism 

 To assure a diverse cultural representation of key stakeholders on the 

board, reach out to your communities’ cultural leaders. Consider 

recruiting from populations represented in your state, i.e., Black or 

African American, American Indian, Asian, veterans, Hispanic or Latino, 

and Lesbian, Gay, Bisexual, and Transgender (LGBTQI) community 

organizations. Consider developing a diversity recruitment plan for your 

board 

 Consider the bylaw legal requirements of the make-up of the board, if 

applicable 
25

 Develop a nomination form and request a letter of interest 

 Check with your state regarding appointment requirements

 Create a Council description and expectations of members; include any 

regulated criteria

 “Swap” members by developing relationships with other disabilityrelated boards 

 Invite potential members to attend meetings

 Encourage community members to serve on committees 

 Use social media platforms to encourage nominations

 Make announcements of Board member openings at related events

 Post board openings on your website

 Post board openings with the Secretary of State, if possible 

 Involve former members – ask for suggestions for new members 

 Serve refreshments at meetings

 Announce board vacancies at support group meetings

 Make sure you have state agencies represented on your board that are 

involved in making recommendations for changes to and expansion of 

services 

 Consider reaching out to other ACL-related organizations such as 

Centers for Independent Living, Protection and Advocacy, and the 

Council on Developmental Disabilities

Referenced Materials 

Council of Nonprofits: Finding the Right Board Members for Your Nonprofit

(councilofnonprofits.org/tools-resources/finding-the-right-boardmembers-your-nonprofit)

Ascend Nonprofit Consulting: Creative Ways to Recruit Great Board Members

(ascendnonprofits.wordpress.com/2013/04/13/25-fun-creative-ways-torecruit-great-board-members/)

Tips & Tricks for Getting 

People Involved and 

Engaged

In this section we identify successful strategies to involve and engage 

members, ensure attendance, meet accessibility requirements and 

other helpful techniques.

States Involved: WV, RI, TN, KY

07
28

Involvement and Engagement Considerations

 Build a connection through personal interaction

 Exercise sensitivity and understanding of the wants and needs of 

persons with brain injury

 Develop communication methods with the group 

 Create opportunities for positive member engagement

 Send agenda in advance of the meeting

 Ask a current member to serve as mentor/buddy to a new member 

 Use purposeful seating—mix up populations at the table

 Use name tents

 Note the accomplishments of the group and recognize individuals

 Acknowledge individuals and ideas

 Assign tasks or workgroups

 Clearly identify goals and timelines

 Extend invitations to events as an option to be more involved

 Make phone calls after the meeting to provide any needed 

clarification
29

1. Ensure Attendance

 Make phone calls before meeting 

 Send a reminder email

2. Address Accessibility

 Address transportation issues

 Use a meeting location that is accessible and easy to navigate

 Ensure parking accessibility

 Reimburse mileage/stipend for attending meetings

 Invest in bus tickets where public transportation is available and 

reliable

3. Optimal Communication Options

 Teleconference and phone options

 Provide webcam/microphone

 Keep presentations accessible, check reading level

 Interpreters/ translator options available

 Cultural awareness

 Culturally linguistic appropriate services

4. Amenities to consider

 Water, coffee, snack

 Accessible restrooms

5. Trainings to consider

 Meeting expectations

 What to expect from the board

 How does a survivor’s participation make a difference?

 What does one hope to gain from the experience?

Advisory Board Composition 

In this section we identify examples of individuals within the 

community who would be valuable to the board makeup.

States Involved: TN, AR, MD

08
32

If the membership of a Brain Injury Advisory Board is legislatively mandated 

and/or governor-appointed, the governor may only appoint a specified number 

of positions while other positions are filled by state agencies or organization 

representatives such as advocacy groups (the state Brain Injury Association or 

Alliance, for example). If membership is voluntary, the organizing group may 

use existing board compositions across the U.S. and guidelines set by the 

Administration for Community Living to extend invitations to key stakeholders 

in the development of a leadership group.

Membership terms may be predetermined, but are usually 2-4 years. Some 

states allow members to reapply once a term is complete. The majority of 

these positions are not compensated; however, travel to/from meetings is 

often reimbursed.

An application process to become a member may also be available in some 

states. Each state determines how many positions will be available.

The ability to vote on motions by members may also be mandated or preestablished. For example, most states allow each member to vote. However, 

for some leadership groups, if more than one individual is representing an 

agency or organization, the vote may be consolidated to one. Some boards 

have non-voting members, but any active member should have voting rights 

unless there is a conflict of interest.

Brain Injury Board Members

Brain injury advisory boards generally bring together representation from both 

the public and private sectors of the population. This composition ensures a 

wide variety of perspectives and expertise, including that of the person living 

with a brain injury. 
33

Membership may consist of the following individuals, agencies, and 

organizations:

 Individuals living with brain injury

 Family members and caregivers 

 Advocates

 Veterans service groups as well as state departments of Veteran Affairs 

(VA) and VA Hospitals

 Criminal justice/law enforcement

 Community programs and service providers

• Coalition Against Domestic Violence

• High school athletic association

• Rehabilitation facilities 

• Therapy organizations (e.g., LoveYourBrain Yoga)

 Elected Officials

• State representative

• State senator

 Health Care Professionals

• Behavioral health (mental health and addiction professionals)

• Nurse

• Occupational, physical, and/or speech therapists

• Neuropsychiatrist

• Neuropsychologist

• Physical Medicine and Rehabilitation (PM&R) Physician

• Paramedic

• Sports medicine 

 Brain injury organizations and foundations

• State Brain Injury Association/Alliance

 State/federal agencies/organizations

• Bureau of Behavioral Health

• Bureau for Medical Services

• Department of Corrections

• Department of Education

• Department of Homeland Security

• Department of Military Affairs and Public Safety

• Department of Public Health

• Department of Veterans Affairs

• Disability Rights
34

• State Vocational Rehabilitation Administration

• Family and Social Services Administration

• Independent Living Council

• Long-Term Care Ombudsman

• Protection and Advocacy Agency

• State Assistive Technology Program 

• Developmental Disability Council

• TBI Model System

• Child Death Review 

• Trauma System staff/Registry staff

Board Member Attendance Expectations

 It is expected that Board Members make every effort to attend Board 

and Committee meetings

 Participation by use of technology (i.e., audio/video communications) is 

acceptable

 If Board Member is unable to attend, it is good practice to notify the 

Board Chair in advance and consider identifying a proxy to represent 

them during scheduled meetings

 In the event that Board Members find they are unable to participate to 

the extent necessary, they should consider resigning from the Board

 For additional information regarding engagement, please refer to 

Section 7: the “Tips and Tricks” component of this toolkit.
Important Partners 

In this section we explain the importance of having people with brain 

injury as board members, along with identifying what partners can 

represent the critical issues in your state.

States Involved: WV, AK

09
36

The Administration for Community Living (ACL) is committed to independent 

living and person-centered planning for persons with brain injury. ACL believes 

that persons with brain injury and other disabilities should be engaged in and 

lead the decision-making processes about their services and supports. ACL 

encourages having persons with brain injury comprise a 50% representation 

on Advisory Boards. In U.S. code § 300d-52, the composition of an Advisory 

Board is specifically described. (Please refer to Section 8: Board Composition 

for more details.)

It is recommended that states consider aligning with important partners to 

address specific, critical issues that have an impact on services, supports and 

needs of persons with brain injury. Flexibility and understanding of shared 

mission and goals should guide the role of identified Partners. 

Suggested Roles and Opportunities for Partners

 Attend Board/Council meetings as member or guest

 Join subcommittees and ad hoc committees that focus on specific 

issues 

 Serve as a subject matter expert to the state Brain Injury Board/Council

 Participate on Speakers bureau

 Support and or testify on behalf of legislative initiatives related to brain 

injury supports and services

The following are examples of relevant issues and possible partners:

Aging 

Older adults are vulnerable to TBI secondary to falls. Individuals aging with a 

history of brain injury may seek services from their states’ senior services 

agencies.
37

Potential Partners: State Department of Aging, local Area Agencies on Aging 

(AAAs), Aging and Disability Resource Centers (ADRCs), Silver Sneakers 

programs, Senior Centers, Alzheimer’s Association

Criminal and Juvenile Justice Systems 

Studies suggest that a history of TBI is common among inmates, including 

women and adolescents, occurring among an estimated 25% to 87% of the jail 

and prison population. Many people in prisons and jails are living with brain 

injury-related problems that complicate their management and treatment while 

they are incarcerated. If and when prisoners are released, these problems will 

also pose challenges when they return to the community.

Potential Partners: State department of corrections, community re-entry 

programs, parole and probation

Domestic Violence 

TBI often goes undiagnosed amongst people who experience intimate partner 

violence (IPV). It is not uncommon for victims of IPV to be exposed to multiple 

injuries to the brain. The existence of brain injury among this population and 

resulting functional implications of brain injury often go unrecognized both by 

the individuals affected and by domestic violence professionals and law 

enforcement.

Potential Partners: Domestic violence shelters; law enforcement
38

Employment 

People with brain injury, especially moderate to severe are more likely to be 

unemployed or underemployed compared to their same age peers without 

brain injury.

Potential Partners: State Department of Vocational Rehabilitation, State 

Department of Employment Development, Workforce Development Boards, 

Independent Living Centers, State Vocational Rehabilitation, Department of 

Labor, Work Centers/One Stops, Offices of Employment First

Housing/Homelessness 

People living with brain injury are well represented among homeless 

populations, at least 50%, the same as incarcerated individuals.

Potential Partners: Healthcare for the Homeless, Homeless shelters, 

Community Action Agencies

Injury Prevention 

There are many ways to reduce the chances of sustaining a traumatic brain 

injury. 

Potential Partners: Health Department injury prevention program, Safe Kids, 

Governor’s Highway Safety Office, Falls Prevention program, Child Abuse 

Prevention agencies, Department of Education, local chapter of American 

Academy of Pediatrics, Injury Control Research Centers, Center for Injury 

Science 

Law Enforcement 

Individuals living with a history of BI are overrepresented in the criminal justice 

system. Police who interact with persons with a brain injury need to be aware 

of common signs and symptoms of brain injury and techniques for 

communicating and de-escalation.

Potential Partners: Crisis intervention in law enforcement, Crisis Intervention 

Training (CIT) coordinators, domestic violence shelters, judges, guardians ad 

litem
39

Mental Health 

Individuals with a history of TBI are often served in mental health settings.

Potential Partners: State Behavioral Health Administration/Services 

Behavioral Health Court, National Alliance for the Mentally Ill (NAMI), On Our 

Own chapters; Suicide Coalitions, Peer Mentor programs

Opioids 

Individuals with brain injury are at risk of initiation into opioid use/misuse for 

treatment of pain associated with the sequela of the brain injury. Individuals 

who survive opioid overdose(s) may incur acquired brain injury secondary to 

anoxia/hypoxia. A history of TBI is common among individuals being treated 

for opioid use disorder and standard treatment approaches can be 

challenging. Adaptations for people with TBI increase the likelihood of 

successful recovery from opioid use disorder.

Potential Partners: Substance abuse disorder professionals, local health 

departments, overdose fatality review teams, Governor’s Opioid Council

representative; regional SAMHSA representative

Children/Youth with Special Health Care Needs 

Concussion/mTBI/Moderate/Severe/Sports Injuries – Children who have 

incurred a brain injury or multiple brain injuries have the potential for short 

and/or long-term cognitive, physical, emotional and psychosocial challenges 

which impacts brain development including adverse childhood experiences 

(ACES). Mild traumatic brain injury (mTBI), or concussion, in children is a 

rapidly growing public health concern because epidemiologic data indicate a 

marked increase in the number of emergency department visits for mTBI over 

the past decade.

Potential Partners: Department of Education, coaches, athletic trainers, 

school nurses, children’s hospitals, Family Voices, Center for Parents 

Information and Resources, Early Intervention systems, pediatric 

neuropsychologists; Title 5 Representative
40

Service Members/Veterans

Rates of brain injury are high among those who have been deployed as well 

as those who have incurred brain injury in training accidents and incidents on 

and off base.

Potential Partners: State Department of Veteran Affairs, Veteran Service 

Organizations, State Army National Guard Units, Federal Veterans Affairs, 

Mental Illness Research Education and Clinical Centers 

Substance Abuse 

Many people who incur a traumatic brain injury have a substance use problem 

prior to their injury. In addition, some studies have indicated that between 10% 

and 20% of persons who have experienced a traumatic brain injury develop a 

substance use problem for the first time after their injury.

Potential Partners: State department of substance abuse services

Suicide 

Some studies have estimated that those who have incurred brain injury are 

seven times more likely to attempt or complete suicide than those who do not 

have a history of brain injury.

Potential Partners: National Alliance for the Mentally Ill (NAMI), state 

behavioral health administrations, other advocacy groups for mental health 

such as On Our Own chapters

Tribal/Cultural Organizations 

High rates of brain injury among tribal communities. 

Potential Partners: Tribes, Historically Black Colleges and Universities 

(HBCUs), Associated Jewish Charities
Robert’s Rules of Order, 

Simplified

In this section we identify and explain Robert's Rules of Order and offer 

simplified variation. 

States Involved: TN, MD, AR

10
42

The many rules of parliamentary law are really applications to different 

situations of a few fundamentals. All law is founded on justice, and 

parliamentary law is no exception. Its foundation is justice to all: the member, 

the minority, the majority, the absentee, the organization. The great underlying 

rule is the Golden Rule. As this basic fact is grasped, the entire structure of 

parliamentary procedure becomes the practice of obedience, self-control, 

courtesy and patience. 

1. The organization is paramount. To it belongs the power. Its interest 

and convenience supersede those of an individual member. 

2. All members are equal. Each member has an equal right to propose 

business, discuss it, and vote – rights which cannot be suspended or 

restricted save in the interest of the whole, and then only by a two-thirds 

vote. 

3. One thing at a time. There can be but one main proposition before the 

assembly at one time. Only one member can have the floor at one time. 

4. Full discussion before action. This applies to all main propositions 

and may be suspended only by a two-thirds vote. 

5. Proposition rather than persons. The objective is the opinion and 

decision of the group upon the proposition, hence debate is impersonal. 

6. Propositions may yield to privileges. Matters affecting the 

convenience or privileges of the assembly or an individual may interrupt 

consideration of a question. 

7. No discussion for interruptions. Matters of sufficient urgency to 

interrupt discussion may not themselves be discussed. 
43

8. No discussion for suspension. Motions which have the effect of 

suspending a rule are not debatable. 

9. No second time in the same form. To protect the assembly against 

waste of time, a question once decided may, as a general rule, not be 

presented again at the same meeting in the same form under similar 

circumstances unless a reconsideration is ordered. 

10.The majority decides – usually. The majority decides all ordinary 

questions, but it requires more than a majority to limit a member’s 

parliamentary rights to introduce and discuss questions and vote, or to 

suspend or modify (without notice) a rule of order previously adopted. 

11.Two-thirds vote for extraordinary questions – such as motions to 

amend bylaws, to change or repeal (without notice) a motion previously 

adopted, to suspend the rules, or restrict the rights of members to 

introduce questions, discuss them and vote.

12.Silence gives consent. The right to vote must be exercised. Silence 

has the same effect as assent to the will of the prevailing side.

Duties of the Chair

The duties of the presiding officers are to:

 Call the meeting to order

 State the business before the assembly

 Recognize members and assign them the floor

 State the question and put it to a vote 

 Announce the result

 Decide points of order

 Use Robert’s Rules as needed

* Duties of other officers, committee/subcommittee chairs may also be defined 

as needed
44

Suggestions for orderly meetings of a 

Brain Injury Advisory Council

Seated at the table: Only TBI Advisory Council members and TBI Program

staff. 

Participation in discussion: Anyone who wishes to speak must raise their 

hand and wait to be recognized by the Chair. 

Speakers are requested to speak clearly, succinctly, and loudly enough for all 

to hear; other attendees should give attention to the speaker. 

Motions may be made and seconded only by Council members. 

Handouts available on Simplified Robert’s Rules of Order for attendees. 

Referenced Materials

Lewis, A. and Robert, H. (2006) Robert’s Rules Simplified, Dover Publications, 

Inc.
Orientation Plan for New 

Board Members 

In this section we identify specific trainings and content that would be 

useful in preparing new board members for service.

States Involved: MN, GA, WV

11
46

Best/Promising Practices 

When onboarding a new member to a brain injury advisory board or council, 

there can be a steep learning curve. This learning curve can encompass 

knowledge of state infrastructure around brain injury, the intricate partnerships 

within the brain injury community and the culture of disability etiquette within 

each state. 

An orientation plan for new board members should try and focus on: 

 New member’s learning and accommodation needs for inclusion

 Current members introductions

 New member interest and strengths discovery

 Informing the new member on infrastructure and partnerships

 The state’s brain injury service network

 Operations of the committee/board

 Forming expectations with the new member

 Closing with free-flowing conversation 

 Follow-up with the new member

However informative your plan may be, the key is to have a strong follow-up 

on orientation for the new board member and to identify a person or 

welcoming committee that is responsible for organizing and implementing the 

orientation plan for new members. A sample of board orientations for new 

members is below (see Example 1).

One main starting point that has been effective is to first assess the new 

members learning and accommodation needs. One method for this is to 

use a Member Needs Survey (see Example 2). All members can be asked to 

fill out the member needs survey prior to the first orientation meeting. The 

purpose of this survey is for committee leadership to be aware of individual 

needs which will allow members to participate more fully and make 

adjustments as able. Ask the new member only to provide information that 

they are comfortable sharing.
47

Another way of orienting someone in a meaningful way is to put an emphasis 

on the value of the professional relationship between members. At this stage, 

introductions can really form an impression with the new member. This says 

that the current committee they are joining values people first and foremost. 

Have the current members introduce themselves, their affiliation, their roles 

on the board, why they were drawn to the board and one personal thing. This 

can be done in a zoom call, recorded video, or by reading written biographies 

created by each member.

This is a good way to transition into the new member’s interests and 

strengths discovery. To keep members engaged it is best practice to involve 

the member in finding ways to utilize their strengths and interests. This line of 

discovery may guide the chair of the committee to facilitate engagement in 

meaningful board activities for this new member. For example, the new 

member may work in a setting with children with brain injuries and when asked 

about their strengths and interests their answer may relate to return to school 

activities. The board chair can guide talks to the committee or boards activities 

around this topic and invite them to join in those activities. 

This is a good time in orientation to dive into informing on infrastructure and 

partnerships. Topics like history and overview of the brain injury prevalence 

in your state, the Advisory Committee’s background, mission and authority, the 

relationship and roles between the Advisory Committee and the Lead Agency, 

member’s position description, information about the lead agencies 

organizational structure, all of the committee’s partnerships, funding, and hand 

out a list of acronyms that may be used, even though we try and refrain from 

using jargon they may come across it with partners and in legislation. 

It is also important to provide training regarding the brain injury service 

network. Some of the service training resources that could be included during 

orientation is information on the state’s registry information, data training, 

injury and prevention, brain injury basics, disability services, aging services, 

deaf and hard of hearing services, children and family services, behavioral 

health services, chemical dependency services, juvenile justice services, brain 

injury associations, aging and disability resource center (ADRC), and how to 

be legislatively savvy. 

During orientation, the board needs to discuss the operations of the board. 

Operations of the board may include information on current committee 

strategic goals, work plan updates, reimbursement, lodging, mileage, and 

technical setup for remote meetings. Providing members with a list of board
48

members’ contact information and assigning a mentor may be helpful. This 

would be the time to go through the operations manual with the new member. 

Forming expectations with the new member is important to ensure the 

committee member knows what is expected of all board members. This can 

include things like legal and ethical considerations as well as valuing diversity. 

The board orientation should also include information on the meeting 

schedule, attendance expectations, and participation in subcommittees. One 

suggestion to promote advisory board participation is the utilization of a 

Memorandum of Understanding (MOU) agreement expressing a commitment 

for a specific period of time. An advisory board member can designate an 

individual, a proxy, to represent them by completing an alternate contact/proxy 

form. Refer to your state’s rules, requirements, regulations and/or legislation 

as to use of a proxy. The closing of the meeting should include free 

conversation and information regarding the next meeting date. 

Once orientation is completed, the board should follow up with the new board 

member by setting up a pre-call to each meeting for the first 6 months with the 

new members being onboarded. The agenda can be discussed ahead of time 

and this will form a community of practice. The board can start to invite any 

member who may want to prepare for the meeting with someone else.

Example 1: Orientation Structure Samples

Sample 1

Majority of the afternoon that day was spent on a group activity focused on 

establishing priorities, brainstorming goals and relationship building to move 

the council forward as a cohesive group.

Sample 2

Day 1 Discussing logistics, informing

Day 2 Forming expectations

Day 3 Member interest and strengths discovery, survey, and training schedule

for the new board member
49

Example 2: TBI Advisory Committee

Member Needs Survey

Member Name: ______________________________ Date: ___________

Please check any of the following that would help you better participate 

in meetings. Add any additional comments below.

It would help me to sit (circle one):

o Near screen/presenter 

o Front of Room 

o Back of Room 

o Near phone speaker

o Other:

________________________________________________________

I have difficulty with the following (circle all that apply): 

o Fluorescent lights/indoor lights

o Sound

o Colors

o Smells

o Other:

_____________________________________________________

The following would be helpful (circle all that apply): 

o Schedule breaks if meetings are longer than 1 hour

o Provide materials in larger font

o Provide the agenda ahead of time

Requests of meeting moderator (circle all that apply): 

o Pause the group to check for understanding

o Break down instructions into smaller parts

o Provide instructions in writing

o Help limit side conversations

o Speak slowly

o I use Metro Mobility

Online Accessibility Issues (circle one):

o I don’t have internet access

o I don’t have a smart phone or a computer to attend virtual meetings

Known Gaps

Each state advisory board is different. Some are legislatively mandated and 

some are not. That being said, each orientation to your state’s board will be 

different. This hinders the quality and standardization of the board’s 

orientations across the county.

Meeting Federal 

Recommendations and 

Requirements 

In this section we identify and describe how to ensure that you are 

meeting the federal recommendation for Council composition, 

specifically for legislatively mandated or governor appointed boards. 

States Involved: WV, RI, MN

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Best/Promising Practices

Traumatic Brain Injury (TBI) advisory boards that meet federal 

recommendations and requirements are appointed by the governor through 

executive order or are legislatively mandated. Other terms used 

interchangeably with boards may include commissions, task forces, or 

councils. If a board has the ability to make rules and have the force of law, it is 

created by legislation while boards created to serve in an advisory capacity 

may be created by legislation or by an executive order by the governor. Each 

state has specific rules for development of boards. 

Boards that are created by the governor through executive action may define 

the membership and overall structure, but expenses must be covered by the 

governor or the agency that wants the advisory board. Boards that are created 

by legislation will also define membership and overall structure, but will also 

further define the following areas:

 Purpose of the Board

 Reporting Requirements

 Board Expenses (e.g., finances, budget, spending authority, funding) 

 Membership 

• Appointment of Membership (e.g., number appointed by 

governor, number serving on board per statute)

• Composition/Representation (e.g., defining the qualifications of 

each of the members) 

 People with traumatic brain injury and caregivers

 Healthcare professionals (e.g., neurologist, physiatrist, 

occupational therapist, physical therapist, speech 

language pathologist, case manager)

 Agency representation (e.g., Department of Education, 

DHHR) 

• Compensation (e.g., will members be reimbursed or no 

reimbursement)

 Terms of Office Membership

• Terms of office (e.g., length of term, term limit)

• Vacancies (e.g., Governor appoints new member, previous 

member serves until a new member is appointed)

• Nominations (e.g., recommendations, recommendations)
53

• Removal (e.g., unexcused absences)

 Officers and Duties

• Types of officers (e.g., chairperson, vice chairperson, secretary)

• Election of officers (e.g., majority vote, quorum)

• Terms of office (e.g., length of term, term limit)

• Duties of officers (e.g., responsibilities, roles, assignments)

• Vacancies (e.g., new elections, change of officer role)

• Removal of officers (e.g., just cause, vote)

 Meetings

• Frequency of meetings (e.g., times per year)

• Attendance (e.g., excused, unexcused)

• Meeting notices (e.g., notification timeframes, location of 

announcements)

• Minutes (e.g., minutes available to committee, timeframe to send)

• Voting (e.g., who is allowed to vote, number of votes)

• Quorum (e.g., number of voting members required, in person or 

technology allowed)

• Parliamentary authority (e.g., Robert’s Rules of Order)

• Special committees (e.g., ad hoc committees, task forces, 

appointed by chair)

References

Washington State Office of the Governor (2004). Boards & Commissions. 

Retrieved on February 15, 2021 from 

https://www.digitalarchives.wa.gov/GovernorLocke/boards/role.htm

Secretary of State, Mac Warner. Appointments of State Officials. Retrieved on 

February 15, 2021 from https://sos.wv.gov/adminlaw/Pages/AppStOff.aspx

Rhode Island’s Governor’s Permanent Advisory Commission on Traumatic 

Brain Injuries: Bylaws. 

Funding Resources 

In this section we provide description on identifying and securing 

allocated funding or other sources within the state for specific items 

within an Advisory Board. 

States Involved: TN, GA

13
56

Best/Promising Practices

Traumatic brain injury (TBI) advisory boards are subject to each individual 

state’s originating statute or authorizing document from a state entity. As such, 

each TBI advisory board must follow law or guidelines that prescribe the 

advisory board’s mission, vision, goals and objectives. To ensure the financial 

well-being of the TBI advisory board and its long-term sustainability, states will 

need to access resources from potential funders across the spectrum of 

federal, state, and local governments. Additionally, nonprofit organizations and 

foundations may be suitable for collaboration and funding resources. Finally, if 

applicable and appropriate, approaching private business may be another 

potential source of funding.

For funding from federal, state and local governments, collaboration on shared 

goals can be a source of in-kind and revenue funding. Providing services for 

citizens with TBI cuts across nearly all government departments such as 

health and human services, behavioral and mental health, addictive diseases, 

corrections, aging, children and youth, recreation, etc. Knowing who potential 

partners are and knowing what partners are receiving grant funding is key to 

sustainability.

The following list provides names of programs that receive state and federal 

funding that serve among their populations, individuals with traumatic and 

acquired brain injury. The federal government maintains a database of funding 

opportunities (grants.gov/applicants/apply-for-grants.html) where State TBI 

Advisory Board members can learn of grants they can apply for in partnership 

with state agencies and partners, many of whom are represented on state TBI 

Advisory Boards.
57

In no particular order, potential funders or access to funding:

1. Home and Community-Based waivers (Aging, Blind & Disabled) 

through the state’s Medicare and Medicaid agency 

2. Aging Services which also include Area Agencies on Aging (AAA), 

Aging and Disability Resource Centers (ADRCs) and allied disability 

programs such as statewide independent living councils (SILCs)

3. State and local Department of Health (e.g., collaborating on prevention 

initiatives, sources of health and injury related data) 

4. Departments of Education for: Head Start programs, local boards of 

education, state university systems and private schools and colleges 

office on disabilities 

5. Local recreation departments, sports leagues and associations

6. Hospitals and hospital associations, community clinics, private practice 

groups and teaching hospitals

7. Courts, accountability courts, prosecutors and private practice law firms

8. Nonprofit organizations such as the state’s United Way chapter, 

community foundations, philanthropists and faith-based groups and 

charities

9. Professional associations: the state’s Brain Injury Association or Brain 

Injury Alliance affiliate as well as national brain injury advocacy 

organizations such as the National Association of State Head Injury 

Administrators (NASHIA), fundraising organizations like the Association 

of Fundraising Professionals, regional or state public relations councils, 

all of which can get you in front of potential funders

Full Participation Guidelines

The tips and tools provided contribute to the full and meaningful 

participation of everyone in meetings, work groups and conferences.

States Involved: TN and TBI Technical Assistance and Resource Center

14
60

Full Participation involves supporting individuals with brain injury by providing 

tools, resources, and supports so that they are equal, contributing members 

with a sense of belonging. The original Full Participation Guide was created in 

2008 to help states meet this level of support. The updated document is 

intended as a guide for best practices and can be used readily and frequently 

by states and partners across all states and settings. The tips and tools 

provided contribute to the full and meaningful participation of everyone in 

meetings, work groups and conferences.

Full Participation Work Group Members

Original Members (2008)

 William Crum – Ohio

 Robert Demichelis – BIAA 

 Paula Denslow – Tennessee 

 Marilyn Hern – Idaho

 Ralph William Shields – New York

 Marilyn Spivack – Massachusetts

 Cari Watrous – Maryland

Current Members (2020)

 Paula Denslow – Director, TN Brain Links, and Family Member

 Cheryl Kempf – Traumatic Brain Injury Advisory and Leadership Group 

(TAL-Group)

 Martin Kerrigan – TAL-Group

 Maria Crowley – Traumatic Brain Injury Technical Assistance and 

Resource Center

Overview

The Administration for Community Living (ACL) operates by the standard that 

all people can live with dignity, make their own choices, and participate fully in 

society. Programs supporting individuals with brain injury should provide tools, 

resources, and supports for integrating people with disabilities fully into 

community, work, and recreation to promote equal opportunities, selfdetermination, and respect.

1 When full participation of individuals with 

traumatic brain injury (TBI) and family members is a key principle, their 

presence does not constitute full participation unless they are equal, 

contributing members with a sense of belonging. To follow this principle, 

people may need support or accommodations. 

1 https://acl.gov/about-acl/administration-disabilities
61

ACL’s TBI State Partnership Program (TBI SPP) funds lead state agencies to 

increase and facilitate access so that all individuals with TBI, families and 

caregivers can obtain accessible and person-centered services and supports. 

Grant recipients collaborate across state systems to increase the program’s 

reach and ensure that all systems have the competencies to best serve the 

TBI community. By inviting and supporting individuals with TBI, families and 

caregivers to feel that they are part of a community, full participation is 

achieved. 

The Traumatic Brain Injury Technical Assistance and Resource Center (TBI 

TARC), under the administration of the Human Services Research Institute in 

partnership with the National Association of State Head Injury Administrators 

(NASHIA) worked with TBI SPP grantees and members of the Center’s TBI 

Advisory and Leadership Group (TAL-Group) in the review and revision of the 

original document. The original document, developed by the Full Participation 

Work Group to focus on full participation as one of the key principles of the 

Federal TBI Program, has been updated to ensure current principles and 

platforms are included and applied. 

Full Participation Work Group Goals:

 To identify concrete examples of full participation of individuals with TBI 

and family members and create full participation across all settings, 

services and individuals, regardless of disability, gender, race, ethnicity, 

age or religion.

 To identify and develop resources that will assist the Federal TBI 

Program, the TARC, and all other key stakeholders to better 
62

understand, practice, and encourage the full participation of individuals 

with TBI and family members within the Federal TBI Program. 

 To provide recommendations and proposed outcome measures for 

incorporating mechanisms of assuring the full participation of individuals 

with TBI and family members within the Federal TBI Program. 

Introduction 

The topic of full participation has been a focus area of the Federal TBI 

Program and remains a commitment as States work within their TBI statewide 

Advisory Boards/Councils, contractual activities, training initiatives and 

communities. 

In 2008, the Full Participation Work Group established a Survey 

Subcommittee in order to study this area, and was charged with interviewing 

State/Protection & Advocacy (P&A) grant projects to assess the perceptions 

and realities of the full participation of individuals with TBI and family members 

on their TBI Advisory Boards/Councils. The subcommittee developed a Full 

Participation Questionnaire (Appendix A). Interviews were conducted with 

select participants from P&As and TBI advisory bodies. The original document 

highlights primary findings: laying the foundation of full participation concepts; 

conducting outreach; and providing accommodations.

This updated document is intended as a guide for best practices. As additional 

information is developed, it can be updated and used readily and frequently by 

grantees and partners across all states and settings. The tips and tools 

provided contribute to the full and meaningful participation of everyone.

par·tic·i·pa·tion, noun

1: the act of participating

2: the state of being related to a larger whole

be·long, verb

1: to feel and be a part of ... 

2: to enjoy a sense of contribution, value, self-worth

3: to truly believe one is a natural and equal part of the whole 

4: comfortable...welcome

com·mu·ni·ty, noun

1: a unified body of individuals: 
63

2: a group linked by a common policy

3: an interacting population of various kinds of individuals in a common 

location

Building a Solid Foundation

QUESTION: How do we move from the ideals of full participation to 

truly implementing and activating full participation? 

ANSWER: Create an environment and establish the building blocks and 

practices conducive to full and meaningful participation.

TIPS:

 Ensure that individuals with TBI and family members are equal partners 

in TBI program activities to develop a collaborative, team-based 

partnership of shared responsibilities and decision-making

 Talk with individuals with TBI and family members about their

understanding and expectations of TBI Program participation

 Use people-first language for everyone as it emphasizes respect, 

individuality, and equality

 Allocate funding for and provide necessary expenses to ensure the full 

participation of all in TBI Program activities: time, travel, support, 

accommodations, etc.

 Recognize the inherent knowledge, experience, and expertise of 

individuals with TBI and family members by promoting their participation 

in leadership roles. 
64

QUESTION: How are attitude, commitment and value 

demonstrated?

ANSWER: Setting the tone and embracing equal input with flexible thinking 

creates a winning and welcoming environment for everyone to establish the 

building blocks. It is important to recognize that we all bring value and different 

assets to the table and have a variety of contributions to make.

TIPS:

 Recognize and utilize the strengths and abilities of all participants.

 Individuals with TBI and family members are valuable resources who 

can and should share the responsibility and accountability of TBI 

Program activities.

 Getting to know all fellow TBI Program members builds cohesion which 

enhances everyone’s full participation.

 Formally acknowledge individual contributions, expertise, and value.

QUESTION: How is understanding and knowledge created?

ANSWER: Providing comprehensive orientation, ongoing education, and 

training for all TBI Program participants is necessary as everyone involved has 

the same need for knowledge to fully participate.

TIPS:

 Individuals with TBI and family members may need more time for 

orientation and education with regard to the TBI Program, advisory 

body or group.

 TBI Program staff may need more time for orientation and education 

with regard to individuals with TBI and family members and how best to 

work and communicate with all types of abilities and differences.

 Make use of glossaries, training manuals, and other informational 

resources.

 Avoid the unnecessary use of acronyms and jargon.

 Adhere to universal processes for documents, training, etc. whenever 

possible.
65

QUESTION: Why are organizational structures and processes 

necessary?

ANSWER: Organizational structures and processes provide the vehicle and 

framework for engaging everyone’s full participation. Structure and process 

are an absolute necessity for individuals with brain injury to fully engage and 

participate.

TIPS:

 Assure there is a statement of purpose so that all participants have a 

clear and cohesive awareness and understanding of the purpose and 

function of the TBI Program, advisory body, and their activities. 

 Create and routinely review member-developed vision, mission, and 

principles.

 Establish and adhere to advisory body bylaws/guidelines for 

governance.

 Define advisory body membership, leadership roles, and responsibilities 

with job descriptions and ensure equal access to participation by all 

members.

 Develop and follow policies and procedures.

 Assure frequent, active and equitable engagement by all participants.

 Establish workgroups and encourage input from every member.

 Hold regularly scheduled meetings, with ample notice.

 Provide agendas, meeting materials, and other relevant information as 

appropriate and in a timely manner, and when possible in advance. 

 Formulate and utilize a work plan with goals, objectives, activities, 

responsibilities, timelines, an evaluation plan, and outcomes measures.

 Formalize the process by which materials (agendas, notes, etc.) will be 

sent out prior to meetings and then again after meetings (minutes, 

action items, etc.) 

 Schedule breaks at regular intervals throughout the meeting and 

encourage and remind participants to self-break as needed.
66

QUESTION: Why are accommodations essential?

ANSWER: Soliciting the need for and providing accommodations creates a 

level playing field and allows for the full participation of all parties. Individuals 

with brain injury may not recognize that an accommodation could be of 

assistance to them or may not be able to identify exactly what accommodation 

might be helpful. A person may also be uncomfortable requesting an 

accommodation as that individual might not want to be seen as being different, 

or not able to manage independently. 

The need for accommodation may not always be what it seems. One example 

is sensitivity to fluorescent lighting. Sometimes with this type of lighting, an 

individual with a brain injury can become fatigued and cognitive skills can 

deteriorate, causing a loss of concentration, slowed processing, headaches, 

etc. The individual may not be aware that the lights are the source of these 

issues. All they know is that every time they attend a meeting, they get 

headaches. By outward appearance, having shorter meetings may be 

considered the accommodation, when in actuality a different type of lighting 

may be needed instead.

TIPS:

 Provide education and training on accommodations (physical and 

virtual environments and information formats).

 Conduct group and individual discussions using plain language (for 

example, by asking “What would help to make it easier for you to ...?, 

“is there a way that works best for you?”).

 Inquire about the need for accommodations during the interview 

process, orientation, and at other times as needed.

 When possible, provide participants’ preferred choice of environment 

and modality by which meetings and activities are conducted (i.e., 

teleconference, videoconference, face-to-face meetings). 

 Regularly check in with the individual to make sure that the 

accommodations are working and to see if there is a need for any 

changes or additional accommodations.

 Know what questions to ask and when to ask. Someone may not know 

what it is that is bothering them or causing difficulties unless they are 

told about it. 
67

Outreach and Recruitment 

Outreach is a recognized responsibility of everyone involved with TBI 

programs for improving training, planning and program diversity. It is important 

to conduct outreach to inform, to educate, and to link to other communities and 

populations to assure the full participation of individuals with TBI and family 

members. Effective outreach can broaden the understanding of the needs of 

individuals with TBI and family members and serve as a tool for recruiting 

potential participants in a TBI advisory body or work group. It is essential that 

group participants reflect the diverse backgrounds of individuals with TBI and 

family members. Advisory bodies and committees must strive to build 

relationships with a variety of individuals and organizations in the community. 

Advisory bodies and communities create opportunities to make the most of 

their available resources in all activities, including outreach, through building a 

solid foundation. 

QUESTION: Why is outreach important?

ANSWER: Outreach provides opportunities to establish relationships with a 

variety of individuals and communities, including those that are unserved and 

underserved.

TIPS:

 Outreach fosters support for the TBI Program.

 TBI Programs learn about the needs of individuals with TBI and family 

members from a variety of communities within their States.

 Outreach identifies, develops, and builds resources.
68

 Partners, collaborators, and advisory bodies can educate communities 

about the needs of and resources available to individuals with TBI and 

their families.

 Outreach promotes awareness of advisory body and TBI Program 

activities.

 Outreach creates awareness of opportunities to participate in TBI 

Program activities.

 Outreach encourages paying attention to current trends and needs.

 Outreach enhances advisory body recruitment.

QUESTION: How does a program prepare itself to conduct 

outreach?

ANSWER: Preparation begins with the foundation of the TBI Program.

TIPS:

 Create an expectation that outreach is part of the TBI Program’s 

mission.

 Make outreach one of the values of the TBI Program.

 Include outreach in the written mission and values of the TBI Program 

and how they relate to the TBI State Plan.

 Discuss the importance of outreach with all potential partners.

 Provide an orientation handbook to all new advisory body members that 

has a section devoted to outreach and its importance to the work of the 

advisory body and TBI Program.

 Identify needed characteristics and skill sets of diverse populations and 

communities, with a connection to the mission of the TBI Program.

 Create a plan to conduct outreach.

QUESTION: How does the TBI Program ensure effective 

communication with respect to the mission, purpose, and 

activities?

ANSWER: Speak plainly and create materials that are accessible and userfriendly.
69

Verbal Communication

 Don’t use jargon and limit the use of acronyms. 

 Seek feedback from participants during communication. 

 Listen with openness to new and different ideas. 

 Have a written plan so people can refer to it. 

Written Communication

 Written material should include people first language* and plain 

language without too much information on one page. 

*People first language puts the person before the disability, and 

describes what a person has, not who the person is. For more 

information, visit the Disability Is Natural website

(disabilityisnatural.com/people-first-language.html). 

 Make materials available in alternative formats as needed. Add 

enriched text or accessible versions as possible. 

 If information needs to be translated into another language, make sure 

the translation is in keeping with the literacy and dialect of the 

individual. Check to see if translations are accurate and appropriate. 

TIPS:

 Be flexible; know that individuals will process and engage differently.

 Understand the population and community involved.

 Recognize how communities interact and make accommodations as 

needed.

 Keep the message clear, concrete and simple. Focus can be a 

challenge for individuals with TBI. 

QUESTION: How do members of the advisory body or group 

engage in outreach?

ANSWER: Members can develop and carry out an outreach plan by actively 

utilizing the various strengths of the advisory body.

TIPS:

 Ask what communities need to be contacted.

 Reaching out to unfamiliar communities where cultures and languages 

may be different can create feelings of apprehension and uncertainty.
70

 Check to see if there are TBI Program participants with contacts in the 

community. 

 Determine if there are other government offices, community or not-forprofit organizations, and individuals to partner with to carry out plans 

and activities.

QUESTION: How does an advisory body or group learn about new 

communities?

ANSWER: Reach out to other individuals and organizations to learn about the 

community. 

TIPS: 

 Consider contacting institutions such as local schools, colleges and 

universities, homeless shelters, disability advocacy organizations, 

prisons and penal institutions, senior community centers, domestic 

violence programs, assisted living facilities, organizations and state 

agencies that work with people with TBI and Veterans organizations. 

These resources can introduce a group to the community and their 

trusted leaders and provide information on the best way or ways to 

approach outreach.

 Use local medical/community contacts; often individuals are hesitant to 

share personal information and they may already have a dialogue 

established with a medical or childcare provider. 

 When entering a new community, start where the community is; allow 

the community to identify their own needs, customs, concerns, and 

preferences. Ask for a tour, be introduced by the director. Trust 

happens more easily when a new community member makes it evident 

that you are welcome. 
71

 Be prepared to listen and learn, ask questions and do not assume you 

know best.

 Invite representatives of organizations and communities to meet with 

participants of your TBI Program or advisory body.

 Hold meetings in the identified community so that community leaders 

and representatives can attend.

QUESTION: How do you build relationships with community 

members?

ANSWER: Outreach is a tool for building relationships which takes time. Be 

prepared to step out of your comfort zone and move away from familiar 

surroundings.

TIPS:

 Maintain ongoing contact with community leaders, service 

organizations, and others who are well connected in the community.

 Participate in events that are important to the target community, have 

materials available to distribute, and be available for discussion.

 Use a variety of information formats, including websites, newsletters, 

and local media outlets that focus on your work in the community.

 Look at ways to be responsive to community needs and link them to 

other resources or provide other assistance.

 Look to a variety of individuals that represent the spectrum of 

individuals with brain injuries and their families. 

QUESTION: How will the TBI Program and/or advisory body carry 

out the actual outreach?

ANSWER: Outreach begins with identifying and learning about the 

community. As you develop relationships with members of the community you 

can use them to help develop your outreach plan.
72

TIPS:

 Identify the best strategies to reach out to the community, such as faceto-face contacts, local radio, newspaper articles, brochures.

 Materials need to be relevant to the community. Consult with 

community members on language, colors, and use of symbols. If 

people are pictured or identified in a document, make sure they 

represent the community.

 Identify goals and objectives, develop strategies and create a plan.

 Identify responsibilities and timelines.

 Create a system for holding people accountable.

 Create an evaluation plan with outcome measures.

 Evaluate the resources needed to conduct effective outreach – people, 

time, money and connections.

 Keep all participants and communities informed of progress and 

challenges.

 Update/amend plans as needed.

 Involve state brain injury advocacy organizations in the process of 

identifying individuals that may want to participate.

QUESTION: How can you welcome new members or 

representatives from other communities?

ANSWER: Anytime someone new comes into an existing group, they are a 

guest. Treat new members or other representatives the way a guest would be 

treated and make them feel comfortable.

TIPS:

 Greet people with a smile and be friendly courteous and patient.

 Remember it is difficult to be the “new person” feel “different.”

 If there is anything new members or other representatives need to know 

ahead of time, make sure the information is received in a timely 

manner.

 Include new members and other representatives in the socializing of the 

group before, during, and after meetings.
73

 Ask new members and other representatives to evaluate and share 

experiences with the group.

 Individuals from some communities may not want to join for a variety of 

reasons; however, they may be good resources to help your group 

maintain contact with the community.

 Meet with new members before a meeting in order to make them feel 

comfortable and prepared. 

 Consider pairing new members with existing members of the Advisory 

Board to serve as a “mentor.”

Understanding Accessibility & Providing 

Accommodations

Full participation is one of the guiding principles of the Federal TBI 

Program. To enter into conversation about full participation of individuals with 

TBI and family members, there must be a shared understanding of the 

implications of full participation, the attitudes of and expectations about what 

that participation will accomplish and look like. To achieve full participation, 

reasonable accommodations for individuals with TBI may need to be provided. 

Accommodations can range from meeting length, structure, and pace, 

providing a note taker, elimination of side bar conversations, etc. Full 

participation can be particularly challenging as accommodations are, like 

people with disabilities, diverse – and the accommodation for one individual 

may not be the accommodation for another individual with similar residual 

effects.

To assist in assessing the need for accommodations, an Accommodations 

Checklist of potential accommodations has been developed (Appendix B). 

This is not an exhaustive list, but a means of stimulating discussion with 

individuals with TBI. Common barriers to full participation on the part of 

individuals with TBI are generally related to barriers in information capture, 

information storage, information retrieval, and information use. This document 

can also be used in a variety of settings and with other populations of people 

with disabilities. Within this framework, guidance regarding several of the key 

elements of providing accommodations is presented below.
74

QUESTION: What are reasonable accommodations?

ANSWER: The Americans with Disabilities Act mandates equal access for 

people with disabilities in several areas, including employment, transportation, 

public accommodations, communications and access to state and local 

government programs and services. Adjustments, modifications or provision 

of services and equipment may be necessary to enable an individual with a 

disability to enjoy equal opportunities in community, work and recreation. The 

phrase reasonable accommodation is routinely used to include physical, 

program or cognitive access needed under other circumstances, such as 

public programs or providing private services. There are numerous low- and 

high-tech solutions for providing assistance to individuals with TBI. For more 

information about reasonable accommodations visit the Job Accommodation 

Network website (askjan.org/soar.cfm).

QUESTION: What is meant by accessibility?

ANSWER: The dictionary defines accessible as “capable of being seen, 

reached, used, understood or appreciated”. Accessibility extends beyond 

physical space to involve full affordability to facilities, materials, experiences, 

and people. 

TIPS:

 A sense of “belonging” is necessary for accessibility to be fully realized. 

Belonging in this context means having a sense that a person is in the 

right place and feels comfortable participating, rather than being just a 

spectator. This kind of belonging requires respect and equality.

 Accommodations must be appropriate for all the participants, and the 

materials, the pace and structure of a meeting, and time allotted for 

different activities must respect differences among individuals. 

 Materials provided need to follow Section 508 of the Rehabilitation Act, 

as amended by the Workforce Investment Act of 1998 (P.L. 105-220) 

which requires federal agencies to “develop, procure, maintain and use 

information and communications technology that is accessible to people 
75

with disabilities”. For more details on what is involved, visit 

Section508.gov. Websites and associated resources also need to be 

accessible as well, following Web Content Accessibility Guidelines 

(WCAG). For more information about this topic, visit

w3.org/WAI/standards-guidelines. 

 Universal access benefits everyone.

QUESTION: Are reasonable accommodations requests considered

for family members? 

ANSWER: Yes, provided the interests of the person with the TBI are 

respected. 

QUESTION: What are cognitive accommodations? How do I obtain 

information about them?

ANSWER: By definition, cognitive means; “of or relating to being, or involving 

conscious intellectual activity (such as thinking, reasoning, or remembering) as 

contrasted with emotional processes.” Ongoing discussions with all 

participants in the TBI Program and the community promote understanding of 

current strategies and accommodations.

TIPS:

 Provide materials in advance when possible.

 Make available materials in universally accessible and/or alternative 

formats.

 Provide audio or video access to the session or allow recording.

 Provide meeting transcripts when possible.

 Repeat a question to the group, then respond with the answer.

 Invite participants to bring a companion or offer a mentor to accompany 

and assist.

 In advance of an event, prepare individuals for what will take place 

(e.g., share how many people will be in attendance, explain roles, 

discuss what will be going on during each part of the meeting). This is 

especially useful when done at the conference center/hotel before the 

meeting begins.

 Provide individuals the opportunity to ask questions about 

materials/topics that are scheduled to be discussed prior to the 

meeting.
76

 Allow for virtual attendance if needed and be cognizant of the needs 

that may arise from working within this platform.

 Create a separate quiet room during meetings if possible, to provide 

individuals with brain injury some cognitive respite from visual and 

auditory surroundings. 

QUESTION: Who is responsible for ensuring accommodations are 

provided? 

ANSWER: A designated person in a leadership role. 

QUESTION: What is the process of having accommodations met? 

ANSWER: Verbal or written requests can be made by the individual with TBI. 

As a reminder, a person may also not know what to ask for – acknowledge this 

might be the case in certain situations and proceed accordingly. 

TIPS: 

 Review identified requests with the individual to ensure understanding 

of the need and suggestions for how to approach it.

 Include language on all requests documents stating, “all are 

encouraged to participate; if accommodations are needed, contact the 

designated person.”

 Provide for opportunities to regularly check to make sure 

accommodations are being met, with verbal and written reminders.

QUESTION: What types of accommodations can be provided?

ANSWER: Functional, physical and cognitive – create an environment which 

is welcoming to everyone. Accommodations must be appropriate for all 

participants. Materials, the pace of a meeting and the time allotments for 

different activities must respect differences among individuals. 

QUESTION: Are there some accommodations that are unable to be 

provided? 

ANSWER: Providing accommodations is an ongoing process of learning and 

understanding the need to improve communication and accessibility for 

everyone.
77

QUESTION: How do you know what accommodations might be 

optimal?

ANSWER: Ask individuals directly what their needs are; they are the expert on 

their disability. The key to this asking is in the listening that follows. Use 

“common sense” rules; treat others as you want to be treated, respectfully and 

honestly. Consider utilizing an accommodations checklist (Appendix B). Also 

check legal requirements and timelines for providing accommodations. There 

are considerations which are essential in providing reasonable 

accommodations:

 There must be a process in place.

 There must be person in a leadership role that has the responsibility of 

promoting the process and serves as keeper of the process. This 

person must be known as the responsible party for accommodations on 

an ongoing basis to ensure that all members are aware of his/her role.

 For the person in need of accommodation(s), it is imperative that you 

ask for what you need. Too often individuals with TBI and family 

members do not want to bother or burden people with their needs. 

Additionally, individuals with TBI often try to fit in, think that they are 

okay, and do not have needs – when, in fact, they do.

 Always look for what is underneath or below the surface, which may be 

causing the need for an accommodation. Often an underlying 

emotional/behavioral limitation is being manifested as a cognitive or 

physical limitation. Sometimes, an individual with TBI is not able to 

communicate his/her need while in the midst of confusion or “being 

stuck.” 

 Consider a committee that supports the need for accommodation as a 

potential option.

Most importantly, recognizing, appreciating and fostering the value the full 

participation provides is critical to improving the lives of individuals with TBI, 

their families, and their communities. When the time and effort is made to 

implement the full participation and accommodations process up front, it 

generally leads to better outcomes. 
78

Additional Resources

The content provided in this Resource Tool is the responsibility of the authors 

and does not necessarily reflect the views of the Federal TBI Program or 

related partners. Additional resources that might be useful:

Accessible Meetings, Events and Conferences Guide

adahospitality.org/accessible-meetings-events-conferences-guide/book 

Accessible Guidelines for Speakers

ndrn.org/images/Documents/Resources/Webcasts/PR/AccessibilityGuidelines

_Speakers7-09-10.pdf 

Involving Consumers on Advisory Boards

mtdh.ruralinstitute.umt.edu/?page_id=1031 

Iowa Brain Injury Council Handbook

idph.iowa.gov/Portals/1/userfiles/32/ACBI/2019-

2020%20ACBI%20member%20handbook%20Final%20pckedits%20%281%2

9.pdf 

Making Accessibility Real: A Guide for Planning Meetings, Conferences and 

Gatherings 

aucd.org/docs/HCBSAccessibleMeetings.pdf 

Accessible Meetings and Events: University of Georgia

eoo.uga.edu/sites/default/files/accessiblemeetingsandeventsuga.pdf 

SAMHSA’s Guidelines for Consumer and Family Participation

samhsa.gov/grants/applying/guidelines-consumer-participation 

Cultural Competence and Disability

store.samhsa.gov/sites/default/files/d7/priv/sma14-4849.pdf 

Hosting Virtual Meetings

Brain Injury Association of Virginia Virtual Tip Sheet Series

biav.net/support-groups/ 

Texas OABI PSA Video Series: 

hhs.texas.gov/services/disability/acquired-brain-injury/educational-videos

Tennessee Disability Pathfinder: Accessible Virtual Connections

vkc.vumc.org/vkc/pathfinder 

Source: The Compass, Issue Title: Navigating a Virtual World, June 2020
79

Full Participation Self Survey

Created December 2006

Updated July 2020

State Lead Agency:

Advisory Board/Council OR Meeting/Event:

Participant Name and Title/Role:

Date:

Questions: 

1. What is your process of recruiting members?

2. Is there outreach to a variety of communities?

3. How do you orient members?

4. Is on-going education & training provided? If so, what?

5. What percentage of individuals with TBI and family members is 

represented in your group?

6. Are the individuals with TBI and family members active participants?

7. How is this representation defined in membership? Legislatively or 

otherwise?

8. Are the individuals with TBI and family members active leaders?

9. Does the group tend to retain individuals with TBI and family members or is 

there a lot of turnover?

10.Has systems change been enhanced by this level of individual and family 

member participation?

11.In what other ways are individuals with TBI and family members involved 

with your activities?

12.Do you solicit requests for and provide accommodations, as needed?

13.Do you follow up on effectiveness of accommodations provided?

14.Are there accommodations you have been unable to provide?

15.Where do you see room for improvement with regard to full participation?

16.What do you need help with regarding full participation?
80

Accommodations Checklist

Full Participation Workgroup: TBI Technical Assistance and Resource Center

Updated July 2020 (Created March 2008)

A person with brain injury can utilize a checklist of accommodations to express 

their particular needs. Some of the common barriers to full participation are 

generally related to challenges in information capture, storage, retrieval and 

use. This is a starting point for providing a more complete accommodations 

checklist. Common uses might include access related to in-person meetings, 

online meetings, transportation, scheduling, directions, and facilities. Lastly, 

please keep in mind that patience, courtesy and flexibility are always good 

practice.

 Individual Barrier Possible Accommodations

Experience

Too much 

information- feel 

confused, 

overwhelmed, lost 

much of the time

Memory 

impairment; 

attention 

issues; 

fatigue

Break into steps (chunking), provide 

handouts, use summaries, test with 

persons with brain injury (of various levels) 

before finalizing accommodation. Pair with 

a mentor or other member to assist during 

meeting.

Information is too 

complicated

Difficulty 

attending to 

more than one 

topic at a time; 

difficulty with 

concepts, grey 

areas, or 

complex topics

Simplify, break into steps, provide written 

summary, as well as detailed handout; 

consider audio format. Arrange for a 

notetaker. Pair with a mentor or other 

member to assist during meeting. Review 

information before meeting when possible. 

Get closure on one topic before starting 

another topic.

Information 

presented too 

quickly

Difficulty 

tracking; 

memory; 

processing 

speed

Slow down/pause in between points to 

give attendees time to process and make 

notes; encourage note writing; ask when 

to move on; encourage attendees to ask 

clarifying questions; encourage “clarify and 

verify” communication strategy. Ask for 

visual checks during virtual meetings. 

Cannot remember 

points

Memory 

impairment

Provide written handouts, details and 

summaries. Provide materials in advance. 

Summarize, go over points, assignments, 

at end of session. Provide meeting notes, 

summary in follow up and in a timely 

manner.

Personal 

auditory

mode is Processing 

issue 

Provide audio of presented material; allow 

recording with permission of others; give 

participants information about recording 

options (e.g., phone, iPad, allowing such 

devices during presentations).
81

 Individual 

Experience

Barrier Possible Accommodations

Personal mode is 

visual 

Processing 

issue 

Provide copies of PowerPoints, forms, 

summaries, lists of contact names and 

numbers (identified by function). Provide in 

advance when possible.

Do not know why 

I’m here

Orientation Provide orientation session prior to 

meeting. Encourage notes for cueing. 

Provide orienting visual cues during 

duration of meeting.

Lighting is too 

harsh

Fluorescent 

light is stressful 

and can trigger 

seizures in 

some 

individuals

Use natural light, bring in incandescent 

lighting and turn off fluorescents.

Too much 

background noise

Difficulty 

filtering out 

background 

noises

Provide or suggest bringing ear protectors 

to give people “noise breaks” to relieve 

stress. Provide quiet rooms; avoid side 

conversations; do not host in places close 

to busy roads, kitchens, service areas. Do 

not use typical room dividers for breakout 

sessions (not noise-proof enough).

Laser pointers are 

distracting in 

PowerPoint 

presentations; too 

much information 

in slides

Too much 

visual 

stimulation

Ask participants if this is an issue; if so, 

have person use physical pointer. Break 

down information on slides into chunks or 

bullets; discourage use of animation in 

slides, provide at universal reading levels.

Cannot use the 

information

Difficulty with 

prospective 

planning

Provide an aide/notetaker/interpreter or 

encourage family member/friend to also 

join. Encourage sequential task 

completion with organized bullet points or 

ordered steps: listed and numbered.

Cannot see the 

big picture

Difficulty with 

concepts

Provide summary statements in the form 

of “This is why XYZ information matters to 

me,” or similar. Start with “here is where 

we want to end up; here is where we need 

to start to get there.”

There are side 

conversations

Cannot 

concentrate on 

main 

discussion. 

Inability to filter 

outside 

conversations

Remind participants of conference 

meeting etiquette. 

Be respectful of other attendees.

Distracted by 

crowds

Overstimulation Plan/schedule coming and going times 

during sessions. Hold smaller gatherings 

when possible.

No room or place 

to write notes

Cannot capture 

thoughts, items 

for later recall

Provide notepaper or sticky notes, day 

planner inserts 
82

 Individual 

Experience

Barrier Possible Accommodations

with wide enough lines, grey paper. 

Provide pencils. Capture information on 

laptop or iPad. Consider notetaker.

Fatigue Exhaustion. 

Inability to 

focus, 

concentrate

Provide sufficient breaks. Host shorter 

meetings, presentations. Consider all 

factors that may contribute to fatigue &

remedy. Ask for visual checks during 

virtual meetings.

Overstimulating 

environment

Carpet pattern, 

“busy” 

wallpaper, 

lighting, etc.

Consider different meeting space and/or 

facility. Consider alternative meeting 

format – i.e., virtual or teleconference. Ask 

for visual checks during virtual meetings.

General 

distractions

Anything that 

interrupts train 

of thought, 

processing

Turn cell phones, personal devices off or 

place on silent mode and respond away 

from meeting area. Avoid side 

conversations, chaotic situations. Ask for 

visual checks during virtual meetings. 

Too much 

material. Cannot 

find material when 

needed. Get 

overwhelmed with 

so much material

Confusion Do not overload meeting packets. Colorcode materials to agenda items, meeting 

days, subject matter. Place in meeting 

packet in order needed. Pair with 

mentor/other member to assist during 

meeting. Meet afterward to review, 

process, answer any questions that were 

not asked during meeting. 

Virtual meetings 

are exhausting, 

hard to follow and 

too long

Fatigue, 

processing, 

attention, 

distractions, 

busy screen

Encourage hardware and software 

preparation, practice and early logon 

before meetings. Minimize other 

distractions. Change computer settings 

regarding light and color. Use a chat or 

question feature to ask questions. Ask for 

recording of meeting or transcripts.
83

Resources for Accessible Virtual Meetings

Full Participation Workgroup: TBI Technical Assistance and Resource Center

Updated July 2020 (Created March 2008)

Compiled by Donna DeStefano, Tennessee Disability Coalition

Virtual Meetings for People with Disabilities by Mike Shea 

Brief information on accessibility guidelines and Zoom meetings

rockymountainada.org/news/blog/virtual-meetings-people-disabilities

How to Make Your Virtual Meetings and Events Accessible to the 

Disability Community by Alaina Leary

General overview, includes guidance for planning, holding, and post-event 

activities rootedinrights.org/how-to-make-your-virtual-meetings-and-eventsaccessible-to-the-disability-community/ 

Best video conferencing apps and software for accessibility

Includes: advantages and disadvantages of video conferencing apps and 

services and tips for better video calls

bighack.org/best-videoconferencing-apps-and-software-for-accessibility/

The Inaccessible Internet May 26, 2020 Source: Slate 

adasoutheast.org/news/articles.php?id=9611

Excerpt: “Employees now working from home are also facing 

videoconferencing challenges. Alaina Lavoie, a writer, editor, and social media 

manager in Boston, finds these calls overstimulating for her as an autistic 

person. “I have to focus and spend a lot more energy on video calls than I 

would on meeting in person or an audio call with no video component,” she 

said over email. She finds herself needing to take multiple breaks during calls 

because the pressure of deciding whom to look at or when it’s appropriate to 

speak exhausts her energy. ‘I think it increases accessibility if events are 

available to watch later, especially since with a virtual event it’s so easy to 

record it and upload it.’”

Toward More Accessible Work Environments

alltogether.swe.org/2020/05/toward-more-accessible-work-environments/

Excerpt: “Though telework is a best practice, Cokley said there’s a “real fear” 

that employers can say, ‘Well, it’s cheaper to be in an older building with stairs 

and no elevator, so maybe Sally can just telework like she did during the 

pandemic.’” 
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COVID-19 Response: Digital Accessibility and Other Best Practices for 

Remote Work

https://disabilityin.org/resource/covid-19-response-accessible-tools-andcontent/

What is a Webinar? And Zoom webinars

accessibilityonline.org/ao/program-format/ 

General resource with info on Zoom, including Zoom accessibility, help for 

first-time users, and hot keys and shortcuts.

Holding Accessible Meetings – election focus 

NOTE: Only PDF available

ifes.org/sites/default/files/inclusion_insights_holding_accessible_and_inclusive

_virtual_meetings.pdf

Includes a table describing some common reasonable accommodations for 

persons with different types of disabilities and accessibility features of virtual 

meeting platforms

How to Host Effective and Accessible Online Meetings with Deaf 

Participants

National Deaf Center on Postsecondary Outcomes

Tips from the National Deaf Center on Postsecondary Outcomes

Hear and Connect: Zoom and Captioning for Hearing Loss

chchearing.org/blog/zoom-captioning-hearing-loss/

Accessibility Tips for a Better Zoom/Virtual Meeting Experience

deafhhtech.org/rerc/accessible-virtual-meeting-tips/

Focused on the needs of Deaf and hard-of-hearing participants in virtual 

workplace meetings; many have also been tested in cross-disability meetings

20 Tips for Teaching an Accessible Online Course

washington.edu/doit/20-tips-teaching-accessible-online-course

American Foundation for the Blind - Additional Resources for Remote 

Instruction

afb.org/about-afb/events-and-awards/afblc-2020-overview/virtual-afblc/remoteinstruction/resources

Free audiobook, “Meet Me Accessibly – A Guide to Zoom Cloud 

Meetings from a Blindness Perspective” mosen.org/zoom/

A three-hour audiobook, written and narrated by Jonathan Mosen 
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Includes basics of attending your first Zoom meeting to content sharing of a 

video and audio from a computer or iDevice 

Zoom tutorial overview with screen reader part 1: Joining a Zoom 

meeting and downloading Zoom

youtube.com/watch?v=24PTpKlLwMU&list=PLng32LADAwnqs1F7RNiANbue

Ts1uVz5S9&index=2&t=0s

Cisco Webex Meetings and Cisco Webex Events Accessibility Features

help.webex.com/en-us/84har3/Cisco-Webex-Meetings-and-Cisco-WebexEvents-Accessibility-Features

Screen Reader Support—The Webex Meetings and Webex Events 

applications are tested to work with the latest version of the Freedom Scientific 

JAWS screen reader. All the keyboard shortcuts listed in the Keyboard 

Navigation section work with screen readers. Screen readers are unable to 

read content from shared presentations, shared applications, and shared 

desktops. 

University of Connecticut IT Accessibility - WebEx by Cisco

accessibility.its.uconn.edu/webex-by-cisco/#

Follow the steps below to specify the closed caption option:

Depending on the operating system you are using, do one of the following:

Windows: In the Meeting window, on the Meeting menu, choose Options. The 

Meeting Options dialog box appears, with the General tab selected by default.

Mac: On the Meeting Center menu, select Preferences. Select Tools.

Do one of the following:

To enable: check the Enable Closed Captioning box.

To disable: Uncheck the Enable Closed Captioning box.

Click Apply, then click OK.

To select another participant to transcribe, select the participant’s name on the 

Participants panel; then right-click (Windows) or select ctrl and then click 

(Mac), then select Change Role To > Closed Captionist.

______________________________________________________________

Captioning 

Web Captioner, a free tool for real-time captioning: webcaptioner.com/

10 Free Tools to Make Your Video Captioning Process Easier

Source: Amara (updated 2/2020) blog.amara.org/2018/05/02/10-free-tools-tomake-your-captioning-process-easier-in-2018/
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Note: Amara is a project of the Participatory Culture Foundation (PCF), a 

nonprofit 501c3. We are driven by our mission to foster a media ecosystem 

that enables everyone to benefit from online video content. Content that can 

enrich lives, but is not currently available to those who cannot hear or 

understand the language of the video. We believe a participatory and inclusive 

world leads to a more understanding and caring society.

Federal Social Media Accessibility Toolkit Hackpad

digital.gov/resources/federal-social-media-accessibility-toolkit-hackpad/

How to Add Closed Captions & Subtitles to WebEx Recordings

3playmedia.com/solutions/how-it-works/how-to-guides/captions-subtitlestranscription-for-webex-recordings/
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