Managing Care and Services after Brain Injury: A workbook for families and caregivers

Managing Care and Services after Brain Injury: A workbook for families and caregivers

Don Hood, B.A., Marilyn Lash, M.S.W., Ann Glang, Ph.D., and Bonnie Todis, Ph.D.

Families become the real “case managers” for services in the community over time, whether is it a son, daughter, parent, sibling, or spouse who has a brain injury. This workbook teaches families how to communicate effectively, set goals and plan for the future, locate and coordinate services, make referrals that get results, advocate for services and funding, and evaluate what’s important.

Every family can use information in this workbook to cut through barriers, find resources, locate services, pull together care plans and build a future.

Item: MCSB
Price: $30.00
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Full Description

By taking the skills used by professional case managers and modifying this for families, this manual give practical hands on strategies and tools for caregivers to effectively find resources and manage services in the community. Based on extensive workshops conducted with families, it used many personal accounts to demonstrate the management skills of:

  • Assessment How has the brain injury affected the survivor?
  • Information Gathering What do I need to know?
  • Referral When do I need to get a specialist involved?
  • Service Coordination How do I pull this all together?
  • Advocacy How can I help others understand?
  • Evaluation How do I know if this is working?

Samples of all forms and worksheets are included in the manual.


Purchasers of Managing Care and Services after Brain Injury can download and print extra worksheets by clicking on WORKSHEETS and using the password given on page 1 of the manual. You have permission to print or copy as many worksheets from this file as you need.

ISBN# 1-931117-46-2
Pages 106 pages, 7 x 8 ½, softcover with PDF files for worksheets as free download on website.
Year 2009


Don Hood, B.A.

He has worked as a teacher, trainer, and behavioral and educational researcher for the past 25 years. The extensive use of focus groups to refine scripts, videos, pamphlets and manuals has helped Mr. Hood incorporate the “end user’s” perspective in new products. He combines this perspective with a strong belief in person-centered-planning for individuals with disabilities in his work.

Mr. Hood is currently an Assistant Fellow at the Teaching Research Institute at Western Oregon University. In 2000, Don conducted a series of family advocacy skills classes for family members of adults with brain injury. Suggestions of the class participants and recommendations of the coauthors led to the creation of this book.

Marilyn Lash, M.S.W.

Ms. Lash has over 35 years of experience working with persons with disabilities and their families in medical, rehabilitation, educational and vocational settings. Currently, she is President at Lash and Associates Publishing/Training, Inc. in Wake Forest, NC. Author of many publications on the psychosocial impact of brain injury, her writing and training emphasize coping strategies for families and practical interventions by professionals and educators in hospitals, rehabilitation, schools and community programs.

Trained as a social worker at Boston University School of Social work, she has done clinical work as well as program development. While at Tufts-New England Medical Center in Boston, she was Training Director at the Rehabilitation Research and Training Center on Childhood Trauma. She continues to be an Assistant Clinical Professor in the Department of Physical Medicine and Rehabilitation at Tufts University School of Medicine.

Ann Glang, Ph.D.

Combining her interests in Special Education and her commitment to the principles of effective instruction, Dr. Glang has designed and studied interventions aimed at helping teachers and families support individuals with brain injuries. Through her work at the Oregon Center for Applied Science (ORCAS), Dr Glang has served as a principal investigator for numerous NIH-funded projects creating CD and web-based intervention programs.

Dr. Glang has been published extensively in peer-reviewed publications. In addition to her work at ORCAS, she is a senior fellow at the Teaching Research Division of Western Oregon University where she directs research projects on childhood brain injury.

Bonnie Todis, Ph.D.

Since 1990, Dr. Todis has directed or co-directed thirteen research projects focused on the challenges and strengths of individuals with traumatic brain injury and their families. These projects have employed both qualitative and quantitative methodologies to access the perspectives of the participants and to involve them in the development of effective interventions.

Dr. Todis also helps direct activities and conduct evaluation for the Oregon State Implementation grant funded by Maternal and Child Health Bureau and has served as external evaluation consultant for numerous intervention projects.


Chapter 1: Getting to Know You

  • What this workbook is about
  • Ready for action!
  • Conclusion

Chapter 2: Who is ________?

  • Where do you start?
  • The big list
  • Worksheet 1 – Description of the survivor
  • What is critical?
  • Description example
  • Educating others
  • Assessment summary
  • Worksheet 2 – Medical and Rehabilitation Summary
  • Worksheet 3 – Family’s Assessment (description)

Chapter 3: Goals, Hopes, and Dreams

  • Teamwork
  • Making a MAP
  • Worksheet 4 – Think sheet for goals, hopes and dreams

Chapter 4: Refining the Plan

  • Gather information
  • Figuring out the system
  • Putting it in writing, the contact record
  • Worksheet 5 – Contact Record
  • Worksheet 6 – Needs for Information
  • Information gathering summary
  • Making a referral
  • Referral summary
  • Worksheet 7 – Referrals
  • Finding support
  • How do I put this all together?
  • Worksheet 8 – Making a Plan
  • Conclusion

Chapter 5: Partners in Progress

  • Basics of advocacy
  • Passive, aggressive or assertive
  • The five elements of assertiveness
  • The collaborative approach
  • Negotiating
  • Overcoming barriers by advocacy
  • Advocacy summary
  • Worksheet 9 – Changing Attitudes
  • Worksheet 10 – Increasing knowledge
  • Worksheet 11 – Funding
  • Worksheet 12 – Location of services/programs
  • Partners with a common goal

Chapter 6: How do I Know if This is Working?

  • Revisiting the MAPs
  • A new plan
  • Evaluating programs and professionals
  • Evaluation summary
  • Conclusion


Families as Managers

Why do you need to be involved?

No one is prepared for a brain injury. Few families know what to expect as the survivor returns home from the hospital. As families and survivors pick up the pieces of their lives and move on, it gradually becomes clear that life will never be the same again for many. New questions arise. “Why don’t people understand what we are going through? Where can we find the services we need? Who will pay for them? How can we get help?”

Families have lifelong experience and knowledge of the survivor that will never be matched by any professional’s training or clinical experience. Yet, too often, families feel that professionals do not value their knowledge and experience. This training program and workbook are based on the belief that families are the ultimate experts. They are also the only constant link among all the professionals, programs and services used by the survivor.

Families quickly learn that life changes in many ways after a brain injury. Relationships change whether you are a husband, wife, sibling, parent, grandparent, relative or friend of someone who has had a brain injury. Life is truly never the same again, but families do move on. Some stay together and become even closer. Others stay together through many ups and down and difficult struggles. Some split apart.

Families and their members support and care for survivors in different ways. A wife may provide physical care in one family. A husband may work overtime to provide financial help in another family. Siblings may give support and encouragement. Relatives may help with the paperwork and household repairs. Just as each brain injury is different and each survivor is different, so are each family’s choices and decisions.

Families share some common hopes as well as frustrations. Most often they share a desire to help the survivor recover as much as possible. This workbook recognizes the very special relationship that family members have with the survivor as they rebuild their lives. This relationship can be rewarding and emotional, but it can also be exhausting and frustrating.

In most families, there is one person who takes on the major responsibility for the survivor. This responsibility takes many forms – it may be financial, physical, emotional, or social. It may be very direct and involve daily contact. It may be on an “as needed” basis. It may even be done by long distance.

Among the frustrations often expressed by families is the complexity of what is commonly called the “system”. With shorter stays in hospitals and rehabilitation programs due to insurance restrictions, families become responsible for managing ongoing care and services sooner than ever before.

Families quickly find that there is no single person available to coordinate services in the community. Ideally, a professional would be available to identify, negotiate, coordinate, manage and evaluate services. However, this usually does not happen. It comes down to the family. Yet just as families are struggling to adjust to the emotional trauma of brain injury and regain some sense of normalcy in their lives, they are now faced with trying to figure out what services are available in the community. What is the survivor eligible for? Which services or programs provide what the survivor needs? What choices do we have? Many families worry that the progress achieved during the days, weeks or months of hospital care and rehabilitation will gradually slip away if needed services and programs are not available in the community. Survival is just the beginning. It is the quality of life that provides satisfaction and meaning for the survivor as well as the family.

Some families describe their lives as “before and after” the brain injury. Many feel that their lives have literally been turned upside down. While they concentrate on getting through the demands of the day, they face an uncertain future. Many find that the friends and relatives who were so supportive earlier no longer call or visit. Just as families most need support and encouragement, they find themselves feeling lonely and isolated. For the survivor, this sense of being a different person can lead to lowered self esteem, depression, and even suicide attempts. However, some survivors may not recognize that they have changed which adds to the frustration of family members.

Funding is critical to obtain services in the community and private insurance often does not cover non-medical care. Many community programs depend upon public funding which can vary from year to year and is vulnerable to budget cuts. This creates even more confusion for families just entering the system. State agencies have programs for adults with disabilities, for persons with developmental disabilities, mental retardation, mental illness or substance abuse. There are also special programs for housing, vocational rehabilitation, disability benefits, and transportation. But how and where does the survivor of a brain injury fit into this system? Where are the services and funding for persons with brain injury?

Families quickly learn that finding services in the community involves negotiating a maze that has many entry and exit points. It is rarely a straight line. Dealing with the bureaucracy can feel overwhelming and confusing. But it is not impossible. One of the most effective strategies is to learn from other families. That is why this workbook is based on the experiences of families and emphasizes the tools and strategies that have worked for them. This workbook can help families become effective managers of community services for survivors of brain injury. It is based on six skills used by professional case managers in hospitals, rehabilitation programs, insurance companies and community agencies. They have been adapted for families.

Using this workbook can help families avoid some of the painful learning by trial and error that many have found so time consuming and frustrating. Preferably, families will use this workbook within the first year or two of the survivor’s injury. But there is no expiration date for its use. It is a resource that can be used repeatedly over time. The skills stay the same; it is circumstances and needs that change for survivors and families. Developing these management skills is an ongoing process that takes time. Take what is valuable for your situation and needs now. Come back to it later when new needs emerge.

The skills are:

  • Assessment or "How has the brain injury affected the survivor?"
  • Information Gathering or "What do I need to know?"
  • Referral or "When do I need to get a specialist involved?"
  • Service Coordination or "How do I pull this all together?"
  • Advocacy or "How can I help others understand?"
  • Evaluation or "How do I know if this is working?"

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