Excerpts

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?"