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From: the Brain Injury Association of America
http://www.biausa.org/Pages/related%20articles/article.what.families.should. html

TBI Challenge! (Vol. 4, No. 3, 2000)

By Carolyn Rocchio

Out of necessity, family members often assume the unfamiliar role of planning and managing services and treatment for a loved one with TBI. It is common for one or more family members to need to make critical treatment decisions, as well as interacting with physicians, therapists, attorneys, insurance adjusters, disability organizations and other individuals and organizations which may provide assistance and solutions after TBI. Unfortunately, few families are prepared for this advocacy effort and there is no “how-to” resource to prepare families for this seemingly never-ending process.

There are, however, some things that can be done to facilitate this new responsibility and it is helpful to have a working knowledge of case management/care coordination and the function of these professional services. Depending on the circumstances of the injury, some families are more fortunate than others and case managers are assigned soon after the initial TBI. Worker’s compensation cases, some major medical plans and/or group insurance policies may provide for guidance of a catastrophic case manager assigned by the insurance company or agency. Not all case managers function alike (i.e., a case manager representing an insurance company is focused primarily on providing the most comprehensive care which corresponds to the policy benefits and in the most cost effective manner possible).

In contrast, case managers employed by and working in hospitals and rehabilitation settings more frequently act as liaisons between the treatment team, insurance company, individual with TBI and the family. Additional responsibilities of the facility-based case manager may include: 1) documentation concerning progress as required by the insurance carrier, 2) arranging family/survivor conferences, 3) assisting the family/survivor with resource information and educational materials and 4) actively coordinating the discharge plan.

In the private sector, case management firms may be engaged by families, individuals with TBI, attorneys, trustees and/or anyone needing or desiring a lead agent with the knowledge to recommend appropriate resources, contract services, coordinate benefits and act as a liaison between the client(s) and providers. Many state and federal service delivery programs provide case management services. These case managers may serve a mixed disability population or, in some cases, a specific population of clients with disabilities (i.e., those with TBI). They function in a pivotal position between the agency and the client in need of services and their responsibilities may include such things as: 1) eligibility determination, 2) contracting services, 3) information and referral to other agencies and 4) family/survivor education.

When professional case management is not an option, family members and individuals with TBI frequently function effectively in that role and are encouraged to do so. Education is the key factor in acquiring the skills necessary to succeed at this task. If there is insurance to pay bills, learn about the benefits and ways to use them advantageously. Ask questions of the treatment team and keep a notebook handy to record all pertinent information, including information culled from BIA, its web site (http://www.biausa.org) and its chartered state affiliates. Families also should: 1) ask about and visit support groups, 2) inquire about state and federal assistance programs, 3) research the service delivery system, 4) investigate resources on the internet, including links to other sites and 5) monitor newspapers and other medical publications which may sponsor conferences or presentations on TBI. I suggest purchasing an inexpensive medical encyclopedia (i.e., the Merck Manual) that will help explain terms used by medical professionals. Additionally, it is crucial to understand all legislation related to government benefits, community reintegration and return-to-work issues, as well as inheritances and other life changes which potentially can affect continuing eligibility for government-sponsored assistance programs.

Family members who must make decisions on behalf of an individual with TBI have one major advantage which professional case managers do not have-pre-injury knowledge about the individual as a person and not a “patient.” This important information goes a long way in understanding the needs and filling the gaps in discharge plans, setting realistic future goals and developing necessary support systems. Most individuals with TBI will be able to live productive lives in society; however, for those whose injuries impact more severely on executive or motor functions, there always may be a reliance on family or others to manage many facets of their daily existence. “Independence is not a virtue and dependency is not a vice” can be a reassuring catch phrase for a family faced with long-term management of a family member whose preserved skills will not support an independent lifestyle.

There are major gaps in the systems of care that span a person’s lifetime and managed care often can be a stumbling block in the way of progress. In the past decade, however, huge strides have been made in acknowledging TBI as a unique disability. Specifically, the TBI Act of 1996 was the first of many giant steps toward a more supportive environment for individuals with TBI and their families. Additionally, Medicaid waivers are supporting more and more individuals in community-based settings and removing them from placement in inappropriate nursing homes.

Acquiring the skills as case manager for your family member can be done. Many of the founding members of BIA-forced into that role by drastic circumstances-now are professionals in the rehabilitation field where they educate others daily in ways to improve life after TBI.

Carolyn Rocchio is the parent of a son with a brain injury sustained in a 1982 automobile crash. She is the founder of the Brain Injury Association of Florida and a former Board member of the Brain Injury Association.