Significant Achievement Awards: Creating a Continuum of Care for a Previously Unserved Population—McHenry County (Ill.) Traumatic Brain Injury Case Management Program

An Illinois program offers a range of specialized services for a group whose needs remain unmet in most communities—pople with traumatic brain injuries and their families. Since 1993 the McHenry County Traumatic Brain Injury Case Management Program has worked to enhance the quality of life of county residents with traumatic brain injuries through early intervention, support, and advocacy.

Each year 2 million people sustain traumatic brain injuries from motor vehicle or motorcycle crashes, falls, recreational accidents, and assaults and violence. More than 50,000 people die. Twenty to 30 percent of injuries result in lifetime disability. Historically, brain-injured individuals have been served by programs designed for persons with developmental disabilities or mental illness, and research has shown that their outcomes in these programs are poor.

In 1991 at public hearings convened by the McHenry County Mental Health Board, brain-injured individuals and their families shared their concerns about the lack of services in the county. The board formed a task force, with representatives from social service and other county agencies, hospitals and rehabilitation facilities, the Social Security Administration, and consumers and family members. The task force identified 185 individuals in the county affected by traumatic brain injury who participated with their families in a survey that revealed large gaps in the service system and an overwhelming need for specialized services.

The task force described several objectives to meet the program's goal, which is to enhance the quality of life of county residents with traumatic brain injury and their families by providing education, early identification, and case management services through a coordinated system of care.

Three major objectives have been the driving force behind the program's development: creation of a central point of intake and referral for brain-injured individuals, provision of intensive in-home case management, and establishment of a community oversight panel to monitor the quality of care. Related objectives include development of a locally based continuum of care, creation and distribution of a directory of resources for persons with traumatic brain injuries, and provision of education and prevention programs for health professionals and the public.

The McHenry County Traumatic Brain Injury Case Management Program provides a single point of entry via an intake coordinator located at the mental health board who does the initial screening for referral to the case manager or other appropriate resources. The case manager, located at the family services and community mental health center, meets with the client and family in their home or in a hospital or rehabilitation facility. In the immediate aftermath of traumatic injury, families are often unable to find their way to appropriate services. The case manager, who is a registered nurse, assesses both the brain-injured individual and the family support system. The screening and assessment phase of the program includes a variety of options—pychiatric assessment; neuropsychological testing; vision and hearing tests; speech, language, and learning evaluations; and substance abuse evaluations.

The case manager works with the client and family to develop an individual treatment plan describing desired outcomes and steps to achieve identified goals. All plans are focused on helping the brain-injured person live as independently as possible in the community or with his or her family. Goals may be related to going to school, obtaining a job, learning how to use public transportation, controlling anger, or finding friends.

The case manager also links clients with a range of services, including medical rehabilitation, mental health care, transportation, Social Security entitlement benefits, legal assistance, and education or employment services. A discharge plan is developed after treatment goals are met. Adults are generally served by the program for six months to a year, and children and adolescents for 18 months to two years.

Fifty to 60 percent of clients require mental health interventions. Depression, anxiety, and questions of identity are prevalent among brain-injured persons. In addition, some psychiatric disorders increase the risk of head injury, and many of the program's clients have a premorbid history of conditions such as bipolar disorder, impulse disorders, attention-deficit hyperactivity disorder, and substance abuse. Clients with triple disorders—a mood disorder, a substance use disorder, and a cognitive disorder resulting from the injury—require treatment from clinicians with special knowledge and skills, with whom the program has established liaisons.

Case management has only recently been adapted as a service approach for this population. The model in McHenry County is unique because it uses an eight-member multidisciplinary clinical oversight panel to support the case manager and clients and to ensure continuous quality improvement in the program. Panel members include a registered nurse from the county health department, representatives of private-sector inpatient rehabilitation facilities, clinicians from county programs for the developmentally disabled and mentally ill, and staff from the local hospital-based neurotrauma day treatment programs.

The case manager is accountable to the panel, which meets monthly with the client, family, and case manager to approve the initial treatment plan and to recommend services as they become needed. The panel's key role in the program reflects the significant efforts of both the private and public sectors to address shared problems and expand the county's range of services for this population.

In the past five years, the case management program has screened and referred for service 130 individuals. A total of 76 clients have received intensive in-home case management and have completed their treatment plans. They are now able to live independently in the community, or they have significantly enhanced their ability to live successfully with their families. The program has created a continuum of care in the county to provide and coordinate services specifically for individuals with traumatic brain injuries. The continuum includes mental health centers, physicians, lawyers, school districts, and hospitals. The program is supported by local tax dollars and does not charge clients for the case management service. For services from other providers, case managers are often able to negotiate reduced rates.

In 1994 the program created the first resource directory for families and professionals. The directory is updated annually, and more than 1,000 copies have been distributed. About three times a year the program sponsors a seminar at the local community college to educate professionals, consumers, and interested residents about traumatic brain injury. In addition, more than 800 high school driver's education students have attended the program's prevention session on head injury. Also, a consumer advocacy group called Headwinds works closely with the program staff to teach family members and survivors how to keep themselves healthy while adjusting and recovering from a brain injury.

The McHenry County Traumatic Brain Injury Case Management Program provides an excellent example of how the resources of an entire community can be brought together to create a service delivery system that is cohesive, efficient, and cost-effective for a previously unserved population.