Survivor Training and Empowerment Program

Survivor Training and Empowerment Program – S.T.E.P

Pat Breese

On Sept. 30, 1992, the Rehabilitation Services Administration (RSA), awarded the Colorado Department of Social Services (now called the Colorado Department of Human Services), Rehabilitation Services (now called the Division of Vocational Rehabilitation), a 1-year renewable $108,178 grant to develop and implement the Survivor Training and Empowerment Project (S.T.E.P.) described in this article. The grant, in the fourth quarter of its second year of operation, is administered by the Rocky Mountain Regional Brain Injury Center (RMRBIC), which was established in 1990 through grant funds from RSA.

Survivors of traumatic brain injury (TBI) and their families face an extremely complex and potentially confusing array of services, medical professionals, and human service delivery systems. The course of rehabilitation is extensive, sometimes encompassing many years, numerous medical disciplines, social service delivery systems, and bureaucratic entities. The process of rehabilitation and community reintegration following brain injury often requires years of effort and major medical and rehabilitative expenses. Survivors of TBI emerge from the medical milieu concerned about the future but unaware and uniformed of the bureaucratic and medicolegal challenges that lie ahead.

Most survivors of TBI receive timelimited case management services through the insurance carrier responsible for covering the accident or through a facility-based case manager who acts as an internal coordinator of the rehabilitation team. However, once the injured person leaves the facility and insurance monies are depleted, case management (service coordination) either stops or is abruptly transferred to the family. Therefore, upon transfer to the home or community, families, by default, begin to face the reality of providing long-term support and service coordination with limited financial and emotional resources.

Survivors, through extensive hospitalizations and indoctrination into the role of the patient, frequently learn to passively accept medical treatment and rehabilitation options available to them. After discharge from the medical setting, they are thrust into the role of fending for themselves with few supports and are often unable to obtain information on existing services or programs which address their unique needs.

Unfortunately, little preparation is given to people with brain injury and their families to adequately function in their new role as “service coordinator.” Forced to fill the role of self-advocate or service coordinator, survivors and their families learn about available services and procurement of those services in a lengthy piecemeal process that may never reveal the full spectrum of assistance available. The process is a time-consuming, frustrating, and potentially overwhelming endeavor for a family already taxed by the advent of a traumatic event.

Human service delivery systems and state social service systems, which typically assume responsibility for the provision of long-term support and case management, are unable to keep pace with the ever increasing demand for services to a population of Americans who live longer and have more severely disabling conditions. Case management–or service coordination–specifically for people with brain injury has not been developed in most states and is not readily available to these individuals who have difficulty accessing other social service systems. As a result, many survivors of brain injury “fall through the bureaucratic cracks,” are unable to access services available to people with other disabilities, and become exhausted by running the gauntlet of social services before they realize any success for their efforts. The solution to provision of service coordination to people with brain injury relies on two complementary approaches:

* the creation of long-range service coordination or case management through formal systems and

* instruction of individuals in self-advocacy skills to enable them to independently accomplish as much as possible.

Early intervention is critical in setting a course for successful long-term planning and the smooth transition between phases of rehabilitation and community reintegration. Due to the effects of protracted stress in providing for all of the needs of their survivor with little or no assistance from support systems, families may dissolve or develop secondary psychosocial issues. People with brain injury may also develop secondary emotional or substance abuse problems, compounding an already debilitating injury. These secondary disabling conditions, which occur primarily as a result of frustration, isolation, and society’s inability to support survivors of TBI, make the return to maximum independence and productive activity more problematic than necessary. Early involvement with a skilled support person who will help bridge gaps in service and assist in accessing needed services helps to reduce the frustration of continually being denied service and lessens the likelihood of secondary disabilities frequently observed with TBI.

Vocational counselors are aware of the impact of psychosocial disturbances and lengthy unemployment on individual vocational performance and competency. Statistics favor early vocational intervention for individuals with TBI and emphasize the positive effects of rapid return to work. Expedient return to productive activity mitigates the feelings of powerlessness and uselessness frequently occurring after a debilitating illness or injury and maintains the individual’s vocational motivation and confidence. Provision of survivor-directed service coordination supports the efforts of vocational rehabilitation (VR) with early intervention and stabilization of a psychosocial function, thus easing the burden of responsibility on VR counselors to provide case management services and deal with secondary disability. VR counselors often do not have sufficient time to act as both full spectrum case manager and vocational specialist.

Two coordinators who have personally experienced the effects of brain injury were hired to serve under this project. Having a disability similar to those you serve can facilitate the understanding of and adaptation to the disability, and the value of peer counseling has been demonstrated in many other areas of rehabilitation and mental health as well as independent living centers. S.T.E.P. envisions the application of this approach to the direct provision of service coordination for people with brain injury by people with brain injury.

This project seeks to demonstrate the utility of survivor-directed service coordination and self-advocacy training for people with brain injury, as private systems are limited in scope and public systems are either inadequate or nonexistent. Philosophically aligned with current consumer empowerment approaches and responsive to the need for comprehensive service coordination, S.T.E.P. contains two significant components: early intervention service coordination for and training and development of advocacy skills among the recipients of service coordination, thus enabling consumers to gradually assume greater degrees of independence and responsibility.

Survivors of moderate to severe TBI living in the Colorado counties of El Paso and Mesa are the target population for services under this project. These two counties were selected due to their ongoing TBI surveillance projects which allow for the concise collection of data on incidence, outcome, and costs for TBI during the first 18 months post injury. El Paso County, an urban area which includes the city of Colorado Springs, reported 418 cases of head injury, with 338 survivors, in 1988. For the same year, Mesa County, a rural area served by the urban center of Grand Junction, reported 100 cases of head injury, with 66 survivors.

Another goal of the project is to compare costs/experience in the first year post injury for individuals tracked by the surveillance project in El Paso county who receive no case management services with those who receive service coordination under S.T.E.P. At the end of the grant period, the service coordinators will bridge an existing gap in the provision of service coordination among acute care, post acute care, community reintegration, and return to productive activity for 108 people in the two-county area.

S.T.E.P.’s service coordinators may also provide outreach to survivors–located through contacts with service agencies, local head injury support groups, long-term care facilities and independent living centers–who are several years into the community reintegration phase of their rehabilitation process. In these situations, the focus of the service coordinator is primarily information provision and referral to resources and self-advocacy training rather than intensive service coordination.

Early Intervention Service Coordination

S.T.E.P. service coordinators begin working with survivors and their families while they are still hospitalized in acute rehabilitation facilities by participating in staffing and family educational sessions to familiarize themselves and to begin building rapport with the injured individuals, their families, and the rehabilitation team. Both coordinators had offices in acute rehabilitation facilities where they were linked directly with professional staff who reviewed cases with them. Although they are now located in State Division of Rehabilitation offices, they continue to work with professionals from acute rehabilitation facilities in a variety of ways and serve in the dual role of coordinator

Ms. Breese is Program Coordinator for the Colorado Brain Injury Medicaid Waiver Program and Ms. Mikrut is. Executive Director of the Rocky Mountain Regional Brain Injury Center, Denver, Colorado. advocate and mentor to assure recovery from the devastating effects of TBI.

At this stage, the service coordinators will assess each potential client to determine if he/she is eligible for participation in the S.T.E.P. program, as determined by the following criteria:

1. The person must have sustained a documentable moderate to severe TBI which is described as:

* an insult to the brain that may produce a diminished or altered state of consciousness, resulting in impairment of cognitive abilities or physical function or in the disturbance of behavioral or emotional functioning (these impairments may be either temporary or permanent and cause partial or total functional disability or psychological maladjustment);

* a loss of consciousness greater than 30 minutes has occurred;

* a loss of memory for events immediately before or after the accident has occurred with post traumatic amnesia lasting for more than 24 hours;

* an alteration in mental state; or

* an initial Glasgow Coma scale measurement of 13 or less.

2. The individual must reside in El Paso or Mesa County, or one of the adjacent counties.

3. The person with the injury and or their family must desire the services of the peer service coordinator and have made an informed consent to participate.

After the above criteria have been met, an initial meeting is arranged at a mutually convenient time and place. With the permission of the survivor, family members or others interested may participate in meetings. An assessment form, the Functional Outcome Rating Scale (FORS), is used to guide the initial determination of the current level of functioning on a scale of one to five in seven areas of emphasis: Medical; Cognition/Behavior/Emotions; Communication; Mobility; Self-Care; Leisure Time/Recreation/Social; and Vocational/Educational. The need for information and additional supports to enhance function and independence is based upon information obtained through this process. The assessment form includes an open-ended section which provides an opportunity for individuals with brain injury to state personal goals in each of the seven areas. FORS is utilized as a baseline of information to measure progress, as a blueprint for cooperative development of the initial service coordination plan, and as a tool for feedback to encourage the participant to monitor hisher own progress.

From the initial assessment interview the service coordinator determines which community resources can best accomplish the agreed upon goals. If necessary services do not exist within a reasonable distance, the service coordinators become advocates for the development of community-based services and may negotiate arrangements with potential providers of service. Throughout this process of information, referral, advocacy, and monitoring, service coordinators take an instructive role in providing information and teaching advocacy skills, while simultaneously providing ongoing service coordination. Maximum emphasis is placed on the least restrictive environment and highest degree of personal choice.

Self-advocacy Training

The project provides a model and curriculum prepared by and for survivors of TBI to promote self-advocacy This model is used to directly train people with brain injury and their families and is disseminated directly to survivors, their families, and service providers in the states of Colorado, Montana, New Mexico, North Dakota, South Dakota, Utah, and Wyoming. Because the project teaches survivors to manage their own recovery process and subsequent community reintegration, it decreases demands on existing service delivery systems for resources and personnel. The survivors, for the most part, move into and out of the project, thus making room for more survivors to be served. Those individuals who do require ongoing or even lifelong service are enabled to manage more components of their own lives, again reducing the drain on the service coordinator and other social service systems.

Each coordinator works individually with families and survivors in a paced application format of the Self-advocacy for Independent Living (S.A.I.L.) program, covering topics as they become germane to the individual’s life. The service coordinators utilize the S.A.I.L. workbook developed by the Colorado Head Injury Foundation and each recipient of service coordination is provided with a complete S.A.I.L. workbook. In addition, each coordinator assists in the sponsorship and organization of local ongoing S.A.I.L. training workshops for survivors and family members who desire additional training and support. Through a separate project funded by RMRBIC, interested coordinators in the seven-state region are developing a S.A.I.L. training program which will interface with the S.T.E.P. service coordinators in promulgating the self-advocacy model across the region during the second half of the project.

Self-advocacy training is expected to teach skills to the newly injured and their families to enable them to:

* control the type and source of treatment received;

* be free to refuse treatment and/or service;

* have access to all relevant information about their own treatment;

* comprehend the process of appealing any decisions which affect them;

* make informed choices;

* rely on service providers to be catalysts and resources rather than decision makers;

* take reasonable risks and have the right to fail but to take responsibility for change;

* acquire skills that will maximize their independence as they define it; and

* engage in productive activity commensurate with their needs, abilities, and interests.

One of the expected benefits of the self-advocacy training is enhanced utilization of state VR services. Historically, state VR counselors have regarded survivors of TBI as a population which requires more counselor time than other disability groups. Survivors trained in self-advocacy should need far less case management services from the VR counselor, freeing the counselor to concentrate on vocational issues. It is likely that counselors will have a more positive attitude toward serving survivors of TBI if they know that they will not have to spend limited resources of time and money on case management services.

Training of the Service Coordinators

Acknowledging that people with brain injury may need adapted learning methods and pacing, a multifaceted training format was designed with maximum emphasis on “hands on” experience in the mastery of new information. The training curriculum allows for a gradual acquisition of information and skills through formal instruction, internships, and ongoing supervision. Practical application in the internships and through working with clients in supervised settings reinforces material provided in written format and provides an opportunity to apply abstract ideas.

Introductory Training

With input from RMRBIC staff and the Survivor’s Council, a 3-week training curriculum was developed that included topics such as Confidentiality, Documentation, Professional Ethics, Orientation to Vocational Rehabilitation, Orientation to RMRBIC, Policy and Procedures, Budget Management, Stress Management, Counseling Techniques, Family Dynamics, Substance Abuse Issues, Case Management, Community Resource Development, Insurance Issues, SSDI and SSI, Other Financial Resources, and Medical and Rehabilitation Continuum.

Internships

The utilization of internship sites provided the opportunity for service coordinators to take a hands on approach to the acquisition of information from complex systems like social services and Social Security. Each peer service coordinator completed internships within the county in which they would be serving clients, thereby allowing time and the occasion to develop personal contacts with key personnel within specific service delivery systems.

Internship sites were arranged and negotiated with the following entities: county departments of social services, rehabilitation hospitals (inpatient, outpatient, day treatment, nursing services, physical therapy, occupational therapy, speech therapy, psychological services, and substance abuse consultants), independent living centers, Social Security, and state VR. The length of internships varied from 2 days to 6 weeks, depending on the intricacy of systems involved, relevance of the material to the service coordinator’s role, and availability/willingness of professionals to provide training and supervision. In addition, the interns were provided with a listing of expected competencies on which to focus their attention on pertinent topics within each internship site. These competencies ranged from general interpersonal skill development to specific clinical skills of case management or service coordination. The sites were also provided with a copy of these competencies to enable them to tailor the training to the needs of the peer service coordinators. All internship sites that lasted beyond 2 days (all but one) completed a structured evaluation of the service coordinators. Supervision was provided by RMRBIC’s case manager and onsite supervisors. The two peer service coordinators completed training within 9 months of the original grant start date.

Self-Advocacy for Independent Living Training (S.A.I.L.)

As discussed earlier, S.A.I.L. functioned as a component of the S.T.E.P. advocacy training program for participants and was also employed to train the peer service coordinators in April 1993 through a 2-day workshop sponsored by the Colorado Head Injury Foundation. Further instruction was provided in August 1993 and refresher courses are offered annually to assist the coordinators in trouble shooting areas of difficulty and to review areas of concern or project weaknesses.

Ongoing Training Opportunities

Both peer service coordinators have participated in a variety of additional conferences and training sessions throughout the initial 18 months, including housing conferences, brain injury rehabilitation seminars, victim’s assistance training, and interpersonal skill training.

Advisory Bodies

The grant has two primary advisory bodies: the Survivor’s Council and the Service Providers Advisory Board. The Survivor’s Council, which usually meets bimonthly, is comprised of six persons with brain injury who provide guidance to the peer service coordinators and project director in determining the training needs, methods for provision of services, and methods of reaching potential beneficiaries and serve as an appeals board in the event of any dissatisfaction by recipients of S.T.E.P. The Service Providers Advisory Board, which consists of six members, provides input regarding participant selection criteria, outcomes measurement, internal evaluation research design and other matters of technical support. This board is comprised of representatives from the state VR offices, Colorado Department of Health, and Craig Hospital Research Department and meets four times per year via teleconference but provides ongoing technical assistance whenever necessary.

Evaluation/Research Component

The S.T.E.P. project contains both an internal and external evaluation component. The internal evaluation is monitored by the Survivor’s Council, the Service Providers Advisory Board, and the project director and measures variables such as the numbers of clients served, types of services provided, documentation, number of clients returning to work, development of self-advocacy skills in clients, and level of independence attained. The external evaluation is comprised of three separate facets: customer satisfaction surveys, referral source satisfaction surveys, and cost-benefit analysis, which will weigh the cost of intensive service coordination against the long-range benefit of durable improvements in increased levels of independence and productive endeavors. Funding has been allocated for a doctoral level student to consult with the project and complete followup data collection of the project’s participants. Data on the outcome and cost-benefit analysis of the grant will be available before the S.T.E.P. grant expires on September 30,1995.

Issues to Consider Should the Project be Replicated

Several problems arose in the initial phases of project implementation; these issues were primarily centered around an overly ambitious implementation schedule. Initial training for the peer service coordinators was completed in 6 months but absorbed more time than originally allotted for this process. It was imperative, given the nature of TBI, that these coordinators be given adequate time to digest and integrate new job-related information and feel equipped to enter their positions with confidence. The transition to full-time employment combined with relocation to new communities proved to be too stressful for a smooth transition in the 6 month allotted time. To ameliorate some of the difficulties and stresses of the new job, both coordinators were provided with a variety of supportive services, from employee assistance counseling to job coaching. In retrospect, the implementation schedule did not allow for adequate time to transition or train the service coordinators, both of whom had limited mental and physical endurance. Ideally, the training component for a program of this nature should be extended over a year and maintain a flexible approach which could be easily modified if necessary

A second area of related stress for the peer service coordinators came in the relocation to new communities, which necessitated a total disruption of lifestyle and support systems. It was the intent of the authors of the project to hire coordinators from the El Paso and Mesa County areas; however, this did not prove possible and the resulting change for the new employees was much more dramatic than originally anticipated. Should this project be replicated, every effort should be made to mitigate the simultaneous changes required of persons with brain injury who become employed as peer service coordinators.

Another problem area has been the eligibility criteria for the project’s participants, which originally included restrictions on the admission of people who had evidence of previous or ongoing substance abuse issues. After extensive discussion with the Survivor’s Council and Service Providers Advisory Board, consensus was reached regarding which criteria were necessary for the purity of research design and which criteria best served the needs of the population. Overly restrictive criteria limits the pool of available participants. Care must be exercised in determining the selection criteria to adequately adhere to research design and protocol without limiting options for serving people who are in need.

Next, initial marketing of the new program to potential referral sources consumed additional time and was also not included in the original project implementation timeline. Marketing to potential referral sources did not start in earnest until the service coordinators were trained and out in the field. Both coordinators expended considerable effort in contacting and making presentations to hospital personnel, social service systems, and allied mental health workers and working with those people with whom they had become familiar as a result of the internship experience. Additional manpower should be considered prior to replicating this project.

Finally, allocating 15 percent of the project coordinator’s time to provide supervisory oversight, training development, and initial program development was a gross underestimation of the amount of time actually required to begin a program of this nature. In the second year of the grant, 30 percent of the project coordinator’s time is allocated; however, this is probably still inadequate. The S.T.E.P. peer service coordinators commented frequently on their desire for more direct and frequent supervision and often stated they felt “out there alone” dealing with very challenging situations; they desperately needed to feel that assistance was readily available if needed. Adequate supervisory oversight and/or the provision of a direct mentor should be considered as options to providing supervision at a distance, should this project be replicated.

Ms. Breese is Program Coordinator for the Colorado Brain Injury Medicaid Waiver Program and Ms. Mikrut is Executive Director of the Rocky Mountain Regional Brain Injury Center, Denver, Colorado.

COPYRIGHT 1994 U.S. Rehabilitation Services Administration

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