State trust funds fill gaps in services for traumatic brain injury survivors
Here’s how advocacy groups partnered to provide long-term solutions
Traumatic brain injuries (TBI) often leave survivors with long-term cognitive, emotional, behavioral, and physical disabilities that create such a wide range of needs that no one payer or funding source could possibly meet them. Advocacy groups, survivors, and their families in 10 states — frustrated by gaps in services for TBI survivors — have successfully spearheaded grass-roots efforts that resulted in brain injury trust funds.
Those trusts are funded by traffic violation and drunk driving fines and provide a variety of grants and services that benefit TBI survivors and their families. In addition, the legislative process creates secondary gains that benefit case managers and their clients. (A complete list of states with brain injury trust funds appears on p. 40.)
"In Georgia, we had to have a referendum passed to establish the brain injury trust fund," notes LuRae Ahrendt, RN, CRRN, CCM, a nurse consultant with Ahrendt Rehabilitation in Norcross, GA, and chair of the executive board for the Brain Injury Association of Georgia in Atlanta.
"The massive effort that took on the part of survivors, their families, nonprofit disability organizations, and rehabilitation providers established support networks that didn’t exist before. This is the real essence of rehabilitation and should be important to all case managers," says Ahrendt.
A capitol idea
Case managers and others in the disability community who have banded together to establish brain injury trust funds in their states often reap more than one expected gain from the process. "Having a cause to do battle for also gives some TBI survivors the push they need to re-enter the community," Ahrendt says. "I had one client, who had been very reticent to get involved in community activities after his injuries, actually bulldoze his way through the doors of the Georgia state capitol building during the effort to get the referendum passed."
The legislative process also gives case managers and disability activists the opportunity to educate legislators about the long-term needs of brain and spinal cord injury survivors. "I think any time we have an opportunity to educate individuals about living with a disability, we should take it because we never know what long-term benefits may come as a result," Ahrendt says.
"By working to pass the referendum, we have heightened the awareness of legislators in Georgia about the needs of TBI survivors and created a legislative legacy that we will utilize for many years to come," she notes. "It has also caused an attitudinal shift by making legislators and others in the private sector aware that TBI survivors have the potential to be maximally independent with appropriate support. What is often communicated in the legislative process is a sense of possibility and not a sense that we expect the state to take care of people with disabilities."
Most states with brain injury trust funds provide survivors with community service coordinators who provide long-term case management services that support the survivor and family members long after the provider case manager and payer case manager are out of the picture.
"We serve more than 1,200 clients a year through the resource coordination program to individuals with brain and spinal cord injuries," says Priest. "Service coordinators serve 25 to 28 families a month, but we don’t close a case unless a client specifically requests us to, a client dies, or a client moves out of state. We are always available to help that patient at any time.
"Typically, upon referral, we spend a great deal of time identifying needs and developing resources to meet those needs. After a few weeks, the amount of effort a coordinator spends on the client decreases from eight hours a week to several minutes until a time when a coordinator may only hear from a client once in every three of four months."
The contract that the state of Tennessee Traumatic Brain Injury Program signed with the Brain Injury Association of the Mid-South (BIA) in Memphis, TN, mandated that the community service coordinator serve a minimum of 25 clients annually. In reality, Carolyn S. Chambers, MS, CRC, the community service coordinator with BIA of the Mid-South currently has 200 active files. "There are files I have open for people who don’t contact me for months, but who still occasionally have problems," she notes. "Sometimes, survivors do well for years and then run up against an issue they need my help with."
Chambers remembers a 20-year TBI survivor who had put herself through a PhD program while raising her child as a single parent. "She’s an educator, and everything was going smoothly until she ran into a problem with her employer, who didn’t understand her special needs," Chambers says. "The problem is a TBI survivor often looks normal. To an outsider, there are no visible signs of their unique disabilities."
In this case, the woman was working as a college professor and was having difficulty teaching classes late in the day as well as adjusting to changes in class schedules, which were 40 minutes long some days and 120 minutes long on other days. "She would get confused about when to let her class out. Sometimes, she dismissed students early and other times she kept them late."
In addition, the client was uncomfortable sharing office space with another professor. "She was easily distracted and had trouble concentrating when she shared space with another professor," Chambers explains.
She met with the woman’s department head to work out a more reasonable class schedule and office sharing arrangement. "We agreed to a schedule that allowed her to share both a computer and office space with another professor but schedule their respective office hours so that they never were in the office at the same time," she says. "It’s often a matter of education. Few people without a personal experience with TBI understand the physical, emotional, and cognitive challenges these people face."
A wake-up call
Another of Chambers’ clients had successfully completed her rehabilitation and was holding down a full-time job, but she was having difficulty waking up in the morning and was in danger of losing the job. "She was very worried. She told me she had placed alarm clocks in every room in her house but simply couldn’t wake up on time in the morning. A brain stem injury doesn’t heal in a nice, predictable manner like a broken femur," says Chambers.
It took Chambers several telephone calls to local home health agencies and companion services before she found one willing to send someone to the client’s house with a house key to wake the client and stay long enough to make sure the woman was dressed and ready for work.
It’s not unusual to find TBI survivors who run into difficulties just when they appear to be fully recovered, cautions Chambers. "Almost every brain injury survivor reaches a point where they think they don’t need their medications anymore, and the results can be disastrous," she says. "I get lots of calls from clients who end up in jail because they’ve stopped their medications and end up in a fight, or get picked up for drunk and disorderly conduct."
Think long term
In those cases, Chambers says the case manager has two jobs. "First, you have to explain to law enforcement officers that things may not be what they appear," she notes. "Second, you have to convince the client to go back on their medications." The unpredictable nature of TBI makes it mandatory for case managers to contact clients for follow-up, she says.
"I review client files on a quarterly basis, even those who don’t have active, ongoing needs. Sometimes, you find that they’re doing well and haven’t called because they don’t need help at the moment. Other times, you call and the client really needs you but has lost your phone number or can’t remember your name. They know someone helped them, but they can’t remember who," she says.
Ahrendt agrees and adds that case managers must educate survivors and their families about the long-term and unpredictable nature of TBI. "Not enough emphasis is placed on looking at the long-range needs of TBI survivors," she says. "It’s a key role of the case manager to educate the survivor and family well beyond what they perceive as their immediate needs. Families should expect both internal and external case managers to provide them with that information."
In Florida, the trust fund also provides for community service coordinators and nurse case managers for injured children.
"Children need to be actively case managed for a longer period of time than most adult TBI survivors," says Bonnie G. Wirth, RN, CRRN, the community health nursing consultant for Children’s Medical Services in the Department of Health in Tallahassee, who supervises the 11 nurse case managers who work with brain and spinal cord injured children in Florida.
"The injury impacts the child differently at each developmental stage," she says. "There is a great deal of work that needs to be done with families and school systems. If we can get children back to school and placed at an appropriate level so that they can be successful, it’s the best thing we can do for the child and the family. If the child is back in school, the parents get a needed break but also an opportunity to go back to work full or part time."
Community service coordinators must be particularly resourceful. Most states with community service coordinators establish strong relationships with local nonprofit agencies, churches, and advocacy groups. Even then, some service coordinators cast their nets wide to help meet their clients’ needs.
Most state trust funds provide little money for direct services to TBI survivors, which means that community service coordinators must be creative and flexible. (For a look at how three state trust fund programs gather and spend their money, see p. 41.)
The community steps in
Charlie D. Priest, executive director of the Alabama Head Injury Foundation in Birming ham, recalls one Alabama community service coordinator who convinced the local Automobile Dealer’s Association to donate an accessible van for a TBI survivor. "The van was awarded to the survivor and his family during a minor league baseball game. The Automobile Dealer’s Associa tion received some good public relations mileage out of it."
You never have enough money to meet all of a client’s needs, agrees Wirth. "I really applaud our community service coordinators who often go out into the community and persuade the local Rotary Club or Kiwanis to assist a client with home modifications or to donate items."
Sometimes community service coordinators approach private corporations for donations, she adds. "One company purchased tricycles whose pedals could be operated by hand for children with spinal cord injuries. Those are things that go beyond meeting basic needs and impact quality of life."
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