Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of Brain Injury Network 03-11-2010
The Board of Directors of the Brain Injury Network approved these positions of public policy:
1. Cognitive Retraining (Also Called Cognitive Therapy or Cognitive Training): Cognitive Retraining is a method by which people after brain injury are taught to restore skills (in such areas as attention, concentration, memory, organization, perception, judgment, and/or problem solving) and also to develop compensatory strategies to cope with or even overcome deficit areas that have arisen due to brain injury. Cognitive retraining is also one aspect of the broader concept, cognitive rehabilitation. Cognitive retraining is the term used by therapists, especially psychologists and neuropsychologists who offer cognitive retraining services. The purpose of cognitive training is to help the patient with a brain injury to restore cognitive or sensory function or at least compensate for loss of function by training or retraining neural pathways in the brain. Cognitive retraining sometimes is also sometimes referred to as cognitive therapy or merely cognitive training.
Recent studies suggest that cognitive therapy helps improve outcome for persons who have sustained acquired brain injury (from tbi, stroke, brain illness, brain tumor, hypoxic injury, etc.) It is claimed that cognitive retraining will help people with brain injuries regain independence and improve their quality of life as well. There is even research suggesting that the outcome will be better if the therapy is started sooner rather than later.
We acknowledge that insurance companies should cover cognitive retraining as a part of a complete program of treatment modalities for persons recovering from acquired brain injury. However, it must also be noted that it has not been proven that cognitive retraining always can restore competency and/or “normal function” to people with brain injury, but improvements to function, however large or small, are welcomed by survivors, especially those with few prospects for a recovery.
Cognitive retraining, as conducted, for example, by neuropsychologists, is very similar in many respects to programs or service delivery offered by speech pathologists and even severely disabled and/or learning disabled special education teachers. We think that limiting reimbursable cognitive retraining to hospital systems and/or psychologists would be a mistake, as many professionals have specialized training in “cognitive retraining”, although it might be called something else such as speech therapy or special education services. So we think these therapies or educational interventions should also be encouraged and adequately covered by insurance.
There is also the cost factor for education or rehabilitation depending on the setting. “Therapies” in medical venues such as hospitals or medical provider offices tend to be far more expensive than those in community settings. How could any medical providers expect that cognitive “treatment” be offered to individual patients in a hospital or other medical setting perhaps for a life time? Yes, they would like the business and certainly have high level training to accomplish their medical programs, but, some individuals with brain injuries will require many years of and perhaps even life-long “cognitive retraining”.
It would be more cost effective for this kind of ongoing, long-term “treatment” or “training” to be delivered initially in a hospital or other medical setting, but with an eventual shift to outpatient settings with a community reintegrative aspect. This would also be more palatable to people with brain injuries who want to leave the hospital environment, normalize their lives as much as possible, and not be permanently under the control and direction of medical or other “institutional” personnel. With generalized social system supports within the community, in addition to medical “cognitive retraining”, this is possible in most cases.
People with brain injuries usually want and need as much retraining as they can afford, so we encourage the inclusion of “cognitive retraining” in services that are covered by insurance. However, since one of the main goals of survivors is return to the community as soon as possible we also encourage the development and support of additional community venues for “cognitive retraining”. Some services similar to “cognitive retraining” are available and performed by schools, individual providers, non-profit entities serving the disability community, state and county departments of health and human services, etc. More could certainly be done by state departments of rehabilitation, county day programs, post-secondary colleges and the like, in the area of cognitive retraining. No one set of providers, for example, rehabilitation hospitals personnel, should have a monopoly on “cognitive retraining” or other training modalities that are akin to cognitive retraining.
So, in conclusion, cognitive retraining should be covered by medical insurance. Cognitive retraining or educational instruction should also be an aspect of a fully comprehensive system of delivery to survivors who wish to move on from hospital settings and back into community life - with community supports where necessary. Hence, “cognitive retraining” (or other name) in local communities in local nonprofits, schools, colleges and the like for people with brain injuries should likewise be encouraged and funded.
2. Community Reintegration (Reintegrative Services): Community Reintegration after Brain Injury is a term used to describe the goal of bringing people with brain injury back to a restored function within the larger society. Community Reintegration also refers to various interventions and strategies that are employed to achieve that goal. Community Reintegration generally occurs past the acute and sub-acute medical care and rehabilitation phases. Psychologists and other trained professionals are ever seeking out the most optimal methods of “community reintegrative programming” to help people with brain injuries get back to the business of normal life.
Community reintegration strategies generally involve the survivor and his or her family and focus on day-to-day functional aspects. Community Reintegration programming does not focus on the medical side, but on the life skills side. Consequently, community reintegration should focus on activities in the community or in the home environment as opposed to in the medical setting environment.
It is the position of the Brain Injury Network that any hospital model project programming for brain injuries include a community reintegrative component. For example, we recommend that all Level I and Level II trauma centers have, as a part of their “comprehensive services for brain injury” true community reintegrative services. These might include such features as help Relearning Tasks such as shopping or getting around town (transit and paratransit); Basic Cognitive Skills (money management, memory devices); Peer Support (meetings, help-line, drop-in center); In-Home Assistive Care (personal grooming and hygiene, house cleaning); Transitioning (back to school environments), and Vocational Training. Also helpful in this phase are would be Service Coordination Information and Referral with community (city and county) departments and non-profits. The focus of this coordination is on link ups to disability benefit programs, disability resources, health and human services, homeless services, housing and legal assistance, low income programs, substance abuse services, (vocational) rehabilitation, and elementary, secondary and post-secondary education opportunities.
We do not necessarily expect hospitals to themselves provide community reintegrative services (in fact, they really are not “medical services” so much as “independent living” services). However, if hospitals claim that they are providing comprehensive services for people with brain injuries, this is an important aspect along the continuum of services which must be addressed and included. The ultimate success of the patient in resuming a more normal life often hinges on whether or not he or she receives these community reintegrative services.
Therefore, we would like to see hospitals offering brain injury acute, subacute and rehabilitation care arrange to coordinate with other providers in the local community so that a smooth, coordinated and continued delivery of optimal reintegrative services is provided to their patients who have brain injuries and require community reintegrative services past the medical interventive stage. Hospitals should not try to pass off clearly medical therapies as “community reintegrative services”. Also, hospital networks which have developed “TBI Model Project” Networks should have “community reintegrative services” in conjunction with other service providers within their “best practice” model. These recommendations apply to anyone with a brain injury including civilians, military personnel (veterans), young adults, adults, and seniors.
3. Organizations or Providers Offering Money to People with Brain Injuries or to the Families of People with Brain Injuries: There is a disturbing trend in certain quarters. People have discovered that it is easy to set up a web site and proactively solicit brain injury survivors and their families with offers of money. For example, a site might suggest that grants are available to families that have a member who is a brain injury survivor. They might suggest that the family will be able to get a grant if they wish to apply for said grant and they ask that the family provide documentation to apply for the grant. However, this is no bargain if the offer amounts to a ruse undertaken for some reason other than actually helping the family or the brain injury survivor secure a cash grant. We wish there would be a way to prevent organizations from dangling such “to good to be true” style offers in the faces of unknowing, and ever-so-trusting and perhaps very desperate survivors and their families.
It is wise to be very careful with offers of money, especially if they are unsolicited. When dealing with any “nonprofit organization” or “foundation” make sure to check out the organization. Doe the organization furnish its IRS Tax ID on its web site? If it doesn’t have such an ID it probably is not a legitimate organization. Is the organization incorporated and if so, in what state? You can check with the state’s secretary of state’s office or attorney general’s office to verify that the “organization” is on the state’s charitable registry. At the very least are you able to ascertain that the entity is legally incorporated and conducting business in the state it claims to operate from? Does the site furnish the name of the principal staff person or people? How long has the organization been operating? What other grants has it given? What is the source of its funding stream?
The site may really actually be a device by which attorneys or patient recruitment companies find potential clients or patients for studies. They may actually be advertising a potential grant in order to secure the names, stories and addresses of potential clients. The information and your business may be what they are really after. There may be no actual intention to provide any grant money. Please watch out. If an offer looks too good to be true, it probably is too good to be true.
In summary, we say to survivors and family caregivers: careful when dealing with online, unsolicited offers of money, grants, etc. Do not send application information to organizations that you don’t know. If the organization does not indicate its tax standing that is a good indicator it is not legitimate. If you are unable to verify the organization via the IRS (in the USA) and the state Secretary of State or Attorney General’s office, do not interact with the site, no matter how sophisticated the site content appears to be.
4. Raising Money to “Promote” Medical Research: A lot of money is raised by nonprofits in the name of medical research. Stating that the purpose of a non-profit organization is to “promote medical research” implies that the organization is actually raising funds for medical research. However, raising money to promote medical research does not mean that money is being raised that will actually be spend on medical research. We want organizations that say their mission is to “promote” brain injury medical research to actually fund brain injury medical research.
5. Sports or Athletic Activities: A Good Mind for Life is more Important than a Trophy: Those of us who have sustained brain injury do not want any children to have brain injuries, just because their parents, fellow students, coaches, schools, and pro athletes, etc. promote and glamorize what really can be quite dangerous sports activities. We recommend that children not engage in sports activity that might lead to brain injury. We believe that contact sports, such as football and rugby, are too dangerous for children. We go so far as to state that boxing is too dangerous. We also believe that children should always wear protective head gear when biking, skiing, and boarding, etc. We also note that particular activities in certain sports are too dangerous for both children and adults. Examples of dangerous activities include head butting in such sports as soccer, football, basketball, etc. We recommend that children never engage in head butting with other children or even with just a ball. Blows to the head are dangerous.
We recognize that playing sports is valuable. Children learn from playing sports. They learn about teamwork, strategy, competitiveness, cooperation, and how to gracefully win or lose by engaging in sport. Athletics and sports also help children develop their coordination skills and help them stay “physically fit”. There is also evidence that exercise in and of itself helps stimulate brain function as well. But surely there are safe sports that children can play in which they can learn the value and fun of organized sport. No dangerous sporting activity is more important than the value of a sharp mind, especially to young people who have their whole lives ahead of them. Being able to think clearly is more important than a winning a game or trophy. So we recommend that society put in more of an effort to stress sports that are less dangerous, especially within the school system. Perhaps someday even adult human beings will disengage from the pursuit of all contact sports that could conceivably injure the minds of their competitors or their own minds. That time of enlightenment is probably a long way off, but we are happy to present that as a potential goal for humanity.