Resources for People with Brain Injury and Their Families
Are there support groups for people with brain injuries? How about for family members? How do I find out about support groups?
The availability of support groups, as well as the types of groups, varies a great deal depending upon where you live. An urban, heavily populated area may have several support groups, whereas a rural area, where the distance between residents is greater, may not have any groups. The make-up and focus of support groups can vary greatly even within the same geographical area. There are support groups for people with brain injuries, family members, and spouses; some groups focus on discussion, others on socializing, and still others focus on community projects in addition to monthly meetings.
To find out if your area has a brain injury support group, contact the state Brain Injury Association. A major focus of state Brain Injury Associations is the development of support group networks. The state office of the Association can refer you to the group nearest you. Be sure to ask about the make-up of the group and its activities. For example, if you are a parent of someone with brain injury, you will benefit from talking with other families. If you are a person with brain injury, look for a group that is for people with brain injuries. Ask yourself if the group offers the level of personal support you need. Will the group be able to offer you useful information? If the group’s focus is socializing, are you interested?
Another resource for information about support groups is a local hospital or rehabilitation center. Many such facilities host support groups. Some of these groups are for patients and their families and are not the most appropriate for the community, as the focus is the acute care stage of recovery. However, many hospitals and rehabilitation centers sponsor community support groups and related activities for people with brain injuries and their families. Begin inquiring at facilities that specialize in brain injury treatment.
I sustained a brain injury in the "prime of life." I have lost my career, my athletic ability, many of my friends and social outlets. Frankly I am very bored and unhappy sitting at home with little to do. How can I become more involved with other people? What can I do to feel more useful?
Get busy. Volunteer. Start a hobby. Get a part-time job -- even if it’s not exactly what you were doing before or even closely related. These may sound like easy answers, or maybe you have heard them from therapists or well-meaning relatives already. But the fact is the isolation is harder on your brain and emotions than you know. Your brain needs stimulation and challenges to repair itself, and you need something to focus on that is completely different from your brain injury and its accompanying losses (don’t worry -- there will be plenty of time to think about that).
Volunteering is good way to start -- choose an environment that interests you. Maybe you have always wanted to be an outdoor ranger. Because of your injury that may not be possible yet, but volunteering in the Park Service’s office would put you around the rangers, and around subjects that interest you. As you challenge your brain more and more you may create other opportunities, and you’ll be in the right place to act on them. It won’t happen over night, and you may get frustrated at not being able to do things as quickly as you used to, but you’ll be surprised at how you improve. Keeping a journal will help you look back and see how little steps become major growth. Our brains are amazing, but we need to give them something to work with.
The more you get out and try new things, enjoy your hobbies, pursue your interests, the more social connections you will make. Go to your favorite places, sit in the park on the weekend, browse downtown, volunteer at church, see a lecture at the library, join the book club, or start one! Investigate support and social groups for people with brain injuries to find emotional support from the only people who truly understand you -- this is crucial!
Our mother sustained a brain injury and is currently being transferred from Intensive Care (ICU) to a hospital room for further treatment. Although my family and I are still somewhat shocked by what has happened, friends are advising us to look toward the future and start locating resources. What should we be doing at this point? How and where can we find out about resources for someone with a brain injury?
It is an unfortunate reality that families in crisis after a head trauma must face a myriad of issues and decisions. In addition to the complex medical information that one must process, a family member must consider difficult financial, legal, and lifestyle issues before they become problems. The family should make sure they are very familiar with the patient’s insurance coverage so that there are no surprises as medical care and rehabilitation progress. It is a good idea to begin working with a case manager at the insurance company as soon as possible to form a collaborative relationship early on. Future medical care coverage may be provided by the insurance company, but if not, the family may have to investigate long-term coverage from government programs such as Social Security, Medicare, Medicaid. Information about government assistance programs should be obtained from the Department for Social Services promptly, as application and approval take months. Legal questions should be answered by an experienced attorney, preferably one who knows head injury. Are there liability issues to consider (in the case of an accident)? Is the patient competent to make decisions or will guardianship or power-of-attorney be necessary? Are there any criminal issues? Legal and financial considerations which are relevant to personal injury and long-term disability must be addressed to prepare for the future. Contact the state Bar Association or the state Brain Injury Association for recommendations and referrals to attorneys and financial specialists. Information specifically tailored for the family dealing with brain injury is crucial to understanding the injury, obtaining the best care, and managing the life changes that occur after brain injury. Information on resources such as specialized rehabilitation programs, practitioners experienced in brain injury treatment, reading materials on brain injury, and support groups is available through the hospital and the state Brain Injury Association.
Our father will need help with many activities of daily living when he returns home from the hospital. He will be using a wheelchair for the first time. The family wants to help my father function as independently as possible. How can we prepare the home for his return? What modifications and assistive devices should we be considering?
There are many considerations to take into account and many resources to utilize when making home-life accommodating to a person with a disability. The first points of contact can be the hospital’s physical and occupational therapists. These professionals can assess the patient’s functional abilities and limitations and make specific suggestions regarding the patient’s adapting to his disability as well as the home accommodating his disability. For example, the therapists will teach the patient how to transfer from bed to wheelchair and advise him on arranging his bedroom to allow for free movement of the wheelchair.
Upon discharge from the hospital, the patient may need some personal assistance at home. This will help him retain the benefits gained by working with therapists daily in the hospital, and it can be the difference between him remaining in his own home and going to a nursing home. Personal assistants can provide a variety of services from nursing care to housekeeping. The client’s need will determine the level of expertise, time commitment, and cost involved. Personal assistants are available through private agencies, in-home nursing services, and state agencies. A good place to start when seeking a personal assistant is the hospital social work department.
Home modifications and assistive devices will help the patient make the most of the gains made in rehabilitation by further facilitating independent functioning. Rehabilitation therapists in the hospital, rehabilitation center, and state rehabilitation agency can offer assistance to the family in determining what home modifications and assistive devices are needed. A secondary resource could be your local Homebuilders Association. The Virginia Assistive Technology System (VATS) offers information on devices and equipment, such as lift-equipped vans, as well as referral to the sources of these items. Contact VATS through the Virginia Department of Aging and Rehabilitative Services: 1-800-552-5019.
After sustaining a traumatic brain injury, my 34-year-old son moved back in with his father and me. He is unemployed and somewhat limited in what he can do (physically and cognitively). Looking at him, you would never know that he is disabled. He could use something to do -- some social, recreational, and productive opportunities. My husband and I could use the "time off," too. How do we find out about programs for him?
Everyone needs something to do, to feel useful, to occupy mind and body. For most of us, our occupations meet these needs, whether we are students, employees, executives, volunteers, or homemakers. Options for people with traumatic brain injuries seeking a suitable occupation include state Vocational Rehabilitation agencies, private vocational counselors and agencies, and programs specifically for people with brain injuries. In Virginia, vocational services are provided by the Virginia Department of Aging and Rehabilitative Services(DARS) and a number of private vocational rehabilitation counselors and agencies. The Rehabilitation Research and Training Center at Virginia Commonwealth University provides supported employment services/job coaching specifically for people with traumatic brain injuries. Specially adapted recreation and social programs are available through many human service or community groups and disability organizations. YMCA’s, 4-H Clubs, Easter Seals, local community centers (for disabled or seniors) and state Brain Injury Associations are a few examples. County and city departments of Parks and Recreation often have programs for people with disabilities, sometimes just for people with brain injuries. Some hospitals and rehabilitation facilities offer recreation and social events -- check with those that specialize in brain injury treatment. Some colleges and universities have special curricula and programs for people with disabilities. For example, Old Dominion University in Norfolk, Virginia offers the CHANCE program which teaches independent living and vocational skills to people with developmental disabilities. While involvement in the above programs will provide respite to the caregiver, additional respite is available through nursing homes and private providers. Private respite, nursing, and personal assistance organizations offer one-to-one, in-home attention. Hospital social workers typically can make referrals for these in-home services. Also, nursing homes often provide respite to families by accepting someone as a "temporary resident" for a short time. Special "camps" for people with disabilities give the family a respite opportunity, as well. For example, Camp Bruce McCoy in Virginia offers one to two weeks of outdoor experiences to people with brain injuries while caregivers take the much needed break.
I understand that information on traumatic brain injuries is maintained on a Registry in my state. How do I find out more about this Registry? I would like to know what information it contains and how data is collected.
Many states have surveillance systems in place to monitor the occurrence of brain injury, as well as other injuries and diseases (e.g., cancer, spinal cord injury). Data collection and management methods differ among states; however, most states share similar purposes for their Registries. Generally, the incidence of brain injury is followed so that states can respond with appropriate services and prevention programs. In Virginia, the Brain Injury Central Registry is mandated by law. Data is collected from all hospitals. Basic demographics, information on the injury’s cause and outcome are submitted. The Registry is maintained by the state, which uses the statistics for program planning. Identifying information also is collected in order to provide outreach. All patients reported to the Registry receive a one-time postcard offering information on further assistance if needed (e.g., support groups, specialists, special education). For information on the Virginia Brain Injury Registry, contact the Virginia Department of Aging Rehabilitative Services: 1-800-552-5019. Other states with registries may offer information through their state Brain Injury Associations, Department of Health, or Agency on Developmental Disabilities.
I am a person with traumatic brain injury, and I would like to communicate with others like me. What are the on-line resources for people with brain injuries?
People who have had a brain injury often feel isolated within their social network because of changes in abilities and circumstances. Attentional difficulties, a very common brain injury effect, can make trying to carry on a conversation frustrating. The individual may also feel self-conscious about other difficulties such as forgetting names or taking longer to do things. Communicating by means of a computer can help overcome these barriers and lessen the individual’s sense of isolation.
Fortunately, the number of Web sites linking persons with brain injury has been steadily growing in the past few years. Links listed below can get you started. This site provides links to various Traumatic Brain Injury Associations in addition to links to Web pages for brain injury survivors and their families. The NRC for TBI also supports a bulletin board system with a chat room feature. This site allows you to post messages or carry on real-time conversations on topics of similar concern or interest.
The official Brain Injury Association offers contact information for Brain Injury Associations by state as well as links to those with web pages.
The Perspectives Network offers a database of brain injury survivor support groups searchable by state. Also provided is information about the Peer Communication Networks (PCN) which utilizes the Letter Mail System for communication within specific groups (e.g., adults, children, parents).
I facilitate a support group for people with brain injuries and their families. I am a family member myself with no professional training in group therapy or psychology. I need advice on how to handle the suicide of a group member. Should I address the loss of this person in group? If so, how?
Brain injury survivors and their families suffer from so many losses already, the loss of a fellow group member from suicide needs to be acknowledged, explored, and grieved. Group members may have feelings that include anger, pity, sadness or empathy, and they all can be discussed. As a group leader, your job is to allow each member to share, without letting other members cut off someone whose point of view is different from their own. Remember, that as with any strong feeling, your goal as leader is not to fix it, but to allow it to come out. Taking time before the group to sort out your own responses will help you to guide other members in their sharing. If you really don’t feel comfortable leading this discussion, calling a suicide hot line or counseling center for suggestions, information, or help would be a good idea.
You may find that there are other members in the group who have considered suicide. The huge life changes and loss that can accompany brain injury may create the social alienation that can lead to suicide. Biological changes in the brain may leave the survivor more prone to depression. In raising the issue of suicide, and being open to allowing someone to say that they have considered suicide, you can lead the discussion to the underlying feelings that may cause someone to make that choice. Working on those feelings can be the first step away from choosing suicide. Allowing your group to work through this issue will create a more open and honest atmosphere, where members feel they can really get and give the support they need.
What are the main resources that families of people with brain injuries and/or individuals with brain injuries themselves should investigate after hospitalization is over with? What is a good "game plan" for locating brain injury resources in the community?
As brain injuries generally result in complex problems, the game plan for both survivor and family will be necessarily multifaceted. There are medical, rehabilitation, financial, insurance, housing, and employment considerations as well as the emotional needs of every family member. This can be overwhelming as many issues will have to be handled simultaneously. For family members with multiple responsibilities this can be very challenging. For many, seeking support from a support group organized by the state chapter of the Brain Injury Association can be a good place to start. There are many well-formed local groups that provide immediate emotional support and vital information about resources in the community that may be needed for ongoing rehabilitation, counseling, financial assistance, social opportunities, etc. The hospital social worker should be able to connect you with the local support group. If there is no nearby local support group, contact the Brain Injury Association (1-800-444-6443 or 202-296-6443), and they will send you information as well as put you in touch with the state chapter which can offer information and local contacts. Most state chapters have published a family and/or survivor handbook which are available for free or a nominal charge. In addition to the support group, nearby outpatient or inpatient rehabilitation programs are a good source of information regarding local resources. At the time of discharge you should be informed about these services and whether your insurance will cover them. Be sure to ask if case management services are available through your insurance program, state Vocational Rehabilitation or Medicaid program as these services can facilitate the next stages of care.
Vital to the survivor’s and family’s future is financial security. Loss of employment income or excessive medical expenses can be catastrophic to a family whether the survivor is a child or an adult. One of the first steps to take is having the survivor apply for social security disability benefits (SSDI) if he worked, or if he is a child or otherwise indigent, he applies for Supplemental Security Income (SSI). If the survivor’s brain injury resulted in severe disability such that it prevents her from performing any work, and the disability is expected to last at least 12 months, she may qualify for these benefits. The telephone number is in the book under US Government/Social Security Administration. It is well known that most people are denied in the initial application for benefits, and as brain injury is still a misunderstood disability, the denial rate is even higher among this population. If denied, you can appeal, but this first appeal is also typically denied, at which point you will likely wait up to a year or more for your next request for appeal to be heard by an administrative law judge. Many people get an attorney at this point, and often they win their case. There is an alternative. In many states, non-lawyer representatives take cases at the initial and reconsideration levels and are successful at winning a case at these stages. Ask around in your community or use your yellow pages to find someone who can help expedite your claim. (See other FAQ’s for more information on obtaining help early when applying for or appealing disability benefits.)
Remember that when you qualify for SSDI you must wait 2 years to qualify for Medicare. If you qualify for SSI you immediately qualify for your state’s Medicaid program which can help in covering rehabilitation services.
As employment can be critical to one’s financial security, it will be important for survivors to contact their state vocational rehabilitation agency unless their employer sponsors private rehabilitation. This agency’s definition of disability is less stringent but it requires a few months to determine a person’s eligibility. The goal of these services is to help the individual obtain suitable work, taking abilities and disabilities into consideration. Re-training and education are often part of the rehabilitation plan. Nowadays, state vocational rehabilitation agencies are doing a better job of serving persons with brain injuries including the provision of supported employment services which can make the difference between someone becoming employed or not.
Applying for or receiving social security and obtaining vocational rehabilitation services are not mutually exclusive. They can occur simultaneously and doing so may help the survivor avoid falling through a crack in the system.
There are lots of extenuating circumstances such as worker’s compensation, Veteran’s benefits, private disability insurance etc. that my impact your situation. Generally, the hospital social worker will help you pursue these avenues if they apply.
One resource you won’t want to overlook in your game plan is the Center for Independent Living (CIL). Every state has several, and one may be near you. These centers offer peer support and classes in independence such as money management, etc. They also serve as clearinghouses for accessible/affordable housing, transportation, home modification, assistive technology, support groups, etc. If you can’t find your CIL in the telephone book, call your local department of vocational rehabilitation (under state government) for the number of the nearest center. (See FAQ on CIL’s under Independent Living).
It is also helpful to network with other disability groups, as they are aware of excellent resources in your community such as housing, long-term financial planning, guardianship, recreation opportunities, funding opportunities, etc. There are organizations for survivors of stroke, brain tumors, and epilepsy, for example, that may have information relevant to you.
Once again, all of this can be overwhelming at a time when you are grieving. As a final suggestion for your game plan, it may be helpful for you to schedule time to rejuvenate or for counseling to help you to adjust to the many new demands and changes of being a survivor or a family member. There is a great deal of evidence that points to family support as a critical component in the successful outcome of brain injury for all, therefore it is vital that families get the support they need to be helpful.