Independent Living
QUESTION:
My brother lives next door to my parents who are elderly. Because he has memory problems, my parents make sure he is home each evening, that he takes his medication, and basically that his safety is maintained (e.g., stove off, back door locked). Although my brother can take care of all his basic activities of daily living, he needs a minimum level of daily supervision. Are there any supervised housing programs for people with traumatic brain injury who do not need nursing care or a "locked ward?" How do I find out about housing options for him?
ANSWER:
The availability of supervised housing programs specifically designed for people with brain injuries differs from state to state. Your state Brain Injury Association should have information on special housing for people with TBI. In addition, you may contact the state government agency that handles housing matters, such as the Housing Development Authority or Community Development Department. Your state may have advocacy agencies that could be of help, such as a Commission for the Rights of People with Disabilities or a Fair Housing "watchdog" agency. Check with the agency responsible for nursing home oversight, such as the Department for the Aging and Rehabilitative Services. This agency may have information on housing that accommodates people with disabilities (as well as the elderly) including group homes and other congregate living that offers supervision and services.
In Virginia, the Department for the Aging and Rehabilitative Services offers lists of nursing homes, group homes, and other congregate living situations, along with guidelines for choosing appropriate housing and an ombudsman program. The Brain Injury Association of Virginia has information on the availability of special housing for people with brain injuries. Housing Opportunities Made Equal (HOME) in Richmond, Virginia advocates for fair housing practices and investigates claims of discrimination. This is just a sampling of the housing resources available in Virginia intended to give you ideas for starting your housing search.
Finding appropriate housing can be the most difficult issue to face after brain injury; success requires creativity. Carefully assess the resident’s abilities and needs; if a suitable housing arrangement does not exist, look for ways to combine services. For example, a group home may offer adequate accommodations, and the home’s social worker may be able to coordinate additional services. A secure condominium may be suitable if a personal assistant provides regular monitoring. Perhaps a nursing home can accommodate a younger resident by coordinating recreational time with local programs. The more avenues you investigate, the more resources you will find.
QUESTION:
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?
ANSWER:
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.
QUESTION:
I am a case manager working mainly with people who have long-term mental illnesses. Some of my clients have participated in a clubhouse for people with mental illnesses, and I’ve seen this type of program for people with mental retardation. Some of my colleagues and I are curious whether the clubhouse model is being used for people with brain injuries. Is it a feasible approach for enhancing independence skills in this population? My organization may be interested in starting a clubhouse for these clients; are there any clubhouses already established for people with brain injuries?
ANSWER:
The original Clubhouse model began nearly 50 years ago by people who experience disability due to psychiatric impairment. Today there are over 300 such programs in 21 countries around the world. The Clubhouse model was subsequently adapted and implemented by people who experience disability following brain injury in the late 1980’s and there are now approximately 10 such programs in operation around the country with more under development. Each Clubhouse operates as part of the community where it resides and is locally owned and operated through its consumers.
A special non-profit organization called Alliance of Ability, helps groups establish Clubhouses operated by and for people who experience disability following brain injury. The alliance also has formed a federation of existing Clubhouses to keep people informed of each others’ development, help Clubhouses meet ICCD (International Center for Clubhouse Development) guidelines that govern all Clubhouse operations around the world, advocate for public and private support of such programs throughout the country, and collect data and publish data on Clubhouse developments and outcomes.
To learn more about Clubhouses operated by and for people who experience disability following brain injury and the alliance, you can contact either:
Harvey Jacobs, 440 Greenwood Avenue, Wyncote, PA 19095, (215) 576-6269, e-mail: harveyjacobs@ibm.net
OR
Cathy DeMello, The Clubhouse, c/o Dayle McIntosh Center, 210 W. Cerritos, Bldg #6, Anaheim, CA 92805, (714) 956-7150, e-mail: demello@flash.net.
QUESTION:
Our son has been discharged from five nursing homes in the past few years due to unmanageable behavior. He has emotional outbursts, is non-cooperative with staff, swears at staff and patients, and has been known to hit other patients. We cannot provide the care he needs at home, nor are we able to manage his behavior. What can we do?
ANSWER:
Behavior changes frequently occur as a result of traumatic brain injury, and so many brain injury programs offer treatment to persons with mild behavior problems. However, when the behavior problems are severe, as in your son’s case, the best setting is a residential program specifically designed to treat individuals with behavior problems following brain injury. These specialized behavioral programs have staff members with expertise in behavior management and the structure and array of services to help the individual learn effective behavior. To find out where these behavioral programs are located, you may wish to contact the Brain Injury Association, Inc. at (202) 296-6443 and/or review the B.I.A. National Directory of Brain Injury Rehabilitation Services. (If at all possible, visit the programs to decide which one of them you believe will be best for your son.)
QUESTION:
I have been referred to my local center for independent living. What can I expect to see there, and how can they help someone with a brain injury?
ANSWER:
The Centers for Independent Living (CIL’s) offer services to people with disabilities who want to maximize self-sufficiency, independence, and community integration. Many CIL’s employ people with disabilities, from peer counselors to administrators, and CIL’s operate by consumer direction. The core services provided at a Center for Independent Living include:
- Information and referral regarding community resources, such as accessible housing, transportation, and affordable services
- Independent living skills training in areas such as money management, mobility, and personal growth. Some can help with finding and hiring personal assistants, too.
- Peer counseling to assist consumers in setting and pursuing goals, and maintaining overall well-being.
- Systems advocacy and individual advocacy to increase public awareness of disability issues and increased opportunities for people with disabilities. The CIL is a good source of information on the Americans with Disabilities Act (ADA).
Centers for Independent Living operate locally, and many services, besides the core activities, are offered based upon local needs. Some CIL’s provide transportation on a limited basis, others provide transportation vouchers to ease the expense. Some CIL’s host special support group meetings, sometimes for people with brain injuries, and some CIL’s offer periodic recreation events.
For people with brain injuries, as well as others with disabilities, the Center for Independent Living is a good source of information on the community and how to live in it as self-sufficiently as possible. The consumer-driven CIL provides people with disabilities the opportunity to help themselves and each other.