FLORIDA SPINAL CORD INJURY RESOURCE CENTER

FLORIDA SPINAL CORD INJURY
RESOURCE CENTER
Located at the
Tampa General Rehabilitation Center
Davis Island
P.O. Box 1289 Room R212A
Tampa, FL 33601
Statewide Toll Free: 1-800-995-8544
Local Phone: 813-844-4286
FAX: 813-844-4322
Web Site: www.flspinalcord.us
E-Mail: [email protected]
Patient’s Bill of Rights
The American Hospital Association’s Committee on Health
Care prepared the following definition of a patient’s rights and
distributed it to member hospitals across the nation. By knowing
and exercising these rights, patients and their families are offered
more control during the hospitalization stage. Each patient has the
right to:
1. Considerate and respectful care:
2. Obtain from physicians complete and current information
concerning his or her diagnosis, treatment and prognosis in
terms the patient can be reasonably expected to understand;
3. Receive from the physician information necessary to give
informed consent prior to the start of any procedure and/or
treatment;
4. Refuse treatment to the extent permitted by law; and be in formed of the medical consequences of any action;
5. Every consideration of his or her privacy concerning his/her
own medical care program;
6. Expect that all communications and records pertaining to care
should be treated as confidential;
7. Expect that within its capacity a hospital must make reason able response to the request of the patient for services;
8. Obtain information as to any relationship of the hospital to
other health care and educational institutions insofar as
his/her care is concerned;
9. Be advised if the hospital proposes to engage in or perform
human experimentation affecting care or treatment;
10.Expect reasonable continuity of care;
11.Examine and receive an explanation of the bill regardless of
source of payment;
12.Know what hospital rules and regulations apply to patient care.
The Florida Spinal Cord Injury Resource Center’s
A Family and Survivor’s Guide to Spinal Cord Injury
The Florida Spinal Cord Injury Resource Center is sponsored through a grant
with the Florida Department of Health, Brain and Spinal Cord Injury Program.
The contract is administrated by The Florida Alliance for Assistive Services
and Technology.
Florida Spinal Cord Injury Resource Center – 1
WHAT IS SPINAL CORD INJURY?
How the Human Spinal Cord Works
The human spinal cord operates much like a telephone line,
relaying messages from the brain to the rest of the body.
Causes of Spinal Cord Injury
Spinal cord injuries are caused by bruising, crushing, or tearing
of the delicate cord tissue. Swelling of the spinal cord after the
injury can cause even more damage.
Illustration 1: Normal Function of the Spinal Cord
The Impact of Spinal Cord Injuries
After an injury, the “messages” sent between the brain and the
other parts of the body no longer flow through the damaged area.
Many times the functions of the body which are located above the
injury point will continue to work properly without impairment.
However, the area below the injury point will be impaired to some
degree, which will include any combination of the following: motor
deficit, sensory deficit, initial breathing difficulty, and/or bowel and
bladder dysfunction.
Illustration 2: Spinal Cord Function After Injury
Accepted Truths About Spinal Cord
Injuries to the spinal cord are irreversible.
No two spinal cord injuries are exactly alike.
The higher the level of injury to the spinal cord, the greater the disability.
Whatever the level of injury, it is important for the spinal cord injury
survivor to work with his or her doctors, nurses, and therapists to
maximize the functions that remain.
Complete vs. Incomplete
Spinal cord injuries are classified as complete or incomplete. When an injury is called complete,
it means the feeling and control of movement below the point of injury are totally lost. In an
incomplete injury, there may be some feeling and control of movement below the point of
injury.
In some cases, the functions that are missing in the earliest stages of
the injury may return when the body stabilizes.
2 – A Family and Survivor’s Guide to Spinal Cord Injury
LEVELS OF FUNCTION
Letters and numbers are used to
identify the specific area of the spinal
cord that is involved in the injury. For
example, an injury at C-4 means the
injury occurred at the fourth vertebrae
in the cervical region.
There are four sections of the spine –
the Cervical, Thoracic, Lumbar, and
Sacral. Spinal cord injuries that result
in quadriplegia and paraplegia are
located in the top three sections.
A loss of function is associated with
each level of injury. The higher the
point of injury the more function is lost.
C – Level Function
C-1 to C-3: Limited movement of head
and neck; dependent on ventilator;
difficulty talking.
C-3 to C-4: Usually has head and neck
control and the ability to shrug
shoulders; usually adjusts to breathing
without ventilator; able to talk.
C-5: Typically has head and neck
control; full shoulder control; can bend
elbows; turn palms face up; can eat,
drink, wash face, brush teeth, and
shave by him/herself; can manage own
healthcare; may push own wheelchair;
Illustration 3: Levels of the Spine
driving may be possible.
C-6: Movement in head, neck, shoulders, arms, and wrists; can shrug shoulders, bend elbows,
turn palms up and down and extend wrists; manage hygiene needs; perform light
housekeeping duties; can manage and perform own healthcare; turn in bed; can transfer from
chair to other surface with help from adaptive aids; can use a manual wheelchair.
C-7: Similar abilities as C-6 level with greater ease; added ability to straighten elbows; needs
fewer adaptive aids to perform all functions.
Florida Spinal Cord Injury Resource Center – 3
T-Level Function
C-8 to T-1: Added strength and precision of fingers that result in near
natural function; can live independently without assistive devices for
hygiene needs and personal health care; can transfer from wheelchair
to other surface without the use of adaptive aids.
T-2 to T-6: Normal function in head, neck, shoulders, arms, hands,
and fingers; increased use of rib and chest muscles; totally
independent with all activities; few may have limited walking
capability.
T-7 to T-12: Similar to T-2 to T-6 function with added function and control; has improved cough
effectiveness.
L-Level Function
L-1 to L-5: Additional return of motor movement in the hips and
knees; walking can be a viable function with assistive devices.
Wheelchair Basketball:
Levels T-7 and below
Quad Rugby: Levels C-5 to C-7
Power Soccer: Any Electric Chair Users
Illustration 4: Sports at Different Injury and Functional Levels
4 – A Family and Survivor’s Guide to Spinal Cord Injury
THE TEAM APPROACH TO TREATING SPINAL CORD
INJURY
Most hospitals and rehabilitation centers use a team approach in the care of spinal cord injury
survivors. Each member for the team has a specific and important job. Members of the
treatment team should meet with the family regularly, as they are the family’s main resource
for information and assistance. Don’t be afraid to approach them with your concerns.
Illustration 5: Medical Team Involved in Spinal Cord Injury Treatment
Questions to Ask This Team
Am I being turned enough, so I don’t develop a pressure sore?
Are my feelings toward this injury normal?
How will my diet need to be adjusted with this injury?
How will my sexuality be impacted by this injury?
Florida Spinal Cord Injury Resource Center – 5
Supportive Staff
Illustration 6: Supportive Staff Involved in Spinal Cord Injury Treatment
Question to Ask This Team
How will my home need to be modified for wheelchair use?
What financial benefits are appropriate for me?
What goals should I be setting?
Who in the community can help me maintain a high quality of life?
Where can I get additional information about spinal cord injury?
What kind of jobs can I get now?
6 – A Family and Survivor’s Guide to Spinal Cord Injury
Therapists
Illustration 7: Therapists Often Involved in Spinal Cord Injury Treatment
Questions to Ask This Team
What are the primary respiratory problems associated with a spinal cord injury at my level?
Is there an outlet for my competitive nature?
How will I brush my teeth, reach the stove, get to my second floor apartment?
How do I get from my chair into the bath tub with or without someone else’s help?
What wheelchair will work best for me?
What is the best cushion?
Why is washing my own clothes so important?
How do I perform a pressure relief?
Florida Spinal Cord Injury Resource Center – 7
STAGES OF SPINAL CORD INJURY MEDICAL CARE
The medical treatment of spinal cord injury is divided into two phases – acute and
rehabilitation. The acute phase begins with the arrival of the emergency medical services team
at the accident scene and continues with admission into the hospital. The rehabilitation phase
begins when the survivor is deemed medically ready to strive for his or her independence.
The Acute Phase
During the first few days after a spinal cord injury, doctors will
try to prevent further damage to the spinal cord. Such damage
can be caused by swelling in the spinal cord region.
These first days of the acute phase are often characterized by a
condition called spinal shock. Until this period is over, it is
difficult to predict how severely the survivor will be impaired because some recovery of function
may occur. Also, complications beyond the cord injury may be present, and these
complications may slow down the time of prediction. For example, most spinal cord injuries
result from car accidents. Therefore, it’s common that a person who has sustained a spinal
cord injury has also sustained other broken bones, bruising, or even a brain injury.
A family has little say immediately after the injury when deciding which acute center to
transport their loved one because timing is very important. Often the faster the person can get
treatment, the better his or her chances are of having less impairment. All spinal cord injured
people are sent to the closest Brain and Spinal Cord Injury Program designated acute care
hospital. These medical centers are the most prepared to handle such a delicate injury.
Spinal shock occurs when a person’s reflexes stop functioning.
BSCIP Accreditation for Acute Care Facilities
This accreditation provides acute care and inpatient and outpatient rehabilitation care,
as well as other services. For a facility to become a Brain and Spinal Cord Injury
Program facility, it is required to maintain the highest level of expertise and experience
to address the medical, rehabilitation, and physiological needs of individuals who sustain
traumatic brain and spinal cord injuries. A minimum number of new admissions is
required to maintain the expertise of professional staff and level of comprehensive
program required.
Brain and Spinal Cord Injury Program State Designated Acute Care Hospitals
Currently, there are 10 BSCIP state designated acute care facilities in Florida. All of
these facilities are also CARF accredited.
Baptist Hospital
1000 West Moreno Street / Pensacola, FL 32501-7500 / Phone: 850-434-4011
Web site: www.bhcpns.org/Home
8 – A Family and Survivor’s Guide to Spinal Cord Injury
Halifax Medical Center
303 North Clyde Morris Boulevard / Daytona Beach, FL 32215 / Phone: 904-254-4000
Web site: www.hfch.org/hmc
Jackson Memorial Hospital
1611 Northwest 12th Avenue / Miami, FL 33136-1094 / Phone: 305-585-1111
Web site: www.um-jmh.org
Memorial Regional Hospital
3501 Johnson Street / Hollywood, FL 33021 / Phone: 954-987-2020
Web site: www.memorialregional.com
Shands Hospital at the University of Florida
Box 1-306 JHMHC / Gainesville, FL 32610 / Phone: 352-265-0002 / Toll-Free: 1-800749-7424
Web site: www.shands.org
Shands Jacksonville
655 West 8th Street / Jacksonville, FL 32209 / Phone: 904-244-0411 / Toll-Free: 800749-7424
Web site: www.shandsjacksonville.org
St. Mary's Medical Center
901 45th Street / West Palm Beach, FL 33407-2495 / Phone: 561-844-6300
Web site: www.stmarysmc.com
Tallahassee Memorial Healthcare
1300 Miccosukee Road / Tallahassee, FL 32308 / Phone: 850-431-1155
Web site: www.tmh.org
Tampa General Hospital
Mailing Address: P.O. Box 1289 / Tampa, FL 33601
Physical Address: 2 Columbia Drive / Tampa, FL 33606
Phone: 813-844-7000 / Web site: www.tgh.org
West Florida Regional Medical Center
8383 North Davis Highway / Pensacola, FL 32523 / Phone: 850-494-4677
Web site: www.westfloridahospital.com
The Rehabilitation Phase
The rehabilitation phase helps a survivor achieve the greatest degree of function and
independence in his or her home and community by having a plan designed according to his or
her unique needs.
Ideally, rehabilitation will take place in a designated spinal cord injury treatment center which
has been approved and accredited by both the Florida Brain and Spinal Cord Injury Program
and the Commission on Accreditation of Rehabilitation Facilities.
Florida Spinal Cord Injury Resource Center – 9
Illustration 8: CARF and BSCIP Logos
Rehabilitation Keys to Success
If a survivor masters this list, he or she will be better prepared to meet the functional
goals set during the rehabilitation process.
•
•
•
•
•
Understand the effects of spinal cord injury and the details of your care
Become as independent as possible in the activities of daily living, like bathing,
grooming, eating, and transferring from wheelchair to another surface.
Learn and accept lifestyle, recreational, sexual, and housing options
Be able to instruct care givers to assist in activities of daily living, if unable to
do them yourself
Be prepared to begin vocational rehabilitation soon after leaving the
rehabilitation facility.
The successful rehabilitation of any person who survives a spinal cord
injury depends upon the strength of the rehabilitation team and the
motivation of the survivor.
Choosing a Rehabilitation Center That’s Right for You
The following list is a set of questions you could ask that may help you decide on the right
rehabilitation center for you and your loved one.
• Is the SCI program accredited by the Commission on the Accreditation of Rehabilitation
Facilities (CARF), the Joint Commission on Accreditation of Healthcare Organizations
(JCAHO), and (in Florida) the Brain and Spinal Cord Injury Program (BSCIP)?
• Will the treatment team develop a rehabilitation plan with both short and long term
goals?
• Will an experienced case manager be assigned to help family members obtain medical
payments and other benefits from public and private insurance?
• Will a team member be assigned to coordinate treatment and act as a contact for staff
and family members?
• Is the physician in charge a Physiatrist? If not, what credentials does he/she have? How
long has the physician in charge been directing programs specializing in SCI?
• Is there physician coverage seven days a week? Twenty-four hours a day?
• Do the regular nursing staff and other specialists responsible for providing treatment in
the SCI program have specific training in treating SCI? Is the nursing staff employed by
the hospital or employed through an outside agency?
10 – A Family and Survivor’s Guide to Spinal Cord Injury
•
•
•
•
•
•
•
•
•
•
•
Does the program ensure the availability of rehabilitation nursing and respiratory care
on a twenty-four hour basis?
Are there consultants available at the facility or nearby medical centers? These should
include neurosurgery, neurology, urology, orthopedics, plastic surgery, neuropsychology,
internal medicine, gynecology, speech pathology, pulmonary medicine, general surgery
and psychiatry.
How often and for how long each day will participants get treatment by specialists such
as occupational and physical therapists? Treatment should be no less then three hours
per day.
Are other specialties such as driver education, rehabilitation engineering, chaplaincy,
and therapeutic recreation available, if needed?
Are activities planned for SCI program participants on weekends and evenings?
How much time is spent teaching SCI program participants and their families about
sexuality, bowel and bladder care, skin care and other essential self-care activities?
Does the SCI program offer training in the management and hiring of personal care
assistants? If so, how much time is spent by staff on this topic?
What types and how many hours of psychosocial services are available? These should
include peer support, individual and group psychotherapy, couples, vocational and
substance abuse counseling.
Does the facility offer sexuality and fertility counseling?
Do facility policies encourage family members including siblings regardless of age, to
participate in rehabilitation programs?
Will staff members develop a formal discharge plan with program participants and their
families?
Brain and Spinal Cord Injury Program State Designated Rehabilitation Centers
Currently, there are eight BSCIP designated facilities in Florida, and each is also
accredited by CARF.
Brooks Rehabilitation Hospital
3599 University Boulevard, South / Jacksonville, FL 32216-0425 / Phone: 904-858-7602
Web site: www.brookshealth.org
Healthsouth Rehabilitation Hospital of Tallahassee
1675 Riggins Road / Tallahassee, FL 32308 / Phone: 850-656-4800
Web site: www.healthsouth.com
Healthsouth Sea Pines Rehabilitation Hospital
101 East Florida Avenue / Melbourne, FL 32901 / Phone: 321-984-4600
Web site: www.healthsouth.com
Jackson Memorial Rehabilitation Center
1611 Northwest 12th Avenue / Miami, FL 33136-1005 / Phone: 305-585-1111
Web site: www.um-jmh.org
Pinecrest Rehabilitation Hospital
5360 Linton Boulevard / Delray Beach, FL 33484-0653 / Phone: 561-495-0400
Web site: www.pinecrestrehab.com
Florida Spinal Cord Injury Resource Center – 11
Shands Rehabilitation Hospital
8900 Northwest 39th Avenue / Gainesville, FL 32606-0562 / Phone: 352-265-8000
Web site: www.shands.org
Tampa General Rehabilitation Center
Mailing Address: P.O. Box 1289 / Tampa, FL 33601
Physical Address: 2 Columbia Drive / Tampa, FL 33606
Phone: 813-844-7000
Web site: www.tgh.org
West Florida Rehabilitation Institute
8383 North Davis Highway / Pensacola, FL 32523 / Phone: 850-494-4000
Web site: www.westfloridahospital.com
Illustration 9: Scenes from Rehabilitation
12 – A Family and Survivor’s Guide to Spinal Cord Injury
COMPLICATIONS OF SPINAL CORD INJURY
It is important all spinal cord injury survivors know how to recognize these complications. Early
medical treatment can prevent or minimize the consequences.
Bladder Control
Bladder control can be limited or completely lacking
due to the injury. This means that people with
spinal cord injury may not feel the “urge” to urinate
when their bladder is full. What happens is one of
two results. First, the person can have a spastic
bladder, meaning you don’t know when or if the
bladder will empty. This is most common when the
injury occurs above T-12 level. The other result is
called flaccid bladder. This occurs when the
injury is below the T-12 level. The bladder muscles
become sluggish or don’t work at all, and the urine
stays in the bladder and stretches its walls. The
urine then backs up into the kidneys. Treatments
include medications or surgery.
Illustration 10: Bladder Diagram
The number one most common complication is urinary tract infection (UTI). The source is
bacteria. Symptoms include fever, chills, nausea, headache, increased spasms, and autonomic
dysreflexia; however, these are also symptoms of other illnesses.
It is highly recommended that you call your doctor immediately for
advice if you have any of these symptoms.
UTIs can be diagnosed with a urine culture.
To minimize your chances of getting a UTI, keep your personal care supplies clean, keep your
skin clean, completely empty your bladder, drink plenty of fluids (preferably water), use the
proper techniques taught to you in rehabilitation, and maintain regular urologic check-ups.
The most common bladder management programs
involve:
•
Intermittent catheterization
A thin, flexible, hollow tube that is inserted
through the urethra into the bladder and allows the
urine to drain out.
Illustration 11: Intermittent Catheterization
Florida Spinal Cord Injury Resource Center – 13
•
Indwelling catheter
A catheter that
remains in place
continuously. This
type of catheter has
a balloon on the
end that is inflated
with sterile water
once the end is
inside the bladder.
The inflated balloon
prevents the
catheter from
slipping out.
Illustration 12: Indwelling Catheterization for Males and Females
•
External condom catheter for men
A special condom that can be
attached to a catheter. The
condom keeps the catheter in
place and collects urine.
Illustration 13: External Condom
Catheter for Men
Bowel Control
After spinal cord injury, control of bowel muscles is lost. Like the bladder, the bowel can be
categorized as spastic or flaccid. Also like the bladder, spastic bowels are most common in
injuries above the T-12 level, and flaccid bowels are common below the T-12 level of injury. In
rehabilitation, you will learn a program of emptying the bowel on a regular basis.
In spastic bowels, the management program includes the use of stool softeners to aid in
emptying the bowels, and digital stimulation. In flaccid bowels, the management program
includes manually emptying the stool.
For the best results, schedule a time (the same time) every day to perform your management
program, exercise every day, drink plenty of water, and eat a variety of healthy foods,
especially foods with fiber.
14 – A Family and Survivor’s Guide to Spinal Cord Injury
Respiratory System
Persons with injuries below the T-12 level typically do not have a loss of respiratory function.
Injuries above the T-12 level will complicate the breathing process as the level rises toward the
brain.
According the Spain Rehabilitation Center, and as shown in their diagram below, the
“diaphragm…is normally the main muscles that you use when you inhale. The intercostal
muscles…help to expand your ribs as you inhale. The neck muscles normally work to
expand your upper chest when inhaling. The abdominal muscles work with these other
muscle groups to help you breath deeply and cough.” Therefore, when you suffer a spinal cord
injury and lose muscle control, you lose some breathing capability.
Complete injuries above the T-12
level usually result in total loss of
respiratory muscle function below
the level of injury. This can cause
various complications. For example,
a complete injury between C-3 and
C-5 loses all control of the
diaphragm muscles, and a ventilator
will be needed to help the person
breath. People with injuries above
the C-3 will always use a ventilator
to help them breathe.
Illustration 14: Muscles that Help
the Body Breathe
The two most widespread complications in spinal cord injury related to respiratory function are
pulmonary embolism and pneumonia. Pulmonary embolism is a blockage in the blood
vessels of the lungs, and pneumonia is an infection or inflammation of the lungs caused by
bacteria, viruses, and other agents. Pulmonary embolism is the number two cause of death for
all persons with spinal cord injury within the first five years of the injury. Pneumonia is the
number one leading cause of death for all persons with spinal cord injury.
These complications can occur in people of all injury levels.
Symptoms of pneumonia include shortness of breath, pale skin, and fever, with a feeling of
heavy chest and an increase of congestion.
Skin System
The most common skin complications are pressure sores. They are
most often seen over bony body areas like the shoulder blades,
buttocks, hips, and heels.
Illustration 15: Main Pressure Areas
Florida Spinal Cord Injury Resource Center – 15
Complications from pressure sores include infection, dehydration, anemia, and electrolyte
imbalance. They also produce pain, disfigurement, and hospitalization.
In extreme cases, the infection involved with a sore can threaten
your life.
Steps You Can Take to Reduce Your Chances of Getting a
Pressure Sore
1. Perform regular pressure relief.
2. Use a proper cushion on your wheelchair.
3. Sleep on a mattress.
4. Inspect your skin often for redness, cracks, bruises, and blisters.
5. Keep your skin clean and dry.
6. Wear shoes while in your wheelchair.
7. Do not wear clothing with thick seams.
8. Don’t store items under your seat cushion.
9. Perform safe transfers.
10. Maintain correct cushion maintenance.
Illustration 16: Pressure Relief
Three common additional symptoms of skin problems are an increase in spasms, unusual
sweating, and elevated body temperature.
Circulatory System
The most common circulatory problem related to spinal cord injury appears in those people
injured above T-6. These individuals are prone to rapid increases in blood pressure, a
syndrome called autonomic dysreflexia.
Autonomic dysreflexia is usually caused by a bowel or bladder that is too full for an extended
period of time. Symptoms are high blood pressure, headache, sweating, and skin changes
above the injury level.
Illustration 17: Autonomic Dysreflexia Card
Spinal cord injury survivors who are prone to autonomic dysreflexia should carry medical alert
cards that contain instructions regarding treatment. Not all medical personnel are familiar with
this complication.
16 – A Family and Survivor’s Guide to Spinal Cord Injury
COMMON QUESTIONS AND ANSWERS FROM FAMILY AND
FRIENDS
Q: Will our loved one ever walk again?
A: The likelihood of walking unaided with a complete injury is small. It will be well into the
rehabilitation process before this question can be answered with any real accuracy.
Q: How do we respond when our loved one asks us questions about their injury?
A: Always be honest and open. Answer all questions with the most accurate information that is
available to you. Never promise that your loved one will walk again.
Inflating a loved one’s hopes with impossible promises can be
harmful during a time when they need to set realistic goals for their
rehabilitation program.
Q: I see movement in my loved one’s legs. What does that mean?
A: Most often the movement is spasticity. Spasticity, or spasm, is an involuntary movement of
the muscles.
The family needs to understand that they, too, are grieving a loss—
the loss of a loved one as he or she had always been. Don’t focus on
the hope of walking. Focus on the healing of your loved one.
Q: Can a survivor of
spinal cord injury ever
marry and have children?
A: Typically, women can
have children, and men
can resume sexual
activities. Both remain
capable of being loved
and giving love.
Illustration 18: SCI Survivors Can Marry and Have Families
Q: Are most families as anxious as we are?
A: Both the family and their loved one are traumatized by spinal cord injury. Reactions
commonly begin with relief that your loved one is alive before moving onto shock. You may
feel numb, confused, frightened, and anxious. Such feelings are normal because you are
worried about your loved one and uncertain about the future.
Q: How will this injury impact my family on the whole?
A: Family roles usually change after a loved one survives a spinal cord injury. These changes
are stressful, and it is not uncommon for family members to react occasionally in ways that
Florida Spinal Cord Injury Resource Center – 17
other members do not understand. Hold onto your personal and family strength, accept help,
and always remember that the family is there to support and love one another.
Q: I’m not the one who is hurt, but why do I feel like I’ve lost so much?
A: The way of life you’ve known to this point is over. The spinal cord injury has changed that.
Both the spinal cord injury survivor and his or her family have to deal with that loss. Although
the experience is different, both survivor and family will go through a grieving process.
DENIAL: The survivor and family often act as though nothing has happened, as though
nothing has changed. They can refuse to accept that this loss is permanent. Many see
spinal cord injury as something that will pass with time.
SADNESS/DEPRESSION: In all cases, the survivor and family experience a sense of
sadness over the experience. However, sometimes people fall into a depression over
the injury. Look out for these signs: prolonged, extreme sadness; inactivity; irrational
thinking; significant increase or decrease in appetite and sleep patterns; feelings of
dejection, hopelessness, and worthlessness; and thoughts of suicide.
ANGER: Some people’s reaction to the injury is strong displeasure. They show it by
lashing out verbally and physically toward others, including their loved ones. Often this
anger is coupled with guilt because you feel there was a way you could have prevented
the injury. The survivor and family may even feel anger toward God.
BARGAINING: During this phase, the survivor and family members have begun to
accept the seriousness of the injury; although, they want to hold onto the belief that the
injury is not permanent. Many times people believe their prayers will be answered, and
they only have to accept the way things are temporarily.
ACCEPTANCE: People gain a realistic view of the injury, and they find meaning in life
again. They have thoughts about the future, and they begin to set goals to pursue in
life.
Reaching the stage of acceptance is not accomplished overnight in
the majority of cases, especially for the survivor. The medical team is
prepared to help the survivor reach this stage.
Q: What are some every day things the family can do to make it through this very stressful
time?
A: This list is meant to get you started. Work with your family, friends, treatment team, and
others to come up with a list that works for you.
• Seek help when you need it. Accept it when it’s offered.
• Don’t try to “go it alone.” Maintain contact with friends and activities you enjoy.
• Work out a visitation schedule with other family members, so you have time to yourself.
• Make sure each member of the family knows they have not been forgotten and left to
handle the injury alone.
• Do not try to keep everything inside. Find someone to talk to about your feelings.
• Maintain contact with the treatment team.
• Find a support group.
18 – A Family and Survivor’s Guide to Spinal Cord Injury
OUR ROLES IN THE REHABILITATION PROCESS
It’s important for the family and the survivor to work together through this traumatic time. The
chart below is a reminder to be aware of how the other is feeling, and to not let your feelings
cloud the things you say and do. Remember the big picture: your loved one’s health.
FAMILY
SURVIVOR
Initially:
• Learn as much as you can about your
loved one’s care. What equipment will he
or she need? What procedures will he or
she need my help with?
• Enlist family and friends to help secure
benefits. Set up a visiting schedule. Let
them organize a charity function.
• Gather and maintain accurate financial,
insurance, and employment information.
Initially:
• Don’t be afraid to ask questions about
what’s happening around you. Find out
how and why things are happening. Selfadvocate for knowledge of your new
situation.
• Accept help when it is needed, but don’t
become dependent on people’s help. Do
for yourself what you can.
• Get your finances straightened out as soon
as possible.
Rehabilitation:
Rehabilitation:
• Concentrate on learning to take care of
• Get referrals for equipment and avenues of
yourself and getting back to work.
support.
• Be persistent in your therapy.
• Be supportive.
• Stay positive. Don’t start sentences with “I
• Get involved in the therapy sessions.
can’t…”
• Celebrate your loved one’s progress.
• Revel in your achievements.
Overall:
• Remember rehabilitation cannot go any
faster than the injury allows.
• Remember that simple tasks must be
mastered before more complicated skills
can be learned.
• Take care of yourself.
• Help your loved one begin thinking about
his or her future.
Overall:
• Remember rehabilitation cannot go any
faster than the injury allows.
• Remember that simple tasks must be
mastered before more complicated skills
can be learned.
• Take care of yourself.
• Think about your future. Begin setting
your long-range goals.
Table 1: Family and Survivor Roles During Rehabilitation
Florida Spinal Cord Injury Resource Center – 19
FINANCIAL ASSISTANCE
Finances are a major area of concern for the families of spinal cord injury survivors, especially if
the person injured is the highest paid worker in the household. There are two basic programs
funded by the Federal government available to spinal cord injury survivors: Social Security
Disability Insurance (SSDI) and Supplemental Security Income (SSI). Other programs also exist
to assist in the rehabilitation process–Florida Medicare, Medicaid, Brain and Spinal Cord Injury
Program, Children’s Medical Services, and Vocational Rehabilitation.
Social Security Disability Insurance
SSDI pays benefits to you and certain members of your family if you are "insured," meaning
that you worked long enough and paid Social Security taxes.
Qualifying for Benefits
You must first have worked in jobs covered by Social Security long enough to earn work
credits.
You must have a medical condition that meets Social Security's definition of disability.
Disability under Social Security is based on your inability to work. You’re considered
disabled under Social Security rules if you cannot do work that you did before and they
decide that you cannot adjust to other work because of your medical condition(s). Your
disability must also last or be expected to last for at least one year or to result in death.
Describing the Benefits
In general, Social Security pays monthly cash benefits.
Benefits usually continue until you are able to work again on a regular basis.
There are also a number of special rules, called "work incentives," that provide
continued benefits and health care coverage to help you make the transition back to
work.
Explaining Work Credits
Social Security work credits are based on your total yearly wages or self-employment
income. You can earn up to four credits each year. The amount needed for a credit
changes from year to year. In 2005, for example, you earn one credit for each $920 of
wages or self-employment income. When you've earned $3,680, you've earned your
four credits for the year. The number of work credits you need to qualify for disability
benefits depends on your age when you become disabled. Generally, you need 40
credits, 20 of which were earned in the last 10 years ending with the year you become
disabled.
However, younger workers may qualify with fewer credits. Before age 24, a person may
qualify if he or she has 6 credits earned in the 3-year period ending when your disability
starts. Between age 24 and 31, a person may qualify if he or she has credit for working
half the time between age 21 and the time you become disabled. For example, if you
become disabled at age 27, you would need credit for 3 years of work (12 credits) out
of the past 6 years (between ages 21 and 27).
20 – A Family and Survivor’s Guide to Spinal Cord Injury
Supplemental Security Income
SSI pays benefits based on financial need. It is designed to help aged, blind, and disabled
people, who have little or no income; and it provides cash to meet basic needs for food,
clothing, and shelter.
Answering Social Security’s Questions
Social Security will ask you these questions:
• Are you unable to work because of a serious illness, injury or condition?
• Has there been some period in the past 14 months when you could not work
because of a serious illness, injury or condition?
• Are you working despite having a serious illness, injury or condition?
• When did you become disabled?
• How much do you earn each month from working?
• What is the total value of any cash, bank accounts, stocks or bonds that you own
individually or with someone else?
• Are either of your parents (including adoptive parents or stepparents) deceased?
• Does either of your parents (including adoptive parents or stepparents) receive
Social Security retirement or disability benefits?
The answers to these questions will determine your eligibility to the following programs:
• Medicare
• Social Security Disability
• Social Security Retirement
• Social Security Survivors
• Special Veterans
• Supplemental Security Income (SSI)
Contacting Social Security
Social Security Administration
Office of Public Inquiries / Windsor Park Building
6401 Security Blvd. / Baltimore, MD 21235
Web site: http://www.ssa.gov / Toll-Free: 800-772-1213 / Toll-Free TTY: 800-325-0778
Medicare
Describing Eligibility
The Centers for Medicare and Medicaid (CMS) runs Medicare, the nation's largest health
insurance program, covering nearly 40 million Americans at a cost of just under $200 billion.
Medicare provides health insurance to:
• People age 65 or older;
• Some people with disabilities under age 65; and
• People with permanent kidney failure requiring dialysis or a transplant.
Explaining the Benefits
Medicare has two parts: Hospital Insurance (Part A) and Medical Insurance (Part B).
Medicare Part A helps pay for inpatient hospital services, skilled nursing facility services,
home health services, and hospice care. Medicare Part B helps pay for doctor services,
outpatient hospital services, medical equipment and supplies, and other health services
and supplies.
Florida Spinal Cord Injury Resource Center – 21
Selecting the Appropriate Benefit
People who qualify for Medicare may have choices beyond the traditional Original
Medicare Plan. Some people may have Medicare Managed Care Plans or Private Fee-forService Plans available in their area. These options are health plans offered by private
insurance companies. Check www.medicare.gov for a listing of options available in a
given geographical area.
Medicaid
Medicaid is a health insurance program for certain low-income people. It is funded and
administered through a state-federal partnership. Although there are broad federal
requirements for Medicaid, states have a wide degree of flexibility to design their program.
States have authority to:
• Establish eligibility standards;
• Determine what benefits and services to cover;
• Set payment rates.
Describing Eligibility
On any given day, there are nationally about 36 million people who are eligible for
Medicaid. These people include: certain low-income families with children; certain lowincome people who are aged; blind or disabled; certain low-income pregnant women
and children; and people who have very high medical bills.
Explaining the Benefits
Because states have flexibility in structuring their Medicaid programs, there are
variations from state to state. All states, however, must cover these basic services:
inpatient and outpatient hospital services; laboratory and X-ray services, skilled nursing
and home health services, doctors' services; family planning; and periodic health
checkups, diagnosis and treatment for children.
Contacting Medicare and Medicaid
The Official U.S. Government Site for People with Medicare
Toll-Free: 1-800-MEDICARE / Web site: www.medicare.gov
Centers for Medicare and Medicaid Services
7500 Security Boulevard / Baltimore, MD 21244-1850
Phone: 410-786-3000 / TTY: 410-786-0727
Toll-Free: 866-226-1819 / Toll-Free TTY: 877-267-2323
Web site: www.cms.hhs.gov
Florida Brain and Spinal Cord Injury Program
Describing Services
The Brain and Spinal Cord Injury Program (BSCIP) offers case management as the
primary service available to assist clients and their families. Beyond that, BSCIP can
provide acute care, inpatient and outpatient rehabilitation care, transitional living
services, adaptive equipment, home modifications, and vehicle modifications. Through
new initiatives, like the Medicaid Home and Community Based Waiver, BSCIP is
expanding its services to include personal care assistance, adult companion services, life
skills training, environmental accessibility adaptation, personal adjustment counseling,
22 – A Family and Survivor’s Guide to Spinal Cord Injury
attendant care, behavioral programming, assistive technology, consumable medical
supplies, adaptive health and wellness, rehabilitation engineering evaluations, and
community support coordination. Additionally, BSCIP is participating in the Consumer
Directed Care Plus program, which is for Medicaid Waiver consumers who wish to have
more direct control and influence in the direction of their services of care.
Explaining Eligibility
Any resident who sustains a traumatic brain injury or spinal cord injury and meets the
following requirements is eligible for services:
• Has been referred to the BSCIP Central Registry (1-880-342-0778)
• Is a legal resident of Florida.
• Is medically stable.
• Meets the state definition for spinal cord and/or moderate to severe brain
injury.
• Is reasonably expected to benefit from rehabilitation services based upon the
goal of community reintegration.
Contacting BSCIP
BSCIP has split Florida into 5 regions. An office is located in each region. Use the
information below to contact the appropriate office.
Headquarters - Department of Health/Florida Brain and Spinal Cord Injury Program
4052 Bald Cypress Way, Bin C-25 / Tallahassee, FL 32399-1744
Phone: 850-245-4045 / Toll-Free: 866-875-5660 / FAX: 850-921-0499
Web site: www.doh.state.fl.us/workforce/brainsc/index.html
Region 1 - Brain and Spinal Cord Injury Program
2050 Art Museum Drive / 4800 Building, Suite # 105 / Jacksonville, FL 32207
Phone: 904-348–2755
Serves Alachua, Baker, Bay, Bradford, Calhoun, Clay, Columbia, Dixie, Duval, Escambia, Franklin, Gadsden,
Gilchrist, Gulf, Hamilton, Holmes, Jackson, Jefferson, Lafayette, Leon, Levy, Liberty, Madison, Nassau,
Okaloosa, St. Johns, Santa Rosa, Suwannee, Taylor, Union, Wakulla, Walton, and Washington Counties.
Region 2 - Brain and Spinal Cord Injury Program
3191 Maguire Boulevard, Suite # 233 / Orlando, FL 32803 / Phone: 407-897–5964
Serves Brevard, Citrus, Flagler, Hernando, Lake, Marion, Orange, Osceola, Putnam, Seminole, Sumter, and
Volusia Counties.
Region 3 - Brain and Spinal Cord Injury Program
9400 4th Street, North, Suite # 212 / St. Petersburg, FL 33702 / Phone: 727-570–3427
Serves Desoto, Hardee, Highlands, Hillsborough, Manatee, Pasco, Pinellas, Polk, and
Sarasota Counties.
Region 4 - Brain and Spinal Cord Injury Program
2550 West Oakland Park Boulevard / Fort Lauderdale, FL 33311 / Phone: 954-677–5639
Serves Broward, Charlotte, Collier, Glades, Hendry, Indian River, Lee, Martin, Okeechobee,
Palm Beach, and St. Luce Counties.
Region 5 - Brain and Spinal Cord Injury Program
401 Northwest 2nd Avenue, Room S–221 / Miami, FL 33128 / Phone: 305-377–5464
Serves Miami-Dade and Monroe counties.
Florida Spinal Cord Injury Resource Center – 23
Children’s Medical Services
Explaining the Program
The pediatric component of the Brain and Spinal Cord Injury Program (BSCIP) serves
children age birth through 18 years with moderate-to-severe brain and/or spinal cord
injury resulting from external trauma. The mission of the program is to provide the
services necessary for injured children to return home and be reintegrated into their
school and community.
Children's Medical Services Network nurse case managers provide case management
and care coordination for the children in the BSCIP and their families.
All of the funding, services, eligibility, definitions, referrals, and family responsibility
components of the BSCIP apply to the Children’s Medical Services (CMS) for children
with traumatic brain injuries (TBI) and/or spinal cord injuries (SCI).
Listing the Services
Some of the other many CMS programs that apply to children of all ages are:
• Child Protection Team
• Children's Cardiac Program
• Craniofacial/Cleft Lip and Cleft Palate Program
• Diabetes/Endocrine Program
• Infant Hearing Program
• Liver Transplant Program
• Medical Foster Care Program
• Pediatric Hematology/Oncology Program
• Pediatric HIV AIDS Program
• Regional Genetics Program
• Regional Perinatal Intensive Care Centers
Contacting CMS
CMS has divided the state into many regions with an office in each region. To contact
the office closest to you, please contact their headquarters in Tallahassee.
Department of Health/Florida Brain and Spinal Cord Injury Program/Children’s Medical
Services
4052 Bald Cypress Way, Bin A-06 / Tallahassee, FL 32399-1700
Phone: 850-245-4444, Ext. 2260 / SC Phone: 205-4444, Ext. 2260
FAX: 850-487-1279 / SC FAX: 277-1279
Web site: www.cms-kids.com
Vocational Rehabilitation
Vocational Rehabilitation Services (VRS) provides services for eligible persons with physical or
mental impairments. These services are designed to enable you to prepare for, to get, to keep,
or to regain employment.
24 – A Family and Survivor’s Guide to Spinal Cord Injury
Explaining Eligibility
Eligibility for VRS, as determined below, is based upon the presence of a physical or mental
impairment and a goal of employment.
• The physical or mental impairment constitutes or results in a substantial impediment
to employment.
• The individual’s employment outcome can benefit from vocational rehabilitation
services.
• The individual requires vocational rehabilitation services to prepare for, to get, to
keep, or to regain employment.
Listing Services
• Rehabilitation
• Transportation and Vehicle Modification
The most economical modes of transportation will be used for securing your
rehabilitation services and occupational goal.
• Books, occupational tools, equipment, and other training material.
• Occupational licenses
• Rehabilitation technology to assist in your evaluation, rehabilitation, and employment
goals.
• Maintenance to cover additional costs incurred by the rehabilitation process.
• Interpreter services, telecommunications, and other technological aids.
• Referral to appropriate community services.
Vocational Rehabilitation’s rehabilitation service has six steps. This brief section explains
these steps.
Step One: Applying For Services
Any person living in Florida who has a physical or mental impairment and is of working
age or approaching working age may apply for rehabilitation services.
Step Two: Evaluation
Your VRS counselor will work to find out what can be done to help you get work or
determine what might be blocking your ability to get work. The evaluation will indicate
whether there is treatment or other forms of assistance which are needed to help
support your efforts to obtain employment.
Helpful Hints: Talk the VR Talk - Do’s and Don’ts
Do: “I want to get back to work.”
Do: “I need vocational direction.”
Do: “I need vocational guidance
and counseling.”
Don’t: “I want to go to school.”
Don’t: “I need more therapy.”
Don’t: “I don’t want to loose my
SSI/SSDI check.”
Step Three: Rehabilitation Planning
Once you are determined to be eligible for VRS services, your counselor will work with
you to develop a plan called the Individual Plan for Employment, which will be agreed to
and signed by you and your counselor.
Florida Spinal Cord Injury Resource Center – 25
Step Four: Receipt of Services
VRS can help you overcome or manage your disability while improving your ability to get
and keep a job. Various types of services can be provided, depending on your needs.
Step Five: Job Placement
When you are ready for employment your VRS counselor will assist you with finding job
openings in your community. After you begin work, your VRS counselor will want to
make sure you and your employer are satisfied and may determine if other services are
needed to help keep you working.
Step Six: Closure
After you have worked successfully at your job for at least 90 days, you and your VRS
counselor will discuss ending the counselor’s active participation in your rehabilitation.
Illustration 19: Vocational Rehabilitation Services Help Get You Back to Work
26 – A Family and Survivor’s Guide to Spinal Cord Injury
MAJOR TYPES OF INSURANCE FOR MEDICAL AND
REHABILITATION TREATMENT
Automobile Insurance
More people sustain a spinal cord injury during a car
accident than any other way. This fact makes
automobile insurance even more important—that you
have it, as well as that other drivers on the road have
it.
Two options when selecting insurance are important:
Personal Injury Protection and Uninsured Motorist
Benefit.
Every car owner is required to carry Personal Injury
and Liability coverage, and funds would be available to
you up to the limits of the policy. The Uninsured Motorist Benefit option would start when the
collision that injured you or your loved one involved another driver who did not have the
Personal Injury and Liability coverage.
Illustration 20: Car Accident
Worker’s Compensation
Worker’s Compensation is comprehensive insurance and is
available when a person is injured while performing their job
duties, provided the employer is carrying the insurance. It is
required by law that employers maintain this insurance.
You must notify the employer immediately of the injury.
Illustration 21: Danger Sign
Health and Accident Insurance
There are several types of health insurance policies, like hospital, medical and surgical
coverage; major medical or catastrophic coverage; and comprehensive major medical coverage.
If you are unsure what coverage you have, contact your insurance provider for more details.
Short and Long Term Disability
These insurance policies are carried through a person’s employer, and the number of employers
offering these policies increases every year. It is usually important the family or uninjured
person contact the injured person’s employer as soon as possible to determine if this benefit
exists for this person. Most of these plans require physician documentation and lengthy forms
to initiate. The process can take weeks; therefore, it is important to initiate it as soon as
possible.
Florida Spinal Cord Injury Resource Center – 27
COMMUNITY RESOURCES
Centers for Independent Living
Florida has 14 centers for independent living centers and nine satellite centers that are
designed to assist people with disabilities in achieving and maintaining independent lifestyles.
These non-residential centers have a majority of people with disabilities on their governing
boards and they hire qualified people with disabilities to fill management and service delivery
positions. The basic idea behind independent living is that the ones who know best what
services people with disabilities need in order to live independently are disabled people
themselves.
SERVICES
The centers offer a wide variety of services, such as home modifications, wheelchair liftequipped transportation, equipment loan closets, and community education based on
the specific needs of their consumers and availability elsewhere in the community.
However, the four core services provided are considered essential to the efforts of
people with disabilities to live independently.
Information and Referral-Centers maintain comprehensive information files on
availability in their community to accessible housing, transportation, employment
opportunities, rosters of persons available to serve as personal care attendants,
interpreters for hearing impaired people, readers for visually impaired people, and many
other community services.
Independent Living Skills Training-Centers provide training to help people with
disabilities gain skills that would enable them to live more independently, including
utilizing various public transportation systems, managing a personal budget, dealing
with insensitive and discriminatory behavior.
Peer Counseling-Centers offer a service in which a person with a disability can interact
with other persons who have disabilities and who are living independently in the
community. The objective is to explore options and to solve problems that sometimes
occur for people with disabilities, like making adjustments to a newly acquired disability,
experiencing changes in living arrangements, or learning to use community services
more effectively.
Advocacy-Centers provide two kinds of advocacy—individual and community advocacy.
Individual advocacy involves working with persons with disabilities to obtain necessary
support services from other agencies in the community. Community advocacy involves
initiating activities to make changes in the community that make it easier for all persons
with disabilities to live more independently.
Contacting the Centers in Florida
Caring and Sharing Center for Independent Living
12252 Belcher Road, South / Largo, FL 33773 / Phone: 727-577-0065 / TTY: 727-576-5034 /
Toll-Free: 866-539-7550 / FAX: 866-533-7558 / Web site: www.cascil.org
28 – A Family and Survivor’s Guide to Spinal Cord Injury
Center for Independent Living of Broward
8857 West McNab Road / Tamarac, FL 33321 / Phone: 954-722-6400 (TDD) / Toll-Free: 1888-722-6400 / FAX: 954-722-9801 / Web site: www.cilbroward.org
Center for Independent Living of North Central Florida
720 Northwest 23rd Ave. / Gainesville, FL 32609 / Phone: 352-378-7474 / TDD: 352-3758448 FAX: 352-378-5582 / Web site: www.cilncf.org
Center for Independent Living of North Florida, Inc.
1823 Buford Court / Tallahassee, FL 32308 / Phone: 850- 575-9621 / TDD: 850-576-5245 /
FAX: 850-575-5740 / Web site: www.cilnf.org
Center for Independent Living of Northwest Florida, Inc.
3600 North Pace Boulevard / Pensacola, FL 32505 / Phone: 850-595-5566 / Toll-Free: 877245-2457 / FAX: 850-595-5560 / Web site: www.cilnwf.org
Center for Independent Living of South Florida
6660 Biscayne Blvd. / Miami, FL 33138 / Phone: 305-751-8025 / TDD: 305-379-6650 / TollFree: 800-854-7551 / FAX: 305-751-8944 / Web site: www.soflacil.org
Center for Independent Living of Southwest Florida
3626 Evans Avenue / Fort Myers, FL 33901 / Phone: 239-277-1447 / TDD: 239-277-3694 /
Toll-Free: 888-343-6991 / FAX: 239-277-1647 / Web site: www.cilfl.org
Center for Independent Living in Central Florida, Inc.
720 North Denning Drive / Winter Park, FL 32789-3020 / Phone: 407-623-1070 / TDD: 407623-1185 / Toll-Free: 877-891-6448 / FAX: 407-623-1390 / Web site: www.cilorlando.org
Center for Independent Living in Florida Keys
103400 Overeas Hwy. Pink Plaza, Ste. 243 / Key Largo, FL 33037 / Phone: 305-453-3491 /
Toll-Free: 877-333-0187 / FAX: 305–453–3488
Coalition for Independent Living Options, Inc.
6800 Forest Hill Boulevard / West Palm Beach, FL 33413 / Phone: 561-966-4288 / TDD:
561-641-6538 / Toll-Free: 800-683-7337 / FAX: 561-641-6619 / Web site: www.cilo.org
Independent Living Resource Center of Northeast Florida
2709 Art Museum Drive / Jacksonville, FL 32207 / Phone: 904-399-8484 / TDD: 904-3986322 / Toll-Free: 888-427-4313 / FAX: 904-396-0859 / Web site: www.cilj.com
Self Reliance, Inc. Center for Independent Living
8901 North Armenia Avenue / Tampa, FL 33604 / Phone: 813-375-3965 / TDD: 813-3753972 / FAX: 813-375-3970 / Web site: www.self-reliance.org
Spacecoast Center for Independent Living
331 Ramp Road / Cocoa Beach, FL 32931 / Phone: 321-784-9008 (TDD) / FAX: 321-7843702
Suncoast Center for Independent Living, Inc.
1945 Northgate Boulevard / Sarasota, FL 34234 / Phone: 941-351-9545 / TDD: 941-3519943 / FAX: 941-351-9875 / Web site: www.scil4u.org
Florida Spinal Cord Injury Resource Center – 29
Support Groups
Spinal cord injury support groups are typically organizations of volunteers who offer SCI
survivors and their families and friends the opportunity to talk with other SCI survivors who
have been adjusting to their own disability. Dealing with life’s challenges, receiving straight
answers and obtaining accurate information are among the many advantages of attending a
support group. The prospect of returning home might be made somewhat easier with the help
of a support group, whose members are usually those people who have dealt with the changes
that need to be made once you leave the hospital healthcare setting. The support group can be
thought of as an outlet...for venting frustrations, asking questions, meeting new people,
seeking honesty, obtaining a variety of opinions, locating new resources, or just listening to
others.
Contacting Support Groups in Your Area of Florida
Greater Orlando Spinal Cord Injury Network
720 North Denning Drive / Orlando, FL 32789 / Phone: 407-623-1070
Orlando Spinal Cord Injury Support Group
Orlando Regional Lucerne / 818 South Main Lane / Orlando, FL 32801 / Phone: 407-8232967
Naples Spinal Cord Group
Naples Community Hospital, Telford Building – 2nd Floor, Classroom 3
350 7th Street North / Naples, FL 34102 / Phone: 239-277-1447
North Florida Spinal Cord Injury Association
Healthsouth Rehabilitation of Tallahassee
1675 Riggins Road / Tallahassee, FL 32308 / Phone: 850-656-4831 / 850-656-4800 /
FAX: 850-656-4809
Polk County Center for Independent Living Support Group
1845 North Crystal Lake Drive / Lakeland, FL 33801 / Phone: 863-413-2722
Spacecoast Support Group for Persons with Disabilities
331 Ramp Road / Cocoa Beach, FL 32931 / Phone: 321-784-9008 / FAX: 321-784-3702
Spinal Cord Community Support Group
Pinecrest Rehabilitation Hospital
5360 Linton Boulevard / Delray Beach, FL 33484 / Phone: 561-495-0400 / 561-4983088 / FAX: 561-499-6812
Spinal Cord Injury Family Education and Support Group
University of Miami / Jackson Memorial Rehabilitation Center
1611 Northwest 12th Avenue / Institute Building-Room # 332B / Miami, FL 33136 /
Phone: 305-585-6985 / FAX: 305-585-6007
Spinal Cord Injury Group
Center for Independent Living of Southwest Florida
3626 Evans Avenue / Fort Myers, FL 33901 / Phone: 239-277-1447 / Toll-Free: 888-3436991 / FAX: 239-277-1647
30 – A Family and Survivor’s Guide to Spinal Cord Injury
Spinal Cord Injury Outreach Network
Healthsouth Rehabilitation of Largo
901 Clearwater Largo Road, North / Largo, FL 33770 / Phone: 727-586-2999 / FAX:
727-588-3404
Spinal Cord Injury Peer Support Meetings
Healthsouth Sea Pines Rehabilitation Hospital
101 East Florida Avenue / Melbourne, FL 32901 / Phone: 321-984-4600 / 321-984-4673
/ FAX: 321-984-4627
Spinal Cord Injury Support Group at Brooks
Brooks Rehabilitation Hospital
3599 University Boulevard, South / Jacksonville, FL 32216 / Phone: 904-858-7238
Spinal Cord Injury Support Group at Shands
Shands-Jacksonville
655 West 8th Street / Jacksonville, FL 32209 / Phone: 904-244-4427 / Fax: 904-2444916
Spinal Cord Support Group in Palm Beach
St. Mary’s Medical Center / The Rehabilitation Institute
901 45th Street / West Palm Beach, FL 33407-2495 / Phone: 561-840-6062 or 561-4953632 / Web site: www.stmarysmc.com
Spinal Cord Support Group in Spring Hill
Healthsouth Rehabilitation Hospital of Spring Hill
12440 Cortez Blvd. / Brooksville, FL 34613 / Phone: 352-592-4279
Tampa SCI Support Group
Hannah Oaks Assisted Living Community
2425 E. Hanna Ave. / Tampa, FL 33610 / Phone: 813-236-4853
Unidos Sobre Ruedas (“United on Wheels”)
Jackson Memorial Rehabilitation Center
1611 Northwest 12th Avenue / The Institute Building-Room # 138B / Miami, FL 33136 /
Phone: 305-585-1339 / 305-266-6044 / FAX: 305-585-1340
Other Support Avenues
Through the Centers for Independent Living or your local contacts, contact local self-help
organizations, family services, Red Cross chapters, and local churches for help and support.
Florida Spinal Cord Injury Resource Center – 31
ABOUT US . . .
THE FLORIDA SPINAL CORD INJURY RESOURCE CENTER
The Florida Spinal Cord Injury Resource Center (FSCIRC), established in January 1994, serves
as the statewide clearinghouse of SCI resource information for persons who have survived an
SCI, their families and friends, healthcare professionals, support groups, the media, and the
general public. The purpose and benefits in operating such a center are to:
• Increase knowledge of SCI related resources.
• Help prevent secondary medical complications resulting from lack of knowledge.
• Foster independence through self-knowledge.
• Provide immediate access to current SCI resource information when needed by
consumers throughout their lifetime.
SERVICES
New Injury Packet
FSCIRC is notified weekly of newly injured survivors who have been reported to the
BSCIP Central Registry. Upon notification, FSCIRC provides that individual with vital
information meant to expand his or her awareness and education about SCI.
This packet includes information about sports and recreation, vehicle conversion, home
modification, secondary medical complications, adjustment to SCI, sexuality,
employment, state and national benefits, state and national organizations that aid SCI
survivors, healthcare information, parenting as an SCI survivor, parenting a child with
SCI, equipment, and SCI research.
Peer Counseling
Professional counselors visit rehabilitation centers, homes, community centers, and any
number of places to provide this service. Through training and personal experience
these SCI survivors know what it takes to succeed in life with this injury.
Peer Mentoring Services
In 2003, FSCIRC began offering coordinated peer mentoring
services. These services are offered to BSCIP clients, as well as
individuals outside the program. The basis of the program is to
link new injuries and individuals struggling with life post-injury
with mentors who have had considerable success post-injury.
Mentors have undergone standardized training to ensure they
act in the best interest of those they interact with. On a whole,
the program seeks to reiterate the message of maximum
independence and positively overcoming injury. These goals
are marked by successful community integration in such
activities as employment, recreation, and home ownership.
Mentors’ names are kept in a database at FSCIRC and anyone
interested in meeting or matching someone they know with a
mentor should call for more information.
Illustration 22: Peer Mentor
32 – A Family and Survivor’s Guide to Spinal Cord Injury
Information and Referral
FSCIRC provides information on any topic relating to SCI. This information is provided
by means of the telephone, mail, e-mail, FAX, or in person. If FSCIRC does not
immediately have the requested information, the staff will research the subject and
provide it to you. This is an important ally SCI survivors have when fighting such things
as secondary medical complications.
Contacting the Resource Center
Florida Spinal Cord Injury Resource Center
Tampa General Rehabilitation Center
Physical Address: / 2 Columbia Drive / Tampa, FL 33606
Mailing Address: / P.O. Box 1289, Room R212 / Tampa, FL 33601
Phone: 813-844-4286 / 813-844-4287
Toll-Free: 800-995-8544
FAX: 813-844-4322
E-mail: [email protected]
Web site: www.flspinalcord.us
Illustration 23: Screen Shot from www.FLSPINALCORD.us
Florida Spinal Cord Injury Resource Center – 33
Glossary
These are common terms you may hear in the acute and rehabilitation phases that are not explained in this
publication.
AMBULATION – Walking with or without aids, such as braces and crutches.
ANKYLOSIS – Loss of mobility in a joint caused by bony deposits of calcium in the joints.
ATELECTASIS – Loss of breathing function characterized by collapsed lung tissue, which can be a problem for high
quadriplegics who are unable to clear lung secretions. This, in turn, can lead to pneumonia.
AUTONOMIC NERVOUS SYSTEM – The part of the nervous system that controls involuntary activities, including
the heart. The autonomic system is divided into the sympathetic and parasympathetic systems.
BIOFEEDBACK – A process that provides sight or sound information about functions of the body, including blood
pressure, muscle tension, etc. By trial and error, one can learn to consciously control these functions.
Electromyographic biofeedback is a type of therapy that teaches, or re-teaches, the brain to use existing nerve
pathways more efficiently.
CAUDA EQUINA – The collection of spinal roots descending from the lower part of the spinal cord, occupying the
vertebral canal below the spinal cord. If injured, these roots have some recovery potential.
CONTRACTURE – A body joint which has become stiffened to the point that it can no longer be moved through its
normal range.
EDEMA – Swelling, usually in the legs or feet, caused when the body tissues contain an excessive amount of fluid.
Edema increases the risk of pressure sores.
ENDOTRACHEAL TUBE – A tube inserted through the patient’s mouth or nose that serves as an artificial airway.
FUNCTIONAL ELECTRICAL STIMULATION – The application of low level computer-controlled electric current to
the neuromuscular system, including paralyzed muscles, to enhance or produce function.
GAIT TRAINING – Instruction in walking, with or without equipment.
INCONTINENCE – Lack of bladder and/or bowel control.
INTERVERTEBRAL DISCS – Tough gristle “cushions” that separate the spinal vertebrae.
ISCHEMIA – A reduction in blood flow thought to be a major cause of secondary injury to the brain or spinal cord
after trauma.
LAMINECTOMY - An operation sometimes used to relieve pressure on the spinal cord.
LESION – An injury or wound.
LOWER MOTOR NEURONS – These nerve fibers originate in the spinal cord and travel out of the central nervous
system to muscles in the body.
MOTONEURON – A nerve cell whose cell body is located in the brain and spinal cord and whose axons leave the
central nervous system by way of cranial nerves or spinal roots. Motoneurons supply information to muscle tissues.
NEURECTOMY – An operation in which the nerves to particular muscles are cut to eliminate severe spasticity.
ORTHOSIS – A device applied to the exterior of the body to support, aid and align the body and limbs, or to
influence motion by assisting, resisting, blocking, or unloading the body weight.
34 – A Family and Survivor’s Guide to Spinal Cord Injury
OSTEOPOROSIS – Loss of bone density
OSTOMY – An opening in the skin to allow for a suprapubic catheter drainage for elimination of intestinal contents,
or for the passage of air.
PARAPLEGIA – Loss of function below the cervical spinal cord segments; upper body usually retains most function
and sensation.
PERIPHERAL NERVOUS SYSTEM – Nerves outside the spinal cord and brain. If damaged, these nerves have the
ability to regenerate.
PHRENIC NERVE STIMULATION – Electrical stimulation of the nerve that fires the diaphragm muscles, facilitating
breathing in C-1 and C-2 quads.
POSTURAL HYPOTENSION – Reduced blood pressure resulting in lightheadedness. Changes in the autonomic
nervous system after spinal cord injury prevents blood vessels from decreasing in size when the blood pressure
lowers, so that blood pools up in the legs or pelvic region.
PRIAPISM – A dangerous condition wherein the penis remains erect due to retention of blood.
QUADRIPLEGIA – Loss of function due to injured or diseased cervical spinal cord segments, affecting all four limbs.
RESIDUAL URINE – Urine that remains in the bladder after voiding.
RHIZOTOMY – A procedure that cuts or interrupts spinal nerve roots; sometimes used to treat spasticity.
ROTOREST BED – A special bed which rotates slowly from side to side. Its purpose is to prevent skin breakdown,
respiratory complications, and the development of blood clots.
SECONDARY INJURY – The biochemical and physiological changes that occur in the injured spinal cord after the
initial trauma has done its damage. Suspected causes include swelling and loss of blood flow.
SUCTIONING – Removal of mucus and secretions from lungs.
SYRINGOMYELIA – Formation of a fluid-filled cavity in the injured area of the spinal cord, a result of nerve fiber
degradation or necrosis. The cavity, called a syrinx, sometimes extends upwards, causing fresh damage to the cord.
Treatment often includes surgery to insert a shunt to drain the cavity.
TONGS – A traction device hooked to the skull in order to realign the spine.
UPPER MOTOR NEURONS – Long nerve cells that originate in the brain and travel in tracts through the spinal
cord. Any injury to these nerves shuts off contact with the brain. Reflex activity is still in tact, however, which
causes spasticity.
Florida Spinal Cord Injury Resource Center – 35
NOTES
36 – A Family and Survivor’s Guide to Spinal Cord Injury