Level of Injury

 

The level of injury is determined after the doctor does the different tests. The level is the lowest point on the spinal cord below which there is a decrease or absence of feeling (sensory level) and movement (motor level).

 

The higher the spinal cord injury is on the vertebral column, or the closer it is to the brain, the more loss of function (feeling and movement) there is. Fewer parts and systems of the body work normally with a higher level of injury.

 

For example, an injury at the T-8 levels means the individual has a decrease or loss of feeling and movement below the 8th thoracic spinal cord segment. A person with C-5 level of injury has a decrease or loss of feeling and movement below the 5th cervical spinal cord segment. Someone with a T-8 level of injury would have more feeling and movement than someone with a C-5 level of injury. Remember that the amount of feeling and movement also depends on if the injury is complete or incomplete.

 

 

A person is said to have paraplegia (par-a-plegi-a) when he has lost feeling and is not able to move the lower parts of his body. The injury is in the thoracic, lumbar, or sacral area. [See Figure D]

 

A person with tetraplegia (te-tra-ple-gi-a) [formerly called quadriplegia] has lost movement and feeling in both the upper and lower parts of his body. This injury is in the cervical area. [See Figure D]

 

 

 

 

Figure D

 

The shaded area shows those parts of the body that do not work in the same way after a spinal cord injury. [left]  The dark shading shows the areas of the body affected by a T-11 level injury to the lower spinal cord.  This person has paraplegia.[right] 

 

The dark shading shows the areas of the body affected by a C-3 level injury to the neck. This person has tetraplegia.

 

 

Changes After the Initial Injury

 

Sometimes the spinal cord is only bruised or swollen after the initial injury. As the swelling goes down, the nerves may begin to work again. The longer there is no improvement, the less likely it is that there will be improvement. If a little recovery in function does occur, there is considerably more hope. This is no guarantee that more function will return.

 

Some individuals have involuntary movements, such as twitching or shaking. These movements are called spasms. Spasms are not a sign of recovery. A spasm occurs when a wrong message from the nerve causes the muscle to move. The individual often cannot control this movement.

 

In addition to movement and feeling, a spinal cord injury affects other body function. The lungs, bowel, and bladder may not work the same as before the injury. There may also be changes in sexual function. During rehabilitation, the medical team teaches the individual with spinal cord injury new ways to manage his/her bodily functions.

 

See Resources:

 

·        Spinal Cord Injury & Disability Information

·        Spinal Cord Injury Foundations/Organizations

·        Magazine/Books/Pamphlets

 

* All italicized words appearing in this chapter can be found in the Glossary Section.

 

Chapter Two

After Spinal Cord Injury: What to Expect from Acute Medical Care

 

Frederick M. Maynard, M.D

Marquette, MI

 

 

Most spinal cord injuries result from an accident, such as a fall or car crash. These injuries are called traumatic injuries*. There are two major types of traumatic spinal cord injury (SCI).  Penetrating injuries result from gunshot wounds or stabbings. Non-penetrating, or closed, spinal cord injuries result from injuries to the bones of the spine, or vertebrae.  The spinal cord provides the major communication link between the brain and the muscles, the skin, and other organs of the body.  The loss of feeling and loss of movement are the major signs of injury to the spinal cord.

 

When people refer to the extent of someone's spinal cord injury, they are describing the amount of the body that has lost its connection to the brain. For example, cervical injuries involve injuries to the neck, and these injuries impair the body as high as the arms. Sometimes these injuries may also affect internal organs, including the muscles that enable someone to breathe. Cervical injuries are often referred to as quadriplegia or tetraplegia.

 

Thoracic injuries are those that affect the back below the neck and that involve the trunk area where there are ribs. Lumbar injuries occur in the lower back. Back injuries in both these areas involve the legs as well as the lower bowels, the bladder, and sexual organs. These injuries are commonly referred to as paraplegia.

 

When people refer to the severity of someone's injuries, they are describing the extent or degree of loss of feeling and movement in the areas of the body involved by the SCI. They can describe the severity as a complete lesion or as an incomplete lesion.

 

Complete spinal cord injuries are the most severe and describe the loss of all feeling and all movements in those parts of the body affected by the SCI.

 

Incomplete spinal cord injuries can cause some marked changes in bodily functions, but they don't result in a complete loss of all feeling. Incomplete injuries also result in a little or a lot of muscle weakness, but not a complete loss of all muscle function in those parts of the body affected by the SCI.

 

Phases of Initial Care

 

After a spinal cord injury, people usually are first seen by paramedics or emergency services personnel.  They provide life-saving first-aid and immobilize the spine.  People with suspected or

obvious signs of SCI are usually evacuated to trauma centers on backboards, often traveling by

helicopter as well as by ambulance. This emergency care and quick evacuation are the first of several medical steps on the injured person's road to rehabilitation.

 

·        Stabilization and Evaluation

 

The injured person is then taken to an emergency room. In this first hospital, the medical staff first wants to maintain essential body functions. These trauma professionals make sure that the patient is breathing, that the heart is pumping, and that they have stopped any bleeding. Emergency room physicians or trauma surgeons will then carefully examine patients for bodily injuries. Many patients with SCI have other injuries, also known as associated injuries. These can include limb fractures, broken ribs with bleeding into the chest, head injuries, or abdominal bleeding. Examinations for the extent and severity of SCI will include tests for feeling the sharpness of a pin prick and for feeling being touched lightly on the skin over the entire body. Patients will also be asked to move various muscles of the arms and legs.

 

Following a complete evaluation and any urgent treatments to stabilize the body, the patient is X-rayed to determine the type and exact location of all injuries. In addition to regular X-rays of the spinal bones, CT Scans may be performed to obtain more detailed three-dimensional pictures of the vertebrae, of abdominal organs, and perhaps the head. MRI Scans are also commonly done to show different detail about the injury to the spinal cord and brain. Angiograms also may be done. These give pictures of major arteries in the body and are taken by injecting dye into the blood vessels. All these studies may be needed to evaluate internal bleeding or injuries involving blood vessels.

 

·        Acute Medical/Surgical Care

 

Most patients with acute SCI are admitted to Intensive Care Units (ICUs). These units have many nurses for each patient and monitoring equipment to constantly assess key body functions, such as breathing and heart beat.

 

Most patients with SCI will have intravenous catheter lines to bring fluids and medications into the body. For example, within 24 hours of injury, patients will receive high doses of intravenous steroids. This medication helps the body to heal spinal cord damage and promotes recovery. Patients often will have rubber catheters to drain urine from the bladder, and they may have tubes leading from their nose or mouth into their stomach so they can be nourished.

 

The acute medical team's first major goal is to make sure the patient survives. Its second major goal is to decide if surgery on the spine will be helpful. ICU patients have access to specialist surgeons, such as those who operate on the spine.

 

·        Spine Surgery

 

Using X-rays and other imaging studies, neurosurgeons and orthopedic surgeons may decide to operate on the spine. They have two possible aims for operating shortly after SCI. One is to remove any damaged bone, clotted blood, or other body tissue that may be squeezing against the

 

spinal cord. Removing this pressure may not assure recovery of the spinal cord, but it may help the body heal nerve damage more quickly.

 

Their second aim may be to stabilize the spinal column. A major fracture or dislocation of spinal vertebrae with tearing of surrounding ligaments may make the spinal column unstable. The injured spine may not be able to support the body in an upright position.

 

In time, most injuries to the spinal column will heal after a prolonged bed rest and preventing movement of the injured bones.  However, operating to stabilize the spinal column may allow a patient to get out of bed and move around sooner and lead to a quicker return home.

 

·        Post Surgical Care

 

Even after surgery to stabilize the spine, most people with SCI will need braces, neck collars, or other devices that prevent movement of the spinal column when a patient sits upright. Some types of spinal fractures may heal by only using immobilizing devices. Halo vest fixation may be used for patients with neck fractures either after surgery or in place of surgery. The "halo" refers to a metal ring that is attached to the skull by pins placed against the skull. Vertical metal bars then attach the metal ring to a vest worn tightly around the chest. This special brace prevents all neck movements and stabilizes the cervical spine while the patient is sitting up.

 

Continuing Medical Management

 

·        Breathing

 

Many people with SCI have difficulty breathing in the early phases after injury. This difficulty may result from paralysis to breathing muscles, from chest injuries, or from prolonged anesthesia during surgery. In the early stages, patients with SCI are at great risk for pneumonia or partial collapse of the lungs. Respiratory treatments are often given to encourage deeper breathing. Special efforts are made to promote coughing to get rid of any fluids in the lungs. If stomach muscles are paralyzed, the patient may need assistance with coughing.

 

Patients who are unable to breathe deeply enough may have an endotracheal tube placed through the mouth or nose and extends from the back of the throat into the windpipe. This tube may be connected to a ventilator. People who need prolonged help from a ventilator are often given a tracheostomy operation. This operation puts a breathing tube directly into the windpipe. The advantage of a tracheostomy tube is that is more comfortable than the endotracheal tube in the back of the mouth or nose and throat. A person can use a variety of techniques to talk and better communicate with the mouth and tongue after the endotracheal tube is replaced  by a tracheostomy.

 

·        Bladder Management

 

A plastic or rubber catheter, known as a Foley catheter, is usually placed into the bladder through the urethra initially after SCI. It remains in place until the patient's general medical condition has

 

stabilized. Sometimes a tube is placed directly into the bladder through the lower abdomen. This tube is called a suprapubic tube. Both types of catheters let urine drain into a collecting bag. After a person's condition has stabilized, he or she may begin intermittent catheterization, where urine is removed from the bladder through a straight catheter every three to six hours. Any of these urinary drainage techniques may be continued during rehabilitation or after hospital discharge. A patient may learn many other means of draining urine from the paralyzed bladder and many ways to recover normal urination. When newly-injured and throughout life, people with SCI are at great risk of developing infections and other problems with the bladder and kidneys.

 

·        Gastro-intestinal Management

 

Patients generally cannot begin to swallow and take food until there are no problems with the throat or with breathing. They also must wait for the return of automatic contractions of the intestines. This is usually indicated by bowel sounds that can be heard with a stethoscope over the abdomen. Most people with SCI will need special stimulation techniques to evacuate stool from the lower bowel. Special techniques for bowel evacuation or bowel program must begin within the first week after injury, and great effort must be made to prevent constipation or incontinent (involuntary) bowel movements throughout later care and recovery.

 

·        Skin Care

 

Patients who have a loss of feeling in the skin of their lower body are at risk for skin breakdowns. These breakdowns are also known as bedsores, decubitus ulcers, or pressure sores. Prolonged pressure to the skin that lies over bone and gets squeezed between the bone and the bed is what causes bedsores. Friction from sliding over bed sheets can also irritate the skin, as can wetness from stool and urine.

 

A patient who cannot easily move or wiggle while in bed is at risk for bedsores over the lower spine, the sacral bone, the buttocks, the feet, and the sides of the hips. Nurses must turn and reposition patients often, at least every two hours, to prevent pressure sores.

 

·        Pain Management

 

Patients with acute SCI normally do not have severe pain after their injured spine is immobilized. Severe pain may result from other injuries, from surgical procedures, from nerve damage, or from fear and isolation. Medication is given to reduce pain, but efforts should be made to reduce medications that interfere with clear thinking and judgment. Patients with new SCI must be able to think clearly, for they must learn a great deal about SCI and its consequences. They must understand the medical care system and their options for care and recovery, so that they can take an active role in decisions about their current and future care.

·        Joint Management

 

Soon after injury, patients should begin daily exercises that move the joints through their usual range of motion. These exercises can help prevent joint and muscle tightness that can later restrict movements and interfere with rehabilitation.

 

·        Circulation

 

Patients with new spinal paralysis are at high risk for blood clots in the legs. This risk comes from reduced circulation in the veins because the muscles are not pumping blood back toward the heart. Patients who are not bleeding or having surgery are commonly started on some type of blood thinning medication soon after injury. These thinners can help keep clots from forming.  They may also have plastic air bags wrapped around the legs that blow up and squeeze the leg muscles in order to pump blood out of the legs.

 

Preparing for Rehabilitation

 

Almost all patients with acute SCI will need rehabilitation to achieve their best recovery and optimal level of independent function. Most often patients are transferred to a rehabilitation setting when they begin getting out of bed. Unless they've had a tracheostomy, they should no longer need help to breathe.  They should be able to eat or have a stable means of getting nutrition. Their heart and circulation should be stable enough to allow them to sit up and move around. Their spine should be stable—with or without external bracing—and their skin should be healthy enough so that sitting up does not worsen any bedsores.  Some patients are ready for a rehabilitation setting within a few days of their injury.  For others, it may take weeks before they are stable enough to safely begin rehabilitation.

 

·        Choosing a Rehabilitation Setting

 

Most often a Rehabilitation Hospital or Rehabilitation Unit in a hospital cares for people with new SCI. These settings are sometimes called "acute rehabilitation" hospitals to set them apart from settings in skilled nursing facilities. Many complications can develop in people with new SCI, so it is often wise for them to be cared for at a SCI Center (see Resources for a list of SCI centers). These centers have a full range of services, including early surgery, comprehensive rehabilitation, and follow-up care.  The Council on Accreditation of Rehabilitation Facilities (CARF) has a strict accreditation process to ensure rehab centers meet high quality standards.  Check to see if your rehab facility is “CARF Accredited.”  (See Resources: Rehabilitation)

 

When selecting a facility, look at the number of people with new traumatic SCI that it sees in a year. Those that see thirty or more spinal cord injured people a year generally are skilled in caring for people with traumatic SCI. The staff should also work closely with experienced surgical and medical specialists who are interested in SCI-related conditions.

 

People in less populated areas may be concerned about having rehabilitation in a facility that is far from family and community supports. Generally, the advantages to being in a specialized SCI center out-weigh receiving frequent emotional support from family and friends in the home community. The more severe the extent and severity of SCI, the more this general principle applies.

 

Patients with injuries or complications may need a prolonged period of immobilization. They may be cared for in a sub-acute setting that is related to a SCI center program. This may be an appropriate intermediate step before comprehensive inpatient medical rehabilitation in an "acute rehabilitation" setting. Prolonged rehabilitation therapy services—physical therapy, occupational therapy, recreational therapy, vocational therapy—may also be given in a sub-acute setting after the high risk of medical complications is over and major medical problems have all been stabilized.

 

Communicating With Your Healthcare Team

 

People with new SCI and their families or friends may find it hard to obtain information about their SCI and about proposed treatments. It is important to know whom to ask for what types of information. The following points will assist you in obtaining the information you want.

 

·        Who Is In Charge?

 

All patients who are hospitalized have one identified attending physician. The attending physician is the doctor with overall responsibility for a patient's hospital care. Tell the nurses or other healthcare professionals that you want to speak to your attending physician and to know his or her name. Generally after an acute SCI, the attending physician is a trauma surgeon, a neurosurgeon, or an orthopedic surgeon. While patients are in an Intensive Care Unit they may also have a physician who is an internal medicine specialist. Often several physicians will work as a team. If surgery is performed, the surgeon usually becomes the attending physician.

 

Patients and families always have the right to speak directly to the surgeon doing any proposed surgery. Patients are always entitled to a second opinion for any elective surgical procedure. Ask a surgeon if a proposed surgery is elective. If it is, there is always time for a second opinion. If a procedure is not elective, it should be clear what makes it urgent or emergent. Almost all procedures for spinal stability are elective. When considering different surgeons or surgical opinions, you may ask about a physician's board certification. Does he or she have advanced training in spine surgery? Membership in specialty society? Experience with similar injuries? A volume of SCI cases seen annually? SCI organizations and their special Hot Lines can offer more information.

 

·        Asking About Prognosis

 

You should ask your attending physician about you chances of recovering from spinal paralysis. You may also ask the most knowledgeable and experienced specialists working on the healthcare team. Do not expect clear answers during the first few days after injury. Doctors are understandably concerned about not frightening people or destroying their hopes for recovery. Recovery from SCI is never 100 percent predictable. By a few weeks after the SCI, physicians can be more accurate about the chances for recovery. Detailed questions about recovery and the likelihood of regaining independent functioning, such as walking, are often best asked after the physicians have completed their initial evaluations.

 

·        Was My Spinal Cord Severed?

 

This is a common question after SCI, but it is not a very helpful question. Most patients with permanent paralysis do not have a severed or completely cut, transected, spinal cord. Most SCI's occur along with spinal fractures, so spinal cord tissues are most often crushed; it is uncommon for the cord to be partially cut or pulled apart. You will get more precise news about your likely recovery a few weeks after your injury. Exams during your recovery will help your physician better assess the extent and severity of any loss of feeling and movement.

 

·        Learning About Options

 

Most of the medical problems (often called “secondary conditions”) people with SCI face can be managed or prevented.  Ask the nurses for written resources such as books, pamphlets, manuals, or videotapes.  These will help you to learn about SCI and the common secondary conditions, such as pressure sores, urinary tract infections, chronic pain, etc., associated with it.  The materials will also provide specific strategies to manage and prevent secondary complications.

 

·        Getting Help for Communication Problems

 

If you have trouble getting information, talk to the social workers assigned to work with Intensive Care Units teams. Or mention the problem to the nursing staff, particularly nursing supervisors or clinical specialists. These people can also help you make a list of questions for busy physicians, and tell you which physicians are in the best position to answer specific questions. Nurses and social workers may also arrange times for families and various members of the physician team to meet.

 

·        Planning for Next Phase of Care

 

The day will come when you will be discharged from an acute hospital setting and transferred to a rehabilitation setting. A nurse, case manager, or a social worker working with the acute care trauma team will arrange the transfer. This person can help you get specific information about options for rehabilitation settings and can answer questions about costs and insurance. People on the acute care physician’s team may also discuss the pros and cons of various rehabilitation facility options and put you in touch with various community agencies or national SCI advocacy groups.

 

Medical Care After Discharge

 

After discharge, it is very important to have a physician who is familiar with your condition and who is readily accessible. These physicians are generally called a primary care physician (PCP) or the physician who will be called first with a new or urgent medical problem. It is best to have a PCP who is knowledgeable about SCI and its common medical problems. Often this is not possible in rural areas. If a person had a general doctor with whom he or she should had good rapport before the SCI, it is good to continue with this same physician. He or she should be willing to learn about spinal cord injuries and to work with a SCI physician specialist by phone or mail. Most SCI Centers have a follow-up program. This program includes regular re-evaluations of patient's medical condition and functional activities, including re-evaluations of their equipment.

 

It is generally wise for all people with chronic SCI to have a continuing relationship with a SCI specialty center or facility. They would generally turn to this facility for more serious or unusual problems associated with SCI. If a SCI Center is far away, more than one to two hours from a person's home, the patient must have a closer general physician. They can see this person first for urgent or more routine medical concerns. If serious questions develop, people are generally wise to ask for phone consultation or a transfer to the SCI Center. For some patients, it may be wise to continue their regular medical care and follow-up through the SCI Center and to limit their use of local healthcare to minor, urgent issues only.

 

Some people didn't have a doctor before their injury; others are moving to a new area. These people need help to find doctors who know something about SCI and its complications and who are willing to take SCI patients. A rehabilitation nurse or therapist may suggest some doctors. Groups that serve people with disabilities also may have information on local doctors. These groups can include a center for independent living (see Chapter 11), paralyzed veterans, the Easter Seals office, or county medical societies. State and national organizations that advocate for people with SCI may also be helpful.

 

 

See Resources:

 

·        Rehabilitation

·        Advocacy

·        Support/Self-Help

 

* All italicized words appearing in this chapter can be found in the Glossary Section.

 

 

Chapter Three

What Factors Affect Your Rehabilitation?

 

Cielo Dehning, M.D.                          Kim McGinnis, OTR

Linda Bornheimer, CRRN                 Dana Solomon, OTR

 

 

What is Rehabilitation? 

 

Rehabilitation, or rehab, is defined as the process to develop people to their fullest potential. This potential can be physical, psychological, social, vocational, or educational, and can include areas of personal interests and hobbies. For a person with a spinal cord injury (SCI), this development must match the person’s physical abilities and be suitable in their environment. So the person with SCI and those concerned about care must set realistic goals.

 

A rehab program should address a number of issues. It should look at prevention—how to keep healthy—and how to detect health problems as they arise.  When such problems occur, the rehabilitation plan will help the person seek referrals for inpatient or outpatient care or even an extended-care facility.

 

Rehabilitation programs educate people about their injury and work to restore as much function as possible. Through practice and experience, people learn new skills and learn how to prevent complications, such as infections. Rehabilitation seeks to make the injured person as independent as possible, and it increases the person’s quality of life.

 

Rehabilitation medicine takes a comprehensive approach to medical care and looks at the whole person. It also uses the combined expertise of an interdisciplinary team. This team is defined as a group of health care professionals from different backgrounds or disciplines, who share common values and objectives. A typical team includes several people. The rehabilitation physician, or physiatrist*, who has received special training in the area of physical medicine and rehabilitation; a case manager; physical, occupational, speech and recreational therapists; a nurse, a nutritionist, a staff psychologist, and perhaps a social worker or case manager.  Other professionals are included as the need arises.  This team approach provides diagnosis, goal setting, problem solving and treatment. Clients and their families also are an important part of a successful team approach and process. 

 

The Rehabilitation Team and Its Functions

 

In certain settings, such as an acute inpatient rehabilitation unit, this interdisciplinary team may be assigned to work with SCI clients. The team members may have specialty training and experience in spinal cord care and often they work on a dedicated spinal cord unit.

 

·        Physical Care

 

The primary physician, or physiatrist, evaluates the client, prescribes treatment, obtains the necessary consultations and monitors the patients needs. His or her goals are to maximize the client’s abilities and to avoid further complications.

 

The primary physician talks with all concerned about the injured person’s care. During hospital rounds, he or she talks with the referring physician, the treatment team, and the client and family. The primary physician also coordinates follow-up rehab visits and connects with the client’s local doctor. He or she prescribes outpatient or home-based therapies and any needed medical equipment.

 

·        Nursing Care

 

Nurses teach clients and family members about the effects of a spinal cord injury and care for clients during their recovery.

 

Rehabilitation nurses work closely with all other treatment professionals and provide moment-to-moment care for the SCI client. They monitor any changes in the client’s medical and neurological condition. They work on bowel, bladder, and skin care issues;  they give medications and other medical treatments, and they supervise eating for those clients who may have swallowing problems. They assist with hygiene, dressing, and routine activities of daily living, and provide in-room activities that enhance what the client learned in formal therapy.

 

·        Case Management (CM)

 

The case manager keeps the client, family, and funding sources, such as insurance companies, aware of the client’s rehab program, expected length of stay, and discharge plans.  The case manager coordinates team and family conferences. At these conferences, families learn about the extent of the injury, plans for treatment, and long-range planning issues. The case manager wants the client to be satisfied with the program and wants to help ensure quality of care.

 

The manager also works with the client, family, and insurance company. He or she wants to make sure the client gets needed services and equipment.  She or he reviews the coverage plan with the client and family and may suggest other funding options if the insurance plan doesn’t cover all that’s needed.

 

Discharge planning starts upon admission to the rehabilitation facility.  Client and family are regularly consulted about the discharge plans.  They will also learn about the next step after discharge, such as outpatient or home-health therapy, and community resources.

 

·        Physical Therapy (PT)

 

Physical therapy (PT) seeks to improve overall mobility. This improvement can range from simple activities, such as rolling in bed and transferring, to maneuvering power and manual wheelchairs in a variety of settings. The physical therapist addresses balance, coordination, endurance, strength, joint mobility, and safe and healthy movement.

 

PTs, often with occupational therapists, make home visits and suggest ways to modify the home to improve independence and safety. Physical therapists also work with the physician to teach clients how to use assistive devices that can help with mobility.

 

Before a client begins a therapy program, a PT does an evaluation. The PT evaluates how much or little sensation the client has. The PT will look at the client’s movements and try to answer some questions. How much control does the client have over large muscle movement, such as in the arms or shoulders? How much fine muscle movement does the client have, such as in the fingers and wrists? How strong is the client’s grasping strength? How much range of motion does the client have in the joints of the upper arms or hands and fingers? What is the client’s overall muscle tone and strength?

 

Once the PT has this information, the therapist can help the family and client set realistic goals and to answer some important questions. Will the client be able to return home? Return to a job or school? What skills or tasks will the client have to learn to achieve those goals?

 

Physical therapists also educate the client, family, and friends. Their goal is to help the client get back into the community to “live life” (see Chapter 5).

 

·        Occupational Therapy (OT)

 

The occupational therapist focuses on helping people care for themselves. By using technology and specially designed equipment, OT's can help people learn a number of important self-care skills. These skills include bathing, dressing, eating, grooming, and toileting. They can also help a person learn how to do daily tasks such as cooking, shopping, housecleaning and laundry, and paying bills and managing a checkbook. They will also help a client do things he or she enjoys, such as reading or other hobbies (see Chapter 6).

 

Assistive technology can help a person return to work, school or to engage in leisure activities or daily life tasks. The technology varies from low technology to high technology and is geared to meet the individual’s needs. Various forms of low-tech aids can include adaptive writing aids, feeding aids, and adaptive dressing or bathing aids.  High-tech aids can include voice-activated speaker phones or computers (see Resources section).

 

·        Speech and Cognitive Therapy

 

A speech therapist assesses a client’s communication skills. How well does the person listen, speak, read, and write? The therapist also looks at cognition skills—thinking, memory, and problem solving. An assessment identifies a client’s strengths and weaknesses and includes a treatment program that uses a person’s strengths and that decreases the impact of weaknesses. 

Some persons with SCI need special training to swallow and they need breathe support. The speech therapist will work with the client and other team members on a plan for continuous treatment and monitoring.  Patients on ventilators are taught breath support to assist in ventilator weaning.

 

Sometimes a SCI means the nerve and throat muscles have been damaged or no longer work properly. Using modified barium video swallow tests, the speech therapist and the radiologist can assess a person’s ability to swallow safely. They can also teach a client safe-swallowing skills.

 

·        Psychology Services and Psychological Adjustment

 

A big part of any rehab program is helping people address the psychological and emotional changes and adjustment that injury brings.  Social workers, rehab counselors, or psychologists can provide counseling to the client, family, and significant others. These professionals help with understanding the impact of a catastrophic injury. They also address the importance of the following treatment plans, emotional problems, and behavioral adjustments. This counseling may be with the individual, family, or group setting.

 

·        Pulmonary Therapy

 

The respiratory therapist addresses the client’s pulmonary needs. They care for clients on ventilators and help wean clients from the ventilator. They provide treatment and information on proper airway care, cough and secretion clearance, and infection precautions. They also teach safety in pulmonary management to the client and family.  Those who require long-term ventilator care get a home-teaching program.

 

·        Nutritionist

 

A nutritionist evaluates a person’s special dietary needs or restrictions. The dietitian looks at calories, protein and fluid intake, and helps determine the proper consistencies of food and fluid needs. He or she works with other team members to develop strategies that help the person eat well and safely.

 

Types of Rehabilitation Settings and Levels of Care

 

Rehabilitation may take place in a variety of settings and at different levels of care.  Someone new to rehabilitation may find these many options confusing.  However, your physician, social worker, or case manager will help you understand your choices so you can make an informed and proper decision about your care.

 

Listed below are broad descriptions of levels of care and settings in which rehabilitation can take place.  Look at them as a continuum of available care that you may, or may not, need during your entire length of treatment. The descriptions are brief and only meant to be a starting point as you consider your options.

 

 

·        Acute Inpatient Rehabilitation

 

Acute inpatient rehabilitation can be provided in a rehabilitation unit within a general hospital or in a free-standing rehabilitation hospital.

 

Traditionally, rehabilitation care has been provided in the acute rehabilitation setting and this remains the predominant choice. It offers the most intensive and comprehensive level of rehabilitation care and services. This type of facility is appropriate for any rehabilitation diagnosis, and it can manage multiple levels of complex medical and rehabilitation needs. It is the best for those catastrophically injured and disabled, and should provide staff experienced in spinal cord care. Oftentimes a special spinal cord unit is available.

 

Clients in this type of setting must be able to tolerate and need three hours or more of therapy a day. They must need a wide range of therapy services, have a reasonable expectation of functional improvement, and have an anticipated discharge to home or an assisted living setting.

 

Overall, an acute setting provides the most comprehensive and specialized approach to spinal cord injury rehabilitation care. The goal is to maximize physical function and independence to the highest level possible. 

 

Sub-acute care is an interim stage of care that is less than a full rehabilitation program, but has a higher level of skilled interventions than a skilled nursing home unit.  Some nursing homes offer this level of care to more medically and functionally involved persons who are not appropriate for acute hospital care.

 

·        Skilled

 

A skilled level of care is an additional level available for those clients who cannot qualify for, do not need, or are not yet ready to tolerate the intensity of services provided in an acute rehabilitation facility. A skilled setting is used as a step-down level for therapy services and where functional progress is expected, but perhaps at a slower level.

 

The skilled facility differs from an acute rehabilitation level in several ways:

 

Providing a less intensive level of services for less cost.

Providing rehabilitation services, but generally less than three hours a day.

Providing wound care, dressing changes, and initial oxygen therapy and suctioning.

It provides opportunity for family education.

Providing ongoing medical management.

Evaluating and managing an overall plan of care.

The client must have had a three-day, acute stay in a general hospital.

 

The client must have had a three-day acute care hospital stay to qualify for a skilled admission.  A discharge to home or assisted living is not required.

 

 

·        Long-Term Acute Hospital

 

A recent addition to a rehabilitation setting is the long-term acute level. This is a specialty hospital for the person with medically complex needs that require a high level of medical care, physician monitoring, and support services. This setting is often used as a continuation of a general hospital stay. Rehabilitation needs, if any, are often low. This level can be used as a step toward an acute rehabilitation setting, if the client progresses to the point where he or she can participate in therapy.

 

Clients who are catastrophically-injured, but who are medically stable, or clients who are on ventilators, may be best served in an acute rehabilitation hospital setting. This is especially true if rehabilitation, not medical treatment, is the primary need. The overall length of stay must be at least 25 days.

 

·        Day Treatment or Day Program

 

Day treatment is an outpatient program that extends the services in an acute rehabilitation hospital. Day treatment differs from an acute inpatient rehabilitation setting only in that 24-hour nursing coverage is not required, and clients go home in the evenings and on weekends.

 

Day treatment offers several advantages. It provides three or more hours of therapy. The client receives meals, rest times, medical supervision, and a specialized program for SCI. Day treatment is also cost effective.

 

At this level, re-integration into the community can be maximized, and overnight stays can be provided in special circumstances.

 

Day Treatment may be preferred for catastrophically-injured clients who need staff expertise in SCI care, a specialized program approach, and intensive community re-entry.

 

·        Transitional Care

 

Outpatient transitional care is for clients who are not quite ready to go home after their general hospital, acute rehabilitation, or skilled level of care stay. Overnight stays are possible. Therapy most often is less intensive and focuses on general therapy needs.

 

·        Outpatient

 

Outpatient services may be offered in a general hospital, acute rehabilitation hospital, long-term acute hospital, or clinic setting. Therapy is offered for several days, up to five days a week, for several hours a day as part of the facility’s continuum of care.

·        Home Health

 

Rehabilitation services may be provided in the home for clients who cannot leave to receive services except for a physician visit. Home health visits require a physician order and may include nursing, therapy, social service, and personal and home care services. These services may be provided by independent home health agencies or as part of a community-based, general hospital or acute rehabilitation facility.

 

How Do You Qualify for Rehabilitation?

 

Many factors affect how a client qualifies for a particular level of rehabilitation care, as well as the type of settings where care is given. Your physician, social worker, or case manager will help you understand the guidelines used by your insurance company and by various facilities, so that you can make the most informed and appropriate choice for your situation.

 

All the factors listed below will influence the type of setting and rehabilitation level of care you need:

 

·        Insurance Coverage

 

You can be covered by a private insurance company or by Medicare or Medicaid.  Each of these plans set limits on the amount of money they will pay for medical care and rehabilitation.  What level of care you can receive and for how long is set by the agency that will cover your costs.  Your social worker can help you understand what your program covers.

 

·        Physical Ability

 

The coverage agency—whether run by a private insurance company or by the government—will look at your physical progress. The agency will assess how well you can participate in your care and how much and what level of therapy your body can tolerate. The agency also wants to know what kind of progress you are making. Answers to these questions will help the agency that pays the bills decide for which setting it will pay and for how long. So, your ability to make progress during rehabilitation will greatly affect the type of services you will receive.

 

·        Facility Requirements

 

Many facilities set their own guidelines for whom they will serve.

 

·        Level of Care

 

Where you can receive care and for how long also will depend on the level and type of care you need. One setting may be better able than another to meet your level of need.

 

 

 

·        Length of Stay

 

This is a term that means how long you will, or have stayed in a hospital environment (in terms of number of days).  The National Center on Model SCI Statistics keeps records on patient’s length of stay.  These are very important to the primary care payor, who will reimburse the hospital for medical expenses.

 

·        Your Resources

 

This can mean a variety of things.  Most obvious is finances, which includes money on hand, as well as medical and health insurance.  In addition, resources can include things that you cannot place a price on, including emotional and personal support from family members, the clergy, and friends.

 

·        Your Final Destination

 

Where you plan to live after you have finished your rehabilitation also affects decisions about where you will receive care. For example, people returning to their own homes may receive a different level of therapy in a different setting than people who will be permanently moved to a nursing home.

 

Life Care Planning

 

A plan for your future care is called a life care plan. Attorneys and insurance companies often ask for a client’s life care plan. Most often a patient or the family does not have a life care plan.

 

This plan estimates future expenses for the person’s care. It is based on the patient’s past history, including pre-injury medical problems, and on the reasoned estimate of professionals trained in making such assessments. These professionals may include physicians, nurses, therapists, or other health-care professionals.

 

A life care plan anticipates, in today’s dollars, a person’s future medical needs and expenses of the patient, including day-to-day care and any equipment needs, as well as their replacement costs. Medical needs and expenses include not only doctor visits, but also any anticipated hospitalizations, surgery, medications, nursing care, and expenses for therapy related to the injury.

 

Tips on Choosing a Rehabilitation Facility

 

·        Level of Care

 

Look at several facilities and gather information on each. What level of care is being offered—acute rehabilitation, sub-acute, or skilled? Is the facility approved to offer SCI care?

 

·        Coverage Issues

 

Does the facility have a contract with your insurance company or can it contract a case-by-case basis with your company? If you have Medicare, does the facility have a Medicare contract? If

 

you have Medicaid (state aid), does the facility accept it? Are there any limits on length of stay? Will the facility review your policy and coverage with you?

 

·        Program

 

How many spinal cord clients does the facility see in a year? Is the staff experienced in treating all levels of spinal cord care?  Is there a specialized, consistent, inter-disciplinary SCI team?  A specialized SCI unit?  What is the general age group of the clients you would associate with? What are the average number of hours of therapy a day and what types are provided?  What is the average length of stay for your level of injury? Is there a day or outpatient component?

 

Ask for a brief explanation of program goals, structure, and content. If a client becomes medically unstable, are they treated on site or off? Are there laboratory, pharmacy, and radiology services in house? Are there nurses and respiratory therapists present 24 hours a day?  Does the facility take people on ventilators? Is there a physician on-site and for how many hours a day? How often does the physician make rounds? Are there sub-specialists available on staff if needed?  Can you tour the facility and meet with the team prior to admission?  Can a parent stay with a child in the room or family members with adults? What is the availability of on or off-campus housing? What affect will geographical distance have on the client and family? Are activities planned for after hours and on weekends?

 

·        Program Structure/Services

 

Who are the team members and what are their roles? Is there a medical director? Are there team and family conferences? How often? What is the nurse-to-patient ratio on the floor for each shift? Is the family and client considered part of the team? Is the family encouraged to visit and participate in planning? Is the majority of therapies individualized or in a group setting? Does the program have the following components:

 

¨      Education classes and manuals.

¨      Can families attend the program?  What topics are included?

¨      Peer support group.

¨      Counseling.  By whom?

¨      Community re-entry.

¨      Support group.

¨      Pain management.

¨      Assistive technology.

¨      Neuromuscular improvement program.

¨      Driving program.

¨      Urodynamic fertility and testing.

¨      Ventilator care and weaning.

¨      Orthotics and prosthetics  .

¨      Seating system prescription.

¨      Sexuality counseling.

¨      Personal care assistant procurement and training.

¨      Vocational rehabilitation.

¨      Recreational therapy.

¨      Home visits with day or weekend pass available.

¨      Community re-entry program.

 

·        Discharge Planning

 

Are personalized self-care educational manuals given at discharge?  Is there a formal discharge plan?  Does it include the following?

 

¨      Contact the local physician and therapists who will continue rehabilitation for follow-up.

¨      Contact with local independent living center.

¨      Arrangements for evaluation of home for modification.

¨      Referral to local specialists, if needed.

¨      Referrals to other needed community resources.

¨      Regularly scheduled follow-up visits with rehab facility.

¨      Urologic evaluation.

¨      Seating system review.

¨      Laboratory and radiology testing.

¨      Thorough vocational rehab assessment and referral to vocational rehabilitation program.

 

Finances

 

When reviewing your financial situation, look at your income and medical coverage. To assure your continued medical and rehabilitation care, and to provide yourself and your family with income assistance, you must clearly know what your income and coverage will be. SCI can damage your finances if you are not adequately prepared. Review these financial issues with your social worker or case manager. Follow their recommendations in a timely manner. Hard realities are tough to deal with, but they are necessary.

 

·        Income Sources

 

When you receive a disabling injury, you must look at two sources of income. Where will you find the income to meet your daily living expenses, and what agency or company will pay your medical expenses and your costs for ongoing care?

 

In Chapter 9, you will find good information about the income you might receive through Social Security, Medicare, and Medicaid. In that chapter, you will also learn how these programs can cover your medical and rehabilitation costs. In addition to these three common forms of support, you may be covered under some form of disability insurance. Short- and long-term disability comes from a private insurance company or through Workman’s Compensation.

 

Most often people purchase short-term disability through their employers. Short-term disability supplements the income of those who are unable to work for a short period of time. It covers the

 

period between when the person has stopped working and when a long-term disability policy starts. Illness or injury is covered under short-term policies.

 

Employers often provide long-term disability coverage. These policies assure you income if through illness or injury you cannot work for a long period of time. If you have such a policy, find out if its coverage is or is not tied to Medicare coverage.

 

Your health insurance also may continue after your injury if the insurance premiums are paid. Check with your insurance company to find out about your medical coverage. You want to know about your deductibles and co-pay, the money you must contribute to your medical costs. When you speak with your insurance representative, be sure to give correct and complete information about your diagnosis, your medical and rehabilitation needs, and your life care plan. Find out what your insurance company will provide. Take notes during this conversation and be sure and write down the name and phone number of the person you spoke with.

 

If you were injured on the job, you will receive some income through the Workman’s Compensation program. This program also provides medical coverage until you return to work or until you know your disability status.

 

Here are some things to remember:

 

¨      Make sure any organization that will provide services has checked your insurance benefits and knows your coverage. This will keep you from incurring large bills.

¨      Learn what other financial assistance is available through contacts with your social worker.

¨      Check your local community to see what organizations can help you (government offices/CILs).

¨      Contact your local center for independent living (see Chapter 11).

¨      Check your local vocational rehabilitation program. Vocational rehab provides many services to get a person back to work and school. Your city or state will have contact numbers (see your local phone directory).

¨      Your employer may also be of assistance. Some larger corporations set money aside for employees who incur hardship.

¨      If you are a veteran, you may have services available—contact your closest veterans hospital or Paralyzed Veterans Association (800) 424-8200.

 

See Resources:

 

·        Rehabilitation

·        Benefits/Financial

 

* All italicized words appearing in this chapter can be found in the Glossary Section.

 

Chapter Four

The Social Worker in the Rehabilitation Setting

 

Donovan Lee, LSCSW

Kansas Rehabilitation Hospital, Topeka, KS

 

 

This chapter will explore the role of a social worker in a rehabilitation setting. One of the highest traditional social work values is to maximize client self-determination. This information will help the consumer ask informed and focused questions about spinal cord injury (SCI) from admission to discharge and beyond. 

 

Consumers can be their own greatest resource. Consumers have the following rights: to be treated with dignity and respect; to be given accurate and useful information about resources; to have their confidentiality protected; and to be encouraged to express their concerns and hopes. At the same time, consumers must take responsibility. They must participate in their rehabilitation to the fullest extent possible. They must read and ask questions about SCI and talk with their social worker and other members of the rehabilitation team to set treatment and discharge goals.

 

Role of the Social Worker

 

The social worker plays an important role in helping the consumer with a SCI and the family make a positive recovery and adjustment to life during and after rehabilitation.  This information will help the consumer understand what questions to ask and what help is available during and after rehabilitation.

 

The social worker is part of the health care team. He or she makes certain the consumer receives adequate information about the rehabilitation process and about what resources and services are needed. 

 

When consumers are admitted for rehabilitation, they and their families usually are just beginning to confront the possibility of a long-term disability. So the rehabilitation process needs to be goal directed, purposeful, and focused on ways to cope. The social worker will meet with the consumer and his or her family shortly after admission to determine strengths and concerns in the areas listed below:

 

1.      Family, marital, and social relationships.

2.      Money concerns.

3.      Vocational and leisure needs.

4.      Accessibility of the environment.

5.      Discharge plans and options.

6.      Drug and alcohol use.

7.      Emotional reactions and coping.

8.      Personal history.

 

In general, the social worker helps the consumer and family sort out these issues and find ways to manage them. The remainder of this chapter will go into more detail about these eight areas. The reader can use the information as a guide to what types of questions a social worker can answer.

 

·        Family, Marital, and Social Relationships

 

The suddenness of a SCI can be disruptive, confusing, and frightening. The social worker helps the consumer and family cope with this crisis and other stresses. Everyone can talk open about the impact the SCI has had on all important relationships.  A family conference is usually scheduled soon after admission. This meeting should include key family members and the rehabilitation team. The family will learn the consumer's medical status and the likely course of recovery. The information replaces fantasy and the unknown with reality.  This is an important issue for the consumer because successful rehabilitation depends on remembering and understanding many new skills.  At this time the social worker begins to help the consumer and family examine and perhaps redefine the role the consumer now plays in the family. These roles might include, but are not limited to, wage earner, parent, and sexual partner.

 

·        Money Concerns

 

As the consumer enters the rehabilitation phase, she or he usually has financial concerns. There may be uncertainty about health insurance, medical equipment and supplies, lost wages, and mounting bills. The social worker will go over different resource options with the consumer and family including those listed:

 

1.   Social Security

2.   Worker's Compensation

3.   Medicare*

4.   Medicaid

5.   Private health insurance policies

6.   Disability Insurance Protection, offered on policies and some credit cards.

7.   School Coverage Insurance, for injuries at school or during school activities or sports.

8.   Credit Life and Health Policies, available on mortgages, credit cards, and auto loans.

9.   Victims of Crime--if a person was injured during a criminal act. Check with your state's

      attorney general's office and inquire about a compensation program.

 

This is just a list to remind people what social workers can talk about.

 

·        Vocational and Leisure Needs

 

Early in rehabilitation, the social worker will talk to the consumer about referral to the Department of Vocational Rehabilitation Services (VR). A VR counselor screens the consumer and looks at the extent of disability, expected recovery, and the consumer's past vocational

 

experience and future interests. Vocational Rehabilitation can also provide vocational testing and training. In addition, the VR counselor can also determine eligibility regarding funding for equipment including a wheelchair.

 

·        Accessibility of the Environment

 

Being able to move about the home and community is an important part of overall planning.  Members of the rehabilitation team will visit the home to evaluate accessibility and to recommend solutions. The social worker can refer the consumer to contractors who can make changes at the consumer's home.

 

The social worker also has information about the American's With Disabilities Act (ADA). This act is designed to eliminate discrimination against persons with disabilities in the areas of employment, public accommodations, programs and activities, or state and local government including public school and public transportation, telecommunications, and public transportation. If needed, the social worker can also work with the consumer to find accessible and affordable housing. Ask the social worker about the nearest center for independent living (see Chapter 11). These agencies provide a wide range of services including independent living skills training, advocacy, peer counseling, and information and referral. The consumer may also want to inquire about a license plate or placard for people with disabilities so he or she can park in accessible parking spaces.

 

·        Discharge Plans and Options

 

It is important for the consumer and family to consider discharge needs soon after they become oriented to rehabilitation and can think about re-entry into the community. Through family conferences and education, his or her needs can be anticipated and the resources capable of meeting them can be identified. Likely, they will continue therapy after discharge and there will be medical follow-up. The social worker becomes the discharge planner who will make referrals to agencies such as outpatient clinics, home-health providers, and others as required.  Some consumers have special discharge needs. For example, a consumer who is in school will need to meet with school officials to coordinate school re-entry.

 

Some SCIs include a blow to the head, which can cause mild brain injury. The consumer may not be aware of subtle changes in memory and thinking. It may be necessary for the family to share these concerns with the rehabilitation team and to ask about having the consumer evaluated by a neuropsychologist. This specialist can test for brain damage and help the consumer and the family learn how to deal with thinking and memory problems.

 

·        Drug and Alcohol Use

 

Several studies have shown there is a strong connection between the use of drugs and alcohol and SCI. A high percentage of SCI survivors were under chemical influences at the time of the injury.  The social worker will assist the consumer and family in deciding if substance abuse treatment is needed. He or she will also provide the names of counselors and treatment programs.

·        Emotional Reactions and Coping

 

SCI is different than some other major life changes because it comes without planning. No previous experience compares to this injury, and there is usually a high sense of loss of control. The emotions surrounding this injury create feelings of powerlessness in the consumer and family. They have little knowledge and are uncertain about how to deal with the health care system. Since SCIs usually occur with young adults, the injury happens at a time when the survivor is in the process of preparing to leave home or has been independent for only a short period. The injury can create physical, emotional, and financial needs that produce greater dependency on families and social services. The social worker can support the consumer and family's efforts to grapple with these needs. Counseling may be recommended to help the family see the difference between the consumer's initial physical dependence and intact mental and psychological skills. It is important that the family understand that while the consumer has lost some physical abilities, he or she still has other strengths and abilities that can help them compensate for what was lost.

 

·        Personal History

 

Part of the social worker's early intervention is to learn how the consumer dealt with life prior to the SCI. It is important for the rehabilitation team to know how the consumer coped with life stresses and how these skills can be used to deal with the SCI. A person's coping history may indicate the need for a mental health professional to deal with more serious emotional problems such as suicidal thoughts or mood disorders.

 

Working With Insurance Case Managers

 

Over the years, commercial insurance companies have turned to a 'managed care' or 'case management' approach to help control costs and to assure the appropriate use of medical and rehabilitation interventions. It may not be long before government payers such as Medicaid, Medicare, and the Department of Veteran's Affairs also begin to use some form of managed care. If your health insurance company uses a case management approach, a case manager will be assigned to monitor progress, covered services, length of stay, and costs. It is likely the rehabilitation social worker will have made contact with this person to verify benefits for rehabilitation.

 

It is common for the rehabilitation facility to send the case manager a copy of the consumer's weekly team conference reports. These show the physical improvements and discharge planning activities. The case manager may attend team conferences, family conferences, discharge planning meetings, and even therapy sessions. If the case manger is not in the area, telephone conference calls can be used to include the manager in all of these important meetings. The consumer and family should feel free to ask the case manager questions about the following issues: length of time that inpatient and outpatient services will be covered; the coverages for equipment and nursing or attendant care in the home; transportation allowances; mental health services; and information about the appeal process if the consumer needs services beyond standard coverage. The Paralyzed Veterans of America has a packet of educational materials available to anyone with a SCI. This packet includes the booklet, "A Guide to Managed Care." It is an excellent resource and can be obtained by calling the telephone number listed at the end of this chapter.

 

How to Find a Social Worker

 

If the rehabilitation team does not include a social worker, someone will be assigned to cover many of the same duties. This person may be called a discharge planner or case manager. These people will have similar skills as a social worker and can provide many of the same services. The consumer may request a social work consultation if there are specific needs not being met by the rehabilitation team. After leaving the rehabilitation setting, it is possible to locate a social worker near the consumer's home. Take the following steps to find a social worker: 

 

1.  Contact your local hospital and ask for the Social Work or Discharge Planning Department.

2.  Use the telephone directory and look under Social Work or Rehabilitation Services.

3.  Contact the nearest independent living resource center.

4.  Call the area Community Mental Health Center.

5.  Contact your state's social services office and ask for a chapter of the National Association of

     Social Workers. It can give you a list of local social workers.

 

When using any of these resources, be clear about the type of help you need so that the agencies can refer you to someone who best meets those needs free of charge.

 

 

See Resources:

 

·        Support/Self Help

·        Advocacy

 

* All italicized words appearing in this chapter can be found in the Glossary Section.

 

Chapter Five

The Physical Therapist

 

Kenneth A. Gerhart, M.S., RPT

 

 

Physical therapists* (PT) use their understanding of anatomy and physiology, physics, exercise principles, psychology, and health to treat people who have injuries, chronic problems, and pain. They help their customers regain lost strength, flexibility, stamina, and coordination. And, perhaps most important to you, PT's use their skills to help people with disabilities learn ways of adapting and compensating. These new ways will help them be as physically independent in their day-to-day lives as possible.

 

Physical therapists who treat people with spinal cord injuries (SCI) often have different skills, philosophies, and experiences than physical therapists who treat people with problems like back pain, knee injuries, and shoulder strains.  All have graduated from an accredited college or university program and have about the same education and medical training. But the skills they have developed since leaving college are those that matter most to you as a spinal cord injury survivor. In fact, while most PTs focus on making people's problems go away, physical therapists that work with SCI survivors typically must help their clients cope with, adjust to, and compensate for disabilities that may never go away.

 

While PTs are pretty easy to find, PTs who understand spinal cord injury are a little harder to come by. This chapter will provide you with the information you need to find the right physical therapist for you.

 

Rehabilitation

 

Almost all people with new, severe spinal cord injuries will need to and want to go to a rehab program where they will need several weeks, perhaps even several months, of in-patient care. Here a team of professionals will teach you the skills you need to care for yourself, move about, and return to your old life with as much independence, confidence, and enjoyment as possible.

 

A PT is an important member of this team. Different teams in different rehabilitation hospitals may define the professionals' roles differently. For example, between PTs and occupational therapists, in particular, there can be much overlap (see Chapter 5). This overlap is not a problem, and it almost always benefits you. The more these professionals overlap, the better they can work together and complement one another. What's important is that they work with you toward the same larger goals: those goals are your goals.  More information about rehabilitation programs and about how to find the right program can be found in Chapter 3. This chapter specifically looks at physical therapy and physical therapists, and at a PT's role in a more general

 

 

sense. The information here will be especially useful if you need to go "shopping" for a PT for outpatient therapy, for training in your home, or in a rural area that does not offer a comprehensive team rehab program.

 

The PT of Your Dreams

 

If a spinal cord injury physical therapist had to be described in just one sentence, it would be:  “A PT is someone who helps you figure out how to get from point A to point B quickly, safely, efficiently, and happily.”  Let’s take this definition apart.

 

First, getting from point A to point B means a lot of things. Basically, it refers to all the different skills and activities your PT should be able to teach you or help you master. It could mean getting from a lying down position to sitting up or from sitting to standing. It can be going from the bottom of the stairs to the top or into and out of a car. It can be getting across a room, or a lawn, or a college campus, or even from your house to the airport and onto an airplane. It could also mean going from being discouraged and overwhelmed (point A), to being satisfied, confident, and ready to move on with life (point B).

 

Because spinal cord injury often means muscle weakness or paralysis, a wheelchair is a likely part of the picture.  Teaching you how to get around using a wheelchair and how to get in and out of that wheelchair should be a big part of the therapist's job. Moreover, a really good PT can "put it all together." If your physical therapist knows and understands what it is you need to do, he or she should be able to teach you how to get from point A to point B and every place in between. For example, a good PT can teach you how to get from a wheelchair (point A) into bed (point B). A really good PT will know that "getting into bed" means you probably also want to go to sleep. The PT will anticipate all of the other pieces: getting undressed, preparing your bladder management system, pulling up the covers, setting up a telephone you can use from the bed, and even turning off the light. Hopefully, he or she will know how to work with other team members like occupational therapists and rehabilitation nurses to teach you all these things. If you're in a setting where these other professionals are not available, the PT alone will be able to help you problem-solve these things.

 

Spinal cord injury often means wheelchairs and other types of equipment will be involved, so “quick,” “safe,” and “efficient” enter the picture. For example, a loss of sensation is part of a spinal cord injury so, your PT needs to teach you to care for your skin, avoid potential problems, and use equipment like cushions, padding, and specialized beds to protect that skin. Your PT will need to know which type of wheelchair (lightweight, wide, tall, power-driven, or reclining) is best for your needs. The PT will work with other team members, or independently if there is no team, to get your chair and teach you to use it.

 

Quick, safe, and efficient also implies that your PT is realistic. If your muscles are weak and you're likely to fall while trying to get into your wheelchair, your PT needs another plan. It may take you too long to complete a task or you won't be able to give your skin the relief it needs. Your PT should not only tell you, but should be ready with a fall back plan. Of course, quick, safe, and efficient also has to do with all those little things such as turning out the lights and pulling up blankets. These movements are easy to forget, but important to know.

 

Finally, we get to the "happily" part of that first statement. "Happy" sounds a little too simple, but it's there to remind you of an important characteristic you need in a PT: he or she needs to be committed to helping you meet your agenda, not his or hers. The PT of your dreams needs to realize that your agenda always means accomplishing a specific skill or addressing a specific need in a way that makes you happy. His or her goals should match yours. If your PT is determined to teach you how to get across the college campus, but your goal is to figure out a way to go fishing, then the "happily" is missing: Find a new PT!

 

Here are Some Key Characteristics to Look for in a PT:

 

·        A PT who works with spinal cord injured people should be practical.

 

Many people with spinal cord injuries have spent weeks, months, or even longer in physical therapy gyms where they strengthen muscles, stretch, and "work out." This may all be worthwhile, but all the strength in the world doesn't count for much if you can't use it in some way. Think of the child who wants to learn to play baseball. Does he stretch his shoulders, lift weights for his arms, and do leg exercises for the entire season? Or does he get in there and start to throw, bat, and run? You need both the exercise and the practice, but you need more of the practice, especially if you're trying to become more independent. Make sure you know what skills you want to learn, so that with every PT session you can see yourself getting closer to reaching those goals. Ask yourself and your therapist: "How does all this fit with my goal?" "How long should it take me to get there?"

 

·        Your PT should have lots of experience specifically with spinal cord injury survivors.

 

The PT’s experience should be with people with all levels of injury and with varying degrees of paralysis or weakness, both paraplegia and quadriplegia. That experience should also be with people in all stages of their rehabilitation. Perhaps the most important type of experience PTs need, however, is with spinal cord injury survivors who have been injured many years. These people have creative solutions and clever tricks to deal with their own needs, and they're able to give therapists a sense of what works in the real world. It is their experiences that give answers to questions like "How do I turn off the light after I've gotten myself into bed?”  “How do I push my wheelchair when it's icy?”  “How will I carry my books to class if I need to have both of my hands on crutches?”

 

These longer-injured people also help therapists get good at "envisioning" the future. From them, PTs learn to anticipate the long-term results of decisions and choices you make, and to take steps to prevent potential or future problems as well. For example, they learn to ask questions: Will changing the location of the axle on your wheelchair now decrease the odds of future shoulder pain? Will altering the way you transfer out of your bed lessen your chances of wrist pain ten years from now?

 

 

 

Here are some questions to ask your potential PT: How many people with spinal cord injuries do you work with over the course of a year? How long have they been injured? What happens to them after they leave you?

 

·        You and your PT should know how machines and equipment fit into the big picture.

 

High-tech exercise equipment, electrical stimulators, massage tables, machines that are used for various heat and cold treatments, whirlpools, and other types of equipment are often found in PT clinics. Should you be impressed by their number, size, expense, or newness? Not really. These machines can be useful if you have a specific injury that needs to be treated, such as a sprained shoulder, an injured elbow, or an aching neck.  But as aids to becoming and staying independent, learning new skills, or adapting to and compensating for your disability, they're probably not so useful.

 

More often the equipment to practice the skills you need can be found in the real world: beds, bathtubs, kitchens, car seats, airplane aisles, stairs, ramps, escalators. It's all the things you encounter day-to-day that create the obstacles and barriers between you and “point B.” You'll find real-world things to practice with in good rehab hospitals. You probably won't find them in the typical free-standing PT clinic, but you should find a willingness in your potential PT to seek them out. Will he go to your home? Your workplace? Will she run across the street to the restaurant to help you practice getting into a restroom or into a booth? Is he willing to borrow a friend's pick-up truck to help you learn how to get in? Will she track down a shopping mall that will let you sneak in and practice riding escalators with her? Ask your PT: What treatment areas will you use for me?

 

·        Your perfect PT should have a good working knowledge of the equipment that spinal cord injury survivors do rely on.

 

He or she should be well-versed in the devices and tools that will help you. These can include low-tech transfer boards, cushions, and modified footrests, and high-tech power wheelchairs, environmental control systems, and specialized orthotics. These will help make your activities of daily living easier. Your PT may not deal with these things on a daily basis but your PT should know where to go to find out more about them, how to obtain ones for you to try out, and where to purchase them. Ask:  What resources do you have for evaluating and ordering specialized equipment for me?

 

Finally, your PT should listen to what you need and see you as a whole person. He or she should acknowledge that you have a partner, a parent, or a friend in your life and this person also wants to be included in your treatment plan. Your PT should teach these people what you are learning.

 

Your PT also should accept that you have a mind of your own and should respect the things that you value. Your PT should not let his or her ego override your wishes. This is important. Suppose you were hurt a few years ago, and you've decided that pushing a manual chair hurts your shoulders. It slows you down. You're always late, and you're tired all the time. Even though you can push your own chair, you've decided you would like a power wheelchair, so you can make it around your college campus or to your job quickly, safely and efficiently. Moreover, you can pay for this new chair.

 

Your therapist tells you, "Sorry, but what you really need is to strengthen your muscles, build your endurance, and get motivated." When you get a comment like this, you need to know you can trust your therapist's judgment. You need to know when your PT is telling it like it is, and when his or her own ego is in the way. Is your PT afraid that switching to an "easier" chair will make him or her look less skilled as a therapist than those who get their people to push chairs that are more difficult?  Will it challenge her belief that less equipment is always better? Will he or she be threatened by a client who "calls the shots?" There really isn't a specific question to ask here. Instead, try to get a gut feeling about your potential PT. Does she seem like someone you can talk to easily?  Do you think he could treat you like an equal partner in your care?

 

Back to Reality

 

Guess what? There's no such thing as the Perfect PT, just like there's no such thing as the Perfect Spinal Cord Injured Person! So then, which professional characteristics are vital and which can you let slide? Here's some advice:

 

·        If you can't find a PT with specific spinal cord injury experience, find one who has worked

extensively with people who have had these types of neurological problems: strokes, developmental disabilities, or head trauma. PTs with this experience tend to focus more on teaching than on healing or curing.

 

·        A PT with creativity and flexibility is more important than one with a shiny new clinic

and lots of high-tech machines.

 

·        Often, PTs who have worked with clients in their homes and communities and who

have helped them find practical solutions to every day problems will have skills to apply to your needs.

 

·        A PT who is willing to listen to you and who is interested in your insights and experiences

will be better able to meet you halfway. He or she will problem-solve with you more than someone who already has all of the answers.

 

Obviously you can't always get everything you want. If you're an inpatient in a rehabilitation hospital, or even an outpatient, you may have little say regarding which PT is assigned to you. Few, if any, hospitals will encourage you to "test drive" all of their PTs. That's not the most efficient, effective, and fair way for them to deliver, and for you to receive, rehabilitation services. However, know that you do have options. If you truly don't think you're getting what you need, talk to your therapist. If that doesn't work, talk to his or her supervisor. Be specific about your own goals and needs; focusing on personalities is not likely to get you far.

 

 

 

If you are shopping for a PT in your community, call several and ask if you can stop by some time for a 15-minute tour.  As you're being shown around, try to ask some of the questions mentioned earlier.  Compare different therapists with respect to experience, philosophy, and how well you seem to connect.  Pick the one that seems like the best fit.

 

The Perfect Patient

 

Everything said so far puts all of the responsibility on the PT. However, as in love and marriage, it takes two to make a relationship work. The reality is, it's you, the spinal cord injury survivor, who has most to lose if the relationship is not a good one. So it's fitting to end with a few thoughts on what makes you the perfect client.

 

·        Do your homework.

 

If your injury is new, send family members on a fact-finding mission. Have them find out where others in your area go for rehabilitation and other services. They can check with other spinal cord injury survivors and their families and other health care professionals, or they can check with some of the national information centers like spinal cord injury "hotlines," various Internet sites, or the National Spinal Cord Injury Association.

 

If you've been injured longer, find out how other survivors have tackled problems similar to the ones you're facing. Ask them about therapists they've worked with or have heard good things about. Ask who they know who is skilled in the area that you're interested in or needing help with. Ask who they think would be a good "fit" for you.

 

·        Know what you want and accept responsibility.

 

Present your PT with specific goals you want to accomplish; don't leave it to him or her to tell you what you need. Give your therapist information, even if it's not asked for. Don't think it's his or her job to know everything, and don't assume he or she remembers everything. The truth is that it doesn't really matter whether you're right and the therapist is wrong. Because in the end, it is you and you alone who reaps the benefits and suffers the consequences of anything that happens during your therapy.

 

·        If your therapist offers you choices, take them.

 

Don't assume the professional always knows best; don't defer decisions back to the therapist. It's your life. People who don't make choices soon find that they aren't offered any to make.

 

·        Be assertive.

 

State your wants and needs.  The squeaky wheel really does get the oil!

 

 

 

·        Be realistic.

 

Work on what's possible; save the impossible for tomorrow. Therapists can only work with the muscles, functions, and abilities you have. The most tremendous PT in the whole world cannot cure a spinal cord injury.

 

·        Be yourself; be open with your therapist; and let him or her really get to know you.

 

You probably have a lot to offer. Those "old timers" who teach so much to their PTs all started where you are now. Don't sell yourself short!

 

Parting Thoughts

 

If you're in the market for a physical therapist, try using some of these ideas to find the right PT for you. Once you've found the PT of your dreams, re-evaluate your relationship with him or her regularly to make sure you're getting what you really need. Most important, don't underestimate your own role and responsibilities in that relationship. It takes two to make a relationship work!

 

 

See Resources:

 

·        Rehabilitation

·        Spinal Cord Injury & Disability Information

·        Spinal Cord Injury Foundations/Organizations

 

* All italicized words appearing in this chapter can be found in the Glossary Section.

 

Chapter Six

What is Occupational Therapy?

How Will it Help Me?

 

Lorie Richards

Allied Health, Occupational Therapy Education

University of Kansas Medical Center

 

 

Human beings are doers. Everyday people do many activities:  those that are necessary, such as eating, to those that are fun, such as sports and hobbies. When you have a spinal cord injury* (SCI), you suddenly find yourself unable to do what you used to. Your occupational therapist (OT) will help you identify those activities that will help you learn new ways of doing those things you now find hard to do.

 

The OT is the member of the rehab team who determines how your spinal cord injury is affecting your ability to accomplish what you need and want to do in your life. The OT will look at everything that makes you unique, and will try to help you continue to have a meaningful life, one in which you see yourself as successful in your activities. The OT will do this by understanding what is important to you and helping you figure out a way to keep those things in your life by working around the barriers resulting from your spinal cord injury.

 

Where and When Would I Expect to Receive Occupational Therapy?

 

You will probably meet an OT early in your recovery from spinal cord injury, probably while you are still in the Intensive Care Unit. You will also work with OTs during inpatient and outpatient rehabilitation or as part of home healthcare. You may even work with an OT many years after your spinal cord injury. Whenever you are faced with an activity that you need or want to do, but are unable to accomplish because of SCI, an OT can help you find a way.

 

What Kinds of Things Will the Occupational Therapist Want to Know about Me?

 

The OT wants to help you get back to your life, so he or she wants to understand what you do and what is important to you. The therapist wants to know how you and your family did things before your injury and how all of you are managing now. The table below gives you some examples of the questions that the OT may ask you and your family members:

 

·        How did you take care of your personal needs such as bathing, feeding yourself and

getting dressed?

·        Do you prefer to take a shower, a tub bath, or a sponge bath?

·        Do you prefer pull-over or button-down shirts?

·        How do you prefer to spend your days?

 

·        Did you work before your injury? Do you plan to return to work?

·        Did you go to school? Do you plan to return to school?

·        Did you do housework? Do you plan to resume housework?

·        What did you do for fun or leisure? Do you plan to resume these activities?

·        How did you get from place to place?

·        Do you plan to resume these modes of transportation?

·        What were your family relationships and friendships like?  Have there been changes since your injury?

·        Are you satisfied with how these relations are going now?

·        How have you met your needs for romance, intimacy, and sexual needs since your injury?

·        Do you find that your social support system is helping you get things done?

 

Depending upon where you are in your recovery from your spinal cord injury, you may not have thought about the answers to all of these questions. Just remember that your OT will be ready to discuss these activities and relationships with you and to help you discover ways to accomplish and work on these when you are ready.

 

Your emotions affect your ability to do the things you want and need to do. The OT will want to know how you feel about your spinal cord injury and your abilities to accomplish tasks you want and need to do. The OT understands that you have family and friends who may also be affected by your injury. The injury may have changed your relationships with them, at least temporarily. So, the occupational therapist will also want to know how you, your family, and your friends are coping with your injury. The OT wants to help you, your family, and friends adapt to your spinal cord jury so that all of you can get on with the task of living a satisfying life.

 

Lastly, the OT will want to know how the injury has affected your ability to accomplish the activities you want and need to do. She may ask you to do a task, so she can assess if your strength or your ability to feel sensation, such as touch and temperature, interfere with your doing the task. He may measure how much your joints move or how strong your muscles are. She will want to know this information so that you, your family and she can design interventions that will help you return to your activities.

 

What Will Occupational Therapy Look Like?

 

The things you do with the OT will be different depending on when in your recovery you see your therapist. At first, you'll not be allowed to move much. So, the OT will spend most of the time determining what activities you want to work on. The OT will move your arms and legs to keep your joints mobile. You may be given splints, which are devices like removable casts, to keep your joints in a good position. The OT also will teach your family how to keep your joints mobile. You may begin to work on those activities you can do while in bed without further damage to your spinal cord. The OT will also provide you with information about spinal cord injury and explore what your injury may mean in your future.

 

As soon as your physician says it is safe for you to move about in bed and to sit up, the OT will begin working with you on your desired activities. Some activities often worked on first are basic self-care activities such as feeding yourself and washing or dressing. However, you may have other activities that are more important to you and your family. Be sure to discuss your priorities with your OT.

 

Occupational therapists will help you accomplish your desired activities in several ways. She or he will have you engage in your activities again, because performing your everyday activities will strengthen your muscles.  The stronger the muscles you can control, the easier it will be for you to perform the activities you want and need to do.

 

You will need to learn new ways of doing some things. For example, you may dress in bed rather than stand or sit as you did before. The OT will explore possible techniques and strategies for accomplishing your desired activities. She will teach you techniques and will coach you as you practice them. Learning new ways of doing activities takes lots of practice. Because the occupational therapist will not always be able to be there each time you practice, he will teach the nursing staff and your family how to assist you during practice.

 

Many of the activities you will be learning to complete in new ways you once did quickly, easily, and with little thought. Learning new ways to perform these activities may be frustrating. You may be frustrated with how difficult things are and how long it takes to complete even one step in these activities. You may be angry that you have to learn new ways to do things at all. We all feel frustrated when we are faced with changes and challenges we did not expect. These feelings are normal and need to be expressed and acknowledged. Talk to your OT about them. She will help you work through those feelings so you can create a meaningful life.

 

While you are learning new techniques for your activities, the OT will have you try assistive devices. Assistive technology is just a fancy name for tools that help you accomplish a task. People use such tools everyday. Before your spinal cord injury, you probably used an electric can opener. Your OT will show you special tools that may help you. These range from simple, inexpensive tools, such as loops at the tops of your pants that let you pull them up, to sophisticated, expensive tools, such as computers with special switches that will enable you to turn on lights and answer the phone. The OT will let you explore many of these assistive devices and practice with those that interest you. Again, learning how to use an assistive device is learning a new skill, and learning takes lots of practice.

 

The OT will teach you how to use the tool and will coach you while you practice with it.  But he cannot be with you every time you practice, so he will teach your nurses and family how to coach you during practice. Some of the more sophisticated assistive devices need the expertise of specialists with advanced knowledge about their particular tools. If you want to explore more sophisticated tools, the occupational therapist will arrange meetings with these venders and will help you select tools that match your needs and abilities. If you have a problem with a device, talk to your OT. She will be able to help you solve the problem.

 

You and your OT will not have time to work on every activity you want to resume after your injury.  Also, new situations will arise that may pose barriers to your performing activities that are important to you. So, in addition to helping you discover how to perform some of activities

 

you want to do, your OT will teach you strategies for performing activities that you can apply to new situations.

 

The OT will help you plan how you will live in the community. She will help you plan modifications to your home to make it more accessible. If modifications are impossible, she will help you identify the characteristics you need in a new home. Together, you and your therapist will plan how you will grocery shop, do laundry, houseclean, or take out the garbage. Sometimes, you will perform these activities using the techniques you learned and the assistive devices you selected during your inpatient rehabilitation. Often the chance to try some of these activities will not arise until you leave the medical center. So, you may continue to work with a therapist in your home and community to learn new ways to perform more of these community activities and to explore other assistive technology devices to help you.  (See Resources section)

 

At times, you may be unable to perform certain activities or you may decide you want to use your energy and time on other things. You also may decide to hire a personnel assistant. Hiring a personnel assistant means you are now an employer, and you will supervise this person in the accomplishment of some very personal tasks. The OT can help you plan how to hire and supervise someone. The OT can help you identify the characteristics of the person you would want working for you, how to give good instructions, and how to fire someone who does not meet your needs.

 

When you are ready to return to work, you may again work with an occupational therapist. Your OT can help you complete a detailed analysis of the tasks required in your job and help you match the job requirements and your abilities. He can work with your employer to help her make the accommodations that will enable you to return to work. This may involve some simple modifications of your workspace so that it is accessible. It may involve the purchase of equipment to assist you in performing your tasks. It may involve the occupational therapist working with you on the job, as a job coach, for a short period of time. The OT may also help you negotiate some different job tasks that better match your current skills.

 

Your OT should also help you learn how to be your own advocate. He will help you learn how to effectively tell others your needs. She can often recommend community resources that you can use to help you meet your needs. Your OT should also help you learn about your rights and responsibilities according to the Americans with Disabilities Act.

 

How Do I Find Occupational Therapy Services if I Have Been Out of the Rehabilitation Loop?

 

If you are currently under the care of a physician, you may contact him or her, explain your need, and request a referral to an OT.

 

Occupational therapists work in a variety of settings: hospitals, rehabilitation centers, outpatient clinics, and home health agencies.  Depending on your specific need, a therapist from any one or several of these settings may be able to assist you.  Home health therapists typically see people in their homes and would be able to help you adapt your home for easier living and to perform those home activities that are important to you. If you require an adjustment or a splint or other assistive device, a visit to an OT in a rehabilitation unit or outpatient clinic might be most helpful.

 

It is important for you to understand how your insurance plan covers occupational therapy services and what services it pays for. Each plan is different, and some restrictions may apply. Insurance plans may restrict access to occupational therapy in some cases or limit the amount of therapy. Some plans also restrict the kinds of assistive devices they will pay for. Therapists will work within the plan's restrictions. They also may talk to the insurance company about your needs and negotiate for additional services. If payment is denied, the therapist may be able to help you find alternative payment sources or suggest other solutions. You can also choose to pay for the therapy services and assistive devices on your own.

 

Another avenue for finding an OT is through a center for independent living (see Chapter 11). These agencies have been established to assist persons with disabilities live quality lives in the community. They will either employ OTs directly or can refer you to one. Centers for independent living are typically found in urban rather than rural areas. Because there usually are few centers for independent living in a geographic area, they typically do not have their own listing in the yellow pages of your phone book. You may find them listed under Social Services and Welfare Organizations, Disability Services, Consumer Support Groups, or Self-Help Groups, or on the Internet under "Independent Living Centers."

 

If you have activities you need and want to do, but are unable to do because of your spinal cord injury, you may also be eligible to receive assistance from a vocational rehabilitation counselor at the Office of Vocational Rehabilitation. Counselors help people establish a quality life and  return to work. The vocational rehabilitation counselor can also refer you to an occupational therapist.  Each state has an Office of Vocational Rehabilitation and often regional offices. Their telephone numbers can be found in the white or blue pages under state government offices.

 

A final way to find some help is through a college or university in your area that offers a degree in occupational therapy. These programs are often looking for people with disabilities who are willing to volunteer to have students work with them.

 

How Can I Tell if I Am Receiving Good Occupational Therapy Services?

 

You are the only one who understands the importance of the activities for your life. Thus, you will be the one who makes the ultimate decision about the activities you will work on. A good OT values your priorities and can explain the steps necessary for you to meet your goals.

 

For this reason, a good OT will listen to you. She will make suggestions and bring up the issues you should think about regarding your plans. However, she will accept your decisions about the kinds of activities and the kinds of health care practices you will perform. She will also accept your decisions about how you will accomplish the activities you need and want to accomplish. A good therapist is one who works with you on your priorities. She is not just giving you exercises for your muscles or splints for your arms or legs. You should be spending time with your OT discussing how to perform activities and perhaps practicing those activities with the therapist coaching you.

It is important to realize, however, that the OT does not know everything. A good OT knows that. If a situation arises that the OT does not feel qualified to address, she or he will refer you to other professionals who can better meet your needs in a particular area.

 

If you are dissatisfied with the OT services you are receiving, the best thing you can do is to share your concerns with your therapist. If you still are dissatisfied, talk to a supervisor or agency. You may also end your services with that provider and ask your physician for a referral to another therapy provider. But, before switching to another occupational therapy provider, check with your case manager or insurance company. Many insurance companies limit your choices of service providers. If you live in an urban area, chances are you will have many OTs to choose from. If you live in a rural area, your choices will be more limited as there are typically fewer therapists in rural areas.

 

Several regulatory boards make sure that occupational therapists provide ethical practice within the practice laws of the states and the country. If you think that your occupational therapist has acted unethically or illegally, you should contact the regulatory board in your state. You can find your state's regulatory board by calling the state's occupational therapy association.

 

 

See Resources:

 

·        Rehabilitation

·        Spinal Cord Injury & Disability Information

·        Spinal Cord Injury Foundations/Organizations

 

* All italicized words appearing in this chapter can be found in the Glossary Section.

 

Chapter Seven

Recreational Therapy

 

James P.  Verbout, C.T.R.S., Lead Therapist

Mayo Medical Center, Rochester, MN

 

 

Recreational therapy is a key part of the rehabilitation* of those with a spinal cord injury (SCI).  This therapy helps restore or improve function and independence and can help reduce or eliminate the effects of illness or disability. The primary purpose of recreation services is to use recreation as a way to  improve overall health and well being. Professionals trained in recreational therapy are part of the multi-disciplinary team that works with people with SCI.

 

In the rehabilitation unit, the recreational therapist may:

 

·        Provide daily treatment.

·        Conduct an assessment to determine the person's recreational interests, lifestyle, family support system, as well as his or her social and emotional needs, and mental and physical abilities.

·        Devise a treatment plan in cooperation with the person with SCI.

·        Identify goals specific to the person's recreational interests and to his or her current abilities.

·        Document weekly progress as well as monitor the daily changes that may occur and shape that information with the patient, family, and members of the rehab team.

·        Communicate the person's progress in required care conferences.

·        Provide additional resources and equipment when the person returns home.

 

Within the private or group therapy sessions, the therapist will expose the injured person to a variety of experiences. These may include the following activities or equipment:

 

·        Adaptive recreation techniques that develop new interests or renew past interests.

·        Practice of these new techniques to improve or become familiar with new skills.

·        Small and large group activities that use newly learned wheelchair skills and functional ability, and that include social interaction with peers.

·        Adaptive sports equipment.

·        Assistive technology that may include computers.

·        Ways to constructively use time after discharge from rehabilitation.

·        Resources for help in using newly learned rehabilitation skills.

·        Activity list for things to do at home and in the community.

·        Follow-up visits with current recreational therapist or a referral to a therapist closer to home.

·        Help to practice learned skills in the community and discussions about safety issues, architectural barriers, public attitudes, use of adaptive equipment, assertiveness training, and adjustment to disability issues.

·        Information about travel resources: local, state, national and international.

Beneficial Outcomes

 

Most people with a recent SCI know little about recreational therapy or its benefits. Most often they don't realize how much it can impact their lives and improve their physical and mental health. They don't see recreational therapy as a way to improve and maintain their overall health and to learn functional skills that will be useful both at home and in the community. Recreational therapists can also help to educate family members, work to improve a person's fitness and reduce their stress, and help them find sports and activities that will improve their quality of life.

 

Research has shown that recreational therapy can help in a number of ways. It can:

 

·        Improve short- and long-term physical health.

·        Reduce secondary health issues, such as skin breakdown and urinary tract infections.

·        Improve a person's mental and social health, including decreased depression, improved body image, and adjustment to disability.

·        Reduce a reliance on health care.

·        Decrease social isolation.

·        Improve management of barriers to buildings and improve ability to get around the community.

·        Improve stress management and identify coping strategies and activities.

·        Increase self-assertiveness and improve ability to develop social relationships.

·        Return to past recreational interests with new adaptive recreation skills and resources.

 

Recreational Therapy and Meeting Basic Needs

 

Most often, people who are newly injured or who have been asked to see a recreational therapist for the first time are unsure about what to ask or look for from this new person in their lives. The newly injured person and the family are unsure and anxious about the person's physical abilities and new hospital surroundings. Also, the change from the acute medical floor to the rehabilitation unit or the first visit for recreational therapy adds to the list of adjustments. So what can someone with SCI expect from a recreational therapist? How can this person help? The therapist's services or skills include, but are not limited to the following: 

 

·        Flexibility to meet and work with the person and family in the hospital room, rehabilitation rooms, or quiet area.

·        Certification experience, and training in working with SCI.

·        Assessment of recreational interests, skills, and options that are in line with the person's current abilities and a willingness to look at all options and personal interests.

·        Suggestions, printed or video materials, assistive technology to practice adaptive recreation, and cooperation with other rehabilitation professionals to coordinate the return home.

·        Good listening skills and patience to explain a person's options.

·        Recreational therapy spaces and time for use of adaptive equipment, social interaction with peers, introduction to new interests, and resource materials.

·        Age-appropriate activities, from children to mature adults, with a clear idea of the goals behind each activity.

·        Positive manner and realistic options at various phases of rehabilitation.

·        Resourceful link to facility-based activity and community.

 

Communication and the Recreational Therapist

 

Communication is one of the most important aspects of a good rehabilitation experience. Everyone involved needs to be on the same page, so to speak, and to share a close working relationship. The following list may help the injured person, family members, and recreational therapist accomplish their goals.

 

·        Let the recreational therapist know how you feel each day: How are you sleeping? Have your emotions or medications changed?

·        Be assertive, not aggressive, if you disagree with the treatment plan or have concerns about how well you and the recreational therapist get along.

·        Utilize the five interrogative pronouns (who, what, when, where and why) when a treatment intervention is going to start.

·        Ask what is improved or better today than yesterday or earlier in the week of treatment.

·        Don't be afraid to ask questions unrelated to recreational therapy. A recreational therapist will refer you to the right professional, identify a resource within or outside the facility, or tell you when he or she doesn't have an answer.

·        After an initial assessment or consultation, the recreational therapist should offer a treatment plan, goals, and intervention that are explained to the person with SCI, agreed upon, and then begun.

·        If conflict or disagreements arise between the recreational therapist and the person, try to resolve it. If that attempt is not successful, speak with the treatment team leader or the therapist' s immediate supervisor. If you still are unsuccessful, it may be better to switch to another recreational therapist.

·        Ask many questions.  A well-informed person is less anxious and is able to move forward and progress in his or her rehabilitation.

·        Challenge yourself and the recreational therapist. Push for higher skill levels, practice in different social situations, and try community outings. What you practice in a secure, accessible environment may not be helpful once you leave the hospital and must confront the attitudes of friends, access to buildings, or transportation options.

·        Ask for a peer mentor. This person, who has experienced the type of injury you have and is living independently, will give you insight into the future on how effective and efficient you will be after hospitalization.

·        Take time in personal sessions to discuss what is working and what is not. Provide suggestions. Remember, no matter what the outcome, attempts to become more independent are a worthwhile learning experience.

·        Put together your list of questions, concerns, and ideas, so you can be proactive at regularly scheduled conferences with your rehabilitation team, as well as with your recreational therapist.

 

 

 

Recreational Activities and Sports Choices

 

People with SCI paraplegia or quadriplegia are often concerned about return to an active life and past recreational interests. The recreational therapist will help you find resources, identify equipment, and expose you to alternative recreational pursuits. Ever-changing technology such as sports chairs and power wheelchairs; personal and family assistance and support; and the growing awareness of people with disabilities, opens up many possibilities for returning to recreational and leisure pursuits.

 

People with SCI can participate in team sports, such as:

 

·        basketball

·        sled hockey

·        quad rugby

·        softball

·        soccer

 

Or outdoor recreation such as:

 

·        hiking

·        handcycling

·        fishing

·        hunting

·        park exploration

 

You can also choose competitive sports like:

 

·        paralympics

·        road racing

·        weight lifting

·        sports competitions

·        volunteer opportunities

 

Your options should not be limited by the physical components. Instead, look at the social, emotional, and psychological impact a particular sport or recreational event may have. Return to recreational activity and sports is only limited by your lack of willingness to try. Recreational pursuits and sports is not a question of if but when.

 

See Resources:

 

·        Rehabilitation

·        Recreation/Travel/Sports Resources

 

* All italicized words appearing in this chapter can be found in the Glossary Section.