Cerebral Palsy (CP)

DISABILITY CATEGORY:  Orthopedic Impairment—Cerebral Palsy

TYPES: Spastic, Athetoid, Mixed, Diplegia, Hemiplegia, Quadriplegia

DEFINITION:  

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) defines orthopedic impairment as follows:

            “…a severe orthopedic impairment that adversely affects a child's educational performance. The term includes impairments caused by congenital anomaly (e.g., clubfoot, absence of some member, etc.), impairments caused by disease (e.g., poliomyelitis, bone tuberculosis, etc.), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).”

[34 Code of Federal Regulations §300.7(c) (8)]

Other Definitions:  Cerebral palsy—also known as CP—is a condition caused by injury to the parts of the brain that control our ability to use our muscles and bodies. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. Often the injury happens before birth, sometimes during delivery, or soon after being born. CP can be mild, moderate, or severe. Mild CP may mean a child is clumsy. Moderate CP may mean the child walks with a limp. He or she may need a special leg brace or a cane. More severe CP can affect all parts of a child's physical abilities. A child with moderate or severe CP may have to use a wheelchair and other special equipment. Sometimes children with CP can also have learning problems, problems with hearing or seeing (called sensory problems), or mental retardation. Usually, the greater the injury to the brain, the more severe the CP. However, CP doesn't get worse over time, and most children with CP have a normal life span.  (Source: National Dissemination Center for Children with Disabilities)

FACTS AND STATS:   Cerebral palsy usually is not diagnosed until a child is about 2 to 3 years of age. About 2 to 3 children in 1,000 over the age of three have cerebral palsy. About 500,000 children and adults of all ages in this country have cerebral palsy.  In approximately 70 percent of all cases, cerebral palsy is found with some other disorder, the most common being mental retardation. Other disorders paired with CP include disorders of hearing, eyesight, epilepsy, perception of obstacles (such as judging how far away things are when driving a car), speech difficulties, and eating and drinking difficulties.

Overall, advances in the care of pregnant mothers and their babies have not resulted in a noticeable decrease in cerebral palsy. Only the introduction of quality medical care to locations with less than adequate medical care has shown any decreases. The incidence increases with premature or very low-weight babies regardless of the quality of care. Twins are also four times more likely to develop cerebral palsy than single births, and triplets are more likely still to develop it.

Despite medical advances, the incidence and severity of cerebral palsy has actually increased over time. This may be attributed to medical advances in areas related to premature babies (which results in a greater survival rate) or the increased usage of artificial fertilization techniques. (Source: March of Dimes; Thames Valley Children Centre)

CAUSES:   Cerebral palsy is caused by brain damage that affects a child's ability to control his or her muscles. The part of the brain that is damaged determines what parts of the body are affected. There are many possible causes of the brain damage. Some causes affect how the child's brain develops during the first 6 months of pregnancy. These causes include genetic conditions and problems with the blood supply to the brain. Other causes of cerebral palsy happen after the brain has developed. These causes can occur during later pregnancy, delivery, or the first years of the child's life. They include bacterial meningitis and other infections, bleeding in the brain, lack of oxygen, severe jaundice, and head injury.

Children who are born prematurely or who are very low birth weight (less than 1,500 grams or about 3 1/3 pounds) are more likely to have problems that might lead to cerebral palsy. However, children who are full term and normal birth weight can also have cerebral palsy. (Source:Department of Health and Human Services: Centers for Disease Control and Prevention)

PREVENTION: In many cases, the cause of cerebral palsy is not known, so there is nothing that can be done to prevent it. In spite of improvements in the care of pregnant women and sick babies, the number of babies with cerebral palsy seems to be increasing. This is due, in part, to the survival of an increasing number of very premature babies, who are at high risk of cerebral palsy.

However, some causes of cerebral palsy have been identified, and cases of cerebral palsy that result from them often can be prevented. Rh disease and congenital rubella syndrome used to be important causes of cerebral palsy. Now Rh disease usually can be prevented when an Rh-negative pregnant woman receives appropriate care. Women can be tested for immunity to rubella before pregnancy and be vaccinated if they are not immune. Babies with severe jaundice can be treated with special lights (phototherapy). Head injuries in babies, a significant cause of cerebral palsy in the early months of life, often can be prevented when babies ride in car seats properly positioned in the back seat of the car. Routine vaccination of babies (with the Hib vaccine) prevents many cases of meningitis, another cause of brain damage in the early months. A woman can help reduce her risk of preterm delivery when she seeks early (ideally starting with a pre-pregnancy visit) and regular prenatal care and avoids cigarettes, alcohol and illicit drugs.  (Source: March of Dimes)

CHARACTERISTICS:  

There are three main types of CP:

Spastic CP is where there is too much muscle tone or tightness. Movements are stiff, especially in the legs, arms, and/or back. Children with this form of CP move their legs awkwardly, turning in or scissoring their legs as they try to walk. This is the most common form of CP.

Athetoid CP (also called dyskinetic CP) can affect movements of the entire body. Typically, this form of CP involves slow, uncontrolled body movements and low muscle tone that makes it hard for the person to sit straight and walk.

Mixed CP is a combination of the symptoms listed above. A child with mixed CP has both high and low tone muscle. Some muscles are too tight, and others are too loose, creating a mix of stiffness and involuntary movements.

More words used to describe the different types of CP include:

Diplegia—This means only the legs are affected.

Hemiplegia—This means one half of the body (such as the right arm and leg) is affected.

Quadriplegia—This means both arms and legs are affected, sometimes including the facial muscles and torso. (Source: National Dissemination Center for Children with Disabilities)

MEDICAL TREATMENT: With early and ongoing treatment the effects of CP can be reduced. Many children learn how to get their bodies to work for them in other ways. For example, one infant whose CP keeps him from crawling may be able to get around by rolling from place to place.

Children younger than three years old can benefit greatly from early intervention services. Early intervention is a system of services to support infants and toddlers with disabilities and their families. For older children, special education and related services are available through public schools to help each child achieve and learn.

Typically, children with CP may need different kinds of therapy, including:

Physical therapy (PT), which helps the child develop stronger muscles such as those in the legs and trunk. Through PT, the child works on skills such as walking, sitting, and keeping his or her balance.

Occupational therapy (OT), which helps the child develop fine motor skills such as dressing, feeding, writing, and other daily living tasks.

Speech-language pathology (S/L), which helps the child develop his or her communication skills. The child may work in particular on speaking, which may be difficult due to problems with muscle tone of the tongue and throat.

The child may also find a variety of special equipment helpful. For example, braces (also called AFOs) may be used to hold the foot in place when the child stands or walks. Custom splints can provide support to help a child use his or her hands. A variety of therapy equipment and adapted toys are available to help children play and have fun while they are working their bodies. Activities such as swimming or horseback riding can help strengthen weaker muscles and relax the tighter ones. (Source:National Dissemination Center for Children with Disabilities; March of Dimes)

PROGNOSIS: Cerebral palsy is not a progressive disorder. A person with the disorder may improve somewhat during childhood, if he or she receives extensive care from specialists. While the brain injury is non-progressive, evidence suggests that functional decline occurs in persons with CP in adulthood. Functional decline can encompass decrease in range of motion, decrease or loss of ambulation, and increased pain. In essence, it appears that adults with CP undergo an accelerated aging process compared to their non-disabled peers. Onset of arthritis and osteoporosis can occur much sooner in adults with CP. Further research is needed on adults with CP, as the current literature body is highly focused on the pediatric patient.

The ability to live independently with cerebral palsy varies widely depending on severity of the disability. Some individuals with CP will require personal assistant services for all activities of daily living. Others can live semi-independently in the community with support for certain activities. Still others can live with complete independence. The need for personal assistance often changes with increasing age and the associated functional decline. However, in all except the most severe of cases, persons with CP can expect to have a normal life expectancy. As the condition does not directly affect reproductive function, many persons with CP can have children and parent successfully. (Source: Medicine Net; Department of Health and Human Services: Centers for Disease Control and Prevention)

EDUCATIONAL IMPLICATIONS:  A child with CP can face many challenges in school and is likely to need individualized help. Fortunately, states are responsible for meeting the educational needs of children with disabilities.

For school-aged children, including preschoolers, special education and related services will be provided through the school system. School staff will work with the child's parents to develop an Individualized Education Program, or IEP. The IEP is similar to an IFSP in that it describes the child's unique needs and the services that have been designed to meet those needs. Special education and related services, which can include PT, OT, and speech-language pathology, are provided at no cost to parents.

In addition to therapy services and special equipment, children with CP may need what is known as assistive technology. Examples of assistive technology include:

• Communication devices, which can range from the simple to the sophisticated. (e.g. Communication boards, which have pictures, symbols, letters, or words attached. The child communicates by pointing to or gazing at the pictures or symbols. Augmentative communication devices are more sophisticated and include voice synthesizers that enable the child to "talk" with others.)

• Computer technology, which can range from electronic toys with special switches to sophisticated computer programs operated by simple switch pads or keyboard adaptations.

The ability of the brain to find new ways of working after an injury is remarkable. Even so, it can be difficult for parents to imagine what their child's future will be like. Good therapy and handling can help, but the most important "treatment" the child can receive is love and encouragement, with lots of typical childhood experiences, family, and friends. With the right mix of support, equipment, extra time, and accommodations, all children with CP can be successful learners and full participants in life. (Source: National Dissemination Center for Children with Disabilities)

Tips for Teachers:

• Learn more about CP. The resources and organizations at the end of this publication will help you.

• This may seem obvious, but sometimes the "look" of CP can give the mistaken impression that a child who has CP cannot learn as much as others. Focus on the individual child and learn firsthand what needs and capabilities he or she has.

• Tap into the strategies that teachers of students with learning disabilities use for their students. Become knowledgeable about different learning styles. Then you can use the approach best suited for a particular child, based upon that child's learning abilities as well as physical abilities.

• Be inventive. Ask yourself (and others), "How can I adapt this lesson for this child to maximize active, hands-on learning?"

• Learn to love assistive technology. Find experts within and outside your school to help you. Assistive technology can mean the difference between independence for your student or not.

• Always remember, parents are experts, too. Talk candidly with your student's parents. They can tell you a great deal about their daughter or son's special needs and abilities.

• Effective teamwork for the child with CP needs to bring together professionals with diverse backgrounds and expertise. The team must combine the knowledge of its members to plan, implement, and coordinate the child's services.

ORGANIZATIONS:

United Cerebral Palsy Associations, Inc.
1660 L Street NW, Suite 700
Washington DC 20036
(800) 872-5827  Voice/TTY
http://www.ucp.org

For more than 55 years, United Cerebral Palsy (UCP) has been committed to change and progress for persons with disabilities. The national organization and its nationwide network of affiliates strive to ensure the inclusion of persons with disabilities in every facet of society—from the Web to the workplace, from the classroom to the community. As one of the largest health charities in America, the mission of United Cerebral Palsy is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network.

Children's Neurobiological Solutions (CNS) Foundation
1726 Franceschi Road
Santa Barbara, CA 93103
(866) CNS-5580 (267-5580) 805-965-8838
http://www.cnsfoundation.org

Our primary goal is to promote development of effective treatments for children with neurological disorders as quickly as possible. Guided by our mission, vision, and core values we do the following: fund high-quality research focused on brain repair and regeneration; sponsor meetings where physicians and scientists can work together; encourage young scientists to pursue children’s neurological research; advocate for increased funding for children’s neurological research; and educate families about options for treating their children.

Children's Hemiplegia and Stroke Association (CHASA)
4101 West Green Oaks Blvd., Ste. 305
PMB 149
Arlington, TX 76016
(817) 492-4325
http://www.hemi-kids.org

Online Support for Children with Hemiplegia or Hemiplegic Cerebral Palsy.  Includes local support groups and an e-mail discussion group to keep parents of children with CP connected.

RESOURCES:

Web sites:

http://www.lburkhart.com

This is a list of assistive technology resources for students and teachers.  It includes directions for making your own assistive technology devices.

http://www.ucp.org

United Cerebral Palsy (UCP) is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability. As one of the largest health charities in America, the UCP mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network.

http://www.cerebralpalsy.org

“4 My Child” provides a wealth of knowledge to help you with the difficulties of caring for children with Cerebral Palsy or other special needs.

http://www.hemikids.org

Hemi-Kids is an online mailing list for parents of children who have hemiplegia, hemiplegic cerebral palsy, or hemiparesis. 

http://gait.aidi.udel.edu/res695/homepage/pd_ortho/clinics/c_palsy/cpweb.htm

Cerebral Palsy: a Guide for Care (Alfred I. Dupont Institute)

An informed Question & Answer presentation of the origin and diagnosis of cerebral palsy in children and babies from the book, "Cerebral Palsy: A Complete Guide for Caregiving".

http://www.healthsystem.virginia.edu/internet/pediatrics/patients/Tutorials/cp.cfm

Tutorial for Cerebral Palsy

Gives a basic introduction to what cerebral palsy is and suggests various activities that people can do to understand what it is like to have CP.

http://www.about-cerebral-palsy.org

Learn all about cerebral palsy and the latest treatments, read articles and news, or ask the doctor why he thinks your child has cerebral palsy.

http://www.aacpdm.org

This is the home page of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). Browsing is welcome. Health Professionals, Parents, and Patients can begin their online research by visiting the Library and Resources sections.  There is a searchable database of useful articles.

Publications:

National Center on Birth Defects and Developmental Disabilities (NCBDDD) Publications

Members of the NCBDDD staff have written many scientific articles on cerebral palsy. These articles examine such topics as how common cerebral palsy is, and factors that increase the risk that a child will have cerebral palsy.

Cerebral Palsy Magazine

Cerebral Palsy Magazine (ISSN 1544-9939) is the first quarterly special-interest international publication focusing on Cerebral Palsy.

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