Orthopedic Impairment

The following information is from National Dissemination Center for Children with Disabilities' Disability & Differentiation Fact Sheets. 
The website was pulled due to lack of funding from the US Department of Education http://nichcy.org/disability/specific 

An orthopedic impairment, as defined by the IDEA, is a bodily impairment that is severe enough to negatively affect a child’s educational performance. This disability category includes all orthopedic impairments, regardless of cause. Examples of potential causes of orthopedic impairment include genetic abnormality, disease, injury, birth trauma, cerebral palsy, spina bifida, amputation, burns, or other causes. 

Jennifer’s Story

Jen was born 11 weeks early and weighed only 2½ pounds. The doctors were surprised to see what a strong, wiggly girl she was. But when Jen was just a few days old, she stopped breathing and was put on a ventilator. After 24 hours she was able to breathe on her own again. The doctors did a lot of tests to find out what had happened, but they couldn’t find anything wrong. The rest of Jen’s time in the hospital was quiet, and after two months she was able to go home. Everyone thought she would be just fine.

At home, Jen’s mom noticed that Jen was really sloppy when she drank from her bottle. As the months went by, Jen’s mom noticed other things she didn’t remember seeing with Jen’s older brother. At six months, Jen didn’t hold her head up straight. She cried a lot and would go stiff with rage. When Jen went back for her six-month checkup, the doctor was concerned by what he saw and what Jen’s mom told him. He suggested that Jen’s mom take the little girl to a doctor who could look closely at Jen’s development. Jen’s mom took her to adevelopmental specialist who finally put a name to all the little things that hadn’t seemed right with Jen–cerebral palsy.

What is CP?

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, like Jen, 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 intellectual disabilities. 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.

How Common is CP?

Cerebral palsy occurs in approximately 2 per 1000 live births. This frequency rate hasn’t changed in more than four decades, even with the significant advances in the medical care of newborns (eMedicine, 2009).

What Are the Signs of CP?

There are four 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 form of CP occurs in 50-75% of all cases.

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. This form occurs in 10-20% of all cases.

Ataxic CP involves poor coordination, balance, and depth perception and occurs in approximately 5-10% of all cases.

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. (March of Dimes, 2007)

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.

Is There Help Available?

Yes, there’s a lot of help available, beginning with the free evaluation of the child. The nation’s special education law, the Individuals with Disabilities Education Act (IDEA), requires that all children suspected of having a disability be evaluated without cost to their parents to determine if they do have a disability and, because of the disability, need special services under IDEA. Those special services are:

  • Early intervention | A system of services to support infants and toddlers with disabilities (before their 3rd birthday) and their families.
  • Special education and related services | Services available through the public school system for school-aged children, including preschoolers (ages 3-21).

Under IDEA, children with CP are usually found eligible for services under the category of “Orthopedic Impairment.” IDEA’s definition of orthopedic impairment reads as follows:

…a severe orthopedic impairment that adversely affects a child’s educational performance. The term includes impairments caused by a congenital anomaly, impairments caused by disease (e.g., poliomyelitis, bone tuberculosis), and impairments from other causes (e.g.,cerebral palsy, amputations, and fractures or burns that cause contractures). [34 CFR §300.8(c)(9)]

To access early intervention services for a child up to his or her 3rd birthday, consult NICHCY’s State Resource Sheet for your state . You’ll find a listing for early intervention under the first section, State Agencies. The agency listed there will be able to put you in contact with the early intervention program in your community.

To access special education services for a school-aged child, get in touch with your local public school system. Calling the elementary school in your neighborhood is an excellent place to start.

What About 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.

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.

All of these are available as related services in both early intervention programs (for very young children) and special education (for school-aged children).

Children with CP 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.

New medical treatments are being developed all the time. Sometimes surgery, Botox injections, or other medications can help lessen the effects of CP, but there is no cure for the condition. It’s also important to understand that cerebral palsy is not contagious, not inherited, and not progressive.  The symptoms will differ from person to person and change as children and their nervous systems mature. (Healthcommunities.com, 2007)

What About School?

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.

As we’ve said, for children up to the 3rd birthday, services are provided through an early intervention system. Staff work with the child’s family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child’s unique needs as well as the services the child will receive to address those needs. The IFSP will also emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with CP. Early intervention services may be provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income.

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. Communication boards, for example, 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.

Tips for Parents

Learn about CP. The more you know, the more you can help yourself and your child. The resources and organizations listed at the end of this publication have a lot of information on CP to offer.

Love and play with your child. Treat your son or daughter as you would a child without disabilities. Take your child places, read together, have fun.

Learn from professionals and other parents how to meet your child’s special needs, but try not to turn your lives into one round of therapy after another.

Ask for help from family and friends. Caring for a child with CP is hard work. Teach others what to do and give them plenty of opportunities to practice while you take a break.

Keep informed about new treatments and technologies that may help. New approaches are constantly being worked on and can make a huge difference to the quality of your child’s life. However, be careful about unproven new “fads.”

Learn about assistive technology that can help your child. This may include a simple communication board to help your child express needs and desires, or may be as sophisticated as a computer with special software.

Be patient, keep up your hope for improvement. Your child, like every child, has a whole lifetime to learn and grow.

Work with professionals in early intervention or in your school to develop an IFSP or an IEP that reflects your child’s needs and abilities. Be sure to include related services such as speech-language pathology, physical therapy, and occupational therapy if your child needs these. Don’t forget about assistive technology either!

Tips for Teachers

Learn more about CP. The resources and organizations listed organizations listed at the end of this publication  have a lot of information about CP to offer.

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.

Resources of More Information

Find an incredible wealth of information and connections at UCP, including the chapters working in your state and publications and resource pages for parents and professionals in English and in Spanish.

United Cerebral Palsy
1.800.872.5827
http://www.ucp.org/

Medline

This service of the National Institutes of Health is an excellent place to learn about CP and keep on top of the latest medical treatments and therapies. Two web pages in particular to visit are:

Medline’s CP fact sheet
www.nlm.nih.gov/medlineplus/cerebralpalsy.html

Medline’s interactive tutorial on CP
www.nlm.nih.gov/medlineplus/tutorials/cerebralpalsy/htm/index.htm

The CDC | Centers for Disease Control and Prevention
1.800.CDC.INFO
Information in English and Spanish.
http://www.cdc.gov/ncbddd/dd/ddcp.htm

NINDS | National Institute on Neurological Disorders and Stroke
1.800.352.9424
Information in English and Spanish.
http://www.ninds.nih.gov/disorders/cerebral_palsy/detail_cerebral_palsy.htm

Woodbine House
1.800.843.7323
Visit this commercial publisher to connect with a book series on CP, including a guide for parents; a children’s book; and a guide to teaching motor skills to children with CP.  Read more about these resources at:
http://www.woodbinehouse.com/Cerebral-Palsy.12.0.0.2.htm

Cerebral Palsy Guide
This guide offers extensive information on CP from a medical perspective.
http://gait.aidi.udel.edu/gaitlab/cpGuide.html


Juan José’s Story

This story comes to you from the Real Stories collection of the Spina Bifida Association.

I remember when the doctors told me my child had hydrocephalus and myelomeningocele and that he would not be able to do anything that another child would do. I was devastated to say the least!

Through the years, my son has proved them wrong time and time again by overcoming obstacles that having Spina Bifida can give. He spoke his first sentence at nine months old, he crawled on time, he used a wheelchair for the first time at 12 months old. My son is now an honor student in “regular” education classes and very active in wheelchair sports. He has many friends and excels in everything that he does.

Spina Bifida Association, Real Stories 1

About Spina Bifida

Spina bifida is one of the most common birth defects in the United States, affecting some 1,500 babies each year. 2 Spina bifida happens during the first month or so of pregnancy and means that the baby’s spine did not close completely. Damage to the nerves and the spinal cord may result.

In general, there are three types of spina bifida. These are:

Spina bifida occulta: In this mildest form of spina bifida, there’s a small defect or gap in one or more of the vertebrae (bones) of the spinal column. The defect may not be visible at birth and causes no harm. In fact, it’s estimated at 15% of healthy people have spina bifida occulta and don’t even know it. An X-ray of their back at some point later in life may reveal the condition. 3

Meningocele: In this form of spina bifida, the protective covering around the spinal cord (called the meninges) has pushed out through the opening in the vertebrae as a sac called the “meningocele.” But the spinal cord is not in this sack, so there’s little or no damage to the nerve pathways.

Myelomeningocele: This is the most severe form of spina bifida, where a portion of the spinal cord itself protrudes through the back. In some cases, sacs are covered with skin. In others, tissue and nerves are exposed. This needs to be corrected surgically within 24 to 48 hours after birth, but some degree of nerve damage has already occurred and more severe disabilities can result. These may include problems with bladder and bowel control and partial or total paralysis of the parts of the body below where the spinal opening was. It’s not unusual to hear the terms “spina bifida” and “myelomeningocele” used interchangeably.

Incidence

Spina bifida occurs in about 7 out of every 10,000 babies born in the United States. 4 Most of these (95%) have the myelomeningocele form of the birth defect.

Reducing the risk of spina bifida | Research has shown that if all women who could possibly become pregnant were to take a multivitamin with folic acid, the risk of neural tube defects like spina bifida could be reduced by up to 70%!

Folic acid is a B-vitamin that helps build healthy cells. Since spina bifida occurs early in pregnancy, often before a woman knows she is pregnant, it is important that women of child-bearing age take folic acid every day. 4

Characteristics and Health Considerations

The effects of spina bifida vary from person to person, depending on the type involved. Children born with spina bifida occulta typically have few symptoms or adverse effects from the condition. As we mentioned, many may never even know that they have it. Those with meningocele, also a mild form, may be only minimally affected as well.

The effects of myelomeningocele, the most serious form of spina bifida, may include:

  • muscle weakness or paralysis below the area of the spine where the incomplete closure (or cleft) occurs,
  • loss of sensation below the cleft, and
  • loss of bowel and bladder control.

Hydrocephalus | In addition, fluid may build up and cause an accumulation of fluid in the brain (a condition known as hydrocephalus). A large percentage (70%-90%) of children born with myelomeningocele have hydrocephalus.

Hydrocephalus is controlled by a surgical procedure called “shunting,” which relieves the fluid buildup in the brain. If a drain (shunt) is not implanted, the pressure buildup can cause brain damage, seizures, or blindness. Hydrocephalus may occur without spina bifida, but the two conditions often occur together.

Latex allergies |  Research has found that up to 73% of children and adolescents with spina bifida are sensitive to natural rubber latex, the substance often used to make surgical gloves. 5 (Synthetic latex is not a problem, because it is man-made.) Symptoms can include watery eyes, wheezing, hives, rash and even life-threatening breathing problems,6 which is why the Spina Bifida Association strongly recommends that families avoid contact with latex products in all settings from birth. See SBA’s full list of recommendations and suggestions online (including a list of latex products and alternatives to those products), at:http://tinyurl.com/yjjfn6o

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Help for Babies and Toddlers

Although spina bifida is relatively common, until recently most children born with a myelomeningocele died shortly after birth. Now that surgery to drain spinal fluid and protect children against hydrocephalus can be performed in the first 48 hours of life, this is no longer true. Children with spina bifida now go on to live full and active lives. They will, however, need extensive help and support to address the effects that spina bifida can have in key developmental areas. Frequent medical tests, surgeries, and hospitalizations are not uncommon. 7

Parents should know that there is a lot of help available for most babies and toddlers with spina bifida, especially those with myelomeningocele. Of particular note is the the early intervention system that’s available in every state.

Early intervention is a system of services designed to help infants and toddlers with disabilities (until their 3rd birthday) and their families. It’s mandated by the IDEA, the nation’s special education law. If a child with spina bifida is found eligible for early intervention services (and most are), staff work with the child’s family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child’s unique needs as well as the services he or she will receive to address those needs.

The IFSP will also emphasize the unique needs of the family, so that parents and other family members will know how to support their young child’s needs. Early intervention services may be provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income.

To access early intervention services in your area
Consult NICHCY’s State Resource Sheet for your state.

There, you’ll find a listing for early intervention under the first section, State Agencies. The agency listed will be able to put you in contact with the early intervention program in your community.

To learn more about early intervention, including how to write the IFSP, visit the Babies and Toddlers section of our site.

Help for School-Aged Children

Just as IDEA requires that early intervention be made available to babies and toddlers with disabilities, it requires that special education and related services be made available free of charge to every eligible child with a disability, including preschoolers (ages 3-21). These services are specially designed to address the child’s individual needs associated with the disability—in this case, spina bifida.

If the child is found eligible for services, school staff will work with his or her parents to develop an Individualized Education Program, or IEP. The IEP is similar to an IFSP. It describes the child’s unique needs and the services that have been designed to meet those needs. Special education and related services are provided at no cost to parents.

There is a lot to know about the special education process, much of which you can learn at NICHCY, which offers a wide range of publications on the topic. Visit our special education pages in the Children 3-22 section of our website.

Educational Implications

Quite often, children with myelomeningocele will need to have a series of operations throughout their childhood and school years. School programs should be flexible to accommodate these special needs.

Many children with myelomeningocele need training to learn to manage their bowel and bladder functions. Some require catheterization, or the insertion of a tube to permit passage of urine.

The courts have held that clean, intermittent catheterization is necessary to help the child benefit from and have access to special education and related services. A successful bladder management program can be incorporated into the regular school day. Many children learn to catheterize themselves at a very early age.

In some cases, children with spina bifida who also have a history of hydrocephalus experience learning problems. They may have difficulty with paying attention, expressing or understanding language, and grasping reading and math. Early intervention with children who experience learning problems can help considerably to prepare them for school.

Successful integration of a child with spina bifida into school sometimes requires changes in school equipment or the curriculum. In adapting the school setting for the child with spina bifida, architectural factors should be considered. Section 504 of the Rehabilitation Act of 1973 requires that programs receiving federal funds make their facilities accessible. This can occur through structural changes (for example, adding elevators or ramps) or through schedule or location changes (for example, offering a course on the ground floor).

Children with myelomeningocele need to learn mobility skills, and often require the aid of crutches, braces, or wheelchairs. It is important that all members of the school team and the parents understand the child’s physical capabilities and limitations.

As Juan José’s story at the beginning of this fact sheet illustrates, families and teachers can play a key role in promoting the personal growth and independence of children with spina bifida. The foundations of that independence are laid a step at a time. Take advantage of the wealth of knowledge and insight that’s available through the organizations listed in the References and the Resources sections of this fact sheet.

Resources

Spina Bifida Association of America
1.800.621.3141
sbaa@sbaa.org | www.spinabifidaassociation.org
Information in English and Spanish.

March of Dimes Birth Defects Foundation
1.914.997.4488
http://www.marchofdimes.com
Information in English and Spanish.

Easter Seals—National Office
1.800.221.6827
http://www.easterseals.com/site/PageServer
Information in English and Spanish.

National Institute of Neurological Disorders and Stroke | National Institutes of Health
http://www.ninds.nih.gov/disorders/spina_bifida/detail_spina_bifida.htm
Information in English and Spanish.

References

1 | March of Dimes. (2009, August). Spina bifida. Available online at:www.marchofdimes.com/birthdefects_spinabifida.html

 2 |  Centers for Disease Control and Prevention. (2010). Data and statistics. Available online at:http://www.cdc.gov/ncbddd/spinabifida/data.html

 3 |  Spina Bifida Association. (2008). Spina bifida. Available online at: http://tinyurl.com/3qegx2y

 4 |  Spina Bifida Association. (2008). What can be done to reduce the risk? Available online at:http://tinyurl.com/6yxqzf

 5  | Spina Bifida Association. (2008). Latex (natural rubber) allergy in spina bifida. Available online at: http://tinyurl.com/yjjfn6o

 6  | March of Dimes. (2009). Birth defects: Spina bifida. Available online at:http://www.marchofdimes.com/baby/birthdefects_spinabifida.html

 7  | Rowley, L. (2007). Welcoming babies with spina bifida: A message of hope & support for new & expectant parents. Available online at the Children and Adults with Spina Bifida and Hydrocephalus website:http://www.waisman.wisc.edu/~rowley/sb-kids/wbwsb.html