Cerebral Palsy – Overview and Resources

Cerebral Palsy – Overview and Resources

While Cerebral Palsy (pronounced seh-ree-brel pawl-zee) is a blanket term commonly described by loss or impairment of motor function, Cerebral Palsy is actually caused by brain damage.

The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after. Cerebral Palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning. Symptoms usually appear in the first few years of life and once they appear, they generally do not worsen over time. Disorders can be classified into four categories:

  • Spastic (awkward reflexes, stiffness in one part of the body, contractures, abnormal gait)
  • Ataxic (difficulty speaking, problems with depth perception, shakiness or tremors, spreading feet apart when walking)
  • Athetoid/Dyskinetic (stiff or rigid body, floppiness in limbs, problems with posture, issues feeding)
  • Mixed (a mix of two or more of the above)

Here are some facts to note about Cerebral Palsy:

  • About 10,000 babies per year in the U.S. will develop Cerebral Palsy.
  • An estimated 764,000 people have Cerebral Palsy in US.
  • About 2-3 children per 1,000 have Cerebral Palsy.
  • In 2003 dollars, the average lifetime cost of Cerebral Palsy is an estimated $921,000. This does not include hospital visits, emergency room visits, residential care, and other out of pocket expenses.
  • Two-thirds of children with Cerebral Palsy will be mentally impaired.
  • Two in three people with Cerebral Palsy can walk
  • Three in four people with Cerebral Palsy can communicate verbally

Treatment for CP can include physical therapy, occupational therapy, speech-language pathology, braces, custom splints, and custom therapy equipment.  Sometimes surgery or Botox injections are used to lessen the effects of the CP; however there is currently no cure for the condition.

Case Managers advocate with the family to ensure a child with CP is receiving appropriate medical care and the most suitable education.  Contacting the Children’s Medical Services (CMS) Social Worker assigned is the first step. The phone number for CMS is (941) 361-6250.

Once CMS is involved the next step is to ensure constant communication with CMS and all of the medical providers, as well as any other service providers. This includes the school system.

Assisting the family in advocating for the child’s rights to a quality education, that will enrich her life and open doors for the future is important.  This means ensuring that the school has created a learning environment that is nurturing and respectful of her unique needs. If the child does not qualify for an IEP (Individualized Education Plan), a 504 Plan may be the answer. Required by the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973 is the first civil rights law guaranteeing equal opportunity for more than 35 million Americans with disabilities.

The 504 Plan is not federally funded like the IEP, so it doesn’t have the “legal teeth” that an IEP does. But it does provide some legal rights.  In order for the child to qualify for a 504 Plan, her learning or physical disability cannot interfere with her education. If it does, then she needs an IEP. If she is considered “not IEP qualified,” and you feel she needs daily support, then she may qualify for the 504 Plan.  While the 504 Plan is a civil rights law, it provides less legal protection to the child than an IEP (IEPs fall under federal education law). With the 504 Plan, schools are not required to report progress, adhere to specific goals, or provide specialized instruction to disabled students.  However, a 504 Plan is better than having no plan at all.