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Cerebral Palsy Awareness: The Financial Reality

Enady Jose 

INTRODUCTION

WHAT IS CEREBRAL PALSY?

Cerebral palsy is a condition caused by damage to the brain and is usually diagnosed between your infancy and pre-school years. Cerebral palsy can affect mobility, speech, and development, and many more side effects depending on the level of it and what the symptoms are indicating. There is always continuous research with the condition but unfortunately there is no cure yet. As I write about CP, I believe cerebral palsy should have more awareness than it does because, not many people can afford its costs, since it is a non stop management process and requires life long PT (physical therapy) and including other types of therapy. 

Physical therapy can be up to thousands of dollars ; yes there is therapy covered by insurance but that is not always the case and the given therapies are not as intense as needed to be in order to see a change in lifestyle. Living with cerebral palsy or living with someone who has cerebral palsy can have an affect on everyone’s lifestyles. This isn’t necessarily a bad thing, but something to adapt yourself to and make the best accommodations possible. As someone who has a young family member with Spastic diplegic CP (Cerebral Palsy), I have grown to learn dealing with CP is something everyone has to make sacrifices and certain accommodations for. 

For example: daily living aids as in certain types of shoes, AFOs (Ankle-foot orthosis), wheelchairs or walkers, 24/7 assistance due to limited movement, and frequent physical therapy. The main thing that benefits people with CP is intense physical therapy, except those are more on the expensive side that insurance does not cover.  

 PHYSICAL THERAPY & COSTS

Insurance can cover certain types of frequent physical therapy, but when you start to see little to no improvement you want to change something about how you’re approaching therapy intensity wise. In this case, it can lead you to looking for higher intensity programs that unfortunately are often not covered by insurance.

Speaking from a personal perspective, my younger brother has attended Kinactive Kids Kamp, three times now. As we were unfortunately not able to cover the costs for the intensive Kamp, the first time costs were covered with local fundraisers and help from our community, the two other times we were blessed to have won their Christmas giveaway hosted by “Walking with Cora Foundation,” who are partners with Kinactive Kids.

Kinactive Kids is a great intense physical therapy that is located in Southlake, TX.  They specialize in advanced pediatric physical therapy and chiropractic care and have many options on care depending what you are looking for. Although they are a great program, the costs are high, they do not take insurance , and all their programs are HSA/FSA eligible. Starting intensive programs (Kinactive Kamp) can range from $3,500 to $6,400. If we were to be able to raise more awareness worldwide, there could be more affordable intensive programs that still come with great results, for those who do not have the luxury of affording these certain programs.

DIFFERENT FORMS OF CEREBRAL PALSY

There are 4 main types of CP.

Spastic cerebral palsy

• “Spastic diplegia/diparesis: Muscle stiffness is mainly in the legs, with the arms less affected or not affected at all. Tight hip and leg muscles cause legs to pull together, turn inward, and cross at the knees (also known as scissoring), making walking difficult.”

• “Spastic hemiplegia/hemiparesis: Affects only one side of a person's body; usually the arm is more affected than the leg.”

• “Spastic quadriplegia/quadriparesis: Most severe form of spastic CP and affects all four limbs, the trunk, and the face. People with spastic quadriparesis usually cannot walk and often have other developmental disabilities such as intellectual disability; seizures; or problems with vision, hearing, or speech.”

Dyskinesia cerebral palsy

“Dyskinetic CP includes athetoid, choreoathetoid, and dystonic cerebral palsies. The movements are uncontrollable and can be slow and writhing or rapid and jerky. Sometimes the face and tongue are affected, and the person has a hard time sucking, swallowing, and talking. A person with dyskinetic CP has muscle tone that can change (varying from too tight to too loose) not only from day to day, but even during a single day.”

Ataxic cerebral palsy

“People with ataxic CP have problems with balance and coordination. They might be unsteady when they walk. They might have a hard time with quick movements or movements that need a lot of control, like writing. They might have a hard time controlling their hands or arms when they reach for something.”

Mixed cerebral palsy

“Some people have symptoms of more than one type of CP. The most common type of mixed CP is spastic-dyskinetic CP.”

CONCLUSION

As cerebral palsy does not currently have a cure, it is not a condition that worsens over time, however it can lead to variable joint complications as you get older. Which means needing to attend therapies, update medical equipment/devices, etc, will have to keep being paid for, which in the worst case scenario for some people  isn't realistic and they possibly will have to end treatments, stop managing it and hope for the best while not receiving any form of help.

Although there is no cure, there are medications, surgeries, and medical devices that can help the condition, unfortunately it is all temporary and not a permanent fix for the condition, and most of these treatments I just listed cost a lot of money.

Since treatments for cerebral palsy are life long , I believe intensive therapies, and future discoveries for new treatment should be of no cost and should be a given when diagnosed. As the body evolves, it’ll require consistent management during therapies. After reading this article, I hope to have reached a community and hopefully keep spreading cerebral palsy awareness. Know that you can make a difference no matter how little of an impact you think you are making whether that is wearing green on national CP awareness day or sharing this article, any awareness of CP is the next step for its future!

Works Cited

https://kinactivekids.com/physical-therapy-intensive/#applyform

https://www.cdc.gov/cerebral-palsy/about/index.html#cdc_disease_basics_types-types

https://www.mayoclinic.org/diseases-conditions/cerebral-palsy/symptoms-causes/syc-20353999