Cerebral Palsy
On this page: Signs and Symptoms, Special Considerations, Case Study, Conversion Solutions, Resources
Cerebral Palsy is a broad term used to describe a group of chronic movement or posture disorders. “Cerebral” refers to the brain, while “Palsy” refers to a physical disorder, such as a lack of muscle control. However, Cerebral Palsy is not caused by problems with the muscles or nerves, but rather with the brain’s ability to adequately control the body. Cerebral Palsy can be caused by injury during birth, although sometimes it is the result of later damage to the brain, such as stroke.
Signs and Symptoms
Symptoms usually appear in the first few years of life and once they appear, they generally do not worsen over time. Disorders are classified into four categories:
- Spastic (difficult or stiff movement)
- Ataxic (loss of depth perception and balance)
- Athetoid/Dyskinetic (uncontrolled or involuntary movements)
- Mixed (a mix of two or more of the above)
Read more about types of Cerebral Palsy.
More than half a million Americans have Cerebral Palsy, and an additional 4,500 infants and children are diagnosed yearly. Some of these cases may be preventable.
In our 30+ years working with families to provide accessible transportation solutions, we have worked with hundreds families affected by, or working with Cerebral Palsy. We get to know our clients very well over the years as we work with them through changes in their lives and the affect they have on their transportation needs.
Through this long-term interaction, we have learned that cerebral palsy presents unique challenges to the accessible transportation puzzle that each family must navigate through the years. We have been able to use the knowledge to help people make good choices in the mobility equipment they buy so that they can meet current accessible transportation needs and plan for future changes.
Parents of children with Cerebral Palsy usually come to us when their child is around 4-5 years of age and the weight of the child and the child’s wheelchair have increased to the point where it is difficult lifting them in and out of vehicles. At this point, going places as a family, to doctor’s appointments, or wherever, becomes more difficult and time consuming and begins to change the way the family thinks about transportation. The “hassle-factor” of getting in and out of the car combined with the risk of injury forces most people to look for alternatives.
At this point we can help the family understand the important decisions they need to make and the changes they need to plan for as their child continues to grow.
Special Considerations for those with Cerebral Palsy
Fortunately Cerebral Palsy does not typically “progress” in the sense that the symptoms get worse. From the perspective of accessible transportation for Cerebral Palsy, the progression we focus on is the growth of the child and the changes in size, weight and mobility equipment they use. As well, families grow in number and size and this affects family transportation options.
Thus “growth” is the major consideration. Which points us to the following:
- Get a vehicle large enough to accommodate the entire family.
- Plan for the future. If you think your family is going to grow in numbers while you have this vehicle, be sure that you plan for it.
- Situate the lift or ramp and wheelchair station in a position that works best for both the individual with CP and the other family members.
- Both walkers and wheelchair-users have to enter and exit the vehicle and ride together comfortably. Organizing the wheelchair vehicle to accommodate your needs and preferences will help make a successful choice.
- Lifts and ramps can be put in the rear or side of the vehicle and several different styles of each are available. Be sure to look at the tradeoffs involved in each choice.
- Equip your handicap van with the features that will make the biggest impact on your long-term satisfaction:
- Wheelchair Securement system: you will use this day in and day out and it is the most critical and difficult task in using a wheelchair van. Several systems are available and the best options are those that make this chore easier-don’t skimp here!
- Power or manual Ramps? Manual ramps are less expensive and easier to maintain but require some effort on your part when you open/close the door and ramp. Power options are easiest to use but come at an additional cost and potential for malfunction. Which is best for you?
- Finance the vehicle according to your plans.
- The length of time you expect to own the vehicle is a major consideration on whether you lease, purchase or finance and how long a finance term makes sense for you.
One silver lining for the CP family is that, because individuals with CP are typically smaller than average, you will be able to fit in almost any readily available wheelchair van without expensive modifications or equipment. Size is a problem for vehicles because particulary large people often have to have additional options such as raised roofs, raised doors or extra wide lifts that can add significantly to the cost of the vehicle. Additionally, larger people and their equipment take up more space in the vehicle leaving less for passengers and luggage. This does not apply typically for the CP individual.
Case Study: Rebecca B.
Rebecca was diagnosed with Cerebral Palsy at the age of two months. Luckily she suffers very little cognitive delay, but does have physical disabilities. Muscle spasms affect her gross and fine motor skills including her speech, balance and reaction time. Due to these limitations, she does use a wheelchair and is unable to drive herself.
Rebecca came to VCI Mobility in 2003 and we introduced her to the idea of a wheelchair accessible minivan. With the passenger seat removed from Rebecca’s new accessible Honda, she could then open the side door, ride into the passenger side, secure her mobilized wheelchair and close the door with little or no assistance.
With her new wheelchair accessible minivan, Rebecca can spend more time enjoying the things she loves; theatre, horseback riding and serving her community, and less time with transportation issues.
Three Most Common Conversion Solutions
- Rear entry low floor minivan
- Side entry low floor minivan
- Full size van with lift
- Rear entry
- Side entry
Resources
UCP: Pennsylvania One-Stop Resource Guide
Cerebral Palsy Association of Chester County
749 Springdale Drive
Exton, PA 19341
Phone: (610) 524-5850; (800) 559-CCDS (Toll Free)
Fax: (610) 524-5855
E-mail: jmckit@ccil.org
United Disabilities Services of Lancaster County, PA
1901 Olde Homestead Lane
P.O. Box 10485
Lancaster, PA 17605-0485
Phone: (717) 397-1841; (800) 995-9581 (Toll Free)
Fax: (717) 293-1595
E-mail: webmaster@udservices.org
Williamsport Office
The Williamsport Building
460 Market Street, Suite 232
Williamsport, PA 17701
Phone: (570) 320-0590
Vocational Services Office
602 West Chestnut Street
Lancaster, PA 17603
Phone: (717) 397-6876
Reading Office
501 Washington Street, Suite 802
Reading, PA 19601
Phone: (610) 685-1653
Windsor Residence
4 North Avenue
Windsor, PA 17366
Phone: (717) 244-5363
Choices
140 East Orange Street
Lancaster, PA 17602
Phone: (717) 397-5600
Special Kids Network
1860 Charter Lane, Suite 203
Lancaster, PA 17605
Phone: (717) 397-4015
Cerebral Palsy Association of Delaware County, Inc.
401 Rutgers Avenue
Swarthmore, PA 19081
Phone: (610) 328-5955
Fax: (610) 328-0495
E-mail: billb@delctycerebralpalsy.org
Developmental and Disability Services of Lebanon Valley
P.O. Box 710
1126 Walnut Street
Lebanon, PA 17042
Phone: (717) 274-3493
Fax: (717) 274-1304
E-mail: ddslv@prolog.net
Cerebral Palsy Services of Luzerne County
159 Simpson Street
Wilkes Barre, PA 18701
Phone: (570) 829-2613
Fax: (570) 829-5166
Cerebral Palsy Services of Northeastern Pennsylvania
425 Wyoming Avenue
Scranton, PA 18509
Phone: (570) 347-3357
Fax: (570) 341-5308
E-mail: UCPNEPA@epix.net
Cerebral Palsy Services of Schuylkill, Carbon and Northumberland Counties
Agricultural Park, 101 Park Street
Pottsville, PA 17901
Phone: (570) 622-7920
Fax: (570) 622-9271
E-mail: petek@pottsville.infi.net