Legal and Medical Resources to Empower Cerebral Palsy Families
1-800-CPFamily (273-2645)
Here are some of the needs a Certified Life Care Planner will consider to develop a specific plan. If you cannot afford a life care planner, below is a checklist that you can fill in for your child’s needs.
· Medical Care/ Routine – Is there a need for an annual exam? Which specialists need to be seen and how often?
· Future Medical Care/Surgical Intervention or Aggressive Treatment – Are there plans for aggressive treatment or additional surgeries such as reconstruction?
· Home Care/Facility Care – Can the child live at home or will a facility be needed? What about specialty programs such as annual camps? What level of care will the child require?
· Evaluations – How often and what type of non-physician evaluations will be required? For example, physical, speech, recreational, occupational and music therapy; dietary assessment, vision, hearing and swallowing studies, etc.
· Therapies – What therapies will be needed? Will these require professional case management? Will behavioral, rehabilitation, or pastoral counseling or family education be needed?
· Diagnostic Testing/Educational Assessment - What testing is necessary and how often?
· Drug/Supply Needs – All prescription and non-prescription drugs, their dosages, quantities and frequency of use; all other supplies such as bladder and bowel program, skin care, etc.
· Home Furnishings and Accessories - Will the child need a specialty bed? Portable ramps? Lifts?
· Transportation – Will the family need a special van for transportation? Will the child be able to drive at some point and if so, are hand controls sufficient or is a specialty vehicle needed? Can local transportation companies be used?
· Wheelchair Needs – What types and configuration of wheelchairs will the child require as he/she ages? Power? shower? manual? specialty? ventilator? reclining? quad pegs? recreational? What about maintenance and accessories?
· Aids for Independent Functioning – What types of equipment can the child use to function as independently as possible?
· Orthotics/Prosthetics – Will the child need braces? What about replacement and maintenance?
· Health and Strength Maintenance – What specialty recreation is needed, such as adapted games or equipment
To find help, answer the questions below. They will be reviewed by the doctors and attorneys who helped us.
FREE state-specific resource list covering everyday activities to emergency situations.
Organize important information and resources for yourself and other caregivers.
In October, I wrote several articles titled “Diary of a Crisis” about a medical emergency we experienced with our daughter, Danielle. Danielle has suffered from severe spastic quadriplegia cerebral palsy since birth. The past 18 months have been a constant struggle with medical professionals to get answers about our daughter's deteriorating health.
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Birthing classes and many books about pregnancy help parents-to-be prepare for the birth experience and some of their choices, especially when it comes to managing pain. However, few deal with potential complications, preferring to leave that scary ”what if” in the hands of doctors. However, my experience as a practicing obstetrician for more than 20 years is that it’s vitally important for parents to know what standards of care are and how to advocate for themselves and their child if these standards are not being met.
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