January 2009 Edition
Therapy

Commentary

A Truly Accessible Bathroom
Have you ever taken your child to the bathroom, only to find the supposedly accessible public bathroom is not even remotely accessible?  Almost every single bathroom we have ever visited has been unsuitable for my daughter's needs as a child who uses a wheelchair and cannot sit up.
This Month's Focus:  Therapy

How to Evaluate and Choose Therapies
Most children with complex medical issues participate in one or more therapies.  These may include standard therapies like physical, occupational, and speech therapies, or other therapies such as hippotherapy, massage, or conductive education.

With so many different types of therapies out there, it can be difficult to know what might be effective for your child.  Many therapies are not covered by insurance, and they tend to be extremely expensive.  In addition, many therapies--alternative or not--have not been evaluated by medical science at this time, leaving little reliable evidence of their effectiveness or lack thereof. 

Commentaries on Specific Therapies

Neurodevelopmental Treatment
by D'Anne White
Neurodevelopmental Treatment, also known as Neurodevelopmental Therapy or NDT, is a philosophy of treatment that was developed to help children and adults with neuromotor disorders like Cerebral Palsy or traumatic brain injuries.  It is a theory that can be integrated into the practice of physical therapy, occupational therapy, or speech therapy to assist in achieving therapeutic goals.  The basic philosophy is to inhibit abnormal movement patterns and to facilitate normal patterns. 

Hyperbaric Oxygen Therapy:  What Is It and Will It Work?
by Varsha Daryanani
Hyperbaric oxygen therapy (HBOT) is the inhalation of varying degrees of pressurized oxygen at greater than one atmosphere absolute in a pressurized chamber.  While FDA approved for wound healing, carbon monoxide poisoning, burns, infections, and decompression sickness, it is also used in the treatment of several other conditions, including stroke, cerebral palsy, autism, brain injury, diabetes and learning disabilities. 

Aquatic Therapy:  Not Just a Day at the Pool
by L. Kelly
We figured out early on that our daughter loved bath time.  She was content to sit in her bath chair and soak until the water got cold.  It was one of the few times she could get all of her tight muscles to relax.  We put her in the tub every night, but as she got bigger it has became increasingly difficult to get her fully submerged in the tub. 

Then one day her physical therapist brought up the idea of aquatic therapy.  We knew as soon as the PT mentioned it that aquatic therapy would be a hit.  From the very first session, it was obvious that our daughter, who is severely disabled and has spastic quadriplegic cerebral palsy, could participate more fully in the water than she could on land.  She just melted in the warm water.  Her head control improved, she started demonstrating improved range of motion in her shoulders, we saw increased strength in her trunk, and, of course, she loved every minute of it!

Vision Therapy:  One Family's Experience
by Megan
My daughter Maeve, who has multiple developmental delays, has been receiving vision therapy for about three years.  Her focus is mainly on orientation and movement.  While her vision is only slightly impaired, her visual fields are limited and her depth perception seems to be an issue.  Her therapists work on scanning for objects and gaining confidence and coordination in movement.


Specialty Article

GI and Nutrition
Extension Sets and Adaptors for Feeding Tubes
Whenever your child gets a different style tube or button you must try to figure out what extensions or adaptors may be available that will best meet your needs.  This pictorial article is designed to help you make these decisions, featuring pictures of many types of extensions and adaptors.  Manufacturers and part numbers are also included to help with ordering.


Feature

Special Needs Beds:  Getting Insurance or Medicaid to Pay
One of the most helpful adaptive items for many families is a special needs bed.  For children with reflux or respiratory problems, it can help enormously with positioning while also keeping them healthy.  Other children with autism and similar conditions can sleep safely without escaping from their beds in the middle of the night.  And caregivers who need to do medical procedures or have larger children often use high-low style beds to easily lift their child up to a good height for procedures and transfers.   

Unfortunately, it can be difficult to convince your insurer that a special needs bed is more than just an "item of convenience."  We struggled with our insurer for almost a year before we were able to convince them that a bed was a necessary item.  The remainder of this article will focus on the strategies we used to win this appeal.