Choosing the Right School for Special Needs Children

Here is a fantastic story from NPR about choosing the right school for your special needs child. The reporter interviews 3 mothers and the challenges they faced searching for the right fit for their children's needs. 

http://www.npr.org/2012/08/21/159541067/choosing-the-right-school-for-special-needs

National Cerebral Palsy Awareness Week in Australia

June 31, 2012

From http://www.cerebralpalsyaustralia.com/

This week in Australia they are celebrating National Cerebral Palsy Awareness Week (CP Week) to recognise the achievements of people with cerebral palsy and to create greater awareness, understanding and acceptance.

CP Week 2012 will be held from Monday July 30th to Sunday August 5th. Through CP Week, Member Organisations work to make our community more inclusive, more accessible and more welcoming for people living with Cerebral Palsy. Support is seen throughout the week through activities, programs and initiatives.

The important message for our community is to focus on seeing people with cerebral palsy firstly just as people, and to work together to achieve full social inclusion.

“National Cerebral Palsy Awareness Week highlights that with the right support people with Cerebral Palsy can and do reach their potential, despite the economic, physical and attitudinal barriers often faced,” said Glenn Rappensberg, President, Cerebral Palsy Australia.

Here is an exclusive interview from Col Clifford as he talks with Angela Tillmans, the CEO of the Cerebral Palsy League, and Laura Scurr who has Cerebral Palsy and has graduated with a double degree from the USQ Toowoomba.

http://blogs.abc.net.au/queensland/2012/07/download-cerebral-palsy-week.html

For further information please contact Cerebral Palsy Australia.

Choosing Your Child’s First Wheelchair

By Lee Vander Loop
CP Family Network Editor

About a third of children with cerebral palsy are non-ambulatory and will require the use of a wheelchair for transportation outside, indoors, or both. Getting the right wheelchair at an early age helps a child gain independence and all the confidence that can inspire.

When a child reaches a size where they can’t be carried safely, around 3 years old, it’s time to get a wheelchair. If you’re new to this need, it is easy to get overwhelmed by all of the choices. But as a parent who has dealt with this issue for many years, there are really only fourbasic considerations:

• Is it comfortable?
• Is it reasonably adaptable?
• Does it provide the needed support and alignment?
• Is it easy enough to transport?

That said, there’s an amazing array of wheelchairs and associated technology available today that didn’t exist even 10 years ago. Lightweight, ultra-light, electric, “smart,” sports, all-terrain and customized seating are just some of the wheelchair options for non-ambulatory children and adults in today’s world. There are even wheelchairs that incorporate gyroscopic technology and four-wheel drive.

Selecting a Wheelchair Seating System

Most hospitals and all rehabilitation centers offer “seating clinics.” This is where physical and occupational therapists evaluate a child’s needs and make recommendations for a wheelchair, a.k.a. seating system. Be aware that these clinics may deal with only certain manufacturers and therefore won’t be showing you what other options may be available.

A main consideration of therapists is to choose a seating system that distributes a user’s weight away from areas of the body that are most at risk for pressure sores. For someone who spends hours of their day in the sitting position, the parts of the body that are the most at risk for tissue breakdown include the ischial tuberosities, coccyx, sacrum and greater trochanters. The seating system also must provide stability, comfort, shock absorption and aid in seating posture.

Custom seating systems can be created for individuals with scoliosis or other complex muscular skeletal conditions when it’s obvious that standard seating systems aren’t suitable.Usatechguide.org, developed by the United Spinal Association, offers an impressive list of manufactures of custom and molded wheelchair seating systems.

Questions to Ask

You should ask these questions of whatever seating system your child’s therapists recommend:

• How and why did the therapists select the style, options or seating system they are presenting?
• Can the chair/seating system be adjusted for future growth, changes in posture, or function?
• Can the wheelchair or seating system be folded or converted for easy transport?
• Can the chair be used in a vehicle tiedown system (if you will be using a tiedown system)? If so, what adaptions need to be made?
• What additional accessories are available, such as seating trays, clamps to attach switches or alternative communication devices?
• What adaptations are being added and do they facilitate your child’s needs?
• What type of headrest is being used and what parameters are being used in assessing the best headrest for your child?
• What type of harness system will be used with your child’s new wheelchair or seating system and what is its crash-test rating? Examples of today’s offerings of harness systems can be found at Convaid.  A five-point restraint harness is recommended for children.

What about a Powered Wheelchair?

A Swedish study of wheelchair use among children with cerebral palsy found, not surprisingly, that children using powered wheelchairs experienced much greater independence than those that required adult pushing. Therefore, the researchers suggested that children be introduced to a powered wheelchair as soon as they can safely begin to use one.

Additional Resources

For additional advice from the CP Family Network, read Stroller and Wheelchair Selection.

The RESNA Wheelchair Service Provision Guide, developed by the Rehabilitation Engineering & Assistive Technology Society of North America, offers a wealth of information on wheelchair selection.

The major U.S. wheelchair manufacturers that offer pediatric power wheelchairs are: Invacare,Permobil, Pride Mobility, and Sunrise Medical.

National Registry of Rehabilitation Technology Suppliers is a national association that provides lists and locations of people who specialize in complex rehab wheelchairs and seating positioning systems.