"Power” to the Peds: Pediatric Power Mobility
Approximately 13 years ago, a 5-month-old girl named Kay (name changed for confidentiality) revolutionized the way I view independence and inspired me to push the envelope when it came to making the world accessible to the clients I serve. Kay was diagnosed with Spinal Muscular Atrophy (SMA) Type-1 (www.curesma.org), required the use of ventilator, and had very little independent movement of her body, secondary to the muscle weakness associated with SMA. It only took one encounter with Kay for me to realize she is an incredible person and soon she would become one of my greatest teachers.
One day, during a developmental playgroup, Kay was in an adaptive seat on the floor and I noticed her watching her peers crawling to retrieve a toy. When she realized I was watching her, Kay quickly began to shift her gaze back and forth from her peer then to me again and again as if to ask, "How come I can't do that?" At that moment it hit me: Kay was ready to learn how to explore her environment independently! I will never forget the looks of disbelief on her doctors' and nurses' faces when my colleague and I first drove a power wheelchair on the unit to trial with then 6-month-old Kay. Those odd looks quickly turned to smiles, when everyone saw Kay activate the light touch switch mounted near her right index finger and make the wheelchair move forward! Please note: Kay did not learn to drive a power wheelchair overnight, but she owned her first power wheelchair before her second birthday.
In recent years, our industry has made great strides in the field of pediatric power mobility. Fantastic research has come out of programs such the University of Delaware's "Go Baby Go" program. The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) also published a position paper called "The Application of Pediatric Power" (contact RESNA to request a copy). Stay connected to the latest developments in research by joining LinkedIn Groups or subscribing to trade publications, or attending conferences.
My experience with Kay played a significant role in the development of a power mobility evaluation and training protocol. This helped my team and I (at my former clinic) identify the best power wheelchair system for our clients.
When I am teaching seminars or working in the field with clients at pediatric clinics and schools, I am frequently asked these three questions:
1. At what age should a child be considered a candidate for a power mobility system?
Children learn a great deal by exploring and interacting with the world. This is why it is critical a child with gross motor impairments be given the opportunity for independent mobility at the same age as a child without an impairment. As I mentioned earlier, I started experimenting with power mobility while working with clients as young as 6 months old. However, it is important to note that no matter the age of the client, it is vital that proper supervision and assistance be provided to meet the client's cognitive level of function. At the end of the day, determining whether or not a child is appropriate for power mobility boils down to much more than his/her age, and has more to do with an individual child's abilities.
2. What pediatric power wheelchairs can accommodate my client's complex needs?
For a client such as Kay, having a pediatric power wheelchair with custom seating for proper positioning, seating functions (such as tilt and recline), ventilator mounting capabilities, specialty control compatibility, maneuverability (indoors and outdoors), and the ability to be safely transported on a school bus are all considered essential.
The good news is there are pediatric power wheelchairs, such as the Zippie® ZM-310™, on the market that meet the needs of children with a broad spectrum of capabilities. I encourage you to do your research. Visit manufacturers' websites such as Sunrise Medical's to view pediatric wheelchairs, access brochures, see images, and/or watch a video of the child using the wheelchair. In addition, reach out to your local manufacturer's representative to request more information or see a demonstration. Be sure to ask about seating, base size, maneuverability, electronics, transit options (WC-19 compliance), accessories, power and manual seating functions, and color options. If you have a client who is not able to utilize a standard joystick, check-out our blog post on alternative drive controls from July 2014.
3. What does the evaluation and recommendation process entail?
Recommending the best power mobility system for a client's specific needs typically involves navigating through countless equipment options. A proper evaluation is crucial because obtaining funding for new devices often takes a substantial amount of time. An improper "yes" or "no" recommendation for specific devices during a quick 1-2 hour evaluation can lead to lasting consequences.
When completing an initial power mobility evaluation, it is important to follow the general Assistive Technology (AT) evaluation steps which include: a review of the client's medical history, an interview with client and caregiver (i.e. home, community, transportation of equipment, funding, etc.), assessment of the client's current abilities (i.e. motor skills, vision, hearing, cognitive skills, etc.), a seating and positioning assessment, equipment trial, and completion of documentation. However, the process for evaluating a client for power mobility oftentimes includes additional steps. In my experience, it's beneficial to evaluate for a client's potential to learn how to drive a power wheelchair as opposed to a specific device. This mindset is key for first time power mobility users, such as children.
Don't count a child out if he/she does not immediately demonstrate all of the skills needed to justify ordering a power wheelchair. It is not uncommon for multiple evaluations and/or training sessions prior to receiving a power mobility system recommendation. You may want to consider providing therapeutic goal-driven training sessions to provide the client additional opportunities to trial equipment and foster skills. It may also be helpful to give the child's caregivers and school team specific skills to further develop.
For 10 years I had the opportunity to work with Kay in both a clinical and school-based setting. Unfortunately, I lost touch with her about a year ago, but I will forever be thankful for what she has taught me. I hope by sharing some of the lessons I have learned, Kay's impact on the world will be even greater.
Thank you for reading our blog! We love hearing from you, so please do not hesitate to reach out to us. We encourage you to leave a comment or send us an email.
Always remember at the end of the day, your client is your number one priority!
Disclaimer: The contents of this blog are intended to be utilized as a general resource for clinicians and suppliers to then use clinical reasoning skills to determine optimal seating and mobility solutions for individual clients. Steve and Angie are unable to answer questions from members of the general public including caregivers and end users. Members of the general public should direct specific questions to their own clinicians, medical, suppliers, or other health care professionals.
Posted by: Date: 1/20/2015 12:00:00 AM
Filed under: Angie