Exciting stuff - we were told last week about a power mobility study taking place through the University of Oklahoma Health Science Center (OUHSC). They study the 'effects of power mobility on the development and function of young children with severe motor impairments'. Yesterday afternoon, we signed the consent form and authorization for Tessa to participate in this study. It is a year long study with an initial evaluation, a 6 month evaluation and then a final one at the end of the year. The way the study works is that there is a 50/50 chance that Tessa will actually receive a power wheelchair to use over the next year. If she isn't in the group that receives the chairs, she will still have a chance at the end of the study to use a chair for a short time. For years, insurance companies have not approve any kind of power mobility for children under the age of 5. In general, therapists believe that access to power mobility at a younger age, has a tremendous positive effect on children's cognitive development!
Here is some information from the consent form that we signed yesterday for Tessa to participate in the study:
Why Have I Been Asked To Participate In This Study?
Your child has been asked to take part in this trial/study because she has a developmental delay or disability that prevents her from crawling or walking, which makes it difficult or impossible to independently move about and explore environments like most other children can do. Your child's lack of mobility may make it more difficult to learn certain things, such as understanding distances between objects, how to start communication by going up to another person, or how to play with people and objects.
Why Is This Study Being Done?
The purpose of this study is to compare the effects (good and bad) of power mobility with the lack of power mobility on your child and other people with a developmental delay or disability that prevents them from crawling or walking. About 40 people will take part in this study.
What Is Involved In The Study?
Your child will be randomized to receive either power mobility or no power mobility. Randomization means that your child is put in a group by chance. Your child has a 50/50 chance of being in either group. Neither your child nor your early intervention service provider will choose which group she will be in.
Your child's communication, cognitive, self-help, mobility, motor, and social development will be tested. You also will be asked questions about your child's age, developmental condition/diagnosis, and her ability to move independently in various environments, such as home and school. Your family will also be asked questions about depression, socio-economic status, home environment, and parenting stress. The testing sessions will occur in your home and will take approximately four hours.
Power Mobility Group:
If your child is in the power mobility group, project personnel will visit your home to provide structured practice opportunities to teach her to use power mobility. To start with, 1 hour visits will be scheduled 3 times per week for the first month of the study. Then, visits will occur according to the following schedule:
1-hour visits 2 times per week for 4 weeks;
1-hour visits 1 time per week for 4 weeks;
1-hour visits 2 times per month for 4 weeks, and
1-hour visits 1 time per month for the remainder of the study.
Your child's abilities to move the power wheelchair and the amount of time it takes her to meet criteria for independence in power mobility will be measured. Your family will record the amount of practice your child has outside of the structured practice.
No Power Mobility Group:
If your child is in the group that does not receive power mobility, project staff will contact your family on a monthly basis. At the end of 12 months, your child will have the opportunity to try power mobility with the assistance of project staff.
Videotapes and pictures may be taken and used to share the results of the study and to make one videotape about how young children can learn to use power mobility. The pictures and tape may be shown to parents, service providers, university students, and other who are interested in the development of young children.
We would be thrilled for Tessa to have access to power mobility over this next year and to see the kind of cognitive development that might be associated with her ability to use a power wheelchair. Tessa has always shown such an incredible level of understanding with cause and effect and with tools like the iPad, and we really feel like she would blossom with the chance to explore her own environment! I just keep picturing her and Parker playing out on the driveway...chasing each other around one day :)
Our next step is to wait for Tessa's initial evaluation to be done. It will be soon after that, that we will know which group she will fall into for the study. Please be praying with us, that if this would be an appropriate opportunity for Tessa, that she will get to participate. Whether or not Tessa receives a chair for the study, it is huge that we will be involved in a study that produces the kind of evidence we would need to make a case for insurance to potentially approve a power wheelchair for Tessa well before she is 5 years old!
I should say too that WALKING is still and always will be our goal! Participating in this study, in no way means, that we will neglect hard work towards crawling, sitting up and walking. We are actually in the process of getting Tessa a KidWalk Dynamic Mobility System for her to begin to learn how to walk. A power wheelchair would be something that we would incorporate as just one of Tessa's mobility devices.
We actually got to see the power wheelchair that Tessa will be in if she gets chosen to have power mobility. I snapped a couple of pictures. This little chair is in the back of a Ford Edge in these pictures...it is so tiny and quite possibly one of the cutest things I've ever seen!
~Whitney
