Sunrise Medical SMA User Manual

Comprehensive Guide to Powered Mobility

For Families of SMA

When selecting the first mobility device the choices can be overwhelming. This

document aims to guide you through the selection process as well as offer help to obtain

funding. Strollers, manual wheelchairs and power wheelchairs are all possible

alternatives. Efficiency, durability, comfort, ease of use, and other features will define

your selection.

There are several major areas you need to consider when selecting the appropriate

powered mobility device: bases, seat functions, seating systems, and access/control

methods. Today’s technology allows you to mix and match a variety of features. This

mobility equipment will be used for many years to come so careful selection and

consideration is of utmost importance. We hope that you will find this guide helpful in

your decision making process.

Created by Julianna Arva, MS, ATP

Pediatric Product Specialist

October 2005

Table of Contents:

Chapter I: Where do I start?.............................................................................................3

Chapter II: FAQ on early provision of independent mobility…………………………5

Chapter III: Power wheelchair bases……………………………………………………8

Chapter IV: Seat functions…………………………………………………………...…12

Chapter V: Seating systems……………………………………………………………..17

Chapter VI: Controls / Electronic interfaces /Access methods……………………….20

Chapter VII: Funding…………………………………………………………………...23

List of Resources………………………………………………………………………..26

Chapter I:

Where do I start?

A wheelchair consists of many variables, which all need to be configured to a specific individual. No two wheelchairs are alike when done properly. In addition, it needs to fit like a pair of shoes, since it will not only act as a mobility device, but also the user’s seat and primary interface for many hours every day, for years to come. A wheelchair can be a gateway to independence and a very active lifestyle – or it can be the cause of a lot of headaches and frustrations, when not selected properly.

It is difficult to get reimbursement for good quality and highly capable wheelchairs, therefore proper selection first time around is crucial. While other medical issues might now be overwhelming, it is worth spending time and “doing your homework” regarding the wheelchair selection. Please see List of Resources at the end of this guide for specifics.

So, where do you start?

Before your appointment:

• Read this and other guides to get a better understanding of what variables to look for, and what features to consider. Learn what questions to ask and why. (i.e. seat to floor height, control options, attendant controls, transportation, etc.)

• Talk to other users and their families, hear their experiences

• Browse some user groups for feedback

• Browse manufacturer’s sites to get a better understanding of the available

products

• Visit local trade shows to see and try a variety of products

• Get recommendations for a good supplier and a knowledgeable therapist

from other FSMA members in your area

• Don’t be shy to contact your manufacturer’s representatives. Most large companies have territory managers who will be glad to answer questions and point you to respectable hospitals and clinicians.

Your appointment:

• It is important to work with a knowledgeable therapist and a reputable dealer. If your child’s needs are involved, make sure you see a therapist who is specialized in Assistive Technology and does wheelchair assessments on a regular basis. There are only a handful of therapists who are very savvy in technology – you can usually find them in larger hospitals and clinics in the larger cities.

• A reputable and knowledgeable supplier will also be needed to ensure careful follow-up, continued support and proper integration of technology.

• RESNA (The Rehabilitation Engineering Society of North America) provides the only certification currently available to prove proficiency in Assistive Technology. Their website provides a list of ATPs (Assistive

Technology Practitioners – certified clinicians), and ATSs (Assistive Technology Suppliers – certified dealers). Not all good practitioners are certified, and not all certified people are savvy in wheelchairs. This is a voluntary certification for people working with all assistive devices. However, if no other recommendations exist, this might be a good resource to find qualified practitioners.

• Depending on the needs, the assessment might be a single occasion or a series of occasions to look at different options and/or provide training.

• Ask questions. Try a variety of equipment. Try the wheelchair in your vehicle, home, etc. to ensure everything will fit with your surroundings.

• Be sure to discuss and agree to all details of the equipment.

After the appointment:

Your therapist, doctor and supplier will assemble the paperwork and submit it to your insurance. It usually takes minimum 3 months from assessment (evaluation) to delivery of the equipment. Keep in touch with the professionals and help advocating to your insurance if possible. The more you are involved the higher the chances to get the equipment faster. If the equipment is denied, appeal.

After delivery:

Be sure to have asked all your questions – you will have to deal with training and maintenance. Often you will also have to educate other caregivers, such as school staff etc. on the proper use of the equipment.

Chapter II:

FAQ on early provision of independent mobility

Why is efficient mobility a priority? Children learn through exploring their environments. Without efficient and independent mobility, you child is more likely to develop dependency on others. Think about how a child learns: approaching objects that tweak their curiosity, touching them, playing with them, exploring their environment. Making mistakes, learning from them. Children want to move constantly! Playing with and competing against each other. Now think of a child in a stationary position – she can look around and see others do things, but all she can play with is what was handed to her. She can not approach things on her own; she can not do random exploration. She does not develop the ability to make decisions on her own. In addition, she might develop negative personality traits as a consequence of just having to point at things and wait for someone to bring them to her. With mobility comes opportunity as well as responsibility – both prerequisites of independence, confidence and a positive social attitude.

What is “efficient” mobility? Your child needs to be able to get around effortlessly throughout the day, accessing the same environments as all other children. That means she has to be able to move across rooms, around the playground, in the yard, down the street, at church, in the mall, between classrooms. Having just enough strength to turn a manual wheelchair around and move a few feet does not qualify for efficient mobility. Always opt for a lesser alternative that provides efficiency – however, most children with SMA will not have sufficient strength to be efficient with a manual wheelchair. In addition, most pediatric manual wheelchairs are equal to or heavier in weight than the child occupying it, and due to growth concerns their access to the drive wheel is often not set up properly.

Many children may benefit from utilizing a manual wheelchair to help maintain upper extremity strength and range – therefore some families opt for both solutions, a powered wheelchair for distances and a manual wheelchair for closed, indoors environments. Obviously both devices may be difficult to obtain through your insurance.

Isn’t my child going to lose her strength due to using a power wheelchair? Exercising is important for everyone – however, mobility and exercise are not the same. Think of your own routine – adults drive to the gym to get on the treadmill. They drive to the park to ride their bicycle, etc. We drive around for a long time just to find the nearest parking spot to the mall entrance. Mobility needs to be effortless and should not be tiring – there are other ways to maintain strength and endurance. When your child wakes up in the morning she has a finite supply of energy. That energy can be spent on trying to get somewhere, or she can get there easily then use her energy to actually do something. In addition, research has found that children typically do not lose gross motor function due to power wheelchair utilization, since they still utilize those functions for other tasks.

Some people opt for a hybrid solution, a power assisted device. This is essentially a manual wheelchair equipped with motors in the wheel hubs. When the user pushes the handrim, it activates the motors which help the chair to roll faster and longer. These devices are easier to push than manual wheelchairs, and easier to transport than power wheelchairs. However, the user still needs to have appropriate strength and range of motion in the upper extremities, and the device weighs quite a bit even when taken into pieces. Also, power assisted wheelchairs can not be equipped with seat functions, so your child needs to have enough upper body strength to sit upright all day.

What is a good age to get started with powered mobility? In short, as young as possible. Many children, particularly with SMA get started driving as early as 18 months of age, and some are starting even younger. Consider normally developing children – they crawl at 5 month of age, stand up around 8-9 months and walk around at 12 months. Obviously, children have the perception of mobility and the concept of directionality before they turn one year old. Mobility consists of developing motor function and perceptual skills. Most children with SMA are very intelligent and are cognitively ready for mobility at a very young age. Learning an upper extremity motor function is all it takes to be mobile – moving a hand switch, a joystick, etc. The younger you start, the more the power chair aids personality and cognitive development, and it also becomes a natural part of your child’s self image. By the time children get to school, they should be able to focus on academic development as opposed to working on mobility.

Is it safe for a small child to drive a power wheelchair? Is it ever safe for a small child to be left alone? The answer is obviously no; any small child requires constant supervision and that is no different with a child driving a motorized wheelchair. Supervision however is not to be confused with the lack of independence – we will always watch over small children but allow and encourage them to do as much as possible on their own, so eventually they can do all those things unaided and unsupervised. There are many ways to enhance safety for a beginner driver – you can place bumpers around the chair, make programming changes (i.e. turn speed and torque/power down, etc), have an emergency stop switch handy. Keep in mind though that we all learn through making mistakes; most of us never learned that fire hurts until we put our fingers across a candle. Children fall many times before they eventually learn to stand and walk. Mistakes and failure are a natural part of the learning curve – bumping into the walls with a power chair is also an essential step to becoming a proficient driver.

Is there anything I need to know about teaching my child to drive? In brief, learning to drive a power chair is no different from learning to walk, and you should treat it accordingly. Encourage your child but do not provide too much direction. Let her develop the will to move, the understanding that the controls make the chair move, and the perception of directionality. Understand that some days just sitting in the chair and getting used to the thought may be enough. Do not use language she may not yet understand (such as left, right, stop, slow down, etc.) Rather, substitute with simpler words and expressions that she is used to (Come here, follow me, take your hand off the stick, push your hand towards me, etc.) Do not reach for the controls and try doing it

instead of your child. Most of all, be patient – hard as it might be, your child will develop an understanding quickly if the right support is provided. Provide a safe environment while your child learns to drive – level surfaces, few obstacles, and possibly a harder surface (it requires more torque to move on carpet.) It is advisable to use low speed and torque settings for a beginner driver. Keep your child motivated through use of their favorite toys, etc, so they develop an understanding that movement will be purposeful.

Chapter III:

Power wheelchair bases

When selecting your first power chair, chances are that you will be overwhelmed with the selection and the features. You may feel like making a quick selection since you have so many other medical issues to worry about. The decision, however, is very important since this chair will be your child’s vehicle and mobility for many hours every day for several years. There is NO perfect power wheelchair. Every type will have its tradeoffs – you need to match the technology to your lifestyle and preferences as well as your child’s medical needs. Here are certain features to consider and compare:

Drive configuration – location of the larger drive wheels on the base of the wheelchair

• Front wheel drive

Large front drive wheels pull the weight instead of pushing it. This allows for improved curb and obstacle climbing capabilities, better handling in soft terrain such as grass and gravel. It also provides very intuitive and tight maneuvering (i.e. turning into a doorway from the hall). Since there are no front casters spinning, you can pull in the footplates closer to the body, while still maintaining a lower seat to floor height. Disadvantage of the front wheel drive system is the potential for fishtailing – If you go higher speeds the rear of the chair may “wiggle” around. This issue has been resolved on some models but not all. The client also needs to get used to having a lot of the wheelchair behind her, so she needs to be cautious when turning in tight spaces.

• Mid wheel drive

Mid wheel drive wheelchairs have the tightest turning radius. While turning radius does not always equal maneuverability, it is a very beneficial feature for indoor use. It is also intuitive to drive since the drive wheels tend to be right underneath the user. Major disadvantage is a tendency to “highcenter” – this means that with 6 wheels on the ground, the drive wheels can get stuck in the air when initiating a ramp or other obstacle. More and more mid wheel drive configurations offer different tracking and curb assist capabilities – while it is still not the best configuration for outdoors use, the performance constantly improves.

• Rear wheel drive

Rear wheel drive wheelchairs used to offer the best tracking – that is, they were able to go straight without a tendency to veer off to the side. With new gyroscopic and alike technologies, both mid and front wheel drive configurations are getting better tracking now. Due to the inherent tracking

characteristics of rear wheel drives, they may be a good choice for heavy outdoors use and/or if you want high speed. On the downside, much of the user weight is placed above the drive wheels limiting curb climbing ability. Also revolving casters limit footrest placement options.

Ability to accept a ventilator If you child is likely to need a ventilator in a few years, you will need a wheelchair that can support it. It may mean that you need to opt for a bigger, more rugged base than you would otherwise. Keep in mind the size and weight of the ventilator as well as all other accessories you may need to carry (i.e. suction machine). Also choose a configuration where you can still use the seat functions if a ventilator is added.

Seat to floor height Seat to floor height of the wheelchair is very important. Small children benefit from sitting low to the ground, being on peer level for most activities. A generic preschool table is 19” at the bottom from the floor. With the child’s thigh and the wheelchair cushion, it places the necessary seat to floor height low if she is to be able to participate in table activities in a typical/mainstream preschool. However, it is ideal if they can also have access to family dining room, bookshelves, kitchen counters, etc. This need can be met with elevating seats and/or seats that move to the floor; however, there may be funding difficulties. During the evaluation carefully assess how high the seat is from the ground, and what your child needs during her typical daily activities.

Transportability Some wheelchairs come standard with tie town attachment points, while some offer it as an option. It is likely that you child will need those when taking the school bus. As for private transportation, most manufacturers recommend that the child be transported outside the wheelchair in a regular, or specially adapted booster seat. Do not let the large size and the weight of a power chair intimidate you – while it does not fit a regular family sedan, there are alternative and economical transportation options for minivans and SUVs, especially if the child is not seated in the wheelchair. Should you be looking for a crash tested wheelchair? In reality few power wheelchairs are crash tested and crash testing standards are only voluntary. While it might be a consideration, keep in mind that it would significantly limit your choices.

Transportable or folding power chairs A folding power chair may sound like a good idea, but in reality, with today’s technology, it may be a bit of an oxymoron. A folding, transportable power chair needs to be very light weight by nature, therefore it is likely to compromise drive performance. It may be a good idea as a secondary chair or for lighter use, but consider all variables before you opt for one as a primary mobility device for significantly involved children.

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