durable medical equipment (dme) guide for …living with duchenne muscular dystrophy who are ready...

DURABLE MEDICAL EQUIPMENT (DME)

GUIDE FOR INDIVIDUALS LIVING WITH

DUCHENNE MUSCULAR DYSTROPHY

© CureDuchenne • CureDuchenne.org

This Resource is made possible thanks to

Global Genes and the RARE Patient Impact

Grant Program. CureDuchenne was selected as

a recipient of this grant through a competitive

application and review process. This Program

was developed by Global Genes in order to make

a tangible difference in the lives of patients and

caregivers affected by rare disease.


Dear Families and Caregivers,

CureDuchenne was founded on one mission, to cure Duchenne muscular dystrophy. Along our

organization’s journey, we have been fortunate enough to cultivate a community that has continued

to support not only our mission, but one another as well. We will continue to make strides to ensure

the quality of life for all those living with Duchenne all the while continuing to fight until a cure is

found.

This Durable Medical Equipment (DME) Guide has been developed to provide families and caregivers

with a comprehensive resource of equipment beneficial for individuals living with Duchenne. As the

progression of this disease begins to rob individuals of muscle strength and ambulation, mobility

equipment can offer realistic means with which to maintain active participation in activities of daily

living. While parents and caregivers are determined to find the equipment that will help keep their

loved ones active in any way possible, we are determined to help them make the best decision(s) by

providing them with all the resources they need in one place.

This comprehensive guide includes information on equipment, stages of use, and links to

manufacturers for durable medical equipment including: Orthoses, Mobility Devices, Home

Equipment, and Respiratory Devices.

An online version of this guide, the CureDuchenne Cares Virtual Durable Medical Equipment (DME)

Expo is also available. The online version not only offers the information provided within the printed

format, but also offers a chat room, allowing instant connections between families/caregivers and

our CureDuchenne team.

We encourage you to explore the Virtual DME Expo at www.CureDuchenne.org/expo on a recurrent

basis. This is a fluid online resource which will be updated continually to provide current information

on equipment utilized by individuals living with Duchenne.

We are confident that this guide and online Expo will provide valuable information as well as

opportunities for families to connect with families. CureDuchenne is dedicated to foster hope and

empower families of individuals living with Duchenne.

Let’s Cure Duchenne!

Debra Miller

CureDuchenne Founder and CEO


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DISCLAIMER ...........................................................................................................................

ORTHOSES ..............................................................................................................................

Ankle Foot orthoses ......................................................................................................

resting hAnd splints .......................................................................................................

Upper extremity Assist .....................................................................................................

MOBILITY DEVICES ................................................................................................................

AdAptive strollers ..........................................................................................................

mAnUAl WheelchAirs .......................................................................................................

poWer Assist / Wheel systems .........................................................................................

poWer WheelchAirs .........................................................................................................

scooters ........................................................................................................................

seAting systems ...............................................................................................................

stAnders (sit to stAnd) ....................................................................................................

vehicle conversions ........................................................................................................

HOME EQUIPMENT ...............................................................................................................

BAthing / toileting Aids ..................................................................................................

AdApted toilet system ..........................................................................................

hAndheld shoWer sprAy ........................................................................................

pAdded trAnsFer Bench With commode opening ....................................................

shoWerBUddy For the shoWer ...............................................................................

tilt-in-spAce shoWer chAir ...................................................................................

tUBBUddy For the BAth .........................................................................................

trAnsFer devices .............................................................................................................

electric pAtient liFt .............................................................................................

Fixed ceiling liFt And trAck system .......................................................................

gAit Belt .............................................................................................................

mAnUAl pAtient liFt ..............................................................................................

portABle ceiling liFt .............................................................................................

sling With heAd sUpport .......................................................................................

trAnsFer BoArd ....................................................................................................

Bedding ..........................................................................................................................

hospitAl Bed ........................................................................................................

RESPIRATORY DEVICES ..........................................................................................................

non-invAsive ventilAtion .................................................................................................

one-WAy vAlve ...............................................................................................................

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TABLE OF CONTENTS


RESOURCE CENTER

HANDOUTS, LITERATURE, ORGANIZATIONS .......................................................................

“5 eAsy tips For choosing AdA compliAnt toilets” By heAther mAhr ...............................

BreAthe eAsier: A pAtient gUide to ventilAtion therApy – philips respironics .......................

cAring For yoUrselF While cAring For others By cdc .....................................................

eAsy stAnd Assist, eqUipment JUstiFicAtion ........................................................................

one WAy vAlve exercises By dr. sWAnAni, pUlmonologist, cchmc ...................................

pAtient liFts sAFety gUide By FdA ....................................................................................

rehABilitAtion engineering & Assistive technology society (resnA) .................................

VIDEO COLLECTION ..............................................................................................................

ABilities expo recAp .........................................................................................................

AdvAnced poWer WheelchAir options ..............................................................................

Ankle moBility mAnAgement ............................................................................................

eqUipment options For independent liFestyles ...................................................................

moBility scooters ...........................................................................................................

poWer WheelchAirs For dUchenne ....................................................................................

respirAtory heAlth And pUlmonAry cAre – dr. michAel rovzAr ..........................................

trAnsFerring someone With dUchenne .............................................................................

Wrist, hAnd orthosis (BrAce) ..........................................................................................

ACKNOWLEDGMENTS ..........................................................................................................

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DISCLAIMER

All devices shown require individual, professional, and medical guidance for proper fit, safety, and

appropriate instruction and use.

Ankle Foot Orthoses

About

Device made by an orthotist that helps to prevent and/or minimize progressive ankle contractures.

They may be “solid” with a fixed position of the ankle or “adjustable” with a hinge at the ankle to

change the position as needed.

Overview

Purpose: Help to prevent or minimize progressive ankle contractures.

Stage:

Calves are often one of the first and most visible areas of tightness in

individuals living with Duchenne muscular dystrophy. There is increased

fibrosis (fatty tissue) and inflammation replacing healthy muscle cells in

this area. Research indicates that a reduction in contractures are noted

for individuals using a daily routine of stretching and use of ankle foot

orthoses.

Manufacturers

Cascade/DAFO:

https://cascadedafo.com/products/dafo-3.5-softy

Orthomerica:

http://www.orthomerica.com/product/1609172-dorsi-free-stretch

Early Ambulatory Mid-AmbulatoryLate Ambulatory /

TransitioningNon-Ambulatory

Nighttime 6-8 hours.

No walking.


No walking.


No walking.

Daytime or Nighttime

as preferred.

ORTHOSES

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Resting Hand Splints

About

A device, typically assessed by an orthotist, occupational therapist or physical therapist, used to help

maintain flexibility of wrist extension, finger extension and wrist position.

Overview

Purpose: Help to maintain range of motion of wrist extension, finger extension and neutral deviation.

Stage: All stages, beginning when tightness develops in long finger flexors.

Although weakness and tightness in the leg/lower extremity muscles are often observed first,

individuals living with Duchenne muscular dystrophy will likely develop weakness and loss of

flexibility in the arms and hands. Resting hand splints may help to preserve some hand function

longer by maintaining flexibility.

Manufacturers

Restorative Care of America:

http://www.rcai.com/hand_and_wrist_orthoses resting_hand_orthosis.html

Performance Health:

https://www.performancehealth.com/rolyanr-resting-hand-orthosis

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Upper Extremity Assist

About

This can be used for active-assisted range of motion or exercise, self-care, and activities of daily living.

Overview

Purpose: Can be used for active-assisted range of

motion or exercise, self-care and activities of daily

living assistance.

Stage: Non-Ambulatory (with progressive upper

body weakness)

Several factors should go into the decision to

pursue upper extremity assist devices including

but not limited to: cost, ability of the individual

living with Duchenne muscular dystrophy to

activate the device independently and added

width to the mobility device to access doorway

and vehicles.

Manufacturers

Equipois:

http://www.equipoisinc.com/products/xAr/

JAECO:

http://jaecoorthopedic.com/products/

categories/mobile-arm-supports/wrex-%252d-

wilmington-robotic-exoskeleton/

Neater:

http://www.neater.co.uk/neater-arm-support/

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Adaptive Strollers

About

Mobility device issued by an equipment vendor to provide

alternative means of mobility for an individual to conserve

energy with push-assistance from another person.

Overview

Purpose: To provide dependent transportation with some

postural supports.

Most Appropriate Stage for Use: Early Ambulatory

Features: Appearance is similar to commercial strollers and

many models can be folded for easy transport in a non-

accessible vehicle. Models that offer supportive seating,

recline, and tilt are recommended for individuals living with

Duchenne muscular dystrophy.

When to Use: When walking long distances is tiring and/or

unsafe.

When to Avoid: When the child is old enough that a ‘stroller’ is

no longer age-appropriate. Most of the adaptive strollers do

not accommodate children aged 8-9 years and older.

Manufacturers

Convaid:

https://www.convaid.com

Drive:

http://www.drivemedical.com/index.php/wenzelite-rehab/seating-and-positioning/rehab-

strollers.html

Ottobock:

http://www.ottobockus.com/mobility/mobility-for-kids/solution-overview/kids-strollers-

featuring-kimba-family/

Special Tomato:

http://www.specialtomato.com/

Sunrise:

http://www.sunrisemedical.com/manual-wheelchairs/zippie/early-intervention-strollers/

voyage

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MOBILITY DEVICES


Manual Wheelchairs

About

A class of multiple types of mobility devices that

offer solutions for someone in need of energy

conservation and postural support when they have

a caregiver to assist with propulsion of the device in

most circumstances.

Overview

SELF-PROPELLING (usually an ‘ultralight’)

Purpose: To provide manual mobility. It may be

used for dependent mobility or independent self-

propulsion for short distances.

Most Appropriate Stage for Use: Early Ambulatory

through Mid-Ambulatory

When to Use: For long distances where walking is too tiring and/or unsafe.

When to Avoid: Manual chair self-propulsion requires much more energy than walking. Self-

propulsion is not recommended for a primary means of mobility and/or for long distances. There is

no evidence to support any benefits from the exercise of propelling a manual wheelchair and self-

propulsion may accelerate muscle damage for individuals living with Duchenne muscular dystrophy.

Features: Lightweight and many are able to be folded for easy transport. It is recommended to

choose supportive seating that is lightweight and easy to remove for folding during transport.

TILTING MANUAL CHAIR

Purpose: To provide dependent mobility with supportive seating with a seat that will tilt backwards to

allow for postural protection and pressure relief if it is used for an extended period of sitting.

Most Appropriate Stage for Use: All stages. Early Ambulatory through Non-Ambulatory

When to Use: When ambulation becomes difficult and/or unsafe. When tilting backwards is needed

for postural protection and pressure relief during long periods of sitting.

When to Avoid: A manual chair is Not to be used in lieu of a power wheelchair for those individuals

living with Duchenne muscular dystrophy who are ready for powered mobility. Overuse of a

dependent mobility system has been shown to promote ‘learned helplessness,’ where someone

gets used to someone else doing things for them and it interferes with learning to do things for

themselves.

Features: Models that fold easily are recommended. It is also recommended to choose supportive

seating that is lightweight and easy to remove for folding during transport.

Early Ambulatory through Non-Ambulatory

Primary assisted mobility deviceBackup to power chair for transportation and

emergencies

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Manufacturers

KI Mobility:

https://www.kimobility.com/Product.action?productName=Little+Wave+Flip

permobil:

https://permobilus.com/products/manual-wheelchairs-by-tilite/

Sunrise Medical:

http://www.sunrisemedical.com/manual-wheelchairs/quickie/folding-wheelchairs

Power Assist / Wheel Systems

About

Power Assist/Wheel Systems, when added to

a manual wheelchair, allow the user to have

partial or total assistance for propelling the

wheelchair by the system.

Overview

Purpose: Adds power assistance or power drive

to a manual wheelchair. Can be push-rim or

joystick activated.

Most Appropriate Stage for Use: Mid-Ambulatory

to Non-Ambulatory stages

When to Use: Best use is as a supplemental

device to a standard motorized wheelchair when something portable is needed for transportation

and travel situations. The joystick option may be used earlier during mid-ambulatory stage to

conserve energy and promote independent mobility with a device.

When to Avoid: Push-rim activated systems require muscle use for activation and to stop motion. This

is usually not effective and/or safe for most users living with Duchenne muscular dystrophy. Joystick

activated systems provide independent movement, but the wheelchairs they work with will not

provide change of positioning that is necessary for posture and skin protection.

Features: These systems and the manual wheelchairs can be disassembled and loaded in a non-

accessible vehicle and are easier to manage during travel than a full standard motorized wheelchair.

Manufacturers

Alber:

http://www.alber-usa.com/produkte-rollstuhl-zusatzantrieb/zusatzantriebe-fuer-rollstuehle/

aktivrollstuhl-emotion.html

http://www.alber-usa.com/produkte-rollstuhl-zusatzantrieb/zusatzantriebe-fuer-rollstuehle/

rollstuhlzusatzantrieb-efix.html

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Power Wheelchairs

About

Electric-powered mobility devices issued by

an equipment vendor to provide a means of

primary mobility for a user who is unable to

ambulate or is unable to ambulate safely or for

functional distances.

Overview

Purpose: Powered mobility for independent

movement. All patients with Duchenne

muscular dystrophy will expect to require use

of a power wheelchair for some or all of their

independent movement. Power wheelchairs are

best distinguished from ‘scooters’ by the use of

a joystick to operate them and that they offer

many more features such as the ability to use

special seating supports, power seating, and

specialty controls for operation.

Most Appropriate Stage for Use: From Mid-

Ambulatory through Non-Ambulatory Stages

When to Use: Initial use may be to supplement ambulation for long range and to improve safety with

mobility. Long term use will usually be for all mobility in all environments.

When to Avoid: When a user is a young child, they must always be under close adult supervision. As

the child matures and demonstrates safe operation and good judgment, normal age appropriate

supervision is all that is needed.

IMPORTANT FEATURES

Powered Seating: Available on most power wheelchairs and is critical for the user’s health. The

powered seating motions help to find a comfortable position, change position regularity, and shift

weight for skin protection.

Tilt - This feature rotates the entire seat rearward as a single unit. It is useful for shifting the user’s

weight off of the lower extremities to allow for improved circulation as the foot supports raise with

the seat. It is also useful to tilt for ground clearance of the foot rests when outdoors and to give the

user stability when traveling down a slope such as: going down a hill or exiting a van with a ramp. Tilt

alone does not provide for any joint movement of the user’s hips and knees as the foot rest and back

rest angles are fixed in relation to the seat base.

Recline - This feature changes the angle of the backrest in relation to the seat. It is useful for allowing

a change of trunk position which allows the user to move between positions of task performance and

rest while maintaining the support from the backrest. Recline is critically important for maintenance

of hip range of motion. Without this feature and the regular change of hip position, most individuals

with Duchenne will develop hip contractures that will limit hip mobility which in turn affects the

spine.

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Power Elevating Leg Rests - This feature allows the user to extend the foot supports to place their feet

and lower legs in a variety of positions. They will let the user keep the feet in close for transfers and

maneuvering in tight confines and extend them out for stability, comfort, and maintenance of knee

range of motion.

Seat Elevation - This feature raises the height of the wheelchair seat. It is very useful when the user is

reaching for items, to assist with transfers, positioning at various height counters/tables, improved

social interaction and increased visibility and safety when crossing streets and negotiating parking

lots.

Stander - The standing feature can place a user with low to no muscle strength into a standing

position. It offers all the benefits of a static standing frame with independent use on their power

wheelchair base. This makes it possible to stand wherever and whenever the user wishes to stand.

In a standing position, users with arm function can accomplish a variety of activities such as meal

preparation, self-care, and even independent use of the toilet for urination. Standing can help

maintain lower extremity joint range, improve digestion, and lower incidence of urinary tract

infections and all without the risks of frequent transfers to a separate standing device.

Drive Controls: The standard control for most power wheelchairs is a joystick. However, for users with

diminished hand/arm function, there are a wide variety of alternative drive control options. These

include:

• Low force, short throw joysticks

• “No touch” Fiber Optic and Proximity switches

Wheel Base Configuration:

Rear Wheel Drive (RWD) - With the large drive wheels in the rear, this configuration is easier to drive at

high speeds and has better capability over uneven terrain. However, the turn radius is the largest of

the configurations and the front casters can impede footrest movement and width.

Front Wheel Drive (FWD) - The large drive wheels are in the front and the front turn radius is the

shortest. With drive wheels pulling from the front, this configuration does well on uneven terrain and

can be configured to travel at high speeds with special tracking electronics. The absence of pivoting

casters in the front give the most foot room for wider footplates and standing space for transfers.

Mid Wheel Drive (MWD) - The drive wheels on this style are in the middle of the base. This style has

the shortest overall turning diameter. These wheel bases maneuver very well indoors and in many

outdoor environments. With the drive wheel in the center and the casters on both the front and the

rear, this configuration is the most likely of the three to get stuck on obstacles and grade changes.

Newer designs have improved the traction and minimizing this occurrence.

TIPS:

Each wheel base configuration has pros and cons. For a first power wheelchair, try them all out in

your home environment, lifestyle events, and transportation if at all possible. Once a user becomes

accustomed to the way their particular type of chair moves, a change of base configuration will

require the user to adapt to a new way of operating the power wheelchair and moving through

spaces. If a change of configuration appears to offer benefits, be sure to do a trial day with the new

style of wheel base indoors, outdoors, in the vehicle, etc. to be sure that the user is aware of how the

change is likely to affect mobility.

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Manufacturers

AMY Systems:

http://amysystems.com/amysystems-alltrack-m-series/

Drive DeVilbiss Healthcare:

http://www.drivemedical.com/index.php/power-mobility/power-wheelchairs.html

Invacare:

http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat.

jsp?s=0&catOID=-536885238

Ottobock:

http://www.ottobockus.com/mobility/mobility-for-kids/solution-overview/skippi-skippi-plus/

Permobil:

https://permobilus.com/products/power-wheelchairs-by-permobil/

https://permobilus.com/product/f3/

https://permobilus.com/products/power-wheelchairs-by-permobil/front-wheel-drive/

https://permobilus.com/products/power-wheelchairs-by-permobil/mid-wheel-drive/

Pride Mobility Products Corp:

https://www.pridemobility.com/c/jazzy-power-chairs?tabid=tab-index2

Quantum:

http://www.quantumrehab.com/

Stealth Products:

https://stealthproducts.com/splash/drivecontrols/

Sunrise Medical:

http://www.sunrisemedical.com/power-wheelchairs/quickie/rear-wheel-drive/s-6-series

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Scooters

About

These personal electric mobility devices are an entry level option for someone who requires power

mobility. Tiller and/or joystick operated models are available.

Overview

Purpose: Scooter devices are typically used for individuals who require a powered mode of

independent mobility while ambulation is unsafe and/or requires too much energy.

Most Appropriate Stage for Use: Mid-Ambulatory

When to Use: Many individuals with Duchenne muscular dystrophy successfully use these as a means

to augment their mobility while they are still ambulatory. Users are typically in the age range of 6 to

12 years old.

When to Avoid: Scooters do not provide adequate postural support and are not manufactured

for pediatric sized bodies thus they do not provide proper positioning for most. A scooter is not

recommended for someone who has poor sitting endurance, who cannot sit upright with minimal

back support, those who cannot transfer safely on and off of the device, and those who fatigue while

driving the device. Those using scooters need to be monitored for all of these areas to determine

when a more appropriate power wheelchair is necessary.

Manufacturers

Pride Mobility Products Corp:

https://www.pridemobility.com/c/pride-mobility-scooters?tabid=tab-index2

Progress Mobility:

http://www.progressmobility.com/transformer-electric-scooter.

html?gclid=CjwKCAjwzMbLBRBzEiwAfFz4gWaf4ZUwa2Sd6Lj9bDtdN8yl43B_Ff9Wry-qSbtfz6-

4lHz1qgufZBoCzXoQAvD_BwE

SHOPRIDER:

http://www.shoprider.com/scooters/scootie


Seating Systems

About

These are backrests and seat cushions that

are the interface between the user and

the wheelchair itself. They are generally

grouped into ‘off the shelf’ products that

are standard shapes and ‘custom’ products

that are built to fit an individual user.

Overview

Purpose: A seating system is used in

conjunction with a manual and/or power

wheelchair for the purposes of providing

adequate support for an individual when in

a seated position, maintaining alignment,

and providing adequate pressure

distribution.

Stages for Use: Early Ambulatory through

Non-Ambulatory. For individuals living with Duchenne muscular dystrophy, usage of a seating

system is typically correlated to the timeframe when a manual wheelchair is needed.

Off the Shelf

What to Look For: Contoured, supportive back and seat cushions that are comfortable and encourage

the individual to sit with a neutral spinal and body alignment. The individual should rest back into

the seating instead of being pushed forward.

What to Avoid: Seating products that are flat; without contour. Avoid products that are either too hard

to provide comfortable support or too soft to provide postural alignment support.

Custom Configured

These systems are usually built with a variety of foam over a wood or plastic base. A variety of add-

on support pads are often used at the side of the person’s trunk to promote postural alignment.

These systems are not likely to result in successful long-term outcomes for good posture or comfort.

Typically, individuals living with Duchenne muscular dystrophy do not tolerate the trunk laterals and

will remove them, swing them away, or move away from them, resulting in poor posture and more

susceptibility to scoliosis, lordosis, pain, difficulty breathing properly, etc.

Custom Molded

Custom Molded seating is best used when ‘Off the Shelf’ seating is not able to correct or

accommodate postural asymmetries. These custom systems are more expensive, require time for

producing and fitting, requires a ‘wear-in’ period at first, and requires on-going close monitoring.

These are best used only when less complex systems no longer meet the user’s needs. The best of

these systems are made with breathable materials and can be modified for moderate growth and

postural changes.

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Manufacturers

Dynamic Health Care Solutions:

http://www.dynamichcs.com/product_nxt.php?pr_ref=C1&pr_cat=nxt&pr_sku=C1&pr_

title=nxt%20Backs%20and%20Cushions&pr_co=nxt&pr_cty=usa

Motion Concepts:

http://www.motionconcepts.com/matrx_all_us.html

Ride Designs:

http://www.ridedesigns.com/

http://www.ridedesigns.com/wheelchair-cushions

Standers (Sit to Stand)

About

These devices are intended to help support

someone into a partial or full standing position

by using a positioning and supportive apparatus.

This allows the user to benefit from the standing

position that they are unable to reach on their own.

Overview

Purpose: To provide support as needed for an

individual to reach a standing position.

Stage: Late/Transitioning Stage through Non-

Ambulatory Stages

Features: Standers vary including the position that

the user starts out in (prone, sitting, supine), how

the stander raises the person (laying down to stand

or sit to stand), and what power is used to transition

to standing (hydraulic, electric). Some power

wheelchairs have a standing device built into them

which increases use frequency and decreases dependency on caregiver assistance for standing.

When to Use: When a person is unable to tolerate or to safely stand and ambulate for 20 minutes

under their own power or if they are unable to stand in good alignment for prolonged times.

When to Avoid: Standers should not be used if the user cannot tolerate standing for greater than 20

minutes with the device. Some common limiting factors include: lower extremity contractures that

inhibit alignment and cardiorespiratory compromise which worsens with standing.

Manufacturers

EasyStand:

https://easystand.com/product/evolv-medium/


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Vehicle Conversions

About

Accessible vehicles and conversions are vehicles which allow the user of a power wheelchair and/

or other mobility device access to the vehicle while staying seated in their mobility device. Many

accessible vehicle conversion options are available now: Mini-Vans, Full Size Vans, Pick-Up trucks,

SUV’s and specialty conversions.

Overview

Purpose: A Vehicle Conversion system is an adaptation to a vehicle which allows a wheelchair bound

individual to enter the vehicle while remaining seated in the wheelchair. Additionally, options are

available whereby a wheelchair bound individual can drive vehicles equipped with a conversion

system.

Stages for Use: Mid-Ambulatory through Non-Ambulatory. For individuals living with Duchenne

muscular dystrophy, usage of a vehicle conversion is typically correlated to the timeframe when an

individual has increased difficulty safely and comfortably transitioning from a wheelchair to a vehicle.

Full-Size Vans

Pros - These have the most interior room and can accommodate a family and a variety of equipment.

They can be used for more than one wheelchair user at a time.

Cons - With the large size, they can be harder to park and require a lift for entry instead of a ramp.

Examples - For Transit Full-Size, Dodge RAM Pro Master Van, Mercedes Sprinter Mini Vans

Mini Vans

Pros - Generally, more compact and economical. They can fit a wheelchair user and up to 5

passengers depending on the size of the wheelchair and the passengers. Easier to park and will fit in

a standard garage.

Cons - Low ground clearance; caution is needed to not damage the bottom of the vehicle.

Examples - Dodge Caravan, Honda Odyssey, Toyota Sienna, and Ford Transit Connect

Entry Access

Rear Entry:

Pros - The entry to the van is through the rear doors and can be parked in a non-accessible parking

space.

Cons - Entry through the rear eliminates rear storage space and may eliminate much of the rear

seating in the van. This configuration makes it more difficult for a caregiver and/or friend to sit next

to the wheelchair user. Some users will get car-sick while traveling in the rear of a vehicle. Entry/Exit

in a parking lot usually requires backing out into a cross traffic lane. Entry/Exit on the street requires a

curb cutout for sidewalk access and the rear of the car may be blocked by another vehicle. Users are

unable to access the front of the vehicle which inhibits them from being the driver and/or sitting in

the front passenger side


Side Entry:

Pros - This configuration preserves the rear seating and storage area in most vans and often allows

for more passenger space in a mini-van. The side entry allows for easy exit onto a sidewalk from the

street. Most side entry mini vans have the option for the user to ride in the center or in the front

positions as driver or passenger. If there are limited handicap parking spots with room for a ramp

exit, the van can be parked diagonally across two spaces with the ramp exit toward the open end of

the spaces, preserving access for entry/exit. This is the most popular configuration with more options

available for purchase as a used vehicle.

Cons - When parking, 5-7 feet is typically needed to exit or enter the vehicle from the side. Typically,

side entry accessible vans cost a little more than rear entry.

TIP:

It is encouraged that a team approach is utilized when purchasing a vehicle conversion system.

Members of the mobility team can include, but are not limited to: the user (with mobility equipment)

and family, a mobility specialist, current servicing clinicians, and a Certified Driving Rehabilitation

Specialist (CDRS), where applicable.

Manufacturers

BraunAbility:

https://www.braunability.com/

Mobility Ventures:

http://www.mv-1.us/

The Mobility Resource:

https://www.themobilityresource.com/

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Adapted Toilet System

About

Adapted and assisted toileting systems help

provide independence while being designed

to be practical, versatile and comfortable, as

well as, easy to clean. These adjustable toilets

and commodes can be used as a freestanding

commode chair, over the toilet, on the toilet, or as

a shower chair.

Overview

Purpose: Equipment to assist with a safe and

comfortable toileting experience.

Stage: Typically at the Mid-Ambulatory stage and/

or based on overall height of the individual.

Tips: This is a beneficial adjustment especially

when rising from a seated position becomes challenging.

Manufacturers

American Standard:

https://www.americanstandard-us.com/parts-support/innovations/ada-compliant

Kohler:

https://www.us.kohler.com/us/browse/bathroom-toilets/_/N-2569Z1z141u8

BATHING / TOILETING AIDS

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HOME EQUIPMENT


Handheld Shower Spray

About

A handheld shower is a shower head attached to a

flexible hose (at desired length) connected to a water

outlet. It is an essential tool to ensure a safe and

comfortable bathing/showering experience. It allows

a user to have better control and access to maintain

personal self-care needs.

Overview

Purpose: To assist with bathing needs not only for the

caregiver but for the individual as well. The handheld

shower head enables individuals to participate

in activities of daily living which in-turn fosters

independence.

Stage: Typically at the Mid-Ambulatory stage.

Tips:

A hose length of 6 feet is typically sufficient.

Optional features, such as pulsating, vary by

manufacturer and are of personal preference.

This is a beneficial adjustment especially when standing for periods of time becomes exhausting.

Manufacturers


http://www.drivemedical.com/index.php/deluxe-handheld-shower-spray-with-diverter-

valve-398.html

Medline:

https://www.medline.com/product/Handheld-Shower-Head/Hand-Held-Showers/Z05-

PF04679

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Padded Transfer Bench with Commode Opening

About

The transfer bench allows a person to slide over the tub. The Commode Opening allows for dual use

as a toilet and provides easier access for sanitary cleansing.

Overview

Purpose: To provide a safe way to ensure supported body positioning and a comfortable bathing/

toileting experience.

Stage: Typically at the Mid-Ambulatory stage.

Manufacturers


http://www.drivemedical.com/index.php/combination-padded-transfer-benchcommode-

260.html

Medline:

https://www.medline.com/category/Durable-Medical-Equipment-DME/cat500328

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ShowerBuddy for the Shower

About

The ShowerBuddy for the shower combines a shower chair and a commode which can be used for

roll-in showers and for toileting.

Overview



Stage: Typically at the Late Ambulatory/Transitioning stage.

Tips: Make certain to measure the shower intended for use as this piece of equipment requires a

sufficient space for turning radius.

Manufacturers

ShowerBuddy:

http://myshowerbuddy.com/

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Tilt-in-Space Shower Chair

About

This chair is height adjustable for easier transfers and/or toilet clearance. The Tilt-In-Space Shower

Chair provides adjustment capabilities to ensure correct posture for hygiene needs.

Overview

Purpose: To ensure proper support and improved comfort while showering.


Manufacturers

Clarke Health Care Products:

http://clarkehealthcare.com/products/bath-safety/OceanVIP/

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TubBuddy for the Bath

About

The TubBuddy for the bath combines a bathing chair and commode which allows a person to be

transferred over the tub. It can be used for bathing and toileting needs.

Overview




Manufacturers

ShowerBuddy:

http://myshowerbuddy.com/

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Electric Patient Lift

About

An Electric Patient Lift is a portable electric lift

system operated via a wired remote system by a

person other than individual in need of assistance.

Patient lifts are designed to lift and transfer

patients from one place to another (e.g., from

bed to bath, chair to stretcher). These should not

be confused with stairway chair lifts or elevators.

Patient lifts may be operated using a power source

or manually. The powered models generally

require the use of a rechargeable battery and the

manual models are operated using hydraulics.

While the design of patient lifts will vary based on

the manufacturer, basic components may include

a mast (the vertical bar that fits into the base),

a boom (a bar that extends over the patient), a

spreader bar (which hangs from the boom), a sling

(attached to the spreader bar, designed to hold the

patient), and a number of clips or latches (which

secure the sling).

- U.S. Department of Health and Human Services

Overview

Purpose: An Electric Patient Lift is used to safely and comfortably transfer someone from one location

to another.

Stage: Typically, the lift is utilized during the Late Ambulatory stage. It can, however, also be a

beneficial piece of equipment for assistance from the floor when there is a prevalence of increased

falls.

Tips:

A lift system is used in conjunction with a sling, appropriate for size of individual and activity.

The Transfer Lift system is somewhat bulky, so be sure to check your home’s space availability for use

and storage.

A bit of advice from a Mom:

“I recommend to practice using the lift with an able-bodied person before using it with your son.

After a few practice trials, I felt much more confident to use it with my son.”

“There was a definite adjustment period for my son as to the feel of being suspended.”

“After years of use, he now says how did we ever lift me without it?”

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TRANSFER DEVICES


Manufacturers

Joerns Healthcare:

http://www.joerns.com/products/department/9/Lifting---Transfers.aspx

Prism Medical:

http://www.prismmedicalinc.com/patient-lifts.html

Sure Hands:

https://www.surehands.com/products/lifting-systems/

Fixed Ceiling Lift and Track System

About

A Fixed Ceiling Lift and Track System operates on a motorized system allowing for individuals to be

transferred via remote on a track system attached to the ceiling of a home. Patient lifts are designed

to lift and transfer patients from one place to another (e.g., from bed to bath, chair to stretcher).

These should not be confused with stairway chair lifts or elevators. Patient lifts may be operated

using a power source or manually. The powered models generally require the use of a rechargeable

battery and the manual models are operated using hydraulics. While the design of patient lifts will

vary based on the manufacturer, basic components may include a mast (the vertical bar that fits into

the base), a boom (a bar that extends over the patient), a spreader bar (which hangs from the boom),

a sling (attached to the spreader bar, designed to hold the patient), and a number of clips or latches

(which secure the sling).


Overview

Purpose: A Fixed Ceiling lift system is used to safely and

comfortably transfer someone from one location to another.

Stage: Typically, the Fixed Ceiling lift system is utilized during the

Non-Ambulatory stage.

Tip: A lift system is used in conjunction with a sling, appropriate

for size of individual and activity.

Manufacturers

Joerns Healthcare:


Prism Medical:

http://www.prismmedicalinc.com/c-300-fixed-patient-ceiling-lift.html

Sure Hands:


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Gait Belt

About

A gait belt is a device, designed like a regular belt and made of different materials, to be placed

around the waist of an individual requiring assistance in transferring from one location to another

and/or during ambulation for stability.

Overview

Purpose: A gait belt is utilized to assist with transferring an individual from one location to another for

the purposes of transferring and/or assisted ambulation.

Stage: Typically during the mid to late ambulatory stage when the individual is somewhat clumsy and

awkward in his ambulation.

Tips:

Determination of the type of belt material and buckle is based on individual preference.

Cotton is machine washable.

Metal buckles tend to have stronger closure ability over plastic.

Manufacturers


http://www.drivemedical.com/index.php/padded-transfer-belts-655.html

Medline:

https://www.medline.com/product/Washable-Cotton-Material-Gait-Belts/Transfer-

Equipment/Z05-PF04719

Posy:

https://www.posey.com/products/therapy-and-ambulation/gait-belts

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Manual Patient Lift

About

A Manual Patient Lift is a portable hydraulic lift

system manually operated by a user other than

the individual in need of assistance. Patient lifts

are designed to lift and transfer patients from

one place to another (e.g., from bed to bath, chair

to stretcher). These should not be confused with

stairway chair lifts or elevators. Patient lifts may

be operated using a power source or manually.

The powered models generally require the

use of a rechargeable battery and the manual

models are operated using hydraulics. While

the design of patient lifts will vary based on the

manufacturer, basic components may include

a mast (the vertical bar that fits into the base),

a boom (a bar that extends over the patient),

a spreader bar (which hangs from the boom),

a sling (attached to the spreader bar, designed

to hold the patient), and a number of clips or

latches (which secure the sling).


Overview

Purpose: A manual patient lift is used to safely and comfortably transfer someone from one location

to another.

Stage: Typically, the lift is utilized during the Late Ambulatory stage. It can, however, also be a

beneficial piece of equipment for assistance from the floor when there is a prevalence of increased

falls.

Tips:

A lift system is used in conjunction with a sling, appropriate for size of individual and activity.

The Transfer Lift system is somewhat bulky, so be sure to check your home’s space availability for use

and storage.

Manufacturers

Joerns Healthcare:


Prism Medical:

http://www.prismmedicalinc.com/patient-lifts.html

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Portable Ceiling Lift

About

A Portable Ceiling lift is a transfer system that

operates on a track based system and can be moved

from one room and/or track to another. Patient

lifts are designed to lift and transfer patients from

one place to another (e.g., from bed to bath, chair

to stretcher). These should not be confused with

stairway chair lifts or elevators. Patient lifts may

be operated using a power source or manually.

The powered models generally require the use of

a rechargeable battery and the manual models

are operated using hydraulics. While the design of

patient lifts will vary based on the manufacturer,

basic components may include a mast (the vertical

bar that fits into the base), a boom (a bar that

extends over the patient), a spreader bar (which

hangs from the boom), a sling (attached to the

spreader bar, designed to hold the patient), and a

number of clips or latches (which secure the sling).


Overview

Purpose: A Portable Ceiling lift system is used to

safely and comfortably transfer someone from one

location to another.

Stage: Typically, the Fixed Ceiling lift system is utilized during the Non-Ambulatory stage

Tip: A portable ceiling lift system is used in conjunction with a sling, appropriate for size of individual

and activity.

Manufacturers

Joerns Healthcare:


Prism Medical:

http://www.prismmedicalinc.com/p300-portable-patient-ceiling-lift.html

SureHands:


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Sling with Head Support

About

A sling with head support, which is made in a variety of sizes, materials, and colors, is utilized with a

Transfer Lift system to safely and comfortably transition someone from one location to another.

Overview

Purpose: A sling, used in conjunction with a Transfer Lift system, is the piece of equipment utilized to

safely and comfortably transport someone from one location to another.

Stage: Use is typically initiated during the Late Ambulatory stage

Tip: It is recommended that a fabric sling is obtained for activities such as transferring from/to bed/

wheelchair and a mesh sling is obtained for activities involving water such as: showering, toileting,

and accessing a pool.

Manufacturers

Joerns Healthcare:

http://www.joerns.com/product/9/2480/Hoyer%C2%AE-Pro-Slings.aspx?categoryID=9

Prism Medical:

http://www.prismmedicalinc.com/patient-lift-and-transfer-slings.html

SureHands:

https://www.surehands.com/products/slings/

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Transfer Board

About

A transfer board is a tool made from plastic

and/or wood utilized to transfer someone

from one surface to another. It is a handy

tool for transfer assistance from: the bed to

a wheelchair, car to wheelchair, wheelchair

to sofa, etc. Transfer boards are produced

in a variety of shapes, sizes, and materials.

Overview

Purpose: A transfer board is utilized to aid

someone in safely transferring from one

surface to another.

Stage: Typically used at the Late

Ambulatory stage

Tip:

Use of transfer boards can serve as an Energy Conservation measure even for individuals who are in

the Early Ambulatory stage.

Some of the Key Factors in selecting the right board for your family’s needs include:

• Weight capacity of the board

• Features of the wheelchair (does it have swing away arm rails?)

• Majority of locations that the board will be assisting

A plastic transfer board is ideal for bare skin.

Manufacturers

Beasy:

https://beasyboards.com/

Briggs Healthcare:

https://shop.briggscorp.com/e2wShoppingCatalog.

aspx?parentID=3100006651&parentLink=2100000709:3100006277:3100006676:3100006651


http://www.drivemedical.com/index.php/transfer-board-642.html

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Hospital Bed

About

These beds can be used for comfort and

positioning for someone who’s needs

cannot be met by a traditional bed

frame and mattress. These beds are most

effective when used with a specialized,

pressure relieving mattress.

Overview

Purpose: To allow a user adjustability

in position to relieve pressure and to

change position as needed for medical

management and comfort.

Stage: Late/Transitioning Stage through Non-Ambulatory Stage

Features: Home care bed frames typically allow for elevating and lowering the head and the foot of

the bed. Frame motion ranges from manual to semi-electric to fully electric. Some higher end frames

have additional features such as: integrated user position changes (rolling side to side) and advanced

mattresses for position change and pressure relief.

Manufacturers

Graham Field:

http://www.grahamfield.com/Medical_Product_Catalog/Extended_Care_Beds.

aspx?b=10&s=0&c=6&g=92&v=1

Invacare:

http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat.

jsp?s=0&catOID=-536885215

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BEDDING


Non-Invasive Ventilation

About

Non-Invasive Ventilation is a medical term used to

describe equipment that provides ventilator support

without the use of an invasive artificial airway. The

types of non-invasive ventilation devices typically

utilized for individuals with Duchenne include: a BiPAP

(Bi-Level Positive Airway Pressure) ventilator and IPPV

(Intermittent Positive Pressure Ventilation).

Overview

Purpose: To provide ventilatory support without the use of an invasive surgical procedure.

Stage: The use of such devices is determined based on individualized testing and as ordered by a

Pulmonologist.

Manufacturers

Philips Respironics:

https://www.usa.philips.com/healthcare/product/HCDS1160S/bipap-avaps-non-invasive-

ventilator

ResMed:

https://www.resmed.com/us/en/consumer/products/devices.html#Noninvasive-ventilation

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RESPIRATORY DEVICES


One-Way Valve

About

Using a one-way valve to engage in Breath Stacking exercises may assist with keeping the small air

passages open and/or re-open them if they have become closed.

Overview

Purpose: Breath stacking exercises performed with a one-way valve may help in increasing air

capacity in the lungs which will lead to a better cough and ability to clear phlegm from the throat.

Stage: Obtain guidance and direction on use of breath stacking exercises from your Pulmonologist

and Respiratory Therapist.

Tip: Refer to a sample Breath Stacking exercise routine in the Resource Center of this guide.

Manufacturers

Harvard Apparatus:

https://www.harvardapparatus.com/one-way-respiratory-valves.html

Qosina:

http://www.quosina.com/one-way-valve-97351

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RESOURCE

CENTER

36

“5 Easy Tips for Choosing ADA Compliant Toilets” written by Heather Mahr, 2/7/2017

No bathroom is complete without the right toilet. The Americans with Disabilities Act, or ADA,

regulates almost every specification in a bathroom, including toilet dimensions and installation, to

ensure accessibility to all people. Use these tips to help you find the right ADA toilet to transform a

regular commercial or residential bathroom into an ADA bathroom.

1. Check the height: Bring your measuring tape with you. Measure the toilet from the base of floor to

the top of the seat. The top of the toilet bowl, with the toilet seat attached, must be between 17” –

19” after installation to comply with ADA regulations.

2. Give it space: Toilets with an undercut bowl are recommended by the ADA because of the

requirement for toe clearance. The ADA specifies that there should be a gap of at least 9” beneath an

element, such as a toilet, and the floor. The gap should extend at least 25” in depth. An undercut bowl

is a bowl that has a gap between its bottom and the base of the toilet. This allows for more foot space

and a clear path to increase accessibility.

Pro tip: Opting for a wall-mounted toilet is an easy way of ensuring that there is more than enough

room for toe clearance since the plumbing components are concealed behind the wall.

3. Read the label: Toilets labeled “comfortable height” or “chair height” are distinguished by having

a higher seat measurement. This does not always mean the seat height is tall enough to meet ADA

regulations. Some “comfortable height” toilet seat heights only measure to 16.5,” which doesn’t meet

the minimum 17” height.

Pro tip: Check the label to see if the toilet seat is included in the measurement of the toilet. Toilet

bowls often come without the seat because they are an interchangeable element. If it’s not included,

then adding the seat could bring the height to the ADA height requirement because most seats add

at least 1” of height to the toilet bowl.

4. Flush it out: The flush control of a toilet needs to meet the standards for operating parts set by the

ADA. This means that the flush controls need to stand no higher than 44” from the mounting surface

and must be activated with less than 5 lbs of force and without twisting or straining your wrists. Most

toilets that have a flush valve activated by a lever will meet less than 5 lbs of force, but some toilets

that are activated by a flush button will not.

5. Location is key: Consider the placement of the toilet in relation to walls and barriers in the

bathroom. With limited room, flush levers must function in a way where the user can easily flush

the toilet based on the access point for the stall or room. If the right side of the toilet is against the

bathroom wall or partition, then the toilet will have to have the flush control on the left side and vice

versa. The flush control is required to be on the open side of the toilet.

HANDOUTS, LITERATURE, ORGANIZATIONS

RESOURCE CENTER


RESOURCE

CENTER

37

Breathe Easier: A Patient Guide to Ventilation Therapy - Philips Respironics

https://www.cdc.gov/niosh/docs/2015-103/pdf/2015-103.pdf

Caring for Yourself While Caring for Others by Centers for

Disease Control and Prevention (CDC), US

https://www.cdc.gov/niosh/docs/2015-103/pdf/2015-103.pdf

Easy Stand Assist with Equipment Justification

https://easystand.justifyit.com/

One Way Valve Exercises - Dr. Swanani, Pulmonary, Cincinnati Children’s Hospital &

Medical Center

Please Note: This is just an example - follow guidelines set forth by your individual Health Care Team

Breath Stacking with a one-way valve is an exercise that may help keep the small air passages open

or re-open them if they have become closed. This may help you get a big enough breath so that you

can cough better to clear phlegm from your throat. If you find yourself exhaling through your nose,

you can pinch your nose off during this to prevent air from escaping. This can be done in conjunction

with coughing during the exhale to help remove secretions from the throat.

1. Sit on the edge of the bed or chair in an upright position. Relax your shoulders

2. Seal your mouth around the one-way valve with the arrow pointing toward you

3. Take in a normal breath and hold this breath for 1 second. DO NOT EXHALE

4. Take a second breath on top of the first breath and hold for 1 second. DO NOT EXHALE

5. Continue this until you cannot take in any further breaths and then remove the one-way valve and

exhale

6. Repeat this exercise for 5-10 minutes, 1-2 times per day

Patient Lifts Safety Guide by the Food and Drug

Administration (FDA), US

https://www.fda.gov/downloads/MedicalDevices/

ProductsandMedicalProcedures/HomeHealthandConsumer/

HomeUseDevices/UCM386178.pdf

Rehabilitation Engineering & Assistive Technology

Society (RESNA)

https://www.resna.org/


RESOURCE

CENTER

38

Abilities Expo Recap

https://www.youtube.com/watch?v=oGmrXvH8FJE&feature=youtu.be

Abilities Expo is where manufacturers and vendors demonstrate their latest innovations.

Advanced Power Wheelchair Options

https://www.youtube.com/watch?v=omfaInY6USg&feature=youtu.be

Those with Duchenne may have increasing need to have complex technology integrated in to their

power wheelchair to support their body properly and to maintain their ability to be independent

with mobility and activities of daily living.

Ankle Mobility Management

https://www.youtube.com/watch?v=kwHLVTU-36k&feature=youtu.be

Physical Therapy tips and tricks for those with Duchenne muscular Dystrophy. This video addresses

management of ankle contractures with stretching, AFO night splints, serial casting and orthopedic

surgery.

Equipment Options for Independent Lifestyles

https://www.youtube.com/watch?v=TTbzCAxE_tk&feature=youtu.be

Durable medical equipment helps individuals with Duchenne muscular dystrophy maintain

independence throughout their lives. This video features Kevin Philips, ATP/SMS, from Access

Medical.

Mobility Scooters

https://www.youtube.com/watch?v=axlvgsMrICc&feature=youtu.be

Duchenne education series by Duchenne Therapy Network and CureDuchenne. This episode explains

the when, why and how of using mobility scooters for those with Duchenne muscular dystrophy.

Power Wheelchairs for Duchenne

https://www.youtube.com/watch?v=8jMCTjwfpZY&feature=youtu.be

Those with Duchenne muscular dystrophy have a lot of decisions to make regarding specialty

equipment. Choosing the right power-wheelchair is very important.

VIDEO COLLECTION


RESOURCE

CENTER

39

Respiratory Health and Pulmonary Care - Dr. Michael Rovzar

https://www.youtube.com/watch?v=yaUWtHFwAgs&feature=youtu.be

Dr. Michael Rovzar from Paloma Medical Group presented during the CureDuchenne Cares Family

Summit. His session discussed respiratory health, what to expect from your pulmonary care team,

typical pulmonary tests and what the results mean.

Transferring Someone with Duchenne

https://www.youtube.com/watch?v=1VJKVl8aDPw&feature=youtu.be

For someone with Duchenne, moving from one position to another can become very difficult or

impossible without the assistance of someone else or specialized equipment.

Wrist, Hand Orthosis (Brace)

https://www.youtube.com/watch?v=NRE5WAGEtVE&feature=youtu.be

Those with Duchenne muscular dystrophy can experience significant muscle stiffness and joint

contractures in the wrist, hand and fingers. Wrist-Hand-Orthoses can be used to improve resting

position, increase range of motion / flexibility and improve hand use.

Gratitude to the following individuals for their collaborative review, collection, and reporting of the

information within this guide:

Celeste Graham, PT

Hemant Swanani, MD, Pulmonary Medicine

Cincinnati Children’s Hospital Medical Center, OH

Jennifer Wallace-Valdes, PT

Duchenne Therapy Network and Program Director, CureDuchenne Cares

Karen (Courtney) Shellenbarger, RN, APRN, CPNP, Division of Neurology

Cincinnati Children’s Hospital Medical Center, OH

Kevin Phillips ATP/CRTS, Rehab Mobility Equipment Specialist

Access Medical, CA

Michael Rovzar, MD, Pulmonary Medicine, Critical Care and Sleep Disorders

Paloma Medical Group, CA

Tiffany Cook, MS, CCC-SLP, Family Resource Manager, Duchenne Mom

CureDuchenne

2017

ACKNOWLEDGMENTS

durable medical equipment (dme) guide for …living with duchenne muscular dystrophy who are ready...

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