A Funding Proposal - Group C

7/30/2019 A Funding Proposal - Group C

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A Funding Proposal

for

The ALS/MS Mobility Assistance Program(20132014)

Prepared forThe Phi Delta Theta Foundation

2 South Campus Avenue

Oxford, Ohio 45056

ByThe Grand Rapids Neuromuscular Sclerosis Assistance Committee

February 8, 2013


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TABLE OF CONTENTS

PAGE

INFORMATIVE ABSTRACTiii

INTRODUCTION .1

Overview .1

Background1

Statement of Problem2

Need .4

Scope5

PROPOSED PLAN6

Methods.. 6

Costs... ....8

Feasibility... ..11

Personnel ..11

CONCLUSION11

APPENDIX ..13

REFERENCES14


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INFORMATIVE ABSTRACT

The Grand Rapids Neuromuscular Sclerosis Assistance Committee (GRNSAC) has recently

joined forces with the neurology department at Spectrum Health Medical Group to research

means in which to provide support to patients with amyotrophic lateral sclerosis (ALS) and

multiple sclerosis (MS). Two areas that the committee has found the greatest amount of need for

patients with ALS and MS in the Grand Rapids region are: obtaining mobility equipment and

public transportation accessibility.

The GRNSAC is committed to helping the needs of current and future ALS and MS patients

through both its promotion of philanthropic donations, and its portrayal of a greater public

awareness of devices used to help these patients. These said donations will help hopefully offset

the costs that are not covered by insurance providers, and possibly eliminate all costs for those

that are not fortunate enough to have any coverage at all. In addition to personal mobility

equipment, these funds can be used to help fund programs that will make public transportation

more handicapped friendly.


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INTRODUCTION

Overview

The Grand Rapids Neuromuscular Sclerosis Assistance Committee (GRNSAC) was formed to

help provide support and assistance with needed mobility resources for those in our community

with amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS). Due to increasing need

and increasing cost for durable medical equipment (DME), the committee has found itself

lacking the financial means to assist patients with their mobility equipment needs and at times

providing the equipment when it is needed. We have also discovered that more of the patients

suffering from these disorders have to turn to public transportation services at times in order

to get to doctor appointments and therapy appointments because their family has to work in order

to cover the costs of care.

Background

GRNSAC was formed after the neurology group at Spectrum Health Medical Group conducted

surveys with their ALS and MS patient and caregiver populations to find out what resources they

felt were most needed to help ease the burden of the illness and the financial stability of their

families (see Appendix A). As you can see by the surveys completed by the patients and their

families/caregivers, mobility and finances top both lists even though they are reversed in amount

of importance. 77 % of the patients expressed the desire to maintain their independence by

remaining mobile as long as possible. All of the patients suffering from ALS and MS will

eventually need mobility assistance devices such as canes, walkers, and wheelchairs in order to

get around their communities as well as their homes.


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In addition to the need for the DME to remain mobile, these patients also need the ability to

access public transportation services. They will lose their ability to drive; however, they may not

always have a family member or caregiver to drive them to their appointments or to the store.

They should have the right to have access to utilize these services just like anyone in the

community who does not have personal transportation.

The most important reason for being able to provide the mobility assistance services to the ALS

and MS populations in our area is to reduce the psychosocial strains of the patients and their

families. Ask anyone and they will tell you that one of the most important things in life is to be

able to remain independent and to be able to go when and where you want to; these patients are

no different. As stated in the book,Medical and Psychosocial Aspects of Chronic Illness and

Disability, Technology plays an important role in rehabilitation because it increases the

functional capacity of individuals with disabilities. The development of new technologies has

made the home, education, and work environments more accessible for persons with a disability

and has increased their social, educational, and employment opportunities. (Falvo, 2005). Not

only is the technology and mobility access important to the rehabilitation process of the patients

treatments, but it also gives them a sense of still being a valuable member of society when they

can still participate in their work, home, and social lives.

Statement of Problem

Patients with ALS suffer from rather rapidly progressing loss of muscle control, weakness, loss

of coordination, and muscle spasticity that makes it impossible to walk even with the use of

physical therapy (Miller, Gelinas, & OConner, 2005). For patient with MS, the progression is


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not quite so rapid, so these patients can utilize the manual equipment longer than the ALS

population; however their need is still there for the power wheelchair later in their illness

(Robinson & Rose, 2004). The largest factor making mobility an issue for the patients and the

biggest concern for their families and caregivers are the financial means needed to obtain the

necessary DME to remain mobile. Many of the patients that comprise the ALS/MS clinic

population at Spectrum Health Medical Group require assistance with purchasing a wheelchair

because they have either lost their insurance due to not being able to work because of disease

progression or their insurance does not provide sufficient coverage (i.e. high deductibles). Up

until now, the GRNSAC has been able to make up the difference in the costs via fundraisers and

generous community donations. However, due to the weakened economy and unemployment,

we have understandably seen a decreased in the amount of financial donations.

Because of the deteriorating effects that Amyotrophic Lateral Sclerosis has on the nerve cells

controlling muscular movement, certain activities that the average person would consider second

nature or seemingly unimportant can become very difficult. The affects that ALS has on patients

can limit every day activities such as; walking up the stairs, getting up out of a chair, or making

food (Managing Mobility). While it is difficult to imagine living without being able to do these

things alone, there is still another major issue at hand; driving.

It can be a dangerous guessing game trying to figure out when a patient should hang up their

keys and begin relying on other modes of transportation. Muscles weakened by ALS may not

respond quickly, or in some cases at all, to the brains commands to move (Watanabe, 2010).

This can become dangerous for drivers because if their muscles wont respond they could


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potentially miss a turn or worse, not be able to brake on time. For someone to admit that they

cannot drive anymore can be difficult, and for many it is a very sensitive topic. Luckily, there

are at least a few temporary solutions for ALS patients to continue to have their independence in

terms of driving.

Currently the city has standard bus service with buses that state that they are handicapped

accessible. However, upon getting feedback from the patients who have attempted to utilize the

bus service and conducting our own evaluations of the buses; we have discovered that they are

not so handicapped friendly. The main issues identified when researching the bus issues were

that often the bus drivers would not wait for the wheelchair-bound patient to get to the bus and

then there was a lack of personnel to help secure the patients wheelchair into position for the

ride. Taxis were not a viable option either, as it was difficult for the patient to make the transfer

from wheelchair to taxi and sometimes the spasticity in the leg muscles would not allow them to

bend their legs enough to sit in the back seat.

Need

The committee has approached several DME companies in the area to see how our problem

could be resolved. With the help of Kaitlyn McCaughna, the committee DME specialist, we

were able to negotiate a deal to get a DME closet set up at the Spectrum Health Medical Group

neurology practice. This closet is a means for patients to borrow equipment needed for mobility.

The only problem remaining is that the closet only provides basics such as the canes, walkers,

and manual wheelchairs, not electric wheelchairs.


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Our request to the Phi Delta Thetas is to help our organization raise funding to help our patients

meet the financial shortfalls in getting the electric wheelchairs that they need as their disease

progresses. Our pledge to you in return will be that as we help patients get their electric

wheelchairs, at the time that they are no longer able to utilize them to get out of the home, the

patients will donate their chair back to the ALS/MS Mobility Program for another patient to have

that same opportunity.

We would also like your assistance in obtaining funds to help provide public transportation

updates and/or purchasing handicapped, wheelchair accessible transportation vans that will not

only be available for the patients that we work with, but also other handicapped citizens in the

Grand Rapids area.

Scope

Our proposed plan to the Phi Delta Thetas is to uphold theirmission to assist those suffering

from ALS as their brother, Lou Gehrig did. Our goal will be to make sure that no ALS or MS

patient goes without the ability to maintain their mobility and independence for as long as

possible. With the financial assistance of the Phi Delta Theta Foundation, the GRNSAC will be

able to provide a DME loaner program for those suffering from ALS or MS and to update or

provide handicapped public transportation options. Following is our plan along with information

regarding costs, feasibility, and personnel to make this goal a reality.


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PROPOSED PLAN

Methods

The following methods can be used to help us achieve our goal of assisting in the mobility needs

of ALS and MS patients.

Increase Community Awareness. The Grand Rapids Neuromuscular Sclerosis Assistance

Committee is constantly not only trying to find ways to improve the lives of sufferers of ALS

and MS, but make their suffering aware to the public. A survey conducted in the 90s, tied

peoples perceptionof the severity of a disability to the visual-ness of it (Brownlee, 2013). This

can make patients suffering from disabilities shy away from devices that can aid in their

everyday lives because of the public perception of them. The GRNSAC would like to make these

conditions, and their prospective devices, better known throughout the community partly through

making these devices more readily available, and through its philanthropist donors community

involvement.

Prolonging a normal lifestyle. Borrowing certain DME, or durable medical equipment, that was

developed for unrelated disabilities can actually benefit patients of Lou Gehrigs disease. Some

of the first major signs of the diseases progression often happen in the legs. This makes

breaking and accelerating while driving usually the first challenge in driving as the disease

worsens. Currently, there are already vehicular modifications that were designed for paraplegics

that allow them to brake and accelerate without the use of their legs or feet.


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Hand paddles, for both the brakes and the accelerator; permit the driver to retain full control of

their vehicle without the use of their lower appendages. Many ALS patients have turned to this

option on their own in an effort to hold on to their independence and mobility. Not only are

there attachments for the pedals, but some vehicles today are equipped with an apparatus that

helps handicapped drivers in and out of their vehicle, most recognizable is the wheelchair van.

There are, however, some concerns with this option that should be considered as well.

Not all cases of ALS progress along the same timeline, and not all patients will lose control of

the same muscles entirely (What is ALS?). What anyone must consider when exploring

alternatives in order to prolong their ability to drive is what the cost will be, and also what the

benefit will be. One driver and Lou Gehrigs patient, as written in ALS Everyday Living,

recommends that anybody considering these options to weigh out the cost and compare it to how

long they think they will be able to use them (What is ALS?).

If the user is going to have to shell out thousands of dollars for a mere year of use, it might not

be worth it to them. On the other hand, if they can find a vehicle with the proper fittings and it

appears they will be able to get years of use out of it; it might be well worth it. The decision is

ultimately up to the patient whether they want to spend the money or not, because sometimes it

can be quite costly.

Providing Durable Medical Equipment. By making the DME closet available for patients to

borrow mobility equipment, it will help provide assistance to those who have lost their insurance

due to lowered or even non-employment because of the progression of their disease. It will also


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help those that even with insurance, are burdened by constant rising deductibles. Hopefully, in

some cases, we will be able to cover the entire cost of an electric wheelchair for specific patients

that qualify.

Costs

People with disabilities such as ALS and MS usually have Medicare or Medicaid as their

insurance because they are unable to work because of their disability. Many also face losing

their insurance coverage through their spouse, because they must quit work or cut their hours to

take care of the patient as the disease progresses. DME is covered under Medicare Part B with

an order from the patients doctor stating that it is medically necessary; however power

wheelchairs are not covered unless needed for mobility inside as well as outside the home

(Centers for Medicare and Medicaid Services, 2008). DME is paid only at eighty percent which

is why people may have Medicaid as a secondary insurance to pick up that twenty percent that is

not covered by Medicare. ALS and MS patients who have a spouse that still is able to work and

has insurance coverage through their employer may get assistance with the 20% co-insurance,

but some are not as fortunate. The average cost for a power wheel chair is $26,404 so for an

ALS or MS patient with Medicare the co-insurance would be approximately $5280 which is very

difficult for most to afford because of the many other health care expenses that they incur

(Archives of Physical Medicine & Rehabilitation, 2010).

Our proposal is that we help those that do not have the resources to pay the co-insurance

amounts. In addition we would like to help meet this need for those that cant afford to get the

equipment because it is not covered and those that need help but arent eligible for Medicare or


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Medicaid. We are negotiating to obtain assistance from DME providers, hospitals, doctors

offices, and places that support neuromuscular disorders to stock DME mobility closets with

basic devices such as canes, walkers, and manual wheelchairs. Our request from Phi Delta Theta

is to get financial assistance to purchase several power wheelchairs to complete the mobility

closest.

As part of the ALS/MS Mobility Assistance Project, we will take the items donated or purchased

and place them in the Mobility Closet in donated office space at the Spectrum Health Medical

Group neurology clinic. As the ALS and MS patients at the clinic decline in health and require

mobility equipment, they are able to complete an assistance application that will take into

consideration their level of need based on insurance coverage and financial ability to pay. As

their needs for equipment change, they can bring back the equipment that was loaned to them

and trade up for what they are in current need of. All equipment will be cleaned and maintained

by volunteers with health care experience with this patient population. We also have volunteer

social workers who will assist the patients with their assistance application and help negotiate

payment for equipment with their health insurance company.

Using wheelchair accessible vans as an example, there are many different varieties and functions

that can be added or taken away. There are rear entry vans, side entry vans, fold-out ramps and

sliding ramps. Depending on the style of the conversion being done and the model of the van it

is being done to, the modifications can cost between $10,000 and $20,000. For the ramps to the

van alone it is likely to be near $10,000; and with the hand controls for braking and accelerating


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that can add another $5,000 to $7,000 (Understanding How Much Wheelchair Van Conversions

Cost).

Of course purchasing brand new equipment isnt always the only choice. Conversion vans are

also available used from dealerships or for sale by owner, and just like any other vehicle they are

going to vary in price based upon mileage and many other factors. The important thing is that

each patient evaluates their situation on their own. If they come to the conclusion that they

cannot drive with or without the assistance of certain vehicular attachments, they are left with

few choices. Public transportation and relying on other means of travel would have to replace

driving altogether.

Our goal is to help as many patients as possible to maintain their independence; however this

goal takes some financial assistance from partners like Phi Delta Theta and other ALS and MS

support organizations. Please be reassured that we will do our part in utilizing these resources to

their fullest and will continue to play an active role in our local community to continue to raise

monies to keep this project going.


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Feasibility

The feasibility of this project is not a simple measurement. Success may be achieved if a single

ALS or MS patient is provided with an electric wheelchair or a consistent mode of

transportation. Another success would to simply change the public perception of mobility

devices that some patients use as to ease the psychological block that some have because of this

perception. We are able to reach this feasibility by partnering with the Phi Delta Theta

foundation who also shares the common goal of assisting the lifestyle of ALS and MLS sufferers

in any way.

Personnel

The GRNSAC committee is committed fully to the recognition of ALS and MS disability

sufferers, and to promote philanthropic acts to aid in their lifestyle. We are one of many

organizations that are seeking not profit for our own advancement, but for the economic or


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materialistic aid of those less fortunate. Alongside the Phi Delta Theta foundation we are

determined to uphold the upmost of professionalism in our overall mission.

CONCLUSION

Amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS) patients have difficult life. The

GRNSAC recognizes this and will stop at nothing short of easing this burden for at least a few of

these suffering patients. Partnering with the Phi Delta Theta foundation we share this common

goal of providing durable medical equipment at little or possibly no cost to those who may be

less fortunate.

Its important to recognize that there are less fortunate that are not able to complete simple

everyday tasks that most of us take for granted; such as driving or even standing up straight.

With medical costs constantly on the rise, without the help of the GRNSAC and Phi Delta Theta,

some of these patients may not be able to acquire this equipment that can help return their

everyday lives back to some sense of normalcy.


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APPENDIX

Appendix A

77%

18%

4% 1%

Patient needsMobility Financial Medication Caregiver

92%

4% 4%

Caregiver NeedsFinancial Mobility Respite


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REFERENCES

Brownlee, A. (2013). Augmentative communication.

Retrieved fromhttp://www.alsa.org/als-care/augmentative-communication/

Centers for Medicare and Medicaid Services (2008). Medicare Coverage of Durable Medical

Equipment and Other Devices. Booklet. Department of Health & Human Services.

Retrieved from: http://www.medicare.gov/Pubs/pdf/11045.pdf

Driving with a Disability and Buying a Wheelchair Van - Trials and Tribulations (2011, October

10). In ALS Everyday Living. Retrieved from

http://alseverydayliving.blogspot.com/2011/10/driving-with-disabilty-and-buying.html

Falvo, D. R. (2005).Medical and Psychosocial Aspects of Chronic Illness and Disability. Jones

and Bartlett Publishers. Retrieved from:

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Watanabe, L. (2010, May 1). ALS: A Complex Rehab Challenge. InMobility Management.

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http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_121791_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=3&format=EB&lpid=lp_197http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_121791_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=3&format=EB&lpid=lp_197http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_121791_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=3&format=EB&lpid=lp_197http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_121791_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=3&format=EB&lpid=lp_197http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_133585_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=5&format=EB&lpid=lp_1http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_133585_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=5&format=EB&lpid=lp_1http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_133585_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=5&format=EB&lpid=lp_1http://www.carsdirect.com/car-buying/understanding-how-much-wheelchair-van-conversions-costhttp://www.carsdirect.com/car-buying/understanding-how-much-wheelchair-van-conversions-costhttp://www.carsdirect.com/car-buying/understanding-how-much-wheelchair-van-conversions-costhttp://www.carsdirect.com/car-buying/understanding-how-much-wheelchair-van-conversions-costhttp://www.ncbi.nlm.nih.gov/pubmed/20159132http://www.ncbi.nlm.nih.gov/pubmed/20159132http://mobilitymgmt.com/Articles/2010/05/01/ALS.aspx?Page=1http://mobilitymgmt.com/Articles/2010/05/01/ALS.aspx?Page=1http://mobilitymgmt.com/Articles/2010/05/01/ALS.aspx?Page=1http://mobilitymgmt.com/Articles/2010/05/01/ALS.aspx?Page=1http://www.ncbi.nlm.nih.gov/pubmed/20159132http://www.carsdirect.com/car-buying/understanding-how-much-wheelchair-van-conversions-costhttp://www.carsdirect.com/car-buying/understanding-how-much-wheelchair-van-conversions-costhttp://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_133585_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=5&format=EB&lpid=lp_1http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_133585_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=5&format=EB&lpid=lp_1http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_133585_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=5&format=EB&lpid=lp_1http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_121791_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=3&format=EB&lpid=lp_197http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_121791_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=3&format=EB&lpid=lp_197http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_121791_AN?sid=a5fae323-9d86-413f-9340-d196edb7d59a@sessionmgr104&vid=3&format=EB&lpid=lp_197


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What is ALS?. In ALS Association. Retrieved fromhttp://www.alsa.org/about-als/what-is-

als.html
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A Funding Proposal - Group C