A Funding Proposal for The ALS/MS Mobility Assistance Program

(2013 2014)

Prepared for The Phi Delta Theta Foundation 2 South Campus Avenue Oxford, Ohio 45056

By The Grand Rapids Neuromuscular Sclerosis Assistance Committee

February 8, 2013

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 their mission 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 perception of 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

Patient needs
Mobility Financial Medication Caregiver

Caregiver Needs
Financial Mobility Respite

4% 1%

4%

4%

18% 77% 92%

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REFERENCES

Brownlee, A. (2013). Augmentative communication. Retrieved from http://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: http://web.ebscohost.com.proxy.davenport.edu/ehost/detail?vid=3&sid=a5fae323-9d86413f-9340d196edb7d59a%40sessionmgr104&hid=123&bdata=JnNpdGU9ZWhvc3QtbGl2ZQ%3d %3d#db=nlebk&AN=128407

Managing Mobility. In ALS Association. Retrieved from http://webcsoh.alsa.org/site/DocServer/Managing_Mobility.pdf?docID=80782

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Miller, R. G., Gelinas, D. F., & O'Connor, P. (2005). Amyotrophic Lateral Sclerosis. Demos Medical Pub. Retrieved from: http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_121791_ AN?sid=a5fae323-9d86-413f-9340d196edb7d59a@sessionmgr104&vid=3&format=EB&lpid=lp_197

Robinson, I., & Rose, F. (2004). Managing Your Multiple Sclerosis : Practical Advice to Help You Manage Your Multiple Sclerosis. Class. Retrieved from: http://web.ebscohost.com.proxy.davenport.edu/ehost/ebookviewer/ebook/nlebk_133585_ AN?sid=a5fae323-9d86-413f-9340d196edb7d59a@sessionmgr104&vid=5&format=EB&lpid=lp_1

Understanding How Much Wheelchair Van Conversions Cost (2010, May 14). In Cars Direct. Retrieved from http://www.carsdirect.com/car-buying/understanding-how-muchwheelchair-van-conversions-cost

Ward, A., Sanjak, M., Duffy, K., Bravver, E., Williams, N. ,Nichols, M., & Brooks, B. (2010). Power wheelchair prescription, utilization, satisfaction, and cost for patients with amyotrophic lateral sclerosis: preliminary data for evidence-based guidelines.Archives of Physical Medicine & Rehabilitation. PubMed. Retrieved from: http://www.ncbi.nlm.nih.gov/pubmed/20159132

Watanabe, L. (2010, May 1). ALS: A Complex Rehab Challenge. In Mobility Management. Retrieved from http://mobilitymgmt.com/Articles/2010/05/01/ALS.aspx?Page=1
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What is ALS?. In ALS Association. Retrieved from http://www.alsa.org/about-als/what-isals.html

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