Medical Supply Companies, Medicaid and the Madness: My Debacle of Needing New Batteries

After two months of pursuing new batteries for my power chair, my chair has died. Back in February, I noticed that the gage on my chair -- that indicates the charge of the batteries that run my chair -- was acting wonky. This gage consists of three green bars, four yellow bars and three red bars. Typically, the bars gradually disappear to indicate the charge that is left in the batteries; it usually takes about twenty-five miles of driving to completely drain the batteries. However, on the day I began to notice it acting wonky, all of the green bars would all of a sudden disappear, then all the yellow bars would follow, then two of the red bars would disappear as well, leaving one blinking red bar (and this is all within a mile of driving my chair). The bars would then appear again -- without charging my chair -- which is not normal.

At the time, I lived near a medical supply company (MSC), Bellevue Healthcare (BHC), and I instantly went to this MSC to figure out what was wrong with my chair. BHC confirmed my suspicion that it was the batteries, and that they needed to be replaced. So, I ordered new batteries and I left. 

BHC informed me that it could take up to three weeks to receive the new batteries after my insurance company approved the order. BHC also told me that they would contact me when my insurance company did confirm the order. A week after I placed the order, BHC had yet to call me. When I checked in, the MSC told me that they had not contacted me because they had not heard back from the insurance company.

When two weeks had past without hearing back from BHC, I contacted them; when they still did not have an update, I called my case manager at Northwest Regional Council (NWRC). However, she was on vacation, and I just ended up leaving a message. I waited for the week and a half that my case manager was out of the office, and when she did not call back on the day she said she would be back in the office, I gave her another call, but ended up leaving her a second message. She did not call back.

By this time I had called the MSC a couple of times, and had learned that it was not my primary insurance, but Medicaid that was not approving the batteries for my chair, therefore, slowing the process. Since I had not gotten anywhere with BHC, and had yet to hear back from my case manager at NWRC, I gave her a third call, and left a third message; she did end up calling me back, but I missed her call, so she ended up leaving me a message. In the message, my case manager explained that she would be in the office from 1:00p.m. to 3:00p.m. the following day, and to give her a call back during that timeframe; I called her at 1:10p.m., and she was not there. I ended up leaving her a fourth message.

Around the same time, a couple of weeks ago, I received a call from the main office of BHC, the MSC that I am working through to get the new batteries; the lady who called me said she was concerned that I was still without new batteries, but informed me that Medicaid had still yet to approve the batteries, and that they -- BHC -- was doing all they could do to speed up the process.

Fast forward to two nights ago, my chair died; I was going along with my business, and my chair just shut off. I had my mom flip the switch on the back of my chair, off and back on again, just to see what would happen. Unfortunately, this did not do anything, so I had her plug my chair in to charge. Charging did not help either; when the charger was plugged into the chair, it displayed the fault light, and then shut off. This is not normal; when the chair is charging, a red light and green light turns on. Then as the chair begins charging, the red light turns off and the green light begins to blink. It blinks faster and faster until the light stops blinking and becomes solid green indicating that the batteries are fully charged.

Yesterday, I spent the day trying to find out what was happening with the entire battery process. I called my case manager from NWRC for a fifth time; when I could not reach her, I asked my mom to call someone else from NWRC. I called the lady from the main office of the MSC, and my mom said she would talk to someone at NWRC.

The lady from BHC informed me that she had contacted Medicaid every week since I had ordered my new batteries; she explained that is all they could do, and that I could call Medicaid myself and try to speed up the process. I asked if there was anything else that could be done. If it was legal, I would just pay out of pocket for my batteries. However, I can not do this; because I have Medicaid, it is against the law for any MSC to charge anyone with Medicaid. The lady at BHC told me that if someone who was not related to me or lived in my household sent the MSC a check for $469.90, then that would cover the remaining costs (that should be covered by Medicaid), then the batteries could be ordered and sent to the branch of the MSC near me. I questioned the cost as my understanding was that my primary insurance was covering eighty percent of the battery cost, leaving Medicaid with just twenty percent. I questioned the price as I thought $469.90 was quite high for being twenty percent of the total cost of batteries; I know medical supplies are expensive, but not that expensive. It turns out that my primary insurance company is not covering the eighty percent that they would have otherwise if I had met my deductible for the year (which I have not).

Since the lady at BHC suggested that I call Medicaid, I asked my mom to call Medicaid for me and ask them about the progress of my batteries. The guy at Medicaid pretty much told her that it was solely the MSC's job to contact Medicaid, therefore he could not help us! So, the MSC told me to talk to Medicaid, but Medicaid said to contact the MSC and have them pursue the process of ordering batteries as that is their job, not the consumer's.

My mom also called NWRC and asked to talk to someone; she explained what was going on, and that I had been trying to get in contact with my case manager. Even though the lady who my mom talked to was really nice, she informed my mom that she could not help us as she was not my assigned case manager, and that we would have to wait for my case manager.

Today, I received a call from a different lady from the head office of BHC, the MSC that I am working with to get my batteries. She informed me that the reason that Medicaid was not approving my new batteries was due to them not having any record of my power chair. It turns out that when I purchased my power chair, my primary insurance covered the cost of my entire chair, and the MSC that I purchased my power chair through, bypassed Medicaid altogether; this sped up the process then, but unfortunately is complicating this process now.

When I was 18, I was advised to sign up for Medicaid; if I waited until I could no longer be on my dad's insurance through his work, then I would probably not be able to get Medicaid in a timely fashion or at all. However, I am rethinking about how beneficial it really is to have Medicaid; primary insurance has covered all my power chairs; when I have needed other parts for my power chair and my primary insurance has not covered those costs, NWRC covered them (but they do not have money allocated to do that anymore). When I have gone to specialty doctors, Medicaid did not cover the copays either; the only thing Medicaid has covered is a few regular copays I have had to pay in the last five years (but not all of them). I am grateful for these costs being covered, but if Medicaid is not going to cover the majority of my medical costs not covered by my primary insurance, and the system has made it illegal for MSCs to charge me out of pocket, I do not see the point in having Medicaid -- even when I no longer have private insurance through my dad's work.  

I am stuck. I am without a way to get batteries; I cannot buy batteries because I have Medicaid, and Medicaid will not purchase me batteries because they do not have a record of me having a power chair. Without batteries, I am without my power chair; I am without my independence and freedom. I feel as if the system does not want people with disabilities to have access to an equal opportunity, and therefore not be successful in life. I need batteries to be independent, to go out into the community and be apart of society, but when I do not have access to batteries, I am trapped, and forced to be hidden away. When I am out of sight, I am also out of mind; no one has to see me anymore, and they do not have to wonder about me anymore. When I am hidden away, I am forgotten. No one assists the forgotten, and I will be trapped forever.

Equality Over Special Treatment: Why I Feed the Parking Meter in Downtown Bellingham

I park in Downtown Bellingham quite a bit. The accessible parking is terrible; accessible spots are far and few, and when an accessible spot does exist, it is not up to code. This has been justified by making all parking  -- accessible or not -- free to any person who has an accessible parking placard or license plates. However, this solution does not solve the problem of making parking more accessible; it actually perpetuates the problem.

The city no longer views accessible parking as an issue that needs updating; if people who need accessible parking are given the privilege of parking anywhere for free, then there is a belief that there is no longer a need to provide adequate accessible parking. This belief reflects the logic that if I give one group of people X, who do not have access to Y, and Y is accessible to all other people, but all other people are not privileged to X, and X is considered just as good of option as Y, then X is considered an adequate alternative to Y for the group of people who cannot access Y. However, we do not live in the 60's; the Jim Crow laws have been repealed, and the belief of "Separate but Equal" should have been put behind us. Never the less, this belief still holds strong as acceptable when regarding the disability community.

Instead of having the ability to park in adequate accessible parking and paying to park -- just like all other people utilizing downtown parking -- people with disabilities have been granted the ability to just park for free. I do not feel privileged; I feel patronized. I interpret my so called privilege of parking for free an attempt to keep me quiet - that I should not point out the inadequate parking downtown. And, in attempts to make me feel special, I instead feel like a second class citizen. I rather pay -- just like everyone else -- and have adequate accessible parking. I have paid, and will continue to pay, every time I park downtown (when there is a meter). I am a person, utilizing a spot, the law says to pay, so I am going to pay. I should not be exempt just because it is considered a solution to the problem.

Many people who are not disabled see this as a problem as well, but in that they should not have to pay either. This perpetuates resentment towards the disabled. Other people do not typically see both sides, so they do not understand that the accessible parking is not adequate, and the free parking for those with disabilities is not special treatment, but a copout. None the less, I do agree that if disabled people do not have to pay for parking, neither should anyone else.

The solution is simple; parking should be adequately accessible. This would be a win-win for all citizens and the city. Everyone could park downtown (and therefore pay), and the city would pull in a greater amount of revenue. For a town that claims to be so progressive, they certainly do a poor job of practicing true equality.

The Bathroom Beat: WWU's Humanities Bathrooms

The main bathrooms in the Humanities Building (HU) on Western Washington University's (WWU's) campus are not accessible to anyone who is unable to access stairs; these bathrooms are located in the basement, and the elevator cannot access the basement (just floors one, two and three). However, this is not in violation of the Americans with Disabilities Act (ADA) as an accessible bathroom is located on the second floor.; according to the ADA, as long as there is one accessible bathroom (or stall) provided in the same building where a bathroom is -- or even multiple bathrooms are -- available to the public, then the building is compliant with respect to that standard.

Flight of stairs that leads down to the bathrooms in the Humanities Building.

Even though HU fulfills the ADA requirement of having an accessible bathroom, the bathroom in the basement is in violation of the ADA. This is not due to this bathroom being located down a flight of stairs, nor is it due to none of the stalls fulfilling any other requirements; it is, however, in violation of the ADA due to there not being any indication of where the nearest accessible bathroom is located. At the top of the stairs leading to the basement bathrooms, there is a sign informing people that there are bathrooms located at the bottom of the stairway; however, this leaves anyone who cannot access stairs to have to search for a different bathroom. Not only does this sign not indicate the location of the nearest accessible bathroom, it also does not provide the information in Braille and the characters are not raised. There are signs labeling the bathrooms at the entrance to each restroom, but they do not provide the necessary information either -- which would be ironic if they did as most people who need an accessible bathroom would not descend a flight of stairs to use the bathroom -- and the information that is provided in not up to code as well.

A yellow sign indicating where the bathroom are located hangs at the top of the stairs.

An up-close picture of the sign indicating the location of the bathrooms in the Humanities Building. It is an 8.5" x 11" yellow sign that reads, "RESTROOM DOWNSTAIRS," in black, capital letters, with a large, black, downward-pointing arrow underneath the words. 

When a bathroom is not accessible, the ADA requires that there is an indicator of where the nearest accessible bathroom is located. WWU thought to put a sign at the top of the stairway as a courtesy to students, but this sign is only a courtesy to students who can access the stairs. WWU prides itself on being inclusive and welcoming, but simple acts of courtesy -- or lack thereof -- speak loudly when it comes to the true character of a person or entity. A sign is small, it is simple, but when such a thing is lacking, so is the inclusive nature and welcoming atmosphere. 

The Bathroom Beat: WWU's ENVS Bathrooms

A bathroom: a place that can bring me excitement -- like that of a four year old on Christmas morning -- or disappointment -- like that of the same four year old when they find their stocking stuffed full of socks. Bathrooms are not always accessible, making it either extremely difficult or impossible for me to use. This leaves me in pursuit of having to venture on to find an accessible bathroom, or just plan my day around having to return home to use my own bathroom. When I find an accessible bathroom that is truly wheelchair friendly, I am filled with excitement; I am not kidding, I love it when bathrooms are accessible! I also will plan my route in accordance with any accessible bathroom. The accessible bathroom on the ground floor of the Environmental Studies (ENVS) building on Western Washington University's campus is one of these bathrooms.

In ENVS, this one accessible stall is the only accessible stall for all six floors; even though there are bathrooms provided to the public on each floor in ENVS, there is not one accessible stall on each floor, but just one on the ground floor. The American with Disabilities Act (ADA) only requires one -- not one per bathroom, but just one per building -- so why provide more (even if that requires those who need an accessible stall to travel six stories in order to use the bathroom)?

This one bathroom stall is one of my favorites on Western's campus. It is rarely used, one of the largest ones (101.5"x74"), the stall door swings in (which makes it easier for people in wheelchairs to close), the lock does not require twisting or pinching, and the bathroom door has an access button; however, even this amazing bathroom stall is in violation of a handful of standards set by the ADA (i.e. there is not a pull handle on either side of the stall door, the sink drain pipes are not covered, the handle on the paper towel dispenser is too high, the coat hook is also too high, and there is a heater vent -- an obstructive object --  that is in between the toilet and the wall). Even though this bathroom stall is the only accessible stall in ENVS, it is not the only ENVS bathroom that is in violation of the ADA.

In ENVS, there are whole and half floors. The half floors are located on the west end of the building and can be accessed from the whole floors by half flights of stairs or via the west elevator. The whole floors are indicated by a whole number, while the half floors are indicated with a decimal (i.e. 0.3). The whole floors include the Ground floor (G), the first floor (1), the second floor (2), the third floor (3), the fourth floor (4), and the fifth floor (5). The half floors start with 0.3, and continue up to include floors 0.4, 0.5, and 0.6. Each of the whole and half floors (except 0.6) provide a bathroom to the public; all the bathrooms above G are not accessible; however, half of them are more than just unaccessible, they do not indicate the location of the nearest accessible bathroom; some are also lacking contrasted characters and Braille, which is a violation of the ADA.

The ADA requires a sign -- which should hang on the wall to the latch side of the door -- that indicates the sex of the bathroom in contrasted and raised characters as well as in Braille. The ADA also requires that if the bathroom is not accessible that the sign indicates where the nearest accessible bathroom is located. On 0.3, there is not a sign at all; this means it is in violation of the ADA.

On 0.4, there is a men's bathroom; there is also a men's bathroom on 4 (unlike the other floors where the half floor has a bathroom for one sex and on the whole floor one is provided for the other). So, there is a paper sign indicating where the nearest woman's bathroom is located (one floor up or one floor down); however, this paper sign does not have raised characters, information written in Braille, nor does it indicate where the nearest accessible women's bathroom is located. There is a men's sign, that does follow the ADA standards, but it is only pertinent for men who need to use the bathroom. It is possible that a woman in need of an accessible bathroom travels to the bathroom located on 0.4, sees that the nearest women's bathroom is one floor down, travels there just to find that the bathroom is not accessible and on top of that does not have a sign to indicate the location of an accessible bathroom; therefore, this woman has yet to relieve herself, and has spent time unsuccessfully searching for a bathroom.

A close-up of both the Men's and Women's bathroom signs on floor 0.4 of the Environmental Studies building. Both signs are to the right of the door. The Men's sign is dark blue, with a white symbol of a male is located in the top middle of the sign. Right underneath the symbol of the male, the word "MEN" is printed in white, capital letters. Below the word "MEN", the sentence of, "Accessible restrooms on ground floor", is written out in white lettering. Under this sign, a 8.5"x11", white, paper sign hangs. At the top of this sign it reads, "Where?", in black lettering. Under the "Where", there is a black rectangle centered in the middle of the white paper. In the top, middle of the black rectangle there is a white symbol of a female. Right underneath the symbol of the female, the word "WOMEN" is printed in white, capital letters. Below the word "WOMEN", the sentence of, "One floor up or down", is written out in black lettering. 

On 0.5, the sign is hung on the door, not on the wall. This is a violation of the ADA, and is a simple standard that WWU cannot even follow. It is important that the signs are in similar places so they are quick and easy to find; it is also important for the sign to be on the wall -- rather than the door -- in case the door is open. If the sign is not in the expected place, it may be difficult for a person who is legally blind or blind to find the bathroom in time.

The bathrooms on floors 1 through 5 all have signs that fulfill the set standards of the ADA. However, floors 1 and 5 have unisex bathrooms, unisex bathrooms that are large enough to be equipped with the necessary standards to meet the requirements of the ADA and become accessible. The ADA does not say that buildings cannot have more than one accessible bathroom or stall, but just indicates that as the minimum.

I am thankful that Western has provided an accessible stall in ENVS that both my PCA and I can easily fit in; however, getting to that bathroom can be an adventure. When having a class on the fourth floor,  I had to take the elevator down five stories to get to the bathroom; the west elevator can take up to five minutes to arrive at any given floor. When needing to use the bathroom, no one wants to travel five or six floors to use the bathroom, nor does anyone desire to wait for an elevator for five minutes before traveling those five or six floors. One day, I waited for the elevator in ENVS for a couple minutes before someone walked by and informed me that the elevator was broken. I then had to travel across the building to the east elevator and wait for it to arrive, ride down the five floors just to have to travel back to the west side of the building in order to use the bathroom. Why was there not a sign indicating that the elevator was broken and to instead use the east elevator; is it too much to ask for people to be courteous enough to value others' time?

Having to use the bathroom is something that is apart of daily life; most people do not think about this daily activity and take it for granted. Many people with disabilities plan their day around the bathroom; knowing if and where there is an accessible bathroom can be crucial information. The accessibility of a bathroom can be a factor in whether or not a person feels welcome; having an accessible bathroom can say a lot to a person with a disability. Having a public bathroom without having an accessible bathroom is not legal, and having a bathroom with the international access symbol that is actually not accessible is misleading and not acceptable. Please remember that people with disabilities are people; people need to use the bathroom, therefore people with disabilities need to use the bathroom too.

It's All About that Label: How the Term Compliant Does Not Always Mean Equal

My family was recently in the market for a new range. Rather than purchasing a typical range, my parents decided to purchase one that is ADA compliant. This means all the buttons and knobs are on the front of the range, right above the oven door. Even though the ADA range would still not allow me to cook most things -- due to lack of strength -- we decided that it would still be a suitable choice. If needed, I would now be able to turn the oven on or off; if someone was on the way, I could preheat the oven, and if someone left while something was cooking, I could turn the oven off. The knobs on the front would also allow me to have access to the stove top. I can cook a few simple things -- like an egg; it takes me a while, but I can do it (however, the pan needs to be out, the egg needs to be in reach, and I need a table knife and a dish as well)!

This all sounds nice, but there is a catch! The ADA compliant range that my parents purchased cost almost $400.00 more than the typical version of the SAME range. Just because an appliance is ADA compliant does not mean it should cost more; accommodations that are supposed to make things equal should not in turn put an extra hardship on the person it is supposed to be for. It does not matter if the ADA compliant range has a lower demand than the typical one; all people should have access to an equal opportunity to buy the same range -- cost included. A range should not be bumped out of someone's price range because it is ADA compliant; it is not fancier or more high tech, it is just accessible. In fact, the ADA compliant range that my parents purchased is LESS fancy and LESS high tech than the same typical range. The ADA compliant range is lacking the clock and the timer that comes on that typical range. And, the manual that we received is not for the ADA compliant range, but for the typical one; the diagrams for the buttons and knobs do not match up at all. Good thing we have operated a range before!

Another ironic thing about this ADA compliant range is that the diagrams next to the knobs are not raised and Braille is not present next to the words to provide accessibility to people who are blind or visually impaired and read Braille. So, would the stove my parents purchased be considered ADA compliant for just people who use wheelchairs? And, is there a separate range that is ADA compliant just for people who are blind? And, how much would that range cost? Why can't all ovens just be created to accommodate all people for the same price? 

I am blessed to have parents that have the ability to afford a range that is $400.00 more than the typical version. But, if I was purchasing this range on my own, there is no way -- at this point in my life -- that I could have afforded the luxury of having an accessible range. This also goes for many other people with disabilities. 

Extra costs do not stop at ranges, but extend to so many other things that many people use on a daily basis; the extra cost for accessible ranges is just a scratch on the surface of what people who use wheelchairs typically face. However, they are not the same for all people with disabilities, but no extra costs for the SAME things should exist for any of us. Accessibility should not be a luxury, it should instead make things equal. 

Ms. Wheelchair Washington 2016 Platform: Equal Opportunity

Two weekends ago, I had the opportunity to participate in Ms. Wheelchair Washington 2016. As part of the competition, we were required to give a two minute speech about our platform. The platform that I ran on was "Equal Opportunity". Here is my speech that I gave:

"Over the years, I have observed that people with disabilities do not always have access to an equal opportunity. Whether this is due to ignorance or deliberate behavior, it needs to be changed.

Equal opportunity includes having equal access to transportation and housing as well as equal access to education and jobs. However, change takes time and the most important change has to do with people's mind sets.

I have heard three common beliefs: 'Disabled people get enough. Why should disabled people get special treatment. The lives of people with disabilities has dramatically improved over the past fifty years, so why are you complaining now?'

As Ms. Wheelchair, I will teach that accomplishments are not extra but equal and I will advocate for change in order to achieve an equal opportunity for all.

Having a disability is a part of who I am; however not having access to an equal opportunity is what truly makes me disabled.

As I close, I leave you with a poem I have written that reflects this thought.

I may have a disability, 

but I am only disabled when people look past my abilities.

I may not be able to walk, 

but I am only disabled when I am without my wheels.

I may not be able to climb a flight of stairs, 

but I am only disabled when there is not an equivalent elevator. 

I may not be able to step down when the sidewalk ends, 

but I am only disabled when there is not curb cut out.

I may have a disability, 

but I am only disabled when people look past my abilities."

More Than Just a Pot of Gold at the End of the Rainbow: Chasing the Dream of Becoming an Advocate

Recently, I came to the recollection that my dream of becoming a disability advocate (other than as a hobby), may not actually be a realistic profession. I realized that it had almost been a year since I had graduated from college, and that a piece of me would really like an income, and some financial independance. I began looking for other jobs, pursuing a totally different route. I had always been looking for any job that I was qualified for, but looked at it as an avenue to building the resources that were needed for becoming a disability advocate. However, when I became discouraged, I began looking into jobs -- like selling insurance -- that could become a life long career. This was until a couple weeks ago.

All of a sudden, opportunities began to open up. In the past couple of weeks, I have had the opportunity to speak on two different college campuses, one at Western Washington University (WWU), and one at Eastern Washington University (EWU). At WWU, I spoke to a class learning about accommodations and barriers; I answered questions, and then I took them on a tour of campus showing them accommodations and barriers! At EWU, I spoke to a class of potential teachers; I talked about my journey through the public school system, the accommodations I received, the barriers I faced, and recommendations I had for them. I have also been invited back by both of the professors to speak in future classes. I have also been asked by another professor -- who teaches at WWU -- to speak to her class next quarter as well!

A couple Friday's ago, I also had the chance to talk with a person who has been greatly involved with the organization, People First. He has been to Olympia many times and lobbied for people with disabilities. I also talked with another person who has been greatly involved in both the organizations Superior Alliance for Independent Living (SAIL) and the Center for Independence. Both of these people, as well as these three organizations strive to better the lives of people with disabilities through advocating for an equal opportunity and to be treated as people. 

I have also been blessed with the opportunity to volunteer in a Special Education classroom at Bellingham High School! On the first day, I told them a little about myself, and my experience as a student with a disability. We talked about the importance of self advocacy and knowing what accommodations one needs in order to have an equal opportunity. So far, volunteering in this class has been a challenging but amazing experience, and I look forward to many more days of working with the fabulous teacher (who gave me this opportunity), and her students!

This past Sunday, I  was blessed with the opportunity to run for Ms. Wheelchair 2016; it was one of the best experiences of my life, and I am so thankful that one of my amazing friends encouraged me to run! Though I finished as first-runner-up, I had an amazing time, learned so much, and made so many connections! Thank you to everyone who has made Ms. Wheelchair possible, and to everyone who came out and supported us! I looked forward to competing for the title next year!

When I participated in Ms. Wheelchair Washington, I met so many amazing people! Ms. Wheelchair America was there; she is fabulous, and shared so much of her knowledge with us. She taught us that Twitter is a great tool for advocating, as well as introduced us to an app called Camcard which scans business card information right into your contacts via a photo! It is a timesaver and is especially amazing for someone who has difficulty adding contacts or reading the small print on business cards. I am also looking forward to meeting up with Ms. Wheelchair America 2016, when she returns to Washington for a conference in June! Thank you Ms. Wheelchair America for encouraging me, and thank you for spreading your knowledge while advocating for people with disabilities! I am so honored and grateful to have met you!

Another person that I met is the President of Talk and Roll. He speaks and conducts himself with composure and confidence, and has an incredible story to share. Thank you for encouraging me as well, and thank you so much for MCing for Ms. Wheelchair Washington 2016! I am so glad to have met you as well!

In the past couple of weeks, I have learned so much, grown as an advocate, and I am now beginning to dream again about being a life long disability advocate.