Education is the Key to Success: Self-Advocacy

People with disabilities make up the largest minority group in the United States as well as in the entire world. Anyone, at any time, can become a part of the disability community. However, people with disabilities are underrepresented and often unheard. Even though the way people with disabilities are perceived and treated has greatly improved throughout the past forty years, ableism still has a strong presence here in the United States. The best way to abolish this poor treatment of people with disabilities is to eliminate ignorance through education; education is the key to an equal opportunity.

Educating the populous includes practicing self-advocacy. Others are not going to know what you need unless you educate them. Speak up about what you can do and speak out against all the misconceptions about the things society believes you cannot do. You are your best advocate; you know who you are and what you need. Do not allow the world to define who you are, educate the world on who you truly are. 

If you are not able or do not feel comfortable being your primary advocate, designate someone you trust that will relay your wants and needs by being an advocate on your behalf. This action, in itself, is being a good self-advocate as you are expressing that you need help in the area of advocating. 

Practicing self-advocacy is not only beneficial to one’s self, but can grow into advocating for others; with becoming confident in being an advocate for one's self, comes the realization that being a self-advocate can translate into advocating for others. And as one with a disability advocates for others with similar needs, allies will realize the importance of education and access, and come along side in the advocating journey.

Advocacy is a way to educate society on the importance of access that will provide an equal opportunity for all. 

A Birthday Shared: The ADA

Today marks the 27th anniversary of the signing of the American with Disabilities Act (ADA). As an advocate for people with disabilities, I am honored to share a birthday with this revolutionary document that is valued with such a high importance in the disability community. The ADA was passed with the intent of bettering the lives' of people with disabilities. It was meant to create access and allow more job opportunities. The ADA did create huge improvements, but 27 years later, complete compliance is no where near to being met! We have a long way to go! 

Assistance for Independence: The Need for In Home Care

Yesterday, the Fourth of July, was the day that we as a nation celebrated our country's independence. I am personally blessed to have the independence that accompanies being an American; however, as a person with a disability, I see independence in a different light as well. I have independence due to having a wheelchair that gives me the freedom to get to where I need to go; I have independence due to having other technologies -- such as my Mac and iPhone -- that are innovative designs that allow me to access things that I would not be able to otherwise; I have independence due to having Medicaid which provides in home care services that allow me to live a productive life.

In home care allows any person who requires assistance with daily tasks to live in their own home, but it means so much more than that. In home care allows people to not be institutionalized, to hold a job, to come and go when one pleases, to participate in society and to even pay taxes. In home care allows all of these typical daily activities by providing assistance to fulfill everyday needs. These needs include getting up in the morning, going to the bathroom, taking a shower, making and eating meals, going to the grocery store, keeping up with chores and then getting back into bed.

However, those of us on Medicaid were close to temporarily loosing our in home care services. Fortunately, this did not occur. As of last Wednesday morning, the State of Washington settled on a temporary budget for the year. July 1, the budget deadline has rapidly come and gone. If a budget would not have been determined prior to that date,  there would have been a partial government shutdown. This means programs, such as Medicaid, would have halted. Without Medicaid, coverage of in home care would pretty much cease to exist as 99% of in home care coverage that does not come from out of pocket is paid for by Medicaid.

This shutdown would have been a taste of what is to come if the American Health Care Reform Act of 2017 is passed; it will repeal federal funding for Medicaid causing states to make hard choices and in turn eliminating in home care for thousands of people who depend on this service to live their daily life with independence.

Medicaid is already a broken system. Many states do not invest in their in home care services. Instead of proving people with the resources they need to be successful and active members of society, people who need assistance are left to fend for themselves and in turn end up being a burden on society. Even in states with the best Medicaid funding -- such as Washington State -- many people live with the bare minimum care, and even though they can survive that is just it, they are just surviving in order to participate in society an live life. Lots of sacrificing is made even to the point of it being a detriment to one's health. There is also the issue of staffing quality in home caregivers, not to mention staffing caregivers at all (but this is a topic for another time).

Medicaid needs to be reformed; cutting it is not the answer.

Please contact your Senators and express the negative affects that the cuts to Medicaid funding could bring upon the disability community. Medicaid is more than just an insurance plan for low-income families; it is a livelihood for many people who need the assistance to lead independent lives.

My Poisoned Chalice: How My Dream Wheelchair Morphed into a Nightmare

My dream of owning a Redman power wheelchair has now morphed into a nightmare.

I can remember back to the first time I saw the Redman power chair. It was sometime in my early teenage years. I flipped open a Quest magazine, and there it was, all in it's glory, a rear-wheel drive, standing, power wheelchair. It had once only been a fantasy, but there on that glossy page, it became a potential reality. Every time I received a new copy of Quest, I would skim through the pages, find my guilty pleasure, and stare at it, wishing that one could one day be mine.

See, I wanted to stand, and be mobile at the same time. The standing frame that I owned at the time, was stationary. I hated being trapped in one spot. I also desired to stand not only for health purposes, but for the benefit of height as well. Gaining height would allow me to freely access more things on my own, and it would also allow me to look people in the eye, rather than always sitting at butt-eye level.

Back when it came time to order my second power wheelchair, I asked about a rear-wheel drive, standing power wheelchair. I was told that that type of chair did not exist, that standing chairs only came in front-wheel drive. I did not want a front-wheel drive. Therefore, I did not get a standing chair.

Fast forward about five years, it came time for me to get another power wheelchair. Again, I expressed my desire of having a rear-wheel drive, standing power wheelchair. This time when inquiring about the wheelchair that I wanted, I included the name Redman. Again, I was told that that type of chair did not exist. And again, I did not get a standing chair.

So, when it came time to order my last power wheelchair, I decided to skip over a local Durable Medical Equipment (DME) supplier, as they would not sell the Redman chair to me; I contacted the company that sells Redman, Medi-chair, myself. At first, this seemed like a wonderful idea. Cutting out the DME made it possible for me to get the exact type of chair that I had been dreaming of for over half my life. However, this dream that finally seemed to be turning into reality quickly became an illusion.

When my rear-wheel drive, standing, power wheelchair was delivered, it was too big; the depth of the seat was too long, the height of the back was too tall, and the chair was too wide. The chair, right from the start, was not what I had ordered. Yes, it was a rear-wheel, standing power wheelchair, but it was not made to my specifications; nor did it have the "pediatric" kit installed as promised (that my insurance company approved).

I made the mistake of accepting the chair. It did not fit all my needs. It did not give me the proper support. However, being without a power wheelchair for months in combination with finally getting the chair of my dreams, made me delusional to the fact that this new chair was not made to fit me properly.

The chair not fitting properly was only the beginning. Medi-chair began claiming that my insurance company did not pay the full price for my chair. It boils down to Medi-chair believing that they should be in network with my insurance, but my insurance deeming Medi-chair as out of network. If Medi-chair was in network with my insurance, my insurance would not have paid much more than they did; however, I would have been covered from having my chair repossessed!

When ordering the Redman chair, Medi-chair said that they were satisfied with the amount my insurance indicated that they would pay. So, for them to claim after the fact that my insurance company did not pay enough means that they lied about being content with how much my insurance company said they would pay.

Medi-chair also claimed that they did not contract with Medicaid. This means that Medi-chair would not be able to bill Medicaid, and that the co-pay would fall on me. After not receiving the desired amount from my primary insurance, Medi-chair requested to contract with Medicaid; in doing so, they asked for their contract to retroactively go back to July, 2016. This would allow Medi-chair to bill Medicaid, even though they were not contracted with Medicaid during the time of the purchase. Medi-chair was able to get Medicaid to pay $8,848.92 more on top of my what my primary insurance covered and my co-pay.

Medi-chair had also told us that we would not be charged anymore than our co-pay; this is stated in our contact. However, if they have already lied to us, then how can I believe that they will not charge me any more out of pocket? My insurance company told my mom that Medi-chair said they had no such deal with regard to not charging me more out of pocket. See, I am not completely protected by Medicaid. Medicaid paid on certain parts of my chair; Medi-chair cannot charge me for the remaining amount on these line items. However, Medicaid did not pay for other specific parts of the chair and Medi-chair CAN in fact bill me for any of the remaining expenses on these line items not touched by Medicaid.

The other day, I received an appeal letter addressed to my insurance company supposedly written by me, but actually written by Medi-chair; I was expected to sign this appeal letter and send it back to Medi-chair so they could send it on to my insurance company. This appeal letter would be the third appeal letter sent to my insurance company -- the first two written by me -- pleading for the entire cost of my chair to be covered. This DME letter was poorly written, and I really did not like what it said; I would not have written the letter in the manner that Medi-chair did. Medi-chair explained that they wrote the letter using tactics in order to persuade the insurance company to pay more money. This sounds manipulative to me.

Medi-chair explained that in order to get the appropriate amount of money, they have to use these tactics all the time. They also said that in order to get the desired amount, they must negotiate with the insurance company and that they do this every day, all day. They expressed that they expected to have to work with my insurance company as this is normal for them. My question is, if they expected to have to negotiate with my insurance to get the payment they desired, why did they tell me that they were happy with the amount my insurance agreed to pay?

My insurance company has officially decided that they will not pay Medi-chair anymore money. Medi-chair explained that my insurance company was going to pay $6,200.00 more, but then retracted their offer. At first, my insurance company did not say that they had offered Medi-chair more money, but when asked, my insurance company explained that when they offered Medi-chair the desired $6,200.00 more (a quote expressed by Medi-chair as a reasonable amount), Medi-chair began to try and negotiate for even MORE money. This is when my insurance company retracted their offer and said they would not pay Medi-chair anymore money. My insurance company does not negotiate with companies. They agreed to Medi-chair's price, but when Medi-chair wanted even more, my insurance company said no, and retracted their offer all together. My insurance company agreed that the extra amount that Medi-chair was primarily seeking was a reasonable amount; however, once Medi-chair began bartering for even more money my insurance company became unwilling to continue working with Medi-chair.

I am still unsure if I will be able to keep my chair, and if I will be able to do so without a large bill falling on my shoulders. I am also not positive of whether I will be able to get my chair to better fit my specifications or even serviced. If Medi-chair does not get the desired payment for my chair, who's to say that Medi-chair will not treat me with good service in the future? I already feel like I have been treated with subpar customer service.

I also do not want to invest money into a chair that could ultimately be taken away. I would love a lower back and more adequate side laterals, but this would come by my expense.

It is better to have an uncomfortable chair, than to not have one at all.

I am stuck in the middle of two entities, two entities that claim to have my best interest; but, I do not feel as if they have my best interest. If they truly had my best interest, I would not be in this situation.

MEDI-CHAIR WAS HAPPY TO WRITE A LETTER STATING THAT THEY WOULD NOT TAKE MY CHAIR BUT THEY DID NOT INDICATE WHETHER OR NOT THEY WOULD PROMISE TO NOT CHARGE ME THE REMAINING COST OF THE CHAIR. I would rather they just take the chair than promise me that they will not take the chair and end up charing me an outrageous amount of money that I cannot afford to pay.

UPDATE:

The information above was written awhile ago. I held this post as I was waiting for the final outcome to be resolved. I have now received the official letter signed by Medi-Chair stating that my power chair has been paid in full. My insurance company really stepped up and reflected their claim of "having my best interest". My insurance company decided to return the $6,200 offer to the table as long as Medi-Chair would write that this amount would complete the bill of sale of the chair and that Medi-Chair would not come after me for the rest of their desired money.

This whole experience with Medi-Chair has prompted me to speak up about what happened to me in order to eliminate the DME's ability to manipulate Medicaid to get the most money possible.
First, it should not be legal for DME's to charge a consumer a co-pay and then retroactively pick up another payment from Medicaid.
Second, DME's have figured out how to break down the cost of durable medical equipment into specific line items so that they can charge the consumer out of pocket if Medicaid does not pay toward a certain line item.
It is illegal for DME's to charge consumers with Medicaid any extra "out of pocket" costs. However, if each part of a piece of equipment has a separate price, then DME's are not technically charging a consumer the difference of what Medicaid does and does not cover.
It is very important to know how your insurance company works and what your policy states. This experience has also taught me to understand the difference between the terms "In-Network" and "Out-of-Network". Always ask you insurance company whether they contract with the DME and if the purchase will be In-Network. Do not trust what the DME says!

Speechless: A Season to Remember

A week ago today, the season finale of ABC's Speechless aired.

Speechless, a relatively new sitcom, is about JJ DeMao and his family. JJ DeMao, played by Micah Fowler, is a teenage boy who has Cerebral Palsy. Speechless is a light-hearted show, that not only portrays life with a disability, but life as a part of a quirky family.

Speechless is a revolutionary show for multiple reasons.

Micah Fowler, the actor who plays JJ, actually has Cerebral Palsy. It is extremely uncommon for Hollywood to cast a role of a disabled character let alone let a person with a disability fill that role.

JJ DeMao is not a prop in the background, he is not that token disabled supporting character; JJ is the main character. More often than not, Hollywood does not cast a disabled character as a main role. However, Speechless is different; this show is built around JJ's life.

That is another thing, in Speechless, JJ is just living his life. He is not planning his death, he is not being portrayed as just surviving or as dying; HE IS LIVING! When Hollywood does write a part of a main character who is disabled, that character is often too sick or disabled to enjoy life, and the show typically ends with the death of that character.

JJ is not a burden, nor is he one to be pitied. He is a person who is loved dearly by his crazy family. He is a DeMao, and that is just as important -- or possibly even more important -- to his character, than him having Cerebral Palsy.

Speechless portrays JJ's life well; this show reveals what life is like with a disability, but at the same time does not obsessively focus on the disability. It is refreshing to see disability portrayed as just one aspect of a person's life, not as their sole definition of life. JJ is a person, not his disability, and Speechless expresses this well.

Comfort v. Ease: The Wheel of Two Chairs

I have two wheelchairs: one manual, one power. A manual wheelchair is operated via one's own power or the power of another, while a power wheelchair can be electronically operated via a pair of batteries and a joystick.

My manual chair -- which I paid for out of pocket -- is exactly what I wanted. It fits me well; it is comfortable and fashionable. I feel good in my manual chair, not just physically, but psychologically as well. However, there is one catch, I am not physically able to independently propel my chair in order to get from point A to point B.

On the other hand, my power chair solves this; when using my power chair, I have the ability to freely move from point A to point B with the flick of  joystick. Unfortunately, my power chair -- which was purchased through my insurance -- is too big for me; the seat swallows me; there is not enough support and I slide all around. This is uncomfortable, and within a half an hour of sitting in my power chair, I am in pain. I need to use my chair ALL day; it is my access to mobility, but it is not enjoyable to be in pain all day.

This dilemma has forced me to choose comfort over ease.  Either way, I have mobility, but it would be more beneficial to me if my power chair fit me comfortably, on top of giving me my independence and freedom.

I have had this power chair for a little less than a year, and with the insurance under which I am covered, I can get a new power chair every five years. So, here's to figuring out how to be comfortable and independently mobil. I am pretty sure four years will give us enough time to figure that out... However, getting a new power chair does not guarantee that it will be a comfortable fit. And, by that point, who knows what insurance will be like, and if I will even be able to get another power chair (but that is a topic for another time).  

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