The Michigan Supreme Court issued an opinion on July 31 upholding the Michigan Court of Appeals’ decision regarding auto crash survivors injured before 2019 changes to the auto no-fault law. This ruling solidified that changes to attendant care and other lifetime benefits cannot be applied to individuals injured before the law went into effect.
In a 5-2 opinion authored by Justice Elizabeth Welch, the court ruled the legislature had not clearly articulated an intent to slash benefits for those injured before the changes took effect. This ruling, and the decision from the MI Court of Appeals, are based on the pivotal case, Andary v. USAA Casualty Insurance Company.
“The insurance policies covering plaintiffs Ellen Andary and Phillip Krueger bind the insurance companies to their promise to provide Personal Injury Protection (PIP) benefits under the law that existed at the time of injury to those individuals covered by the policies,” Welch wrote. “The 2019 no-fault amendments do not clearly convey an intent to retroactively modify these vested contractual rights.”
Despite the decision, survivors injured after July 2, 2021, including anyone injured in the future, will still be held to the arbitrary and dangerous limitations placed on care reimbursements and attendant care.
Rally at the Capitol
The Coalition to Protect Auto No-Fault (CPAN), the statewide consumer advocacy group that has long fought to protect victims of catastrophic auto crashes, called for legislative urgency in passing Senate Bills 530 & 531 during a rally held on October 3, 2023 at the State Capitol.
The Rally to End the Care Crisis, which featured legislators, providers, and survivors, shined a light on the devastating impact of the state’s 2019 auto reform changes.
Former Detroit Red Wing, Vladimir Konstantinov beds in his manual wheelchair on stage accompanied by 2 women making presentation during a rally.
This important event was cohosted by CPAN alongside the Michigan Brain Injury Provider Council (MBIPC), the Brain Injury Association of Michigan (BIAMI), We Can’t Wait, the Michigan Interfaith Coalition, and the Michigan Home Care and Hospice Association.
The rally included emotional speeches from crash survivors and their loved ones, care providers, advocates, and lawmakers. In a poignant moment, the rally gave tribute to the 14 individuals who have passed away due to a loss in care since the new law went into effect in 2021.
Senate Bills 530 & 531, recently introduced by State Senator Sarah Anthony and State Senator Cavanagh. If passed, these bills will correct critical flaws stemming from auto insurance changes signed into law in 2019. The bills will create a reasonable and sustainable fee schedule that must be honored by insurance companies when paying post-acute rehabilitative care providers. Post-acute providers offer highly specialized care to patients once they have left a hospital setting.
On October 4, 2023, a hearing took place before the Senate Finance, Insurance, and Consumer Protection Committee, where Michigan Paralyzed Veterans of America (MPVA) submitted a “letter of support” for SB 530 & 531.
Under the law as it currently stands, survivors injured after June 11, 2019—including anyone injured in the future—will be held to the arbitrary and dangerous limitations placed on care reimbursements and attendant care. According to a study by the nonprofit public health institute MPHI, as of April 2022, the law had forced the closure of more than 30 businesses and the loss of more than 4,000 jobs. Those numbers will continue to increase unless a reasonable fee schedule is implemented by the Michigan Legislature.
Long-term care providers do not just provide care to people seriously injured in an automobile accident, but to others in the disability community like seniors, veterans, and persons with other serious illnesses/injuries, such as COVID-19. The loss of these services will impact far more than auto injury patients.
Woman walks along Capitol lawn in Lansing, Michigan as she views different wheelchair models during the rally.
For over two years, crash survivors, their family members, providers of essential rehabilitation services and care, and disability advocates at the state level have pleaded for a narrow fix to the law so that crash victims, regardless of the date of their injuries, have access to the care they need. An arbitrary reduction in reimbursement rates by nearly 50% for people injured after June 11, 2019 is not just and it cannot sustain the continuum of care auto crash survivors need. The legislature must act swiftly to implement a solution that is fair, reasonable, sustainable, and that ends the care crisis for people injured in car crashes after June 11, 2019.
While the auto insurance industry continues to defend the oppressive fee cap system and its devastating impact on crash survivors, offering no acknowledgment of the catastrophe, MPVA and its coalition partners continue to offer solutions and urges the legislature to ACT NOW. We are hopeful that the Governor has been genuine with past comments expressing a desire to have a solution on her desk and we are optimistic this legislature will deliver with urgency.
Since 1961, the Michigan Paralyzed Veterans of America (MPVA) has been on a mission to change lives and build brighter futures for our seriously injured veterans with spinal cord injury/diseases, and by extension, all Michiganders with a disability.
A monumental moment that opened opportunities for people with disabilities to meet our collective goal of accessing our communities fully and independently began with the passage of the American with Disabilities Act (ADA) in 1990.
ADA Makes History & Changes the Face of America for the Better
July 26, 2023 marks the 33rd anniversary of the ADA. When signed into law, the ADA was hailed as the most sweeping civil rights legislation since the Civil Rights Act of 1964. Thirty-three years after its passage, the importance of the ADA cannot be denied. It has propelled into the spotlight accessibility, universal design, and the ideal of equal opportunity for those of us who live with disabilities.
As society has become more aware and advocacy has developed since the passing of the ADA, the recognized definition of “disability” has been changing for the positive. In the 1970’s, the concept of a disability referred to an underlying physical or mental condition, and was largely looked at through a medical model as solely an inability to function in some manner.
Today, disability is recognized as a complex interaction between a person and their environment. A person with paraplegia, for example, may be considered disabled due to their physical impairment, as well as by the barriers in the environment that prevent full social participation.
As public perception of disability has changed over time, so have the goals of programs supporting people with disabilities. In the past, the emphasis was to provide support to people with disabilities primarily through benefits or through a medical focus. Today, the emphasis has shifted to supporting independence and promoting involvement in all aspects of society. The latter ideal constitutes the promise of the ADA. We have come a long way, but there is still far to go to create equitable access to opportunities, rights, and quality of life for people with disabilities.
Our Fight for Access Continues, Grows
Disability is the only minority that anyone can join, at any point in their lives. It is an experience that will touch most Americans at some point during their lives. People with disabilities come from all walks of life, in all colors, sizes, genders, and ages. Those of us living with disabilities bring something to the table–whether that be select skills or the resourceful perspective that is needed at every table in every function of society
Since the signing of the ADA much has changed: America has built environmental, transportation, and telecommunications infrastructure that is being transformed by the gradual approach to accessibility improvements, encouraged by the ADA. These changes come at a critical moment as America is aging and the demand for accessibility is increasing, however organizations like the MPVA continue to advocate for accessibility to be a priority in every initiative, before need outpaces access.
Because of the ADA, millions of Americans have grown accustomed to accessibility features when they are pushing strollers or pulling roller bags through public spaces, when they are watching captions in an airport, or when they are riding their bikes up/down curb cuts. And those access areas don’t begin to speak of the rights and freedoms that have benefited society as a whole, thanks to the ADA.
Prior to the ADA, millions of Americans with disabilities lived as second-rate citizens in a society where there were no laws to ensure access to allow them to benefit from the most basic freedoms most Americans take for granted. People with disabilities who had traditionally been isolated, not only from mainstream society, but from one another, began coming together to speak out and demand an end to unequal treatment and to seek control over their own lives.
We must NOT BECOME COMPLACENT. We must continue to advocate and be consistently involved in making sure the ADA remains a living document. Returning to the past CANNOT not be an option!
The Work Ahead
MPVA President, Michael Harris, speaks from his wheelchair with Michigan’s Lt. Governor Gilchrest during the summer of 2023 as he advocates for disability rights and equality for veterans and people with disabilities in the state of Michigan.
When analyzing the ADA, I would not characterize it as a complete success, but I would NEVER characterize it as a failure. It represents the MINIMUM of what our nation should be striving beyond to create equal access for ALL. I think it is an important piece of legislation whose promise has not been “fully realized.” When the ADA became law, many people with disabilities assumed that the front door would be opened, and everyone would welcome us with open arms! Why wouldn’t they? However, as we know, this has not been the case.
We still have work ahead of us, especially for those of us in the disability community and our allies.
There has been a growing misperception in the disability community that I would like to shed light on: OUR ELECTED OFFICIALS ARE NOT AUTOMATICALLY ENFORCING THE ADA JUST BECAUSE IT IS A LAW! State and local officials throughout Michigan do not have the authority to enforce Title III (Discrimination in Public Accommodation Access) of the ADA on behalf of the Federal government unless the Department of Justice certifies Michigan building codes. The likelihood of that happening anytime soon is very remote.
It is for that reason that we become advocates in the communities we live in so we can provide insight on the issues that prohibit us from being active participants. We need to work to create conditions and to establish policies/practices which facilitate the full integration and participation of persons with disabilities into all aspects of community life.
As I have benefited by the actions of the thousands of people who have come before me and advocated with me, it is up to all Michiganders to pave the way for those who will come after. In advocating for our rights, disabled people must work to establish several important principles, two of which I will list here:
Advocate and bring awareness to allow people to be considered based on their humanity and on individual merit, not on stereotyped assumptions about disabilities.
Advocate for society to make necessary changes to ensure that people with disabilities can equitably access their communities without having to encounter barriers to access, whether that be architectural, societal or in equal pursuit of happiness.
We all know that the world is an easier place to get around than it was prior to the ADA, and our gratitude for the men and women who fought for its passing and enforcement can never, will never, be overstated. Stadiums, amusement parks, public parks, and theaters that would otherwise have been poorly designed, are now enjoyed by and accessible to all because we advocated. Rights, equality, and access to opportunities are guaranteed because we gathered together to demand what the Constitution granted us as an inalienable right.
It is obvious that the ADA has made a difference in the lives of so many. But there are many others who still face barriers, barriers that man-made structures create and barriers stemming from people’s mindset and attitudes. Those barriers took generations to create. It will take continued vigilance and dedication to remove them.
As we celebrate the 33rd anniversary of this civil rights law, let us commit to redouble our efforts to identify and knock down the remaining barriers to full citizenship that continue to hamper the beautiful vision of the ADA. Working together, we can build on the progress of the last 33 years and create an America that celebrates and invests in the talents, dreams, and aspirations of its more than 61 million people with disabilities.
The appearance of her photograph, interview clips, or #ThankYouJudy may have slowed to a trickle in the past few weeks, but news of this Humble Heroine’s passing earlier this month is still affecting the disability community in ways we will not fully realize for years to come.
Video preview of Netflix clip how the ADA change the world with a photograph of Judy Heumann speaking into a microphone. The photograph is transposed over a black and white drawing of a woman in a wheelchair accessing an elevator
For myself, there was a time when Judy represented all the work that had been done. Past tense.When I started working in the independent living/disability rights arena when I was 24, I had to watch several videos and read articles written by activists like Judy: Ed Roberts, Justin Dart, etc. I teared up watching the video of protesters with disabilities during the 1977 sit in to fight for signage of the 504 section of the Rehabilitation Act or the video of people leaving their crutches and wheelchairs behind to climb the steps of the Capitol in Washington DC. Judy Heumann was often featured in these clips, well spoken and determined, I was glad that she had done this work on my behalf; I could move forward for myself and with my work helping people with disabilities discover more choices to increase their quality of life. When I was surrounded by people with disabilities, I was quickly disabused of the notion that the quest for a equal rights and opportunities that Judy began had reached its end.
For people with disabilities, the rights and opportunities we have come to depend on in this country can shift or stumble. I am proud to be part of an organization like Michigan Paralyzed Veterans of America that continues to have their finger on the pulse of disability rights in Michigan and advocates when the health of these rights are at stake. To those reading about Judy's impact, I say, "Be inspired. Get involved. Do something."
Michael Harris, MPVA President
Mother of the disability rights movement, Judy Heumann
Mother of the Disability Rights Movement, Judy Heumann speaks at her TED talk. Judy is a light skinned woman wearing glasses, with short brown hair, wearing a red cardigan, beige shirt, and black pants and sitting in a power wheelchair
In fact, while the world mourns and takes time to reflect, our friend’s passing reminds us there is much to be done in the fight for equitable rights and opportunities for the disability community in the United States. There are many ways be inspired by the journey of Judith Heumann’s life and the choices she was defined by:
Video clip description: black and white still image of Judy Heumann testifying before Congress. She wears large rimmed glasses and has shoulder length hair. The text on the screen reads the “mother of the disability rights movement”
You can read about Judith Heumann’s life, 1847-2023, in the press release/ obituary here.
The true legacy of Judy’s life is the impact that her activism has had on the individual lives of those with disabilities, as well as on the mindset of inclusion, opportunity, and equality everywhere. She writes in Being Heumann,
“Some people say that what I did changed the world. Really, I simply refused to accept what I was told about who I could be.And I was willing to make a fuss about it.”
September is #ReservedForAReason parking awareness month here at the Michigan Paralyzed Veterans of America, and it is also national #SCIAwarenessMonth. Now is the perfect time to remind drivers of do’s and don’ts for dealing with disability parking (whether you’re permitted and doing the parking in a reserved space, or need to learn more about how to #HonorTheSpot).
Do’s & Don’ts
DO Park cleanly within the lines for your designated spot
DO Stay aware in parking lots that drivers/pedestrians moving about may be below your line of sight
DO Understand that some individuals parking in a reserved permit spot may have invisible disabilities. Many with autism, multiple sclerosis, chronic pain disorders, etc. may be eligible under Michigan law for a reserved parking permit
DO Keep the access aisle clear!! (The access aisle is the cross-hatched area attached to many reserved spaces to provide room for drivers with ramp equipped vehicles or those that need space for a wheelchair.)
Crosshatched sections belong to the reserved disability parking spaces as an “access aisle”.
DON’T block the access aisle in any way
DON’T assume someone with a permit may not need it simply because they don’t “look” it
DON’T be in a hurry! Many drivers have experienced the temptation of “I will just be a second!”, however to #HonorTheSpot, please commit to taking the few extra moments to ensure your that all drivers and passengers can enjoy access that is often taken for granted.
Please follow the Michigan Paralyzed Veterans of America’s Facebook page at www.facebook.com/michiganpva for more tips on how to advocate, as well as Michigan news & event updates for veterans with spinal cord injuries, resources for the disability community, and more!
In the Andary litigation, the Plaintiffs were supported by Coalition to Protect Auto No-fault (CPAN). Their lawyers strongly urged that it would be fundamentally illegal to enforce the medical benefit cuts recently enacted by this new legislation against catastrophically injured auto accident victim0 who purchased auto no-fault insurance policies and sustained their injury many years before the legislation was passed.
The legal team representing Ms. Andary (George Sinas and Mark Granzotto) argued that the no-fault insurance policies purchased by the Plaintiffs in this litigation specifically required the payment of “all reasonable charges” for reasonably necessary medical care. Given that contractual right, insurers had the duty to pay those benefits to the Plaintiffs without regard to the recently adopted “government fee schedules” and the limitations on reimbursable family provided attendant care. They urged the Court of Appeals to find that any such effort to apply these new benefit cuts to Plaintiffs injured prior to the effective date of the law would constitute an illegal deprivation of the legally vested contractual rights of these Plaintiffs.
In that regard,, George Sinas, lead counsel for the Plaintiffs, stated, “The central point in this entire litigation is the fact that, long ago, the Plaintiffs in this case purchased auto no-fault insurance policies that would not permit the enforcement of the benefit cuts contained in this new legislation. In other words, these Plaintiffs purchased the contractual right to the payment of benefits without regard to these limitations and the insurance companies involved charged these Plaintiffs a premium to provide those benefits. Now the insurers contend they can deny payment of the benefits that they sold to these patients, while retaining the premiums they collected to pay them. That would be a classic example of governmental interference with private contract rights as well as a governmentally sanctioned windfall for auto insurers who would no longer have to pay benefits that they collected money to provide.”
The Court’s decision in this case will affect thousands of Michigan citizens who purchased no-fault insurance policies and were injured many years before these new laws were passed. There are approximately 18,000 of these patients who were catastrophically injured and whose medical expenses are now being reimbursed by the Michigan Catastrophic Claims Association (MCCA).
“So, we’re not dealing with litigation that is only going to affect a few people. On the contrary, the number of victims who will be severely harmed if such benefit cuts are allowed by the Court of Appeals, boggles the mind,” said Sinas. “Recently we’ve seen media stories about the famous Detroit Red Wing hockey player, Vladimir Konstantinov, who was catastrophically brain injured many years ago in a motor vehicle accident and will now lose essential in-home attendant care and thus may be forced to live in an institution. The sad thing is there are thousands of Vladimir Konstantinovs whose tragic stories have not been publicized, but who are similarly experiencing the prospect of such frightening outcomes,” said Sinas.
The MPVA Perspective
Our members were promised lifetime Personal Injury Protection (PIP) benefits at the time of our automobile accident and have not been given the whole truth about no-fault reform. Yes, technically one can say that people still have lifetime PIP benefits, but the long-term care benefits will be paid at 55 percent going forward, which removes true access to long-term care. These benefits do not have value if there is not a care provider to accept the extremely low payment.
MPVA members paid their premiums on time, in some cases for decades, before an auto accident disrupted their lives. At the time, their no-fault coverage guaranteed that all necessary medical care in case of a catastrophic auto accident would be provided for as long as it was needed.
Michael Harris, MPVA President
These policies required reimbursement for all reasonably necessary attendant care services regardless of the identity of the attendant care provider and all reasonably necessary products, services, and accommodations regardless of any government-imposed fee schedule. These were the benefits in place of the date of their accident.
Now, our state government is retroactively altering those rights in violation of the pre-existing contractual obligations between the injured individual and their insurance company. MPVA believes that the retroactive application of these two main provisions to individuals injured in an automobile crash prior to the date the new law went into effect is unconstitutional.
According to CPAN, It is not clear when the Court of Appeals will issue its decision. It could be weeks or months, court observers predict. Regardless of the decision of the Court of Appeals in Andary, it is highly likely that the case will be appealed to the Michigan Supreme Court for a final determination.
On April 29, 2022 the MPVA was honored to partner with the Michigan Department of Civil Rights (MDCR) to present a webinar on a topic that is all too often taken for granted today–that is, until something happens and the choice is between speaking up or shutting down: disability rights.
The MDCR helped to navigate our members, citizens of the disability community at large, and business leaders through the complex seas of civil rights laws, such as the Americans with Disabilities Act (ADA), Fair Housing Act (FHA), and Air Carrier Access Act (ACAA), among others. As important as it is to understand the rights available to the disability community, it is also important to understand the next steps that are available in this world that is often not made for ALL individuals. With that in mind, they also broke down the different agencies where someone could file a complaint or suit, if needed.
The MPVA President, Michael Harris, spoke about the need to advocate for our rights and speak up when someone feels those hard-fought rights have been infringed; “It takes all of us to advocate for ourselves and, at the same time, other members of our community in order to keep disability rights safe and moving forward.”
After the presentation participants had the opportunity to ask questions of the presenters. Several citizens of the disability community in Michigan asked the MPVA questions on topics ranging from what rights are protected for travelers with disabilities on airlines to issues stemming from changes in catastrophic care due to the auto no-fault insurance changes.
The webinar is presented in full on the MPVA YouTube channel. As always, feel free to reach out to the MPVA—whether a Member or not—for advocacy assistance or questions. Also, MDCR generously has provided contact information to team members adept at guiding individuals through a deeper understanding of their civil rights.
Featured image: Michael Harris speaks to a crowd of fellow catastrophic auto accident survivors, family, and advocates at a #WeCan’tWait rally in Lansing Michigan.
Michael Harris, MPVA President discusses how Michigan’s Auto No-Fault insurance used to provide him with hope and protection as a catastrophic injury survivor.
As many have seen, the worst predicted side-effects of Michigan’s 2019 car insurance reform are coming true.
The Devastating Impact That Has Just Begun
A new report by the Michigan Public Health Institute (MPHI) shares details of the initial impact from the recent changes caused by auto no-fault insurance reform. This report looks at how the current portion of changes has affected the ability for crash survivors to access medical care.
The Brain Injury Association of Michigan (BIAMI) commissioned this independent study by the MPHI to document the impact of the fee structure changes in the 2019 Michigan no-fault auto insurance reform law that took effect on July 1, 2021. MPHI was chosen because of its expertise and depth of understanding of public health research.
This report summarizes the results from the first survey of brain injury service providers, distributed between September 29, 2021 and October 20, 2021. Two additional provider surveys are planned in 2022 to document this fluid situation.
The promises of auto insurance reform have failed to come to pass and there is now more third-party data supporting the conclusion that the 45% cut in reimbursements for catastrophic care has had devastating consequences for survivors and caregivers alike.
Long-term care and rehabilitation costs were once fully covered by Michigan’s Auto No-Fault insurance personal protection clause. Services like physical therapy and in-home care have faced dire outcomes now that funding has been slashed.
According to the new report:
1,548 no-fault patients have been discharged by their previous providers
3,049 Michigan jobs have been eliminated since the new law’s fee schedule went into effect in July 2021.
96 organizations can’t accept new patients with no-fault insurance funding, while 140 organizations reported having to significantly reduce services,
21 organizations have had to cease operating completely.
The organizations that participated in the survey represent more than 16,200 employees and more than 16,700 patients.
Looking forward, of 89 companies that said they were not affected by the law yet, more than half reported they will not be able to serve patients with auto insurance funding within 12 months. This is because most caregiver companies have been depleting their cash reserves at a rate that is not sustainable.
The data supports the obvious conclusion: no-fault reform has been nothing short of devastating for people seriously injured in automobile accidents. The fear and despair some of our state’s most vulnerable residents are experiencing as a result of the fee schedule cannot be what Governor Whitmer, Senate Leader Mike Shirkey, or House Speaker Jason Wentworth had in mind when they championed the 2019 reform legislation. However, the fact remains that without a fix from lawmakers, thousands of affected patients, families, providers, and frontline medical workers will sink further.
False Promises of Auto No-Fault Reform
The MPHI data comes on top of last month’s report from Poverty Solutions at the University of Michigan, which confirmed that state residents are still paying more for car insurance than anyone else in America and the racial and geographical disparities that reform was meant to mitigate continue to this day.
When the new auto insurance law was signed three years ago, state residents were promised that it would significantly lower premium costs for Michigan drivers without jeopardizing access to care for catastrophically injured survivors of car accidents.
However, the promises of auto insurance reform have not materialized. Michigan residents are still paying more for car insurance than anyone in the country, but what’s worse is that the reform measures meant to provide consumer cost relief have instead kicked off a catastrophic care crisis in our state.
Michael Harris & MPVA member and paralyzed veteran, Tony Jungblot, discuss current issues for catastrophic auto accident survivors at an MPVA, RIM Foundation & Miracle League event in October 2021.
The Michigan Paralyzed Veterans of America will not stand by and let the legislature deprive the critically injured of the care they need and deserve. We will continue to engage with all necessary stakeholders, both within our network of supporters and beyond. We owe it to all Michigan residents who will be seriously injured in automobile accidents to find meaningful solutions that maintain the integrity of the program. To sit back and do nothing is unacceptable!!
Michael Harris, Michigan Paralyzed Veterans of America President
Would you be surprised to learn that people with disabilities are met with barriers to medical treatment on a regular basis? How about that specifically women with disabilities sometimes receive substandard care because of these barriers, both physical and attitudinal, at a much higher rate than their non-disabled counterparts? Or, the fact that women with disabilities are more likely than men with disabilities to have unmet healthcare needs?
In fact, according to a BMC Women’s Health article, Barriers in Access to Healthcare for Women with Disabilities, researchers found that personal factors (such as personality, resources, and attitude) and healthcare system factors (such as providers attitudes, knowledge, structural, and political factors) could affect access to things like preventative health screenings or maternity care for women with physical disabilities in the United States. Furthermore, the CDC points out that 61% of U.S. women with disabilities aged 50-74 received a mammogram during the past 2 years, as opposed to 75% of women without disabilities.
Percentage of U.S. Adult Women 50-74 Years of Age Who Received a Mammogram During the Past 2 Years, By Disability Status – 2010 National Household Interview Survey(NHIS)*
The MPVA has been interested in this topic, especially as the needs for equitable treatment for women veterans with disabilities has received much needed attention in recent years. Recently the staff at the MPVA, which is proudly led by women, were sharing stories of the Shake Your Head variety. As the writer of this blog and of many other disability-related articles over the past decade, I have no problem being honest about my experience as a woman with a disability; so, during our staff discussion, I shared what I found to be humorous anecdotes about the inaccessibility I experienced at my first mammogram.
The MPVA Executive Director, Jaclyn Kochis, replied that she had heard similar stories from women in our membership. We all agreed that it was the right time to write an article sharing the different perspectives on this issue and how advocacy is still needed and can be successful.
We were honored to have Erica Coulston, as an associate member of the MPVA, speak with us on this topic. In between her many duties as President of Walk the Line Recovery Therapy, she shared her experiences with accessing healthcare as a woman with a C6/7 spinal cord injury.
Erica Coulston at Walk the Line Recovery Therapy in Southfield,MI
Erica C: “My first experience of getting a mammogram was not great. […] I have a history of breast cancer in my family, so this was kind of a baseline mammogram, so I wanted it to be very thorough and done properly. The technician who was helping me the first time was really unsure about how to position me and not get obstruction from my chair.
At the end of it, she was like, “Well, I did the best I could!”.
They ended up being images that were not clear because of the way that she had taken the image. My doctor said, “Well, I am sure it is fine!”.
I replied, “I don’t know if I am exactly comfortable with that. I’d like the best possible chance that everything is fine. If you missed the whole posterior view, then there is a whole section we are not seeing!”
I actually ended up having that hospital system refund my money for that mammogram. I went elsewhere and they were able to do a good job.
Often, it really does seem to boil down to, in my experience, the person administering the care. They are the ones operating the equipment, they are the ones interacting with you when they take you into the office. You know whatever it is, I really feel like there are two components to the problem: (a.) there are the actual, physical barriers—like does that physician’s office have height adjustable tables or machines? A lot of them do not have adaptive [equipment], and some of them only have one. If you do not specifically reserve that one, it may be in use when you come in for your appointment! So sometimes there is the physical aspect of it and then sometimes (b.) it is about the individual provider administering the care and their level of education and awareness.”
In preparation for this blog, we were able to interview a mammography technologist who has been in the field since 2007 and has been a certified in mammography since 2013. Her perspective is vital when trying to understand issues like these for women with disabilities seeking accessible care.
MPVAblogger: Have you ever had a patient with a mobility challenge or in a wheelchair that you had to assist? Can you tell us about that?
Mammography Tech: “I have had many patients with mobility challenges. If a patient is freely able to move around her upper body, etc. and the wheelchair can have the arm attachments taken off, I can usually perform the mammogram by myself without any issues. If the patient is less able to assist, then two or three of us will work together to get the best pictures possible. Sometimes, one or two of us will put on lead lined aprons to assist holding the patient in a certain way […] We do what we can to get the best pictures for the radiologist while also keeping the patient safe and as comfortable as possible. Sometimes, we will have the aid of a family member that the patient is with, as well. We are in communication with the patient the whole time to ensure the comfort level.”
MPVAblogger: Is there adaptable/adjustable equipment available in your office for patients with different abilities? If so, what is the procedure for use of this particular equipment?
Mammography Tech: “Our mammogram machines in the hospital […] all have the ability to come down pretty low, soperforming mammograms on patients sitting in a wheelchair is usually easilyobtained.”
This MPVAblogger’s experience lands somewhere in between Ms. Coulston’s frustrating account and the mammography technologist’s explanation of how this procedure has met with progress. Indeed, I did struggle with some lack of accessibility, similar to what Ms. Coulston shared, but I did find better communication from the staff that worked with me. The mammography tech shared that everyone on the staff where she is employed receives training “on best practices for working with patients with mobility issues, as far as using proper body mechanics and teamwork, etc. so that we do not injure ourselves. We also always get training on the equipment. We have also had training on interacting with patients with vision and/or hearing loss, as well as interpreters.”
The CDC writes that several factors often prevent women with disabilities (a diverse group, ranging from those with mobility, vision, hearing, or cognitive challenges to those with independent living limitations) from pursuing preventative medical screenings, like mammograms, or other checkups that could prevent disease, like oral care and Pap smears. For women with physical disabilities (WWPD), these barriers include many of the issues which Ms. Coulston experienced, like the absence of adaptive equipment or attitudinal barriers from providers and staff. This link shares four more stories and important perspectives on women with physical disabilities’ experience and their subsequent journeys with breast cancer.
Center for Disease Control (CDC) image promoting breast cancer screening for all.
Also, be sure to read about the CDC’s tips for women with disabilities (physical or otherwise) on how to prepare for a mammogram.
The mammography tech had some final words for potential patients, as well: “I would like people to know that we try our best, but we can’t always get a textbook perfect mammogram depending on patient ability and cooperation. [The most important] tip I have to offer is to tell women to speak up. If there is something we can do better to help them lean in better or hurt less, etc. don’t be afraid to say something.”
Of course, any woman with a disability can tell you that when they speak up, it is sometimes not taken seriously or addressed. That leads to another issue that many women with disabilities experience when communicating with medical professionals.
Erica C: “I actually went to the dermatologist just a few weeks ago with my husband and asked if they had any height adjustable tables, because I had not seen any as we passed rooms.
The nurse working with me replied, “Well, I am not sure. Let me check, I think we might have one.”
I immediately thought to myself, well, that is not helpful! That has been my experience repeatedly: either adaptive\adjustable equipment is unavailable, is limited, or the medical office/person administering the care is not knowledgeable about the equipment, my injury, or about disabilities in general.”
MPVAblogger: Have you found that you will schedule an appointment and give them all the information about your disability, specific needs, etc. but arrive on the day of the appointment to find that they are seemingly surprised at these things, almost as if you have never spoken to them?
Erica C: “Every time. Almost every Time. I have a C6/7 spinal cord injury. I mean, sometimes they are aware. I am not sure if it is the person taking the notes or the person reading the notes, or where in fact that communication is lost. I feel like if I made an appointment and somewhere has my medical information, that is information they should have. As a person with the disability, I do not feel like I should need to pre-announce my disability in order for them to be prepared. I feel like part of having an equitable society means that I should just be able to call and make an appointment; when I show up, it really should just be an attitude of “yes, of course Ms. Coulston, not a problem.””
MPVA blogger: Now that we have identified a potential problem of equity for women with disabilities when seeking certain medical care, how do we transition from seeing the problem to beginning to solve the problem?
Erica C: “A big part is knowing what you need and communicating that. It is important to find out if any accommodation or assistance is available at that specific provider’s location where you will have your appointment/procedure. That could be a wheelchair accessible bathroom, height adjustable tables or machinery, or physical assistance. Sometimes, it is a good idea to call that office the same day as your appointment to go over those things to ensure that you are speaking with someone who is going to be there when you arrive. You will be able to reiterate what you were told when you may be appointment and asked about certain accommodations. This will give you the chance to double check that they know you are, what you need, and that what you have been told is available for your appointment.
A woman in a wheelchair discusses something with medical staff during an appointment. It is wise to write down any information you are given.
One thing a woman can do is to voice an issue right at that moment with the manager or supervisor. Oftentimes what I have found is that they are unaware, have not thought of it, or it was overlooked. It is a good moment to educate them on what they can do to improve on what they need to solve the problem for your next visit. Also, there is a lot to be said about the power of social media. Sites like Next Door, and other local community and neighborhood forums can be impactful. For instance, I could put on my neighborhood page that I visited a dermatologist in the community, and they did not have height adjustable tables, so I would recommend that any women with disabilities consider choosing another provider.
My overall advice is that it is important to share information and to educate the provider— offer your help in making their practice more inclusive.
Of course, sometimes they will be unable or unwilling to make necessary changes. Being on the receiving end of that makes it challenging to stay unemotional and constructive.”
The needle of progress is moving, albeit slowly! As in most things that people with disabilities advocate for, the improvements have been good for all of society, but there is much work to be done. Providers and medical offices are more aware now than they have ever been in the direction which they need to be heading to provide quality accessible care to all. I have had good experiences where there was not a hitch in communication or accommodation. However, as many women with disabilities have experienced, successful appointments are still too few and far between.
In early 2021, the MPVA was awarded a grant from ADA Michigan, an affiliate of the Great Lakes ADA Center, to highlight how the pandemic has influenced the Americans With Disabilities Act (ADA). We chose to educate organizations, businesses, our members, and people with disabilities in Michigan on two important topics. The first webinar—which took place in late May 2021— dealt with what the ADA has to say about access rights that have affected people during this challenging time. The second webinar presentation is below—which took place in late August 2021—discussed what the ADA has to say about the increasingly important issue of digital accessibility, as well as assistive technology.
Highlights:ADA 101 & COVID-19
The Americans with Disabilities Act (ADA) purpose: eliminate discrimination & expand integration. The webinar highlighted the ADA’s Titles and how they impact us:
Title 1: Employment— details how all parts of the employment process (from application to on-the-job) are to be free from discrimination for an individual with a disability. Title I goes on to add provisions for “reasonable accommodations” for an employee with a disability to do their job effectively. The pandemic has reshaped the landscape of employment; some of which became beneficial to workers with disabilities as work from home policies were used. Adaptations, like work from home, worked well for some but the unemployment rate for the workforce with disabilities saw almost a double % increase as compared to employees without disabilities during the pandemic. It is important for our members to advocate for themselves in their work environments and understand how to advocate for reasonable adaptations.
Both Title II (Public Services) & Title III (Public Accommodations) rely on integration and mandates certain physical accessibility. Yet, Title III (Public Accommodations) calls for the importance of advocacy and our call on businesses to meet the requirements of providing equal access to goods and services during even during and after a pandemic.
Highlights: Paving the Way: Information Access
Digital Accessibility and Assistive Technologies are increasingly important topics. Digital accessibility is the process of making digital products accessible to everyone. It is about providing all users access to the same information, regardless of the impairments they may have. The Assistive Technology Act defines assistive technology as “any item, piece of equipment, or product system…that is used to increase, maintain, or improve functional capabilities of individuals with disabilities.”
Digital Accessibility, as supported by the ADA, is proving vital as the way of society, employment, commerce, and more becomes increasingly internet-based–especially because of and in the wake of the pandemic of 2020–it is vital that ALL are able to access the digital landscape.
The ADA considers Accessible Technology as part of “reasonable accommodations” under Title I: Employment. It also supports its broad technologies as an important part of a community-based and independent right.
The vote is the key to our democracy in the United States of America. This key can open doors to engage, no matter where we live, our background, or our differences in ability.
The Paralyzed Veterans of America is currently on a mission to encourage people with disabilities to know their rights and be ready to vote in this year’s election.
The Michigan Paralyzed Veterans of America (MPVA) has partnered with the Ann Arbor Center for Independent Living (AACIL) to help spread the word and share resources with people with disabilities. MPVA staff interviewed a representative from both the MPVA and AACIL in order to share some personal perspective on inaccessible voting and why it is important to make a plan so that everyone can share their voice.
We asked:
Paralyzed Veterans of America’s “Access the Vote” campaign is sharing news about inaccessible polling stations, mail-in voting options, and the importance of ensuring that ALL Americans can access their right to vote.
This information, which can be found here, shares that government research shows about half of polling places were inaccessible in 2016. There were a variety of barriers, like inaccessible sidewalks and parking lots, doorways that were not wide enough for a wheelchair, and long lines, among others. Have you ever encountered barriers to voting? How were you forced to adapt?
Joyce, an AACIL consumer shared:
[A barrier to voting for me] occurred about 20 years ago when I used a manual wheelchair for a period of time due to a biking accident. It was so frustrating, I simply didn’t vote in the next election because of inaccessibility.
It was hard for me to navigate stairs, so the biggest obstacle [during that time] was not being able to use my wheelchair while getting in doorways that were not accessible. I had to either wait to have someone hold the door for me or try to finagle holding my walker and a chair that I could sit in while trying to open the door for myself. Most of the time it didn’t work because the door was so heavy. There was also confusion as to whether or not a person with a disability could have someone accompany them to vote. At the time, people were just unsure as to their rights and responsibilities, so there wasn’t a lot of accommodation. It takes much longer than it would take the average person to vote […] now I share with other people how they can get access.
Show off your “I Voted” sticker with #AccesstheVote”
According to the Voters with Disabilities section of The Michigan Voter Information Center, voters may receive assistance from another person, provided that the person assisting the voter is not the voter’s employer, agent of that employer or an officer or agent of a union to which the voter belongs.
Westland, Michigan City Hall where MPVA filmed a promotional spot about best practices in accessible voting for the “Access the Vote” campaign.
Clark, MPVA member & Paralyzed Veteran shared:
Strangely, polling place accessibility has never been an issue for me. I am lucky that my polling place has always been accessible. I have been voting at the same place for 15 years [because I know] this one works.
Robin, MPVA staff member and wheelchair user shared:
I have always had poor dexterity, so was always on the lookout for the machine that would provide the accessible technology that I would need. I never saw this machine so I found ways to make it work, even though it was very difficult.
In the 2018 election, I finally saw this machine and was told by poll workers that they had never used this accessible voting machine, or the Direct-Recording Electronic machine (DRE). Considering that these machines were part of the Help America Vote Act (HAVA) of 2002, I was disappointed, to say the least!
Erica Coulston and Westland, MI City Clerk, Richard Leblanc, show off an Accessible Voting Terminal during a mock election set up for MPVA to film a promotion for the “Access the Vote” campaign.
Michigan’s Secretary of State website says at least one voting station inside a polling place should be adapted for an individual to vote while seated. In addition, all voters have access to a Voter Assist Terminal in all polling places, which helps a voter mark the ballot.
Are you concerned that the current pandemic, health risks, or other factors might present a barrier or extra challenge to your “Access to Vote” in this upcoming election?
Joyce, an AACIL consumer shared:
The United States Postal Service slowdown is a concern for people that are registered absentee voters [like many with disabilities] because they’re worried that their absentee ballot might not make it in on time. I am concerned about mailing my absentee ballot and will personally visit the local clerk’s office on or after the date that early voting starts in Michigan. That date is September 24.
Remember to call your local clerk’s office with any questions about requesting an absentee ballot, early voting, or anything related. A list of. Offices can be found here.
Have you been able to review your rights, polling access, individual needs, etc. to make a plan to vote in the upcoming election?
Joyce, an AACIL consumer shared:
I actually went to www.michigan.gov and looked up voting information, how to vote, and what to do if you needed assistance with voting. I encourage everyone to review their individual needs and make a plan to get to the polls.
More information can be found on www.michigan.gov or by calling the MPVA or AACIL, whose contact information is below.
Both Joyce and Clark shared that voting is our participation in the democracy of the United States of America. When your vote is cast, you as an American are speaking up about what you want for this country, not only in the individual that you vote for, but in the judicial appointments, leadership choices, and characteristics of our country’s role in the world.
Please be informed voter! Do some research and let your voice be heard this November!
The vote is the key to our democracy in the United States of America. This key can open doors to engage, no matter where we live, our background, or our differences in ability. 
MPVA Blog 