Force Behind Katie Beckett Waiver Dies

Julie Beckett

CEDAR RAPIDS, Iowa — More than 40 years ago, Julianne “Julie” Beckett fought to bring her daughter home.

The Cedar Rapids resident advocated to remove bureaucratic red tape that prevented her for caring for her daughter with a disability at home, eventually bringing her case to the halls of Congress and into the White House.

Policymakers and disability rights advocates say Beckett was instrumental in bringing fundamental changes to the federal Medicaid program that ultimately improved the lives of hundreds of thousands of families nationwide. She became a lifelong advocate for improving health care for children with disabilities and boosting support for families caring for loved ones with complex medical needs.

Beckett died in her Cedar Rapids home on May 13. She was 72.

Beckett’s daughter, Katie Beckett, was born in 1978 and contracted viral encephalitis — a serious infection that causes inflammation of the brain — when she was 6 months old. The infection resulted in a paralyzed diaphragm, significantly affecting her ability to breathe on her own. A tracheotomy tube was placed in her throat and she used a ventilator to help her breathe for the rest of her life.

Katie spent the next three and a half years in the hospital.

Medicaid took over coverage of Katie’s care after her parents’ insurance hit the $1 million benefit limit for coverage. At the time, the Medicaid program supported only hospital-based care, meaning Katie’s care would not be covered if she were discharged home.

Beckett began advocating for the ability to care for her daughter at home. In 1981, she contacted former U.S. Rep. Thomas Tauke, a Republican who at the time was representing Iowa’s 2nd Congressional District.

Katie’s hospital care was about $12,000 per month, but costs would drop to about $2,000 per month if her parents were allowed to care for her at home with the help of home health nurses.

“It was one of those situation where the rules of government didn’t meet the needs of the family,” Tauke told The Gazette recently.

He continued, “Julie was a very positive person. She obviously faced a lot of frustration with the situation, but she did not let that frustration deter her.”

Tauke brought the family’s story to Vice President George H.W. Bush, who brought the matter to President Ronald Reagan. In a news conference Nov. 10, 1981, Reagan cited Katie’s case as an example of “hidebound regulation.”

The Katie Beckett Waiver was created shortly after, establishing a program that allowed individuals with disabilities to use Medicaid dollars to get health care while living at home or in the community.

Beckett’s efforts resulted in a fundamental shift in the federal program. The Katie Beckett waiver became the foundation for Medicaid community-based supports nationwide, which has gone on to improve the quality of life of hundreds of thousands of children with complex medical needs nationwide.

“She didn’t know that she was going to tip history the way that it did,” said Delaine Petersen, a fellow advocate and friend of Beckett’s since the 1980s. “Her first and foremost goal was to get that child home, but she talked to the right people and people listened to her.”

Katie went home on Dec. 18, 1981. She went on to graduate from Mount Mercy University in 2001 and lived independently in Cedar Rapids.

“Julie worked so hard to help Katie be as successful as she possibly could be,” Petersen said.

Last month marked 10 years since Katie Beckett died. She was 34.

Throughout the 1980s and 1990s, Beckett continued to work with policymakers in Washington to develop programs to improve health care and remove barriers for children with complex needs. She was a driving force behind legislation like the Family Opportunity Act, and pushed federal leaders to embrace a family-centric model that better acknowledged family members’ roles in care.

In 1992, she founded Family Voices, a national nonprofit organization that brought together families of children with disabilities who were advocating for health care reform.

Among her many accomplishments, she helped the organization establish Family-to-Family Health Information Centers, federally funded resources that now exist in all states and in five territories.

Family Voices Executive Director Nora Wells said Beckett retired from the board of directors last year after nearly 30 years.

“She was a person that wanted to fix things,” Wells said. “If there was a problem she thought she could contribute to, she was on board. She thought bigger than her own family, and wanted to improve systems and make things better for people.”

In a statement on Beckett’s death, U.S. Sen. Chuck Grassley said the country “lost a passionate advocate for children and youth with special health care needs and disabilities.”

“While Julie would often say she was ‘Katie Beckett’s mom,’ we also knew her as a passionate advocate and servant leader,” Grassley wrote. “Julie’s lifelong pursuit to improve the lives of children and youth with special health care needs and disabilities made an impact for the better for her community, state and nation.”

The Iowa Department of Human Services also issued a statement noting the loss of “a pioneering advocate and champion for children.”

“Julie dedicated her life to championing the cause of children with complex medical needs. While we mourn her passing, we also celebrate the life of an Iowan whose work touched the lives of countless children and families across the United States. Julie will be deeply missed,” state officials said.

Beckett was working to improve the lives of Iowans and others across the country up until her final days. Petersen said they had planned a trip to Washington in June to meet with Grassley and other elected officials to discuss their concerns about current wait times for Medicaid members to receive services.

“She never, ever stopped being an advocate,” Petersen said. “You don’t have to be rich, loud or famous to make a difference. I think Julie would say, ‘I was just a mom and I did the right thing.'”

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Force Behind Katie Beckett Waiver Dies

How Do Conservatorships Work in Nashville

By Amy Willoughby Bryant

 

Many people have questioned whether a conservatorship can be established for a person without the person’s participation in the process or what to do when they suspect a loved one may be abused under an existing conservatorship. Fortunately, Nashville has an Office of Conservatorship Management to help protect individuals under conservatorship.

Understandably, some people may be confused by the terms conservatorship and guardianship, which can be used to describe authority over two different things. However, in the U.S., there is no uniform federally mandated definition for the two terms. States determine how they choose to use these terms, and who gets described as either a conservator or a guardian. In Tennessee, the terms used to describe a person who has been appointed by the Court to have authority for an adult person deemed to have a disability is called “conservator of the person,” “conservator of the property (or estate)” or “conservator of the person and property.” In Tennessee, the term “guardianship” is used to describe persons under the age of 18. Additionally, the law specifies who is eligible to serve as a conservator and who can file to establish one.

Currently, in order to establish a conservatorship, you must prove that an individual is disabled by a clear and convincing legal standard, which is usually accomplished through a sworn statement by a physician, psychologist, or senior psychological examiner. In other words, evidence must be presented to the Probate Court and verified by a medical professional.

The TN Court of Appeals case In re Conservatorship of Groves, lays the foundation for judges to use when determining an individual’s disability or incapacity. An individual with a “disability” for purposes of a conservatorship is one for whom autonomy has become either partially or totally impaired. In other words, the individual lacks the ability to absorb information, to understand its implications, to correctly perceive the environment, or to understand the relationship between his or her desires and actions. When a person’s autonomy becomes impaired, others step in to make choices on the person’s behalf, to promote the person’s best interests and to protect the person from harm. This process is called a “Conservatorship.”

With over 2,400 conservatorships, Davidson County has more conservatorships than any other county in Tennessee. Tennessee laws provide the framework for courts to determine how to provide oversight of conservatorship cases. This includes mandatory reporting requirements such as the Report of Physician and an annual status report. Other reporting requirements, determined on a case by case basis, may include the appointment of a guardian ad litem or attorney ad litem, an inventory, an annual accounting, and a bond.

The Office of Conservatorship Management (OCM) was created to provide additional oversight and protection for adult persons with a disability subject to a conservatorship. In addition to an assessment of health, safety, and welfare, the OCM also help to identify and refer conservators to resources available, based upon the needs and circumstances of each person. The OCM maintains a database of all conservators appointed by the Probate Courts of Davidson County for efficient management of the cases. The OCM also conducts a yearly financial review of each conservatorship of the property that require annual accountings. Upon completion of an investigation, the OCM may need to file a report to alert the Probate Court.

The OCM wants the citizens of Davidson County to know that conservators are expected to follow a code of ethics and we strive to preserve the dignity of people with disabilities. Please visit the OCM website for FAQ’s and a wealth of information on conservatorships: ocm.nashville.gov

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How Do Conservatorships Work in Nashville

Disability Doesn’t Need to Be Seen to Be Real

by LaVonne Roberts

 

On a cold evening in 2018, a truck rear-ended me while I was driving on a small country freeway in upstate New York. I tell people the impact was so hard, it shattered the car’s glass and broke not only the axle but my back. Overnight, diagnosed with herniated and bulging discs, I joined the largest minority in America—people with disabilities.

Since my accident, I’ve fought not to be angry or afraid. I’m not alone. About 36 million women in the U.S. have a disability. According to a survey conducted by the American College, women are most at risk financially and physically when it comes to disability. An invisible disability, as defined by the Invisible Disabilities Association, refers to “symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences, and mental health disorders, as well as hearing and vision impairments.”

Some people’s disabilities are apparent. Others, like me, whose impairment isn’t always apparent, feel invisible. When I’m not using a cane or bed-ridden, you might not recognize that I’m disabled. On a good day, I present able-bodied. Yet, excruciating back spasms often make it impossible for me to stand or walk for long stretches and sometimes they put me out of commission altogether. So, in a black-and-white world of disabled or not, what’s not seen is marginalized. Since my accident, I’ve had three MRIs, four epidurals, numerous steroid injections, and radiofrequency ablation. I’ve had physical therapy and chiropractic care because I want to avoid opioid drug therapy and back surgery for as long as possible.

Given that our current system distrusts people applying for disability, many disabled people with non-apparent disabilities feel penalized and stigmatized. There seems to be a chasm of misunderstanding when it comes to human discussions of pain. Over 100 million Americans grapple with chronic pain alone. Fibromyalgia is now understood to be the most common cause of chronic musculoskeletal pain. Sources estimate between 3 and 26 million Americans suffer from this hidden condition. People with non-evident medical challenges may be viewed as circumspect or ridiculed for antisocial behavior.

Women often have a hard time being heard, especially when they present illness complaints that defy objective modalities. Historically, women experiencing health challenges had their pain contested, minimized, and dismissed. A 2001 study from the University of Maryland explored why men are more likely than women to be given medication when they report pain to their doctors. That’s how pervasive stigma is—pushing women to internalize their suffering. Worse yet, a 2016 study published in the National Academy of Sciences Proceedings reported that Black Americans are systematically undertreated for pain relative to white Americans. Caroline Criado-Perez, author of Invisible Women: Exposing Data Bias in a World Designed for Men, says there’s a data gap when it comes to women. “The specific issues that affect Black women are lost in larger groups like ‘Black people.’ Part of the problem with the male default is that women are viewed as a minority; they think we’re all the same and just throw us into one big category.”

“It’s the invisible nature of an illness that people don’t understand,” Wayne Connell says. He founded the Invisible Disabilities Association (IDA) in 1996 after his wife was diagnosed with primary progressive multiple sclerosis and late-stage chronic Lyme disease. He was frustrated by the outside perception that she didn’t have a real disability.

“It’s startling,” Wayne said. “Our primary demographic at IDA—chronically ill women between the ages of 35 and 55—feel like orphans. Disregarded, isolated, and often abandoned by their partners, families, friends, and society at large—most of them who spent their adult lives raising children, excelling in their careers, and supporting their partners—are now all alone.”

What became surprising to me was that managing my pain was as hard as finding a doctor to develop a treatment plan that didn’t entail taking addictive opioids. I felt I wasn’t taken seriously when my back wasn’t spasming or when I didn’t need a cane. I kept thinking, What part of my describing what it feels like to have an ice pick stabbing my lower back didn’t register?

Social pressure to appear nondisabled permeates our culture. People with chronic illnesses are encouraged to “work through” their pain, so transparency remains elusive. One of the worst problems living with chronic pain is feeling like you’re living in a stranger’s unreliable and unpredictable body. You can’t plan ahead, which often results in isolation and resentment.

Women are viewed as a minority and are lumped together. So the specific issues that affect Black women are lost in larger groups like ‘Black people.’

Curious whether other people felt like me, I posted a question on Facebook: “Do you have a health condition that makes you feel invisible? Eighty comments popped up within the hour. Fibromyalgia, MS, autism, diabetes, and a plethora of mental illnesses populated my feed. Many commenters felt discriminated against by a society that minimizes their suffering. People who didn’t know each other began posting supportive comments on each other’s posts. A community was born.

Sawyer, a former college classmate suffering from chronic pain, wrote, “Over the years, I would go to doctors, but it was expensive, and they never believed me, so I would usually give up and suffer through. It wasn’t until a female doctor saw me that anyone took me seriously.”

After endless searching, I found a pain-management specialist who thoughtfully considers my questions and approaches my treatment as a partnership. Wanting to make sure I understood all my options, my doctor sent me to a top spine surgeon, who informed me that an invasive procedure’s risks might not be worth the potential benefits based on my case. What if surgery didn’t alleviate my pain, caused nerve damage, or worse, paralysis?

Today, 30 years after the landmark passage of the Americans with Disabilities Act and many other disability rights, many still ask: How much do we accommodate society by constraining ourselves, rather than asking society to see us? So many have it much worse than me, but this isn’t a competition—it’s about trying to live our best life possible.

In searching for supportive communities, I discovered that many were inspired to become advocates and activists, celebrating the very conditions they once feared. Carol Sveilich, M.A., frustrated by her own chronic illness’s challenges, wrote JUST FINE: Unmasking Concealed Chronic Illness and Pain because no instruction book existed to guide people living with easily concealed but often challenging illnesses and conditions. “Even after years of living with an invisible chronic disability, the person who looks healthy, even to themselves, may not want to be perceived as weak or sickly and then begins to doubt or belittle their own legitimate illness or pain,” she said.

How we see ourselves and how others perceive us is very closely linked. People with chronic health challenges often try to hide their symptoms from those around them, but they also hide the reality of their illness from themselves. Non-visible disabilities are a double-edged sword. I’ve been yelled at when sitting in a seat reserved for disabled people, and I’ve remained silent when meeting someone new.

In a TED Talk, author and clinical psychologist Andrew Solomon said that identity politics works on two fronts: “to give pride to people who have a given condition or characteristic and to cause the outside world to treat such people more gently and more kindly.” He added that “identity politics should expand our idea of what it is to be human.” I think most of us with hidden disabilities want to forge our pain into a narrative of triumph. Yet, the stigma of being “lesser than” is debilitating.

When asked what to do when your disability is challenged or misunderstood, Bruce Darling, the CEO of the Center for Disability Rights (CDR), advises the people he represents to find a way to manage their frustration when dealing with people and not to internalize their disability. Find someone who can support you and learn as much as you can about your disability,” he says. “Information not only allows you to give a better explanation to people who need to be educated, but it also gives you tools to develop your own accommodations that you’re entitled to by law.”

Perhaps, leading a more transparent life begins with finding community because inclusion leads to representation, which drives change. Handicapped by stigma and chronic illness, this group remains silent all too often, rather than asking for the help and support that they need and have a right to expect. Finding others suffering from similar conditions allows us to feel less alone and know that our conditions are valid.

In response to my Facebook post, Sawyer, one of my old college classmates, said, “When someone asks, what does it feel like to have pain like that?” It allows me control over a situation and body I often feel I have no control over. Describing it makes me feel seen like I’m making the invisible thing real for the people around me too.”

Stigma is harmful on many levels, including exacerbating symptoms, creating barriers to success in relationships and vocation, and impacting one’s identity and self-worth. It’s essential to change the way we talk and think about invisible disabilities. Patients, providers, and policymakers need to come together to examine biases.

I don’t know what my future holds—surgery, therapies, or a lifetime of pain. However, I’ve learned the best response to my impairment was educating myself so that I could find the right doctor. I’ve also come to understand that silence is what weakens us. After a Facebook friend wrote, “Thanks for creating a platform to speak on silent disabilities. My hearing loss is the ultimate silence,” I realized how important it is to have community.

For women who live with an impairment that makes them feel less than in a society that values nondisabled—the stakes are much higher. During his advocacy for CDR, Darling has observed that women are disproportionately impacted because men tend to be the policymakers.” Which, to me, sounds like a battle cry. Now it’s time to make some noise.

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Disability Doesn’t Need to Be Seen to Be Real

Quadriplegic man’s death from covid-19 spotlights questions of disability, race and family

A Texas hospital deemed further treatments for Michael Hickson to be futile — a decision his wife opposed but others signed off on

Michael Hickson, 46, surrounded by his children at the nursing home where he had lived. Hickson died June 11 of complications from covid-19. (Family photo)

By Ariana Eunjung Cha

Michael Hickson, a 46-year-old father of five from Texas, was sick with covid-19 when doctors reached a crossroads in his treatment. He had pneumonia in both lungs, a urinary tract infection and sepsis — a dangerous immune response leading to multi-system organ failure.

He needed a ventilator to help him continue breathing, but the hospital felt further intervention for the disabled man was futile. A doctor explained to the family that there was little hope Hickson would survive or regain “quality of life.”

Hickson’s sister, a physician, agreed. So did the agency acting as his legal guardian. But his wife, Melissa Hickson, was horrified. She worried doctors were placing less value on her husband’s life because he was a black man who was disabled. After going into cardiac arrest in 2017 and suffering complications, he had been left quadriplegic and brain-damaged.

The disagreements over Michael Hickson’s care — amplified by an audio recording, widely shared on social media, of his wife pleading with a doctor to continue treatment — provide a rare window into fraught end-of-life decisions that are being made across the country as the novel coronavirus continues its rampage. The case puts a spotlight on issues of race, disability and family, including the different ways individuals, even within the same family, assess what makes a life worth living.

In the days after Hickson’s June 11 death, the audio recording shared by his wife has created a furor among disability rights activists across the United States who have rallied around his wife. Their outrage has been echoed by Catholic organizations and antiabortion groups, which have argued that stopping treatment was tantamount to failing to recognize the inherent value of a human life.

DeVry Anderson, chief medical officer at St. David’s South Austin Medical Center, where Hickson was treated, described his case as a “very sad and complex situation.” He said the decision to withdraw care was not a matter of hospital capacity, Hickson’s disabilities or cognitive abilities, or his race.

“This was a man who was very, very ill,” Anderson said in a written statement.

“Some people want the public to believe that we took the position that Mr. Hickson’s life wasn’t worth being saved, and that is absolutely wrong,” he added. “It wasn’t medically possible to save him.”

Hickson’s sister, Renee Hickson, a fellow at George Washington University Hospital in the District, said doctors worked very hard to save her brother’s life, but his decline was precipitous. She does not believe any of their decisions were based on his disabilities or his race.

“There is only so much medically that we can do,” she said. “And they did that for all of those days, and there was nothing more to do.”

In the recording between Melissa Hickson and the doctor in charge of her husband’s case, she expresses confusion as to how the decision to stop treatment was made and tries to change his mind. Under Texas law, such recordings are allowed as long as one party consents.

“So as of right now, his quality of life — he doesn’t have much of one,” the doctor explains.

“What do you mean?” she asks. “Because he’s paralyzed with a brain injury, he doesn’t have quality of life?”

“Correct,” the doctor responds. The hospital declined an interview on behalf of the doctor, who is not identified in the recording.

The debate over Hickson’s care has hit a nerve as crisis protocols activated by health officials in some jurisdictions would allow hospitals to ration treatments in certain circumstances, as coronavirus cases surge. Disability rights activists, among others, express alarm that disadvantaged groups — the disabled, members of minority groups, the poor — might get lower priority.

“I’ve been stewing on this for a few days as I try to come up with the right words to explain to you how much of an underlying fear this scenario is for much of the disabled community,” tweeted Steven Spohn, a popular gamer who has spinal muscular atrophy. “We live our entire lives in fear that one day a doctor will decide we just aren’t worth it.”

The Department of Health and Human Services’ Office for Civil Rights responded to such concerns this spring by probing some of the plans, issuing guidance affirming the need for nondiscrimination protections and threatening action against violators.

Devan Stahl, a bioethics expert at Baylor University, said research shows that people with disabilities often have a higher assessment of their quality of life than others do, including some doctors. That can adversely affect their medical care, Stahl said, and this bias has long been a source of controversy when it comes to medical futility laws in some states, such as Texas, that allow hospitals to override a patient or family’s wishes if they feel a treatment is not of benefit.

Stahl added that Hickson’s doctors may have been correct that he would not benefit from additional life-sustaining interventions, but it is “unfortunate that the physician stressed the quality-of-life judgment the way he did.”

“These are difficult things to say, and I want to be empathetic to physicians making hard choices,” Stahl said. “But I don’t think many are trained well enough to have these really sensitive conversations.”

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Quadriplegic man’s death from covid-19 spotlights questions of disability, race and family

Doctors Starved Quadriplegic Coronavirus Patient to Death Because of His Disability

Michael Hickson, a 46-year-old COVID-19 patient, was starved and left without adequate treatment for his illnesses at St. David’s South Austin Medical Center. His wife, Melissa, says the hospital refused to treat his illnesses because of his disability.

Michael Hickson became quadriplegic due to receiving CPR after he went into sudden cardiac arrest while driving Melissa to work in May 2017. Melissa and their five children stayed by Michael’s side throughout his recovery. He landed back in the hospital in 2020 after contracting COVID-19 and pneumonia from a staff member at his nursing home.

Michael was conscious and alert but could not communicate verbally. He responded to jokes, shook his head, and puckered his lips on a FaceTime call when Melissa requested a kiss. Melissa asked if she could pray with her husband and their children, to which he nodded “yes.” But the doctor soon told Melissa her husband would be placed in hospice against her will. In a recorded conversation, the St. David’s doctor told Melissa her husband would not receive treatment because of his disability, despite her wishes.

St. David’s doctor: “So as of right now, his quality of life – he doesn’t have much of one.”
Melissa: “What do you mean? Because he’s paralyzed with a brain injury he doesn’t have quality of life?”
St. David’s doctor: “Correct.”

While Michael’s wife and another family member were litigating in court who would be Michael’s permanent guardian, a judge named an Austin-area organization called Family Eldercare as temporary guardian over Michael. Family Eldercare granted the doctor’s orders to not treat Michael and instead place him in hospice. Alarmingly, the doctor reiterated the scary reality that she had zero say in whether her husband lived or died. The doctor told Melissa, “but at this point, we are going to do what we feel is best for him along with the state and this is what we decided… this is the decision between the medical community and the state.”

Michael was left without food or treatment for six days despite Melissa’s will to save her husband. He passed away from the untreated illnesses on June 11, 2020.

Now, Melissa and her children grieve their beloved husband and dad. Melissa stated, “I’m struggling to understand how and why this could ever happen. I lost my best friend, my better half, the other half of my heart.” She continued:

I was stripped of my rights as a wife, and left helplessly watching my husband be executed. I now have no husband, a widow at 47. My children left with no father to celebrate Father’s Day. All taken away from us. I have no other words to express how I feel today except hurt, angry, and frustrated.

LifeNews Note: This originally appeared at Texas Right to Life.

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Doctors Starved Quadriplegic Coronavirus Patient to Death Because of His Disability

For people with disabilities, an extended stay in a rehab or nursing facility during a pandemic can be especially worrying

A comics journalism story on Covid-19

written by Kate Blaker with illustrations by Stacy Innerst

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About the project:

“I have had a career of being a strong advocate for other persons with disabilities, and I tell people that I will die in the streets protesting. (Sorely, I miss doing this for the present.) It was empowering to work on this issue of the nursing facility’s treatment of people who require that care — whether it be a short-term stay or a more involved term — where many people become not a person, but someone that the facility staff tends to recognize as no longer a contributor. It was easy for them (NFs) to hide what was going on for the last two months. The cost of living in the community is a third of a nursing facility cost; 70% of Pennsylvania’s population that passed away from the virus were in nursing facilities. Shame on the Governor and the Secretary of Health for not doing more to protect them.”
— Kate Blaker 

“I was honored to be asked to illustrate Kate Blaker’s story about her experiences in a nursing facility during the Coronavirus pandemic. Hers is one of the many voices that should be heard as society comes to terms with how we treat our most vulnerable members, especially in times of crisis.” — Stacy Innerst

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For people with disabilities, an extended stay in a rehab or nursing facility during a pandemic can be especially worrying

Locked into Poverty

Anna Landre

Impossible choices
forced on the disabled

by S.I. Rosenbaum

Presented by Microsoft News in partnership
with Spotlight on Poverty and Opportunity

Anna Landre grew up believing she had a future as bright as any one of her classmates. A mutant quirk of her genome makes her muscles weak, and she gets around in a wheelchair. But she assumed she’d find a way around any obstacle.

“My mom was always determined that my disability would not at all limit my future in any way shape or form,” Landre said. “I could do anything anyone else would do, and it would be harder but we’d figure it out.”

Neither Landre nor her mother realized that Landre’s freedom — to work, to save money, even to get married — would be restricted by something much more complex and implacable than genetics: a government welfare policy meant to help people like her but which too often presents the real possibility of personal and financial catastrophe.

“People don’t completely understand how backwards and unjust these regulations are,” Landre said. “Every time I talk to someone who isn’t in the disabled community they’d be like, ‘You’re kidding me. That can’t be how it is, that can’t be the law, there must be a way to fix it.’”

The financial trap of disabilities programs

Nearly 30 years after the Americans with Disabilities Act first outlawed workplace discrimination on the basis of disability, more disabled people live in poverty than when the law was passed. It’s a complex problem with many factors, but in some cases the very program intended to help disabled people becomes a devastating financial trap.

Medicaid was established in 1965 — not as a program for people with disabilities, but as a last-ditch healthcare program for the poor. It’s federally funded, but administration is largely left up to the discretion of states, and local policies differ widely.

In the 1970s Medicaid was linked to a new program: Supplemental Security Income (SSI), a federally-funded income assistance program for disabled people. Back then there was no law against private health insurance companies turning away disabled customers, and so Medicaid became the default insurance option not just for the poor but also for most disabled people. And in the 1980s, as the nation moved to deinstitutionalize disabled people, Medicaid added home-care benefits that would allow people with disabilities to direct their own care in their own homes.

Today in most states, the same application is used to apply for SSI and Medicaid. And both programs come with austere income and asset limits. To qualify for SSI, an individual can’t earn more than $771 in a month — less than $10,000 a year. And they can’t have more than $2,000 in assets at any time, a number which counts most personal valuables as well as cash in the bank.

Medicaid income and asset limits vary from state to state. Many states use the same limits as SSI, though others allow for as much as $1,012 a month in income for an individual. Two states, Arkansas and North Carolina, allow up to $7,560 in assets, and Arizona has no asset limit. On the other hand, some states — such as Connecticut — have asset limits as low as $1,200.

No alternatives

The problem is that Landre and roughly 3 million other disabled Americans have no alternative. While the Affordable Care Act has made it illegal for private insurance companies to refuse her, Medicaid is still the only insurance program in America which covers personal care assistance — the benefit Landre needs to survive from day to day.

“My assistants help me with getting out of bed, getting dressed, showering, household chores like laundry, cooking, and cleaning; nebulizer treatments for my breathing; going to the bathroom during the day,” she said. At night, an assistant helps her turn over in bed.

Losing personal care “can literally result in deaths for people with disabilities,” said Rebecca Cokley, director of the Disability Justice Initiative at the Center for American Progress.

Without Medicaid, disabled people “could go from having their basic needs met and living in the community … to being forced into nursing homes, or even dying as a result of lack of care,” Cokley said.

So people who rely on home care have no choice but to stay poor. “This isn’t an inconvenience, it’s a death sentence,” Cokley said. “It forces families and individuals to make choices they shouldn’t have to make.”

Landre didn’t realize any of this when she first started using personal care assistants in high school. By the time she went off to college at Georgetown in 2017, Medicaid was providing her 112 hours of assistance a week — enough to live on own in the dorm.

She had to learn to handle timesheets, payroll and scheduling for a constantly rotating staff, but it was worth the freedom and security it gave her. She assumed that was how she’d manage her adult life.

Anna Landre, a Georgetown University junior year student, has been advocating to change Medicaid financial requirements after being told she wouldn't be able to work an internship because she would make too much money to qualify. Photography by John Shinkle for Freedman Consulting.

The penalty of income

Then, at the end of her freshman year, Landre landed a paid internship for the summer. She’d be making $14 an hour. When she mentioned the news to a social worker, she expected congratulations. Instead, Landre recalled, “She was like, ‘Oh, you’re not going to be eligible for Medicaid anymore — you’re making too much money.’”

Landre felt blindsided. Suddenly she was facing the choice of keeping the services that would make it possible for her work, or actually working. She couldn’t do both.

Medicaid policies seemed to have been written by people who could not imagine someone like Landre. “It’s this assumption that if you’re so disabled, you’re not going to be able to work,” she said. “And if you’re able to work, you must not be that disabled.”

The problem is that Medicaid and SSI aren’t designed to raise disabled people to equity with nondisabled people. Instead, they can border on the punitive, as MIT political science professor Andrea Louise Campbell noted in her 2014 book Trapped in America’s Safety Net: One Family’s Struggle.

“American social assistance programs are stingy and difficult to access because of an age-old suspicion of the poor,” she wrote. “They are so miserly as to be impossible to live on.” And while they are, in Campbell’s words, “designed to be less attractive than work,” the irony is that they ultimately penalize disabled people for working.

Facing down this dilemma, Landre went to the New Jersey Medicaid office looking for options that would allow her to take the internship and keep her benefits. Officials didn’t offer her any. Frustrated, she started calling reporters and connected with Jay Carino, a writer at her hometown newspaper Asbury Park Press.

But the same day Carino’s story ran, Landre received an email from Medicaid telling her they were arbitrarily cutting her coverage from 16 hours of assistance a day to just 10. This wasn’t a policy issue, and had nothing to do with her finances — it was just a random decision made by someone who had never met her.

Now Landre was fighting on two fronts: to be allowed to keep her benefits while working as an intern, and to appeal a vast and arbitrary reduction in care.

“There’s no preparation for this,” she said. “No one expects a 20-year-old to manage a staff of eight people and be fighting an entire state bureaucracy at every turn.”

A public forum

Much of Landre’s fight took place in public. She knew the optics were good: “People got really angry, because it’s that narrative of ‘Look, it’s a disabled person trying really hard to work and have a productive lifestyle and the horrible government won’t let her.’”

She reached out to her state legislators. She blitzed social media. She talked to reporters, and then more reporters.

As the story spread, she began to get emails from disabled people across the country. She heard from people like Daniel Florio, who has a Harvard MBA but can’t get a job in his home state of New Jersey without losing his benefits. Or Josh Basile, a Maryland malpractice lawyer with a spinal cord injury who was asked to choose between his job and his nursing care.

She even heard from people who wanted to marry but couldn’t, because their partner’s income would disqualify them from benefits.

All of them had scoured the conflicting Medicaid policies for solutions; none of them had found one.
In the end, Landre went off to her internship while appealing the cut in hours.

Eventually, the hours were reinstated — after a drawn-out court process, and only with relentless pressure from the media and legislators. Landre waited for a call ending her services because of the money she’d earned at her internship, but it never came. She thinks New Jersey Medicaid just decided they didn’t want more bad press.

It was a victory of sorts. But when she asked that state officials make changes to protect other disabled people from going through the same thing, they never followed up.

“Nothing changed at all,” she said.

Spotlight on Solutions

Corporations and businesses are increasingly focused on hiring and retaining those with disabilities, providing health care benefits and salaries worth considering.

The Disability Equality Index sought to identify companies who were committed to behaviors like hiring goals, leadership, benefits, accessibility, support services and community engagement supporting equity for those with disabilities. Over 100 companies were awarded top scores including Walmart, Sprint, Verizon, Starbucks, Delta Airlines, and others.

The Valuable 500 is a global movement, putting disability on the business leadership agenda. Companies involved with this movement ensure that disability is on their board agendas and they commit to a public tangible action each year.

While SS and Medicare policies do nothing to elevate the disabled to the nondisabled economic status, there are a few federal programs intended to ease the burden of relying on Medicaid and SSI:

• ABLE Accounts: Created in 2014, these special accounts shield savings up to $100,000 from the SSI asset cap.

• Section 1619(b): A federal work-incentive program established in 1987 that allows people with disabilities to continue receiving Medicaid benefits while working if their out-of-pocket care costs would exceed their income. The catch: they still can’t save more than the SSI asset limit.

• Medicaid Buy-In: An optional program adopted by some states that allows some working people with disabilities to pay a premium to “buy in” on Medicaid benefits. Depending on the state, the program cuts off at a certain income level — for example, in New York an individual can have a gross income of up to $63,492 and keep Medicaid. But for a professional, that’s still pretty low: a raise or two could mean losing everything.

Full Article & Source:
Locked into Poverty

Far from "helpless": How the Disability Rights Movement saved my life

Protestors from ADAPT, a grass-roots community that organizes disability rights activists to engage in nonviolent direct action, block the intersection of 15th Street and Pennsylvania Avenue NW near the White House for nearly four hours September 20, 2010 in Washington, DC. (Chip Somodevilla/Getty Images)

In the summer of 1971 I made a phone call that saved my life.

I had decided to reach out to some disabled friends, after a long period of lethargy and hopelessness, which followed the suicide of my best friend, Audrey. I had met Audrey at the Hospital for Special Surgery, when we were both thirteen, right after my father succeeded in bringing me and my mother from our native Sicily to the U.S. His hope was that here I would get the medical care I needed, since I had contracted polio as a baby.

Though Audrey’s disability — spina bifida — was different than mine, the effects of our disabilities on our bodies were much the same. So were the negative messages that came from all around us. Our lives were seen as tragedies, our futures held no promise of happiness, because of our disabilities, we weren’t considered “real” women, we would never know love… “Such pretty girls, what a shame,” they said, and Audrey swallowed their lies — together with sixty Seconals.

At the time, though, I didn’t know those were lies. For quite a while I thought she had done the right thing.

I must have been looking for a lifeline, without even realizing it, when I reached out to disabled friends I knew from various hospitals. Most of our conversations were brief; I made no effort to see any of them. But the call to my old friend Susie — who, like me, had had polio — was different. She told me about a meeting of disabled people she was planning to attend. I had never even heard of disabled people having meetings. Susie said the name of the organization holding the meeting was PRIDE, which was an acronym—it stood for “People for the Rehabilitation and the Independence of the Disabled through Education.” A mouthful. I liked the acronym better than the full name. What was this meeting about? Getting special parking permits, Susie told me, so we could park where other people couldn't, like in "No Parking Anytime" zones.

“Far out,” I said.

I remembered Audrey parking her bright blue Mustang anywhere she pleased, even in bus stops. Her wealthy parents didn’t mind paying the tickets she always got. My immigrant, hard-working parents could not have afforded to pay for parking tickets. So I tried very hard not to get any. My car was a second-hand Mercury of an unappealing brownish color, but I felt lucky to be among the privileged—whose level of disability and of resources allowed us the freedom to get out on our own. Public transportation was totally inaccessible. So, many were stuck at home—or, much worse, in institutions.

Lately, I hadn't been getting out much. Most days, I couldn’t even manage to drag myself out of bed, to my parents’ profound concern. On those occasions, when I ventured out to keep an appointment with the psychologist I saw reluctantly to appease my parents, or to the library to return an overdue book, I often got so disgusted waiting and going around the block trying to find a parking spot, I just went back home and back to bed.

I had managed to graduate from St. John’s University, shortly after Audrey’s suicide; and I was supposedly looking for a job. But I had no expectations of finding one. No one wanted to hire a girl who wobbled at a snail's pace with ugly long leg braces and crutches. “Come back when you can walk better,” I’d been told more than once.

It was hard to silence Audrey’s voice in my head saying “why even try, what’s the use.” But at times, I would get dressed in loose pants that hid my braces, wash and brush the tangles out of my long wavy hair, and drive to a job interview, scheduled for me by the college placement office. I knew I had to give myself an extra hour to find parking.

"I’d like a special permit," I now said to Susie. "And I’d love to see you."

"There’ll be other people you know, and Judy Heumann will be there."

Judy Heumann. The name rang a somewhat rusted bell. Susie reminded me that she was the young woman who sued the Board of Education when she was denied her license to teach because she used a wheelchair. She had won her case, Susie said, or settled or something, and was teaching now.

After I hung up, I looked at the newspaper clipping, which I had scotch-taped to the wall above my desk over a year ago. It was starting to turn yellow. The headline read: “You can Be President, not Teacher, with Polio.” The reference was to FDR, the president who had contracted polio. I stood, leaning my hip on the desk, and read through the entire article. I remembered how excited I had been when I’d called Audrey to tell her about this young woman who, instead of going home and crying her eyes out like we would have done, believed in her right to pursue her chosen career, and decided to fight back. Audrey had not responded at all. A few weeks later she was gone.

* * *

The meeting was in the living room of somebody's house. I recognized a few faces when I walked in with my braces and crutches. There weren't many people there, I counted eleven; someone else might have come after me. Six were in wheelchairs. I was glad I wasn’t; there wouldn’t have been room for another one. I sat in a high-back dining chair. There were newspapers piled up on the table. Rather than listening to what was being said, I kept looking around me—dark heavy furniture, some pushed against the walls. I stared at a pretty girl with blond hair sitting across from me in a wheelchair. I wondered if Audrey would have attended this meeting. Why couldn't I stop thinking about Audrey? How could I make my mind stop wandering and start paying attention?

I recognized Judy Heumann from her picture in the paper. But I had expected her to look more formidable, like someone capable of taking on the Board of Ed. Instead, she was cute, bright-eyed, and small. Maybe she looked small because her wheelchair was big. She wore a fashionable peasant style dress with short puffy sleeves.

When the meeting was over, I decided to introduce myself to Judy.

"It's a pleasure to meet you!" She gave me a sparkling smile and held out her hand.

Standing with my braced legs far apart for maximum balance, I slid the crutch out from under my right arm, and grabbed it with my left hand, tightening the muscles of my left forearm to keep the other crutch secure under it. I was able to bend down just enough to give Judy's hand a hearty shake.

I wanted to ask: How did you muster the strength to fight back? How did you arrive at the realization that being denied a license to teach was an act of discrimination, when the rest of us accepted such verdicts as the inevitable outcome of being disabled?

But I didn't ask those questions. We talked about what had been discussed. The Department of Motor Vehicles only agreed to issue us permits to park in front of our schools or places of work. They didn't think we should have any desire for frivolous activities such as going to a movie or a restaurant. I told Judy I agreed with the people who argued in favor of holding a demonstration in front of the DMV.

“Then you should come to meetings of my organization. It’s called ‘Disabled In Action.’ We hold demos and do civil disobedience.”

“Okay!” I exclaimed.

I started going to meetings, both of PRIDE and of Disabled In Action. I liked DIA more than I liked PRIDE, which in spite of the great acronym seemed a bit tame. DIA meetings were often held in Brooklyn. But it was worth the drive. I listened in awe to Judy.

"It is not our disability that handicaps us, it is society that handicaps us. . . Disability only becomes a tragedy for us when society fails to provide the things we need to lead our lives. It’s a tragedy when we’re discriminated against, kept out, treated as inferior.” She spoke the most amazing truths in such a sweet-sounding, girlish voice. She was a true revolutionary, our Angela Davis.

I thought my parents would be happy I was going out, rather than staying in bed all day. But I could tell they weren't so enthusiastic about my interest in disability activism. Once, back from a meeting, when I started talking about Judy and some other disabled people I admired, my father interrupted me.

"I wish you'd make normal friends.”

His words felt like knives stabbing me. I went into my room slamming the door, threw myself on the bed and cried.

My mother knocked after a few minutes. I didn't say "come in" but she did anyway. She sat on the bed and stroked my shoulders. "Your father didn't mean it."

"Didn't mean what?"

"He didn't mean to imply you weren't normal."

I sat up in bed and yelled: "I don't care! Maybe I don't even want to be normal! Maybe I don't even like normal people!"

She put her arm around me and I shrunk away from her. "It's just that having handicapped friends makes it harder for you to get over... to forget..."

I turned around to look her in the eyes. "Forget what? Forget who?"

She said her name in a whisper. "Audrey."

I yelled even louder: "I don't want to forget about Audrey, I never want to forget about Audrey!"

* * *

My parents were really tickled though, when my picture, taken at the demonstration in front of the DMV, was in The Daily News. My father must have gone around to every local store and newsstand. Every relative, every friend, in the US and in Italy, got a newspaper clipping. In the picture I was standing with my crutches holding a sign I’d made the night before the demo.

I was very proud of my sign. Some had made fancy ones, using boards and markers of different colors, drawing pictures of cars. Mine was simple: block letters in black magic marker on white board. It read:

IF YOU THINK WE'RE HELPLESS,
WE'VE GOT NEWS FOR YOU, MAN!
WE CAN FIGHT FOR OUR RIGHTS,
JUST AS WELL AS YOU CAN!

Susie couldn't stop laughing. She thought "man!" was funny. "Sooooo hippie," she kept murmuring, shaking her head.

But, hey, it rhymed. Others criticized my sign for being too general.

"This way I can re-use it," I conceded, "I'm lazy. I’d rather not have to make a new sign every time we have a demonstration."

But really, I wanted my sign to do more than demand a parking permit. I wanted those few words on that twenty-four square inch board to present, in a nutshell, what I saw as the big picture, our common struggle.

It was amazing to discover how similar our experiences were, once we started comparing notes. Until then, we had all considered our disabilities to be the problem. We believed we were supposed to “cope” as best we could. As we talked, we realized the disability itself was not that big of a deal for us. We had all learned to accept our physical limitations. What made life difficult was not the disability but the lack of services and supports, the lack of accessibility, the unfair and stereotypical ways in which we were treated, the pity doled out for us all our lives. Often, after a meeting, I wrote my thoughts down in a notebook. It’s not my fault that I’m disabled, yet I’ve been made to feel that it is, I wrote. My polio never made me unhappy, people made me unhappy. Ever since I was a little girl, people have always made me feel I was no good because I was disabled. From the Sicilian women and the nuns to the doctors who couldn’t fix me, to my fellow students and prospective employers… and even my own parents. As I wrote, my tears fell and stained the pages—tears of anger, of relief, and of new hope.

I was thunderstruck by the realization that as a disabled person I had "rights." This was a time of movements. I’d been hearing and talking and getting excited about "rights," and never before had it dawned on me that the same arguments could apply to me, to us, disabled people. There were rights for black people, rights for women, rights for Native Americans, for immigrants, for workers, for gays, there were even animal rights... But I’d never before heard anybody talking about rights for disabled people. They talked about benefits and cures and charity for us, not rights.

I got so fired up at the mere notion of disabled people "fighting" — instead of asking pretty please, instead of begging, and of sitting around wishing and hoping and praying to be cured. The news that we weren't "helpless," as everyone seemed to believe and as everyone wanted us to believe, was one that I wanted to shout to the four corners of the earth. The best I could do for the time being was print it in big black letters on a white board.

I got to reuse my sign a few times. When we went on a march to the UN, I rolled in my wheelchair — I could not have walked so far on my crutches — with the sign hanging around my neck, hitting my chin or covering my face when I went over a bump or a pothole. And I used it in October, when we blocked Madison Avenue to protest Nixon’s veto of the Rehab Act. About 80 people took part in that demo. We were even joined by some disabled Vietnam vets. Judy and a few others got summonses from the police. My heart was beating fast, but I wasn’t nervous, with the police all around us, just excited.

At other demos I had attended — against the war in Vietnam, or for women’s reproductive rights — I was the only disabled person, except when Audrey went with me when she was alive, and had to endure the stares and the pats on the head, and the warnings to be careful, and the “so sorry!” and “thank you for being inspirational!” all reminding me that fighting for a common cause didn’t make my presence any less of an oddity. At “our” demos, among so many disabled like me, I felt right, I felt strong, and powerful. Here we were all together as one, finally fighting back.

I loved using the pronouns "we" and "us" in contrast with the pronouns "they" and "them." “They treat us as if we’re sick, as if we can’t do anything.” “We won’t take any more of their bullshit.”

"But who are they? Who are these bad guys?" my father asked. He’d never had any trouble naming bad guys — the fascists, the greedy idle rich, the mafiosi, the corrupt politicians... It bothered him that my use of the pronoun seemed to include everyone who wasn’t like me and my friends — who wasn’t disabled.

"What about your mother and me? Do you think we're bad guys?"

Judy liked to refer to “us” as a minority. Like members of other minorities, we were treated as inferior, kept in the margins of society, denied equal rights and opportunities. However, in most minorities the children resembled the parents. Being disabled, I was different than my own parents. That realization made me want to cry.

"Of course you’re not bad guys, you’re my parents!"

I wished I could explain my feelings to my father. But how could I when I didn’t fully understand them myself. What I knew for sure was that it felt good when "we" succeeded and made change happen. And it felt good to belong, to be part of something… I wasn't sure what that something was, but I knew I wanted to be part of it.


Full Article & Source:
Far from "helpless": How the Disability Rights Movement saved my life