“Do you support Medicare For All? Why not? Don’t you believe everyone has a right to health care?”
Your coworker says:
“I think everyone should have healthcare, but how do we pay for it? And even if we can pay for it, how could we ever hope to pass such a huge and controversial plan?”
Meanwhile, your aunt wants to know:
“Do you really want the government in charge of your healthcare? And Is it fair that hardworking, responsible people should have to pay the medical bills for people who don’t even work? I don’t mean you of course …”
These are stereotypes, but nowadays they kind of ring true. They’re the sentiments that every disabled person even slightly engaged in the healthcare debate hears from every corner. That, and accusations of being a shill for “the other side” if you dare to ask critical questions and raise specific concerns as a disabled person. There’s no escape from it either, especially online. Now that 2020 campaigns are underway, you can’t plant a crutch or turn a wheelchair without running into someone’s passionate beliefs about healthcare. And they want you to believe, too. They’ll even point to your disability as a reason why you should support their position on healthcare.
The fact is that people with disabilities do have unique and important priorities that aren’t always addressed in healthcare plans. For people with disabilities, they matter more than ideology, poll-tested rhetoric, or political affiliations. This is the substance of the healthcare debate for the disability community.
Under a law that took effect today, the state of Arizona can charge the city Flagstaff for added costs to state contracts that will occur as a result of the city’s newly-implemented minimum wage increase. Many care providers cannot shoulder this added cost, however, as they already struggle to pay their employees due to insufficient state funding for their services. Unable to pay more than minimum wage, many companies cannot keep a steady workforce of caregivers. And with fewer providers, there will be fewer opportunities for people with disabilities.
Click here to read this Cronkite News article online.
Valentina Gloria, a 19-year-old woman who has been diagnosed with several mental illnesses, has been detained at Maricopa County’s Lower Buckeye Jail for nearly six months, since February of this year. Now Vangelina Gloria, Valentina’s mother, is pleading for her teen daughter’s release.
Some say Valentina’s case exemplifies how our legal system criminalizes mental illness. Her predicament also highlights the ways in which our criminal justice system fails at providing quality mental healthcare to those who need it.
With support from Puente Arizona, a Phoenix-based migrant justice organization, Vangelina wrote a letter to Maricopa County Attorney Bill Montgomery earlier this week, requesting that he drop the charges against Valentina and release her from police custody. According to azcentral.com and court documents, Valentina has been diagnosed with bipolar disorder, paranoia, depression, schizoaffective disorder and post-traumatic stress disorder. Vangelina believes that being in jail is exacerbating her daughter’s mental health condition.
How did Valentina end up in jail?
In December 2018, [Valentina] Gloria was being treated in a behavioral health unit at St. Luke’s Hospital, where she was accused and arrested for spitting and punching two different nurses; she was then charged with two counts of aggravated assault. Then in May, a county judge ruled Valentina was incompetent to face the charges in court and ordered her to stay in jail to receive treatment through the County’s Restoration to Competency Program. A previous Arizona Republic analysis of Maricopa County’s Restoration to Competency Program expressed concerns about the program’s inefficiency and questioned the quality of the jailhouse mental healthcare provided by the county.
Click here to read an azcentral.com article recounting Vangelina’s efforts to secure Valentina’s release.
In an article in the June 2019 issue of Phoenix Magazine, NCDJ board member Amy Silverman draws attention to the fact that there aren’t enough resources and support services available in Arizona for families who care at home for loved ones with disabilities. “According to the Arizona Council on Developmental Disabilities, there are 130,000 or so people in that category in Arizona, and almost 90 percent live at home,” Silverman says.
In addition to highlighting the need for better home-care services in the state, the Phoenix Magazine article also highlights Arizona’s failure to investigate the state’s Division of Developmental Disabilities, despite there being scores of formal complaints and well-documented concerns regarding the poor quality of the DDD’s in-home nursing services.
Click here to read Amy Silverman’s Phoenix Magazine article online.
Carrie Ann Lucas, a disability rights activist, died in late February because her health insurer declined to pay for her necessary medication.
When a cold turned into a lung infection in January 2018, Lucas, who was ventilator-dependent, needed antibiotics, but her insurer balked at the cost of the most effective medication available, setting off a cascade of events that left her in ill health for much of 2018.
While a New York Times obituary praised Carrie Ann Lucas for her many achievements as an advocate and activist, the obit did not mention the real cause of her death.
Arizona Gov. Doug Ducey is ordering three state agencies to do a better job protecting Arizona’s most vulnerable residents. The executive order he issued on Wednesday comes one week after the Arizona Developmental Disabilities Planning Council issued a report calling for the state to implement stronger protections for its residents with disabilities.
Some say the governor’s executive order is a good “first step,” but more work is needed to create policies that adequately protect Arizonans with disabilities who reside in long-term care facilities.
One in four Americans is disabled, according to a U.S. Centers for Disease Control and Prevention survey released Thursday “At some point in their lives, most people will either have a disability or know someone who has a one,” Coleen Boyle, director of CDC’s National Center on Birth Defects and Developmental Disabilities, said in a written statement. Read Binghui Huang’s story here.
Former U.S. Treasury economist Ernie Tedeschi wrote a guest column for the New York Times analyzing recent labor force employment data. Tedeschi sourced his information from the Census Bureau’s Current Population Survey and discovered promising signs that people with disabilities are returning to the labor force. Check out Tedeschi’s full report in NYT and readers’ comments about why the trend is occurring.
Living with a disability can have a serious impact on a person’s wellbeing, especially when that disability comes with chronic pain. The challenges of living with daily pain contribute to substance abuse rates that are two to four times higher in the disability community than the general population. While alcohol abuse and illicit drug use contribute to the high rate of substance abuse among people with disabilities, many develop problems related to prescribed narcotic medications.
According to a 2014 report published on Science Daily, more than 40 percent of all Social Security Disability Insurance recipients take opioid pain relievers, and more than 20 percent are chronic users of opioids. These numbers are concerning for a number of reasons. Not only does chronic use of opioids carry a heightened risk of addiction, but researchers are beginning to call into question whether the long-term use of opioids is actually appropriate or effective in the treatment of non-cancer chronic pain.
While some patients have success using long-term opioid therapy to manage pain associated with their disability, others find that as their tolerance to the drugs increases, they require ever-higher doses to reap the same benefit. While tolerance and dependence don’t equate to addiction, they do increase risk. And as the IASP Pain Research Forum points out, higher doses are associated with an increased risk of overdose and death. Even if overdose never enters the picture, death can still result from side effects of opioid use, such as the exacerbation of sleep-disordered breathing leading to cardiovascular death.
Nonetheless, opioids remain as one of the leading treatments for pain, and many people with disabilities rely on opioid pain relievers to keep their daily symptoms manageable. For chronic users, the focus then turns to responsible use to reduce the risk of addiction.
Responsible opioid use begins with doctors: Rather than freely prescribing opioid pain relievers or shunning them outright, doctors must take a balanced approach to these risk-laden drugs. In practical terms, that means not using opioids as a first line of defense against pain, instead directing patients toward alternative remedies like physical therapy and cognitive behavioral therapy, as well as non-opioid pharmacologic therapies, before turning to opioids. When opioids are the appropriate choice, the goal should be to maintain the lowest-effective dose rather than consistently increasing dosages. Physicians must also apply risk assessment tools, screen for contraindicated medications, and carefully monitor patients’ health status after initiating opioid therapy.
Patients, too, have a role to play in managing the risk of long-term opioid use. People who use opioids to treat disability-related pain must be careful to always follow their doctor’s instructions. Steps should be taken to prevent double-dosing and alcohol and illicit drugs should be abstained from while under opioid therapy. Physicians should be informed of all drugs a patient uses, including over-the-counter medications. Opioids should be locked up when not in use and unused medication discarded to prevent unauthorized access by someone other than the prescription holder. Finally, patients should employ nonpharmacologic self-management strategies, such as a healthy diet, adequate sleep, physical activity, and mental health management to improve their overall wellbeing.
While opioids are central to the discussion of addiction and disability, they aren’t the only substance putting the health of people with disabilities at risk. While self-medication with alcohol and illicit drugs can provide temporary relief from the physical and mental pains of disability, it’s a coping mechanism fraught with risks. Drugs and alcohol can interact dangerously with prescribed medications, contribute to poor overall health, and reduce a person’s ability to follow treatment and self-management regimens. Long-term use also contributes to the development of secondary conditions that worsen quality of life, such as depression, organ damage, gastrointestinal problems, and infectious diseases, among others.
Living with a disability is challenging enough without adding a substance abuse disorder into the mix. While advising people with disabilities to avoid alcohol and illicit drugs is relatively straightforward, addiction prevention is complicated when addictive substances are part of a prescribed treatment program. Adequate assessment, monitoring, and cooperation between doctors and patients is essential for preventing opioid use disorders in people with disabilities.
Mary Wilson is the abilities editor for Ability Wellness. She can be reached through AbleWell,org.
The Association of American Medical Colleges (AAMC) published a report today outlining common barriers to medical education faced by med school students with disabilities. The research on this topic was prompted by the AAMC‘s desire to promote diversity among its student, faculty and professional membership, and facilitate the standardization of accommodations. The report suggests that, although more medical school students are self-identifying as having disabilities, a culture of competition still promotes stigma around disability. Philadelphia public radio’s (WHYY) Elana Gordon wrote a short article summarizing the AAMC report and the responses it prompted from disability rights advocates.