5 Things Disabled People are Looking for in Healthcare Plans as the 2020 Elections Approach

A stethoscope with text that reads 2020 in the middle, surrounded by vital sign lines
Photo: BIRTHPIX/Shutterstock

A friend asks:

“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.

1. Any new plan should, at the very least, make healthcare more affordable for every disabled person.

The simplest goal is to make all healthcare free, meaning no individual charges for services or insurance, with everything financed through taxes. But a plan like this will be hard to pass, and taxes, too, need to be affordable. At least some disabled people might be willing to accept some copayments and premiums, if they were truly affordable and considerably less expensive than they are now. No cost is best, and worth pursuing. But lower cost would be an improvement worth considering.

2. Disabled people need a system where health insurance eligibility is impossible to lose.

For people with disabilities, this is as important, if not more important than affordability. Nobody should have to constantly hit an arbitrary and fluctuating medical, financial, and administrative sweet spot just to maintain their health insurance. But disabled people have to worry about this all the time. Possible loss of health insurance affects and constrains every major decision in our lives. Our real, practical freedom would improve immensely if we didn’t have to think about being “on” or “off” health insurance ever again.

3. Any new healthcare plan must provide full and generous coverage of long-term care in disabled people’s own chosen homes.

One reason this is such a pivotal issue for disabled people is that it’s easy to imagine a revolutionary healthcare plan passing, ushering in a golden age of fair and comprehensive healthcare for everyone…but with long term care left out. Most people barely know what long term care is or how it’s paid for now, and just aren’t asking for it in healthcare proposals. But disabled people are asking, and the answers we tend to get are vague at best. People with disabilities must be able to get the care they need to maintain their independence in their own homes, and we don’t want to see a new healthcare plan that simply dumps money into nursing homes. For many of us, this is a potential deal-breaker.

4. It must include full and generous coverage for medical and adaptive equipment, with a minimum of red tape and waiting.

One of the biggest complaints disabled people have about Medicaid, Medicare, and private insurance is that they are all nightmares to deal with when it comes to equipment like wheelchairs, ventilators, communication aids, and other assistive technologies. It’s not enough for a healthcare plan to say it “covers” medical equipment. Not having to pay out of pocket for a wheelchair sounds like heaven, but not if you can only get one every 10 years even though you use it every day and it takes months to get competent repairs. There is a lot of room for improvement here, but it won’t happen if we don’t insist on it.

5. Cost control measures must include real input from people with disabilities.

Almost every healthcare proposal in play relies at least partly on “cost containment,” a promise that through some combination of better management, less bureaucracy, and more rationally applied science, a fairer and more generous healthcare system will actually be cheaper. It’s true that healthcare in the U.S. is comically expensive. And it’s not hard to believe that there’s a fair amount of waste, gouging, and medical quackery involved. But what look like “ineffective” or “wasteful” treatments to some are often life-sustaining support services for people with disabilities. People with real-life knowledge of what it takes to live well and independently with disabilities must have a real voice and real influence when decisions are made about what is and isn’t worth paying for in any new healthcare system. Our lives really do depend on it.

The disability community includes people with a wide variety of beliefs about healthcare. But regardless of our ideological preferences, disabled people also have certain very specific things we need to see. And we are going to keep asking about them, even when it’s not politically convenient.

For more information: This chart from the Kaiser Family Foundation compares the major for healthcare bills currently being discussed, with details that include coverage for disability-related services.

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Andrew Pulrang is a disability blogger, co-coordinator of #CripTheVote, and worked in Independent Living for 22 years.

3 responses to “5 Things Disabled People are Looking for in Healthcare Plans as the 2020 Elections Approach

  1. I’m a mother first then Legal Guardian, Advocate, Voice, Protector of a 27 year old Non Verbal Autistic Young Man. I have be fighting this system since the day he aged out of Child Care. About 9 years now and 3 group homes later, I can’t even give you a number on the care givers and supervisor’s, house managers that have been in and out of my son’s life because of the rate of pay they receive. We are talking about our loved ones the most vulnerable individuals. Individuals with disabilities that are either born or something tragic has caused the disability, people do not choose to become disabled and they deserve to live a life as normal and full as any non disabled person. I have to be grateful that my son sleeps in a bed, has something in his tunny and someone in case of emergency. But I was promised that he would have more from these companies. Inclusion to the community, medical care, hygiene care, proper nutrition and physical fitness. For 9 years I can’t tell you anywhere they have taken my son to include him with his community. He’s gone without medical and dental care period. They feed him boxes of Hamburger Helper sometimes without hamburger they let him drink liter’s of pop weekly. As for proper hygiene he has a bottle of body soap I purchased in January of 2019 and it is November, he needs verbal prompting in the shower but they document he showers independently. As for physical fitness my son goes to a day program at 7am and returns at 3pm he’s in bed for the night by 6pm and I receive emails constantly that for some reason my son tries getting up at 2am and they don’t understand why he won’t sleep until morning. Seriously??? And they are reimbursed $10,000 a month from Medicaid. I have contacted anyone and everyone possible to figure out how this happens and have gotten nowhere. They pass you from one person to the next until people give up. I’m not giving up, I will fight for a quality of life my son is intitled to by our Constitutional Rights.

  2. Approximately 90% of primary care physicians are unwilling to accept or to continue to treat patients who have disabling medical conditions which cause chronic pain.

    This has resulted in the massive abandonment + withholding to non provision of urgently + timely needed medical care including both pain control + non pain medications to Americans who have an array of disabling medical conditions which cause widespread chronic severe intractable pain which is uncontrolled + killing medically abandoned persons based on disability + often gender with both forms of discrimination being unlawful yet unenforced.

    Many people who are qualified + even medically referred palliative care patients are routinely being denied access to this instrumental + effective integrative + collaborative team delivery of medical, social worker, emotional support, + spiritual care for persons who “have at least one medical condition which won’t get better +/or will continue to get worse which also causes chronic pain,” along with providing family + caregivers support and providing updated prognosis information along with planning for qualified and referred palliative care patients, family and caregivers.

    The flaw in the Palliative Care delivery model is that it requires the agreement of a notably 90% absent primary care physician population to agree to accept, treat, refer, and manage the Palliative Care of patients who “have at least one medical condition which won’t get better or will continue to get worse and causes chronic pain as a result.”

    Even tertiary institutions such as the USC Keck Medical Center are refusing to treat qualified + referred palliative care patients by their primary care physicians and their Palliative Care Department including telling qualified + referred palliative care patients that USC Keck Medical Center’s Palliative Care Department refuses to permit patients who have chronic pain to access USC Keck Medical Center Palliative Care services, despite the presence of chronic pain being a condition for qualifying to receive palliative care.

    Additionally, the USC Keck Medical Center Palliative Care Department is demanding as of at least October 18, 2019, that qualified palliative care patients referred to the USC Keck Medical Center Palliative Care Department not be provided with palliative care but instead be forced to give up all medical care – which is absolutely not a requirement to obtain Palliative Care plus such a requirement is specifically the opposite of Palliative Care – and instead “agree to give up all medical care and treatment” in order to enter what is incorrectly claimed to be Palliative Care but is really Hospice Care:

    Qualified and referred patients to the USC Keck Medical Center Palliative Care Department are being required to “agree to die in lieu of the provision of the provision of Palliative Care” to otherwise qualified and referred patients per the USC Keck Palliative Care Department and USC Keck Medical School “Palliative Care” and, just as shockingly, “Medical Ethics” Instructor Dr. Sunita Puri.

    Patients who are qualified and referred to the USC Keck Palliative Care Department for Palliative Care, not Hospice Care, are then denied Palliative Care, denied an appointment with a Palliative Care physician, and they are then required to provide the name and contact details of a different Palliative Care Program which the USC Keck Medical Center Palliative Care Department then refuses to cooperate with the forwarding of the qualified and referred palliative care patients’ medical, emotional, spiritual, family and caregiver support, prognosis and planning.

    The USC Keck Medical Center and its Palliative Care Department then withholds the patients’ qualified referral for Palliative Care plus destroys the palliative care patients’ qualified referrals to Palliative Care, all other USC Keck Medical Center specialists referrals, all USC Keck Medical Center ordered diagnostic testing referrals, all USC Keck Medical Center prescribed patient mobility devices including a prescription for a needed electric wheelchair because the patient can no longer walk and never could use a manual wheelchair, and USC Keck Medical Center prescribed pain and non pain medications on a 30 day or 90 day basis depending on the medication and what it is prescribed to treat – but then is knowingly and willfully withheld – by the USC Keck Medical Center primary care physicians.

    The USC Keck Medical Center primary care physicians who confirmed their willingness to provide the medical care and monitoring plus management of medications and palliative care then abandons the qualified and referred palliative care patients in less than 24 hours.

    The USC Keck Medical Center then knowingly and willfully is confirmed by the USC Keck Medical Center to scrub, eliminate, and destroy ordered – along with any obtained – lab tests, chart notes, specialists + diagnostic referrals, and lab test findings: The USC Keck Medical Center qualified palliative care patients referred to the USC Keck Medical Center Palliative Care Department are then informed their USC Keck Medical Center Records have been “scrubbed” and no longer exist. The USC Keck Medical Center Palliative Care Department then falsely reports that qualified and referred palliative care patients “requested to be treated elsewhere.”

    Persons who are disabled by one – or more co-morbid – medically, physicallly, and functionally disabling medical condition(s) which won’t get better +/or will continue to get worse which causes chronic pain are being disenfranchised and literally being coerced into dying in USC Keck Medical Center Hospice instead of being provided with the Palliative Care they were otherwise qualified to receive and were referred to receive.

    This widespread withholding of medical care from disabled patients in chronic pain is discriminatory, unlawful, patient abuse, patient torture, attempted patient homicide, and demonstrates the intended genocide by the USC Keck Medical Center Palliative Care Department of disabled patients with chronic pain.

    When such unchecked human rights violations are being perpetrated at a top medical center and medical school, such as USC Keck, which is being reported here as my own first hand account as a multiply medically, physicallly, and functionally co-morbid disabled qualified palliative care patient in uncontrolled widespread severe intractable chronic pain, my and the millions of other disabled patients in chronic pain in the USA have no chance of survival while all forms of medical care, including but certainly not limited to pain control, continues to be knowingly and willfully withheld from disabled patients in chronic pain. I hope I survive long enough to testify against USC Keck Medical Center and the “physicians” who have perpetrated these human rights abuses and crimes.

    Perhaps some day this post will become part of the United States of America Disabled Chronic Pain Patient Holocaust Memorial and Museum.

    Connie Ray
    •Gifted & Talented K-12 Student
    •Top 10 USA Swimmer
    •USA Olympic Trials Qualifier
    •Vocal Performer including Disneyland & Musician Demo Vocalist
    •B.A. Psychology with Honors
    •Consecutive Full Time Bank Teller, New Accounts Representative, Loan Processor, New Employee Trainer, and Operations Manager at age 21 and age 22
    •M.S. Special Education – Learning Disabilities and Gifted Education – Summa Cum Laude
    •Preliminary and Clear Multiple Subjects Credentials – Summa Cum Laude
    •Special Education Teacher Credential – Summa Cum Laude
    • Former Part Time Public School K-6 PE Instructor and Substitute Teacher to Grades 4/5/6 Special Education Teacher – At Risk, Immigrant, ESL Learning Disabled Students 90+ hours per week while consecutively completing 1 Master’s Degree + 2 Teacher Credentials nights, weekends, and summers
    • Former Lifeguard and Instructor – Swimming, Fitness, Dance, Yoga, Downhill Skiing
    •Forner Recreation & Social Instructor and Coordinator
    •Former World Traveler & Cultural Explorer
    •Forced against my will by the USA government to be multiply medically, physicallly, functionally, and co-morbidly disabled and to attempt to exist in poverty in uncontrolled widespread severe intractable pain while surrounded by crime including murders
    •Unlawfully medically abandoned after failed spinal surgery including15mm and 9mm post surgery disc ruptures followed by multiple chronic unresolved infections
    •Unlawfully deprived of pain control despite being exempt from the defunct CDC Opioid Prescribing Guidelines

  3. I agree with everything in this article, but I would like to see a a #6 for prescription drugs. People with disabilities can often be required to to take specialty medication and brand name drugs vs. generic. These things are not by choice, but necessity. When you have epilepsy and start on a new drug it is dangerous to switch to the generic, especially if you have received good results from the brand name. As medications become more available to treat things that were not treated before, a label of “specialty medication” can be a real problem for people with disabilities. Thanks for the article!!

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