10 Ways Healthcare Reform Might Help People with Disabilities

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Healthcare reform discussions frequently center on the changes anticipated for the general population. But people with disabilities — about 56 million in the United States — are generally left out of the healthcare reform picture.

That absence is not unusual. According to Lisa Iezzoni, MD, Professor of Medicine and Director of the Institute for Health Policy at Harvard Medical School, discrimination against people with disabilities stretches back thousands of years in human history. They “have been discriminated against, stigmatized, institutionalized, and hidden behind closed doors,” she says. The disability rights movement, which began in the 1970s with deinstitutionalization, made progress through the passing of the Americans with Disabilities Act in 1990. Now, says Iezzoni, new health reform measures will offer people with disabilities important additional protections.

Healthcare reform has a variety of names, including the Affordable Care Act (ACA), the Patient Protection and Affordable Care Act (PPACA), and Obamacare. All of the terms refer to the same federal statute that President Obama signed into law on March 23, 2010.

The diversity of disability

Disability can occur in any body system or several systems at once. Sometimes, a disability is clear, but other disabilities can be “invisible.” The two most common types of disability center on mental health or musculoskeletal disturbances, according to the Social Security Administration. But disability covers a huge spectrum from developmental and congenital conditions to sensory, cognitive, and emotional differences. With the aging baby boomer population and the link between disability and age, the number of disabled persons is expected to grow considerably in the coming years. Many of them will be women, who tend to experience higher rates of disability than men.

Data on the healthcare experiences of people with disabilities are limited, says Iezzoni. Much of it comes from national surveys. What researchers do know is that people in the disabled community experience relatively increased rates of poverty, low education, unemployment, domestic violence (including against disabled men), and physical and attitudinal barriers to a good quality of life.

Barriers to care

 Barriers to care might be the most important obstacles, literally and figuratively, that a person with disabilities encounters.  These barriers are among the issues that the new healthcare reform can address. In comparison with the nondisabled in the United States, people with disabilities receive fewer screening and preventive services. For example, women with disabilities have much lower rates of Pap testing and breast cancer screening and are less likely to be asked about reproductive health and contraception. “Part of this is attitudinal,” said Iezzoni, noting that doctors often behave as if sex and reproduction are just not part of the lives of people with disabilities.

Physical barriers also hinder access to care, and even medical equipment itself is often not adaptable for people with disabilities. For example, medical examination tables are very high, and women with disabilities may have difficulties getting onto one or maintaining the typical position for a pelvic exam. The same might also be true for mammography equipment.

“Women with disabilities are far less likely to get standard of care procedures for breast cancer and their outcomes are worse,” Iezzoni explains, referring to her own research. Among the disparities that health reform is intended to address are higher rates of mastectomy (complete breast removal), rather than lumpectomy (limited to removal of the tumor) for women with disabilities, lower rates of radiation therapy needed to produce disease-free survival, and higher death rates from breast cancer. Providing people with disabilities a chance to be more independent is also a pivotal issue for healthcare reform.

Trying to build in measures to improve access for people with disabilities is uncharted terrain, however, according to Iezzoni. That in itself might serve as an intangible reflection of what people with disabilities can encounter every day in a world without appropriate accommodations. It is also, though, terrain that the new healthcare reform might smooth out for the population with disabilities (see sidebar), lowering barriers and improving access … and quality of life.

10 Ways Healthcare Reform Might Help Individuals with Disabilities

1. Insurance can no longer be denied to individuals with pre-existing conditions, including disabilities and chronic medical conditions.

2. Ends the practice of rescissions, which allowed insurers to drop coverage for individuals who develop a serious health condition.

3. No more lifetime or yearly dollar caps on coverage will be allowed.

4. Beginning this year, health plans must cover basic preventive care, annual checkups, and health screening at no charge to anyone.

5. Encourages more accountable, coordinated care through development of patient-centered medical homes. However, one key problem is that many of the contracted organizations have had no experience providing care for individuals with disabilities.

6. New minimum technical criteria for medical diagnostic equipment that are accessible to people with disabilities must be specified within 24 months of passage of health reform, potentially helping improve access to care. However, the standard falls short in that installation requirements in physician offices or clinics are not specified.

7. All federally conducted or supported health care programs, activities, and surveys must add six specific questions reflecting functional areas pertinent to individuals with disabilities—seeing, hearing, cognition, mobility, self care, and performing errands into all health survey data. This data has not been collected previously.

8. The Centers for Medicare and Medicaid Services are testing a new Independence at Home Demonstration Program at 18 sites across the country. It will offer primary care services at home to people with multiple chronic conditions. The goal is to improve health outcomes and lower Medicare costs. If this program proves successful, it could permit broad changes in supporting independence at home across the nation.

9. Long-term care services and supports for people in their home or the community are ratcheted up through a variety of enhancements.

10. Aging and Disability Resource Centers are funded through ACA grants to states. These centers are meant to offer people visible and trusted information on long-term services and support through Medicare.  

 Note: Iezzoni’s remarks are from a presentation she made at a Rising Women’s Voices teleconference on the impact of health reform for women with disabilities. Story written by Laura Newman. This story first appeared on DoubleXSci.org with a slide show (not posted here), but viewable on DoubleXSci. Shout out to Emily J. Willingham and Jeanne Garbarino for hosting it, invaluable editing, and images added to original post.

In Her Own Words: A Young Woman With
Rheumatoid Arthritis Acknowledges Her Disability

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Credit: National Institutes of Health.

How do young people cope with chronic, debilitating conditions, like rheumatoid arthritis and fibromyalgia? Patient POV interviewed Lisa Jaffe Hubbell, a young woman, who only last month acknowledged to herself, that she is disabled, and is unlikely to regain function. Lisa is also a successful writer and blogger, who blogs regularly at Landguppy Productions.

In this interview, she discusses her concerns about getting quality medical care, affordability of health care, and why the presidential election worries her.

 

 

 

Can you tell me how long you have had rheumatoid arthritis? Is this the key reason you are now disabled? Do you have other conditions that are contributing to your disability?

I was diagnosed 10 years ago now, and I think I always figured I’d get better. Or better enough to be able to do most of the things I want to do. Over time, as more and more drugs worked for a while and then failed – and none worked fabulously – I came to realize I’d never be the same. I’d never go for a long hike, be able to prepare for a dinner party without having a few hard days after it was over, go more than a day without a mid-day rest. I’m not the chief jar opener any more. I can’t always bend over to fill the dog’s water dish. And she’s big and pulls hard when confronted by a dastardly squirrel.  I can’t always hold her back.

My main diagnosis is sero-negative rheumatoid arthropathy, but I also have fibromyalgia, which rears its head when I have a flare. I also have an autoimmune thyroid disorder (Hashimoto’s disease).

What medications are you taking? Does your insurance cover these medications? Are they affordable?

I have had great medical coverage and mediocre coverage over the years.

The first few years, my insurance came from a small company and the copays became a significant burden. Biologics are thousands of dollars a month, and if I am responsible for a 10% copay, that’s hundreds of dollars. A couple of years I actually hit my stop loss limit, where you spend so much that the insurance company stops charging you copays. After that, I had insurance through Microsoft, which had no copayments. It was great. Now, I’m somewhere in the middle, with 10% copayments on my biologics –although I am enrolled in a program where the pharmaceutical company covers that copayment – and $15-30 copayments for other drugs. I have copayments for all my appointments, too.

My drugs change with my condition. Currently, I take Actemera, an infused biologic, every month. I take as little meloxicam as possible because my BP spiked about 18 months ago from the NSAID use and my kidney function started to look bad last month. I take Cymbalta and at night I take tramadol for pain. I’m off methotrexate because my liver function isn’t fabulous any more. My other meds are all related to side effects of the drugs I take for my arthritis. I take an anti-androgen called spirolactalone because my hair falls out from the atenalol I take for my blood pressure. I take omeprezol for my stomach when the meds upset it. One of my drugs – I have never figured out which – makes me sweat profusely, but only on my head. I’m not joking. Just my head. So I take a drug called glycopyrolate so that I’m not that sweaty girl when I go out in public. I also take fish oil, folate, B complex, CoQ10, a multivitamin, and because so much of what I take constipates me, a stool softener and Miralax.

Has dealing with insurance issues been difficult? How so?

My biggest problem happened at the end of summer, when a change of insurance companies forced us to complain a lot and often until they approved my infusion treatments. That I had been covered continuously and approved for the treatment by one insurer seemed to make no difference to the new one. My infusion was two weeks late, and a month later, I’m still trying to get back up to where I should be at this point after my infusion.

Is there anything that you’d advise people with your condition in terms of negotiating good healthcare?

Don’t be afraid to be a pain in the ass. And be sure that people understand that this isn’t just a little disease that causes pain. I have a shorter life span ahead of me, I am at risk for some pretty awful things like sudden gastric bleeds, sudden cardiac events, liver cancer. I could go on. This is a systemic disease that can impact not just my mobility, but my cognitive abilities, my vision. It will be, at least indirectly, the eventual cause of my death.

What kind of outside help do you get? If we lived in a more perfect outside world, is there any kind of help that you think you should be made available to you?

I have someone else do my garden and a cleaner twice a month. I pay for those services. I have a teenager who has to do a lot of fetching for me. Evenings are hard, and once I stop “doing” I find it hard to start again. I spent many years thinking I must just be lazy. It took a lot of therapy to stop those messages from running through my head. In a perfect world people would be more connected to their neighbors and none of us would be shy about asking for help. I’ve always been the helper, not the helped, so I don’t ask. I muddle through. My house isn’t as clean as it could be. I need the interior painted, but until I have 10 grand to spare, that won’t happen because I really can’t do it myself. Especially the taping off. Again, if I was more secure in my disability, I’d probably ask for more help. But that’s just too hard for me at this point.

As you became more disabled, have you had to make physical accommodations in your home, travel, work?  How easy or difficult were they to arrange? Emotionally, how have you dealt with these shifts?

I haven’t had to do much of any accommodating except for reducing the quantity of what I do. I use my teenager to bend over for me. I do find it hard to get into my car. I have people carry my groceries to the car for me. I try to avoid stairs. So if I go to a concert, I ask for disabled seating, which can be crappy, or can be with the sound guy (the best seats sound wise in the house). I haven’t taken a flight in a while, but I think next time I’ll ask for a ride to the gate and early seating.

Compared with other health problems like diabetes or hypertension, how do you think others look at rheumatoid arthritis?  Is there anything you would want other people to understand about this?

People don’t view rheumatoid arthritis as a bad disease. They hear arthritis and usually think “old people.” But that’s osteo arthritis. And while the joint damage is the same, the osteo version doesn’t come with other systemic problems.

It’s kind of invisible unless you are so sick you need a wheelchair or walker. People look at me in the disabled parking space and I’m sure some think I’m using my parents’ placard. But it’s mine, and while I don’t always need it, I usually use it. I view it as the only perk of being sick. I wish people understood how hard it is to just move – not always because of pain, but because of what doctors refer to as stiffness, but which I talk about in terms of feeling like I’m trying to move through thick mud or cement. And the fatigue is probably the most debilitating part of the disease.

How adequate are social supports in your life? In others with RA?

I have great friends and a wonderful boyfriend who understand what I can and can’t do. It can be an isolating condition, though, because you just don’t look sick.

Is there anything that you would want the world at large to know about a debilitating condition like RA and how you could live happier with it?

I think my biggest message is that when you see someone in a disabled space with a placard who looks like you, don’t assume they aren’t sick. When you see the house with the ratty yard that needs attention, don’t figure they are just lazy. The mom who never helps out in the classroom? You have no idea what her issues are. And ask if you can help with specific things. Asking if you can help with yard work, window washing, or something specific is better than telling someone to call if you need anything.

Because you live with RA, have you made any additional efforts to write a living will and advance directives than perhaps the next person not having RA?

I had a really bad flare last January and was sure I was going to die. I’d never felt that way before. So I redid my will and advance directives and trusts, talked to friends and family. I have every hope of living for at least another half century and try to live my life in a way to make that happen. I’m hopeful, though, not stupid

Are there transitions that may lie ahead that scare you?

I worry about what happens if Romney and the Republicans win. I haven’t gotten a divorce yet because I need my Wasband’s insurance. I can’t afford the kind of insurance I’d need to adequately treat my disease. I hope in 2014, the coming of insurance exchanges will allow me to divorce and find insurance that I can afford and that meets my needs.