10 Ways Healthcare Reform Might Help People with Disabilities

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.

Patient POV Update: Immigration and Abortion News

I regret not posting here recently. It’s been a very busy time for me and I am following several issues that will make their way to this blog soon. I can’t give you a rank order of what’s most important, but I think there is a heck of a lot going on out there that warrants an in-depth look.

Immigrants with Mental Illness Need Rights to Counsel

US Homeland Security citizenship and immigrationImmigration is becoming a big issue (no surprise) since the Boston bombings.

The US Department of Homeland Security handles deportations. If you can,  grab a copy of this week’s New Yorker, I highly recommend reading: “The Deportation Machine.” It’s a horrifying story about what happens when a mentally ill person gets trapped by the Department of Homeland Security. In this case, the person was U.S. born! Authorities had good information and bad information, but whenever they uncovered good information, they wrote it off as being wrong.

On a related note, in California, a class action suit is underway that raises the issue that mentally ill immigrants should have access to counsel before they are hurdled into deportation. It’s a right that has been denied unfairly until now. The case may come to closure in the coming weeks.

Separating the Gosnell Case from Safe, Legal Abortions

Kermit A. Gosnell is a 72-year-old black doctor who performed abortions at  Women’s Medical Services, an abortion clinic in Philadelphia. Many women treated there were poor and black. Abortions were done late, many beyond the legal limit of 24 weeks for abortion in Pennsylvania.

It’s the one and only case that I’ve ever heard of since abortion became legalized in 1973 rife with charges of a doctor operating outside the law,  aborting viable infants long past legal gestational age for abortions in Pennsylvania, stockpiling infant parts in jars, filthy conditions, using unlicensed staff to do abortions, and practicing outside of the law. I am appalled by the conditions presented related to this case. However, it is noteworthy that the Judge cleared Gosnell of several charges earlier this week, as reported in the New York Times last night.

The case has been on my mind quite a bit. I was active in the movement to legalize abortion. and writing about this case requires attention to detail. The lurid details of the case revolt people, no matter what side of the abortion spectrum they are on.

Concerns I have about this case include the following:

  • that Gosnell is brought to justice;
  • that the media makes clear that Gosnell is a renegade, who based all accounts, operated outside the law, with no regard for safety.
  • that Gosnell does not resemble licensed abortion providers;
  • Legal abortions are extremely safe, far safer than childbirth;
  • Restrictive abortion laws do not serve the public’s health, but that make it unacceptably onerous for women to get timely abortions and clinics to operate economically.

I hope that the public and lawmakers put this case into proper perspective because it could unjustly continue policies that already have negatively affected access to timely abortions in many states.

I have serious concerns about the media handling of this story. My points are actually quite different from what you might have read. Expect to hear more from me on this in the coming weeks.

Rarely do I make direct appeals for financial contributions for this blog. I receive absolutely no $$ for doing this work. I do my best to hunt down stories you might not have read elsewhere.

If you like what you see here and want to see more, consider making a small donation of $10 or more to keep this going. Alternatively, if you have paid work for someone with my skills, please contact me at patientpov “at” gmail “dot” com.

Immigration and Healthcare: No Talking Points This Election

Immigrants on a steamship heading around the Statue of Liberty. Credit: Library of Congress

This week, I will be attending a two-day meeting on immigration and healthcare.  It’s not an area that I know a lot about and I am interested in your thoughts on the topic. Presidential candidates are not discussing the issues.

One worry that I have concerns privatizing of many public healthcare programs that have served immigrants well for centuries. America seems keen on privatizing right now, but the benefits and harms are not clearly known.

These issues are on my mind:

  1. Will immigrants who were able to get care in the public sector still have the same access once health care is privatized?
  2. Will preventive care, chronic care be available?
  3. Will more care be provided in the emergency room?
  4. Will shrinkage of the public sector mean that they will be sicker?
  5. What will happen to elderly immigrants? Will the healthcare system accommodate immigrants when they decline?
  6. What can be done in health policy and planning to bolster equity and fairness?

What are your thoughts on this issue?


Alzheimer’s Disease Issues – Day 2:
Let’s Keep the Conversation Going

I spent today at an all day Alzheimer’s meeting, taking notes and tweeting. I am also exhausted. Many of you know that this is my 23rd consecutive day blogging here. There are a lot of pluses to posting every day, but on a night like this, where I have been focusing all day on new, often dense material, I run the risk of being incoherent.

Here are some issues that are related to aging, Alzheimer’s, and dementias, that we all might want to think about:

I am tremendously concerned about the future of Medicare and access to affordable drugs and long-term care services. I also worry about extension of the retirement age that is under discussion when so many Americans over age 50 don’t even have work or are under-employed. News that women are not bounding back to work as quickly as men is frightening. The jobs picture must change.

Like many disease categories, Alzheimer’s is spoken of frequently in terms of early detection and urging transparently charting it on people’s medical records. Yet, as speakers pointed out, once someone is labeled as having cognitive problems on health records, they may become more dispensable at work because Alzheimer’s care is extremely costly. How can we come to grips with this?

Stigma associated with cognitive impairment remains huge, current treatment may alleviate symptoms in some, but treatments only help a small proportion of a people for a relatively small window of time.

There is a movement promoting using creative arts to engage people with Alzheimer’s. Today, we saw the movie, I Remember Better When I Paint, available on DVD from the Hidalgos Foundation. There are people around the US and elsewhere working with theater, dance, music, and art to engage Alzheimer’s patients.

We have a long way to go in shaping a fair and equitable national planning strategy for Alzheimer’s care. This conversation should continue.

Follow me on twitter at lauranewmanny.