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.

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