This post is written by Kamil Fulwood Spagnoli, a new Graduate Fellow at the Center for Health, Media & Policy. Ms. Fullwood Spagnoli is working towards her MS degree in Health Communications at Boston University. She plans to focus her health communication work on people living with disabilities and maternal child health. Her full bio is here.
Unseen Gap in Health Care Access
Over the past decade, there has been debate over how to provide increased access to health care. We all heard the fanfare about the Affordable Care Act and the national conversation that explored its benefits and shortcomings. This law has made it easier for people with preexisting conditions to receive coverage and has allowed Americans to purchase insurance through federal and state exchanges.
The intent of the Affordable Care Act was to move toward universal access but the disabled still face being excluded from the health care system. There was much vitriol and acrimony during the debate about health care reform. Opponents of the proposed changes countered each proposal with arguments why the reforms would be destructive. In other words, there was a robust discussion.
Exclusion of the disabled was never among the opponents’ counter arguments.
How the Disabled’s Access to Health Care is Dwindling
According to the US Census Bureau, 1 in 5 Americans has some form of a disability. In the 2012 National Health Interview Survey, 20.6 million Americans were identified as having vision loss. The survey also found that the visually impaired have access to technology at an alarmingly low rate. Over 1.5 million people, 15 years of age and older with limitation in seeing, reported having access to the Internet. Almost 1 million said they use a computer regularly. Of those, about 196,000 people have a severe limitation in seeing and have access to the Internet.
Unintended Effects of Efficiency
Increasingly, health care is following the trend toward exclusive access through technology−from using electronic health records to scheduling appointments over the Internet. What these statistics show us is that as the industry adapts to business models that rely on the Internet to manage and deliver health care, the visually impaired may be excluded from readily available information about their illness, symptoms and treatment options and health prevention.
A growing number of health care organizations are scheduling appointments, managing patient records, prescriptions, and disseminating health information through online platforms that are not required to be accessible to visually impaired patients.
For those blind patients lucky enough to have assistive technology, there is no mandate to make health sites compatible to disabled patients.
The World Wide Web Consortium (W3C) is an international community that is committed to making access to the web available to everyone. W3C’s Web Accessibility Initiative provides strategies, guidelines and resources on how to make the web accessible to people with disabilities. For non-governmental website developers these standards are voluntary and therefore not enforceable.
That’s why when a visually impaired person purchases a computer with assistive technology and she clicks on one of those websites it’s not compatible with their screen reader and magnifier and not accessible.
Non-disabled people have direct access to these same websites. They are at an advantage and can access comprehensive health care information and services, financial services, educational platforms and social networks.
The disparity that this problem creates is the huge gap between those who can see and those who cannot in regard to managing the basic tasks of everyday life.
Social and Economic Marginalization Carries On
It can be argued that the isolation experienced by the blind and visually impaired is more entrenched than racial segregation. There has never been a high profile movement to demand solutions to the poverty and discrimination that people living with a disability experience daily.
Large numbers of the disabled live at or near the poverty line and can’t afford the available assistive technology. Computer systems that include screen readers, can cost upwards of $10,000. Not all visually impaired individuals are eligible to receive purchasing assistance from state vocational rehabilitation departments.
Increasing internet-based access to the most fundamental services would certainly facilitate a demographic shift, economically, educationally and potentially impacting health outcomes.
Making the Internet Accessible
One solution might be to offer tax credits as an incentive to tech manufactures to integrate assistive technology into off the shelf computer systems. This incentive would increase access to technology for the visually impaired.
As a society, we may be forced to address the disparities created by a failure to ensure access to online services because of the increasing prevalence of disabilities attributed to the aging population in the United States. The question is how do we successfully design health care strategies that are accessibly to all, not just the advantaged?