The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990. The ADA prohibits discrimination on the basis of disability in employment, state and local government services, public accommodations, commercial facilities, transportation, and telecommunications. Although the ADA has served people with disabilities for the last 25 years, there remain areas where constant improvement is possible and other areas—like information technology—where disability rights have only recently become an issue.
Transformation of Rights
Peter W. Thomas, JD, principal with law firm Power Pyles Sutter & Verville, Washington; general counsel for the National Association for the Advancement of Orthotics and Prosthetics (NAAOP); and counsel for the O&P Alliance, discusses the general impact that the ADA has had on anyone with a disability—from those with limb loss to spinal cord injury to diabetes.
“[The ADA] is a rather generic application of nondiscrimination provisions, and whether it’s employment or access to public services…, that’s obviously a big impact that shouldn’t be underestimated,” Thomas says. The ADA affects how people with disabilities function in everyday life.
The ADA has broken down barriers across the board for all people with disabilities, and John D. Kemp, Esq., president and CEO of The Viscardi Center, a nonprofit organization, which provides services that educate, employ, and empower people with disabilities, has watched this campaign from the front row. Kemp is a congenital quadruple amputee who relies on four prostheses for all that he has accomplished.
“In my lifetime, I have seen us go from no rights to civil rights. I’ve seen the idea that we’re the objects of charity and pity, to being a social minority model,” Kemp says. “It’s been a pretty profound transformation of society in a relatively short period of time for a very large protected class group.”
There were so many issues for people with disabilities that had to be addressed at the beginning of the journey that the change has been pretty dramatic, Kemp says. “I think we’re still working our way through it, but it’s been pretty transformational.”
Current State of Disability Rights
A bilateral below-knee amputee since 1974, Thomas says that, in his own personal experience, he has noticed a huge difference in acceptance, tolerance, and consideration of people with disabilities. For example, there is a prevalence of automatic door openers at office buildings and curb cuts on street corners.
He acknowledges, however, that these accommodations are more common in urban areas and that there are areas that still have not done enough to comply with the ADA in terms of such barriers.
Some areas of the country face historical building exemptions or financial boundaries in making architectural upgrades—“try getting around New Orleans in a [mobility] scooter; it’s brutal,” Thomas says—so compliance of accessibility is a patchwork throughout the country.
“But, by and large, in any urban center, in any major suburban area, the 25 years of new construction guidelines, of retrofitting, and of making reasonable modifications has resulted in a much more open and accessible society,” Thomas says.
One area that is just entering the arena of ADA compliance is information and communication technology. Kemp says that for 15 years he has been asking the federal government to get involved in this area and apply the ADA to the Internet; regulations addressing accessibility of information technology should be coming out this year.
The reason this area has been largely untouched is that guidelines of any kind would limit the creativity and innovation that is integral to the process of advancing the technology. Thought leaders in information technology have developed smartphone applications to alert people with disabilities when accessible buses will be available at their bus stop and programs to dictate text onto a phone or computer, so that people can write without use of their arms. But many programs, like the dictation software, are quite expensive, and unless these technologies are made available to everyone, they do not comply with the ADA.
“There are just so many wonderful things that are brought to us by technology that I don’t want to regulate it so that we stifle innovation and creativity,” Kemp says. “But I think the greatest danger is that they still feel like they’re not subject to any civil rights requirements and that web developers don’t have to make their products, their services, accessible. I think they do.”
The Affordable Care Act (ACA)
When the ADA passed, health insurance and nondiscrimination based on health status were not included. “In a sense, the Affordable Care Act is the final chapter in the Americans with Disabilities Act,” Thomas says.
To conclude that chapter, the ACA provides that there be an essential health benefits package that includes rehabilitative and habilitative services and devices—and the language was intended to include orthotics and prosthetics in the package.
Thomas says that when the Congressional Budget Office looked at what this plan would cost, they included the cost of orthotics and prosthetics. The federal government, however, has deferred to the states—“and, frankly, to the insurance companies,” Thomas adds—“to make these health plan benefit packages as noncontroversial as possible.”
New York State took this opportunity to notably reduce the amount of prosthetic coverage it offers to its residents. When the state legislature created the benchmark for insurance coverage, it used Oxford EPO as the foundation; that plan—the least expensive and most commonly sold plan among small businesses in the state at that time—had a “one limb per lifetime” rule on prosthetic coverage.
This restriction came as a shock to Kemp when he was at his prosthetist’s office getting fitted for replacement components. Dan Bastian, CP, co-founder of Progressive O&P, Albertson, New York, realized that authorizations for his patients, including Kemp, were being denied due to “one limb per lifetime,” and that is when he got involved.
Bastian, himself an above-knee amputee, then began fighting against the New York State legislature to change that regulation. He created an online petition (found at www.onelimbforlife.com), which garnered more than 15,500 signatures. Just before press time, Donna Frescatore, the executive director, New York State of Health, sent a letter to Senator Kemp Hannon declaring that “New York’s benchmark plan will be modified starting on January 1, 2016, to include coverage for the cost of repair and replacement of external prosthetic devices for both adults and children.” This change will affect health insurance plans for both individuals and small-employer groups.
Bastian tells Amplitude that he’s not stopping there—he aims to make this coverage a permanent law. “This also now has huge national implications for states that don’t have adequate coverage,” he says. “This should now force all states to cover prosthetics fairly.”
Bastian points out that the kind of restriction that was in place in the New York policy breaks the law. The ACA states that there should be no caps on coverage, but denying people coverage on replacement parts or devices is a cap. In addition, discrimination based on age is prohibited under the ACA, yet anyone older than 18 was restricted from having more than one limb per lifetime. The ACA also prohibits discrimination based on disability, and Bastian and others made a case that denying prosthetic coverage only affects those with a specific disability—amputees.
New York State isn’t the only state that was imposing caps on prosthetic coverage, but it was one of the most restrictive.
“The ACA offers a huge closing chapter to the Americans with Disabilities Act, and when states are permitted to do things like they were doing in New York, it just undercuts the whole value of that law,” Thomas says.
Future of Disability Rights
Kemp says that, moving forward, he hopes that all aspects of the rights provided by the ADA continue to improve. In the area of public transportation, for example, more cities need fully accessible transit systems. “Transportation is always going to be something that needs to change,” he says.
Thomas echoes that sentiment. “I’ve had two artificial legs since I was age 10 and I’m 51 now, so it’s not like I’m a novice in walking around on artificial legs.” But recent surgery relegated him to a mobility scooter or crutches, and he says it was a brutal awakening to how haphazard and unreliable the paratransit system is in some cities.
Like Kemp, Bastian, and many other amputees, Thomas has experienced firsthand the changes in life options for people with disabilities. Now there are available devices “that allow people to go to work and pay taxes and raise their family and run marathons and climb rock walls and do all kinds of stuff. That’s an incredible advance from where prosthetic care was 20, 30, 40 years ago—if they have access to the technology,” he says. “If they don’t, then they’re kind of back in the ’60s.” And virtually everyone agrees that improvements in access to healthcare—particularly prosthetic care—would be welcome.
As Thomas points out, the ACA is the next component to the ADA. Health insurance wasn’t addressed in the ADA, and prior to January 1, 2014, the healthcare system was centered around discrimination based on health status; insurance companies asked questions of applicants to determine the level of risk that applicants provided for purposes of setting the premium, he says—“the higher the risk, the higher the premium.”
The ACA prohibits discrimination based on health status in the purchase and administration of health insurance. Under the ACA, there should be no annual or lifetime limits in benefits, no pre-existing conditions exclusions, guaranteed renewability of insurance plans, guaranteed issue, and government subsidy if necessary.
“That’s really powerful. And it is, in fact, the one major thing that the ADA did not address,” Thomas says.
By Stephanie Zultanky
