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Few people would argue with the proposition that the 1990 Americans with Disabilities Act changed the lives of people with physical and sensory disabilities for the better. In the 30 years since it was passed, physical access in the form of curb cuts, ramps, wheel-chair accessible doorways and buses, automatic doors, closed-captioned TV shows, and reserved parking spaces have become the norm. These environmental modifications have reduced barriers for people with physical disabilities to work in many office buildings and attend classes in public schools and universities.
Yet significant challenges remain for the tens of millions of Americans with physical disabilities. The unemployment rate for people with disabilities increased from 7.3% to 12.6% between 2019 and 2020 (1). However, the job market worsened due to the COVID-19 pandemic, and the number of people with disabilities who had jobs fell by 18.8% compared to 15.5% of people without disabilities. Transportation is still a barrier, especially for those who live outside cities with well-developed public transportation networks. For those who need some assistance with activities of daily living and can’t afford to hire a direct support professional on their own, publicly funded home- and community-based services (HCBS) may be available. HCBS is a program designed to allow people with disabilities to receive services in their communities, as opposed to in institutions. However, many of these publicly funded services are restricted to those with low incomes under the Medicaid program.
And while public attitudes toward people with disabilities is changing, much work remains to be done, disability advocates say. “Things are certainly better but are they good? No,” says Sara Karon, PhD, who is a collaborator working at RTI and leads work at the Center for Rehabilitation Outcomes to create new measures of HCBS outcomes for people with disabilities. “There are two big challenges: access and attitude. Progress has been made on access but there is more to be done. And there is still ‘ableism.’ People will talk about what ‘those people’ need. It’s the ‘othering’ that’s the issue.”
There are two big challenges: access and attitude. Progress has been made on access...And there is still ‘ableism.’ People will talk about what ‘those people’ need. It’s the ‘othering’ that’s the issue.
Sara Karon, PhD
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The number of people in the United States with physical disabilities continues to grow, partly because Americans are living longer in general. According to the CDC, in 2018, roughly 24.8 million people, or 10% of the population, reported having serious difficulty or inability within six domains of functioning: seeing, hearing, mobility, communication, cognition, and self-care (2).
Expanding the availability of HCBS at the state level would go a long way to helping people with disabilities, including physical disabilities, live the lives they want. HCBS can include help with transportation, getting dressed, housekeeping, and other activities of daily living. The Biden Administration has proposed a massive increase in spending on HCBS in its American Jobs Plan, which is pending in Congress. But even if the bill is passed with the HCBS funding intact, there’s a big problem. To provide services to the more than 800,000 people on state waiting lists, the U.S. would need 1 million more trained workers than it currently has. To attract that many people, the $9.50-12/hour wages earned by most home care workers would need to significantly increase, disability advocates say.
Maggie Winston, an Alaska resident with tetraplegia who is unable to use her arms and legs, lives in a state where she qualifies for home-care aides to support her. She lives independently in her own home and has a full-time job and a part-time teaching gig. Even though direct support professionals (DSPs) in Alaska start well above minimum wage at $16 an hour, Winston’s biggest challenge is holding on to the aides who help make that life possible. “As a significantly disabled person, I'm able to be successful because I'm well supported by DSPs who are valued and paid well. Unfortunately, that is a rare situation in their field,” she says. “There’s this whole culture of not acknowledging and honoring the people who come into our homes and provide care.”
There’s this whole culture of not acknowledging and honoring the people who come into our homes and provide care.
Maggie Winston
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Another challenge has to do with access to technology. When the ADA was passed, the Internet revolution was in its infancy. Today, laptops and mobile phones are nearly ubiquitous, but the technology ecosystem is behind the curve, disability advocates say. Retired university professor Katherine Schneider, who is blind, is on a mission to make websites and apps more accessible to people with sensory impairments. Schneider runs into obstacles all the time, including recently when she tried to sign up a friend for a COVID vaccine shot. She got through the form just fine until she was directed to click on a map to find vaccination sites near her. “Maps don’t work for blind people. Almost accessible isn’t accessible.”
Schneider, the author of “Hope of the Crow,” a book about aging with disabilities, spends a significant part of her time writing to companies or institutions with inaccessible websites but says she gets a response from 1 in 10 at best. When she does hear back, it’s mostly ‘Maybe we’ll get to that in our next version,’ or ‘We’re just a small nonprofit. We can’t afford to do anything about that.’”
"It’s clear that access is more than a matter of buildings.?As our world is increasingly online, there will continue to be access issues."
Sara Karon, PhD
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The movement to extend the ADA’s protections to the country’s technology infrastructure took a step backwards in April 2021. A federal appeals court in Florida ruled that Winn-Dixie, the large grocery store chain in the southern U.S., doesn’t have to make its website accessible to blind customers who want to fill their prescriptions online (3). The court ruled that the ADA applied only to access to Winn-Dixie’s physical stores, not its website (3). And because the plaintiff could fill his prescriptions in person, he wasn’t being discriminated against (3). The ruling contradicted a 2019 decision in another federal case that found Domino’s Pizza had violated the ADA when it failed to make its app accessible to blind people (3). The issue is likely to wind up before the U.S. Supreme Court, legal experts say.
“It’s clear that access is more than a matter of buildings. As our world is increasingly online, there will continue to be access issues. I would think that making a website accessible would be a relatively low-cost, easily accomplished form of access but apparently that’s not the case,” says Karon. “Deciding what kind of access is required seems to be a matter of splitting hairs, and not at all an assumption of ‘The world should be accessible.’”
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References:
- Person With A Disabilities: Labor Force Characteristics. (2021, February 24). News Release. .
- Centers for Disease Control and Prevention. (2021, April 14). FastStats - Disabilities or Limitations. .
- Weiss, D. C. (2021, April 8). 11th Circuit decision 'effectively closes the internet's doors to the blind,' plaintiff's lawyers say. ABA Journal.