YOUR VOTE MATTERS:

DISABILITY ADVOCATES CAN HELP CHANGE 

LEGISLATION FOR THE BETTER

Deborah McFadden

Voting is a right of all Americans, but too few are exercising that right.

According to the US Census Bureau, 67% of eligible voters cast ballots in the 2020 presidential election, but 62% of people with disabilities voted.

An analysis by the Election Assistance Commission found that if people with disabilities had voted at the same rate as people without disabilities, there would have been about 1.75 million more voters.

“One in four people have a disability. It’s the largest minority voting bloc in America. It is even bigger when you consider the family, friends, and caregivers,” says Deborah McFadden, who was instrumental in writing the ADA and getting it passed in her role as US Commissioner of Disabilities under President George H. W. Bush.

Deborah now operates Abilities Count to assist families in navigating disability benefits.

“Our voices have been heard.

But if we were even more active — as voters and as advocates pressing for inclusion — we would have a huge voice that could positively impact many things.”

YOUR VOTE MATTERS:

DISABILITY ADVOCATES CAN HELP CHANGE 

LEGISLATION FOR THE BETTER

Shaun Hill

Shaun Hill, MDA’s Manager of Public Policy and Advocacy, is leading the Access the Vote campaign to provide resources and guidance for navigating the electoral process.

She urges MDA members to use their right to vote to champion legislation impacting the disability community.

“Access the Vote is all about education, engagement, and empowerment,” Shaun says.

“The initiative aims to help people understand our government, the issues that affect our community, and how these things intersect with our daily lives.”

Along with teaching individuals how to be active, informed voters, Access the Vote addresses the barriers people with disabilities still face to exercising their right to vote — from lack of transportation to inaccessible voting machines.

It is a vital resource for information on disability voting rights and practical tools for preparing to vote.

Deborah McFadden was instrumental in writing the ADA and getting it passed in her role as US Commissioner of Disabilities under President George H. W. Bush. Deborah now operates Abilities Count to assist families in navigating disability benefits.

She recounts: “I was talking to five people who had just turned 18 that I helped with SSI and vocational rehabilitation, and I asked them if they were registered to vote.

Not one was.

I told them voting is the cornerstone of Democracy.

If there is one thing I can say to parents of children with disabilities, it is to vote and encourage your children to register when they turn 18.”

MDA wants to ensure that everyone in the neuromuscular community has the knowledge and opportunity to engage in the electoral process at all levels of government.

YOUR VOTE MATTERS:

DISABILITY ADVOCATES CAN HELP CHANGE 

LEGISLATION FOR THE BETTER

Congress is also considering legislation related to Home and Community-Based Services (HCBS). The HCBS Access Act would increase access to in-home caregiving for people who need assistance with activities of daily living, such as bathing and dressing. 

The HCBS Relief Act supplies temporary additional funding for HCBS services with the goal of increasing the caregiver workforce.

Other important issues and pending legislation include:

• Making sure telehealth continues to be accessible for those who use it for essential medical care.
• Increasing access to genetic medicine and counseling.
• Improving access to specialized multidisciplinary care for the amyotrophic lateral sclerosis (ALS) community via the ALS Better Care Act.

From the presidential election in November to the thousands of statewide, district, and local races taking place throughout the year, MDA encourages its members to make their voices heard at the ballot box.

YOUR VOTE MATTERS:

DISABILITY ADVOCATES CAN HELP CHANGE 

LEGISLATION FOR THE BETTER

While the neuromuscular and disability communities celebrate the progress made, they know there is still much to do to ensure that people with disabilities have the same opportunities as everyone else.

“Our community has told us to focus on reforming federal benefit programs, to prioritize SSI benefits that are better tailored to the century we live in,” says Paul Melmeyer, MDA’s Vice President of Public Policy and Advocacy.

“Without changes, people risk SSI or Medicaid benefits if they pursue a career and their pay makes them ineligible.”

The Supplemental Social Security Income (SSI) Penalty Elimination Act, introduced in the Senate in 2023, addresses this issue.

If approved, it would increase SSI asset limits from $2,000 for individuals and $3,000 for couples to $10,000 for individuals and $20,000 for couples — and these limits would be adjusted annually for inflation.

This would make it easier for individuals with disabilities to hold jobs and save for unexpected expenses without jeopardizing their benefits.

YOUR VOTE MATTERS:

DISABILITY ADVOCATES CAN HELP CHANGE 

LEGISLATION FOR THE BETTER

Improving air travel for people with disabilities is an area MDA has been engaged in for many years.

For example, in 2022, the US Department of Transportation (DOT) held a listening session on air travel with wheelchair users.

People with neuromuscular diseases were among the broad base of advocates who detailed unacceptable conditions — everything from injuries caused by improper seat transfers to damaged mobility devices.

In response, the DOT released the Airline Passengers with Disabilities Bill of Rights.

In late 2023, after MDA advocates shared their personal air travel experiences with Transportation Security Administration (TSA) officials, the TSA invited MDA to provide officer training on interacting with travelers who use mobility devices.

This year, Congress passed the long-awaited Federal Aviation Administration (FAA) reauthorization. This major piece of legislation includes reforms that will make air travel more accessible for people with disabilities, including:

• Airport and airline personnel will receive stronger, hands-on training on assisting passengers with disabilities and stowing wheelchairs.
• Airlines will be held accountable for reporting damage to wheelchairs.
• The FAA will continue to study the option of allowing passengers to stay in their wheelchairs during flight.
• People with disabilities will have a seat at the table when the government makes future decisions about air travel.

This law is the result of advocates sharing their air travel stories and telling lawmakers how the provisions in the bill will improve their flying experience.

MDA advocates made personal connections with their representatives to provide key information during the reauthorization process.

“I would say that accessible air travel is one area where MDA has helped create immense progress,” says Mark Fisher, MDA’s Director of Advocacy Engagement.

YOUR VOTE MATTERS:

DISABILITY ADVOCATES CAN HELP CHANGE 

LEGISLATION FOR THE BETTER

Another win for the neuromuscular community came in May 2023, when Medicare announced it would cover seat elevation systems for power wheelchairs.

Leading up to the announcement, the MDA Advocacy team submitted formal comments to the Centers for Medicare and Medicaid Services (CMS) supporting this additional coverage.

In addition, MDA’s grassroots advocates sent in their own personal comments encouraging the CMS to make this change.

“Our advocates are spectacular at telling their stories to show why changes to laws and rules are important,” says Mark Fisher, MDA’s Director of Advocacy Engagement.

“One thing I love about advocacy at MDA is how our advocates fight so hard for change, whether it’s a big piece of legislation or a small tweak within an agency. I’m so proud of what our advocates have accomplished.”

YOUR VOTE MATTERS:

DISABILITY ADVOCATES CAN HELP CHANGE 

LEGISLATION FOR THE BETTER

It’s encouraging to look at how the disability community has positively influenced public policy regarding disability benefits in the last few years.

In 2022, Congress passed the ABLE Age Adjustment Act. Starting in 2026, the age of onset of disability to be eligible for an ABLE account will change from 26 to 46.

These tax-advantaged savings accounts allow individuals with disabilities to save and pay for disability-related expenses without endangering their benefits.

The policy change is estimated to make an additional 6 million people eligible for ABLE accounts.

In addition, the 2022 Inflation Reduction Act requires Medicare to cap the out-of-pocket costs of medications at $2,000 starting in 2025.

Currently, people with neuromuscular diseases on Medicare can see drug costs in the many thousands of dollars.

Advocates from the neuromuscular and disability communities who contacted their members of Congress were crucial in getting this law passed.

In 2023, MDA teamed up with other disability advocacy organizations to successfully defend the Medicaid program from work requirements and cuts that would have made it harder to qualify for Medicaid services or reduced benefits for people with disabilities.

 

YOUR VOTE MATTERS:

DISABILITY ADVOCATES CAN HELP CHANGE 

LEGISLATION FOR THE BETTER

When you think about great legislation for people with disabilities, you probably think of the Americans with Disabilities Act of 1990 (ADA).

This important law prohibits discrimination against individuals with disabilities in many areas of public life, including jobs, schools, businesses, and transportation. It is designed to ensure that people with disabilities have the same rights and opportunities as everyone else.

“The disability community came together to make this landmark law, showing the collective power we have,” says Deborah McFadden, who was instrumental in writing the ADA and getting it passed in her role as US Commissioner of Disabilities under President George H. W. Bush.

Deborah now operates Abilities Count to assist families in navigating disability benefits.

“While passing the ADA was a major achievement for the disability community, much work remains to be done,” she says. “I can’t emphasize enough how important it is to make your voice heard.”

Thanks to the dedication of countless advocates like Deborah, in the decades since the ADA was passed, we have seen some important progress in public policy and disability awareness.

From lobbying efforts by MDA and other organizations to calls, emails, and letters to representatives by grassroots advocates, making our voices heard has been a powerful tool for change.

WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

Physical therapy clinics, often like fitness gymnasiums, are designed for a wide range of exercises, manual therapy, mechanical devices, and stations for heat, cold, electricity, sound waves, and radiation treatment.

PTs also can help a person adjust to using a prosthesis or assistive mobility device.

The goal is to minimize loss of mobility via specific treatment, fitness and wellness programs tailored to the person’s condition, age, goals, etc.

People with physical disabilities also benefit from an occupational therapist.

This is similar, but instead of a fitness center, the clinic is set up like a workplace – an office, industrial or other setting.

OTs retrain people with physical disabilities to return to their jobs via new approaches to doing physical labor or with assistive devices.

OTs also train people with physical disabilities for an entirely new career, should their disability preclude their reassuming their prior job duties.

Many of United Spinal Association’s Rehabilitation & Therapeutic members provide PT, OT, and other invaluable services for people with physical disabilities.

WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

People with physical disabilities are served by dozens of nationwide nonprofit advocacy groups that raise funds for research, treatment, adaptive equipment, mobility devices, job training, educational opportunities, quality of life, political advocacy and other efforts that champion inclusion in all aspects of daily life.

Longstanding nonprofits include, but are not limited to, United Spinal Association, United Cerebral Palsy, Arthritis Foundation, Muscular Dystrophy Association, National Multiple Sclerosis Society, Epilepsy Foundation and Spina Bifida Foundation.

Most people with physical disabilities can benefit from a licensed physical therapist.

Hospitals have in-patient physical therapy for people recovering from surgery or treatment.

Outpatient physical therapy clinics have significantly grown in the 21st century.

A physician usually writes a prescription, and the PT analyzes X-rays and medical reports.

The physician then interviews the person while creating a course of treatment.

WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

Even with the boost in work-from-home technology during the COVID pandemic, people with physical disabilities were pushed into jobs below their ability, less than full-time work or unemployment – at numbers far lower than people who do not have a disability.

This leads to poverty or barely enough income to pay for accessible housing, transportation, health care, personal care and food.

Adults with physical disabilities report experiencing frequent mental distress almost five times as often as adults without disabilities, as researched and reported by the CDC.

A CDC study found that about one-third of adults with physical disabilities experienced frequent mental distress, defined as 14 or more reported mentally unhealthy days in the past 30 days.

During the COVID pandemic, mental health issues rose in the disability community.

Isolation, a reduction in PCA availability, and having an underlying condition that made the impact of COVID more dangerous contributed to depression, anxiety, and other issues.

Prevalent causes of mental health distress among people with physical disabilities include poor access to health care, isolation from the community, and poverty. Peer support groups may help break down isolation.

WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

United Spinal Association has focused on the quality of life for people with spinal cord injuries/disorders for over 75 years. The association advocates for all wheelchair users and those using assistive mobility devices – no matter the underlying cause.

Rheumatoid and osteoarthritis and related inflammatory conditions are the most common physical disabilities resulting from a medical condition post-birth.

Cerebral palsy is the most common physical disability from childbirth.

Spinal cord injury is the most common physical disability resulting from traumatic injury, though some SCIs can result from a medical condition.

More than one in four people (27%) have some level of disability that impacts their daily lives, according to The Centers for Disease Control and Prevention. 

This includes physical, visual, hearing and cognitive disabilities. 

That means there are roughly 90 million people in the United States who have a disability.

The U.S. Census Bureau’s American Community Survey estimates that at least 7% of Americans have a physical disability. 

U.S. Bureau of Labor statistics prove that people with physical disabilities are by far the most under- and unemployed of all marginalized groups in America.

WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

Many people with physical disabilities benefit from personal care attendants. 

These trained professionals are not nurses but are skilled at helping with daily routines to prepare for work, meals, recreation, and sleep.

Also, since the passage of civil rights laws such as the Americans with Disabilities Act in 1990, adaptations to transit, transportation, sidewalks, parks, education centers, workplaces, shopping centers and the arts can make them accessible to people with disabilities.

Examples of physical disabilities

Physical disability is often the result of a medical condition, such as muscular dystrophy, multiple sclerosis, arthritis or epilepsy.

Some disabilities are present at birth, such as cerebral palsy, spina bifida and partially formed/not fully functional limb or extremity.

Physical disability also can result from an injury, such as loss/reduction of use of a limb or spinal cord injury.

WHAT IS A PHYSICAL DISABILITY?

INSIGHTS FROM THE UNITED SPINAL ASSOCIATION

Physical disability is defined as a limitation on a person’s physical functioning, mobility, dexterity or stamina.

Although a physical disability substantially impacts an individual’s ability to do normal daily activities, it does not preclude quality of life.

Many people with physical disabilities are employed, go to school, raise families and engage in other meaningful activities.

Physical disability can impact a person’s ability to bathe, dress, prepare meals, do chores and other daily activities.

It can affect speech and communication.

But with proper support and services, a person with a physical disability’s life is as meaningful as anyone else’s.

The use of durable medical equipment, such as shower benches, grab bars, and wheelchairs, can mitigate physical disability.

Smart technologies that allow appliances to be operated by voice have increased the ability of people with physical disabilities to control their environment.

And a whole host of assistive technology exists to support people with physical disabilities in leading rich and fulfilling lives.

IN PRAISE OF THE HUMBLE SIDEWALK

THE SINGLE MOST CRITICAL PIECE OF INFRASTRUCTURE

Fabian De La Espriella, AICP, principal of Miami-based Urbe Studio, has nearly two decades of experience in transportation planning — and is a big fan of what sidewalks provide, particularly when it comes to equity.

"Sidewalks are the single most critical piece of infrastructure when it comes to reducing disparities between communities, especially those that are currently underserved, which coincidently are also suffering from disproportionate pedestrian death rates," says De La Espriella, vice chair of APA Florida's Gold Coast chapter.

"This equity approach applies to sidewalks being of vital importance for people with disabilities, no-car households, children, and the elderly. 

Sidewalks in some communities are key to getting access to transit, food, parks, or schools."

Every planning agency, local jurisdiction, and government official should prioritize safe sidewalks, he says.

"Having safe, healthy streets is part of increasing a city's competitiveness.

A key component to achieving this outcome is having safe sidewalks, which increase access and create a higher value place," he says. 

"It is time that we acknowledge the responsibility of transportation investments in increasing equity in our communities, especially when it comes to sidewalks."

IN PRAISE OF THE HUMBLE SIDEWALK

 FIRST AND LAST MILE MVP

"You can build a premium bus stop with shelters and amenities, but if you can't get to it, the transit fails," says David Haight, FAICP, a planner and senior project manager with planning, design, and engineering firm Atkins.

"Without accessible sidewalks, transit doesn't work."

Apart from being wide enough to accommodate pedestrians with mobility aids like wheelchairs, accessible sidewalks should include pathways that don't flood, have crosswalks, and help people navigate from bus stops through parking lots to retail.

 Designers should work to understand and match users' expectations, too.

"People walk in a straight line. 

They will try to cross — without the protection of a painted crosswalk or `walk' sign — rather than cross two additional lanes of busy traffic to get to the official crosswalk," he explains. 

And at four-lane roads, a median should be large enough to serve as a haven for those who can make it only halfway to the other side of the street. 

Otherwise, people — some with kids, some using assistive mobility devices — are stuck on a tiny piece of ground with huge trucks and speeding cars rushing by them.

IN PRAISE OF THE HUMBLE SIDEWALK

 A CONNECTOR FOR PEOPLE (AND ROBOTS?)

Amin Gharebaghi, co-founder and CEO of GeoMate, is preparing sidewalks for an increase in traffic. 

His firm works with multiple cities across North America to analyze key features impacting urban accessibility like curb ramps, slope, width, and surface quality.

"Sidewalks act as a main connector in municipalities, bringing residents closer to their communities and local economies," he says. 

And it's a critical time to ensure that those connections work at the human level first.

"As cities become increasingly dense and new mobility technologies [like delivery robots] begin to operate on sidewalks, enhancing sidewalk safety and accessibility is becoming more important now than ever," he explains.

IN PRAISE OF THE HUMBLE SIDEWALK

A TOOL OF ENVIRONMENTAL JUSTICE

                                                            (Clematis Street West Palm Beach, FLA -- by Dover Kohl Partners)

The founder and president of nonprofit Strong Towns, which focuses on pedestrian-friendly development, believes sidewalks and streets play an important role in environmental justice.

"Sidewalks are often treated as afterthoughts in urban transportation projects," says Charles Marohn, P.E. 

"This is backwards. The function of an urban street is to serve as a platform for building wealth. 

On a street, we're attempting to grow the complex ecosystem that produces community wealth."

One big way that can be accomplished is through proper maintenance. 

Marohn advocates for city plowing of sidewalks, instead of making snow and ice clearance the responsibility of thousands of individual property owners. 

He says it's equally or even more important than street plowing — which often creates impediments to pedestrians.

"In most of our poorest neighborhoods, the public sector is neglecting their maintenance responsibilities, and this contributes to a vicious cycle of decline," says Marohn, author of Confessions of a Recovering Engineer.

"When the streets have more potholes, the parks have more weeds, and the sidewalks have more cracks and gaps than the ones in our affluent neighborhoods, the signal being sent is that decline is going to continue, regardless of what the property owners do."

IN PRAISE OF THE HUMBLE SIDEWALK

 MORE SPACE FOR PEOPLE PLACES

"Often, the pedestrian realm is undersized and relegated to the leftover space within the right-of-way after the traffic engineers have taken all the space they need for vehicular lanes," says Michael Huston, AIA, LEED-AP, owner of Urban Arts, Inc. and partner of Civic Plan Studio.

To support a healthy, active "pedestrian realm" that people of all ages and physical abilities can enjoy, he says our sidewalks need to be much wider.

"To accommodate the necessary sidewalk clear zone and streetscape furnishings needed to create a comfortable pedestrian environment, a minimum of 15 feet is recommended between the street curb and the building," Huston adds. 

"It is not unusual to have a pedestrian realm that is 20 to 30 feet wide on streets that have intensive pedestrian and outdoor dining use."

 

IN PRAISE OF THE HUMBLE SIDEWALK

ELIMINATE GENDER DISPARITIES

According to Leslie Kern, PhD, associate professor of geography and environment and director of women's and gender studies at Mount Allison University, research shows that women take more pedestrian trips daily as part of their commutes and household-serving errands. 

That means effective sidewalks are of heightened importance to their daily lives.

"Barrier-free, wide, and well-maintained sidewalks are particularly important for women, who still do a higher share of caregiving work," says Leslie Kern, author of Feminist City: Claiming Space in a Man-Made World. 

"Navigating sidewalks with strollers and small children is difficult if there is not enough space, if there are barriers at curbs or a lack of curb cuts, or if the sidewalk must be shared with cyclists."

Plus, there's the obvious safety component, she adds. In neighborhoods without sidewalks, people are forced to walk in the street, providing no protection from speeding vehicles — or the people operating them.

"Women and people of marginalized genders regularly experience harassment from car drivers," she says.

"If sidewalks can create more distance between pedestrians and drivers, this might either cut down on this form of 'drive-by harassment' or reduce the fear it causes in walkers."