WORK TIREDLESSLY TO VOTE THE ABLEIST OUT OF OFFICE.
Ask why they don’t boast of bare minimum:
Saving taxpayer dollars.
Constituent services.
Compliance with city laws.
Then vote them out!
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.”
DISABILITY ADVOCATES CAN HELP CHANGE
LEGISLATION FOR THE BETTER
 |
| Shaun Hill |
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.
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:
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.
DISABILITY ADVOCATES CAN HELP CHANGE
LEGISLATION FOR THE BETTER
“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.
DISABILITY ADVOCATES CAN HELP CHANGE
LEGISLATION FOR THE BETTER
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:
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.
DISABILITY ADVOCATES CAN HELP CHANGE
LEGISLATION FOR THE BETTER
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.”
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.
DISABILITY ADVOCATES CAN HELP CHANGE
LEGISLATION FOR THE BETTER
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.
