NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

Scott Wiebe, MDA’s Director of Community Programs, is thrilled that applications for MDA Scholarships are opening soon.

The highly competitive scholarships pay up to $5,000 for first-year awardees and $2,500 for existing recipients who renew the scholarship.

“The scholarships are based on merit in leadership and community involvement,” Scott says.

Now in its third year, the program receives about 200 applications and awards scholarships to the top 10 ranked applicants.

MDA Scholarships are not just for high school seniors — anyone with a neuromuscular disease who is in college, a trade school, or a vocational program is eligible.

Scott is proud that MDA is making a positive impact by being part of the support system for scholars with disabilities who are tomorrow’s business leaders, disability rights attorneys, physical therapists, and more.

 

 

NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

Maxey Mapp, who lives with myotonia congenita, which causes episodes of muscle stiffness, is pursuing a bachelor’s degree in exercise and sports science at the University of North Carolina. He plans to be a physical therapist.

In addition to an MDA Scholarship, he receives need-based financial aid through his school, and the university has helped him find paid summer internships.

Maxey built his financial support by being organized.

Before applying, he created an account on fastweb.com, an online scholarship database, to keep track of the scholarships he was applying for and when they were due.

“You need to stay on top of scholarship applications — most require essays and letters of recommendation.

Some ask you to create a 30-second video.

Pay attention to deadlines and the time you need to meet them,” he says.

 

 

 

NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

Grace LoPiccolo, who lives with Charco-Marie-Tooth disease and walks with leg braces, is a Saint Louis University senior, majoring in bioethics and Catholic studies. After graduating in 2026, she plans to attend law school.

The MDA Scholarship is her only disability-based financial aid.

She also receives a merit-based scholarship through her school and a tuition contribution for her service as student body president.

Even when applying for funding unrelated to disability, Grace advises not to shy away from framing your eligibility, skills, and goals through a disability lens.

“My general college essays were about my disability.

When I applied to law school, I mentioned why I want to be a disability rights attorney.

Communicate yourself as a real person who also has a disability,” she says.

NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

Because she was in the National Honor Society, Abby Dreyer looked for honors programs at universities and learned that ECSU’s honors program pays full tuition.

She also contacted ECSU’s Office of AccessAbility Services, which linked her to a disability-focused scholarship that helps cover part of her housing and food costs.

“Always do your research on websites and via direct email to accessibility offices,” she advises, noting that each person knows their own needs best.

NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

Abby Dreyer, who lives with spinal muscular atrophy (SMA) and uses a power wheelchair, is studying business administration at Eastern Connecticut State University (ECSU).

She is an MDA Scholar and wrote a Quest Blog post about transitioning to college and living independently.

Her small-town high school was not helpful in her college search, so Abby took on the research herself.

 

NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

SSI provides monthly payments to people with disabilities who have little or no income.

State-run agencies provide VR funds to help people with disabilities find and keep jobs.

They may cover education-related expenses that help position a person to join the workforce.

“We all know it’s more expensive to live as a person with a disability,” says Annie Tulkin, MS, CEO and Founder of Accessible College, LLC.

“The more funds you keep in your own pocket, the more you can live independently in school and after graduation.”

NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

Annie Tulkin, MS, CEO and Founder of Accessible College, LLC, offers these essential tips for students:

For ongoing financial support, stay in contact with your college or university’s financial aid office and disability or accessibility office.

For support with expenses related to personal care attendants, accessible housing, and transportation, pursue Supplemental Social Security Income (SSI) and Vocational Rehabilitation (VR) funds.

NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

Annie Tulkin, MS, CEO and Founder of Accessible College, LLC, offers these essential tips for students:

Work with your high school counselor.

Most high schools have access to college planning platforms that can help find financial aid.

Use the Swift Student Form to create a Disability Expenses Request Letter and submit it to your college or university’s financial aid office.

Federal law allows financial aid officers to consider disability-related expenses when determining the amount of financial aid a student can receive.

NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

Annie Tulkin, MS, CEO and Founder of Accessible College, LLC, offers these essential tips for students:

Before applying for college funding, understand each funding source’s requirements and how much time you will need to meet them.

Many scholarships require personal essays and letters of recommendation, which take time to write.

Look for scholarships offered by organizations that support people with your diagnosis.

(For example, MDA’s scholarship for students with neuromuscular diseases.)

NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

Annie Tulkin, MS, CEO and Founder of Accessible College, LLC, partnered with MDA to compile essential resources for college-bound young adults with neuromuscular diseases.

Find links to webinars and other information at Accessible College and the Muscular Dystrophy Association (MDA): Working Together to Support Students.

NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

One key to getting financial assistance is starting early.

According to MDA’s College Planning Timeline, 10th grade is a good time to start making a college budget plan.

While researching schools, reach out to their disability or accessibility officers to ask about scholarships and financial aid options for students with disabilities.

College scholarship applications are generally due in the fall or spring of a student’s 12th-grade year.

The deadline for the Free Application for Federal Student Aid (FAFSA), a program everyone should apply for, is usually June 30 in the year you are applying for.

State deadlines may vary.

NAVIGATING COLLEGE SCHOLARSHIPS AND

FINANCIAL ASSISTANCE WITH A DISABILITY

Like many high school students, students with neuromuscular diseases may be looking at college as their next step.

But with college tuition costs continuing to spiral, according to U.S. News & World Report, you might be wondering how you’ll afford it.

The key may be combining scholarships, grants, and other financial aid programs and benefits.

Here, current college students and an expert provide tips for finding funding to help you start and finish college.

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

Last year, United Spinal Association government relations and advocacy staff pushed strongly for passage of the ABLE Age Adjustment Act, along with the National Association of State Treasurers and the disability community at large. They met with key members of Congress to answer questions and secure their support. United Spinal advocates included Shelley Jaspering of Ames, Iowa, who testified before the U.S. Senate Committee on Aging in support of the bill. 

The ABLE National Resource Center has a helpful list  with details and contact information for all the state programs. 

https://www.ablenrc.org/select-a-state-program/#:~:text=Choose%20the%20program%20that's%20right,outside%20residents%20into%20their%20program

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

Even if you don’t have the financial resources to save for big-ticket items, ABLE accounts can still be a useful option. 

Gayle Stanford says that family and friends can make gift contributions into your ABLE account. 

Similarly, if you ever raise money through crowdsourcing, you could put those funds into an ABLE account to save or grow them further.  

Presently, 46 states and the District of Columbia offer ABLE accounts to their residents. 

If you live in one of the four states that don’t have ABLE programs — Idaho, North Dakota, South Dakota and Wisconsin — you can still open an account through any of the 30 states that have programs available to outside residents.

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

Gayle Stanford, a wheelchair user with cerebral palsy, works part time at Columbus Speech and Hearing in Columbus, Ohio. She’s on Medicare and receives small Social Security Disability Insurance payments. 

Stanford says her medical expenses — including things not covered or only partially covered by Medicare — were growing and crowding out what she had left to make house payments. 

“I pulled about $45,000 out of my ABLE account to pay my house off. 

That way, I could focus my earnings on paying medical expenses and not worry about falling behind on the mortgage,” she says. 

“I still have about $20,000 left in my ABLE account. I have about one-third in high risk, one-third in medium risk and one-third in low-risk growth.” 

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

Valerie Rose Crisci created the website Respect the Vest to raise awareness of service dogs, and would like to create a nonprofit to do the same. 

“Trying to save the money for how much it costs to start a nonprofit is one of the reasons I opened my ABLE account,” she says. 

“Without having a CalABLE account, I had to worry about saving money — because if I were to save money, I could lose my government benefits. With a CalABLE account, I am able to save up to $100,000 without that worry.” 

Monthly SSI benefits peak at $914 for an individual and $1,371 for a couple, barely enough for many to pay rent — let alone cover food, transportation and other daily expenses.  

On top of that, if you save more than $2,000, you risk having SSI cut off. “SSI is poverty, being constantly at the brink of ruin,” Allen says.

“ABLE is a way of supporting people with disabilities, a group that is quite chronically underserved.” 

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

As an undergraduate student at The City University of New York School of Professional Studies and a recipient of SSI, Valerie Rose Crisci finds her ABLE account is the perfect way to save wisely without losing benefits that keep her active and in school.

Crisci uses a power wheelchair due to a progressive neurodegenerative disease and is legally blind due to optic nerve atrophy.  

She has saved $1,330 with her CalABLE account.

It’s money she plans to put to good use.

“My current service dog, Cleo, is getting up there in age. Canine Partners for Life requires their recipients to donate at least $1,000, and there is the price of traveling to and staying in Pennsylvania for three weeks during team training,” she says.

“CalABLE offers a Visa card that can be used much like a typical debit card in order to spend the money that has been saved.

I plan on using this method when it’s finally time to go to Pennsylvania.”  

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

The definition of a qualified expense is quite broad.

Virtually anything that maintains or improves the health, independence and quality of life of a person with a disability is a qualified expense — so it is not limited to medical copays and home accessibility modifications. 

Dante  Allen says he uses relatively small withdrawals to pay out-of-pocket costs.

He has good insurance, but it only pays for a basic wheelchair.

To upgrade to a titanium frame, his out-of-pocket cost was about $900.

He used his ABLE account to cover it.  

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

Dante Allen uses his ABLE account to pay for out-of-pocket costs on mobility equipment, like upgrades on his wheelchair.

“It is a great way to grow money long term … better than a Roth IRA or other IRA.

An IRA has a significant penalty if you withdraw money before you are 59 ½ years old,” he says.

“But you can withdraw ABLE account money for any qualified expense at any age.” 

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

ABLE accounts are structured like individual retirement accounts. 

You put money in them after taxes, and don’t have to pay taxes on any investment profits. 

Dante Allen is a wheelchair user and the executive director of the board at California Achieving a Better Life Experience, the organization that runs California’s ABLE program.

Through CalABLE, Allen owns an ABLE account and sees it as a useful financial tool, even though he has a good job and does not qualify for government benefits.