November is National Family Caregivers Month!

Accessible Living: Lease on Life

Use resources and your advocacy skills to find accessible rental housing

A few years ago, Michele Boardman was ready to move into her first apartment. But Boardman, 30, who lives with limb-girdle muscular dystrophy (LGMD), had several factors to consider besides rent and location. 

She had to find a place that would accommodate the modifications she needed: a front door with a number-pad lock, doors removed from her bedroom and bathroom for easy wheelchair access, under-sink cabinet doors removed for knee space and a barrier-free shower. 

She found what she needed in a ground-floor apartment outside of Philadelphia. It was just 20 minutes from her parents’ home as well as from the office where she is a community work incentives coordinator for AHEDD, a nonprofit human resources organization. 

A place to call your own

For individuals with neuromuscular diseases, finding rental housing that is, or can be made, accessible can be challenging. In many cases, organizations dedicated to fair housing or independent living may be able to help you in your search. 

Brian Peters, the housing subcommittee co-chair of the National Council for Independent Living and a community access and policy specialist for Independence First in Milwaukee, notes that you should consider not just what is available in the community you want to live in, but what the housing is like. Older apartment buildings with narrower hallways and tighter bathrooms, for example, are less likely to have the space for power wheelchairs without significant modifications. Newer buildings, particularly those built after 1991, when the Fair Housing Act’s rules about new construction went into effect, are more likely to have wide doorways, ramp access and other accessible features.

Once you’ve narrowed down your options, approach potential landlords with an open mind. “Think of it as a negotiating process, not a yes or no question,” says Peters. “While landlords are obligated to make or allow reasonable accommodations or modifications, what’s considered ‘reasonable’ can vary. Think about what works best for you. If you can’t get that, what can you live with? What can the landlord live with?”

Boardman asserts this is no time to be shy. “Having an open but assertive approach is helpful,” she says. “Test out your negotiating skills and know your rights.” 

Right at home

It’s a good idea to know the fair housing laws confirming that individuals with disabilities are a protected class. “If you’re having difficulty with a landlord, a good resource is your local fair housing organization,” says Peters. “They should be knowledgeable about both the federal law and any local ordinances or state laws. They can educate the landlord about what is required.”

Peters notes that any modifications a landlord agrees to are supposed to be paid for by the renter and then restored, at the renter’s expense, upon moving out. But there are some exceptions. 

“If the property is federally funded under the Department of Housing and Urban Development or Department of Agriculture, the property owner may be required to cover the cost of reasonable modifications, like adding grab bars or creating knee space under the sink,” Peters says.

And sometimes, renters are pleasantly surprised by what a landlord will do. “Some landlords are willing to negotiate or even fund some improvements if they think the person will be a good long-term tenant and they’ll make that money back,” Peters says.

“I didn’t have to pay for any of the changes I made when I moved into my apartment,” says Simon Cantos, 34, who has Ullrich congenital muscular dystrophy

“I wanted to be able to control the thermostat through my phone, and they granted that request. All I needed to do was buy [the thermostat], and they installed it.” His apartment also has low light switches that are easy to reach from a wheelchair. “The whole experience went well,” he
says. “I was very much blown away.”

Cheryl Alkon is a freelance writer based in Massachusetts.


Know Your Rights

The Fair Housing Act protects individuals from discrimination because of race, color, national origin, religion, sex, familial status and disability when they are renting, buying or securing financing for any housing.

Here are key points of the Fair Housing Act:

• Landlords may not refuse to rent based on disability.

• It is unlawful for landlords to set different terms or conditions for individuals with disabilities.

• Landlords must allow individuals with disabilities to make reasonable accommodations to a dwelling or common areas, at the renter’s expense.

• Landlords must also make reasonable accommodations in rules (for example, waiving a no-pets policy for a service dog).

• Buildings with four or more units ready for first occupancy in 1991 or later must meet certain accessibility criteria, including:

     • Accessible public and common areas

     • Doors and hallways wide enough to accommodate wheelchairs

     • Accessible light switches, electrical outlets and environmental controls

     • Reinforced bathroom walls to allow installation of grab bars

     • Kitchens and bathrooms that can be used by people in wheelchairs

     • These features are required in ground-floor units in buildings without elevators and in all units in buildings with elevators

In some places, state or local law may have more stringent standards.

If you feel your rights have been violated, contact your state fair housing agency, or file a complaint at hud.gov or by calling 800-669-9777.


Tips for Finding Accessible Housing

Most states have a fair housing agency. It may be a dedicated fair housing commission or part of the state attorney general’s office or a civil rights agency. In states without a centralized fair housing agency, look for the U.S. Department of Housing and Urban Development (HUD) office for your region, or find a local agency dedicated to fair housing, independent living or disability rights using the resources below.

Centers for Independent Living: 713-520-0232

HUD Office of Fair Housing and Equal Opportunity: 800-669-9777

National Council for Independent Living: 877-525-3400

National Fair Housing Alliance: 202-898-1661


Find Resources Where You Live

Contact the MDA National Resource Center at ResourceCenter@mdausa.org or 800-572-1717. MDA’s trained information specialists can provide one-on-one assistance with locating resources in your community. Specialists are available Monday through Friday, 8 a.m.–5:30 p.m. Central time, and are typically able to answer questions within 24 hours of a request or the next business day. 


Looking for More?

Check out Accessible Living: The Comforts of Home to learn more about how even small changes at home can make a big difference in accessibility. Also, read Fair Housing to learn about how modifications can make apartment life convenient and accessible.

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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