Guide to Other Chapters:  
Table of Contents
Introduction
1: What Is Duchenne MD?
2: Getting the Diagnosis
3: Sorting Out The White Coats
4: Your Child's Physical Needs
5: The Future—Research Points the Way
6: Your Child's Emotional Needs
7: Your Child's Education and Future
8: The Family
9: When You Need Help
10: Saying Good-Bye

General MDA Resources >
 
Chapter 8: The Family
In Chapter 8:
photo: family walking in the zoo
Preface to Chapter 8 | Your Emotions | Your Marriage | Your Other Children | Family Life, Part 1 
Family Life, Part 2 | Your Extended Family and Community, Part 1 |
Your Extended Family and Community, Part 2 | MDA HELPS: Support Groups 
Caring for the Caregiver | Opportunity for Growth 
Resources for this chapter | General MDA Resources 

FAMILY LIFE
PART 2

Modifying Your Home

photo: ranch-style house with long access ramp along front

A gently sloping ramp can be designed as part of your home's outdoor landscape.

As your son becomes more disabled, the physical layout of your home will have an impact on his mobility. Building a house from the ground up to suit his needs is the ideal solution, and ultimately it may save money. "It costs practically nothing," one man with muscular dystrophy says, "to take a set of house plans and make it accessible before construction begins, compared to making changes later."

If you shop for a pre-existing home during your son's early years, think about his future needs in making your choice. Boys with Duchenne have trouble with stairs at an early age, and a one-story home is usually much easier for anyone with mobility problems to negotiate. When he begins using a wheelchair, door widths, floor surfaces and the heights of tabletops will make a difference in his ability to get around and do things on his own.

Other things to consider are: location, nearby curb cuts, convenient public transportation, and accessible parks or recreation.

In finding or designing an accessible home, some key elements are: 36-inch doorways; wide hallways with turnaround space; reinforced mountings for grab bars in the bathroom; lower light switches and higher wall outlets; lower countertops in the kitchen and a stand-alone range top; shelves that roll out; shallow steps outdoors and later a wheelchair ramp; a roll-in shower and elevated toilet; automatic door openers; intercoms and remote control units; appliances with controls on the front; door levers instead of knobs; push-on or heat-sensitive faucets; low-pile carpet, nonskid tiles or concrete floors.

photo: elevated toilet seat

Some simple changes can make your home more accessible. From top: an elevated toilet seat; a roll-in shower with shower chair; lower wall switches and door levers; a dresser at wheelchair height.


photo: roll-in shower

photo: man uses dresser at wheelchair height

photo: man demonstrates door lever and switches at appropriate height

Many people can't build new homes because of financial constraints or other factors. By assessing your needs and planning carefully, you can adapt a home at a reasonable cost. Here are some suggestions to take the sting out of expensive modifications:

  • Rather than widening exterior doorways, you can add two inches of clearance by using special door hinges that allow the door to swing clear of the door jamb.

  • Ask friends and family members with building skills to provide labor for some projects.

  • Make one or two adaptations at a time to spread the costs over several years. Start with the most essential modifications.

  • Shop around for the best prices, including flea markets and independent contractors.

  • When possible, use over-the-counter appliances or equipment rather than custom building. For instance, instead of adding a complete set of costly specialty cabinets, a lazy Susan might bring kitchen utensils or school supplies within reach.

  • Instead of installing new shelving or replacing furniture, remove the doors of cabinets, closets or chests for access.

  • For more ideas, ask members of your MDA support group.

If you're renting a house or apartment, the law allows you to make reasonable modifications. You may have to do so at your own expense, and your landlord may require you to restore the place to its original condition before you move out.

Other questions to consider if you or your son are renting an apartment:

  • Is it a safe location?

  • Will snow and ice be cleared from sidewalks and entrances regularly in wintertime? Are sidewalks kept free of trash and toys that can interfere with walking?

  • Are laundry facilities and recreation areas also accessible? Landlords must make reasonable accommodations for all people to use common areas such as lobbies, laundry facilities, clubhouses and other recreational areas, unless doing so results in undue financial hardships.

  • Are service animals permitted, even if pets aren't?

  • Do elevators break down frequently?

Making your home as accessible as possible can make the whole family more comfortable, reduce the physical demands of caregiving and allow you to focus on solving accessibility problems in the rest of the community.

Next... Your Extended Family and Community, Part 1 >