Home Retro-fits

Caring for a chronically ill child at home presents many emotional, financial, and physical challenges. This page will address some ways a family can adapt their home to minimize these challenges and best care for a child with special health care needs. As the scope of this topic is tremendous — and because each family’s situation is unique, varying with their home and their child’s needs — we will not attempt to cover everything here. Our primary focus will be increasing safety and mobility for children who use wheelchairs, but we welcome your comments and suggestions for future topics. Please click on the Feedback button at the top of every Portal page to email us your input.

Some home adaptations are essential for enabling a family to care for their child and keep him or her safe, while others expand the child’s independence, so he or she can get out of bed, use the toilet, move between floors, grab a snack, and get out the door without assistance.

On this page, we have organized home adaptations into three broad categories:

• Ramps/Entry – Access to the home itself is the most immediate concern for a family with a child who uses a wheelchair or other ambulatory device.
• Bathrooms – The size and design of bathrooms often present the greatest challenge within the home.
• Other rooms – Hallways, bedrooms, kitchens, garages, and other living spaces each present their own set of challenges.

For a child using a wheelchair, some homes are extremely difficult to enter or navigate. For example, a split-entry home — where the front door opens to a landing with a short flight of stairs in both directions, one up, one down — may pose an insurmountable challenge.

Families that will be caring for a child who uses a wheelchair should consider their options: Can they carry their child? Can they carry the chair? What kind of chair will they use? Does their home have room for a ramp? How might these things change over the next several years?

Wheelchairs - One key question each family must consider is which type of chair will be best for their child: a power chair or a non-motorized chair? Motorized or battery-powered chairs allow children to propel themselves forward easily, without employing their own strength or requiring outside help, but they are much heavier, and often larger, than non-motorized chairs. (See the Wheelchairs and Adapted Strollers Technology Review for more information to help with this important decision.)

Ramps - Entry ramps may take up more room than expected. Building standards state that the wheelchair ramp should not rise more than 1 inch for every 12 inches of ramp length (i.e., a ramp that rises two feet would need to be 24 feet long.) In addition, building codes often require that a 5 x 5 foot landing be installed after a specified amount of rise, in order to provide the pusher of a manual chair periodic rest. Ramps can be difficult to install in homes with small yards, such as condos, or in urban settings.

Bathrooms pose many challenges for families planning to care for a child in a wheelchair.

Size - Not only must a bathroom must be large enough for a wheelchair to enter and maneuver, but it must allow enough space for a parent or other adult to be in the room to assist the child.

Sinks - Ideally, the bathroom sink will be built without cabinets underneath it, so that the child can wheel up to the sink to wash their own hands. 2010 ADA standards state that the sink surface should be 31 inches maximum above the floor with 24 inches of knee clearance for sinks used primarily by children 6 to 12 years. (From ADA.gov)

Counter Space - Many children who battle chronic illness, or have special needs, require diapering into and throughout adolescence. Parents will need a place to change their child’s diapers — ideally in the bathroom, near running water. Changing and cleaning an older child requires a large shelf or cabinet where the caregiver can comfortably situate the child.

Toilets - For children who can use the toilet, it’s necessary to raise the level of the toilet so the child can more easily move from the chair to the toilet seat. Two options for this adaptation are a toilet riser or a pedestal at the base.

Bathing - There are various options for increasing safety and functionality in the bath or shower. The simplest and cheapest possibility is to install a handicapped shower chair in a regular bathtub or shower stall. Such chairs come equipped with straps and other supports so children who have difficulty supporting themselves don’t slide while being bathed. These supports also allow a parent (or caretaker) to focus on bathing the child, instead of on supporting him or her.

As children grow, lifting them in and out of a shower chair becomes increasingly difficult, or even impossible. One solution to this problem is a roll-in shower, which has no barrier or rise between the level of the bathroom floor and the shower floor itself, allowing a manual chair to be wheeled right into the shower.

Another solution, and a newer product, is a tub with a drawer-like cutaway in the side. The drawer pulls open so a chair can easily roll in. The drawer is then closed, sealing the tub for bathing.

No matter which options a family chooses, handrails and grab bars should be mounted throughout the bathroom to aid in mobility and safety.

Families who care for children with chronic health conditions at home, such as those who use wheelchairs, recommend a series of adaptations throughout the rest of the home as well.

Bedrooms - Medical beds and other standing equipment can take up a lot of space. It may be necessary to move the child into a larger bedroom, if one is available.

One challenge for parents as their child grows is the difficulty of lifting him or her from the bed to the wheelchair, and vice-versa. One solution is a lift–a mechanized sling attached to the ceiling above the bed. The caregiver (or the child, if he or she has sufficient strength and coordination) places the sling beneath the child. The sling then lifts the child slightly and moves him or her over to the chair and back again when needed.

Some children, such as those using ventilation or other specialized medical equipment, require virtually round-the-clock monitoring. Families who have confronted this challenge suggest putting the child’s bed in an open area near other conveniences: the kitchen, a bathroom, and perhaps a living room and television.

Kitchens - Specially designed drawers can be integrated into the kitchen. These drawers can be easily pulled out, allowing a child to access food on his or her own and providing additional independence.

Garages - In particularly cold or wet climates, families may decide to install a wheelchair ramp in the garage, so they don’t have to worry that an outdoor ramp will be wet, icy, or snow-covered. The first thing to consider if a family wishes to install a garage ramp is the size of the garage – it must be wide enough and tall enough to accommodate both the ramp and the vehicle. Vans with built-in wheelchair lifts are often taller than standard minivans or SUVs and may not easily enter an average garage.

Therapy Rooms - Many children are instructed to engage in various kinds of physical therapy, and sometimes require bulky equipment to stimulate breathing (for example). Some families are able to dedicate a room as a “therapy room;” a space that allows a child room to move, and to use and store equipment.

Doors and Floors - In newer homes, doors are generally built wide enough (xx”) to accommodate a wheelchair. However, in older homes, doors are sometimes too narrow for a wheelchair to pass through and will need to be widened.

Rugs and Carpets- A thick carpet, or thick padding under a carpet, can make wheelchair movement very difficult. Families who can build a new home will typically choose hardwood floors, tile, or very thin carpet throughout the house.

Interior Mobility, Stairways, and Furniture Placement - For young or more headstrong children, it is important to be cautious with stairs so that a child in a chair doesn’t accidently wheel down them. Parents interviewed recommend placing sturdy gates at the tops of all stairs.

Families able to build a custom home can take additional steps to improve interior mobility. They may choose an open floor plan, making it easier for a chair to maneuver. A home that is built entirely – or at least mostly – on one level is ideal, although this is significantly more costly than a multi-level home. Alternatively, a family can consider having an elevator installed so that their child can maneuver easily between floors.

Furniture should be carefully arranged, or even removed, to allow easy passage for a wheelchair.

Other Considerations:

• Added lighting will increase safety, particularly in areas such as stairways.
• Push/pull lever faucets are helpful for children with limited hand strength or dexterity.
• Side-by-side refrigerators are more accessible for children in wheelchairs than vertically arranged ones.
• Leverset entry and interior door hardware are easier to use than regular doorknobs.
• Wide swing hinges allow use of the entire doorway.
• Reinforcement of wall substructures will better support grab bars.

Adapting a home can be costly, but it is important to acknowledge the range of expenses involved. A family with plenty of resources may choose to design and build a new home, tailored to a child in a wheelchair or another specific condition. Another family might install an entry ramp, renovate their bathroom, and make a few other changes, such as improving lighting and adding necessary railings and support bars.

Families with lower incomes may struggle to make even minor changes. They may need to rely on the benevolence of organizations that help families with disabled children. The demand for the services of such groups often exceeds their capacity. (See the bottom of this page for contact information for several such groups.)

Families who have been through the process of building a custom home recommend seeking a builder with relevant experience—someone who is flexible and understands the particular challenges of designing and building a home for a child with special health care needs. Families often need to modify their plan and ask for additional changes throughout the construction process.

It is difficult to put precise numbers on these changes. However, one family that built a home specially designed for a child in a wheelchair said it cost them approximately $40,000 more than building a standard home. This family chose to live in a more remote, suburban location because their dollars would stretch further there and allow them to live in the home they truly wanted.