Children and adults with cerebral palsy live with disabilities for their entire lives, but these do not have to limit them. It starts in the home, where families can make modifications that help a disabled child do anything that any other child would typically do, from being able to get to any part of the house to being able to wash his own hands or brush his teeth.
Today, most advocates for people with disabilities describe a concept a home, as well as other environments, having barrier-free accessibility. This means that a person is only disabled to the extent that there are barriers. If there are no barriers, such as a ramp instead of stairs for someone who uses a wheelchair, then the disability disappears. All parents want their children to have opportunities, and for those with cerebral palsy, that means living barrier-free. While parents cannot control all environments, they can control the home and eliminate its barriers with modifications.
What Are Home Modifications?
Home modifications are any changes made to the home that are done to remove the environmental barriers that limit someone with disabilities. Having barriers in the home limits a child from doing what other children are able to do, they limit a child’s ability to be independent, and they encourage isolation and lack of participation. Any modifications that can remove these barriers, improve a child’s life in all of these ways.
Examples of home modifications may include adding a ramp to the front of a home to allow for accessibility with a wheelchair or walker, a lift for interior stairs, a lowered sink in the bathroom, or even just spacing furniture in such a way that someone with a mobility device can get around easily.
Physical Modifications for Homes
For a child with cerebral palsy, physical modifications in the home are crucial for eliminating barriers. Most children with this condition experience some degree of physical disability, from being unable to walk at all to needing assistance with walking and other movements. A home needs to be as accessible to this child as any other in the home and that means some physical modifications may need to be constructed.
Some of these physical modifications may be simple, like using rugs on hard floors with no-slip backings to prevent slips and falls. They may also be more complicated, such as installing a lighting system that signals the doorbell or phone has rung for a child with hearing limitations. Here are some of the important considerations you need to make when modifying your home for a disabled child:
- Access into and out of the home
- Access throughout the home, which may mean no steps or devices to go up and down steps
- Hallways and doorways that are sufficiently wide
- Easy access to at least one bathroom and the ability to use all parts of the bathroom
- Hard floors or low-pile carpeting
- Access to outlets and light switches
- The ability to open and close windows
- Grab bars with reinforced walls
- Lever handles on doors or automatic openers
- Appropriate counter height in kitchen
Modifications and Legal Housing Rights
The Civil Rights Act of 1968 was amended in 1988 to include language that would prohibit discrimination in housing against people with disabilities. This meant that, after 1991, it became illegal to construct a multifamily dwelling, like an apartment building, that was inaccessible to someone with a disability. In 1991 the Fair Housing Act Guidelines were issued by the Department of Housing and Urban Development. This helped outline more specifically what these kinds of buildings needed to include to be considered accessible:
- Access to common areas.
- Kitchens and bathrooms usable for someone with a disability
- Access to the building from the outside
- Access into a unit
- Doors wide enough for wheelchairs
- Outlets, light switches, and other controls placed in accessible locations
- Walls reinforced to hold grab bars
Because of these federal laws and guidelines, parents of children with disabilities like cerebral palsy have a right to fair housing. You have a right to not be discriminated against when renting a home, which means you can’t be turned down because of your child’s disability, charged more because of it, or be offered a unit that does not meet the Fair Housing Act Guidelines.
Universal design is the concept that buildings and other environments, and even products, should be designed with universal access in mind. This means designing products and spaces that are accessible and usable by someone without a disability, but also by anyone with any type of disability or even age-related limitations. The term was coined and the idea has been pushed by architect Ronald L. Mace. In addition to making everything accessible, the idea of universal design is to do so while also designing spaces and products that also consider aesthetics. In other words, they are usable and accessible, but also look nice.
Universal design is based on several principles that families can use to help guide the modifications they make to their homes for universal access:
- Equitable use means that the design of a space is safely and effectively usable by all people, disabled or not.
- Spaces and products should be flexible and allow for different users to vary how they use them.
- Designs should be as simple as possible and intuitive. Unneeded complexity should always be eliminated.
- Designs should contain built-in safety feature to minimize harm from accidents.
- Designs need to be easily understood by people of all ability levels.
- Environments should be designed with enough space and products of the appropriate size to allow anyone to reach and use it.
- Designs should require minimal effort to operate a product or use a space.
Financing Home Modifications
For many parents, having a child with cerebral palsy comes with costs that they never imagined. These include home modifications, and they can add up quickly. You can privately fund the modifications with your own money or with loans, but there are also sources of funding, such as grants and government funding that can help with these costs. There are also property improvement loans funded through the government, which are low-cost loans used for home renovations to accommodate a disabled person. There also may be tax deductions available for these kinds of home improvements.
Some examples of sources of financial resources for making disability-related home modifications include: the Federal Housing Administration, Access Home Modification Program, the Center for Accessible Housing, the United Cerebral Palsy Association, and Centers for Independent Living. You can also check with your local and state governments and community organizations to seek funding for your home modifications.
Making changes to your home means giving your child access, opportunity, and independence. These in turn will provide her with greater self-confidence, inclusiveness, self-esteem, and uncountable additional benefits. To make changes may seem like a lot of work, but the benefits are overwhelming and necessary.