T he ability to participate in all aspects of our society is something that many of us take for granted. But, for individuals with disabilities, there are often barriers to such basic things as transportation, employment, education, technologies, recreation, accommodations, government programs and commercial establishments. Design changes and modifications allow those with disabilities access and, therefore, promote inclusion and independence within our communities.
These are changes that make learning or work more manageable for a person with a disability. Some examples are changes in the amount of material that is presented at one time or a change in the environment such as the lighting, the desk or chair, or the computer keyboard.
This describes a building or facility that can be approached, entered and used by a person with physical disabilities.There are a number of low-cost, low-tech accessibility solutions that would have immediate benefits.
My son, Daniel, was born with a rare genetic condition called Rubinstein-Taybi Syndrome. Each child with this syndrome is affected physically, medically and cognitively. Universally, this syndrome results in broad, flat thumbs, which can impact fine motor and dexterity; mycrocephaly and short stature. In addition, my son required open heart surgery to repair several heart defects; surgery to correct hypospadias and undescended testicles; has several chronic GI issues for which he is on medication; and is non-verbal. The impact of RTS is broad and results in several access issues for him. Because of his broad thumbs and limited dexterity, he cannot button, zip, buckle or tie shoes; so to dress and undress independently, he needs to wear elastic waist pants, pull over shirts (no buttons), no belts and no shoelaces. Because of his broad thumbs and limited dexterity, his daily living skills are quite low; to access personal hygiene, he needs direct physical assistance to brush teeth, bathe,shave and use the bathroom. Because he is non verbal, he needs access to a communication device to express himself. Because of his awkward gait (an almost universal trait for this syndrome) and sensory and gravitational issues, he requires direct assistance while walking down stairs, on inclined ramps and on uneven surfaces; and sleeps in the master bedroom on the main floor of our home to avoid having to use the stairs. As he gets older, I imagine that his access issues will grow, particularly in the areas of independent living and community access.
When our first daughter, Alli, was born, life, as we knew it, changed. As with every new mother, adjustments to schedules and routines were made. It wasn’t long before we realized more changes were needed. When Alli was a year old we had her seizures under control and life was manageable. But as months went by and developmental milestones went unmet, her needs and therapy increased. By the age of 2, we knew Alli would never walk. Our house was not handicapped accessible and could not be modified. We started the house hunt. Finding a one level house with a pool for therapy, was a much larger challenge than I had ever imagined. We finally found and purchased a house that, with modifications, would work. We installed a ramp to get to the pool and one to the front door. We added on a built-in garage for protection from the cold and heat. Our doorways were also widened, and a handicapped accessible/roll-in shower was added beside her bedroom. We are very fortunate that our house fits our daily needs and is a home we hope to be in for years to come.
After twelve years of not having a reasonable accommodation made to our home, it was time for my daughter, who uses forearm crutches, to be allowed full enjoyment of living in our thirty-nine year old home.
When Candice was fifteen, she wanted to be independent and she figured out a way to get in and out of the tub without assistance using the handles on the shower door. The shower door was not very stable and after using the handles on the shower door over and over, she fell in the tub. Even though she was not injured, it was very clear that our home needed some modifications for accessibility. When Candice was seventeen, it became clear that even though our carport door entrance only had one step it was not very accessible to accommodate her physical disability. When Candice returned from being transported via car, she would leave her arm crutches in the car. It was evident that she wanted to be independent and she had figured out a way to get from the car to the step and into the door without using the crutches.
By now it was “crystal” clear that our home needed some modifications to make it accessible for Candice. As a divorced, single parent who works part-time, there was not any extra money to pay for building modifications so we needed to find the resources available to help make these reasonable accommodations become realities. The first support we added were grab bars in our bathroom with funding provided by Disability Connections in Macon. The second support was the construction of a ramp for our carport door entrance. Family Support Services in Dublin provided the funding for the construction of the ramp. The decision to make the ramp a built-in feature of our home proves to be a good thing for everyone in my family. The construction of the ramp not only improved accessibility for Candice, but it made accessibility easier for her grandmother who has senile dementia and her aunt who has visual impairments.
When our son, Ishan, was born, I did not fathom the extent to which our lives, much less our physical environment and our spaces, would change. In the next few years, even as we got a window into all our lives in the future as the extent of his disabilities became known, it wasn’t fully apparent. However, we never did look past a single-level ranch home when buying a house, as we strongly felt that no space in the house should be inaccessible to our son.
As Ishan grows, our spaces slowly change. We need to allocate more space to store his wheels – wheelchair, accessible van, three-wheeled bike, walker and stroller. Spaces, once homogenous and free flowing, have been cordoned off by gates and fences. Some spaces and access to those spaces will need to change.
Some of these changes are major and may be expensive to implement. Others require minor effort, but immediately make all our lives easier. For instance, getting an accessible tag for our vehicles enabled us to park at accessible stalls. Small ramps made access into the house through the front door and the garage easier. In the case of the garage, it is just a movable wooden plank.
The first major remodeling we have had to do is converting the bathtub in his bathroom into a tiled shower. We had to make sure every detail and dimension was correct for the project to fully work. One of the challenges was the height of the curb to contain water, yet allow easy maneuvering of Ishan’s bathchair. We did not install grab-bars yet, as we do not yet know the best location for them. However, we provided hard blocking in all walls to allow flexibility of location. The entire bathroom remodeling is expensive, hence we decided to do the project piecemeal, as our finances and time allow.
The next project we will undertake is making the lavatory accessible so that Ishan can pull his wheelchair up to wash up. Expenses that are incurred in making spaces accessible qualify as medical expenses and are thus tax-deductible to the extent the tax law allows.
When we decided to move to Georgia we knew that our home would have to be made accessible so Joshua could learn to be independent. Since my husband and I didn’t want to get into another mortgage we decided to purchase a repo-modular home. After looking for weeks, we walked into the one in Claxton, Georgia and I knew this was it. It had huge openings, lots of rooms that could be changed. It also had lots of windows which was one of my requirements.
In the beginning, Joshua wanted the bedroom at the end of the hallway. Why, I had no idea, but, to him, going down the long hall is like driving down a long and straight road. The bedroom at that time was fine, since his size wasn’t an issue yet.
As he grew, we decided that bathing in the tub was not working. Being blessed with a handyman husband, I was able to tell him what we needed to do. First thing, we would need for Joshua to move to the front bedroom because it had an adjacent bonus room which was great for his computer and Xbox set up. Then we had to cut through the walls and make the doors big enough to get him into the bathroom. In the bathroom, we had to remove the tub, take out the closet and move the toilet and the sink. Then we had to figure out how to make it a shower and easy access for a 6’2 young man in a shower chair. My husband, Jack loves challenges and this was going to be one! He tore out the tub and the wallboard, tore up the vinyl flooring, removed the existing toilet, cabinet, and sink, and took out the walls in one area. We cut the door opening at the bathroom to match Joshua’s bedroom door, so that he would be able to back into the room easily. After looking everywhere for bathroom kits, which were very expensive, we decided to put up new walls and push the bathroom back into the smaller room and put the toilet over more toward the sink and then get a new smaller cabinet. Jack went to Lowes, found the wall board that they put in houses and cut it to the correct size. We chose a ceramic tile to go into the shower and poured the concrete so that it angled to the drain in the back of the shower. We took the wheelchair and shower chair and Joshua did a trial run. Once it was perfect, we finished with a tile cream to seal it. We then bought a new shower head with a removable arm to make it easier for showering. Now that the bathroom is complete, it definitely gets alot of wear and tear! Joshua loves that he can drive from the front of the house through his bedroom to the bathroom and take care of his business!
We had to figure out how to make our home accessible for Matthew, who is blind. One of the first things we decided to do in adapting our home to make it more accessible was to give away or sell our coffee tables and end tables. We needed a lot of open spaces so Matthew wouldn’t bump into sharp edges of tables or other furniture. So, we also adapted our home by having chairs and sofas along the walls and allowing for lots of open space. The idea is to make a clear path for Matthew to walk or “run”, as the case might be, while siblings chase him or he is chasing them. We decided against a kitchen island because, again, we were concerned with having possible obstructions in Matthew’s path to the refrigerator, pantry, sink or dishwasher. So after learning his way around the house, he easily goes to the bathroom, kitchen, his bedroom and other rooms without any problems. One thing that helped us in planning to use an open floor, uncluttered design in our house was what we saw happen when Matthew went to visit relatives or friends. He was often bumping into their tables, chairs, sofas, and other furniture and it was difficult for him to walk around independently. So, he would just sit and not move too far. Well, we surely didn’t want him just to sit around at home. Plus we found, when his siblings were very young, we didn’t have to worry about them bumping into sharp edges either. The adaptations we made to our home for Matthew have benefitted his brothers and sisters and other young children who come to our home.