I often get calls and emails from other occupational therapists (OTs) about how I got started in home modifications and/or universal design. I figured I’d write an article about my experience in hopes to help others understand the realities in this area of practice, as well as the progress that continues to be made in making homes and spaces more user-friendly for all individuals.
How did you know you wanted to be an OT?
It started when I was finishing my senior year at Bridgewater College in Virginia. I loved the small school community in a small town and knew that I’d have to continue to graduate school to find a job related to my major, Allied Health Professions.
I graduated in the spring of 2005 and decided to take a year off to figure out what I wanted to do next. I knew I wanted to do something in the medical field, but medical school or nursing just didn’t seem like it was a good fit. I started looking into Physical Therapy (PT) and Occupational Therapy (OT) and struggled to decide which direction I should take.
During this time I was a personal aide for a husband and wife and cared for the husband who had a stroke. I would take him to his therapy appointments and do side trips to Blockbuster, Starbucks, and Dunkin’ Donuts for his movie and iced coffee fix. We often encountered bathrooms that he couldn’t use or public places that were difficult to navigate. During one of his appointments in Washington DC, at the National Rehabilitation Hospital, I had an opportunity to shadow an OT. The facility was amazing and patients had the opportunity to practice everyday tasks in environments they’d experience in real life like home, grocery store, or pumping your gas. After a little tour, I had a chance to meet a woman who had a traumatic injury and was working on brushing her hair. She said she was so excited because she had finally figured out how to do it on her own with the help of her OT.
That was a pivotal moment for me. I knew right then that I wanted to be an OT to help others with daily tasks that many of us take for granted.
I applied to James Madison University’s Occupational Therapy Program and started in the summer of 2006. Throughout my time there I learned so much and couldn’t wait to start practicing in the clinic. In December 2008, I graduated with a Master’s in Occupational Therapy and headed to North Carolina with my husband Scott Pruett as he was starting grad school at UNC Greensboro.
My first job and a glimpse into home modifications
I started my first job was at Moses H. Cone Memorial Hospital, on the spinal cord injury team in their Inpatient Rehabilitation Center. I vividly remember doing home evaluations with several clients and being excited to go to their home to make sure it was safe and set up well for them upon discharge.
Even though we were able to help them go home safely in a short amount of time, the reality was that we were only able to suggest minimal and temporary modifications like equipment recommendations or provide handouts on how to build a ramp. They had to find someone to make the ramp as we didn’t have the time or network to easily connect with local builders to make modifications. Forget major modifications that required a bathroom remodel! Patients were worried more about medical bills and getting home and didn’t have the mental capacity to think about remodeling their home to be functional.
In hindsight, it felt like we were just putting a bandaid on the home for them to use the space temporarily until they got better. Yet, what if their condition was long term? They were basically stuck in a semi-functional home. Many people found themselves limited in where they went in the house and what they could do as they couldn’t reach all areas of the home. Usually, the most important areas to address were getting inside the home, having equipment in the bathroom, and access to a bed or bedroom.
One memorable patient of mine lived alone, and his only option was a hospital bed in his living room, as all bedrooms were upstairs. Until he regained strength to walk and do steps through home health and outpatient therapy, he would have to wash up in the half bath on the main floor. We had to get creative with how he got in the bathroom as the small door that didn’t allow clearance for a wheelchair.
This common situation led me to take a continuing education class on home modifications and to start learning more about how OTs can get into this niche of practice. It was always in the back of my mind, but life happened and we ended up moving to Crested Butte, Colorado for four months for my husband to do his graduate school internship at The Adaptive Sports Center. I took some time off from working in a clinic to review lodging facilities in the area and created a resource for visitors to know what homes and rooms are available that had accessible features. It was so fun seeing the different properties and creating something others could use to make their stay away from home more comfortable.
Discovering Universal Design
During our time in Colorado, I was researching the ADA and accessibility options and came across the design process Universal Design (UD). It was such an appealing design process for me. Could homes be functional and look “normal?” No one wants a hodgepodge of medical equipment added to a space. Being married to a husband who has had a spinal cord injury for 19+ years, I knew that someday we’d want to build a home like this. From my professional experience, I also knew that UD would benefit so many people with temporary conditions and aging. UD can also play a major role in transportation, urban development, community spaces, and activities. The options were endless, and the need was obvious [to us].
Jumping into entrepreneurship
After our time in Colorado, Scott and I drove back east and decided to settle close to family and friends in Harrisonburg, Virginia. At that point we decided to start our own consulting business, Universal Design Partners, in an effort to partner with other organizations to help put universal design features into homes and community spaces. Our goal was to collaborate with other service providers to help do the work in homes of individuals who were wanting to make their homes more functional.
As a starry-eyed new entrepreneur, I knew I had skills to make a difference and saw so many homes in our community that would benefit from safer features. Not to mention all the new homes being built that could be designed and built with universally designed features that would benefit people in any life situation. I just needed to collaborate with someone to put those recommendations into people’s homes.
Barriers to Consulting (a learning experience)
Well, reality slowly set in as we started connecting with others locally and online. I’m not going to sugarcoat this, as it has been a learning experience. While frustrating, these discoveries have really helped us understand the market and give us a plan for the current stage in our efforts.
- “What the heck is OT?” For starters, people really don’t know what OT is and how it is different than PT, nursing, or a job coach. We have to explain what an occupational therapist does and the role we have in the lives of others. Second, we had to link my profession to how I’d be a beneficial partner in collaboration in home design or home building. This is difficult because most people only see OTs working in a medical setting. It’s a lot for people to wrap their brain around. I still get questions about what I do and if I’m going to use my OT degree. *Sigh*
- Terminology: UD, Visitability, Better Living Design, Easy Living Homes, Accessible Design, Aging-in-Place, Handicapped Design, Inclusive Design… ahhhhh! There are so many terms out there that basically mean the same thing or something similar. These terms really confuse consumers, and when service providers are using them interchangeably without the knowledge of their differences, confusion leads to designs being labeled incorrectly or people thinking that UD is designing just for people who have a mobility impairment.
- Knowledge and Bias: Everyone has different types and levels of education and experiences. Professional organizations are creating training and certifications to help people fill knowledge gaps. That’s great, but is it enough to make people think they can do everything on their own? OTs spend years in school learning about how people move and use their environment, plus how disease impacts people over time. Builders and designers spend years learning their trade and the science behind design. When we try to dabble in the other person’s profession the result is both sets of professionals trying to learn enough about the other professional’s skills to get by. Outcomes are often less than ideal for clients when someone tries to take the lead on limited knowledge. It’s okay to not know everything and collaborate with others.
- Collaboration isn’t common: We’ve met with some people who loved the idea of creating places for others who are aging and looking to downsize into something that would be functional for as long as possible, but they really didn’t want to work together. We also learned that there’s already tension in the building industry between professions! This makes OT consultants like me really struggle to get a foot in the door! Regardless, I did have a few successful collaboration opportunities, but I found that I had to stick to my guns about why some features need to be included for increased function. Contractors don’t see things the same way as us OTs, and it’s okay. Both parties just need to be open to the other person’s reasoning and find ways to collaborate together.
- Codes are a minimum standard: Others told us our services weren’t needed because the codes already dictated what’s needed for accessibility. Yes, when these features when implemented well it can make things more functional, but they aren’t often implemented well. We regularly say that there’s a big difference between legal accessibility and functional accessibility. First, there is no such thing as an “ADA home.” The ADA was not written for private residential single-family homes. Second, until people experience disability or an injury themselves or through a friend/family member, they don’t often understand how frustrating the minimum can be. We’ve toured homes that were built with “accessible features” that had major oversights affecting how functional they actually were. Again… the way it’s typically done isn’t always the most functional way, especially if important features are missed.
- “How do you make money?” This is a big issue. Our contributions to projects both raised prices for homeowners and cut the profit for contractors. Many consumers are used to health insurance covering services by an OT, but insurance doesn’t typically cover any modifications, just an evaluation. Construction costs are on the customer, and many individuals who need home modifications can’t afford them. Some OTs have been able to figure out how to get paid through insurance or other sources, but that’s one of the biggest hurdles thus far. I felt like if I were to be an OT on an already established design team, I’d have a better chance at seeing my skills fit better within an already established process of design.
- Not sure where OTs fit: I was typically called onto projects at the beginning, or was asked to give my recommendations on the final product. Without a consistent, persistent presence on the “team,” my suggestions for what’s functional for an individual were often changed to save money, or because they weren’t “how we do things.” This area of OT isn’t even in the typical therapy referral process. I felt like my best place to connect with people was after they’ve been living in their home for a while and are realizing that things aren’t working well. This is typically a long time after someone has been in a hospital or finished therapy.
- Consumer buy-in: Thankfully we’re seeing an upward trend of many people wanting to stay in their homes longer as they age. That’s a promising push in the market, but there’s still a sense of denial that disability or age will actually affect them, just “those other people.” Most homeowners aren’t being proactive, especially if they think that UD is just for people with disabilities. One thing that’s often overlooked is the social component of homes that can accommodate visitors (family and friends). Many people struggle to get into “typical” homes, not to mention being able to use the bathroom or stay for the night.
As we worked on various projects, I realized that it would be difficult to make an existing home truly universally designed, as comprises always would need to be made with existing designs, and costs would be very high. Plus, most people don’t want to live in a construction zone. Many of my jobs ended up being simpler home modifications, like making recommendations to add features like stairlifts or wooden ramps. While this was helpful for many, I couldn’t get the idea out of my head that homes should just be designed better and more functional from the start.
Despite these challenges, we did make a lot of great connections. We worked on a neat project to create an inclusive tourism guide for the Republic of Georgia and created the site SafeScore.org to provide information about what’s possible in creating a universally-designed home. The checklists and quick assessments have been surprisingly popular to help people understand what’s needed for universal design, especially in the context of safety.
Moving to a nonprofit business model
Even though the need is everywhere, we ran into so many unexpected barriers that we couldn’t make a full time living with our consulting business. We decided to shut down the consulting side of our business and switch to a nonprofit to focus on our own designs through a collaborative process. If we couldn’t easily make homes more functional after they were already built (even though we really wanted to), we could try and make a difference in the way new homes were designed. We also decided that we needed to draw a line in the sand and either do home modifications (fixing existing homes that weren’t designed with accessibility in mind) or using the universal design process (designing new homes that were functional from the start).
This was difficult for me, as I know my skills can benefit people in their current homes, but to really do universal design well, we have to start from scratch.
It’s not that I don’t think we (OTs) can help people in their current homes, we just struggled to figure out the best way to make it happen. However, there are OTs out there who are working toward making businesses out of home modifications and renovating spaces. If you’re interested in learning more, check out the Home Modification Occupational Therapy Alliance (HMOTA) and get connected! This is still a major need in our communities!
The Universal Design Project
We shut the doors to our consulting business in 2016 and started The Universal Design Project to focus our work on new home designs and plans for community activities that will be available to the public once the design has gone through our collaborative design process.
Now that we’re a nonprofit, we can apply for grants and fundraise. This helps ease the financial struggle of getting important people at the table (healthcare providers, designers, and people with disabilities). We hope to create better, more affordable, functional designs to ultimately provide more [universally] functional options than what’s available today. Part of this is so we can show people why UD makes a difference. Until then it’s just a concept that people generally have a difficult time understanding, no matter how much we talk about it.
It’s certainly been a long road to come to this point as we’re trying to solve a big problem that’s not easily solved! Look around your neighborhood… how many homes can easily be entered without steps? That’s the first major hurdle. I did a quick search for properties this past weekend and the options are very limited for something you can move into without any modifications. Creating change is only possible by working together and educating people about the true meaning of universal design.