June 1997

Environmental Issues: Barriers

Physical Disability vs Physical Barriers in the Environment

Which Is More Disabling?

by Shoshana Shamberg, OTR/lL and Aaron Shamberg, MLA
Abilities Occupational Therapy Services, Inc and Home Safety Innovations

What happens when a 39-year-old man with paraplegia is discharged from a rehabilitation center to his home and community?

This article will describe two hypothetical scenarios in the case of a man named Steve Johnson as he returns to his home, family and business.

Profile Of A Businessman

Steve Johnson is married to Joan and has 3 children, ranging in age from 4 years to 10 years old. Steve and Joan are co-owners of a landscaping company in a suburban neighborhood near Baltimore, MD. Joan is a landscape architect and Steve a landscape contractor. They have 20 employees on their staff, and a business office connected to a greenhouse and tree nursery. They have been married for 15 years. Two years ago, they purchased their dream house, a 75-year-old farm house located on 10 acres of land. They have been waiting for the summer, when business will pick up, to carry out major renovations. In a recent skiing accident, Steve sustained a spinal cord injury. Now he has suddenly become disabled: paralyzed from the waist down and a permanent wheechair user.

The Rehabilitation Center's Work

In Steve's rehabilitation work, he and professionals worked together to plan his discharge to the home and community. They were aware that their goal of maximizing his independence and quality of life might be affected by a variety of external factors, physical disability being only one of many. It might be that his home and community environments would be more disabling than his medical and physical status, presenting seemingly insurmountable physical and psychosocial barriers

In the rehabilitation center, Steve had no time to feel sorry for himself. Right from the beginning, his days were filled with therapy and activities to maximize his independence. The wheelchair was awkward at first, but it gradually became a part of his everyday existence. Although the center was totally wheelchair accessible, the therapists provided challenges to help him face obstacles and solve problems. Steve had to relearn how to perform daily activities such as dressing, bathing, grooming, toileting, transferring himself in and out of his wheelchair, cooking light meals in the rehab kitchen, and so on. Although Steve was initially depressed and his stamina was low, each day he felt increasingly empowered by his ability to take care of his needs. He was assured that he would eventually return to his work in the landscaping business. He realized, however, that he may have to reorganize some of his duties to accommodate his disability and some of the mobility limitations that he may not be able to overcome. That would be just one of the many challenges he would probably face. Still, he felt lucky. From his waist up, he was perfectly healthy and able to do most things on his own--at least, while he was in the rehab center. Altogether, Steve spent two months in the rehabilitation center after being admitted following his skiing accident.

Now we will present two very different post-discharge scenarios, with two very different outcomes. Let us see which scenario achieves desired rehabilitation goals.

The Standard Scenario

Approximately two weeks prior to Steve's planned discharge, his wife, Joan, provided photographs of their farm house to his rehabilitation team in order to get ideas for accessibility issues. This rehabilitation team consisted of a social worker, a occupational therapist, a physical therapist, a rehab nurse, and a physician. The team met with Steve and his wife to discuss medical, psychosocial, and caregiving issues. They discussed suggestions for equipment to maximize Steve's ability to bathe, toilet, and move around the inside and outside of his home.

Suggestions included the following: a ramped entrance; a commode for toileting, since the bathroom is not wheelchair accessible and is located at the end of a long hallway opposite the master bedroom; sponge bathing until modifications could be made; a stairglide or wheelchair stairlift to connect the first and second floors, where the bedrooms are located; and creating an accessible sink in the kitchen by removing the doors underneath. Some adaptive equipment to assist in lower extremity dressing was provided, and training was given to both Steve and his wife, who would be acting as his personal care aide.

Homecare OT and PT were recommended for at least four weeks following discharge, two to three times per week, to maximize carryover of rehabilitation progress. Driver training was also recommended to teach Steve to drive a car with adapted controls. Unfortunately, Steve lives over an hour from the rehabilitation center. Therefore, a home visit by his rehabilitation therapist to conduct an environmental assessment was not permitted. This would have to be covered by homecare therapy once Steve was discharged to his home.

Steve was excited about returning home to his family, friends and business associates. And he was also frightened. He had always been athletic and prided himself on his health, engaging in a regular regime of exercise and healthy eating. Now he was a person with a disability. As for Joan, she drove Steve home with a great deal of apprehension. Besides everything else, Steve's health emergency had resulted in their finances being very tight. Once home, Steve quickly realized that the independence of the rehab center was a thing of the past.

Steve's friends had built him a makeshift ramp, but it was too steep for him to navigate himself, and two people had to wheel the chair up to the door. The entrance doorway threshold was 1" high, with sharp edges. It was impossible to get the chair over without assistance. As Steve's friends joked about his inability to use their ramp, his children stared at their dad, not knowing how to approach him. He smiled sheepishly at them, feeling a creeping passivity. A hospital bed was set up in the dining room with an Indian print bedspread as a curtain doorway. A commode was set up by the bed for toileting, and Joan proudly announced the purchase of a portable shower unit that could be set up in the dining room for bathing.

Steve had no privacy, a great deal of noise, and a hospital-like atmosphere. This was not the empowering independence that he had imagined. The narrow hallways and doorways made it impossible for Steve to access such crucial areas as the kitchen and bathroom. The stairs and steep ramp prevented him from independently accessing other parts of house and the outside. Home care OT and PT maximized his ability to perform selfcare and muscle strength only within a very limited environment: the rehabilitation center and two rooms of his nine room home. This was certainly not the lifestyle he had imagined while awaiting discharge home.

The environmental barriers compounded the frustration of Steve's disability and new way of life--not just for Steve, but for each member of his family and social support network. It would take Steve time to sort out all the confusion, frustration, and insurmountable barriers that seemed to be his fate now that he was home.

A multitude of questions arose:

How would Steve and Joan get the money to renovate this old place in order to make it liveable for a wheelchair user? Would they be forced to move from their dream house with its antiquated charm?

And regarding the business: Would Steve have the strength and ability to get to the office and work again? Would he be forced to set up a home office because he couldn't even get into the office doorway and bathroom?

Steve and his wife looked to the future with frustration and uncertainty, not knowing whether they would ever again feel "normal."

An Alternative Scenario:

Let us consider an alternative scenario.

In this scenario, three weeks prior to Steve's discharge, a referral was made by his rehabilitation team to an occupational therapist specially trained in accessible assessment, design, construction and assistive technology. The accessibility consultant provided the team with a variety of funding resources to pay for any modifications and equipment not covered by Steve's medical insurance. These included grants, special loans and creative home equity financing. Steve's social worker was able to obtain the necessary documentation needed to submit applications for funding within a couple of days. It would then take between 2 and 6 weeks for processing.

The accessibility consultant attended a team meeting within two days of the initial referral. This meeting was attended by Joan. The team watched video tapes of the home environment, both exterior and interior. Medical information was provided, as well as goals and concerns expressed by the patient, his wife and rehabilitation team members. Three days later, the OT Accessibility Consultant visited Steve's home and conducted a thorough environmental assessment of each area of the home environment.

This evaluation targeted environmental barriers and problems in each of the following areas: parking, driveway, walkways, entrances, type of lighting, door hardware, hallways, floor surfaces, space planning in each room, type of furniture, kitchen/bathroom layout and use of appliances and fixtures, stairs, bedrooms, basement, safety, utilities, security, environmental controls, adaptive equipment, home and lawn maintenance, and leisure space, and so forth. Where environmental demands exceeded Steve's functional abilities, a list of barriers and problems was generated and organized by area. Recommendations to remedy these problems generated a list of solutions that included specialized equipment, rearranging the environment, and structural alteration of the environment. These recommendations were formulated to address adaptability, the possibility of Steve's changing status, and the need to create an environment that Steve's entire family could function in comfortably.

A building contractor knowledgeable in accessible design and remodeling visited the home and provided prices for the installation of equipment and for each recommendation. The remodeling focused on the most functional design with a non-medical look for use by both persons with and without disabilities. This would increase the beauty and the market value of their home. Steve and Joan prioritized these recommendations according to immediate needs for access to perform crucial selfcare and daily activities within their financial budget. Once Steve was home and functioning in the environment, other recommendations could be phased in over time as money became available.

At the same time, the OT accessibility consultant visited Steve and Joan's business office to perform an environmental evaluation. Federal legislation--Title III of The American with Disabilities Act--requires that all public accommodations be accessible to people with disabilities. Steve had wanted to make the necessary renovations this summer, and now the process was somewhat accelerated.

Since the office was located on one floor and in a very open interior space, very few major modifications had to be made.

Two accessible parking spaces were designated within easy access of the entrance. The entrance was ramped and the doorway widened. An automatic door opener was also installed, even though not legally required. Office space was rearranged to provide an unobstructed route throughout the office, so that Steve could visit each employee's workstation. The existing unisex bathroom was remodeled by enlarging the space, widening the doorway, installing levered door handles and faucet controls, an accessible height sink with an open bottom, an automatic hand dryer and soap dispenser, paper towel dispenser, a high rise toilet with a flusher extension and grab bars, accessible height light switches, and so forth. Steve's top desk drawer was removed, providing adequate access for his wheelchair.

An intercom system allowed him to communicate with his employees to avoid unnecessary traveling in his wheelchair.

Thus, upon Steve's return to his home, he was comfortable, self-reliant and able to immediately integrate his rehabilitation skills into his day-to-day life. With construction begun before Steve's discharge, he could immediately access the environment in the most integrated manner and use such crucial areas as the entrances, bathroom and bedrooms, and move around the outside and inside of the house. The homecare therapists were able to carry over the progress and skills achieved in the rehabilitation center without dealing with the frustrations of unnecessary environmental barriers and inadequate or inappropriate equipment.

As the reader can see, this scenario--an integrated rehabilitation team approach--is the optimal approach.

The Occupational Therapy Accessibility Evaluation

It should be noted that the need for a comprehensive and specialized Occupational Therapy Accessibility Evaluation is usually only needed in the initial phase, upon discharge or before construction begins. If necessary, it can be updated over time as functional abilities increase or decrease and the need for caregiver assistance diminishes or increases. This depends upon the disability, prognosis and recovery process of the patient. The accessibility consultant can also provide extensive product information from a variety of sources that are carefully researched using information from the design, building and medical industry. Architectural plans can also be reviewed to insure that the design provided by the interior designer, architect, or building contractor are truly accessible and useable for the patient before construction begins. This eliminates the need for costly structural changes once construction has begun and unforeseen problems may arise. The OT accessibility consultant can also provide training to the patient and/or caregivers in the use of any specialized modifications and equipment to insure that maximum safety and independence are achieved.

Overcoming Obstacles

For many patients, the obstacles to achieving this desirable service delivery are lack of knowledge of the necessary resources and funding mechanisms, as well as a lack of specially trained accessibility consultants. Fragmentation of service delivery is also a major issue in providing the most cost-effective and efficient process. The problems are not too difficult to remedy when the client's desires and needs determine the way that service is organized. Networking professionals, communication and information are the key to successful rehabilitation and maximum independence and quality of life for our patients.

About the Authors:

Aaron and Shoshana Shamberg are accessibility consultants in the Baltimore Washington area. Shoshana is an Occupational lTherapist who is specially trained in functional and environmental assessment, accessible design, and assistive technology and specialized architectural products. Aaron Shamberg is a designer specially trained in commercial and residential design of spaces for people with disabilties, seniors, and ADA compliance. He and his partner, Mark Chase, a building constractor, are co-owners of Home Safety Innovations, a design and construction firm specializing in accessible environments.

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