When I think of environmental adaptive equipment, I recall the report given to me by a caregiver for one of my past patients:
“She fights me every time I have to sit her up, and when we do finally get her sitting, we need two people to hold her up because she pushes backward, and she’s strong! She stayed in bed all day because I knew you were coming and that you were going to do some bed exercises with her. There’s no way to get her out of bed by myself unless I use the Hoyer lift, and I didn’t want to take her out of bed just to have to put her back in it again.”
As an occupational therapist (OT), I cannot count the number of times I been told a statement similar to this in my line of work. It usually takes a few sessions before the caregivers really believe me: the patient isn’t fighting, but is instead unsupported and understandably fearful of falling; that the patient is indeed strong, and would be stronger if given the opportunity to sit up–straight up at the edge of the bed– more often; and that if we could adapt the environment to the patient, the patient wouldn’t have to modify their daily schedule to being bedridden all day just because the therapist is coming. It usually takes a few sessions, but soon enough, I am being praised as a miracle worker. That is going a little too far because the answer is usually way too easy.
Occupational Therapy Equipment for Adaptations
The answer to the above scenario, the miracle if you will, was a matter of providing the patient with a platform for her feet to securely bear weight on when sitting at the edge of the bed. I’m a big fan of those big, wide, rubber-footed aerobics steps from the 1990s. I am often nabbing them off of the internet at a discounted price as a quick fix to a patient’s in-home hospital bed that is too high and cannot be lowered. (Important note: Medicare providers will often send people home with semi-electric beds. These function in a way that the head and foot of the bed can raise and lower, but the actual bed frame itself is unable to unless manually controlled by a crank at the foot of the bed. This crank takes time and patience that the average non-sainted human does not have, and puts caregivers at risk for repetitive shoulder, arm, or hand injuries. Patients must pay a one-time out-of-pocket fee that is usually a couple hundred dollars if they want to upgrade to a fully electric bed.) Once the aerobics step is in place, I bring the patient to the edge of the bed and provide proprioceptive input to hips, knees, and ankle joints– literally re-engaging the patient in using their body weight and natural alignment to support themselves in upright sitting. There’s no more “fighting”, no more daylight hours spent in bed, and within a few more sessions, the patient is making gains toward increased self-care, dressing, and yes, even out-of-bed transfers, all due to the ability to tolerate upright sitting, to free up the upper extremities for functional activities, and to use the lower extremities for balance and support. Lest we forget… it was an aerobics step that changed this problematic scenario around into a “miracle.”
Before our sessions began, the patient had to adapt to fit the environment by either waiting until two caregivers were present for bed mobility and transfer support, or by staying in bed too long, or relying on a Hoyer lift. By adapting the environment to fit the patient, we maximized the patient’s functional potential, increased opportunity for further strengthening and daily engagement, and decreased risk of bedsores and burden of care.
An aerobics step for less than $30 was not only the “miracle solution” but it was also a long-lasting, super easy answer to what had been an ongoing disabling problem. Unfortunately, the reality is, the obtainment of adaptive equipment isn’t always that easy.
The definition of durable medical equipment (DME) according to the Centers for Medicare & Medicaid Services (CMS) website is that which is “durable (can withstand repeated use), is used for a medical reason, is not useful to someone who isn’t sick or injured, is used in your home, and has an expected lifetime of at least 3 years.” OK, so maybe someone else in the household would find it useful to throw on some spandex and do some aerobics with my patient’s step…
The point is, miraculous or not, I know, you know, and we all know that Medicare is not going to pay for an aerobics step, no matter how I could justify and document its important role in my patient’s safety and functional potential. Also, there may be patients on a budget who cannot afford the environmental adaptations that Medicare or other insurances will not cover or reimburse for. While the aerobics step happened to work out for this patient, it is certainly not customizable and may not be suitable for others. Lastly, a big clunky aerobics step may not be feasible and may even be a risk hazard within a small space such as a skilled nursing facility (SNF) environment. In all of these cases, what’s a therapist to do?
The Inaccessibility of DME Equipment Reimbursement
Within an SNF, DME is billable for inpatients with Medicare Part A as part of the prospective payment system (PPS) per diem rate. This regulation came about when DME was considered mainly “walkers and wheelchairs”, and the understanding was that the facility would be responsible for providing all services and items necessary for their inpatients. However, DME has expanded and now includes many items that could potentially cost thousands of dollars. As the aging population increases and administrative and medical costs continue to skyrocket, something will have to give, will medically necessary DME be at risk?
Medicare Part B may also pay for DME for “use in the home”, however Medicare laws exclude any facility that provides nursing or rehabilitation care from its definition of “home”.Thus, if long-term patients require DME within an SNF, reimbursement must come from Medicaid, other insurance providers, or private pay sources. Similarly, Advantage Plans vary regarding whether DME is covered for patients living in both SNFs and the community. For patients who may not have these alternative reimbursement options, the financial burden often is put in the hands of the patient or their family.
Lastly, certain parts of the country now require DME suppliers to apply through “competitive bidding” to be a contracted Medicare supplier. Those that are selected are then registered to be the only suppliers with whom Medicare beneficiaries can obtain the DME that they need. However, a 2015 article in Forbes explained how this system is unsustainable and potentially a government price-setting risk.
So, in a nutshell, the obtainment of DME is expensive, restrictive, and for many unreimbursable. Is there another option?
The Adaptive Design Community- Moving Beyond “Product” to a Future of “Process”
Nestled in the heart of New York City’s garment district, among the wholesale warehouses of eye-popping fabrics and flashy fashions, is a two-story storefront displaying colorful and creative works of an entirely different nature. I personally like to refer to it as “The LegoLand© of Cardboard.” In many ways, the window displays seem to showcase theme park-like multi-faceted, colorful puzzle configurations of whimsy. However, there is much more to Adaptive Design Association than meets the eye.
In 2001, Adaptive Design Association (ADA) was established in New York City as an independent non-profit response to the problem of marginalizing people with disabilities due to inaccessibility of adaptive and inclusive resources and equipment. The mission of ADA is to “ensure that people with disabilities receive the custom adaptations they need to live healthy lives and fulfill their developmental, academic, and vocational potential, and to promote education, inclusion, widespread replication, and social justice.” The founder, staff and equipment fabricators of ADA continually stress that their mission is not about “products” nor is it exclusively for New Yorkers. Their mission is about the “process” of adaptive making and the shared effort of a global community in order to provide customizable, low tech, affordable, inclusive, fun, and eco-friendly adaptations to people of all ages and needs.
So, aside from their windows showcasing various seat inserts, tilt-in-space chairs, standers, communication devices, and writing easels (and so much more), ADA’s second floor is where the heart and soul of their mission pumps, grinds, and hammers the point home. It is here that their on-site workshop opens its doors to therapists, teachers, family members, and local makers who pay to learn the invaluable techniques and processes of adaptive design in hands-on continuing educational courses, field trips, and internship opportunities. ADA has a non-proprietary stance on their designs because they do not want to focus on ownership or rigid adherence to a product design. Instead, the emphasis is on the building of, expansion of, and access to adaptive ideas and thought processes toward an all-inclusive, customized and creative world of safety and support for all populations. Their website includes a community blog, forum and learning library with resources and videos for a global community to grow, collaboratively problem-solve, and collectively create to meet the needs of anyone, anywhere.
A Local Idea (Who’s with me on this?): The Embracing of the Adaptive Design Community within New York’s Naturally Occurring Retirement Communities (NORC)
New York’s Naturally Occurring Retirement Community (NORC) programs are “state funded and administered by approved non-profit organizations. They are a collaborative effort between the NY Department for the Aging (DFTA), the housing system, the United Hospital Fund, various service providers in the community, and elderly NORC residents themselves.” The purpose of NORC programming is to allow accessible “aging in place” support and services to residents aged 60 and older. While NORC offers a range of services and collaborates with multiple organizations and service providers, at this time they do not have a formal adaptive design community. The groundwork and foundation are already there, and thus this could be a potential opportunity for occupational therapists to pick up the torch and carry the flame toward the implementation of a local adaptive design program aimed at providing environmental solutions within New Yorkers’ homes and communities.