It may surprise you to learn that a wheelchair is not the confining and freedom-less space that many think of it as. For many individuals, it is the main source of independence and freedom. Working with clients and selecting the proper wheelchair to fit their needs is one of the most significant and rewarding aspects of being a therapist at the Arc of Monroe County in Rochester, N.Y.

The Arc of Monroe works with and for individuals with developmental and/or intellectual disabilities and their families, offering a variety of services designed to increase independence and self-sufficiency, all while maintaining the quality of life. When a client is in need of a wheelchair, a therapist plays a fundamental role in the decision.

In the United States, there are 33.1 million adults (18 years and older) that find it difficult to physically function. The Arc of Monroe serves 3,500 individuals with intellectual and/or developmental disabilities and their families. Regardless of an individual’s ability or disability, as the population continues to grow older in the United States, therapists who haven’t yet worked with wheelchairs may find themselves in new territory. 

A Change Occurs

A therapist in this setting has clients with a wide variety of mobility needs, ranging from independent to profoundly disabled. When a client incurs a change in mobility status, it is important for caretakers to pull together and assess what is contributing to the change. Is it a functional decline occurring in a client that is currently ambulatory? Or, for those currently in a wheelchair, is a change in body weight or the functionality of the wheelchair the real issue?

A full assessment can provide important information. Initially subjective information is gathered from team members, followed by a mat evaluation where an individual’s range of motion (ROM), strength, posture, and positioning (fixed or not) are measured. This occurs whether a therapist or other caretaker discovers the problem.

Wheelchair Vendors with Invaluable Information

Working with the system is the best way to learn the system. As caretakers and therapists navigate this process, relationships in the field will be established and experience will be gained. A key to the process is working and building a strong relationship with the local wheelchair vendor. A solid relationship will allow more flexibility with trials and eventually aid in obtaining the equipment in cases of prolonged approval.

This specialist will serve as an invaluable resource to therapists. Whether the specialist is consulting on a quick fix or providing a full evaluation, the previously established relationship allows them to assess the latest advances in technology and equipment that will fit that particular client’s needs.

The wheelchair specialists will sit down with the therapist, the client, and at times a family member to discuss needs, positioning, and other areas of concern. Oftentimes, a trial period with the intended wheelchair/adaptive equipment is recommended – this is especially crucial for clients who are nonverbal. This allows team members to monitor the client to see how they are responding to the new equipment.

While a solid working relationship with the vendor is key, it is vital to involve a therapist in this decision-making process. When working with a vendor without consulting a therapist, the wheelchair may be inappropriate for the client and cannot be returned.

Letter of Medical Justification

Depending on the client’s need and case complexity, either a form is filled out and submitted to the insurance company or a full letter of medical justification is written. The therapist is charged with pulling together all applicable information and developing the letter.

Another consideration when selecting a new wheelchair is insurance. Working with insurance companies is often a time-consuming process in which the therapist and vendor must work through to determine how the wheelchair will be funded. Once funding is determined, the therapist can then put pen to paper and develop the letter of medical justification.

All of the information collected to date, medical diagnosis, mat evaluation measurements, and other information pertinent to the individual’s case is pulled together and included in the letter of medical justification. This letter includes full descriptions with precise detail of the medical history of the client, the current situation, and medical status.

Oftentimes, the insurance professional reviewing this information does not have a medical background. Given this, a detailed case needs to be made with evidence proving a need. The letter must paint a picture of the individual’s positioning, functioning, etc. Photography of the individual positioned in the incorrect equipment, as well as photos of the client in the correct equipment, can provide additional visual confirmation as to why the new equipment is needed. Finally, the therapist must include an itemized list of all the desired equipment for the new wheelchair, including a specific justification for each piece of equipment needed. 

The wheelchair vendor reviews the letter of medical justification and sends it to the primary care doctor of the individual for review. The primary care physician’s diagnosis must fit the therapist’s recommendation. Insurance reviewers are leaning towards mandating that all letters of medical justification be signed by a therapist who is ATP-certified (Assistive Technology Professional) by RESNA (Rehabilitation Engineering and Assistive Technology Society of North America), while the current regulations state that the paperwork must be signed by a state licensed occupational therapist (OT) or physical therapist (PT).

The Reward

Depending on the complexity of the wheelchair requested, it can take months to nearly a year to obtain the requested equipment. This length of time includes the evaluation, trial of equipment, writing the letter of medical justification, primary care physician approval, vendor review, and insurance review/approval. Due to the lengthy process, the client’s needs may change by time the wheelchair is ready to be ordered. If this is the case, it can prolong the process another couple of months in order to reassess the client’s needs.

Once the vendor receives the wheelchair and assembles it, the therapist or client is notified of the equipment’s arrival. At this time, the therapist works with the individual to aid in the adaptation of the equipment into the client’s everyday life. Continuous follow up and monitoring of the client’s use of the wheelchair is an ongoing process, as is maintenance to the wheelchair.

As a therapist, the rewards vary greatly; some are specific, such as a client gaining independence that they wouldn’t have had before or preventing an invasive surgery such as gastrostomy-tube surgery. Building relationships with clients or seeing the clients have the increased ability to form relationships with each other is a more personal benefit to working with this population of people.

Like most therapists, aside from obtaining the correct wheelchair or adaptive equipment, a large part of our work is spending hands-on time with the clients during one-on-one therapy sessions. Working in this setting, we do not typically see immediate results. In fact, at times maintaining our client’s level of function is the only visible improvement over long periods of time. For most clients the sessions do not follow a routine schedule and last anywhere between 15 and 90 minutes.

There are a lot of challenges working with individuals with intellectual and/or developmental disabilities; however providing freedom to these clients who feel that they are losing their independence can be very rewarding. Although the process for obtaining a wheelchair is lengthy, the moment the client finds comfort and independence in their new wheelchair makes the wait worthwhile.

— Paula LaMay, PT, is a licensed physical therapist, who has been working with the Arc of Monroe County day services program in Rochester, N.Y. for more than four years. Heather Margeson, OT, is a registered occupational therapist, with more than 10 years with the Arc of Monroe County day services program. Questions and comments can be directed to editorial@therapytimes.com.