Occupational therapists are highly skilled healthcare professionals who help clients improve their quality of living by treating mental and physical dysfunctions. These skills are complemented by specialization in accessibility design. We strive to help our clients function safely and independently in their homes, at work, and in their local communities.
As OTs, our clients span the entire lifespan. We design accessibility for them based on their condition, diagnosis, culture and lifestyle. Amyotrophic Lateral Sclerosis (ALS) is a diagnosis that requires us all to use a different lens to design for accessibility. It’s more commonly known in the United States by the name Lou Gehrig’s Disease.
1 Clients with ALS have a two to five year survival rate. The fatal progressive neurodegenerative disorder affects all ages, but ALS is more common in those who are white, over 60, and men. The incidence rate of ALS is higher in military personnel than it is for non-veterans. 2 However, clients can be diagnosed at different stages of their lives and have different meaningful jobs. Because the disease progresses quickly, it is important to intervene early to ensure the client has the best quality of their life.
A composite case study
We will use a case study that I have used to illustrate the urgent need for adaptations and home modifications for ALS clients. All identifiable features have been removed.
Gordon Williams, a 55-year old male, is a Gulf War veteran, married to Beth and father of two young adults who live far from home. After nine months of suffering from symptoms, he was finally diagnosed with ALS. He had to be tested for other possible causes. He lives on six acres of North Carolina ranch-style land and has a home. His wife works as a lawyer and he is a farmer.
Initial Assessment
Gordon was diagnosed by his doctor and referred to a local ALS clinic. He received and will continue receiving robust healthcare services every three month. The doctor also referred him to home occupational therapy. As the home health therapist, my evaluation revealed that Gordon was still independent at home. However, he has stopped farming because of the fear of falling and energy strain. He is prone to dropping items and has reduced shoulder mobility. In the last two months, he has suffered three falls that did not result in serious injury.
Gordon and Beth are concerned that Gordon can remain as independent as possible while enduring minimal pain. When he told me his doctor that he might only live a few more years, he became very emotional. I also discussed the decline in independence and the need to modify the evaluation with Gordon’s current emotional state and mental well-being. The main areas that we covered during the OT evaluation were:
- To assess safety and accessibility, he gave us a tour of his farm and home.
- Discussion of his leisure, spiritual and social activities
- Understanding his social support system
- Discussion about his preferences for participating in IADLs like cooking, driving, and shopping
- Evaluations of the body, such as strength, tone, balance and motor control.
- Cognitive and emotional screenings/assessments
Grants for Military Veterans
Gordon was informed by me of grants that are available to military veterans with ALS. 3 Many veterans with ALS can get 100% disability and a $68,000 housing grant. 3 I advised Beth and Gordon on the importance of timely applying for the VA grant in order to start home modifications as soon as possible to maximize Gordon’s independence.
Recommendations for Home Modification
Based on Gordon’s lifestyle and goals, I suggested both low- and expensive home modifications. For ease of transfers and decreased falls, I suggested universal solutions such as grab bars by the toilet and in the shower, ramps and raised toilet seats. I educated them about how to clear pathways for wheelchair navigation. I explained that Gordon would need thick straws for liquids and that he would need to have a toothbrush, utensils and tools to make it easier for him.
I recommend that you build a roll-in, roll-in shower that can be rolled into by a shower chair. A Hoyer lift from the bedroom to the bathroom will assist Beth with future transfers. Widen the bathroom doorway to accommodate a wheelchair. Change the vanity to a pedestal sink to make it accessible for wheelchairs.
Gordon is struggling to communicate verbally and the speech language pathologist and me discussed it. I also informed the couple that the VA offers an $11,000 grant toward the purchase of a wheelchair-accessible van for veterans diagnosed with ALS.
Mobility is important
These home modifications were not the only things I suggested. Beth and Gordon also received education on assistive devices that can be used for functional ambulation, such as a wheelchair and a platform attachment to the scooter if he loses his grip strength. As the disease progresses, we also discussed the possibility of a power mobility wheelchair.
Gordon, a veteran, is eligible for coverage for a power wheelchair. Because the wheelchairs require time to adjust for position and controls, and personal sitting, I recommended that Gordon get started on the customized wheelchair fitting as soon as possible. The power wheelchair will provide pressure relief, the ability to raise the chair for specific activities and a variety of control options, including an eye gaze, joystick, foot control or head control depending on the severity of the disease.
Making the move
After only six months, Gordon and Beth were able modify their home using the suggestions of the entire healthcare team. This is a great outcome for ALS clients, but it is not common.
Many people with ALS have difficulty accepting the reality of their disease. They may take too long to process it mentally and are unable to make home modifications. Another factor that may delay the adoption of necessary modifications is ALS is twice the commonest in veterans. However, more than 5,000 cases are diagnosed every year in the United States 4.. Many people who aren’t vets don’t have the money to make home improvements that would help them with this life-limiting disease.
Valuable Resources
Many people with ALS visit a local ALS clinic approximately every three months to receive follow-up care from their healthcare team. The clinic may have an “equipment cupboard” which includes adaptive and mobility equipment that has been donated to be loaned out in the future. To ensure that you provide efficient interdisciplinary care, you should contact the ALS clinic as part of your client’s rehabilitation team. You can help clients find equipment through other sources if your client does not have access or could benefit from additional assistance. ALS.org offers information about local support groups and advocacy areas in which OTs can get involved with ALS clients.
As with all clients, it is important that OTs consider the individual’s economic and social factors when working with someone with ALS. This includes their education, finances and caregiver support. Some clients with ALS decide to leave their home to be with a family member or to receive caregiver support as the disease progresses. OTs are available to help clients with ALS, regardless of their physical location. They will work with them to identify the needs and goals of their clients and caregivers while taking into account the environmental context.
You can pursue additional certifications if you are an occupational therapist who works in home modification or wheelchair fittings.
The National Association of Home Builders offers a three-course program that allows therapists, interior designers and builders to learn more about home design to increase their independence and safety. OTs can also get an Assistive Technology Pro (ATP) certificate through the Rehabilitation, Engineering and Assistive Technology Society of North America . This certification enhances the abilities of rehab professionals to select and use assistive technology to improve the well-being and health of clients and users. RESNA offers a Seating and Mobility Specialist certification (SMS) to rehabilitation professionals. This certifies their ability to perform mobility assessments and interventions, as well as find funding resources.
These certifications can be obtained or contacted by a rehabilitation professional who holds these certifications. This will allow you to provide clinically exceptional care for ALS clients.
Bridget Scheidler, EdD, OTR, CAPS, is a clinical assistant professor for Baylor University’s Occupational Therapy Doctorate (OTD) program. As an occupational therapist for over 16 years, she specializes in working with older adults. She became a certified aging-in-place specialist (CAPS) through the National Association of Home Builders in 2013. For more information, contact RehabEditor@medqor.com.
References
1. Mitsumoto H, Chad, DA, and Pioro EP. Amyotrophic Lateral Sclerosis. Philadelphia: Davis. 1998.
2. Weisskopf MG, Cudkowicz ME, and Johnson N. Military service and amyotrophic lateral sclerosis in a population-based cohort. Epidemiology, 2015. 26(6): 831-838. doi:10.1097/EDE.0000000000000376
3. ALS Association. FAQs. ALS.org. 2023. Accessed January 20, 2023 https://www.als.org/navigating-als/military-veterans/faqs
4. Centers for Disease Control and Prevention. CDC: Amyotrophic lateral sclerosis. CDC.gov. Published April 5, 2017. https://www.cdc.gov/als/WhatisALS.html
Original Article: https://rehabpub.com/conditions/neurological/als/als-home-modification-the-time-is-now/?utm_term=RM%20Rehab%20Today%20Mar%202023&utm_campaign_type=newsletter&utm_hsid=415264501&utm_medium=email&_hsmi=252730150&_hsenc=p2ANqtz-_qgHzE8w9X5-fp3_cO_wCH3ahDsHWBSIcqbMXRnhRkNx-e2pnt8EeKNoM7XyfsqL5W5HLMsV2VN6SxYMoAXUFWzXB01Q&utm_source=newsletter
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