Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities
Supporting aging in place for people with intellectual and developmental disabilities
Many people, including those with intellectual and developmental disabilities (IDD), want to age in place, or stay in their homes as they get older. While aging in place for people with IDD has been shown to have a positive relationship to overall quality of life, they can face many barriers to this (Schepens et al., 2018). One significant issue is home safety, especially falling. The risk of falls increases with age in adults with IDD, and adults with IDD may experience more falls than the general population (Hsieh et al., 2012), though there are effective strength and balancing trainings that can reduce fall risk. While falls can occur for many reasons, research suggests that people with IDD who also have arthritis or a seizure disorder, take multiple medications, use a walker or cane, and have difficulty lifting heavy items, are at increased risk (Hsieh, et al., 2012). Additional risks to consider include vision and hearing changes, unsupportive footwear, poor sleep patterns, and conditions such as diabetes, heart disease, and thyroid issues that can impact balance (National Institute on Aging, 2017). Falling greatly increases the risk for significant injury that could cause someone to be placed in long-term institutional care.
One way to prevent falls is to create a home environment that minimizes hazards. Consider each room in the home. Who uses the room and what activities take place in the room? Is there anything in this room that someone could trip over, bump into, slip on, etc. during regular use? Is the lighting in the room too dark, cause a lot of glare, or difficult to access? Include input from the person with IDD who will use the space. Is there anything in the home environment that makes them nervous or scared that they may fall? Are they avoiding certain rooms or activities because they are worried about falling? Have there been any falls or near-falls that they have not shared? Providing opportunities to discuss these incidents and concerns without risk of embarrassment, fear of “getting in trouble,” or concerns about losing access to certain activities or spaces can be very helpful in better understanding how to create a safe home environment for everyone.
While there is useful information available on fall prevention, home modifications, and other aging in place resources, including from the National Council on Aging (NCOA, 2021) and National Institute on Aging (NIA, 2017), each home environment and daily routine is unique. Working with a team of care providers to help assess specific needs and identify the right interventions for each context can be essential in supporting aging in place. Many programs, such as the Community Aging in Place-Advancing Better Living for Elders (Johns Hopkins School of Nursing 2021) or the Program of All-Inclusive Care for the Elderly (Centers for Medicare & Medicaid, 2021) use teams that may include medical providers, occupational therapists, physical therapists, social workers, and handy or home repair workers.
An occupational therapist (OT) has the expertise to assess the environment and the functional abilities of those utilizing the environment. They can help identify what is supporting safety and participation as well as what may present risks to an individual and their caregivers. The OT may recommend certain home modifications, such as eliminating rugs that pose a trip hazard or rearranging the furniture so that a person who uses a walker can access their favorite sitting area. They may also recommend adaptive equipment such as a shower chair or raised toilet seat to support bathroom safety. Technology may also be recommended, such as voice activated or motion-sensor lighting. These same approaches can be applied at workplaces for older people with IDD who want to continue to work.
Modifications can not only decrease the risk of falls, but also improve a person’s ability to complete activities of daily living (e.g. dressing, bathing, and hygiene) independently and decrease the overall amount of caregiver assistance needed (Stark et al. 2017). Supporting participation in activities of daily living is often very important for someone with IDD also experiencing cognitive changes, including dementia. An OT can also help design strategies to support continued participation in activities that may be impacted by cognitive, physical, or sensory changes. Recommendations may include the use of pictures to help someone find frequently used items or the adaptation of preferred activities so that an individual can participate independently after assistance with set-up. Home modification support is most effective when it is comprehensive, including evaluation of individual abilities and home environment, tailored intervention to address identified needs, and with caregiver training for carry-over and maintenance of the intervention plan (Stark et al., 2017). When working with an OT or any professional, it is important to include both the adult with IDD and their caregivers throughout the process.
Environmental considerations for aging in place should not stop at the physical environment.
Environmental considerations for aging in place should not stop at the physical environment. The social environment is also very important to consider as people with IDD get older. Ask about the important relationships in their lives and consider how to support maintaining these relationships. Is there a way to maintain work relationships post-retirement through video calls or arranging visits? What supports might be needed, such as transportation and increased supervision, to continue participation in valued leisure activities? Conversations between caregivers and adults with IDD around their vision for getting older can be very valuable. Where do they want to live? What do they want to be doing? Who else is around? What would help them achieve this vision and what might get in the way? Everyone has the right to live where they want as they age, and with a holistic look and collaborative approach at providing a supportive environment, people with IDD can do just that.
Centers for Medicare & Medicaid. (2021, June). PACE state websites. https://bit.ly/3oBFvuH
Dementia Practices. (2021). Resources. https://www.the-ntg.org/publications-1
Hsieh, K., Rimmer, J., & Heller, T. (2012). Prevalence of Falls and Risk Factors in Adults with Intellectual Disability. American Journal on Intellectual and Developmental Disabilities, 117(6), 442–454. https://doi.org/10.1352/1944-7558-117.6.442
Johns Hopkins School of Nursing. (2021). Where we work- CAPABLE. https://bit.ly/3qFmkCX
National Council on Aging. (2021). Falls prevention for caregivers. https://bit.ly/3lClIeg
National Institute on Aging. (2017). Fall-proofing your home. https://bit.ly/3qIY2YY
Schepens, H. R. M. M., Van Puyenbroeck, J., & Maes, B. (2018). How to improve the quality of life of elderly people with intellectual disability: A systematic literature review of support strategies. Journal of Applied Research in Intellectual Disabilities, 32(3), 483–521. https://doi.org/10.1111/jar.12559
Stark, S., Keglovits, M., Arbesman, M., & Lieberman, D. (2017). Effect of Home Modification Interventions on the Participation of Community-Dwelling Adults With Health Conditions: A Systematic Review. The American Journal of Occupational Therapy, 71(2), 7102290010p1-7102290010p11. https://doi.org/10.5014/ajot.2017.018887