This Disability Pride Month, we’re exploring some of the evolving factors that shape the disability care landscape, starting with World War I. An estimated one-third of U.S. soldiers medically discharged were suffering from either tuberculosis or neuropsychological conditions. These situations were also responsible for more than two-thirds of veteran hospitalizations after the war. At the time, to receive care, veterans were required to plead a case proving a direct correlation between disability and their service.
In 1921, Massachusetts Senator David Walsh introduced legislation that discontinued veterans from being required to display how military service had disabled them. The term was called “presumptive disability.” According to Disability Insurance Services, “A presumptive disability is one severe enough that the person is considered disabled without needing to show the impact on their job or that they are receiving medical care.”
For more than a century, presumptive disability has improved access to care, making a positive impact for many people with disabilities to seek benefits while not needing to continually plead a case for considerations that improve their quality of life.
While presumptive disability has created lifesaving improvements to everyday experience, a companion mindset can also support people throughout their lives: Presumptive Ability.
Like presumptive disability, presumptive ability is also a framework for removing obstacles to support quality of life. Unlike presumptive disability, however, presumptive ability aims to remove barriers on the basis that someone’s disability does not inherently mean they’re unable to live more independently. Following the trend of community integration, presumptive ability prompts organizations and professionals to regard individuals with disabilities as having the ability to benefit from more technology integration and less direct supervision.
Laura Leinenbach, Vice President of Programming for ANCOR member Developmental Services, Inc., (DSI) says that she often presumes an individual can likely benefit from remote supports. DSI serves 60 counties across Indiana and works with Night Owl Support Systems (NOSS) in providing remote supports for people with I/DD. NOSS offers remote supports in 22 states. “So often, care plans start with restrictions then backtrack when a person displays success. In many instances we really should start out with the least restrictive and add measures, if necessary,” says Laura.
Laura has spent her career assessing and interpreting factors that affect the people she cares for. She says that Remote Supports can instill independence and self-determination. “Nobody wants to be responsible for negative outcomes. Though our duty is to balance concerns while truly supporting a person’s quality of life. We can sometimes perform a disservice to people by starting with restrictions.”
In decades past, a common, top-down approach of administering care to people with disabilities was one of needing to fill beds in facilities with people who were considered irredeemably disabled. In 1967, nearly 30% of adults with intellectual and developmental disabilities (I/DD) lived in large state institutions, according to the Institute on Community Integration. By 2020, this number had dropped to 0.7%, according to the Residential Information Systems Project (RISP). Fortunately, contemporary care culture is evolving an outlook of community integration and person-centered care.
Laura has experienced many examples of how a presumptive ability approach fosters greater independence, leading to improved quality of life and often reduced problematic behaviors, which minimizes stress for family members and caregiving staff. For many people, care models are shifting to an asset-based companion approach. Laura says that in most instances she presumes that an individual can likely benefit from remote supports.
She tells of an individual who is a film enthusiast and wanted to attend movies with his girlfriend. Medication administration, however, routinely conflicted with showtimes. “Can you imagine the helplessness he felt with somebody joining their movie date simply to hand him pills?” says Laura.
Incorporating remote supports into his care plan, including a Dose Flip device reminding him to take his medication, removed the need for a staff person to attend movies. “Now he enjoys going to movies on his own and it completely changed how he interacts with staff. Many behavioral challenges we were accustomed to simply aren’t an issue anymore. He’s happier, our in-home staff is calmer, the home environment is more welcoming.”
Laura says that many people revel in the independence of walking to the corner store on a whim, going bowling when they feel like it, or meeting friends to play cards. She says that through Remote Supports some people can visit friends without unnecessary oversight. “Often, our choices are based on caring for multiple people at once. Sometimes people are stuck joining for activities they’d rather not do – they’re robbed of choosing how they spend their time. If an individual is relatively self-sufficient, remote supports can be that bridge to the freedom of self-determination.”
One person Laura cares for now meets friends for Bingo every week without accompaniment for the first time in her life. “Can you imagine somebody chaperoning every time you visited friends? I’m so glad she can now enjoy relationships with private moments and inside jokes the way we all should,” says Laura.
Though Laura wholeheartedly notes that remote supports aren’t for everyone.
“In cases where someone could easily get hurt, or instances of self-harm, obviously remote supports might not be a great fit,” says Laura. “Just as you do with any Individual Service Plan, you consider that person’s individuality.”
Reflecting on her decades in health care, Laura’s integration of remote supports has led to some of her proudest moments working in the field. “Some people I work with need someone in their corner because they may not have another advocate to speak up for their intentions and wishes. It’s been my life’s work, and like any passionate person, I work to leave the healthcare field in better shape by improving lives,” says Laura. “Because, in the end, that’s what we work to do. Provide health and provide care.”
The options provided by today’s remote supports tools can offer people more freedom, mobility, and independence than ever before. This is a crucial moment to presume the individuals we serve have the ability to flourish under less restrictive settings.
Ed Makowski is Outreach & Engagement Coordinator at NOSS.
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