Standing Up for Individuals with Intellectual Developmental Disabilities

Nationwide, 6.5 million individuals—or roughly two percent of the population—have some form of intellectual developmental disability (IDD). These individuals face unique challenges when it comes to getting appropriate care but are often overlooked because they do not necessarily fall into traditional disparity populations based on race, income, or geographical location. 

Bettering our understanding of individuals with IDD can help us better manage their physical and behavioral health care—improving individual outcomes and strengthening the communities where these individuals live. 

The Social Determinants Impacting IDD Populations

Intellectual disabilities are more common in low-income communities. According to the United Nations Development Program, 80 percent of individuals with disabilities live in low-income areas and—globally—they represent 1 in 5 people in the world’s poorest communities. 

Poverty contributes to additional problems that impact an individual’s health—including food security, unemployment and access to insurance, and homelessness. As a result, studies have shown that people with IDDs have a higher rate of health conditions such as epilepsy, neurological disorders, gastrointestinal disorders, and behavioral health conditions. 

The physical and mental conditions—compounded by the social determinants of health faced by these individuals—can lead to poorer health outcomes for those involved. As a result, although individuals with IDD show lower rates of death than the general population for common conditions like heart disease and cancer, they show higher mortality rates for conditions such as Alzheimer’s, pneumonia, and septicemia. In addition, the life expectancy of females with IDD is 19 years lower than that of the general population, and the male life expectancy is 17 years lower. 

Challenges in Caring for IDD Populations

Many states offer Medicaid developmental disability waivers, which vary depending on the severity of the intellectual or developmental disability. Depending on the individual, these individuals range from thriving at home with sporadic support to those that live full-time in a group home. 

While many children with IDD are able to access support services through schools and communities, when those children become adults, that support is harder to come by. Over 80 percent of surveyed medical students report receiving little or no formalized training on caring for individuals with IDD, and 50 percent of medical school deans admit that their programs are not set up to competently train graduates to work with individuals with IDD.

To help protect these individuals, the US Department of Justice has guidelines for caregivers that seek to help individuals with IDD integrate successfully into the community through access to appropriate support and freedoms. For the case managers who work with these individuals, though, meeting these guidelines can cause additional administrative burden that takes away from the time that could be spent focusing on the individual. 

So how do we effectively care for these individuals? Providing appropriate care requires a system that both actively identifies gaps in care—and manages administrative burden—to enable care teams to spend the most time on what they do best: caring. 

Optimizing Care Team Time

There are a lot of regulations surrounding the health and safety of individuals with IDD, and while these regulations are there to protect the individual, it’s also crucial to ensure that our care teams are not spending so much time on paperwork that it becomes distracting from the individual’s care. 

Relying on technology to help track individual patterns, communicate and coordinate with other providers, and run reports that identify gaps in preventative care can streamline provider workflows by automating tasks that manually take a significant amount of a provider’s day. This frees up care teams to spend more time focused on the individual, less time focused on the paperwork, and ultimately support more individuals—all without sacrificing the quality of care upheld by organizational, state, and federal regulations. 

Hope Starts Here

Our country’s IDD community encompasses a wide range of both physical and mental abilities, but all of its individuals—regardless of their conditions—have something to offer to their larger communities. By recognizing where we have shortcomings in caring for these individuals and meeting together as communities to address those gaps, we can start to ensure our time as care teams is spent most effectively.

As providers, no matter what we do—whether it’s sitting down with an individual or managing care plans on a platform—we’re all hope starters. The collaboration, compliance, and care we strive for enables these individuals to have better health and better tomorrows, and all of us to have a brighter and better community.

Related Reading: Addressing patient and member needs during the pandemic: a robust population health framework is key

Brandie Williams is the Director of Operations at Rappahannock Area Community Service Board, where she has spent almost ten years advocating for and facilitating better care for marginalized individuals—including those with developmental disabilities, mental and behavioral health conditions, substance use disorder, and social determinants of health. 

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