Frontline Initiative: Health and Wellness
Strategies to Improve Quality of Life for People with Complex Support Needs
As a direct support professional (DSP), you may or may not have heard the term, “social determinants of health,” but as you interact with the person you support you are likely to play an important role in supporting their health. Social determinants of health (SDOH) are the conditions in a person’s environment where they are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks (Healthy People 2030). All these factors impact a person’s health and wellness.
Social determinants of health are the conditions in a person’s environment where they are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks. All these factors impact a person’s health and wellness.
Some people with disabilities experience health disparities impacting their ability to lead a full, healthy life that they would define as a good quality of life. This is often because people are not economically stable or have difficulty accessing healthcare. This may be even more so for people who have complex support needs like intellectual and/or developmental disabilities (IDD) and co-occurring mental health (MH) conditions. We can help reduce this inequity and support SDOHs in how we provide support to others. For example, I have sat in team meetings for many years, but never once heard anyone mention employment for someone with complex support needs. That needs to change. As supporters, we should expect the people we support to live full and healthy lives, similar to what we expect of the lives enjoyed by people without disabilities.
How do SDOH work?
Let’s look at how SDOH work. Employment is an SDOH because it provides stable income, a sense of social inclusion and belonging, access to health care, and a feeling of overall purpose in life. Employment is a critical part of anyone’s identity and sense of pride. In the disability field, have our expectations for competitive integrated employment been extended to all people with disabilities, regardless of their support needs? Within state systems of support for individuals with IDD, there is often a significant disparity in exploring employment options for people with co-occurring IDD and MH conditions. In many home and community-based systems, supports for people who have complex support needs primarily focus on placement and stability. Employment is rarely considered a factor that leads to stability and growth. In fact, when I recently asked a 20-something-year-old woman receiving Medicaid services why she didn’t have a job, she replied, “I am not stable enough yet.” Where did she hear that? People with co-occurring IDD and MH conditions should also have the opportunity to work, for the reasons noted above and for other reasons, including improved self-esteem and reductions in outpatient psychiatric treatment (Luciano & Meara, 2014).
True, it is important to figure out where someone will live and what support they will need. But helping someone to understand their meaning and purpose is equally important to their physical and emotional health and their overall quality of life. “It is motivating when meaning and purpose are given to treatment beyond just avoiding offending behavior” (Blasingame & Haaven, 2006). Some assert that people are more motivated to grow and change when their psychological needs—like being competent, autonomous, and engaged with others—are met. On the other hand, people are less motivated to grow and change when they feel coaxed and manipulated. This is grounded in Self-Determination Theory (Deci & Ryan, 2012).
Providing Support
Author Dan Pink (2018) proposed strategies that we can use to support people who have complex support needs. It helps to step back and ask basic questions about how best to support people.
- Ask how much autonomy someone has in their day. Take a moment to see where someone is “decision deficient.” Where does the person lack choice or control in their life? Conversely, where do they assert control in their life? Some people feel they have no control over some areas of their lives. Where can you support them to make more decisions for themselves? If the person has not made many decisions for themselves, it may be best to start with small decisions, like what they eat or wear.
- Ask yourself if the person has mastered the skills to accomplish a task. If the person feels confident in their skills, they will be more likely to feel motivated to make progress. You can support a person to focus on a particular skill and work toward mastery. If you ensure that people have the skills they need to succeed, they will be more willing to engage and make progress in that area of their lives.
- Ask yourself if the person feels a sense of purpose, like contributing to a larger goal, social connections, or sharing a common goal with others that is outside of themselves. Finding meaning and purpose or something that a person is passionate about can make things like anxiety or depression bearable or more tolerable.
Consider James, who was supported in the community with many restrictions to minimize his use of technology and social media due to a court order. James was described by his team as “unmotivated” and “resistant to treatment.” Most of James’ day was spent playing video games and arguing with his staff about what he should be doing instead. James had a well-written behavioral support plan. While the team was able to put good strategies in place, they struggled to engage James in building healthy skills, like taking showers, eating a good diet, and getting through his day without feeling worthless or thinking that his staff were “out to get him.”
It wasn’t until a new, weekend DSP was hired that this began to change. The new DSP was the same age as James. He talked with him as a peer. They talked about new things they could do together on weekends, like going to clubs and bars. Long story short: The new DSP didn’t focus solely on correcting, controlling, and redirecting James. He gave James options to try new, age-appropriate things to occupy his free time (and he had a lot of it!). James started to pay more attention to his hygiene and planning his days, so he was prepared to go out on weekends with this new DSP.
Unfortunately, this new DSP left his position, as so many do, and the focus on what brought meaning to James’ life was not sustained. His support team returned to focusing on avoidance and decreasing challenging behavior. Thus, the team did not capitalize on the momentum of real behavioral change driven by a focus on autonomy, mastery, and purpose. We might guess where that left James.
State systems of support must move beyond placement. We need to move beyond goals that only focus on avoidance and decreasing challenging behavior. Instead, support systems must provide opportunities for autonomous living where the person has the skills to succeed, and feels purpose and connection outside of themselves. Support should consider things that may lead to a better quality of life, like employment or the healthy behaviors that SDOH are all about.
Considering factors like autonomy, mastery, and purpose like James’ DSP did can provide the basis for engaging someone when teams feel all hope is lost. I encourage us all to think differently. We can expand the focus of our support beyond health and stability to finding ways for people to explore the natural human experiences that we all have in our lives. These can influence how someone shows up, counters their other struggles, and overall impacts their quality of life.
Citations
Blasingame, G. D., & Haaven, J. (2006). Practical treatment strategies for persons with intellectual disabilities: Working with forensic clients with severe and sexual behavior problems. Safer Society Press.
Deci, E., & Ryan, R. (2012). Motivation, personality, and development within embedded social contexts: An overview of self-determination theory. The Oxford Handbook of Human Motivation.
Healthy People 2030. (n.d.). U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. https://health.gov/healthypeople/objectives-and-data/social-determinants-health
Luciano, A., & Meara, E. (2014). Employment status of people with mental illness: National survey data from 2009 and 2010. Psychiatric Services, 65(10), 1201–9. doi: 10.1176/appi.ps.201300335. PMID: 24933361; PMCID: PMC4182106.
Pink, D. H. (2018). Drive: The surprising truth about what motivates us. Canongate Books.