The CDC recently reported 90% of the $3.3 trillion spent on health care in the U.S. annually goes to the treatment of chronic and mental health conditions. For all this money, however, there’s not much to show. Although spending is higher than ever, tangible gains have not been made for chronic health patients. Many people with long-term conditions don’t get the treatment they need. Additionally, patients suffer from a huge range of accessibility issues. Chronic illness and accessibility go hand-in-hand. Unfortunately, our public spaces don’t reflect that need. Here are some of the accessibility challenges people face and the associated emotional and mental health strains that go with it.
A World Not Built for Chronic Illness
Healthy people take many things for granted. However, walking up a flight of stairs, getting in and out of the car, and even opening doors may be difficult for some chronic pain patients. New government regulations aimed at increasing accessibility have been passed, but rarely is this reflected in reality.
To begin with, newer regulations generally only apply to structures built after a certain date. People living or working in older buildings rarely see changes, as retrofitting buildings is often very costly and building owners regularly resist remodeling.
Doctor’s offices’ demonstrate just how problematic the situation is for chronic illness and accessibility. Disabled patients face many challenges. These include:
- difficulty accessing rehab equipment and scales
- problems using X-Ray machines
- trouble getting onto the exam table
Although federal law requires medical offices to be accessible, few actually are. For example, out of nearly 2,400 primary care centers in California, less than 8 percent had an accessible exam table.
Chronic Patients Do Not Get The Right Kind of Care
Medical professionals don’t often have the required training to understand how disabilities really affect people. As a result, chronic pain patients don’t receive the care they need. And this doesn’t just apply to their specific condition, but to other health concerns.
Research has proven that disabled patients receive fewer screening tests and less information about preventative care. A 2006 study showed that disabled patients with early-stage breast cancer were less likely to undergo surgery or receive radiation therapy than their healthier counterparts. Consequently, disabled patients were more likely to die from manageable conditions. In fact, investigations have revealed that some physicians refuse to treat certain types of chronic pain patients.
People with intellectual disabilities are even more likely to see these negative consequences. Few medical schools teach their students how to communicate with intellectually disabled patients. As a result, intellectually disabled persons die ten years earlier on average compared with non-disabled patients suffering from similar health conditions.
What Does This Mean for Employment Opportunities?
Employers often think of chronic illness as a ticking time bomb. Put simply, employers are less likely to keep employees who have developed chronic conditions. They likewise may actively discriminate against potential hires, even those who are well-suited to certain jobs because they do not want to shoulder the healthcare cost. Oftentimes, this forces many people to not disclose their health conditions for fear of employment discrimination.
Even people who do manage to find work often face difficulties. Working with chronic conditions can be challenging. Chronic conditions often cause pain, fatigue, and stress. This can translate into reduced productivity, inability to focus, depression, and other problems at work. For this reason, people are less likely to get promoted, participate in social events, and prosper in their work environments.
What about Schools?
Schools generally provide the highest levels of accessibility for chronic illness patients. Government law is strict and requires accommodations to be made for those with physical and mental disabilities. Both public and private institutions often feature counselors and healthcare personnel trained to work with chronic patients. However, this only tells one side of the story.
Although many schools are better equipped than workplaces and public spaces, they still may not have the right equipment in place. For example, older schools may not have elevators for people in wheelchairs. For key facilities like libraries and laboratories, access can be a serious challenge.
Furthermore, chronic patients may be stigmatized at school or unable to keep up with their peers. They face many of the same stressors as employees at work and struggle with achievement gaps.
Health insurance is essential for people with chronic conditions. Few people have the resources to pay for the care they need without it. However, many plans may not have the coverage you need. Or they may include a high deductible or too few doctors in network.
You need to know exactly what your insurance covers and what it doesn’t. This is the only way you can financially plan your treatment options to ensure you get the medical care you need while staying in budget.
Although the Affordable Care Act outlawed insurers from denying coverage for pre-existing conditions, some have come up with clever workarounds. In some cases, you may benefit from talking to a third party who can help break down your insurance more clearly.
What Can Patients Do?
Accessibility is a public health challenge for people with chronic illnesses, but that doesn’t mean you don’t have any options. It just takes some research, commitment, and support. These are three essential strategies you need to know:
1. Know How to Manage Your Illness
This is never easy, but ensuring you are on the right medication and following the right lifestyle is key. Every person is different. It may take years to receive a diagnosis, and find the right combination of physical therapy, medications, and lifestyle choices that work best for you.
2. Build a Support Network
Everybody needs a support network. For chronic patients, it’s even more important. Managing illness is difficult. Medical treatment is stressful enough. Add financial and mental stress and it can be tough to deal with.
A support network to reach out to can be extremely beneficial. Talk to friends and family, along with local disability networks. They’ll be an empathetic set of ears for you to talk to and may even help you figure things out.
They can also help you find counselors who provide mental healthcare, illness care services, and places that better serve people with your condition. More than anything, you can share your story with others who have similar ones. This can help you build the support you need.
3. Find Accommodations for Your Condition
This also takes research—once again showing the value of a support network. Look for medical offices, employers, and schools that have the proper facilities for your needs. Likewise, talk to employers to find solutions that may allow you a more flexible schedule or to work from home. Know your rights within the American With Disabilities Act (ADA) to ensure you are treated fairly.
The Bottom Line: Chronic Illness and Accessibility
Chronic illness is more than just a medical problem, it’s an accessibility one. More than 45% of Americans have at least one chronic condition, but many people still struggle with access to the right hospitals and medical facilities, employment, schools, and more.
That’s why it’s essential for people to work together with support groups to find the best treatment strategies for themselves. They need to know their rights and take advantage of powerful tools like the internet, social media, and advocates who can help them not only live with a chronic condition but overcome it and thrive.
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