RALEIGH -- Despite advances in prevention and treatment programs, HIV and AIDS continue to be a significant public health concern across the United States. North Carolina in particular continues to have high rates of new transmissions.
The Centers for Disease Control and Prevention’s HIV/AIDS office research demonstrates that public health programs should have a five-pronged approach to addressing HIV and AIDS, including testing, condom distribution, care retention, behavioral strategies, and PrEP availability.
PReP is a pre-exposure medication, using the brand name Truvada, that decreases the likelihood of contracting HIV in case of contact through sexual intercourse. Hydeia Broadbent, an HIV activist, points to this article discussing the purpose of PrEP and its role in lowering transmission rates.
Despite the availability of PrEP, people in some communities have proven less likely to take it. The North Carolina AIDS Action Network, started as a way to raise money to ensure people with HIV and AIDS had the money for medications, advocates for education and healthcare availability for people with HIV/AIDS throughout the state. The group shared an article recently through Facebook discussing the lowered rates of taking PrEP among African American men.
This issue is particularly important in North Carolina where African American men have new transmission rates more than five times their white counterparts. HIV/AIDS transmissions in the African American community has not slowed considerably as has been true of other racial and ethnic groups although poverty also is a key indicator of transmission likelihood. That race/class intersection matters in a state without expanded Medicaid and other fail-safes for people to get the care they need.
Glen Cameron, a North Carolina man living with HIV who speaks about his life story, discussed in a moving speech about the difficulties of living life without health insurance. In this speech, posted by the North Carolina AIDS Action Network, Campbell discusses trying to find money to cover healthcare costs and applying for hardship funds as obstacles for him.
“Playing politics as usual is playing fast and loose with people’s lives,” Cameron said in his speech.
There are some ways that the state’s Division of Public Health is working to address this crisis. One is to employ “state bridge counselors” who “actively look for HIV-positive people who have fallen out-of-care” and help them to find medical providers. A plan also is in place to begin having public health departments in various counties throughout the state offering PrEP available for low- or no-cost for people in significant financial need.
These government and nonprofit programs work together to address this public health crisis throughout the state although numbers are not yet out for the past two years.
RALEIGH – Special Olympics of North Carolina serves as the pre-eminent organization guiding the state in opportunities for athletes with disabilities, providing sports state-wide for a range of athletes.
The Special Olympics of North Carolina (SONC) serves more than 40,000 athletes per year, making it the ninth largest Special Olympics group in the world, according to Lauren Saulter, the Sports Director in the organization’s Wake County office. The organization serves primarily people with intellectual disabilities but has expanded in recent years to include people with some other conditions, such as autism spectrum disorder.
“Most of our athletes play more than one sport,” Saulter said. “We really encourage them to play as many as possible because it gives our athletes the opportunity for physical fitness, sometimes for the first time in their lives.”
SONC offers programs in 19 sports.
“Basketball,” Saulter said, “definitely in North Carolina, basketball is really popular.”
The offerings include swimming, soccer, and gymnastics, as well as more unexpected options like bocce ball. The goal is to provide training at least once weekly for eight weeks and then have competitions, Saulter said. Some athletes require special assistance, such as ramps for people in wheelchairs who participate in bowling, but the goal is to use traditional game rules as much as possible.
The organization has been part of the North Carolina culture for 50 years, offering “joy, courage, and empowerment” to its athletes over a half-century, according to the group’s Facebook page.
Although Special Olympics exists outside of the school system, Saulter said her educational experience led her to an interest in adapted sports to give people an opportunity to be active.
“P.E. is something that’s still there in North Carolina, but it can be minimal,” Saulter said. “
The American Association of Adapted Sports Programs, an advocacy group aimed at raising visibility and frequency for these programs, considers the use of adapted sports “a hoped for, rarely attained opportunity in the majority of schools across America.”
To that end, SONC is working to partner with school leaders. A tweet this week showing a large group meeting says “Special Olympics University Leaders (SOUL) met this week to discuss inclusion in schools across the state.”
This effort is one that Saulter said is part of a growing body of work at the organization to address “the whole person.”
In fact, this SONC effort is part of a broader movement to make sports workable for people with various intellectual, behavioral, and physical disabilities. Groups like TOPSoccer, a nationwide program to allow these children to compete in low-stress soccer environments, and The Miracle League, a similar program for baseball, are cropping up nationwide.
As the world adapts to treating people with disabilities holistically, physical fitness has become a hot topic. Once the goal for people with physical and even intellectual disabilities – where no physical impairment exists – was simply to exist without worry for cardiovascular health or personal fulfillment. Over the past decade, that has changed as the landscape for treating people with disabilities has evolved.
One area to see this expansion is adapted (or adaptive, depending on the industry or state) physical fitness through both physical therapy and school physical education.
Julie Weibe is a veteran physical therapist with more than 20 years of clinical experience. Her particular area of interest is in post-partum women who have pelvic floor dysfunction, but a growing number of other people have pelvic floor issues, and Weibe’s work, including pioneering a physical therapy regimen to help these people, could alter the way pelvic floor dysfunction is treated.
Joey Feith is an elementary-school PE teacher at St. George’s School of Montreal where he works with a range of students to help them improve their physical fitness option. Feith runs the website www.ThePhysicalEducator.com where he works to teach people about how to incorporate physical education more fully into their school’s day. Through the site’s social media programs, such as their Twitter feed, Feith is able to reach a broader group of educators, through thought-provoking pieces on topics like how to assess whether a student is able to learn effectively in a PE class.
At Friendship Circle, a school for children with disabilities in Michigan, parent Karen Wang, author of My Baby Rides the Short Bus, gives ideas for ways children with disabilities can be included in PE classes. That may mean working to reduce ambient sound for children with sensory integration issues, or it could be slightly altering traditional activities to make them workable for physical limitations. Wang’s work, and that of Friendship Circle in general, aims to make PE a better experience for all students.
Another group of people work to make a difference by arguing for healthcare and insurance law changes. Some of these changes would make exercise options available more broadly for people with disabilities.
Donna Ellington, a school psychologist in the Berkeley County (SC) Schools, considers herself a healthcare activist and shares her thoughts on why universal healthcare solutions could aid in the development of better healthcare solutions. Ellington has created a repository of information with stories and data advocating for universal healthcare solutions, such as Medicare for All.
On the other hand, Christopher Alterio, a certified occupational therapist with a doctorate degree, advocates for better healthcare by discussing the many ways in which healthcare professionals make decisions for financial, rather than patient care, reasons. For Alterio, occupational therapists often face ethical dilemmas that affect how they can treat their patients. When it comes to insurance billing, for example, Alterio feels that one important question the profession should “measure impact in terms of lives affected or in dollars spent.” While the lives affected obviously is more important, the money can have an impact how patients are treated. For people with disabilities who are looking for physical outlets to improve their condition, the current state of occupational therapy may not provide the best outcome, and Alterio uses his voice to argue for a different way that allows patients the best outcomes even if it does not generate the most money.
The volunteer world is also catching wind of the need to provide assistance for people with disabilities. Gopher Sports is one example of an adapted PE curriculum that is available for use in a variety of schools. Jo Dixon, proponent of this system, is a physical education department chair at a Colorado middle school. She works to teach other PE teachers how to create mentor systems that allow able-bodied students to work with special needs students on how they can play sports or engage in exercise. This program gives both groups of students the opportunity to expand their experiences.
A third group has sought to address this issue through technology.
David Mou, who holds both an MD and MBA, is the founder of Valera Health. This start-up, in business since 2015, works to find ways to follow-up with mental health patients through apps that mental health patients can have on their smartphones to help them with managing their care after release from in-patient or other intensive mental health therapies. This application is aimed at helping people with mental illness by allowing their clinicians to monitor, through the app’s collection of data, whether a patient is doing well. The app would allow doctors to connect with patients before they reach a crisis state, reducing their need for in patient healthcare services.
Stephen Cluskey is another example of a disability rights entrepreneur. Cluskey’s company, Mobility Mojo, works to help people with mobility disorders figure out how they fit into the world of travel. The goal for the company is to be a sort of directory for people who need handicapped-accessible information for travel.
Regardless of whether an issue is addressed through education, activism, or technology, the landscape is ever-changing for those among us with disabilities.
I'm a recovering journalist now living a Renaissance life working as a writer & political strategist. I also am the mom to 2 children, one of whom has autonomic dysfunction & Hypermobility Spectrum Disorder, I write about politics and healthcare in North Carolina.