A Transforming Experience: Working with Clients Who Have Down Syndrome
If you haven’t worked with clients who have disabilities, here’s a message from fitness professionals who do: Try it. At least once. The experience is likely to have a profound impact on their life and yours. In addition to raising your awareness, it can renew your enthusiasm and inspire a shift in perspective that will translate to more meaningful relationships with all of your clients—and, in fact, the community as a whole.
One population that you might consider serving includes youth and adults who have Down syndrome. Down syndrome is the most common genetic condition in the U.S., and there are about 400,000 Americans living with it today. People in this group, like people with other disabilities, are at an increased risk for obesity and the health consequences related to it, says Joanna Winsborough, National Development Director for KEEN USA (Kids Enjoy Exercise Now USA), a 501(c)3 nonprofit that provides free non-competitive fitness programs that connect trained volunteer coaches and young people with disabilities. According to the Centers for Disease Control and Prevention, “Obesity rates for adults with disabilities are 58% higher than for adults without disabilities.” (CDC) Furthermore, research shows that, among people with Down syndrome, 58% of children and more than 56% of adults don’t get the recommended amount of physical activity each day, with teens age 15 and older being the most sedentary of all age groups. (NCHPAD)
Finding access to fitness programming can be a challenge—for kids and adults with disabilities. In fact that was the impetus for Jared Ciner, NASM-CPT, to found SPIRIT Club (Social, Physical, Interactive, Respectful, Integrated, Teamwork), in 2013 in Kensington, Md. At the time, Jared was working as both a personal trainer and a support counselor for adults with developmental disabilities, tasked with connecting them with local resources, including fitness programming.
Working with people who have disabilities, says certified personal trainer Steve Ettinger, NASM-YES, is more energizing, uplifting and rewarding than people could ever imagine. In fact, doing so can be the perfect healing balm for personal trainers who are feeling the all-too-common effects of burnout that can surface from time to time. “I’m a big advocate for fitness professionals working with special needs populations and programs,” says Ettinger. “I think it would be amazing if every trainer gave an hour a week. That would be world changing.”
Here, these experts share their insights on how you can contribute to the health and fitness of people with Down syndrome, what you need to know to personalize their programs, and what it can mean for your career…and your soul.
Reducing the Financial Burden
Managing a disability includes expenses far beyond medical. There are many related costs, including travel to and from hospitals, parking fees, costs of testing, medications and others. “To be able to pay for a fitness program on top of that is sometimes very prohibitive,” says Winsborough. To eliminate this barrier, KEEN USA provides programming free of cost, paid for through donors, supporters, and fundraisers. Here are some ways other trainers can help reduce the financial burden of fitness for people with disabilities:
Help clients find funding. As a private business owner, Ciner works with his clients to secure funding from county, state, and federal agencies that are tasked with providing support to people with disabilities.
Provide services to government agencies. Healthcare and government agencies with their own internal budget sometimes hire fitness businesses to teach an exercise class or provide other programming to their clients.
Volunteer locally. Kids’ fitness expert Steve Ettinger began as a volunteer coach for KEEN USA and now serves on the coaches committee, which trains volunteers and oversees sessions. He first discovered KEEN when searching the Internet for local charities that serve kids with special needs.
Donate or fund-raise. Runners signing up for the 2017 Skechers Performance Los Angeles Marathon in March, for instance, can select KEEN as their charity of choice. The SPIRIT Club Foundation is a 501(c)3 that provides financial assistance to help people with disabilities take part in health and fitness opportunities. Other charities in your area may offer similar services or funding.
Doing Your Research
Whenever working with a client with a disability (or health condition), it’s a good idea to spend some time learning about it and the proper way to speak about it. For example, any person with a disability or health condition is a person first. So rather than saying “a Down syndrome child,” you should say “a child with Down syndrome.” The same is true for diabetes. You would say “a person who has diabetes,” not a “diabetic.”
Researching the subject can also help you dispense with any misconceptions. According to Kate Hurson, Executive Director at KEEN USA, many volunteers admit that they’re initially nervous about the preconceived notions they have, but that all goes away as soon as they’re paired with the athlete. “When the volunteer sees how excited the participant is to see the ball or the parachute, they very quickly realize, ‘Oh! This is just a kid! I can do this!’” explains Kate. “They realize that these people are, in fact, people. And they carry that new awareness with them into the workplace and into the community.” Stocking up on a bit of advance knowledge can help make that happen more quickly and provide you the tools you need to better serve them and their caregivers.
Understanding Health Constraints
Of course you’ll use the Physical Activity Readiness Questionnaire (PAR-Q) assessment to discover what medical concerns, medications, and other health issues might affect a particular client’s participation in a fitness program. Still, it can be helpful to have some idea of what to expect, especially since some “potential” or “high risk” factors might not wind up on that PAR-Q form.
People with Down syndrome have a higher risk of certain medical conditions, including abnormal energy expenditure and substrate utilization, anemia, congenital heart disease, impaired sympathetic response to exercise, mitral valve prolapse, thyroid conditions and hearing problems. (NCHPAD) Most people with Down syndrome also have some form of intellectual (cognitive) disability, which can range from mild to severe. (NDSS)
In addition to obesity, the National Center on Health, Physical Activity and Disability (NCHPAD) lists these as the physical characteristics of Down syndrome that are “most related to exercise.”
- extreme flexibility beyond normal limits (muscle hypotonicity)
- extreme flexibility of the joints (hypermobility or ligamentous laxity), which can increase the risk of subluxation and dislocation
- respiratory and cardiovascular systems that are underdeveloped
- short stature, with arms and legs that are shorter than is typical for their age and gender
- difficulty with balance and perception
The site further notes that “hypotonia and hypermobility are often associated with lordosis, ptosis, dislocated hips, kyphosis, flat pronated feet, forward head, and atlantoaxial instability (AAI).” A person with AAI is at greater risk for spinal cord injury and should avoid contact sports. (NCHPAD)
Taking Personality Into Account
In addition to having a parent or caregiver fill out the PAR-Q, also ask for some behavioral and personal insights. What are they hoping the participant will work on? What areas are they hoping will show improvements? What hints do they have for interacting with the athlete? “The biggest thing is finding out what makes them tick,” says Ettinger. “A lot of times, at any age level, something may be a most effective or efficient way to work out, but it’s neither if the person isn’t willing to do it.” Some tips here:
Use behavioral therapy and motivation techniques. A token reward system or progress chart can improve adherence for people with Down syndrome. Social reinforcement also helps motivate this population. (NCHPAD) Each KEEN session, for example, ends with “Prouds,” in which each participant states what they did that day that made them feel proud.
Offer visual and physical cues for movements. When Ciner wants participants with Down syndrome to reach their arms over their head, he’ll give them something to reach for, such as asking for a high-five. Instead of telling athletes to step to the right or left, he might place a ring on the ground and tell them to step outside the ring, then back in.
Consider a special certification. All of Ciner’s SPIRIT Club trainers have dual certifications in both fitness and behavioral strategies. Ettinger holds the Youth Exercise Specialization (YES) from NASM, which he says provided reinforcement for his interactions with young people while lending him credibility among fitness professionals.
Meet athletes where they’re at. “Down syndrome has quite a range,” says Hurson. “We meet athletes where they’re at, and have fun with their ability. If the participant has the ability to play basketball and shoot hoops, they will. If they are able to be pushed around in a wheelchair to get respiratory exercise and fresh air, then that’s what they’ll do.” Remember that each day will be different. Many variables can affect athletes’ performance and mood, including such things as whether or not they liked their breakfast. “Even if you worked with a particular athlete before, it’s always going to be a new experience,” she says.
Creating a Custom Program
People with Down syndrome benefit from augmented supervision. (NCHPAD) KEEN pairs athletes one-to-one with a volunteer coach or, if necessary, two coaches. Ciner also provides one-to-one services as well as small group classes. If you do choose to work with a small group, you may want to enlist the help of other trainers or even the caregivers of your athletes. Here, a few more tips:
Adjust according to their abilities. Ciner says that he recently created a new group class for three participants who were struggling to complete 10 minutes of a different hour-long class. Moving this trio into a separate group has enabled them all to enjoy a full 60-minute workout.
Monitor their intensity. When possible, blood pressure and heart rate should be monitored to check intensity and avoid early-onset fatigue. (NHCPAD)
Investigate recommended modalities. Walking, jogging, stationary cycling, and low-impact aerobic dance are good choices for people with Down syndrome. Resistance training using a circuit workout should focus on maximizing strength in large muscle groups. Avoid stretching and flexibility exercises due to hypermobility and joint laxity. (NCHPAD)
The NCPAD website offers additional specifics on cardio, flexibility, and resistance training exercises for people with Down syndrome.
Rethinking Goals and Outcomes
Many times, clients without disabilities are focused on appearance-related goals. Fitness professionals may have their own goals related to health and overall progress. When working with people with disabilities, though, the focus changes—and broadens to include all sorts of surprising positive outcomes.
“Maybe the kid had a great day; they ran off energy. If they have been participating in the program for a long time, maybe it’s now easier for their parents to take them to, say, a corporate picnic,” says Hurson, whose son (who has autism) participated in the KEEN program more than 2 decades ago starting at age 6. Adds Ciner, “We’re all people who have similar goals—to be healthy and functional and do our independent daily routines.” His goal is to keep these common objectives front-of-mind, while adapting the methodology as needed to suit each person’s individual needs.
One thing not to over-emphasize, says Ettinger, is praise for the accomplishment instead of the journey that led to it. Jumping atop a 20-inch box may equal a month of effort for one athlete, while another might find it easy to summit a 40-inch box on the first try. However, those achievements are far from equal to those athletes.
Beyond building muscle and skill, exercise strengthens a host of character traits, like perseverance, determination, optimism, team spirit and much, much more. These will serve your clients every day throughout their lives.
Working with someone with a disability can help put trainers more in touch with “the real reasons” they are doing what they’re doing, concludes Winsborough. In fact, it may be one of the greatest gains you make if you choose to add this to your own goals as a fitness professional. “Working with people with disabilities can really offer a sense of renewal for their mission as a trainer,” she says. “What you are doing really makes a difference in people’s lives.”
CDC (Centers for Disease Control and Prevention). Disability and Obesity. Accessed Oct 29, 2016. www.cdc.gov. http://www.cdc.gov/ncbddd/disabilityandhealth/obesity.html
NCHPAD (National Center on Health, Physical Activity and Disability). Down Syndrome. Accessed Oct 29, 2016. www.nchpad.org. http://www.nchpad.org/117/909/Down~Syndrome
NDSS (National Down Syndrome Society). Down Syndrome: Myths & Truths. Accessed October 29, 2016. www.ndss.org.