Caring for those in Need

Engaged & Empowered: Supporting People to Take Charge of their Health

The Engaged and Empowered Program is a wellness-based initiative for people with intellectual and developmental disabilities (I/DD) that both engages and empowers people with I/DD to take charge of their health. The program was created by The Arc Lexington.

BY The Arc Lexington | February 2023 | Category: Healthcare

Engaged & Empowered: Supporting People to Take Charge of their Health

The Arc Lexington is an innovative organization that constantly monitors the services it provides to find possible gaps in programming, or areas in need of improvement. 

Gina Warsaw, Senior Director and one of The Arc Lexington staff members integral to the creation of the program said, “We developed the Engaged and Empowered program in 2013 because we saw a need for better health outcomes for the people we support, while also looking to transform our day habilitation model into something that was more meaningful for people. In doing so, a wellness program made perfect sense and once we decided on that direction, we felt that it was important to build a program that was dynamic and evidence-based.”

People participating in the Engaged and Empowered program, about 650 people per week, are offered wellness activities on a daily basis, that encompass seven different dimensions of wellness: Physical, Social, Spiritual, Intellectual, Occupational, Emotional and Environmental. All activities can be modified for people with the sensory needs of autism, as well as for people with physical challenges. Activity examples include book club, music appreciation, poetry readings, and spirituality. An adaptive sports club, L3 (Living Life Without Limits), is part of The Arc Lexington’s Engaged and Empowered program that offers participation in adaptive activities such as: water skiing, sailing, downhill skiing, ice skating, zip lining, fishing, archery, roller skating and many other exciting and challenging sports activities.

Anchoring the Engaged and Empowered program was multiple-level wellness training of The Arc Lexington staff members, by Mayo Clinic. Mayo Clinic worked with these staff members to teach motivational techniques that helps them have the greatest impact on the wellness goals of the people they support. Three staff members were certified as Wellness Coaches by Mayo Clinic and they continue to lead the Engaged and Empowered Program.

When looking for evidence- and research-based health, and wellness programs for people with I/DD, The Arc Lexington found the University of Illinois’ HealthMatters™ and HealthMessages™ curricula. The authors of this program from the University of Illinois’ Department of Disability and Human Development provided staff members at The Arc Lexington hands-on training, in its techniques and curriculum to engage participants in actively learning about their health. This program was specifically written to be used with individuals with developmental disabilities and covers a large spectrum of wellness-based topics. HealthMessages™ is a program in which people with I/DD become peer coaches and lead groups. Both HealthMatters™ and HealthMessages™ are offered to everyone supported at The Arc Lexington. Participants with the most challenging health risks such as diabetes, obesity and heart conditions, are offered this program in a support-group format called Wellness Confidential, with skilled clinicians who are wellness coaches. Wellness Confidential is based on the principles of positive psychology that focus on positive experiences rather than on dysfunction, helping people become happier and achieve their full potential.

People who participate in the Engaged and Empowered program at The Arc Lexington complete a personalized health assessment and interest survey and develop an individualized wellness plan with the members of their team. The Arc Lexington collects data on wellness goals and looks at this data and people’s wellness plans every six months, to assess any possible needs for adjustments, as well as to celebrate wellness successes, large and small. In addition, every six months it collects biometric data on program participants to help steer the program.

Now in its tenth year, Engaged and Empowered has helped many people at The Arc Lexington, achieve their personal wellness goals and become healthier, which leads to not only physical and mental wellness, but also success in other areas of their lives. A selection of examples of how Engaged and Empowered has affected the lives of participants includes the following success stories. 

Allison Patnode joined the Engaged and Empowered Program at its inception in 2013. When she started the program, she was exhibiting severe diabetic symptoms, with multiple trips to emergency rooms, with high blood glucose numbers. These frequent ER visits and her ill health caused her to be depressed and experience social isolation. Since participating in program classes, activities and more, Allison has found great success, not only with her health and wellness goals, but also in her relationships, career and overall happiness. With the full support of her team at The Arc Lexington, she has been working on exercise goals, choosing healthy foods, and balancing her interests with her goals. She has taken control of her diabetes, and has experienced weight loss, and a reduction of ER visits related to her health complications. She sets her own goals and takes responsibility for achieving them, but also welcomes the supports she receives from many people at many levels at The Arc Lexington.

Allison has also made strides in her career by taking a job as a custodian. Her supervisors have been impressed with her work ethic, social skills on the job, and dedication to being on time, working productively and performing her assignments well. She is rightfully proud of her job success and loves the reward of getting a paycheck in exchange for a job well done.

Anyone who meets Allison at work, in her program, in her home, or when she is out getting some exercise, can see how well she is doing and how happy she has become through meeting the goals she has set for herself.

“Without The Arc Lexington and its wellness program, I would not be where I am today,” said Allison. “I cannot wait to see what this journey is going to become in the future. I know anything is possible if you keep looking up. I am so happy to have a job, friends, and my own apartment. I am now looking forward to an even better me!” said Allison. 

David Barton is one of the leaders of Living Life without Limits Club (L3), the adaptive sports club at The Arc Lexington. David has cerebral palsy and participates in a great number of adaptive sports activities through the club, including downhill skiing, using a Trek wheelchair to hike, zip lining, sailing, water skiing, and fishing for salmon on New York’s Pulaski River, to name a few. David has given presentations about L3 to a number of groups, both within The Arc Lexington and to its communities. He is up for any challenge, and advocates for his group and its members to access new sports opportunities, in New York State and beyond. When asked about participating in these sports activities, David gets emotional, “I feel awesome,” he said. “I feel like a bird, flying free. It makes me so happy and also helps me look forward to the future.” His favorite sports involve skiing – whether its downhill in the snow, or water skiing in the summer months.

“David is amazing,” said Bonnie Reuss, L3 Club Advisor and Physical Therapy Assistant at The Arc Lexington. “He always is willing to try new adventures and encourages the other members of the Club to do the same.” She continued, “When we go to the Adaptive Sports Center at Windham Mountain (Windham, NY), the volunteers know David by name, and know him as a skiing enthusiast, not as someone with a disability. He is a great champion and ambassador for our L3 Club with other self-advocates and to the community at large.” 

Mark Riley, who has autism, joined The Arc Lexington near the end of 2018. He came to the organization from a nursing home, and at the time was battling some serious health issues. Because he was at an unhealthy weight, Mark had difficulty walking, needed a special bed to sleep in, and his general activity and mobility overall were limited.

As Mark started to settle in to his new home, he began his journey towards better health, with support from his team at The Arc Lexington. Mark worked with an agency dietician to have a healthy diet, and learned ways to make good food choices to help him feel better and to lose weight. Mark started attending the HealthMessages™ classes through the Engaged and Empowered Wellness Program and learned about nutrition and healthier eating habits. At the same time, he chose to become much more physically active through walking clubs, volunteer work, and community activities. He also took part in cooking classes to learn how to make healthier meals at home.

Mark has been able to meet his personal wellness goals to be more active and to eat better and has lost over 250 pounds! His remarkable work in making healthier choices has affected his entire life in many positive ways. Mark is observed to present himself with far greater self-confidence in social situations. His ability to be more mobile and feel better about himself has truly changed him. He continues to stay active and engage in a healthier lifestyle through a combination of all of these supports provided by his entire team at The Arc Lexington. Mark’s wellness story also inspired and led one of his support staff members to lose 50 pounds.

Callyn Groff is a young man who participates in day habilitation programming at The Arc Lexington. The COVID-19 pandemic was hard on everyone, but Callyn found it especially challenging when his day program at The Arc Lexington was shut down for everyone’s safety. When restrictions lifted and Callyn returned to his program, he was determined to work on his new wellness goal, which was to stay physically active throughout his day, as well as to be more active in the planning of what he did throughout the day. Prior to the pandemic, Callyn’s physical activity consisted of some basketball drills and playing baseball, but only a couple of times per week. At that time, he spent a lot of quiet time indoors on his iPad, and preferred wearing headphones while doing so. When he was able to return to his program, he found he had a new staff member, Pete Giblin. Pete, who is trained in the Engaged and Empowered techniques, started encouraging Callyn to go for short walks on a local bike path. Their walks became longer, and they soon started discovering many of the other recreational trails and paths in the community, and then in the Adirondacks close to where The Arc Lexington is located. These walks and hikes improved Callyn’s health, while also developing in him a love of the outdoors. His team observed that these walks and hikes helped Callyn to feel better about himself and to be less stressed. In fact, Callyn came to enjoy hiking and walking so much that he started Club 72 to encourage people to hike the 72 local trails. He is the President of this new Club that has 15 members, so far. The Club presents awards as members complete hikes on specific numbers of trails, and encourages club members to take photos to document and share with other walkers and hikers. Winter has slowed down the club a bit, but Callyn and his group are really looking forward to spring when they can add even more trails to their travels.

Callyn’s life has changed in such a positive way, and it shows. In fact, the positives that he has found on his wellness journey can be summed up in a letter The Arc Lexington received from his mother. “There aren’t enough Thank Yous on the planet….I can’t say enough about Pete and how he treats my boy. He is patient and flexible and respectful beyond words. This new life for Callyn is a game changer and I am so excited for his future!”

These are just a select few of the dozens of health and wellness success stories that people with developmental disabilities have found through the Engaged and Empowered health and wellness program at The Arc Lexington. The organization has learned through this program that for people with I/DD, participation in simple health and wellness changes can have a dramatic impact on many other areas of a person’s life.  

Footnote: The University of Illinois HealthMatters™ Program curriculum is available in two books that can be purchased on Amazon for people who may want to reference and use this research-based, field-tested program. The books are entitled Health Matters for People with Developmental Disabilities: Creating a Sustainable Health Promotion Program by Beth Marks, RN, Ph.D., Jasmina Sisirak, M.P.H., Tamar Heller, Ph.D. and Beverly McElmurry and Health Matters: The Exercise and Nutrition Health Education Curriculum for People with Developmental Disabilities, written by Beth Marks, RN, Ph.D., Jasmina Sisiraak, M.P.H. and Tamar Heller, Ph.D. 

Read the article here.