A panel discussion at #APHA24 Tuesday highlighted the importance of including people who have intellectual and developmental disabilities in conversations and decisions about their health.

“Nothing About Us, Without Us: Centering Intellectual and Developmental Disabilities and Equity for Public Health” was hosted by APHA’s Center for Public Health Policy, which has created resources about intellectual and developmental disabilities in public health. 

Mackenzie Jones, a health education specialist at the Montana Department of Health and Human Services, said she and the people she works with take a person-centered approach to including people with intellectual and developmental disabilities. 

“We don’t think about the diagnosis; we think about the person and their support needs,” Jones said. 

When planning initiatives for the Montana DHHS, Jones said she strives to get input through pre-meeting meetings and post-meeting reviews with people with disabilities. This helps people feel empowered and included in the process, according to Jones.

One of the more recent projects Jones has embarked on is a street audit for transportation accessibility. Walkability is not the only factor taken into account, but also safety and accessibility for people who may be using a cane or wheelchair or are on a bicycle. 

People in the community are invited to use the sidewalks for these audits to get a firsthand experience. Afterward, they are asked to rate their experience on a scale from one to 10. The input is then used in community planning to improve safety and accessibility.

Happy — and healthy — campers 

Becky Larson, an assistant professor at Mercer University, discussed how she and her students became involved in creating a nutrition program for youth at Camp RAD (Recreation for Adolescents with Disabilities). Larson, whose daughter is autistic and attended the camp, wanted to empower youth with disabilities to live healthy, independent lives while also gaining valuable life skills. 

During the day at camp, campers were offered snacks such as pretzels or apples, but the food wasn’t a hit with everyone. Many people who have autism spectrum disorder or intellectual or developmental disabilities have sensory issues around food and will avoid certain foods all together, Larson explained. Because of this, people can experience inadequate intake of fluids, fiber, vitamins and minerals, she said.

Larson and her team made a plan to have campers make their own snacks, such as pizza bagels or trail mix. This gave them more independence and control over what they were eating. And, the act of making their own snacks helped campers develop fine motor skills by cutting fruit or spreading cream cheese. 

The family tree

Michelle Mattison, with the University of Minnesota School of Social Work, spoke from her personal experiences as the mother of three young boys, two of whom have disabilities. She opened her presentation with an image of a tree, comparing it to caring for her sons: Like roots of a tree, there is a lot that goes on under the surface to make the tree thrive.

She said one important lesson she learned was to pay attention to her sons’ behavior and “let them lead us.” When Mattison and her husband began to worry when their oldest son wasn’t talking or developing as fast as other children, they instead re-framed it as him “doing things in his own time.” As he grew older, Mattison and her family began searching for doctors, which wasn’t an easy or quick process. 

“We saw, no exaggeration, more than 20 doctors to try to find the right fit,” Mattison said. “We wanted to find someone who wouldn’t box him in or only see his limitations.”

Mattison’s middle son, who is neurotypical, is also affected by his brothers’ conditions, but he has expressed feeling pride in taking care of them and helping them communicate and understand the world around them.

One of the tougher things about this experience was figuring things out as they went, Mattison said. 

“Nobody signs up to be a caregiver,” she said. “And nobody gets a handbook for parenting to begin with.”

Photo by Halfpoint, courtesy iStockphoto.