Fall 2018 DHP News

In this issue:Logo for the Disability and Health Program. An orange graphic of a person with their hands held up, with blue stars arching between the hands and above the head. Underneath, it reads, "Kansans with disabilities can be healthy."


Greetings from the Director

Jean Hall, Director of the Kansas Disability & Health ProgramThank you for your continuing support of and interest in the Kansas Disability and Health Program. As you will see below, it has been a busy year, with lots of great work accomplished. Please let us know if you have any ideas for additional outreach or activities for us to pursue in the coming year. We have already expanded our work in two programs based on feedback from our partners and others.

Wishing you all a safe and healthy holiday season and new year!

Jean Hall, PhD
Director, Kansas Disability & Health Program
 

Stoplight Healthy Living Reaches New Participants

Graphic: A stoplight, with the words "Go" "Slow" and "Whoa!" using the lights as the letter O in each.Seventeen people with intellectual and developmental disabilities (IDD) from SLI-Topeka are now participating in our six-session Stoplight Healthy Living Program, which will conclude in December. These individuals live in their own homes and attend activities at SLI, so this program is a great fit for their regular gatherings on how to stay healthy. Three staff members are also attending, to assist and learn how to deliver the program.

The overall goal of Stoplight Healthy Living is to help participants understand the impact of nutrition and exercise on their lives. Even small changes to their daily routines and diets will help them improve on their health.

In addition to setting increased physical activity goals, participants learn how to eat the "Stoplight Way," which assigns stoplight colors to groups of foods. Green foods are GO. These include most fruits and vegetables. Yellow foods, like rice and pasta, are SLOW foods. They can be part of a healthy plate, but not too much or too many. Red foods are WHOA-STOP. These include cake, cookies, chips, ice cream, etc. - foods high in fat, sugar, and calories.

The Stoplight Healthy Living Program includes a variety of activities to engage participants:

  • Putting green, yellow and red stickers on foods in participants' pantries to reinforce the food groups
  • Demonstrating healthy portion sizes using one's hand (e.g., a healthy serving of protein is the size of one's palm)
  • Tracking steps with a pedometer and water consumption with a log
  • Understanding how many drinks contain sugar through a Sugary Drinks display
  • Role-playing how to order a healthier meal at a fast-food restaurant

In 2019, the DHP will hold a training of trainers so that other agencies can deliver the Stoplight Healthy Living program to Kansans with IDD around the state. If you are interested in holding a training session, contact Kim Bruns at kbruns@ku.edu.

Coming Soon: Oral Health Training for People with Mobility Limitations

Graphic: Cartoon drawing of a large tooth brushing a smaller tooth with a toothbrush. Both teeth are smiling.The DHP's partnership with community organizations can take us in unexpected - and wonderful - directions. In response to several consumer organizations that expressed a need, the DHP is collaborating with Oral Health Kansas to develop a new oral health training for people with mobility limitations. This training will expand upon the information and skills that the DHP has delivered to people with intellectual and developmental disabilities in the workshop "Feeling Good About Your Smile."

For better or worse, oral health affects a person's overall health. When one's teeth and gums are not healthy, a person is at greater risk for heart disease, diabetes and infection. In addition to imparting knowledge, this new training will address practical techniques related to dexterity and other barriers that participants may encounter to practicing good oral hygiene.

This training will be field-tested in spring 2019. We'll let you know when the program is ready for other participants.

Advisor Profile: Nena Murphy-Herd Takes the Path of Self Advocacy

Nene Murphy-Herd and her service dog, Tor."I was lucky to be raised by a mother who was a nurse and a woman who believed in ability," said Mariangeles "Nena" Murphy-Herd. "My mom was an incredible advocate for my experiencing a 'normal' life. She didn't let the doctors sideline me just because I had other needs."

Murphy-Herd contracted polio when she was 18 months old, and suspects she was born with cerebral palsy (based on her very premature birth in 1947 and descriptions of her physical development as a baby). Now, with arthritis also part of her post-polio experience, she laughed, "I have the trifecta."

As a member of the DHP's Consumer Advisory Board (CAB) and as the sister, cousin, niece and grandchild of physicians, Murphy-Herd is especially attuned to the program's work to educate medical professionals about healthy living for people with disabilities.

"For most doctors, we're a diagnosis. They don't have training on what people can do beyond their disability." However, she found that "if you are proactive about your needs, medical professionals will generally support you."

In one case, a doctor wanted to perform surgery on her knee and another doctor disagreed. The second doctor understood the way her body had adapted to functioning and knew that a surgery supposed to correct her joint to "normal" would actually be counterproductive.

Although surgery helped in other instances, she stressed the value of "shopping around" for physical therapists and physicians who believe a person with a disability can improve, instead of taking the too-common attitude, "This is the body you're stuck with." She worked with one doctor who used Botox and stretching instead of surgery on her foot, which made a lasting difference in her balance, gait and ability to walk.

Dogs are also an important part of Murphy-Herd's proactive approach. She always enjoyed dog training and had a large retriever who learned to help her at home when she fell. After that dog died, her small Standard Poodle, Soda, expressed an interest in helping. Because Soda was very socialized for going into the community, she became Murphy-Herd's first full-time service dog in 2002. That was also the year she started using a wheelchair.

Together she and Soda learned to overcome obstacles that non-disabled planners simply didn't consider, like an electric door opener at her workplace that was located in the middle of a courtyard instead of near the door. Now Tor (for Tornado, pictured above), a larger Standard Poodle, accompanies her on outings as a service dog, in addition to enjoying agility and rally classes with her.

Now retired, Murphy-Herd dedicated her career to working with children with disabilities. Originally from New York City, she came to the University of Kansas (KU) for a position as a rural specialist, working with children with multiple severe disabilities. She also worked for the Capper Foundation, for the State in deaf-blind outreach, and on a grant-funded deaf-blind project at KU.

Murphy-Herd appreciates the people who encouraged her independence. It started with her family, and today, she says, "There is so much I couldn't do if I didn't have my husband's support. I have to thank him for helping every day with my exercises. Life without a support system would be much harder."

She brings this knowledge to her work with the DHP project, where the diverse board members offer many perspectives on how Kansans with disabilities can learn to advocate for their health needs.

CHECing Out Access at Veterinary Hospitals

In the fall of 2017, the Kansas DHP worked with five centers for independent living (CILs) in the state to complete 10 CHEC assessments of health care and fitness facilities. The Community Health Environment Checklist (CHEC) is a tool for measuring how usable public spaces are for people with disabilities. (Read our Success Story). We are now working with additional CILs to conduct a new round of CHEC assessments into early 2019.

Dr. Kate KuKanich and Emma Winkley of Kansas State UniversityHowever, the DHP hadn't planned to assess veterinary hospitals - until a veterinary associate professor from Kansas State University, Dr. Kate KuKanich (on left in photo), and one of her students, Emma Winkley, asked if they could use the CHEC. (They learned about the tool from our poster at the Kansas Public Health Association conference.)

Of course, veterinary hospitals are important health care sites that people with disabilities often visit, so this new use of the CHEC is a welcome addition for our statewide project. In 2018, Winkley and KuKanich assessed ten veterinary hospitals located within 85 miles of the Manhattan area.

They also created a tip sheet, "Top 10 Ways to Maximize the Usability of Your Veterinary Practice for Clients with Mobility Limitations." Their checklist will be publicly available after publication of their journal article about the CHEC experience.
(Photo by Joseph Montgomery)
 

New Resources Online

These resources have been created by DHP staff members. You can find them on our website at DHP Resources - and feel free to share widely!

  • "Take Charge of Your Own Health!": This infographic encourages self-determination for people with IDD. It compares the effects of good and bad health habits, and provides resources for finding more support to eat well, exercise more, etc.
  • Knowledge Is Power: Data for Advocates (PDF): This document identifies sources of data at the national and state levels. The tools included here can be extremely valuable in preparing grant proposals and creating programs that address real needs, along with other information about health disparities, employment and more.
  • Making Homes Visitable: A Guide for Wheelchair Users and Hosts: All too often, steps and other environmental barriers contribute to social isolation for people who use mobility devices, which may contribute to depression or other health problems. Dot Nary and colleagues created this guide, which provides tips for making visits possible and ideas for how to start a conversation about visiting.

Peer-Reviewed Publications

These articles in national publications, which have been reviewed by other researchers, advance our knowledge of the experiences of people with disabilities.

Jean Hall and colleagues published "Medicaid Expansion as an Employment Incentive Program for People With Disabilities" in the American Journal of Public Health (Sept. 2018). U.S. News & World Report featured the study's findings that there is a higher rate of employment among people with disabilities in states where Medicaid has been expanded. In September, Hall also presented this research at an interdisciplinary KU forum called "Red Hot Research."

Hall and colleagues also published "Oral Health Needs and Experiences of Medicaid Enrollees with Serious Mental Illness" in the American Journal of Preventive Medicine (Oct. 2018). This study investigated the experiences of Kansas Medicaid enrollees with serious mental illness in accessing dental services, examined their oral health risk factors, and identified oral health needs and outcomes.

Presentations

DHP staff members present at state and national conferences. If you're interested in learning more about any of the topics mentioned here, just contact us.

  • At the Kansas Public Health Association (KPHA) conference in Wichita in October, Dot Nary presented "Facilitating Participation of People with Disabilities at Public Health Events: A How-To Guide" on panels at two different sessions. She notes that people with disabilities are often excluded from public health-related events where their voices need to be heard and, as a result, community interventions may not meet their needs, even though significant health disparities for this population persist.
  • Jean Hall presented a poster at the KPHA conference about our work: "The Kansas Disability and Health Program: Addressing Health Promotion and Physical Activity for Kansans with Disabilities."
  • Dot Nary and Kim Bruns presented "Stoplight Healthy Living Program" at the annual InterHab conference, also in Wichita in October. InterHab is the state association for providers of community services to Kansans with developmental disabilities. They described the Stoplight program to attendees, and engaged them in a discussion about barriers and facilitators to healthy lifestyles for people with intellectual and developmental disabilities from the perspective of service providers.
  • At the Association of Programs for Rural Independent Living (APRIL) conference in Denver in October, Noelle Kurth was a panelist on "Understanding Medicaid Policy and Introducing the Disability Stories Project." Jae Kennedy, Richard Petty and Elizabeth Wood were co-presenters.

Like Us on Facebook

Graphic: A hand showing a thumbs up.Join us in conversation on Facebook. Just look for the Kansas Disability & Health Program.
We share tips related to a healthy lifestyle, focusing on physical activity, oral health and nutrition.

For More Information

Kim Bruns, DHP Program Coordinator
kbruns@ku.edu
http://ihdps.ku.edu/dandhkansas
The University of Kansas
Institute for Health and Disability Policy Studies
1000 Sunnyside Ave.
Lawrence, KS 66045

This newsletter was supported by Grant/Cooperative Agreement Number DD000006 from CDC National Center on Birth Defects and Developmental Disabilities, Disability and Health Branch. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC, NCBDDD, Disability and Health Branch.


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