By Mary Kay Rizzolo, CQL President and CEO
The pursuit of best possible health is both personal in its understanding and subjective in its application. If you think about it in terms of your own health and the health of those around you, your sibling may have a completely different idea of a healthy lifestyle in comparison to how you view a healthy lifestyle. While your brother may broadly prioritize the prevention of significant infections or ailments, you yourself might focus on exercise regiments to stay fit and strong.
The concept of best possible health is outlined in CQL’s Personal Outcome Measures®, where it is stated that Best Possible Health is “individually defined by each person, given his or her unique characteristics.” Beyond just the individualized nature of realizing someone’s definition of health, the Personal Outcome Measures® lays out that “health care interventions for people are personalized and effective.” Part of this value is the inherent belief that organizations should embrace the self-management of health and wellness by people receiving agency services, providing supports for people to direct and manage their own health care. According to CQL’s Basic Assurances® self-management of health refers to “people receiving supports being involved in their own healthcare, including decisions about healthcare providers and the services they receive… all people receiving supports should be afforded the same choices in healthcare available to others”
In this edition of Capstone e-Newsletter, our contributors are offering detailed information that can be useful in ensuring that the services agencies and supporters provide are both individualized and promote self-management of health and wellness. In the first section we share an overview of self-management, followed by an examination of variables that correlate with people being less likely to self-manage their own health, involving race, decision making authority, support needs, and more. Then, a guest contributor from Lexington, Chapter of The Arc New York, outlines the programs within their organization that are making a difference in people’s lives. Finally, a tech-savvy staff member from The Arc Westchester lists a number of apps that can potentially help organizations and individuals manage their own health in effective and efficient ways.
Self-Management: What Does It Really Mean?
By Angela Rapp Kennedy, CQL Vice President of Special Projects
Even as we embrace the value of supporting people to direct and manage their own healthcare, we continue to struggle with how to operationalize that value. The first step is to agree that it is right and necessary, then we set expectations, and finally, provide tools, opportunities, and support.
Expectations include that everyone being supported has the right to choose which medical providers they use (regardless of how rural the area is in which they live), when their appointments are set, who will accompany them, as well as what sort of information they need before and after the appointment. Those expectations also include being able to decide who has access to their health information, who will discuss it and when, as well as if and how, they will put any recommendations into practice. Yes, they have the right to do what the doctor says or not, just as anyone else. While organizations are likely worried about increased liability, the best support involves balancing duty of care and dignity of risk. It is the organization’s responsibility to support the person to understand the risks and benefits to reduce this risk, rather than take away their choices altogether.
Many will agree – at least in theory and to some degree – with this list of expectations as long as the person is someone who uses words to communicate. Often the expectations are disregarded if verbal language is not how a person communicates. Shame on us, if that is the case.
Tools can be low tech using plain English, pictures, videos, experiences, and conversations. They can also be high tech, which is quite accessible and increasingly affordable. This Capstone just scratches the surface in all that is available to assist in your efforts to support people to truly self-manage their healthcare. Opportunities and support might be viewed in short supply with the ongoing staffing challenges organizations routinely face. Supporting people in this manner may also seem time-consuming, but the return on investment yields so much in terms of rights, respect, relationships, choices, and more. Many of those same benefits accrue to the staff who are supporting people in this endeavor, as many direct support professionals are woefully uninformed and unempowered in terms of managing their own health care as well.
As is so often the case, the solution is not necessarily the development of some new multi-faceted program and system, but rather taking one small step in the right direction. One example is simply assisting the person to participate in scheduling their next appointment right there at the desk when at an appointment, so that the person can be consulted as to which provider they prefer, which day/time is best, etc. There are so many small steps available for you to take. Here are two resources that provide some tools that might be helpful as you take that small step, and the next one, and the next one…
The Guide to Getting & Using Your Health Records
“The Guide to Getting & Using Your Health Records is for patients, parents, and caregivers who want to get their health records. A health record (also known as a medical record) is a written account of a person’s health history, including appointment notes, prescriptions, treatments, tests, and vaccines. It’s also for people who need the record of someone they represent or care for, like a child, elderly parent, or an adult with a disability.”
The Patient Education Materials Assessment Tool (PEMAT)
“The Patient Education Materials Assessment Tool (PEMAT) is a systematic method to evaluate and compare the understandability and actionability of patient education materials. It is designed as a guide to help determine whether patients will be able to understand and act on information. Separate tools are available for use with print and audiovisual materials.”
Disparities In Self-Management of Health
By Carli Friedman, CQL Director of Research
Although self-management of health is important, many people with disabilities are not given the ability to do so. For this reason, we were interested in exploring disparities in the self-management of health – who was least likely to be supported to self-manage their health – so these disparities can be targeted and reduced. To do so, we analyzed Personal Outcome Measures® interviews from CQL’s PORTAL Data System from approximately 1,300 people with intellectual and developmental disabilities (IDD) using a binary logistic regression model to determine who was the least likely to be supported to self-manage their health. The following variables were significant:
- disability type
- decision making authority
- residence type
- average hourly support
- service provision through a managed care organization
Findings revealed that compared to White people with disabilities, Black people with disabilities were 1.6 times less likely to be supported to self-manage their health. People with disabilities who were Asian, Pacific Islander, Native Hawaiian and ‘other’ were also 12.5 times less likely to be supported to self-manage their health than White people with disabilities.
Approximately 20 different disability types were also explored to see if there were any disparities. There were only significant differences for people with personality/psychotic disorder, who were 1.8 times less likely to be supported to self-manage their health than people with other disabilities.
There were also large disparities for people with assisted decision-making and full/plenary guardianship. Compared to those with independent decision-making, people with assisted decision making were 3.6 times less likely to be supported to self-manage their health, and people with full plenary guardianship 1.8 times less likely.
In terms of residence type, people with disabilities who lived in family homes were 1.9 times less likely to be supported to self-manage their health than people with disabilities who lived in their own homes.
People with the highest daily support needs – 24/7 around the clock support – were also significantly less likely (4.0 times less) to be supported to self-manage their health than people with supports as needed (on call).
Finally, people who received services from a managed care organization were 1.9 times less likely to self-manage their health than people not receiving services from a managed care organization.
By attending to these disparities, organizations can ensure all people with disabilities have equal access to self-manage their health.
Health and Wellness at Lexington
By Gina Warsaw, Director of Day Supports, Lexington Chapter of The Arc New York
At Lexington, a chapter of The Arc New York, supporting people to have the best possible health is a core value that we work toward every day. Five years ago, Lexington decided to use health and wellness as a platform for its programs and services. A committee made up of people receiving services, families, medical professionals, clinicians, and support staff, and led by the agency’s medical director, carefully reviewed the health statistics of people receiving services. Next, this committee researched a variety of health and wellness programs as well as evidence-based curricula that had demonstrated success with people with disabilities. Based on this research, Lexington developed its Engaged and Empowered wellness program.
Today, the Engaged and Empowered wellness program serves as the foundation of many of Lexington’s support services. The primary goal of this program is to help people achieve their health goals. Lexington worked with the University of Illinois to provide education materials and with the Mayo Clinic to train more than 60 staff on motivational interviewing techniques that help us engage people to achieve their goals.
The Engaged and Empowered wellness program is designed to explore, develop, and support an individualized wellness plan for each person. The program addressed seven dimensions of wellness, and each of Lexington’s programs offer corresponding daily activities to help incorporate wellness into every aspect of a person’s life, regardless of their support needs.
THE ENGAGED AND EMPOWERED 7 DIMENSIONS OF WELLNESS
- Emotional – art, music, dance, stress-relieving activities, etc.
- Physical – yoga, hiking and walking clubs, sports, adaptive sailing, adaptive skiing, creative movement, etc.
- Spiritual – aromatherapy, lotion therapy, sensory activities, religious learning, etc.
- Intellectual – hobby clubs, nutrition classes, educational outings, etc.
- Social – cooking, gardening, gaming clubs, women’s and men’s social clubs, etc.
- Occupational – volunteering, hobby clubs, career exploration, etc.
- Environmental – community cleanup, recycling, landscaping, outdoor activities, etc.
The program begins with a Personal Health Assessment, which is designed to assist each person to identify their health challenges such as sleep, eating habits, exercise, stress, etc. Based on this information, the person determines the goals they would like to work on.
Next, the person is supported to complete an Interest Survey, which identifies a variety of activities within each of the seven dimensions of wellness. It is key to find activities that the person is interested in exploring, which are adapted as needed to ensure successful engagement.
The last component of this process involves selecting community-based wellness activities, clubs, and programs for the person to participate in to help facilitate a community connection. This has proven very effective, not only helping with long-term success of the specific wellness goals, but also leading to social opportunities and true community inclusion.
The information gathered from these three components is presented to the person’s support team, where the individual guides the design of their individualized wellness plan. The team’s focus during these meetings is to ensure the person’s wellness goals are fully integrated into each area of services.
An example of how these supports come together involves a young man by the name of Mike. Mike has struggled with a number of health challenges over the years but lacked interest in making any life changes. Mike’s support staff, using Motivational Interviewing, worked with him through the Engaged and Empowered assessment process. As a result, Mike identified weight loss as his top priority and decided to participate in a health curriculum called Health Matters. This wellness program is offered in conjunction with the local community college, Fulton Montgomery Community College and is a 12-week program. During his participation in this program, Mike took steps to increase his exercise by walking and made changes to his diet by drinking more water and making healthier food choices. At the conclusion of the program, Mike had lost 13 pounds.
Another example involves support staff Debbie using motivational techniques to encourage Sue to join Weight Watchers alongside her, after Sue set a goal to lose weight. Sue has had great success in the program, and thanks to her hard work and Deb’s support, she lost so much weight that she has been able to buy two new wardrobes and discontinue two medications.
In addition to the initial assessment and planning process that encourages people we support to set their own goals and work toward them, we offer a number of programs, training sessions, and activities to give them the structure, education, and motivation they need to succeed. Listed below are a few things we provide, along with information about how you can implement them into your programs.
(The listing below does not imply an official endorsement by CQL | The Council on Quality and Leadership. The listing below is a sharing of available resources, not an advertisement of products)
My Health, My Choice, My Responsibility
My Health, My Choice, My Responsibility is a program that trains people with developmental disabilities to become health self-advocates. The curriculum covers topics from exercising and eating right, to taking charge of one’s health. It has a focus on making healthy choices in daily life and speaking up for good health. A staff trainer and a self-advocate trainer facilitate the program together. After a person completes the program, staff support them to implement what they learn in their everyday life. They help people take medications independently by encouraging them to set up and maintain their own medipacks. Staff also help people take charge of their appointments by supporting them as they collect and organize any necessary paperwork, make calls to schedule appointments on their own, and write down appointment dates and times in calendars and planners. Staff may provide small reminders to make sure the person does not forget about their medications or appointments, but this often becomes unnecessary over time as they learn to attend to their own health independently.
The curriculum for My Health, My Choice, My Responsibility is provided by the Westchester Institute for Human Development. It is available to download as a PDF at www.wihd.org.
HealthMatters & HealthMessages
HealthMatters is a health education curriculum that aims to improve the health of people with intellectual and developmental disabilities by empowering them with knowledge, tools and personalized health resources. Lexington has been teaching it for more than five years. Attending HealthMatters gave Mike the motivation and knowledge he needed to lose weight. The program taught him fun methods of staying active through his lifestyle and interests, such as walking and playing basketball. It also included simple changes he could make to his diet to eat healthier, such as consuming salads and water instead of subs and soda. As a result, he has lost a significant amount of weight and gained more confidence and independence.
HealthMessages is a peer-to-peer training program that teaches people with developmental disabilities about health and prepares them to pass on lessons about physical activity, hydration, and health advocacy to their peers. Lexington was part of HealthMessages’ initial pilot group and has been teaching it for two years. Shawn took this course and was so inspired by the material that he immediately signed up to be an instructor. Now he teaches the class to his peers and has adopted a healthier lifestyle based on what he learned in HealthMessages to be a good role model to his students.
HealthMatters and HealthMessages are offered by the Institute on Disability and Human Development at the University of Illinois at Chicago. Download resources and purchase curricula at www.healthmattersprogram.org.
Additional Wellness Activities
Lexington’s Wellness program sponsors regular Wellness Together Challenges that pair people we support with staff who support them to reach health goals. Common themes of the challenges are logging certain amounts of exercise activity per week, eating healthy foods a certain number of days a week, avoiding unhealthy foods, and losing or maintaining weight over a period of time. Participants are incentivized through awards for finishing, and motivated by the encouragement of their peers and Wellness Buddies.
Lexington also holds a number of health and exercise-themed activities throughout the year, from an annual ‘fun run and walk’ to contests within the programs. One such contest gave Alan the motivation he needed to focus on physical therapy and regain his strength after his mobility was affected by medical issues. When he saw a flyer for Lexington’s March Madness walking contest, Alan became determined to win and practiced hard for three weeks. At the event, he completed 25 laps around the track to earn the top prize.
Technology To Support Self-Management
By Jordan Jankus, Coordinator of Person-Centered and Cognitive Supports, The Arc Westchester
Let’s start with the picture of a person who is told at breakfast that she has a doctor’s appointment at 10:00 a.m. and she can carry her “book” of her medical and health history to the appointment. Now, let’s update that picture and envision a person who checks her smart phone and sees that she has her annual physical tomorrow, so she wants to be sure she’s ready with questions for her doctor and has a way to remember his advice and instructions.
Two very different scenarios that deal with the Personal Outcome Measures® indicator, ‘People have the best possible health.’ In the first case, this clearly isn’t a person-centered approach. The person who is told by staff about her upcoming doctor’s visit might not have any idea of what type of appointment she’s going to, or why it’s important. It seems obvious that we all should encourage people to be involved in their own personal health plan. They are experts on themselves!
Fortunately, personal technology (apps, smart phones, and tablets) is now providing us with many exciting and affordable tools that can help people better manage their personal health services. We’ll illustrate just a few new technology tools below to give you a sense of new possibilities for individualized, person-centered health advocacy. These are all part of the rapidly expanding field of mHealth (mobile health) a term that has been coined for the use of mobile devices and other wireless technology in medical care. Please keep in mind that this is a rapidly evolving field and some of the standards of information privacy may vary with each app, so make sure that you’re aware of how your sensitive data is protected.
(The listing below does not imply an official endorsement by CQL | The Council on Quality and Leadership. The listing below is a sharing of available resources, not an advertisement of products)
Medical Overview Apps
It’s important for a person to take care of their personal health, but they need information to do that – medical history, medications taken, etc. In addition to the standard calendars, to-do lists, and reminders on most devices, there are some apps that consolidate all of your health info.
The free apps CareZone and Capzule help you collect all your personal and family medical history into one place, along with medication information (CareZone allows you to easily scan your medicine bottles via your smartphone’s camera), medication reminders, input tracking information on things like blood pressure and blood glucose, a daily health diary, a journal to track how you’re feeling, and a list of questions to ask your doctor during your next visit.
Since these apps are free, sometimes a user might become distracted by the occasional advertisements and need to redirected back to the task at hand. Despite this, it seems the overall benefits of the apps outweigh the inconvenience.
Tracking Apps & Smart Device Connections
Besides the manual entry of biometrics like blood pressure and glucose levels, many testing devices are now coming to market that allow you to connect your smartphone to the testing device and have the data automatically entered into a related app on your device.
The Dario Health Glucose Monitoring System (iOS & Android) connects to your smartphone and lets the information about your blood samples be recorded immediately into the related app for sharing with you and your doctor. Your sleeping habits and possible apnea issues can be monitored via the Phillips DreamMapper App (iOS) that takes and analyzes information from Philips CPAP devices. HeartStar BP Monitor App from Pattern Health allows you to connect a compatible Bluetooth blood pressure device with the app and automatically have a record of your BP readings on your device that you can share with your doctor.
Healthy Eating & Exercise
Visual Exercise System (iOS) by Exercise Connection Corporation
The ExerciseBuddy iPad app was designed for people with autism in mind, but it is a great tool for everyone. While it is does cost around $30, it seems to be a good investment with visual guides that take you through the steps of each exercise.
Half My Plate (iOS)
Developed by Southern Nevada Health District
This Half My Plate app allows you to track your daily fruit and vegetable intake, with the goal being to help you meet your USDA daily recommended amounts. It includes a variety of simple and healthy recipes that you can prepare.
Developed by Hot Pink Inc. and the South Dakota Dept. of Health
Munch Code! is a fun app that helps you discover what food and drinks are “green” (eat a bunch), which ones are “yellow” (have just a little) and which are “red” (not so much). It is interactive with limited literacy required, along with accompanying fun audio prompting.
Developed by Schenectady Arc
MyFoodBasket is an app that provides a visual shopping tool that allows you to click on pictures – cereals, vegetables, etc. – and assemble a shopping list for your trip to the grocery store. It can also provide a great way for people with various communication methods to express some of their food choices.
Benefits of mHealth
These items are just a few of the examples of the exploding field of mHealth. There is so much more out there – wearables, smart home devices, social robots, AI, mood trackers and the Internet of Things (iOT) sensors. We are fortunate that the expansion of mHealth is happening at the same time that, through the tenets of CQL, true personal health advocacy can now lessen the need for more traditional supports. Health is now, and always should be, about personal choice.