Community Activated Living Well

Man walks down the sidewalk using crutches.  His Labrador Retriever waits ahead.

 

A Guide for Implementing the Living Well
with a Disability Health Promotion Workshop
for Community Members who have Disabilities

 

Table of Contents

Acknowledgements

Introduction and Overview of the COALW process

Phase I: The Catalyst

Phase II: Planning for the Workshop
Steering Committee Meeting 1

Steering Committee Meeting 2

 Steering Committee Meeting 3

Steering Committee Meeting 4

Phase III: Implementing the Workshop
Steering Committee Meeting 5


 Acknowledgements

We would like to thank the following individuals for their important input in reviewing and implementing these guidelines.

Kathie Bach
Bobbie Becker
Living Independently for Today and Tomorrow
Glendive, Montana

Les Clark
Montana Independent Living Project
Helena, Montana

Harold Eyre
North Central Independent Living Services
Black Eagle, Montana

Flo Kiewel
Summit Independent Living Center
Kalispell, Montana

Special appreciation for the support and leadership of Tom Seekins, PhD, Principle Investigator and Meg Ann Traci, PhD, Project Director of the Montana Disability and Health Program.

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Introduction

Many communities are working on ways to become healthier places to live. Some communities have developed walking and biking paths, others have created community awareness campaigns promoting the benefits of healthy eating and daily exercise. There are many ways that we can make our communities healthier places to live, particularly when we work together with others in our community.

Healthy People 2010 is our nation’s blueprint for improving the health of all the people living in the United States. The two guiding goals are: 1) Increase quality and years of healthy life for all people; and 2) Eliminate health disparities. A health disparity is an inequality or gap that exists between two or more groups. For instance, a health disparity may be higher rates of asthma among children from low income homes, or it might be a disparity in access to state of the art treatment following a stroke or other medical emergency.

People with disabilities experience a variety of health disparities, including the occurrence of secondary conditions that may limit normal daily activities. Secondary conditions are related to the disabling condition, but are as diverse as accessibility, depression and pressure sores. While many of these secondary conditions are preventable, many people simply don’t know what they can do to manage or prevent them.

The focus of this guide is Living Well with a Disability, a health promotion workshop that helps people manage and prevent secondary conditions so they can continue to do the things they want to do. The Living Well program is an eight-week workshop that introduces a process for setting and clarifying goals, and teaches skills for generating, implementing, and monitoring a path to reaching those goals. The Living Well program also provides tools for managing one’s health and making healthy lifestyle changes, increasing physical activity, developing and maintaining healthy relationships, avoiding depression and frustration, and improving nutrition.

The Living Well with a Disability program, developed in collaboration with researchers at The University of Montana and Kansas University, demonstrated its usefulness in a national evaluation that included nine Centers for Independent Living (CILs) in eight states. Research showed that participants in the Living Well program reported 20 to 25 percent less limitation due to those preventable health problems and a 10 percent reduction in their use of health care services. The effect of the workshop is maintained for one year or more after its conclusion.

Community Activated Living Well (COALW) is a set of guidelines designed to help plan and implement Living Well with a Disability. It includes ideas, agendas and procedures that community members can use to organize and conduct this health promotion workshop designed specifically for people with disabilities. The activities suggested in this guide may also lead community members to further address health related issues for people with disabilities in their community.

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Overview of the COALW process

People with complex health promotion needs often live in communities with few resources to address those needs. Community Activated Living Well (COALW) is a community development framework for helping people with disabilities, service providers and other stakeholders within a community, plan and implement health promotion and wellness services that can help these individuals prevent and manage secondary health conditions. The framework uses group-oriented methods to bring the consumer and service provider voices together into a service-delivery plan with maximum acceptability, utility and generality for both consumers and other members of the community. Compared to traditional symptom-based approaches to healthcare for people with disabilities and other complex healthmaintenance needs, the COALW process presents a community-based intervention that is cost-effective and links disability and health. Important outcomes include prevention of secondary conditions and reductions in limitation, as well as reduced health care costs. The COALW process blends the needs and capacities of individuals and their communities to positively impact the long-term health and wellness of community members with disabilities. The process described here is intended to develop stakeholdersin health promotion for people with disabilities in your community.

The cornerstone of this process is the formation of a steering committee that can guide implementation of the workshop within your community. The steering committee is typically formed through the actions of a staff member from a community organization (i.e., a Center for Independent Living). The actions of this staff member to form the steering committee constitute Phase I of the process. Then, in Phase II the COALW process guides the steering committee through a planning process that results in the successful implementation of a Living Well Workshop. Finally, in Phase III as the workshop is implemented, the steering committee provides problem-solving support and oversees collection of program evaluation data. As you read through these guidelines, you will find many useful ideas for developing the steering committee and conducting the workshop.

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Phase I: The Catalyst

Every effort needs a catalyst. Centers for Independent Living have long been change agents in efforts toward equality and inclusion for people with disabilities and so may be a natural catalyst for bringing together community members and organizations to initiate Community Activated Living Well. However, if your community does not have a Center for Independent Living, don’t let that stop you. Contact individuals and representatives of organizations who have a stake in the health of the community and establish a steering committee.

One advantage to forming a steering committee is that it gives you the opportunity to extend the reach of the Living Well program beyond what any single agency can achieve. You may try to form a committee of diverse members to add a variety of perspectives and resources to your committee. However, getting people to volunteer for the steering committee can be tricky. We have put together three resources to help you. First, we have included information you can use to describe the Living Well with a Disability program. Second, we have defined the scope of the steering committee in such a way that it will be able to achieve its mission in five meetings or less. Third, we have provided a list of potential contacts you might use for selecting members for the steering committee.

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Describing Living Well With a Disability

For the general population, participation in health promotion and wellness programs has been shown to improve quality of life and overall health, reduce medical care costs, and lower mortality rates. Living Well with a Disability is a health promotion and wellness workshop designed specifically for anyone with a disability or physical limitation.

Smiling woman lifts hand weight

The Living Well workshop is an eight-week course that teaches tools for helping people continue or begin to do the things they enjoy. The healthier a person is, the more they are able to do, so Living Well begins with participants developing a goal that is meaningful to them, and then making connections between healthier behaviors and reaching their goal. For example, if a person’s goal is to spend more time with their children, they may need to address fatigue in order to reach their goal. That may lead them to begin an exercise program, or to examine their eating habits. The better the person begins to feel, the more time they are able to spend with their children.

The topics in the eight, two-hour workshop sessions are:

• Goal setting   • Problem solving  • Optimistic thinking  • Avoiding a depressive lifestyle  • Healthy communication  • Information seeking  • Nutrition  • Physical activity • Advocacy   • Maintaining healthy lifestyles.

Potential health benefits include fewer health complications, increased physical activity, decreased stress levels and improvements in outlook. Participants have made a great variety of changes in daily living, including transportation solutions for community access, changes in living arrangements, new jobs, new social and recreational activities and educational pursuits.

Here are a few quotes from past participants that might be helpful.

“The best part of Living Well was classmates asking what I did over the past week to meet my goal. I feel more personal satisfaction. Setting goals gave me some motivation to hope, work, think towards a future—a positive, worthwhile, much needed experience.” 
 
“The Living Well Program has taught me to be more assertive, more self-assured, and happier in my life. It has taught me to praise others for their accomplishments as well, no matter how small.”
 
“After participating in Living Well, I now know that I can solve problems. I am not so overwhelmed when life just happens.”

 

People practice and develop skills for living well when they have important meaningful goals they are pursuing. Living Well with a Disability helps people to think about those goals and develop a plan to reach them, emphasizing healthy lifestyle behavior changes as a way of removing barriers and increasing opportunities.

This Living Well description has content that can go into brochures or flyers.

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Potential Timeline for COALW

Weeks 1 – 3
• Catalyst organization develops outreach plan and a list of potential stakeholders for Steering
 Committee formation.
• Begin contacting and recruiting for Steering Committee

Week 4
• First Steering Committee meeting
• Schedule facilitator training

Week 6
• Second Steering Committee meeting
• Recruit and confirm facilitators

Week 8
• Third Steering Committee meeting
Three people in wheelchairs sit with others at a meeting table
• Facilitator training begins

Week 9
• Facilitator training continues

Week 10
• Fourth Steering Committee meeting
 

Week 11
• Living Well workshop begins

Week 14
• Fifth Steering Committee meeting and celebration

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The mission and role of the steering committee

The mission of the steering committee is to get the Living Well program implemented and evaluated in their community. To accomplish this, we suggest a series of five meetings with specific activities for each meeting. These are listed in the table below. You can use the following table to describe and plan the activities of the steering committee.

Description of table.

Meeting

Purpose

Duration

1

Introductions/Icebreaker
Living Well overview & purpose of the steering committee ID other stakeholders
Establish initial budget & timeline
Schedule facilitator training
Develop template of topics to be checked each meeting

60 minutes

2

ID potential facilitators
Participant outreach and recruitment plan
Find accessible meeting place
Transportation plan
Order Living Well workbooks

90 minutes

3

Confirm facilitators
Schedule workshop
Confirm meeting place & transportation plan
Progress on participant recruitment

90 minutes

4

Program evaluation
Follow-up
Other community health resources
Plan refreshments

60 minutes

5

Review implementation progress and issues
Next steps?

60 minutes

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Putting together a steering committee

Professional woman smiles as she speaks on the telephone.

 Disability

  • Disability leaders—government, business, civic, political
  • Disability organizations
  • Community members with a disability
  • Center for Independent Living staff/volunteers

Service Providers

  • Vocational Rehabilitation staff
  • Medicaid Waiver case management
  • Home health providers
  • Counselors/mental health workers
  • Hospital—medical social workers, rehabilitation personnel
  • Outpatient clinics• Physical and occupational therapists
  • Developmental disability case managers or service providers
  • Family practice/internist physicians or nurses
  • Medicab/ transportation services• Durable medical equipment suppliers
  • Personal assistants• CMT/fire department personnel

Community Organizations (in addition to disability specific organizations

  • Senior Citizen Centers
  • Houses of Worship/Clergy
  • Caregiver networks
  • Librarians
  • Public Health
  • County Health department staff
  • Community Health Center staff
  • Office of Public Assistance
  • Indian Health
  • Community health workers
  • Women Infant and Children staff

Fitness or Wellness Partners

  • Fitness centers and YMCAs
  • Malls (walking programs)
  • Yoga, aerobics, dance, martial arts, etc.
  • City/County Parks Department
  • Community centers
  • Ski and recreation Areas
  • Aquatic parks
  • Private resorts
  • Industry wellness programs

Schools

  • Special education teachers/transition staff
  • Universities or colleges

Include representatives from different ethnic groups, differing socio-economic groups and genders. The steering committee will be most effective if it is representative of the population in your community. You and those you work with will come up with other good stakeholder ideas and every community offers its own unique possibilities. This list is just a starting place.

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A man and a woman crouch down, practicing measuring slopes with the Accessibility StickPhase II: Planning for the Workshop

 Once the steering committee has been recruited, they will meet approximately five times to plan and oversee the Living Well workshop. We have identified a variety of activities that the steering committee may address in each of these meetings and list them here with suggestions for accomplishing each one.

Steering Committee Meeting 1

At the first meeting, it is important to help the committee form its purpose and mission for meeting. This includes two important parts. First, the committee must quickly learn who the members are and what they “bring to the table” for the COALW process. This can be done with brief introductions that may include an icebreaker and important information about each member. For example, you might ask each person to introduce themselves, describe any work or other activities they do and share where they were born, and one of their favorite ways to spend a day.

The second part of helping the committee “find its feet” is to provide a good overview of the Living Well program itself. You may use the information from the introduction of this manual as well as your own ideas from your knowledge of the program and workbook.

Once the introductions to each other and to the program have been made, there are a few other topics you may choose to address in the first meeting. These include identifying other stakeholders, forming the project budget, and establishing an initial timeline for program activities.

Identifying other stakeholders

When you formed the steering committee, you looked for individuals who you thought would participate and could contribute to the COALW process. One of the first activities of the steering committee might be to identify other community members who might be interested in health promotion for people with disabilities. The steering committee might write a letter to them and/or might wish to contact some personally. The important outcome is that the steering committee feels everyone who should know about the program does know about the program.

Establishing an initial budget

The plans for conducting the workshop that are developed by the steering committee will depend largely on the funds available to support the program. With unlimited funds, the committee might plan a Club Med excursion over a long weekend and pay for everyone’s trip. However, given that unlimited funds are highly unlikely, the committee will need to know how much money can be spent and be aware of any guidelines for using available funding. Budget categories for the committee to consider include: training and paying facilitators, purchasing workshop manuals, meeting space rental fees, transportation and refreshments. Much of the planning the steering committee does will depend on the funds available and needs of people in the community.

Establishing an initial timeline

If time remains in the first meeting, you might try to develop an initial timeline for conducting the workshop. This might include the timing of steering committee meetings, recruiting and training of facilitators, marketing and recruiting participants and lastly a start date for the workshop itself. The timeline will help the steering committee know when activities should be accomplished and will specify the duration of their work on the steering committee.

Developing a template of topics to be checked at each meeting

The first meeting can feel a bit chaotic as people are getting to know each other and one topic will lead to questions regarding another. For example, in attempting to schedule facilitator training it may become clear that setting a time is difficult without having identified and recruited the facilitators. Developing a template and an initial timeline relieves the pressure of feeling like everything must get done in the first meeting. In addition, checking the list of topics at each meeting ensures that those topics will be completed. As in any organizing effort, asking for specific commitments from individual steering committee members also improves follow through.

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Steering Committee Meeting 2

Facilitator recruitment

Much of the success of the Living Well program is related to the qualities and abilities of the workshop facilitators. We recommend two facilitators, with at least one of the facilitators being a person with a disability or chronic health condition. We have listed some of the facilitator qualities below that you might consider when choosing people for the program.

Two women in wheelchair discuss using the Accessibility Stick

• Enthusiastic and passionate about health and disabilityCommunicates effectively and non-judgmentally

• Organized—able to coordinate materials, schedules,
special needs, etc.

• Personable and flexible

There are many ideas for recruiting facilitators. Centers for
Independent Living often have peer advocates or peer
mentors—people with disabilities who provide peer support
to people with disabilities. Peer advocates can be strong
facilitators, bringing with them their own life experiences
and expertise. Facilitator training can be mutually beneficial
for the peer advocate, providing training and potential
income. A second model is to recruit people who are currentlyinvolved with Vocational Rehabilitation Services. Again, this model provides job experience and resume building for the new facilitator, and benefits the program by providing leadership from a person with a disability.

Outreach for recruiting participants

As plans for implementing the workshop begin to take shape, the committee can begin to consider how they will recruit individuals to participate in the workshop. It is useful to think about two avenues or pathways to outreach. We call the first passive outreach. Passive outreach includes all advertising including print, radio, and television. It is passive because the outreach recipient is simply exposed to your message and then he or she must respond to it. This approach is good for reaching many people and getting the word out. For example, it is relatively inexpensive to mail letters or post flyers.

The problem with passive marketing is that it may not be enough to motivate many people who would both enjoy and benefit from attending the workshop. Passive outreach fails when people don’t understand the message, they don’t believe it would be useful for them or simply are not ready to respond to a mailing or flyers. Passive outreach typically is effective in recruiting 2% to 8% of the total number of people reached. That means, for every 200 letters mailed, four to 16 people respond.

To review, passive outreach requires people to understand the message and then respond to it. If they either misunderstand the message or misjudge the likelihood they will enjoy and benefit from the offering, it is unlikely they will participate. Hence, passive outreach is effective for only a small proportion of the people Living Well could serve.

The second avenue to outreach is called active outreach. Like passive outreach, active outreach puts the message out, however the message is followed by a telephone call, email or personal contact.

Active outreach is good for reaching those who are not ready to respond to a passive message, but with personal contact, may choose to participate. Of course, active outreach is not so good for reaching large numbers of people because it takes time to talk with people. However, engaging a small number of people rather than lightly touching a large number may be more effective in recruiting for Living Well. Using active outreach methods, between 22% and 47% of those contacted respond (i.e. talking with 20 people generates 4 to 10 responses).

In reality, having skills for both passive and active outreach is important to the success of many human services. Even more, passive and active outreach methods work well together. First you mail out information and then you follow-up with personal contacts.

The steering committee may begin with recruiting case managers or other folks who already have a relationship with potential participants so that they can encourage participation in Living Well to people with whom they have working or personal relationships.

Accessible meeting place

A critical feature of organizing Living Well programs is locating an accessible meeting space for the sessions. Accessible generally means that people with any type of disability can get to, in, around, and out of a building. It also means that it is easy to get into, out of, and around the room you will be using for the session. Remember, the restrooms need to be accessible too!

Some buildings are more likely to be accessible than others. Under the Americans with Disabilities Act (ADA) all public and government buildings are required by law to be accessible. These might include the post office, social service offices, hospitals, public libraries, and other such facilities. Newer buildings are generally more accessible than older ones and many hotels comply with the ADA and have accessible meeting spaces. In general, you should look to see if there are: 1) designated handicapped parking places, 2) curbs or other obstacles from a parking area to the building allowing wheelchair users easy access, 3) stairs into the building or to the meeting room (there should be a ramp or elevator), and 4) entry ways wide enough for a large wheelchair. Inside the building: 1) carpet should not be so thick that it presents undue resistance to a wheelchair user, 2) hallways should be wide enough to allow a wheelchair to turn completely about, 3) the meeting room should be large enough to allow those who use wheelchairs or walkers to move about easily, and similarly, 4) the bathrooms should be large enough to allow a wheelchair to enter (wide door with open swing), large enough to allow the door to close, offer grab bars for transferring, and a toilet seat that is between 17 to 19 inches from the floor.

A word of caution, it is very easy to overlook obstacles or barriers. You may want to have a friend or colleague who uses a wheelchair or other mobility device check out the facility. Another alternative is to seek advice and recommendation from an independent living center or other disability service provider. For more detailed information about accessibility standards, you can contact your state’s Vocational Rehabilitation office or an Independent Living Center and ask for the most current issue of the American with Disabilities Act Accessibility Guidelines (ADAAG).

There are many possibilities for accessible meeting space, such as hotels, hospitals or businesses. One community found a free accessible meeting space in their Senior Center where accessible transportation was readily available, as well as affordable meals and snacks.

Dwarfed by powerlines, a small building sits on the flat, brown prairie.  A red pick-up truck and a silver sedan are parked outside.

Transportation

There will be few problems if the location for the workshop is serviced by local accessible transportation systems, however, public transportation or transportation that is accessible may not be available in rural areas. Therefore, it may be necessary to coordinate or provide transportation to help consumers attend.

When arranging transportation, the various needs of people with disabilities must be considered. There are three general approaches to arranging transportation:

  • rely on consumers to make their own transportation arrangements
  • offer to arrange or provide transportation for consumers who have no clear transportation options
  • provide transportation for all participants to the workshop

It is important to get workshop notices to consumers and participants in a timely manner. This gives participants adequate time to arrange their own transportation through traditional transportation systems or other transportation options, such as family, friends, ride share or Personal Assistive Services.

If participants are unable to find transportation to the workshops, the facilitator or a steering committee member may need to help them make necessary transportation arrangements. It is important to keep in mind that standardized transportation providers need adequate notice, sometimes as much as two weeks to schedule transportation for your workshop. Community organizations might also provide accessible transportation, including Independent Living Centers, medical clinics, senior citizen centers, hotels, and faith-based organizations.

Once the date, location, and specific consumer needs have been established, potential transportation providers can be contacted to confirm availability of transportation. Finally, transportation costs need to be included as a budget item if individuals are unable to afford the cost.

Ordering workbooks

Workbooks are available in standard print, large print, Braille and on computer disk in ASCII text, which is easily accessed by screen readers. All formats are $22.00 which includes shipping and handling. Orders may be placed by calling the Research and Training Center, Rural Institute, (406) 243-2460. Please specify how many workbooks per format and a mailing address. Please allow two to three weeks for delivery.

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Steering Committee Meeting 3

Blair Williams addresses a meeting.

Facilitator training

The Research and Training Center at the Rural Institute offers web-based or on-site training.

• Web-based training: Facilitators-in-training
are connected to the trainer and other trainees by
way of a web-based connection and a telephone
conferencing connection. This training is conducted
during four, two-hour sessions. Cost per participant
is $250 for groups with four to six trainees, and $200
for groups with seven to 10 trainees. Additionally,
participants will be responsible for long distance charges.

• On-site training: A trainer will travel to your location and teach 14 hours of materials over two days. This training can be conducted for up to 20 facilitators. The fee for on-site training is $2,500.00 plus the cost of travel and lodging.

Training may be scheduled by calling the Research and Training Center, Rural Institute, (406)243-2460.

Workshop scheduling

When scheduling a Living Well workshop, it is important to consider public transportation schedules and what time of day might be best for the majority of potential participants. Some people with disabilities may find it easier to attend an afternoon workshop. Others may need to attend after work hours, necessitating an evening offering. This means that identifying who will be recruited may affect the time that the workshop will be offered.

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Steering Committee Meeting 4

Dad in wheelchair cuddles his six-year-old son.Program Evaluation  

Program evaluation is a vital component of any program. Evaluation helps determine program effectiveness in terms of stated outcomes and provides a framework for future support of the project. If you are interested in joining a national consortium of Living Well programs currently being evaluated, contact Tony Cahill, PhD, University of New Mexico Center for Development and Disability, telephone (505)272-2990.

Other health resources in the community

A further role that Living Well may play is connecting people with disabilities with other health resources in the community. For example, tours of local fitness facilities might be arranged. Health care providers, dieticians, counselors, or yoga instructors might be invited in to help lead a particular session, or brochures might be handed out at workshops informing participants of available health resources within their community.

Planning refreshments

Refreshments are an important part of workshop meetings. They provide an opportunity for participants to stretch and change their physical positions and to network informally with others in the workshop. If planning refreshments, the workshop facilitator or steering committee member must keep in mind the varied needs and special requirements of people with disabilities. If any participants have special dietary needs (e.g., people with diabetes), the workshop facilitator would want to consider this when ordering food, to allow alternative choices.

Certificates

Participants that go through Living Well work hard and are often proud of their achievements. A certificate of participation or a similar acknowledgement is a nice reward for all of their efforts and contributions to the group.

Follow-up

Many Living Well workshop participants may want to continue meeting after the workshop is over. Some participants continue to support one another by meeting together periodically to discuss goal progress or other activities, while others evolve into advocacy groups or more formal mutual aid organizations. Participation in Living Well also provides facilitators the opportunity to connect consumers with helpful supports or available programs.

The steering committee may also wish to continue meeting, perhaps undertaking additional tasks, such as meeting with local fitness facilities to encourage accessible equipment and class offerings.

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Phase III: Implementing the Workshop

Steering Committee Meeting 5

Woman uses Nu-Step cross-training machine at New Directions center

Review implementation progress and issues

This meeting may be used to confirm that all is in place and ready
to roll, or may be held after the first session or two have been
conducted to make sure that all is going according to plan. It is
also a good time to critically reflect on process, progress, and
other issues. At this point, the steering committee may decide
to continue by beginning to plan a second Living Well
implementation or health promotion activity.

Celebrate

 Finally, and of great importance, CELEBRATE all of your hard work! Perhaps your celebration can include a small token of appreciation for each steering committee member or someone could host a potluck or dessert. Your community has joined the hundreds of others around the nation who are working to include all community members in health and wellness activities.

Congratulations and keep up the good work.

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Authors

Craig Ravesloot, PhD craig.ravesloot@umontana.edu

Barbara Cowan

Against a snowy landscape, a man wearing a ski cap and winter jacket raises his arms in a gesture of celebration.

For more information, contact:
Montana Disability and Health Program
The University of Montana Rural Institute
52 Corbin Hall, Missoula, MT 59812-7056
888-268-2743 toll-free;
406-243-5467 Voice;
406-243-4200 TTY
406-243-2349 (fax)
http://rtc.ruralinstitute.umt.edu
http://mtdh.ruralinstitute.umt.edu

 

Opinions expressed are those of the authors, and not necessarily those of the funding agencies.
This report is available in Braille, large print and text formats on request.

 

Copyright © 2005