Impact Feature Issue on Supporting Wellness for Adults with Intellectual and Developmental Disabilities
Advocating for Quality, Inclusive Wellness Opportunities in Our Communities
Participation in programs that promote health and wellness, such as those that promote physical activity, nutrition, tobacco cessation, or mindfulness, is an important opportunity for individuals with intellectual and developmental disabilities. Maintaining good health, strength, and function over time can help a person maximize independence and self-determination. Just as important, these activities are enjoyable for many people. And, participation in inclusive community activities of this type builds friendships and community networks, improving well-being.
There are many options for engaging in wellness activities in communities, and disability should not exclude a person from participation. However, in reality there are too few wellness opportunities that are of high quality and truly inclusive. This article aims to help readers advocate for inclusive wellness opportunities in their communities by providing a list of key characteristics of quality, inclusive programs, as well as a set of tips for individuals with disabilities and their families seeking to advocate for and create inclusive wellness opportunities.
Characteristics of Quality Wellness Programs
How do you know if a program is a quality wellness program for people with intellectual and developmental disabilities? Several sets of guidelines for inclusive community wellness programs have been created. The following list draws upon those published by The Expert Panel on Disability and Health Promotion Interventions (Drum et al., 2009) and the Center on Disability at the Public Health Institute (Kraus & Jans, 2014):
- Programs should be accessible. Accessibility of the physical space and any equipment is important. Programs that include equipment should include universal design features so that all individuals, including those using wheelchairs, can utilize the equipment. In addition, programs should be socially and programatically accessible, and accessible in communication for people with intellectual disabilities and limitations in hearing or vision. Wellness program staff should be welcoming, respectful, and inclusive, and programs should allow for accommodations.
- Programs should be flexible to fit the needs of the individual. Under the Americans with Disabilities Act, you have the right to reasonable accommodations to meet essential eligibility requirements for participation. Program accommodations should be tailored to specific needs of the individual. Quality programs will welcome input and be proactive in response.
- Programs should provide and/or allow for supports that are appropriate to the individual participant. Support is a vital part of maintaining healthy behaviors, which is not unique to people with disabilities! Quality programs will allow for and welcome supports needed for an individual to participate fully. Participate in a program with a family member or friend, bring support staff, or look for programs that offer personal trainers, health coaches, mentors, or other individuals who could support participation and help individuals overcome barriers.
- Programs should be inclusive and welcoming to all participants. All programs should seek to be inclusive, rather than creating separate or segregated programs specifically for people with disabilities. Programs should be welcoming of all people, and program staff should receive training to increase knowledge and skills related to supporting participation of individuals with disabilities.
- Programs should allow for choice by the individual participating. Participating in wellness should enhance and support self-determination. It is important that an individual choose to participate in activities that are enjoyable! Support and encouragement – not prescription – help individuals make healthy choices.
- Programs should be affordable to people with disabilities and their families or caregivers. To increase affordability, advocate for the program or facility to let support staff enter without a fee. Inquire about scholarships or reduced fees at your Y, public recreation facility or other program in which you participate.
- Programs should expressly commit to including people with disabilities as a cornerstone of their organizational mission. Ideal programs clearly state inclusion of all people, including people with disabilities, in their program mission or objectives. They involve people with diverse abilities and disabilities in their planning, seek out people with disabilities through their marketing, and engage in outreach and communication that includes people with disabilities.
There are wellness programs that seek inclusion by design, especially related to sports and recreation. You may be interested in looking for organizations such as these in your community. They include Special Olympics Unified Sports and inclusive outdoor recreation programs. A growing number of organizations seek to be inclusive of people of all abilities in their “fun run” fundraising events by putting on accessible run, walk, and roll events. Some company human resources groups are also seeking greater accessibility with wellness activities, such as lunchtime run, walk, and roll clubs. These activities still may not be fully accessible for all people with intellectual and developmental disability, so even if you find welcoming and inclusive wellness opportunities, communication and advocacy regarding your needs is always important.
Advocating for More Inclusive Programs
In reality, participating in wellness activities in the community can be quite difficult. Most individuals have probably encountered multiple barriers, including accessibility problems, wellness professionals who lack training or have misinformed attitudes about people with disabilities, emphasis on segregated activities for people with disabilities, high costs, transportation issues, and lack of adequate supports. There are multiple sources of these barriers. Some of these barriers come from the programs themselves. Quality, inclusive wellness activities that welcome people with intellectual and developmental disabilities are difficult to find in many communities. Wellness and recreation providers may have a number of fears; they may be concerned about liability, worried about individuals with disabilities participating and having bad experiences, or reticent to open the door to accommodations they fear will be expensive or beyond their expertise.
Coming up against barriers to wellness participation in the community can be frustrating, but know that you can advocate for inclusion. Here are some tips to get you started:
- Know the law. The Americans with Disabilities Act guarantees you the right to participate, the right to participate in the most integrated setting, the right to reasonable accommodations, the right to use adaptive equipment, and the right to not be discriminated against due to safety concerns without an assessment.
- Advocate for change. Assert yourself, ask for what you want, and follow up to make sure change happens.
- Be positive. Although sometimes it is true that wellness program staff want to limit participation by people with disabilities because they are fearful or have negative attitudes about people with disabilities, in many cases they may just lack experience or information. Be willing to provide that experience and information! Even if a program is not initially ideal, being there and participating can be a first step in changing attitudes and opening the door for further participation and accommodation.
- Be prepared with resources. There are a number of resources on wellness participation for people with disabilities, including the American Association on Health and Disability (http://www.aahd.us/resource-center ) and the National Center on Health, Physical Activity and Disability (NCHPAD) (http://www.nchpad.org ).
Advocating for Increased Supports
People with disabilities also frequently encounter difficulty using existing programs and activities because of barriers from support services. These barriers are generally unintended, but can still hinder participation in wellness, especially inclusive wellness programs in the community. Service or support providers may be limited by resources, including staffing resources. Limited resources may limit transportation or individualized supports provided to clients with disabilities who want to participate in wellness in the community when other individuals want to stay home or do non-wellness activities. Service providers may feel limited by rules governing benefit programs and the types of supports that are eligible for reimbursement.
Therefore, individuals with disabilities and their families may also find themselves advocating for supports from service providers to access inclusive wellness programs in the community. These are some tips for increasing supports:
- Keep wellness in mind when seeking out supports. Choose service providers who are enthused about wellness and interested in providing supports related to wellness.
- Incorporate wellness in planning. If wellness is important to you, make sure to include this in goals set during person-centered planning and individual support plan meetings. Advocate for inclusive wellness as an important aspect of participation in the community.
- Ask service provider organizations to make changes. There may be small, doable policy changes that organizations can put in place to support wellness. For example, ask whether performance of support staff is evaluated in part on whether they support health and wellness goals of individuals for which they provide services. If not, ask whether they would make that change.
Creative Options for Wellness Participation
Be creative! While seeking out quality, inclusive programs and positive supports for participation, also remember that wellness should not be found only as part of a “program.” Inclusive wellness opportunities can emerge from other aspects of life, and maintaining health is easier when it is integrated into your lifestyle. I have a sister who has a developmental disability, and wellness has always been an important part of her life. Despite a number of different employment positions throughout her adult years, she has maintained part-time work or volunteer opportunities at her local YMCA. These jobs have been an important way for her to work in the community, but they have also provided wellness opportunities. She can go to work early or stay late and walk on the track or take in a Zumba class. As an employee, using the facilities is free. She has developed friendships with other employees and “regulars” at the Y, so even if she chooses to walk on the track alone, she sees people she knows, making workouts social opportunities.
Identify quality, advocate for inclusion, plan for supports, and work to incorporate wellness into your lifestyle. Have fun and be well!
Drum, C. E., Peterson, J. J., Culley, C., Krahn, G. L., Heller, T., Kimpton, T., … White, G. W. (2009). Guidelines and criteria for the implementation of community-based health promotion programs for individuals with disabilities. American Journal of Health Promotion, 24(2), 93–101.
Kraus, L. E., & Jans, L. (2014). Implementation manual for guidelines for disability inclusion in physical activity, nutrition, and obesity programs and policies (Oakland CA: Center on Disability at the Public Health Institute.).