READINGS
in Independent Living

Connects People with Disabilities and Alternative Health Care Practitioners

1999
by Tracy Williams

People with Disabilities Gain Access to Alternative Therapies

Like everyone, people with disabilities want to feel good and maintain active lifestyles. Alternative therapies offer a wealth of possibilities for people looking to nurture their physical, mental, emotional, and spiritual health. However, many barriers keep consumers from taking advantage of these natural health care modalities. Some common barriers are concern about extra expenses and lack of access, plus an unlimited number of choices compounded by a lack of well-documented research. Perhaps the greatest barrier is the fear that alternative practitioners will not respect the high standards of consumer control established by independent living centers.

A Unique Partnership Between DIRECT and Touch/Ability

DIRECT Center for Independence, Inc., in Tucson, Arizona, has entered into a unique partnership to increase the availability and improve the quality of health care and life management options for people interested in living independently. Touch/Ability, a nonprofit organization that bridges the gap between people with disabilities and alternative therapy practitioners, has facilitated this cooperative arrangement.

In March 1997, Touch/Ability conducted the first of what have become regular evening Wellness Clinics held three times each month. Since the beginning of the program, more than 40 massage therapists and bodyworkers have received disability-awareness training. In 1998, more than 50 consumers, some new to the independent living movement, received approximately 200 massage, bodywork and other natural therapeutic sessions at DIRECT's Wellness Clinic.

How the Partnership Evolved

Touch/Ability was developed by Tracy Williams, a former independent living trainer and natural healing enthusiast. A disabled person herself, Williams understands both the barriers and potentials for bringing together consumers and alternative health care practitioners. Williams' long term interest in and involvement with natural healing led her to become an instructor and student resource counselor at the Desert Institute of the Healing Arts, an accredited massage therapy school in Tucson. Williams developed a course to teach massage therapy students how to work with people with disabilities. In 1996, she proposed to DIRECT the idea of a Wellness Clinic.

Touch/Ability's board of directors consists of people with disabilities who endorse the independent living philosophy. Since Touch/Ability's mission of educating people with disabilities about alternative health care options was compatible with DIRECT's mission as a center for independent living, the board of directors and the executive director allowed this unique service agreement to become included as part of the center. Board members from both organizations have provided guidance and direction in service delivery and the establishment of policies for the program.

Touch/Ability is part of DIRECT's annual work plan under Advocacy/Community Collaboration and Resource Development. DIRECT gives support to the Touch/Ability Program by providing space, support services, and advocacy to promote consumer control over health and quality of life issues. The center for independent living has proven to be an ideal location for the implementation of a consumer-directed wellness program.

DIRECT and Touch/Ability use an internal referral system to exchange information and resources, thus providing consumers with an opportunity to access all available independent living services, such as home modification, peer counseling, and travel training. A bulletin board in the hallway is dedicated to health, healing, fitness, and other relevant information. Williams attends staff meetings, staff retreats, and community events. DIRECT's newsletter, reaching more than 600 organizations and households, regularly features information about alternative health care. A full waiting list indicates this population demands affordable and available services by competent massage therapists, bodyworkers, and other healing arts practitioners. Touch/Ability maintains an autonomous budget. Alternative health care practitioners are volunteer professionals and professionals who participate as part of the training program for which they receive continuing education credit. Most participants make small donations after clinic ($10-25). No one is refused services due to lack of funds. Other generous individuals have contributed significant resources. Handcrafted jewelry bearing the original Touch/Ability logo is available for purchase. DIRECT and Touch/Ability have collaborated in applying for several grants; raising funds is critical for the continued expansion of services.

A Community-Based Wellness Clinic

On Wednesday nights, the center's conference room is transformed into a healing sanctuary. Wellness Clinics have served men and women of all ages and diverse cultural backgrounds. Participants have had all types of disabilities, including arthritis, cerebral palsy, fibromyalgia, multiple sclerosis, muscular dystrophy, post-polio syndrome, scoliosis, spina bifida, and spinal cord injuries. Participants feel that alternative therapies are benefitting their well-being, and they are personally committed to the success of the program.

Consumer Control is the Foundation of Touch/Ability

The Wellness Clinic requires all participants to be responsible for giving detailed instructions and feedback to the practitioners in order to teach them the best way to work with that participant's particular needs. By expressing their self-identified health issues to massage therapists and bodyworkers, consumers develop confidence to go into the community and cultivate similar supportive relationships. This type of experience empowers consumers to accomplish the independent living goals of self-help and self-advocacy.

Throughout an extensive screening process, each participant defines his or her specific goals and decides what therapeutic technique to sample or which practitioner to work with for the evening. During the intake interview, each person assesses his or her condition and needs, outlines long and short-term goals, and discusses the nature of receiving bodywork. The process includes the following steps:

Completing a No-Barriers Intake Interview
Agreeing to the conditions outlined in the Commitment Contract
Signing the Informed Consent Form
If necessary, obtaining a Medical Release from their physician

Participants use accessible restrooms for changing clothes and preparing themselves to get onto the massage table or futon. Three men on one side of a divider screen and three women on the other side discreetly receive one to two hour sessions. Privacy is appropriately respected. Both participants and practitioners pitch in to supply linens, massage oils, and other accessories. Airflow quality, temperature, and noise levels are monitored. Tone and volume of mood music and soft lighting contribute to creating a relaxing ambiance.

Practitioners set up their massage tables and futons side by side, leaving enough space for someone using a motorized wheelchair to move around. Designated partners begin by discussing the best focus for the session and the desired outcomes. Practitioners incorporate personal assistance services as part of the overall individualized session. Throughout the evening a clinic coordinator circulates among those in attendance to make sure everyone has a safe and satisfying experience. After clinic, the participants usually gather in the lobby to exchange ideas and process their feelings. To monitor the program's integrity and give valuable feedback to the practitioners, participants are asked to evaluate their sessions and the program in general.

Starting A Wellness Clinic

Centers interested in starting a similar program can begin by learning about alternative therapies and the resources available in the local community. The resources listed at the end of this article provide useful current information about integrative medicine, touch research, business practices, and how to locate practitioners.

It is also important to check state and local codes for information about massage therapy and other health care provider regulations. DIRECT, Touch/Ability, and a significant number of consumers worked together to amend a City of Tucson ordinance to allow massage therapists to volunteer without acquiring a regulatory business license. As a result of educating government officials, DIRECT was issued the city's first nonprofit massage establishment license.

There are hundreds of massage therapy and bodywork schools throughout the country. Approach the nearest massage school and find out if anyone teaches a hands-on class related to people with disabilities. Such a person would be a natural liaison for establishing the type of partnership that DIRECT has with Touch/Ability. If there is no local massage school, a program is still possible. Contact local practitioners with an interest in working with special populations. Touch/Ability is willing to provide consultation services and training to make alternative therapeutic services available to everyone.

Continuing Education Opportunities for Practitioners

Many alternative health care practitioners are people with genuine gifts for helping others. However, in the normal course of their education, few alternative health care practitioners have opportunities to practice with people with disabilities. Touch/Ability provides practitioners with guidance and training to help them make their services completely accessible to all people. These workshops challenge practitioners to face their misconceptions and fears, raise their standards of competency, and open themselves to the satisfying experience of applying their hands-on techniques for people with disabilities. Through direct experience with consumers, practitioners learn sensitive communication skills in interviewing and soliciting feedback. Practitioners also learn basic personal assistant services, such as safe mobility techniques to assist people to and from their wheelchairs and how to position someone for a treatment.

Most practitioners must continue their education to maintain an active status as a professional health care provider. The National Certification Board for Therapeutic Massage and Bodywork has approved Williams to provide continuing education credits to qualified practitioners. Therefore the Wellness Clinics benefit the practitioners as well as the participants.

Conclusion

Independent living involves being in touch with the inner self and inherent resources for personal growth. From the traditional medical perspective, alternative therapies remain on the fringe of acceptance. However, national trends indicate that more and more people are seeking natural ways to take care of themselves. It's time to pay attention to these choices, so people with disabilities will feel better prepared to consciously move forward into the next millennium.

Reference:

Eisenberg, David M. "Unconventional Medicine in the United States: Prevalence, Costs, and Patterns of Use." New England Journal of Medicine 328.4 (1993): 246-252. <http://www.nejm.org/content/1993/0328/0004/0246.asp>

Resources:

DIRECT Center for Independence, Inc.
1023 N. Tyndall Avenue
Tucson, Arizona 85719
Tel: 520-624-6452 or 800-342-1853
Fax: 520-792-1438
Email: direct@azstarnet.com
www.direct@azstarnet.com/~direct

Touch/Ability
Tracy Williams, M.S., Director
3161 W. Mojean Street
Tucson, Arizona 85745
Tel: 520-743-7566
Email: dh25734@goodnet.com
www.touch-ability.org

American Massage Therapy Association (AMTA)
820 Davis Street, Suite 100
Evanston, Illinois 60201-4444
Tel: 846-864-0123
www.amtamassage.org

American Oriental Bodywork Therapy Association (AOBTA)
Laurel Oak Corp., Ctr. Ste. 408
1010 Haddonfield-Berlin Road
Voorhees, New Jersey 08043
Tel: 609-782-1616
Email: AOBTA@prodigy.net
www.healthy.net/aobta

Associated Bodywork and Massage Professionals (ABMP)
28677 Buffalo Park Road
Evergreen, Colorado 80439-7347
Tel: 800-458-2267
Fax: 303-674-0859
Email: expectmore@abmp.com
www.abmp.com

International Massage Association (IMA)
3000 Connecticut Avenue NW, Suite 308
Washington, DC 20008
Tel: 800-933-7113 or 202-387-6555
Email: massage@rocky.his.com
www.imagroup.com

Massage Magazine
1315 W. Mallon Avenue
Spokane, Washington 99201-2038
Toll free: 800-533-4263
Customer service: 800-872-1282
Fax: 509-324-8606
www.massagemag.com

National Certification Board for Therapeutic Massage and Bodywork (NCBTMB)
8201 Greensboro Drive #300
McLean, Virginia 22102
Tel: 800-296-0664 or 703-610-9015
Fax: 703-610-9005
Email: mswiscoski@ncbtmb.com
www.ncbtmb.com

Program in Integrative Medicine |
Andrew Weil, M.D., Director
University of Arizona, College of Medicine
P.O. Box 245153
Tucson, Arizona 85724-5153
Tel: 520-626-6484
www.ahsc.arizona.edu/integrative_medicine
www.drweilselfhealing.com/
Ask Dr. Weil Web Site: www.drweil.com

Sohnen-Moe Associates, Inc.
3906 W. Ina Road, Suite 200-367
Tucson, Arizona 85741-2295
Tel: 800-786-4774 or 520-743-3936
Email: sma@rtd.com
www.sohnen-moe.com

Touch Research Institute
Tiffany M. Field, Ph.D., Director
University of Miami, School of Medicine
Dept of Pediatrics
P.O. Box 016820
Miami, Florida
Tel: 305-243-6781
Email: touchability@qwest.net
www.miami.edu/touch-research

This document may be reproduced for noncommercial use without prior permission if the author and ILRU are cited.

The mission of the IL NET is to provide training and technical assistance on a variety of issues central to independent living today--understanding the Rehab Act, what the statewide independent living council is and how it can operate most effectively, management issues for centers for independent living, systems advocacy, computer networking, and others. Training activities are conducted conference-style, via long-distance communication, webcasts, through widely disseminated print and audio materials, and through the promotion of a strong national network of centers and individuals in the independent living field.

ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, free-standing medical rehabilitation facility for persons with physical and cognitive disabilities. TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities.

Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. The content is the responsibility of ILRU and no official endorsement of the Department of Education should be inferred.

READINGS in Independent Living