Helping People with Disabilities Take Charge of Their Health Care


This project encourages people with disabilities to take greater responsibility for their own health, wellness and health services. Savvy health care consumerism means knowing how to work effectively with the health care system and how to successfully advocate for individual needs as well as the needs of family members and significant others.

Training Goals and Objectives

The theme of self-empowerment is expressed in having people take change of their health care. Based on this premise, the training goals include supporting and strengthening people with disabilities, their belief and confidence in their ability to achieve health, and more importantly understanding that health and a disability or a chronic condition can coexist.

Support and strengthen people with disabilities belief and confidence in their ability to:

Achieve health and understand that health, disability and /or chronic conditions can coexist. Health encompasses the ability to function effectively in given environments, to fulfill needs and to adapt to major stresses.

Take greater control and responsibility for their health, wellness and health services.

Increase success in navigating the health care system.

Get trustworthy information and get their questions answered.

Be vocal and active participants in their health care as partners, information providers, problem solvers, decision makers, and advocates.

Avoid unnecessary pain, discomfort, missing work and / or other important life activities.

Use and benefit from peer support

Provide bit size pieces of information and handouts that service providers and health care providers can easily integrate into "trainable moments" (short or long term contacts with people with disabilities with whom they are working).

Provide training materials for staff or independent living centers and other disability-related organizations for use in "Taking Charge of Your Health Care" workshops.

The project aims to inform people how to find and use accurate, trust worthy information in order to get questions answered in order to avoid unnecessary pain, discomfort, missing work, and missing other important life activities. Ultimately reaching these goals allows people to increase their understanding of their health care needs, and their responsibility to communicate those needs and take greater control of their wellness and health services.


This community based project uses a series of educational modules, incorporated into one full day workshops, co-lead by two facilitators with disabilities, designed for use at California's Independent Living Centers (ILCs), and other disability-related consumer controlled organizations to help people with disabilities to improve the effectiveness of their interactions with health care providers. The modules include detailed information for the trainers as well as practical "stand alone– just in time" tools such as tip sheets, sample scripts for communicating with health care providers, and a personal medical history and questions templates.

Workshops include presentations, group exercises, role-plays, videotapes, open discussion, paper and pencil inventories, a notebook of easy to use handouts and several chapters from Be a Savvy Health Care Consumer, Your Life May Depend on It! (2001) by June Isaacson Kailes.

The materials and messages are consumer-tailored and customized, not expert-driven, but developed by and for people with disabilities to incorporate values, relevance, meaningfulness, interactivity, convenience, completeness, control, and readability. The materials were reviewed by a diverse group of health providers for accuracy. They incorporate frequently ignored accessibility issues and use common examples of barriers people with disabilities encounter at health care facilities.

There is a specific emphasis on effectively conveying communication strategies for people to use with health care providers including:

Maximizing time during visits.

Identifying, asking for and describing needed accommodations.

Learning how to educate providers about a disability(s).

Discussing the influence of disability(s) and/or chronic conditions.

Utilizing tools to help obtain, understand, maintain and communicate a medical history.

Choosing appropriate advocacy strategies.

Understanding the importance of timing of preventative screenings, which may or may not need to be adjusted when taking into account specific individual disability issues.

Sample Modules Include:

Active versus Passive Health Care Behavior

How to distinguish the qualities of active versus a passive health care behaviors

Why active consumers have more positive results

Strategies For Effectively Maximizing Your Limited Time With Providers, How To:

Prioritize your questions

What to do when there is not time to get your questions answered

Effectively provide information

Effectively work with a support person

Get and remember information

Use sample questions from checklists on: procedures, tests, consultations and medications

Ask open-ended questions

Know when you may need, the importance of, and how to get second and third opinions

And when to see and effective ways to locate and work with a specialists

How to Choose and What to Look For In Health Care Providers

Techniques to use

Questions to ask regarding how to evaluate qualifications, physical, communication, and financial access; qualities and attitudes

Dangerous provider warning signs

Health Information – Distinguishing Value from Junk

Why it is important to be and stay informed about your health condition(s)

How to find and evaluate the quality of health information

Obtaining, Understanding, Maintaining and Sharing Medical Records and Health Information

Why is it Important to Obtain, Maintain and Read Your Medical Records