Stroke Survivor's Bill of Rights

Stroke is both a chronic disease and a life-altering event. All too often it is believed to be a disease of only the elderly. However, stroke is indiscriminate. It strikes people of all backgrounds, both sexes and any age.

Thanks to the improved treatments of modern medicine, stroke survivors are returning to their communities. You find them back at work in offices, hospitals and factories. You recognize stroke survivors at the beach, biking the streets, walking the paths, and enjoying the theater. Just like most Americans, stroke survivors are searching for a life that has meaning and purpose. The public at large sometimes fails to recognize this and hesitates to fully accept stroke survivors as functioning positive contributors to society.

We, as stroke survivors, present this Bill of Rights to call the public's attention to survivors' needs, to enhance our health care, and to bring greater satisfaction to stroke survivors as well as our families, friends, health care professionals and legislators.

1. Survivors have the right to expect lifelong health care as needed. The physicians and other health care professionals involved in their care should recognize the need to be:

patient, take time to listen to concerns, and be respectful
knowledgeable about "state of the art" research for management of stroke
open to providing us with as much information as we wish.
aware of appropriate resources and willing to refer us and our families to
these services

2. Survivors, like other Americans, have the right to the pursuit of happiness, which includes:

being free of labels such as "victim," "incapable," "crippled," "dumb" etc. being free of blame or guilt at having caused our disease
being afforded the identity and dignity of first and foremost being a contributor to society
knowing as much information about stroke recovery as desired being allowed to decide when to express our feelings with family and friends establishing a partnership with our physician and others on our care team

3. In the workplace survivors have the right to equal job opportunities which means the right to:

needed time after our stroke to discover what we can and cannot do in our former job
aspire to jobs worthy of our skills and talents
reasonable accommodations and training necessary to perform our job
privacy of our medical records

4. Survivors have major problems with health care coverage and every effort should be made to assure survivors have access to health care, long term care, and life insurance policies. This means:

for employees, we have the right to be included in group health coverage regardless of disability or health history
for physicians and other professionals to advocate for us when insurance coverage
for treatments are denied and to be knowledgeable about options for care
for social policy makers, both in the government and private sectors, to seek ways
to improve Medicare and other insurance coverage to include new rehabilitation treatments, prescription drugs and strategies for preventing recurrent strokes
for organizations, like the American Stroke Association and the National Stroke
Association, to continue working on our behalf as a unified voice that can be hear across America.