CA Collaborative Advocacy Toolkit Assists People with Disabilities

What are the historical context and purpose of the Californians for Olmstead Project?

Californians for Olmstead is a public policy and educational project of the California Foundation for Independent Living Centers (CFILC). The purpose is to advance changes that will remove the bias toward institutionalization of people with disabilities and promote the implementation of the 1999 U.S. Supreme Court Olmstead decision, which ruled that under the Americans with Disabilities Act, people with disabilities have the right to live in the community and not to be institutionalized.

What prompted development of the Olmstead Advocacy Toolkit?

Advocates wanted more information about how the Olmstead issue is relevant in their local communities, as well as tools and strategies that they could use to help educate local policymakers and promote local policies that support people with disabilities not just to survive, but to thrive in communities where they live. We created the Toolkit to assist them in that effort.

How might a person with a disability or their advocate utilize the Toolkit?

In many ways! First of all, the Toolkit includes an advocacy guide with ideas that advocates may want to consider working on, as well as step-by-step instructions about how to get started. It has a wonderful essay about disability history by Dr. Paul Longmore that will help people understand and talk to others about the importance of disability rights and policies. There is a poster, a fact sheet and a brochure that can be downloaded and printed out to give out as educational information, and a media manual that will help people to speak to the press and create a communications plan. Finally, there is a PowerPoint presentation about Olmstead that people can personalize with their own contact information and use to give educational presentations. Local advocates will have many ideas about what they want to work on, but we hope everyone will consider making an appointment to give a presentation using the materials to their county Board of Supervisors. That would make a big difference all over the state.

Are there any future plans for Californians for Olmstead and/or the Advocacy Toolkit?

The CFILC Systems Change Network is making plans for ways that Independent Living Centers may use the materials to organize disability campaigns in their local communities. Stay tuned!

Is there anything else you would like people to know?

Yes. The most important thing about the Olmstead decision was that it ruled that segregating people on the basis of their disability is illegal. Segregation violates American principles. It is important for the whole community, not just for people with disabilities, that policies at all levels of government are inclusive and support the participation of all members of society. Everybody matters.

If readers have other questions, how can they obtain more information?

We have a website at www.californiansforolmstead.org. Readers can download the Toolkit, get more information and resources, and can join the coalition there. My contact information is: Laurel A. Mildred, MSW, Olmstead Advocacy Director, California Foundation for Independent Living Centers, Inc., 1234 H Street, Suite 100, Sacramento, CA 95814. (916) 325-1690, ext. #311; laurel@cfilc.org

January 19-21

Health Action 2012 will provide advocates with the knowledge and tools they need to protect, implement, and optimize the Affordable Care Act. For more information, please visit www.healthaction2012.org, write, or call Families USA at 1201 New York Ave. NW, Suite 1100, Washington, DC 20005, 202-628-3030, conference@familiesusa.org.

February 15-18

The National Association of Area Agencies on Aging (n4a) is the leading voice on aging issues for Area Agencies on Aging and a champion for Title VI Native American aging programs. Through advocacy, training and technical assistance, they support the national network of 629 AAAs and 246 Title VI programs. The Fifth Annual n4a Leadership Institute will be at the Mason Inn Conference Center & Hotel at George Mason University, Fairfax, VA. For more information, go to: www.n4a.org/training-events/leadership-institute.

March 28 - April 1

The ASA Conference, with more than 3,000 attendees, is recognized as a showcase for programs and projects that can be replicated, a forum for policy discussion and advocacy, and a prime source of information on new research findings in aging. It is the largest gathering of a diverse, multidisciplinary community of professionals from the fields of aging, healthcare and education, along with business leaders from across the United States. Family Caregiver Alliance will host several sessions, including "Family Caregivers: Policy Perspectives and Media Musings," in addition to a reception to honor the 2011 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards. The reception will be held at the Marriott Wardham Park Hotel at 6:30 p.m. and will include presentations about the awarded program or project in three categories: Creative Expression, Policy and Advocacy, and Diverse/Multicultural Communities. For details, visit: http://asaging.org/aia12/

Grant Opportunity: National Institute On Aging

One of the potential topics for a grant includes research on how aspects of the financial crisis have influenced the tradeoff between working and caregiving. The earliest submission date is January 5, 2012. For more information, visit: http://www.nia.nih.gov/research/funding

Lewey Body Dementia Association Survey

The survey will also assess the well-being and quality of life for caregivers of individuals diagnosed with the neurodegenerative diseases. Internet access is required to participate in the study, and LBDA needs 500 caregivers who are currently providing care for each different disease that is being studied. For more information, or to participate, visit: http://www.lbda.org/go/caregiversurvey

Shire Announces Recipients of the BRAVE Awards

Approximately 400 caregivers from seven countries were nominated for the award in 2011. The Shire BRAVE Awards Selection Committee completed a vigorous, comprehensive review of the qualified nominations. The resulting finalists were then voted on by Shire's employees worldwide to determine the 10 deserving recipients, who each received $10,000. Shire also recognized four additional caregivers as distinguished honorees, who each received $2,500. For more information, visit: http://www.shire.com/shireplc/en/media/shirenews?id=537

Physicians and Their Patients' Caregivers Benefit from Technology

Likewise, the more engaged the caregiver is, the better the outcomes for patients. "If we have a caregiver who is unable to provide care, or is over-burdened, or overly stressed out with care, there's a much greater likelihood that the patient will need to be placed in some sort of facility, which is much more expensive and costly," said Sarah Czaja, PhD, scientific director at the Center on Aging at the Leonard M. Miller School of Medicine, University of Miami. Czaja, who has been involved with several research projects aimed at providing technology to caregivers, said caregivers often do not know about resources that may help them. The help caregivers are looking for can be simple moral support through online support groups, ways to communicate directly with the doctor electronically, or more advanced technology that can be the eyes and ears watching over that patient when they can't. Physicians carry the greatest influence in prompting caregivers and patients to try a new technology or tool. "Technology has a lot of potential ways to aid both the caregiver and the physician in terms of management of care," Czaja said. "They must work together to identify the options that work best for everyone." For more information, go to: http://www.ama-assn.org/amednews/2011/12/05/bisa1205.htm

UWM Partners with CareConscious to Deliver TCARE to Family Caregivers

The UWM Research Foundation Inc. is a nonprofit corporation that supports research and innovation at UWM through a variety of programs, including patenting and licensing. CareConscious will integrate the TCARE (Tailored Caregiver Assessment and Referral) system developed at UWM with the CareConscious Web-based platform for family caregivers that educates, supports and encourages healthy family caregiving and proactive senior care planning though all stages of life. CareConscious's mission is to continually advance positive caregiving outcomes through technological innovation, unique content delivery and precisely customized programs that make family caregivers' lives easier, healthier and more manageable. The majority of caregivers spend an average of 20 hours per week providing care, in addition to holding down a full-time job. Upon completion of the Internet program, family caregivers will know what to expect and have guidelines they can rely on in the future; can improve emotional, financial, legal, medical, familial and residential situations; can better prepare important financial, legal and medical documents; and can get and remain more organized and prepared (saving valuable time and money). For details, go to: http://www.newswise.com/articles/uwm-partners-with-careconscious-to-deliver-tcare-to-family-caregivers

Access to Caregiving Options Can Present Barriers for Immigrants

Banghwa Lee Casado, an assistant professor at the University of Maryland School of Social Work, conducted a study of 146 Korean American caregivers in Maryland and northern Virginia to examine access barriers to using home- and community-based programs, such as respite care, adult day care, home health and transportation services. The study's results indicated that a good majority of the subjects had never used these services. A lack of awareness was the most cited reason for not accessing these services. For example, more than eight out of 10 reported having no knowledge of respite care and caregiving support groups. "We know anecdotally they have limited resources," said Casado, who presented her findings at The Gerontological Society of America conference last month in Boston. "But without the data, we can't show evidence there is unmeet need." Casado said her findings ? which also could be broadly applied to other limited English populations ? could help social agencies improve their education outreach and work with community groups focused on ethnic populations. For more information, visit: http://weblogs.baltimoresun.com/health/2011/12/access_to_health_care_services.html

A Guide to LGBT Caregiving

The first publication of its kind, A Guide to LGBT Caregiving addresses a range of concerns?from advance directives and other legal documents, to considerations regarding self-identification, to the realities of discharge planning and home care. The guide also places these issues in historical context, shedding light on the role LGBT caregivers have played and the reasons some members of the LGBT community are concerned about their encounters with health care providers.

"Many LGBT older adults, who are often estranged from their families of origin, must rely on partners, friends, and families of choice for caregiving. Because these relationships are not recognized under federal and many state laws, LGBT caregivers are often denied the resources and medical decision-making authority extended to their heterosexual counterparts," said Catherine Thurston, senior director of programs at SAGE. "Developed in collaboration with United Hospital Fund, an organization committed to quality health care for all New Yorkers, this guide acknowledges the importance of LGBT caregivers' relationships, while providing them with essential support during an often difficult time." Available in English, Spanish, Chinese, and Russian, the guide is the latest addition to the Next Step in Care website, http://www.nextstepincare.org , which was created by United Hospital Fund to improve the working relationship between family caregivers and health care providers.