Archive for ‘Direct care consumers’

Brave Old World

Posted by Aaron Pickering on August 26th, 2010 at 4:15 pm | No Comments »

A New York City direct care worker plays a leading role in one of the multimedia stories reported by the News21 program at the Columbia University Graduate School of Journalism this summer. Led by Paula Span, who teaches at the Journalism School and blogs about aging for the New York Times, 10 newly-graduate journalists spent 10 weeks exploring the challenges facing an aging nation. Their website, Brave Old World, includes a video portrait of the many places and ways older Americans live; the six videos were featured on nytimes.com in August.

The video portraying home care features 85-year-old Manhattanite Stanley Ryback and home care aide Emily Ortiz, employed by People Care/Metropolitan Jewish Health System. Produced by News21 fellows Patrick Egan and Sherisse Pham, with help from Alex Berg, it follows client and assistant through a summer day. Ms. Ortiz explains her role as she shops, cooks and accompanies Mr. Ryback on a walk. And her client is frank in his appreciation. “God came and brought her to me,” he says.

Our deepest appreciation and gratitude to Paula Span, Patrick Egan, Sherisse Pham – and, of course, Emily Ortiz – for their beautiful work.  To see more videos and stories, visit http://columbia.news21.com

Changing Disability Culture: Liberty and justice for all

Posted by Lynne Wichmann on August 16th, 2010 at 10:46 am | 3 Comments »

Lynne Wichmann

Happy birthday to the ADA. Twenty years ago, the American with Disabilities Act became law. This law guarantees social, professional, personal access and equity for people living with disabilities. This major civil rights legislation promotes a core value of the U.S. Constitution and a universal desire. Liberty and justice.

Liberty and justice. A basic tenet of democracy and a universal desire. Liberty and justice suggest equity, opportunity, and inclusion for all people. They promote human dignity, civil rights, and independence, and exemplify the ability of people to live and work in the settings they choose and create self-defined avenues for professional excellence and personal empowerment. During these 20 years, we have experienced positive change and powerful advances around disability culture. We celebrate those advancements. And we have, still, much work to do.

Too often cultural oppression and social regression create the transgression of limited choice, unfair treatment, and absence of opportunity. Inequity and exclusion exist. Unemployment and underemployment of people living with disabilities is well above the national norm. According to the Bureau of Labor Statistics, of the 18.6 million people living with disabilities employed aged 16-64, 60.1% of men and 51.4% of women are employed. This is due, in part, to a skill deficit and a difficult job market. This is also a consequence of negative stereotypes from employers, from cultural norms, and from self-imposed limitations. As a result, poverty, despair, and a cascade of related barriers are evident. Ironically, studies also report a lower-than-average turnover rate and an average or higher-than-average level of performance from employees living with disabilities.

Ironic, too, is the fact that direct care workers experience similar barriers to excellence and empowerment, though the workload burden is converse. Continue reading »

Direct Care Workers Help Ensure Consumers’ Medication Adherence

Posted by Aaron Pickering on August 2nd, 2010 at 9:58 am | No Comments »

Aaron Pickering

More than 50 percent of people with chronic conditions don’t take their medications properly, which affects their well-being and the ability for direct care workers to provide the highest quality care.  To help remedy this problem, the Direct Care Alliance is proud to be a committed partner in the National Consumers League’s Medical Adherence Campaign, an initiative aimed at raising awareness of the importance of good medical adherence.  The campaign targets consumers and health care practitioners nationwide, and will be rolled out in early 2011.

On July 20, I joined a committed group of public and private organizations at AARP in support of the campaign. Continue reading »

Caregiver, Friend: A Pillar of Strength

Posted by Thais Abernethy on May 24th, 2010 at 8:57 am | No Comments »

Thais Abernethy

I’m fascinated by our body’s reaction when it’s sick or emotional. It’s such a wonderful machine that serves us well if we would only stop long enough to listen. Sometimes, we just don’t give ourselves permission and time to process our day’s events. In Papi’s case, his body would let us know sometimes days before a major event happened to him. Larry (our wonderful caregiver and Papi’s companion) and myself could get prepared and look for those signs that let us know something was not right. Between Larry, hospice and myself, we made my Papi as comfortable as possible. I enjoyed this unconditional service to him. It brought me joy – it brought me peace – it brought me closer to him and closer to Larry.

Larry Myers was my papi’s caregiver, companion and friend. They were together for over 3 years and I could not have survived this journey without him. Larry was one of my pillars of strength and anchor in a time of turmoil and uncertainty. He’s very knowledgeable in the art of giving and therefore my example of what a caregiver should be. I so honor and respect him as a human being, as a friend and as a professional caregiver. I learned a lot from him. I so hope and desire for him to find another family that will respect him and honor him as well. Read the rest of my post.

You Live An Interesting Life

Posted by Lynne Wichmann on May 24th, 2010 at 8:41 am | 5 Comments »

Lynne Wichmann

I live an interesting life. Some years back I ran a marathon – 26.2 miles– in 3.5 hours. Four years ago I could run a mile in 8 minutes and I could do 5 of those miles without rest. Last September I participated in a competitive race. I had the pleasure of returning to that marathon. My wheelchair bike and I entered the 26.2 mile event, and it took us than an almost five hours to finish. The races I used to run were a solo event. My recent race was a team effort, as I carried with me the love and encouragement of so many good folks. The experience was exhilarating and the finish was ecstatic.

Living with a physical disability is a new experience for me. My legs are partially paralyzed. I have multiple sclerosis. Each day I am surprised that this disability has taken up residence in my body in such an obvious manner. This is also baffling to people who have known me for many years. I no longer have the leisure of being anonymous, blending in with a crowd, mingling privately with the masses. The responses I receive from people are as varied as my own reactions to this experience. Occasionally I see disdain, which is a reflection of one’s stereotypes of differences; sometimes I see fear, which is fear of one’s own vulnerability. Frequently I see curiosity and I appreciate questions more than silent speculation. Most often I see authentic interest in how someone can be of assistance to me, and during those moments I see, and experience, the gift of others’ pure personal goodness. This is a bright blessing. I live an interesting life. Continue reading »

The Privilege of Disability

Posted by Lynne Wichmann on April 23rd, 2010 at 9:58 am | 6 Comments »

Lynne Wichmann

The privilege of disability. The pride of diversity. The power of us. We are together, you and I.

In this culture that creates ample opportunity for individuality, we forge a fierce allegiance and a powerful alliance. We are caregivers for each other, you and I. We tend to physical needs. We tune in to emotional states. We hone our own abilities and we honor each other’s talents. This is perfect symmetry. As we care for each other, we demonstrate a seamless partnership. This occurs through our mutual and deliberate promotion of dignity. We know that wellness is a conscious, self-directed and evolving process of achieving full potential.

Fifty four million Americans live with disability, either an obvious disability such as multiple sclerosis or a hidden disability such as mental illness. Disability may result from a congenital condition, may be an acquired condition due to disease or illness or may occur due to an accident. Research predicts that the incidence of disability will rise as Americans live longer. The historical approach to disability and rehabilitation has been a medical/clinical model with a narrow focus on trauma and recovery. Together, you and I create a new view of disability. We focus on resilience, redirection and redefinition of disability. Continue reading »

In the News: staff cuts, budget setbacks and more

Posted by Leonila Vega on March 11th, 2010 at 10:48 am | No Comments »

Leonila Vega

One of the best ways to become empowered is to get informed.  When you’re informed about what’s happening in your state and across the direct care profession, you are better able to take action and have a voice in the decision-making process.  I can’t tell you enough how important it is for you to get involved and speak out – you are not alone.  There are over 3 million direct care workers in this country and over one million new positions are needed by 2018, according to the U.S. Bureau of Labor Statistics.

According to PHI, direct care workers in the U.S. will outnumber teachers from kindergarten through high school (3.9 million) and registered nurses (3.2 million) by 2018.  In Pennsylvania alone, an additional 56,000 direct care workers will be desperately needed in the next five years.  These facts are stunning and should encourage you to  have a role in the movement for change.

This week, I wanted to call your attention to a few headlines. Continue reading »

Maine Tables Report on Improving Home- and Community-Based Care

Posted by Helen Hanson on February 11th, 2010 at 4:45 pm | 3 Comments »

Helen Hanson

Well, our report is complete, but it has not yet been presented to the Legislature.

As you know if you’ve been reading this blog, I am part of a team that was appointed by the state of Maine to recommend ways that the Legislature’s Health and Human Services Committee could streamline long-term care service delivery, address equalities in the services provided, and hopefully gain some cost savings, which can be passed on to workers in the form of livable wages and benefits such as paid time off and health care coverage. We finished our work in early January, and the report was supposed to be released later that month.

But I just learned that the Department of Health and Human Services (DHHS) has put it on the back burner instead. Continue reading »

US News Explains Role of Caregiving Staff in Culture Change

Posted by Elise Nakhnikian on January 31st, 2010 at 10:35 pm | 1 Comment »

As part of its annual Best Nursing Homes issue this month, U.S. News and World Report includes a feature on how culture change can transform a nursing home into a good place to live by respecting residents and fitting care plans and schedules to their individual needs – and by empowering caregivers and nurturing their relationships with the residents.

The feature begins with an anecdote about a man who loves to visit his mother at the home, Evergreen Retirement Community in Oshkosh, Wisconsin, because of “the easy warmth of the nurses and aides,” who he says are like “kid sisters” or his own daughters.” Continue reading »

Martha Stewart Calls for Help for Family Caregivers

Posted by Elise Nakhnikian on January 31st, 2010 at 9:14 pm | 1 Comment »

Martha Stewart

“Whether or not you care about older people, you will, if you’re lucky, be one of them. It’s not just a demographic. It’s personal — it’s you, your parents, your aunts, uncles, friends and children. We need to do a better job caring for this population — and supporting those who care for them,” writes Martha Stewart in a January 20 post in the Huffington Post.

Stewart notes the absence of any discussion about that fast-growing population in the coverage of the health care bill, saying “We, as a nation, are utterly unprepared for this rapidly approaching ‘silver tsunami.’” She calls for better geriatric training for medical professionals and better support for family caregivers.

Stewart also endorses the CLASS Act, noting that it would provide people with cash for home care, adult day programs, assisted living, or nursing homes. “We must not lose sight of a pressing need for solutions that will offer older adults and their families some financial protection,” she writes.

Stewart is the founder of the Martha Stewart Center for Living at Mt. Sinai.

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