Archive for ‘Direct care consumers’

No Right Way to Talk: Helping those we serve make their voices heard, too

Posted by on December 7th, 2010 at 10:34 am | 1 Comment »

David Moreau

I bring Donnie and Louise into WAI to get the dry mops.  All the participants are sitting politely at a big table.  They each have a piece of orange construction paper placed in front of them. They wait while two staff people are over at their desks cutting brown strips of paper. As we squeeze by, Noelle says to me in her little girl’s voice, “You lose your power?”

We had a heckuva storm last night. Wind and rain.  Everyone’s been talking about losing their power. I was just about to answer her when one of the staff people across the room says firmly, “Noelle, TALK like an ADULT.”

As I pass by the staff person I ask, “How is that not like an adult?”
Continue reading »

Mother, Celebrity Wife and Family Caregiver: Shelley Unser describes caring for her daughter

Posted by on November 22nd, 2010 at 1:14 pm | No Comments »

A couple weeks ago I met Shelley Unser, an incredibly inspiring and motivated woman who spoke at the New Mexico Direct Care Givers Coalition Conference about her caregiving experience.  Shelley – former wife of famous racer Al Unser, Jr. – discussed the challenges of caring for her daughter Cody, who was left paralyzed by the rare disease called Transverse Myelitis.  Shelley described the fear and frustration she experienced as a caregiver, and talked about the importance of taking care of yourself and looking for resources and support in the community, such as the New Mexico Direct Care Givers Coalition and other groups.


Continue reading »

New Mexico Direct Caregivers Coalition Hosts 2nd Annual Statewide Summit

Posted by on November 1st, 2010 at 10:29 am | 1 Comment »

Mark Cerna

On November 5, the New Mexico Direct Caregivers Coalition will host its 2nd Annual Statewide Summit: Caring Across New Mexico.

We’re gearing up for the event, which brings together all stakeholders in the field of direct care, including:  direct care workers; the elderly and individuals living with disabilities that employ caregivers; state agency employees; caregiver agency administration; and family and friends of caregivers.

The Summit is a venue for communication among caregivers on career opportunities, job advancement, job benefits, advocacy and legislation affecting those who provide care. The Summit is an opportunity for family and professional caregivers to come together to share what works in caring for the elderly and individuals living with disabilities.

Read more about the New Mexico Direct Caregivers 2010 Summit and register.

Direct Care Workers & Allies Advocating Together: Voices Institute model trains leaders in Wisconsin

Posted by on October 25th, 2010 at 1:43 pm | 1 Comment »

This is a guest post from John Shaw, Community Outreach/Advocacy at the Wisconsin Board for People with Developmental Disabilities.

This year, the Direct Care Alliance’s Voices Institute, the Wisconsin Board for People with Disabilities (BPDD), and the Wisconsin Direct Caregiver Alliance launched an exciting new initiative called Advocacy Voices Together – a unique training program for people who want to improve the lives of direct care workers and the people they support.

An inspiration for this project, the Voices Institute gathers direct care workers from across the country to learn leadership and advocacy skills.  BPDD and WIDCA recognized a need in the community to develop these skills in direct care allies, uniting stakeholders to call for change.  With this in mind, the three organizations launched Advocacy Voices Together to do just that.

Anne Rabin (right) and daughter Emily create an action plan for continuing to advocate along with a family member living with disabilities.

During the training event, direct care workers and people who receive long-term care services  worked together in teams to learn advocacy and leadership skills.  The group learned how to build support for better wages, benefits and working conditions for workers, and how to advocate for family members and self advocates with disabilities. The training incorporated the core curriculum of DCA’s Voices Institute, along with key principles from disability community self advocacy.

“This is another huge milestone for the Voices Institute,” said Tracy Dudzinksi, Vice Chair of the DCA Board of Directors, Chair of the Board for the Wisconsin Direct Caregiver Alliance, and President of the Board for Cooperative Care in Wisconsin. Continue reading »

From the Consumer Voice Conference: Direct care workers essential to quality care in nursing homes

Posted by on October 25th, 2010 at 1:22 pm | 1 Comment »

Helen Hanson

Last week, I got to attend the National Consumer Voice Annual Conference, which brought together ombudsman programs; advocates for long-term care, including a lot of attorneys; family members of those receiving long-term care; and workers and worker advocates from all over the country. There were also folks from Centers for Medicare & Medicaid Services (CMS) and the U.S. Department of Health and Human Services (DHHS).

Reauthorization of the Older Americans Act

We learned that the Older Americans Act (OAA) is due for reauthorization in 2011.  The reauthorization of the OAA provides an opportunity to reshape and modernize aging services. The OAA was originally signed into law back in 1965, and we’ve come a long way since then. Participants discussed what should be included in the reauthorization, and Official Listeners from the Senate Special Committee on Aging and the Administration on Aging in DHHS joined the group to learn more.

During this session, we discussed the baby boomers fast approaching their senior years.  In other words, we’re going to need a strong direct care workforce to take care of them. Something is going to have to be done to attract more people into the field of care giving. In fact, more direct care workers than teachers will be needed in the near future. Continue reading »

“Can We Talk?”: Fostering Open & Honest Dialogue About Aging

Posted by on September 27th, 2010 at 10:25 am | No Comments »

As expected, this video featuring comedian Joan Rivers is funny. And the goal of the public service announcement – encouraging families to have open discussions about aging – is important and admirable. But unfortunately the video employs negative stereotypes and a deflating message to highlight the importance of “aging parent” and adult child discussions about the future. It models how not to approach these conversations: “I’m old. I’m unattractive. I’m going to die soon. Let’s talk before it’s too late.” This part of the message doesn’t work for me.

Parents and their children need to avoid approaches that increase anxiety about what’s coming along downstream. Of course, end-of-life conversations are essential but there is so much more to talk about. Most often, these discussions can be and should be held within an uplifting and empowering context. “There is life yet to be lived and I’m going to help you live it – even if things get difficult.” Continue reading »

How Direct Care Workers Have Been Vital to My Recovery

Posted by on September 20th, 2010 at 11:26 am | 3 Comments »

This is a guest post from Patricia Volland, Senior Vice President for Strategy and Business Development at The New York Academy of Medicine.

Patricia Volland

On May 10, 2009, I was in a serious accident which left me with life threatening injuries. As a result, I am permanently disabled because of a spinal cord injury.  Before the accident I was a fiercely independent and physically active woman devoted to my career, my husband, and my wonderful circle of family and friends.  On the professional side most of my focus has been on making sure that as we age, we are able to stay independent and in charge of our lives.  These activities focused on helping to create a skilled workforce and working with older adults and in supporting the importance of care coordination that links health/medicine and social supports and long-term care.  So before the accident, I already understood and respected the importance of the direct care workforce in maintaining the health and independence of older adults and people living with disabilities.

In the five months I spent in various hospitals engaged in recovery and rehabilitation, I began to learn first-hand how critical direct care workers are in helping patients adjust to their new circumstances.  In many ways they are the main stay of acute care.  I found those that worked with me in the hospital to be compassionate, skilled and very interested in my personal well being.  They were responsible for all of my personal care needs – this level of dependence was new for me and they understood that.  They were there to turn me and avoid pressure sores, to encourage me to eat, to take care of my personal hygiene needs and to encourage me to regain my strength by actively participating in rehabilitation.  They pushed me to get better even on the days I felt overly depressed.  Most importantly they were there for me 24/7.

When it came time to go home and then back to work, we knew that independence was drastically reduced and that ongoing care would be needed.  My husband was and continues to be committed to making sure that I get the care I need to continue my life as I did prior to the accident.  Together, we knew that who we selected to help in my care would be critical in my ongoing recovery and rehabilitation.  In fact, they would be critical in my transition from five months in hospitals in the care of a vast team of interdisciplinary workers to my husband and a small cadre of direct care workers. Continue reading »

Brave Old World

Posted by 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. View it here.

Brave Old World

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 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 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 »

« Older Entries
Newer Entries »