CCAL Advancing Person-centered Living

CCAL Advancing Person-centered Living Chair: Jackie Pinkowitz; Founder & Vice-Chair, Karen Love

07/11/2012

The National Dementia Initiative: What Matters Most
By: Jackie Pinkowitz, M.Ed.; Board Chair, CCAL; Managing Partner, FuturAge
www.ccal.org/blog

Like most significant efforts, The National Dementia Initiative “will take a village” to achieve its lofty purpose which began in 2011 with the germ of an idea: CCAL should gather a leadership team representing research, policy and practice sectors that would:

■Work diligently to connect dementia experts from all three sectors across the United States and beyond
■ Who will volunteer their time and expertise
■To collaborate virtually and in person reframing dementia care by using a person-centered holistic well-being philosophy and approach
■ In the context of understanding and responding to “difficult or challenging” behaviors through person-centered non-pharmacologic practices.

In the ensuing months, “sixty villagers” heeded the call and began virtual communications in preparation for our all-day gathering on June 29th, 2012 in Washington, DC. — a gathering that can only be described as passionate, intense, and singularly focused on our common purpose. Today, the villagers are back home, enthusiastically volunteering for three workgroups being formed to advance this effort.

To truly understand What Matters Most in our Initiative, you need to gaze upon some of the faces in this blog: faces of those we love, care for, and caringly assist with utmost respect and dignity.

When I opened our all-day gathering, framed photos of “Those who Matter Most” decorated every table and a beautiful kaleidoscope of faces flashed across the screen as I acknowledged: “Clearly the most important people in our village are not here today—the people living with dementia, their families, and their care partners. But they are with us in spirit and we honor them through all the wonderful pictures so many of you provided. I know that if we continue to work together with open hearts and open minds, we will have an incredibly meaningful and productive meeting; and we will succeed in advancing this most important Initiative for these most important people.”

So I urge you, regardless of whatever Change Effort you may be conceiving or currently leading, to truly understand what drives your amazing villagers (i.e. What Matters Most to them; what motivates and energizes them to give their all for a greater good) so that you may tap into it throughout your entire fascinating future-focused journey of change…

06/23/2012

Alzheimer's -a One-way Time Machine
by: Lon Pinkowitz, EVP FuturAge Consultants; Advisor to CCAL
www.ccal.org/blog

Having been a caring witness to the long goodbye that is Alzheimer’s, that eventually ended the lives of my father and mother-in-law, I know well the ravages it wrought to their minds and bodies. Watching the devolution of a life is a painful process, but if one pays attention there is an opportunity to discover the essence of a loved one, as the carefully crafted layers of a life history begin to peel away. It is a time machine of sorts, one that can offer an opportunity to better view the unencumbered core around which their life was built.

Over the last five years of my father’s ten-year journey, his life as an electrical engineer vanished and soon he and I, no longer remembered as his son, but rather a friend he had come to know, shared his vivid experiences during WWII. This emotionally charged part of his life had deeply etched memories. I got to know him as he recounted the good and bad of those experiences, as well as his relationships with fellow soldiers/friends who were now back among the living.

As time passed, WWII slipped into oblivion, and my father revisited teenage years; years replete with the newly reconstructed reality of his core as an artist. He shared with me that he, his brother and father had been together just the day before. He confided in me that this resort hotel (an Alzheimer’s home to those not privileged to share his vision) was a favorite place that they liked to go to relax. He happily recounted what they had done, giving me insights into feelings he had that I would never had known had we not traveled together, raconteur and avid listener.

Unrelentingly, Alzheimer’s deconstructed his body as well, eventually stealing the ability to communicate, his control over bodily functions and his auto-immune system, all of which required a skilled nursing facility for the last 10 months of his life.

Although the journey was emotionally wrenching, I appreciate having had the opportunity to discover the essence and building blocks of the wonderful person that was my father.

05/16/2012

Living with Dementia
by: Richard Taylor, PhD – Author, Alzheimers from the Inside Out, Richard’s experiences and people’s reactions to his eight years living with symptoms of dementia.

In the eyes of many others, sometimes even the eyes of care-partners, I am seen as less than a complete someone. Just because my memory sometimes fails me, just because my cognitive abilities some seem to slip, jus...t because I don’t always think like you do, nor do I remember as much or how you do –

Please, please know that in my own eyes, and I hope your eyes, I am still a whole and complete someone. I am still me. I am still Grandpa, and Dad, a friend, and whole and a complete human Being. I am in my mind still and have always been a complete person.
I am not becoming any less a person simply because I cannot remember like you, talk you do, or think as you do. I know many of you want me to be who I was yesterday, or last year, or the last time they saw me, but I cannot be.

I have ceased looking back over my shoulder at who I was, and now spend most of my time working on who I am , today!

From – Alzheimer’s from the Inside Out –
Health Professions Press, 2006
By Richard Taylor, Ph.D.

“I race up and down the corridors of my mind, frantically seeking to make sense of what’s going on around me. Sometimes this process makes me even more lost, and I become lost about why I am lost!

It is amazing to me to ponder the possibility of missing the ultimate unique moment of my life, my death, because I have no words to describe it, or understand it, or appreciate it.

Perhaps too much time is spent trying to answer and question each other, when what I really need is to feel like I am being heard. I know you don’t have all the answers. You also don’t have all the questions!

“Don’t worry if you don’t know all the answers,” says the examiner.
“Which ones is it okay for me to not know?” ask I.

How can I do this “right” in the morning and “wrong” in the afternoon? Why do I recall details no one else remembers and forget major points everyone knows?

05/09/2012

The Right to Choose
by: Joe Stango, Founder, President Dora’s Hope
www.ccal.org/blog

There is a great debate raging throughout our country today. It is the resurgence of the age old issue regarding a women’s right to choose. Oddly, it is the notion of freedom – religious freedom – that has seen this issue re-emerge and in a big way. We are a nation, beginning at our very birth and throughout our history that continually asks the question “who are you to tell mewhat to do?” Or, to put it another way such as the young artist Sara Bareilles sings in her recent hit, “who made you king of anything?”

Whether the argument is about the government, a political party or a religious institution and the roles they each play in our lives, we, as Americans, don’t like anyone telling us what to do. We are a people who want to be free to make our decisions based upon our own beliefs and our own conscience.

Regardless of whether you or I agree with this premise is not the issue. The simple truth is it exists – period, end of sentence. Oddly, it exists within both major political parties but, perhaps, in different ways. One wants to do away with “big” government while the other wants to do away with “big” business. Republicans want to “get government off the back” of its people so that they can be free to go out into the world and do what they do best via a smaller, less intrusive government. Democrats, on the other hand, want to free us from the “injustice” that major institutions, secular or religious, seemingly “force” upon us. Wall Street or Wal-Mart, they rally against “big” corporations and the monopolizing affects they have on society. What I fail to understand however, is why neither the republican nor democratic argument seems to spread beyond the healthy and the young to the disabled and the aged.

Medicaid is a government sponsored “healthcare” program. For most seniors and disabled citizens, it is a government sponsored “long term care” program. I might add that it is the primary source for long term care services for all Americans – yet no Republican discusses getting the government off the “backs” of those affected by it. No Democrat talks about a woman’s “right to choose,” or for that matter, anyone else’s right to choose where the care is delivered. Neither party discusses the government sanctioned “monopoly” that exists because of Medicaid’s mandate that Medicaid health care services be delivered in an institutional setting rather than allowing consumers to choose for themselves where they will receive their care, in an institution or at home surrounded by their loved ones.

More disturbing to me is either side’s lack of outrage that government is intruding in the lives of its people resulting in parents losing their children, wives being separated from their husbands, and good Americans being taken from the community’s and church’s that they love.

Where is the justice department’s investigation of discrimination, disable-ism, disabled profiling and bias? Where are the politicians pounding the podium declaring to Americans that the questionable practices of this government, a government “of the people, by the people and for the people,” are wrong and that they must be changed? Where are the congressional committee hearings investigating why the government has suspended liberty and incarcerated fellow Americans against their will? Where is the senate finance hearing investigating why taxpayers are footing the higher costs for these practices when, with full knowledge, the committee knows community based care is less expensive? Where is the anger over the monopolistic tactics of the institutional care industry and their lobbyists? Where are the investigative reporters seeking answers as to why government has run amok or stories on corporate greed of institutional care providers?

Finally, and I speak with humnility and in the most solemn of tones, I ask where are our religious leaders to speak on the immorality of these government tactics? Where is our Reverend King to speak about the hope being denied our fellow Americans and their dream of freedom? Where is our Reverend Bonhoeffer – a Lutheran minister who, under the threat of the N**i party in the 1930s simply distinguished for us “cheap grace from costly grace” teaching us that grace comes from more than a declaration of faith it comes from an adherence to the word particularly when in the presence of injustice?

Where are you America?

In this country we believe that freedom should be granted to all. However, there seems to be an unspoken caveat that says ‘freedom for all….unless you are disabled because of age or disease.’ Then, and only then, you must forfeit your freedom and let the government take over your life, taking you from your family, your community and your sense of purpose, robbing you of “life, liberty and the pursuit of happiness. It seems we have yet to acknowledge that we are all, including the aged and disabled, creatures of God who embrace our freedom with the hope of making a difference in the lives of others and discovering, despite our age or disability, what God’s plan is for us.

The Reverend Dr Martin Luther King Jr. taught us that; black or white, yellow or red Jew or Gentile, Catholic or Protestant, Republican or Democrat, Asian, Italian, Cuban, Irish or any other ethnicity represented in this country, we all dream the same dream – the dream of Freedom. As Americans we have yet to realize that just because we grow old or become disabled does not mean we cherish our freedom any less – in fact, I will argue, we cherish it even more. As Reverend King once noted, “justice delayed is justice denied.” Under Medicaid we have denied freedom long enough. We have denied justice long enough. We have denied the “right to choose” to our seniors and our disabled brothers and sisters long enough.

It’s time to reunite individuals with their families, churches, communities and all whom they love; it’s time to bring hope where there is despair; it’s time to bring light where there is darkness; it is time to bring joy where there is sadness; it’s time to bring love where there is hatred and anger for a government that has forgotten its own people.

It’s time for Choice Centered Medicaid.

There is a great debate raging throughout our country today. It is the resurgence of the age old issue regarding a women’s right to choose. Oddly, it is the notion of freedom – religious freedom – that has seen this issue re-emerge and in a big way. We are a nation, beginning at our very birth and t...

Health Benefits of Residents’ VolunteerismPosted on January 27, 2012 by lonp By: Neal Miller, Operations and Data Specia...
02/09/2012

Health Benefits of Residents’ Volunteerism
Posted on January 27, 2012 by lonp
By: Neal Miller, Operations and Data Specialist at Masterpiece Living (MPL), holds a Master of Arts degree in Wellness Management and Applied Gerontology from Ball State University

Older adults who volunteer help more than just their community – they help themselves. Research on volunteerism suggests that people who that people who spend just two hours a week volunteering, experience greater longevity, lower rates of depression, higher functional ability, reduced incidents of heart disease and a greater sense of accomplishment than non-volunteers.

Building upon these findings, MPL sought to investigate other aspects of volunteerism within the successful aging network. Specifically, Masterpiece Living set out to observe the differences between volunteers vs. non-volunteers within MPL communities and how their rates of civic engagement compared with the national average.

Data from the MPL Lifestyle Review were examined for 210 residents living within a Masterpiece Living partnered community over the course of two years. These residents were asked 16 questions pertaining to volunteerism and then separated into two groups, the volunteers (those who participated in at least eight volunteer activities) and the non-volunteers (those who did not participate in any volunteer activities). The results demonstrate that the greatest difference between these two groups was within the spiritual component i.e., the volunteer group placed greater emphasis on personal beliefs than the non-volunteer group. Volunteers also reported using existing skills more regularly (including use of the computer), significantly improved memory over time and a greater ability to provide help and support to peers.

Masterpiece Living also examined the participation rates of volunteerism for the entire MPL network for five years, determining if the number of volunteers and volunteer activities increased, declined or stayed the same over time and how those numbers compared against the national average. Results indicate that the volunteer rates within the MPL communities were significantly – and consistently – higher than the national rates, and that Masterpiece community volunteers maintained these high levels of civic engagement over time.

From an economic standpoint, a contribution such as this is huge. According to the federal agency, CNCS, the value of the service provided by a volunteer in 2010 was $21.36 per hour, and the average number of hours a volunteer gives annually is 34. According to the MPL network numbers collected over the past five years, that’s nearly two million dollars.

As major proponents of civic engagement for health and well-being, we at MPL will continue our research on volunteerism to further explore how civic engagement influences residents’ greater physical, intellectual and spiritual health outcomes.

Will This Advance Person-centered Living?by Jackie Pinkowitz, M.Ed., Chair, CCAL. Coming from a state that has over 8,00...
02/04/2012

Will This Advance Person-centered Living?

by Jackie Pinkowitz, M.Ed., Chair, CCAL.

Coming from a state that has over 8,000 individuals with disabilities on a waiting list for supported community housing leads me to wonder: Will the following joint effort really advance independent, person-centered living for individuals with disabilities throughout our communities and our country?

In January of this year, U.S. Housing and Urban Development (HUD) Secretary Shaun Donovan and Health and Human Services (HHS) Secretary Kathleen Sebelius announced a joint agency partnership to enable nearly 1,000 individuals with disabilities to leave nursing homes or other institutions and live independently in communities.

This federal partnership combines rental assistance, health care, and other supportive services. HUD is providing rental assistance vouchers, administered by public housing authorities; and HHS is providing supportive services through CMS’ “Money Follows the Person” grant program.

“The Obama administration is committed to helping Americans with disabilities live independent lives. Housing is a critical piece of the equation when it comes to transitioning out of institutions,” said Donovan. “Coordinating this effort with the Department of Health and Human Services is an important step in ensuring that more Americans with disabilities will have the housing and support they need to fully participate in community life.”

“…I know that we will be able to dramatically change people’s lives,” said Sebelius. “Individuals with disabilities can have a life in the community that serves their needs and supports them in leading productive, meaningful lives.”

I can’t help but wonder if this joint effort will truly advance independent, person-centered living for individuals with disabilities in our country…What do you think?

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