All You Need to Do is Step Up and Be Heard

This month’s FEATURED EXPERT is Karen Love, the founder of CCAL.  Ms. Love has worked in the aging services field for many years, has been involved in public policy efforts, and has participated in applied research.  She has also been a family member consumer of aging services and supports as her grandmother lived in a nursing home, and her father, who had Alzheimer’s disease, needed most all of the home and community-based services and eventually became a resident in an assisted living community.

All You Need to Do is Step Up and Be Heard
by Karen Love
Founder, CCAL

A number of recent events have me thinking a lot lately about the slow progress of improvement and advances in quality practices and outcomes in long-term care especially but also more broadly for aging services.  I began an aging services career as a nursing home aide my senior year of high school.  While I worked at what was considered to be a very good nursing home, I was saddened by many poor conditions for what should have been one of the most cherished group of people – our elderly.  Little did I know that sneaking in a preferred evening bath for a resident who otherwise was assigned to a morning shower and sitting on one non-ambulatory resident’s bed to hear stories about growing up were actions that many years later would have its own term – person-centered care.  My actions amounted to nothing more than common sense and compassion.  I was just an average teenager, but I managed to figure out ways to do things for the residents that resulted in improving their moods, and in some cases, their functional ability without adding any extra cost or time.

This begs the question of why then has it been so hard in the intervening three decades to make ‘humanistic’ care mainstream.  In that same time span, our country went from the norm of room-sized mainframe computers that had to be operated by IT experts to the present day where computers can be used by anyone and are small enough to fit in a pocket.  Americans obviously have the brainpower and creativity to innovate.  Why then has such an important group of our society been relegated to suboptimal choices and conditions?

Three decades in the aging field and opportunities to work in the practice, policy, and applied research sectors have given me some insights.  I believe there are three key reasons for the lack of progress: (1) there is no financial incentive to improve and advance practices; (2) the people who are on the receiving end of support and services – generally elders – are not in the physical or mental condition to become active advocates to demand change; and (3) while there are many committed, caring professionals in the field trying to make improvements, they do not have a collective voice to empower the level of change needed to advance quality practices and outcomes nationally.

There was a financial incentive to innovate smaller computers that could be used by average people.  Huge new multi-billion dollar industries in hardware, software, and electronic games have emerged.  There is no corresponding financial incentive to innovate in service sectors such as aging, education, and mental health care among others.  Where innovation is happening in aging services is in maximizing profits by using the real estate of continuing care retirement communities, nursing homes, and assisted living to spin off new equity investments.  A scary but recent trend is for large equity investment companies to acquire the real estate of companies providing aging services.  The ‘customer’ is the shareholder/stockholder not the receiver of the aging services, so there is little incentive to advance quality care practices and outcomes.

It would made sense then to look to the receiver of the aging services to motivate improvements and change.  Consumers (defined here as elders, individuals with disabilities, their family members, and others involved in their care network) have largely been quiet and complacent about quality expectations.  I know of people who pay nearly $10,000 a month for care in assisted living who when their loved one with dementia begins to exhibit behaviors such as pacing and asking the same questions repeatedly are required by the provider to hire one-on-one caregivers on top of the $10,000 monthly expense.  These are not single instances, but rather ones that happen all too frequently.  Do consumers have the power to change practices?  Consider what enraged airline travel consumers made to sit on tarmacs in closed airplanes for hours on end were able to recently accomplish; a call for U.S. Congressional hearings and changes in legislation to address this issue.  These consumers’ ‘quality of life’ was impacted typically for less than one day at an average airline ticket cost of under five hundred dollars.

Why is there no collective outrage from consumers of aging services about suboptimal practices that affect daily life at a cost significantly in excess of $500?  Parents, especially those of children with disabilities, will become passionate advocates over suboptimal practices.  Individuals who experience an egregious aging service practice that results in a severe disability or death often end up litigating against the provider.  This action might address retribution but does not change the status quo.

The third reason I believe there has been a lack of progress in advancing quality practices and outcomes in aging services is that the professionals who have knowledge about and are implementing person-centered services and support work for the most part singularly.  The lack of unification dissipates the power of widely spreading improved practices and outcomes.

Our nation faces unprecedented challenges in the coming years that will likely overwhelm an already imperfect system of aging services and supports.  There currently are insufficient workers to meet the care needs of elders in America and this problem is expected to worsen as the aging demographic spirals upwards over the next thirty years.  Already, the U.S. has more people age 65 and older than the whole population of Canada.  If consumers of aging services are not willing to step up and advocate for change, than who will?

CCAL was founded on the belief that consumers collectively have the ability to inform and impact change if they have a way to channel their collective voices.  CCAL has created numerous ways for consumers of aging services and supports to channel their collective voices; all consumers have to do is step up and be heard.

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2 Responses to All You Need to Do is Step Up and Be Heard

  1. kate lohse says:

    Dementia Care: The Quality Chasm

    Could you please inform me on how this important white paper is progressing in US. Currently I am researching progress on this paper at University of Tasmania.

    Thank you
    1 December 2014

    • Lon Pinkowitz says:

      The Quality Chasm is viewed online about 200 times each month. Since it was posted, it has been downloaded over 1,000 times

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