Mandate Prompt Public Release of Info on DHSS LTC Visits

The following entry was started in January 2014.

That was the month my Mom passed. 

My frustration and anger over the months preceding her passing, the failure of the facility to allow us to provide Hospice from an outside source as we saw her decline and realized time was most possibly short, was still filling my daily life.

There had been an incident of possible abuse involving touching inappropriately at Mom's facility  and another facility that had reached the news media.

Facilities depend on "good press", positive PR and place ads to secure residents; it's what determines their staying open -- residency stats.

I understand caution but we wanted a Hospice from a well recognized and highly respected medical facility. This wasn't a private company, or private individual.

We saw and knew the facility allowed "outside" Private Duty Nurses. 

Why did they deny Mom and our family "outside" Hospice?

Wiser, now, we've read the Medicare and Medicaid guidelines and saw how much the facility could lose in income if we had "outside" Hospice.

MONEY.  As always, it comes down to that one decisive "worldly" item. Sad. Sick, really. Not about a human life; not about dignity or choice. Self centered. Self focused. Or so it still seems.

It's now January 2016. Mom's passing has been two years. Husband's passing, five years. Both in January. Mom passed on the date of the day we interred my husband. Not a great way to remember.Time continues. Memories remain.

What's New?  What's Changed? Where are we two years later?

Unfortunately, not very far. 

A couple of States, as cited in this blog, have started to provide more specific and enlightening information on Long Term Care or whatever your State calls caregiving for individuals providing Medical Care along with various services and are specifically governed by State Regulations and State Review.

Here's what I wrote back then:

THERE NEEDS TO BE A LAW in this tech saavy age. 

States publish results of investigations including complaints/licensing of Skilled Nursing Facilities or Long Term Care Faciities on their websites several weeks and sometimes a month or more after the conclusion of an investigation.

Many do not list previous citations and few list descriptions and often cite only sections of laws without explanation or clarification. When there's a fine involved, there's usually not a detail of what the fine was based on in clear, concise and specific language easy to read and reference to see causes, effects and outcomes. 

When the DHSS or other authority goes in, they might find additional violations and they may choose to fine based on a "lesser cause". None of this is provided to the general public.

You and I remain in the dark about the real quality and safety of placing ourselves or a loved one inside the walls of care giving facilities who totally take over lives and determine the daily life of hundreds of individuals and the level of care they receive.

Recent investigation into my Mom's facility after two deaths believed to have been caused by incorrect procedures followed in her facility and other challenges to physical and emotional lives of several residents, has led me to voice this CALL TO ACTION:

WRITE YOUR STATE SENATORS AND REPRESENTATIVES. Let's get a five business day turn around for posting on line all findings of each investigation by our States regarding complaints or any other Department of Senior Services reports on Long Term Care Facilities. 

WHY? The AARP (previously the American Association of Retired Persons but now represents those aged 50 and beyond) has advised about 8,000 people A DAY turn 65. 

WHY?  My dedication to Senior Advocacy discovered several months ago the "oldest old", those aged 80 and above, represents the fastest growing segment of our older population, twice that of those 65 and over and growing at a rate of almost 4 times the total population.  It's estimated by 2050 to total over 19 million people.  http://transgenerational.org/aging/demographics

THE "SENIOR SENIORS"

"The nation's 90-and-older population nearly tripled over the past three decades, reaching 1.9 million in 2010, according to a report released today by the U.S. Census Bureau and supported by the National Institute on Aging. Over the next four decades, this population is projected to more than quadruple.

"Because of increases in life expectancy at older ages, people 90 and older now comprise 4.7 percent of the older population (age 65 and older), as compared with only 2.8 percent in 1980. By 2050, this share is likely to reach 10 percent.

"The majority of people 90 and older report having one or more disabilities, living alone or in a nursing home and graduating from high school. People in this age group also are more likely to be women and to have higher widowhood, poverty and disability rates than people just under this age cutoff.

"These findings come from 90+ in the United States: 2006-2008, which presents an overview of this age group and a comparative analysis of selected demographic and socio-economic differences between people 90 and older and their younger counterparts within the older population. Statistics for the report, which go down to the state level, come from the 2006-2008 American Community Survey 3-year estimates and 2008 1-year estimates, as well as census and projections data."

WHAT'S NOT MENTIONED:  Many of our "Senior Seniors" have outlived extended family and friends and often even immediate family members.  

They may have no one visiting, speaking on their behalf or there for them except those working in the facility and many who should speak up, try to do their best to keep their position and eventually leave because they cannot stomach what they see and hear.

MY OPINION:  Most residents of Long Term Care with Medicaid beds are on some form of Federal/State Assistance (Medicaid) or provided care by a Charitable Organization.

Having lived lives through many economic challenges, their "savings" were long ago spent on providing life's basic needs. 

We will most probably endure the same challenges if we live into those most Senior of years, 90 and beyond. 

Where is our value for those who went before us, those who paved the way for all we have today, those who sustained life through war and tried to keep the peace?

It's critical we raise our collective voices to ensure those who are entrusted with the care of this growing and very vulnerable population, especially those housed in Long Term Care, are afforded individual rights. 

We need to ensure the safety and well being of our National Human Treasures.

We must understand the importance of ensuring the amended Rules and Regulations to the Older American's Act, necessitated twenty six years ago by the Federal Government and entrusted to the DHSS and each State's division that are not fully practiced are revisted, revised and enforced!

If information on findings from regularly scheduled and consumer directed investigation can be provided to the Facility, it should be provided to the general public when decisions are made. 

We shouldn't have to wait until there's a "resolution" or "correction". A notation this is the initial finding and actions required should be noted.

My opinion is if the allegation was made, if the DHSS found evidence to make an investigation, there should be public advisory.

Anyone who can provide reason why this shouldn't be the case, please add your comments to this blog entry.

We, the general public, are who depend on information to often make immediate life changing decisions for ourselves, as caregivers or family members necessitated by physical or mental declines needing 24/7 care the family cannot provide for whatever reason.

We know from experience, decisions for life altering living arrangements don't always come with long time advance planning, especially for those not interested in going into "step up/step down" facilities where you move from Independent to Assisted to Long Term type care OR you find a severe medical challenge necessitates immediate decision making.

YOU, and those who you trust to make decisions about your living and life, deserve continual and immediate information about the quality of care, the violations current, past and ongoing, among facilities.

It's your life. It's our society's choices as to what we accept, what we tolerate and what we decide to change.