Teri Dreher – Highway to Heart, Humor, and Honesty in Healthcare Interview

The following audio interview will be transcribed to text to create the upcoming charity/anthology titled HIGHWAY TO HEART, HUMOR, and HONESTY in HEALTHCARE.

Available late Spring/early Summer 2020.

VISIT the book page

 

Teri Dreher, an RN with 36 years of experience, is a pioneer in the emerging field of professional patient advocacy, as well as an Amazon Best-Selling Author and Public Speaker. Her book is titled – Patient Advocacy Matters: The Ultimate How-To Guide to Protect Your Health, Your Rights, Your Life and Your Loved Ones in Today’s Era of Modern Healthcare.

With a lifelong passion to keep the patient at the center of the nursing care model, Teri established NShore Patient Advocates in 2011, one of the first professional patient advocate organizations in Chicagoland, and now the largest. With critical care, cardiovascular and home-based nursing experience, Teri has collaborated with physicians and ancillary health care team members at some of the country’s premier hospitals. She believes in the benefits of improved communication between patients and providers and is committed to helping patients navigate acute illnesses and reducing medical error.

Teri has been awarded numerous times from local civic and business organizations for her dedication to social causes and her business success. She is a sought-after speaker who easily connects with her audience and explains complex medical conditions in simple terms.

The Facts of Life – Escalating Senior Health Care Needs

Eleven million people over the age of 65 are living alone today. One in five persons are now solo-agers with no adult children to provide the emotional, physical and logistical support needed. More seniors each day do not have family members to care for them. Living alone increases their risk of developing a myriad of long term illnesses. Seniors are also vulnerable to various forms of abuse and financial exploitation.

Older adults are often called “complex” patients—those with significant health and social needs. In a recent survey, funded by the Commonwealth Fund, 58 percent of patients with complex needs did not have a care coordinator helping them navigate the system, and 62 percent experienced stress about their ability to afford housing, utilities, or nutritious meals. Those unmet needs are part of the reason that 47 percent of the patients with complex needs visited the emergency department (ED) multiple times in the previous two years.*

These seniors generally use more health services and receive care from more and different health professionals than do people without chronic conditions. They also frequently rely on such social services as accessible transportation or home-delivered meals provided by community organizations. Given the complexity of their health problems, these seniors are more likely to have chronic, progressive illnesses or experience life-threatening complications. Palliative care and hospice services are often a consideration for these patients, further expanding the range of potential services that must be coordinated to optimize quality of life.

Older adults in the United States with complex needs often encounter a fragmented system that is ill-equipped to help them handle three, four, or even five chronic conditions simultaneously. Instead of a single patient receiving care that’s coordinated, he or she might have a general practitioner treating diabetes, an orthopedic specialist treating foot pain, and yet another health professional—an ear, nose, and throat (ENT) specialist—treating tinnitus. This sort of disorganized, unplanned care is all too common—as well as expensive and ineffective. Such care costs our health care system millions of dollars each year while often forcing patients to make multiple emergency room visits.

Many of the problems in serving patients with complex needs are due to barriers:

  • Financing of the U.S health system – the fee for service system
  • Lack of comprehensive, integrated systems and use of referrals to specialists
  • Lack of professional capacity to treat and manage behavioral and mental health
  • Acute complications of chronic ill patients becoming urgent and usurping resources
  • Care coordination requires attention to a broader set of services than is typically offered by physicians or hospitals*

*Health Affairs Journal, February 2017.   *Agency for Healthcare Research and Quality

Ageism in the Health Care Setting

As Patient Advocates, we advocate for all people with any kind of a medical need. Many of our clients have complex medical conditions, but not all do. We have clients of all ages, but a large number of our clients are the elderly; these are either Senior Orphans (who have no family or their family lives far away) or their family members don’t have the required time for their care needs (due to time constraints because of their own work and family demands). Whatever the family support, many of our clients find us, because of the overwhelm of complex medical matters, and/or after they have been dismissed or ineffectively/poorly treated in the modern health care setting. So they desperately look for support … and find us. And we listen!

We listen with open ears and hearts, and we hear a lot. One issue that we hear over and over again, loud and clear, and unmistakably is that age matters! Our elder clients feel discounted and dismissed as “old” by the modern health care system! This is a real phenomena. And it has a name – Ageism.

What is Ageism?

Definition

  • Prejudice or discrimination against people based on their age. This may be casual or systematic.
  • The term was first used in 1969 by Robert Neil Butler to describe discrimination against older adults, and it was patterned on sexism and racism.

Ageism is more widespread than we are aware of, but unlike racism or sexism, it has not been widely and/or publicly discussed and countered. Actually, it is almost normalized and accepted thru stereotypes. Not just in the USA, but globally. The World Health Organization says, for older people, ageism is an everyday challenge. Overlooked for employment, restricted from social services and stereotyped in the media, ageism marginalizes and excludes older people in their communities. And this has negative impacts on their health and well-being.  (https://www.who.int/ageing/ageism/en/)

But now, with a large number of adults over 60+ years being negatively impacted by ageism and the ramifications being more widespread and publicly noticeable (e.g. increasing and massive costs for social services, increased cost of Medicare and Medicaid, lack of suitable senior housing), our society is starting to recognize the negative results of ageism not just in the elderly population, but in the general population (where caring for an growing elder population is starting to show economic, medical, and emotionally tolls on the family care takers). Considering that the older population is outgrowing the younger population in the near future, this issue is finally finding concerted interest and research amongst the different actors involved (individuals, medical providers, legislators, and more).

For the purpose of this blog post, and dedicated to our elderly clients, who have provided us with valuable first hand insights, and who are vulnerable to this discrimination, we will focus on ageism in the health care setting, with the purpose of raising awareness of this issue.

Stereotypes

Here are just a few common stereotypes that have been accepted as truths about the elderly, and which oftentimes subconsciously impact the way the elderly see themselves and how medical providers see and treat their elderly patients in today’s health care system :

  • Aging is depressing
  • Aging makes you forgetful
  • Aging gives you dementia
  • Aging prevents you from learning new things
  • Aging makes you slower
  • Aging makes your body hurt all the time
  • Aging leads to loneliness
  • Aging makes you unproductive
  • Aging makes you needy

All of these stereotypes might seem innocuous enough to you. After all, these are just part of aging, right? But are they?

The System

It is not news that older people, on average, decline in some of their physical and mental functions, get sick more often, have more medical conditions, take more medications, and are more likely to end up in the hospital. We see this regularly amongst our clients.

And while it is normal that as we age our health becomes more complex with a general trend towards declining capacity, this does not mean that all elderly people experience aging in the same way and that there is a universal approach to their care. Far from it!

We see 90 year old seniors, who are still actively engaged in life, participating in book clubs, gardening, cooking, walking every day, etc. Well, we read about centennials participating in “races” in the news! And we see 70 year olds, who can barely walk anymore, live with Parkinson, Dementia, Alzheimers, the list goes on. Too many combinations exists to list them all. You get the idea. So it should be clear, that there is no such one thing as “the” elderly patient. The elderly don’t reach expected “milestones” like our children do when they grow up, by which we can measure their development. They are individual persons with very individual circumstances and individual experiences. And as such, their care demands a personalized approach.

For acute care, a more standardized immediate care model may work. And our health care system is good at that. But for the management of the often long-term conditions that our elderly patients are faced with, the current system is not well equipped.

The current system is largely symptom-centered, meaning that depending on the symptom, the patient is given a “simple” diagnosis that complies with a standard protocol of treatment, many times either a prescription medication to manage the symptom, and/or the patient is being send to a specialist for further care; and also there this approach of a standard protocol of symptom management may be applied.

Doctor – Elderly Patient relationship

Our own clients have lamented to us, how they have gone to the doctor for knee pain, and after an exam in which the doctor found nothing of concern, they were dismissed with the idea, that their knee is just old. They were prescribed pain medication to help with the pain, and told that’s all that can be done. After several more appointments for the same concern, with the dosage of pain medication being increased, and physical therapy added, but still in pain, the patient came to us. We listened to our client concerns, we took her medical history, we looked at her current living circumstance, what physical demands and challenges may have impacted her knee, and we trusted her self-assessment of experiencing real pain and that something is wrong with her knee. We advocated for more diagnostic tests. It turned out the knee wasn’t “just old”, there actually had been a hairline fracture, that now was healing, but improperly. The client ended up with knee surgery, and is doing very well today. The ageism at play here is clear: dismissing an elderly patient’s concern as a normal part of aging. Instead, the fact, that only one knee hurt, should have raised curiosity and concern, considering both knees are the same age. In a younger person, this would have raised a flag and would have been investigated more thoroughly.

Or our client, whose husband found her seriously confused and hallucinating after she had been taking a couple of antibiotics for a respiratory infection. This experience was at first dismissed as increased symptoms of her Parkinson and/or Dementia, although in her daily life, she only shows minor symptoms of these. Once she stopped taking the antibiotics, though, her hallucinations disappeared and her confusion has become rare and mild again. But our client felt awful about herself: misunderstood, embarrassed, old and failing. At her most vulnerable, she was doubly “injured” by ageism: dismissed as old, diagnosed as Parkinson and Dementia. While in this situation the doctor could not have done much medically, other than potentially discontinue or switch the medication, she could have looked at her patient more holistically, not just as a diagnosis of Parkinson and Dementia. And the doctor could have emotionally supported her patient through this experience, identifying this as a side effect to a medication, rather than an expression of our client’s old age.

In both of the above examples, a more person-centered vs the symptom-centered approach would have provided a more successful outcome.

Fragmented Care

Considering the multiple health conditions of the average elderly, it is easy to see how an elderly patient quickly ends up with many different care providers. Unfortunately, due to time constraints and the fact, that providers do not share the same locations or even networks, these various providers more often than not lack coordination of and communication about their joint patients’ care. This creates a fragmented care setting, in which a lot of critical information can get missed, which in turn can hinder the patient’s health improvements or even cause harm; such as when a medication is prescribed that may be contraindicative with another already prescribed medication or with a health diagnosis from a different provider.

Sure, one could argue, that the patient is responsible for communicating their own information, and that it true. But this is difficult to do, when you have to coordinate the information from your various providers, and you may not even have been given this information in print form, but rely solely on your own notes and/or memory. To add to that challenge, all too often the provider talks in medical terms that we are not familiar with, and there is rarely time to repeat and thoroughly explain what all this means, as the medical providers are rushed to finish the appointment to get to their next appointment.

It is thus easy to see, how this model is a form of ageism, as it clearly neglects to identify and address the reality of that category of elderly patients, with their particular complex health circumstances and needs. It is a very frustrating, and possibly dangerous, experience for an elderly person to try an manage themselves in this set up. And yes, it can be frustrating for the medical provider, too.

Final Words

Ageism is real. But with awareness of its existence and its forms and shapes, it can be countered. It won’t happen over night, but it needs to happen, and awareness for this needed change is already happing – we are happy to say, we have seen this awareness in some of our clients’ medical providers. They are out there!

Also, we don’t need to wait for the system to change. After all, the system is made up of various actors, of who we are part of. We have tools, too, that we can use to raise awareness and advocate for our selves. One is, not to buy into the stereotypes of ageism ourselves. Another is, to remember, that medical providers have been trained to focus on diagnosing and treating disease, so we, the patients or their advocates (family members or professional) need to be clear on the needs of the elder person’s goals to maintain their quality of life, and communicate these to our providers in order to receive personalized care. We are all on the same team!

Sources. Further reading.

Our dear clients

https://www.who.int/ageing/ageism/en/

https://www.who.int/ageing/health-systems/icope/icope-consultation/ICOPE-Global-Consultation-Background-Paper-1.pdf?ua=1

https://www.nia.nih.gov/health/healthcare-perceptions-about-older-patients

Not Just Old

In our culture, youth is worshipped. Aging means decline, cognitive and physical decline, something we don’t like. Something that is a source of frustration to us younger ones, like when we find ourselves in line behind such an elder at the grocery. They take so long to put their items on the belt, they take so long to dig for their coupons that they want to use, they take so long to dig out their money or credit card, then they have to figure out how to put the card the right way into the card reader, then they are so slow to put the card back into their wallet; all the while our clock is ticking, and our impatience and frustration is increasing because we still have so many “real and important” things to do. We are doing, and they are past their prime. This is just one example of how we are  seemingly “negatively impacted” by our elders. I’m sure you know many more such situations, so I spare telling more examples.

We are more likely to imagine colorful histories into people of different color, race, culture, etc, than we imagine into people of old age.  So we are quick to be impatient and frustrated with our frail elders, rather than imagine their lives when they were young, and respect their age and state of ability. This might actually be doing more harm than good to our collective culture. But I’m not going into this topic today.

Today, I’m curious – What else are they, other than old?

Odyssey

Last week, after a morning of educational lessons for our team, Teri treated all of us to a lunch cruise on the “Odyssey”! Sweet, isn’t it?! Waiting downtown Chicago by the river to go onto the “Odyssey”, we were happy and excited, already enjoying our treat before we even took our first bite of a delicious meal while watching the beautiful architecture of Chicago passing by us. Did I mention, the weather was perfect, too! Oh yes, it was a glorious day! I looked around and saw this group of four women next to us, waiting for the boat like we did. One of them was an elderly lady sitting in a wheelchair. As Patient Advocates, we always see the elderly, as a matter of fact, we are drawn to them; they are special to us, and we know their struggles.

This lady was petit and a bit frail, white hair, friendly face, dressed in a pretty long sleeved bloused and pants, curiously looking around her. With her were three women, at least one probably being her daughter. They clearly were enjoying their time also, engaging with each other in happy chatter and smiling. We made eye contact and smiled at each other. And as it happens on a beautiful day in Chicago, by the river no less, the smile turned into a “Hello, what a gorgeous day to go on a cruise” … and unbeknownst to us at this point, we met a woman who is one of the last of her generation; with a life journey so unique and heavy, and which will soon be only be told in history books, movies/documentaries, and museums.

The Birthday Girl

Two of the three younger ladies, were indeed daughters, the third was one of the daughter’s partner. They shared, that their mother celebrated her 99th birthday that day!! And for the past few years, they have always taken their mother on a boat cruise, because she loves boats. So here they were again, going on yet another boat cruise, together! The mom was smiling. Then, the daughters, who had detected my German accent, shared with me that their mother was German and encouraged me to speak German with her. I loved to follow their invitation. In a short conversation, the mom told me in perfect German that she was born in Berlin in 1921; moved to England, when she was young; was a nurse in England during the war; and moved to America, to Chicago, in 1945. All along she smiled, this beautiful white haired petit old lady, making me feel delighted in our connection to Germany. My team mates were also delighted to meet this fellow nurse, and there was this instant connection that you share with someone who shares your passion for being in service of others.

When the time came to board the boat, we let the birthday girl and her guests go ahead of us as it befits the celebration. And yes, it slowed us down getting on board. But did it? It felt so right and sweet. Once aboard, we parted with smiles and wishes for a great time; the birthday group settled at their table and we at ours.

Towards the end of the cruise, I caught up with the birthday group again. I felt the urge to say “Happy Birthday” one more time and send them off with well wishes.  After all, they had been so nice and I felt this connection with them. And then there was this one question that had intrigued my curiosity for about the last hour or so, when it had started to dawn on me, that there was more to the birthday girl’s story than the pieces of information I had gathered earlier. So I asked the daughters: “Is your mother Jewish?” The daughters said “Yes” and went on to generously and kindly share a story of their mother that humbled me, all of us, deeply. The story they told uncovered a life journey, a history of their mother that is far different from the frail person in the wheelchair that meets the eye of the casual passerby.

Her Story

Their mother was born and raised in Berlin, as she had shared with me already. After Kristallnacht, their mother and her young siblings were put on a Kindertransport (organized rescue effort) to England. Almost all of their mother’s family and extended family, who remained in Germany, perished in the Holocaust, except for her father, and a couple more relatives. Her father survived because he was an electrician, and his skill made him valuable in the concentration camp. Their mother became a nurse in England, where she nurtured the wounded and helped save lives. During most of those years in England, she had no contact, no information about her family left behind in Germany. When the war was over, she was fortunate to be able to be reunited with her father and remaining surviving family members. They immigrated to the United States, to Chicago. Here her father pursued and succeeded in his career as an electrician. The family remained tight knit, supporting one another in the years to come.

As I listened to the story, silently, I saw this frail person emerge as a strong survivor. She wasn’t just frail and soft spoken with white hair and a beautiful smile, she had endured and persevered horrific experiences, losses and grief; and without a doubt still carries that burden in her; and she lived to have and raise a family of her own, and find some peace again. That is what we witnessed at the river front – the love and joy between the mother and her daughters, the tender care-taking of the daughters towards their mother. We knew nothing of the horrific loss and grief, and tremendous strength this frail elderly lady had to suffer when we met her here, at the river front, on her 99th birthday, smiling, looking pretty, with her daughters by her side! Who would see this “life journey” just by looking at her, this elderly lady in a wheelchair? Who would imagine this history? What a precious and humbling gift to us to have met her and learned her history!

And how intriguing the fact that our boat was named “Odyssey”, and this elderly lady’s life has been an Odyssey; a life’s journey that was filled with obstacles, tribulations and trials, persevering in finding a way to arrive home again. Maybe this chance meeting was meant to happen, so we could use this gift of her story as a means to raise awareness that our seniors are not just old, but have lived lives that their old frail bodies and impaired cognitive abilities don’t reflect. And to meet them with curiosity and respect for their life story we don’t know. After all, we are Advocates!

Another Story

Now, this story is very unique … to say the least, and with the utmost respect. And most likely, you will not come across many elderly, if any, having lived through this dark history much longer. You are more likely to come across a situation like the following, which one of our Advocates witnessed.

Where an elderly couple is in a retail store, both dressed very nicely, carrying themselves nicely, the gentleman being quite dapper in a suit and bow tie. Then all of a sudden, the elder gentleman starts to yell out loud profanities, and throwing his arms around him, while the wife stands by quietly. Everybody is staring at him and his wife in shock and with judgment. And then the wife desperately cries out: “This is not my husband. This is not the man I married. This is what’s left from what dementia has stolen from me”. When our Advocate reached out to the wife in support, she learned, that the “mad” husband used to be a successful lawyer, that he was always gentle and treated everyone fairly. But then dementia set in and slowly stole his cultured personality form him, and her husband from her.

Yes, dementia can do this! Not everybody knows of this relationship between dementia and behavior, so when we witness an elderly person behaving like the dapper gentlemen did, or even just half way out of control,  we all too often come to the wrong conclusion – that they are rude and disrespectful seniors. And stereotypes are being formed.

So please, when you are out and about next time, and you see an elderly person moving slowly or behaving oddly, don’t just see a person of old age, who is past their prime, but try to imagine their history, who they are other than old, who they may have been when they were young.

And stay tuned. In the next couple of blogs, we will explore the issue of age a bit more.

ICOPA CONFERENCE 2019

On another note we at NShore Patient Advocates would like to share some of our latest news with you… The Patient Advocacy Symposium is back but bigger, better, and brighter than ever before! It has evolved into the International Conference on Patient Advocacy (ICOPA), and will be held right here in Northfield, IL on October 3rd-5th, 2019! We hope you will join us! Please see below for a link with more information: https://icopaconference.com

The Sandwich Generation – an Overview

Who They Are

You probably have heard the term “Sandwich Generation”; maybe you are a part of this group. If you aren’t a part of this group, you may be curious about who they are. The term “Sandwich Generation” was originally coined by social worker Dorothy Miller in 1981. She was describing women in their 30’s to 40’s who at the same time were primary caregivers to their young children and aging parents “sandwiched” between the two just like a slice of cheese on a sandwich. As times and culture changed, so has the Sandwich Generation – women started having children later, seniors now are living to older ages, children are growing up needing continued care; thus, today’s “Sandwich Generation” is made up largely of women predominantly between 40-65 years old, and men are actively involved in the caregiving too.

https://www.huffpost.com/entry/baby-boomers-caregivers_b_5733782

Statistics

Nearly half (47%) of adults in their 40’s and 50’s have a parent age 65 or older and are either raising a young child or financially supporting a grown child (age 18 or older). And about one-in-seven middle-aged adults (15%) is providing financial support to both an aging parent and a child.

On average, adults in the Sandwich Generation are spending approximately $10,000 and 1,350 hours on their parents and children combined per year. Typically, children require more money and “capital-intensive” care, while aging adults require more time and labor-intensive care.

Pierret, C. R. The sandwich generation: women caring for parents and children

Becoming part of the Sandwich Generation can put a huge financial burden on families. On average, 48% of adults are providing some sort of financial support to their grown children, while 27% are their primary support. Additionally, 25% are financially supporting their parents as well.

Parker, K., & Patten, E. The Sandwich Generation rising financial burdens for middle-aged Americans

Some of the adults living in this sandwiched generation face financial problems regularly, having to support three generations at one time: their parents, their immediate family (self and spouse) and children.

Parker, K., & Patten, E. The Sandwich Generation rising financial burdens for middle-aged Americans

Challenges

Taking care of an aging parent while still raising or supporting one’s own children presents certain challenges to the Sandwich Caregiver that are not faced by other adults. Needless to say, every situation is different depending on the medical condition and needs of the parent, on the age of the children (are they still in school or college or starting a first job, etc), the health condition of the children (considering the chronic health conditions impacting our children in numbers not seen before), the financial resources of the care recipient, the financial resources of the caregiver, marital status of caregiver, support network of caregiver, and many more. But some experiences, responsibilities, and challenges are uniquely shared by those wedged in caregiving between their children and parents.

Two of the most challenging of these unique circumstances are,

Time

Sandwich Generation adults mostly share their time between their children and their parents, leaving them with less time overall than a caregiver responsible for only either parents or children. This, more often than not, makes the Sandwich Caregiver feel rushed in executing their responsibilities and they may find themselves not even having the time to do all that is necessary on any given day for either their parents or their children, or both. Time for oneself can very quickly become an afterthought, an elusive luxury, although, to ensure the caregiver’s own health, taking time for oneself is paramount.

The lack of time can not only cause a tremendous amount of stress on the caregiver, and impact their own health, it can also lead to potentially dangerous care situations. If rushed for time, medications may be forgotten, or given at incorrect times, or in wrong doses; diapers (adult as well as babies) may not get changed in a timely fashion and cause rashes; and very commonly, emotional needs of parents or children may not be met and lead to depression; and more.

Finances 

The Sandwich Caregiver may find themselves financially supporting not only their children, underage or adult, but their own parents as well. This can take a financial toll on their own finances, present and future; and it most certainly will be very stressful if they have an average income or less.

Their parents may not have enough assets of their own to cover their financial needs, especially if their health or medical conditions require costly medications or treatments. While Medicare, Medicaid, and other insurance coverages do exist, they may not cover all expenses in full or at all; and/or their parents may not have planned properly for their future financial needs. So, now the Sandwich Caregiver may find themselves in the situation to either support their parents financially, or, what is the alternative? I want to take the opportunity here, to encourage you to do early financial planning for your retirement. This is extremely important.

The Sandwich Caregiver is also still financially responsible for your children – clothing, schooling, activities, savings for college they all add up. If their child has a special circumstance, like a disability or a chronic health condition, they may already incur higher expenses than other families.

The Sandwich Caregiver could also still be financially supporting an adult child. Their child may go to college and rely on their financial contribution; or their child may have started their first job, and their first income is not sufficient enough to pay for all their expenses yet.

If there is just enough money, or worse, not enough money to go around and cover all the different needs, the Sandwich Caregiver will have to set priorities. Most likely it won’t be easy but rather stressful weighing the needs of their parents versus their own children. There is no right or wrong answer on how to do this other than not to touch their own retirement investments if possible! If you do, there may be tax penalties or other ramifications as a result. The Sandwich Caregiver will need these funds for themselves in the future. Generally speaking, determining the best choice on how to allocate finances will depend on particular circumstances, emotional relationships, imminent needs, etc. If they haven’t done any research as of yet, they may find that there are resources they have not considered, scholarships or loans for their students; a local college, so their students can live at home; their parents may have served in the military and they may be eligible for veterans’ benefits; their parents could live with them, or the Sandwich Caregiver could move in with their parents; etc.

In Summary

By no means is the above a comprehensive overview. As I said before, each situation is unique. The above is meant to give a general idea of the shared challenges of the Sandwich Caregiver, create awareness, and encourage the reader to plan ahead of time if they are not part of this group yet but may be in the future.

Sources

https://www.huffpost.com/entry/baby-boomers-caregivers_b_5733782

Parker, K., & Patten, E. (2013). Pew Research Center. The Sandwich Generation rising financial burdens for middle-aged Americans

Pierret, C. R. (2006, September). Monthly Labor Review. The sandwich generation: women caring for parents and children

Illinois Medicaid – Slow to Pay

Medicaid Enrollment Numbers

The Illinois Department of Healthcare and Family Services maintains a running update of total enrollment numbers. In July 2018, 606,670 Illinois residents were covered under expanded Medicaid. After the eligibility guidelines were expanded, enrollment under Medicaid expansion grew quickly in the early years. Enrollment is lower in 2018 than it was in 2016 (In July 2016, Medicaid expansion enrollment stood at about 644,000 people).

Far more Illinois residents have enrolled in expanded Medicaid than the state expected. That means the state is receiving more federal Medicaid funding than projected. Also, it means Illinois has to pay more than projected. The state is paying 6 percent of the cost to cover the newly-eligible population in 2018, and that will grow to 10 percent in 2020 and future years.

Managed Care Plans

Illinois has been slower than many other states in moving beneficiaries to managed care plans. As a result, the state did pass a law in 2011 that required expanding managed care to at least half the state’s Medicaid beneficiaries by Jan. 1, 2015. In 2016, nearly 61 percent of Illinois Medicaid enrollees were covered under Medicaid managed care plans.

Nursing Homes

In June 2014, then-Governor Pat Quinn signed a Medicaid reform bill. The law restored adult dental care and podiatry services, aligns Illinois law with federal law to provide Medicaid coverage to children who have been without private insurance for three months, streamlines hospital and nursing-home reimbursement, and more.

In 2018, A lawsuit was filed in the U.S. District Court for the Northern District of Illinois, where five groups that jointly operate more than 100 skilled nursing facilities across the state said Illinois’ reimbursement rates and methodologies violated certain requirements under the Medicaid Act. Nursing homes across the country are struggling to pay landlords, employees and providers due to low Medicaid and Medicare reimbursement rates and depressed occupancy levels. However, the problem is especially acute in Illinois, where reimbursements are not only low, but also arrive with months of delays.

Some nursing facilities have waited up to nine months to receive their Medicaid payments, which they rely on to cover everything from salaries, rent and food to laundry and medical equipment and services.

Unpaid Bills

An impasse between Illinois’ Republican governor and Democrats who control the legislature left the state without a complete budget for an unprecedented two fiscal years. Lawmakers enacted a fiscal 2018 budget in July, and the state still has a $9.1 billion backlog of unpaid bills to vendors and service providers.

While the number of residents covered under Medicaid has vastly increased, as well as the number of services offered, payment for those covered has been significantly slower. The effects of that can be felt throughout the healthcare system. Hospitals and nursing homes are only a few that are affected. One can only hope that changes in legislation are made to counteract or improve on this. The current situation, as it exists, is only hurting Seniors and Adults w/Disabilities. It can be very hard to place residents safely when facilities don’t get paid.

Sources: Reuters; https://www.healthinsurance.org/illinois-medicaid/; Chicago Tribune

Active Advocates and the Power of a Proxy

For this week’s take on our active advocates, we follow NShore Chief Advocate and CEO, Teri Dreher

If you know Teri, you know she’s in this business because she cares. That’s why when a client with no or little family around is in trouble, she’s happy to show up on their behalf. So was the case last week when one of her longest standing clients needed help. Here’s how she tells it:

I recently got a phone call as I was settling into my chair for the evening, PJ’s in place and zero emails in my inbox. The call came from the ER. My client had been found unconscious in her assisted living facility. They told me her blood sugar level was at 34 (potential for brain damage). Luckily I live close by and was able to get there within ten minutes. Right away I approached the staff working on her and was able to hand them a medical profile. Medical profiles are an extremely important aspect of patient advocacy. They describe a person’s past medical history, hospitalizations, living situation, medication list, and more.

On the way to the hospital, my poor client endured quite the ambulance ride. Due to the winter weather, her heart rate and temperature had dropped to dangerously low levels. She was stabilized and admitted to closely monitor her vital signs, heart rhythm and blood sugar. I called her sister, told her the whole story and relayed medical and personal information. She was so relieved and thankful for my serving as her “proxy” and secondary POA. She lives over 1000 miles away and would not have been able to get there for days. Not having family around during a health crisis can be terrifying. I was happy to be there as her advocate and to offer emotional support as someone who knows her well.

The power of a proxy

The next day we arranged for friends to help transport our client home. As they say, it takes a village. I texted them to make sure discharge orders were correct and that my client was feeling alright.  Having a nurse advocate on hand for emergencies is always a good idea, especially for those with family members who are widely separated or even estranged.

Her sister is not alone in needing a service for our dear client. More and more seniors are aging alone and disabled without family close by. In this case, our client was not even a senior but an adult with multiple disabilities and brittle diabetes that has almost resulted in death 5 times in the past year. I’m truly happy to be her advocate and hope we can keep working together for years to come.

 

For more info on NShore CEO, Teri Dreher, click here.