Now is the time to recognize and honor family caregivers across the country. It is an opportunity to raise awareness of caregiving issues, educate communities and increase support for caregivers.

The burden of care is often placed on adult children or other family members, many of whom have full-time jobs and kids of their own. According to an Alliance for Caregiving and AARP Public Policy Institute survey, 40% of caregivers feel emotionally stressed, almost 20% say it caused financial problems, and about 20% feel physically strained. Unpaid-caregiver burnout among these “sandwich generation” individuals often impacts their performance and engagement at work.

Family caregivers comfort their elderly and/or ill companions, coordinate their care, help them bathe, clean their houses and shop for them. While many find the experience rewarding, it can also be frustrating and take a toll on their emotional and physical wellbeing. Over half of caregivers report elevated levels of depression and anxiety, worsened physical health and higher use of psychoactive medications.

These tips are a good reminder for caregivers and those who are close to caregivers:

• Seek support Ask family members for help and include them in caregiving decisions. See if your employer offers a program like Magellan’s Senior Caregiver Assistance, powered by DUOS, that combines human contact with technology that can give caregivers much-needed support and enable seniors to live full lives.
• Share the tasks When family or friends offer to lend a hand, be ready with specific ideas. Make a weekly list and share that list with others to help with shopping, housecleaning, etc.
• Take care of yourself Be sure to schedule and go to your medical checkups. Eat a healthy diet, exercise and get enough sleep.
• Make time for activities you enjoy Don’t neglect the things in your life that need attention. Read, listen to music, paint, play a game, etc.
• Plan for respite care Respite services provide someone who can stay with your family member while you get away for a few hours or days. Time off can help you manage your stress and be a better caretaker.

Visit our Behavioral Health Resources web page for free resources and expert advice to help our communities, client, members and providers.

Sources: CDC, Healthwise

This month marks several important milestones not only for disability advocacy nationally, but also for TMG by Magellan Health in Wisconsin.

On July 26, 1990, President George H.W. Bush signed the Americans with Disabilities Act (ADA) into law. This historic piece of civil rights legislation made it illegal to discriminate against someone because of a disability. The ADA has paved the way for people with disabilities to have access to the same opportunities that everyone else has.

This means that public transportation and public accommodations such as schools, restaurants, stores, clinics and theaters must accommodate people who use mobility aids, and must be accessible to those with audio or visual impairments or other types of physical disabilities. It means that children with an intellectual disability can receive a public education with their peers. And, it means that adults with disabilities can ask their employer for reasonable accommodations so that they can perform their job duties and remain active in the workforce. We know that a more inclusive world is a better world, and that’s why we celebrate the progress that’s happened over the nearly 30 years since the signing of the ADA.

We also celebrate Disability Pride in honor of the 40.7 million Americans[i] who have a disability and represent 12.8 percent of the U.S. population. They have valued roles in our communities as artists, advocates, entrepreneurs, athletes, co-workers, neighbors, and friends. Yet, not everyone looks beyond a person’s disability to recognize their ability and talents, and all too often people with disabilities can be invisible to society. That’s why Disability Pride parades and festivals are so important.

The first Disability Pride parades took place in Boston in the early 1990s. Although those initial parades stopped after the death of the lead organizer, Diana Viets, the city of Chicago held its very first Disability Pride Parade on July 18, 2004. Since then, other cities across the country – including New York, Philadelphia, Los Angeles, and, Madison, Wisconsin – have held their own Disability Pride events, with many happening during July to commemorate the signing of the ADA. The focus at these festive events is inclusion and fun, and, to quote Chicago’s Disability Pride webpage, “to promote the belief that disability is a natural and beautiful part of human diversity.” If you have the opportunity, it’s great to take part in one of these empowering and fun events as TMG by Magellan Health staff have done in Madison.

Finally, this month also marks the 10-year anniversary of Wisconsin’s IRIS program, and our partnership with the Wisconsin Department of Health Services and other stakeholders since the program began. On July 1, 2008, the state’s fully self-directed Medicaid long-term care waiver, called IRIS (Include, Respect, I Self-Direct), was created to give those who wanted more control and choice in long-term supports and services (LTSS) the chance to self-direct those services. Since then, the state has made the IRIS program available and we have steadily expanded our IRIS Consultant Agency and Self-Directed Personal Care Oversight Agency services to all 72 Wisconsin counties.

Wisconsin is regarded as a leader in self-directed services through the IRIS program. Recently, Applied Self-Direction and AARP published an informative report entitled, Taking it to the Next Level: Using Innovative Strategies to Expand Options for Self-Direction. The report highlights Wisconsin as one of the top four states for innovation in self-direction, along with Texas, Iowa and Florida. TMG is proud to be the original IRIS Consultant Agency and the only IRIS Self-Directed Personal Care Oversight Agency in Wisconsin, and we feel honored to support over 14,500 of the 17,000-plus people enrolled in the IRIS program.

For all these reasons – the anniversary of the ADA, Disability Pride events and the innovative IRIS program – July is indeed a month to celebrate progress in disability advocacy and policy!

[i] United States Census Bureau: American Fact Finder – Disability Characteristic 2016 American Community Survey

By Carol Sickler, Screen Liaison Supervisor, TMG by Magellan Health

April is National Donate Life Month, and in honor of this, we would like to share a story from Carol Sickler, a TMG by Magellan Health Screen Liaison Supervisor. Fourteen years ago, Carol gave a life-saving gift to her brother, and she’s proud to be a living organ donor. Here is Carol’s story.

On March 18, 2004, I donated my kidney to my brother Lee. He had been in kidney failure for a year due to Berger’s disease (also known as IgA nephropathy) and was on dialysis. Berger’s disease causes the kidneys to become inflamed, which can affect how the kidneys filter waste from the blood. Since only 50 percent of people on dialysis live beyond 5 years, Lee’s best bet for long-term survival was to find a new kidney. I wanted to give Lee a fighting chance.

Our dad had also been on dialysis due to what we believed was Berger’s disease (it was never confirmed because he had other health issues, too). Unfortunately, our father was not a candidate for a transplant, and passed away in 2002 at the age of 72. My brother Steve also has Berger’s disease, but fortunately he has not experienced kidney failure (not everyone with Berger’s does).

Lee and Carol Sickler

Since this disease is hereditary, you might be wondering why I decided to donate one of my kidneys – wasn’t I at risk of Berger’s disease, too? Thankfully for me, Berger’s is primarily a disease found in males. It also tends to show up by the time a person is 40, and I was 40 at the time. So, for me, the risk of developing Berger’s disease was relatively low.

When I first considered donating my kidney, there were so many questions that were going through my mind about both of our futures, and if this was the right choice for us. However, my decision was solidified when the doctors at UW Hospital in Madison told us I was a match for Lee. And not just a match, but an identical match, with all six antigens matching as if we were identical twins, even though Lee is seven years younger than me. The doctors were baffled by this and had never experienced anything like this before. For me, though, I knew then that it was part of my life’s path to move forward and give my kidney to my brother. So, fourteen years ago we hugged and went into surgery together, becoming connected in a way we had never before imagined.

Today, we are both fully recovered and doing well. I personally have no regrets, and no health issues or ill effects from the donation. What I do have is an amazing bond with my baby brother Lee – the depth of this bond is unexplainable, and it’s something I would gladly give my kidney for again if I had to. Because organ donations are treatments and not cures, the kidney donation didn’t cure Lee of Berger’s disease, but it has allowed him to live a fulfilling, healthier life off of dialysis. Also, this gift of life allowed him to have a daughter, Jazmyn Carol, for which our entire family is grateful.

For anyone who is interested in becoming a living donor, there are a lot of great resources at both the www.organdonor.gov and at the University of Wisconsin Living Kidney Donor page. One of the most important things to know is that as long as the donor is evaluated thoroughly and cleared for donation, they will most likely lead a normal life after the surgery. And should a health condition arise because of the donation, there is a priority system in place on the National Transplant Waiting List so that living donors move to the top of that list.

I’m grateful that I had the chance to give my kidney to my brother, and love sharing my story in hopes it will inspire others to give the gift of life.

In late January, Magellan held its second annual Magellan Open Vision Exchange (MOVE) conference in Scottsdale, Ariz. MOVE brings together a large cast of voices from the healthcare industry to discuss the future of healthcare for patients, plans and providers. Over two days, we heard from private industry experts, government leaders, as well as other subject matter experts and thought leaders both from inside and outside the healthcare industry.

The Future of Healthcare Beyond the Affordable Care Act

Obviously, the continuing debate over the future of healthcare and the Affordable Care Act were a central topic of the conversation at this year’s MOVE. A number of speakers talked about the impact of the Trump Administration’s efforts to repeal the Affordable Care Act. Former Utah Governor Michael Leavitt, who also served as the secretary of the Department of Health and Human Services, said that while he expects repeal and replace legislation will pass, significant parts will be deferred for three or four years. Brian Coyne, VP of federal affairs at Magellan Health, said that he feared gridlock over the next couple of years.

Managing Transformation in the Healthcare World

One of the key topics discussed at this year’s event was the immediate future of the healthcare industry. After a long period of explosive innovation, there was consensus that disruptive change will continue. Magellan Healthcare CEO Sam Srivastava posited that we are currently in a tech-bubble that is about to burst. The industry is waiting to see which of the early healthcare technology entrants will survive and how technology and healthcare will continue to interface with each other.
Leavitt spoke extensively of the need to manage transformation, especially in healthcare. Leavitt stressed that systematic healthcare change takes hold over three to four decade cycle, and he believes we are less than mid-way through the current transformation. Using an analogy of a cattle herd, Leavitt made the point that you can’t drive a herd too quickly, or you risk a stampede. You also can’t push the herd too slowly or it will meander. Applied to healthcare, the idea is simple but true: If we push change too quickly there will be chaos, but if we fail to adapt and change, we will stagnate. Allowing ourselves to be “lulled into inaction” is a recipe for disaster.

Value-Based Healthcare

A critical area of discussion was the expansion of value-based care. Speakers agreed that demand for value-based care is accelerating. Leavitt said he believed this was true regardless of the Trump Administration’s plans for healthcare. Billy Millwee, President and CEO of BM&A Public Policy, cited broad bipartisan support for the value-based model and agreed that it was here to stay.

Chet Burrell, president and CEO of CareFirst BlueCross BlueShield, spoke clearly on the approach that his company was taking: “We started and ended with common sense.” He went on to explain that they had built their model with the primary care physician at the center (PCP). The PCP knows the patient best and is therefore in the best position to make decisions regarding who to refer and to whom. By taking this approach, Burrell relayed, CareFirst was able to build a patient centered medical home model that improved care while reducing costs.

Despite the level of change being experienced throughout healthcare, a common theme was one of our industry being grounded in helping people get the high-quality care they need, affordably. This is the essence of why healthcare is our chosen industry and why we are driven to innovate.

An interesting takeaway was that across the conference and speakers, there was a clear common theme: while the ultimate structure of the pay-for-value transformation is uncertain, the movement will continue. Experimentation, promoted by both public and private payer initiatives, will drive innovation and change. Some will be better prepared than others to handle this paradigm shift.

“Every citizen has gifts. A strong community knows it needs everyone to give their gifts.”

– John McKnight, Asset Based Community Development (ABCD) Institute

In supporting people with disabilities in our communities, it is important to shift from using a lens shaded by needs and wear one focused on seeing people’s strengths, talents and assets. This new lens reflects the potential of each person and helps to move the conversation from one marked by:

• listing the services a person may need, to one identifying the contributions an individual can make,
• seeing a consumer as a user of services, to one recognizing a citizen who can access shared resources and have valued roles in their community, and
• viewing programs with limited resources, to one recognizing relationships and connections to one’s community with endless possibilities.

The 2016 conference for TASH, an international advocacy organization, provides a unique opportunity for people with disabilities, their family members, other advocates, and people who work in the disability field to come together and learn about strategies that meet the objective of this year’s conference to “reignite their passion for an inclusive world.” I led an interactive session that engaged participants in using tools to clear the path to inclusion, employment and community connections. Attendees learned how to use strength-based strategies to expand and translate their interests, gifts and talents into real connections and a better quality of life.

These strategies, when applied to community inclusion for people with disabilities, are based on an exploration of an individual’s gifts of hand, heart, head and human connection. Gifts of the hand are the things we know how to do. These are our skills, habits or rituals that we learn or naturally possess. Gifts of the heart include our passion or things we care enough about to give of our time and effort. Gifts of the head are the things we know or want to learn about, such as an interest in a local sports team or in a hobby. Gifts of human connections are the people we know and who know us – often called our social capital.

For decades, we have kept those who are different from us, including people with disabilities, separated from the community or segregated in spaces society thinks they feel more comfortable and can live in more safely. While approaches to school inclusion and community living strategies have tried to address this, these efforts have often been more focused on meeting the needs of professionals or systems, as opposed to the needs of people. Far too many people living in their communities are segregated from typical experiences and do not have access to opportunities they deserve as citizens. However, when we support people to create connections to others in their communities based on their natural gifts and assets, opportunities for real inclusion develop.

Uncertainty is the name of the game for many industries today, including healthcare. With rapidly emerging technologies, regulations and changing consumer demands, companies must manage differently in order to keep up. Jeff Dyer, innovation visionary and co-author of the highly acclaimed, The Innovator’s DNA and its follow-on publication, The Innovator’s DNA: Mastering the Five Skills of Disruptive Innovators highlighted the threat to many companies today – predicting that 50 percent of the S&P 500 will be replaced over the next 10 years.

Human-Centered Innovation

As consumer experiences across nearly every industry become more personalized, on-demand and targeted, he encouraged pushing our thinking beyond meeting functional needs by looking at social and emotional ones as well. By doing so, companies are able to identify unmet needs that can be catalysts for more useful solutions that ultimately win in the market.

The GE Adventure Series Scanner, an MRI scanner designed for children to make scanning a less frightening experience, was a prime example shared of human-centered innovation. While advanced in functional features, what was discovered through observing young patients getting a scan was that the former machine was intimidating – the designer learning that as many as 80 percent of pediatric patients had to be sedated in order to sit still long enough for the scan.  Witnessing this, a new approach was taken, ultimately applying human-centered design methods to redesign the experience as a series of “adventures” for children, delighting and no longer scaring its young users.

The Big Picture in Quality Care

While human-centered innovation can be applied product by product and interaction by interaction, we heard another thought-provoking point from the day’s presentations – that it’s really hard to detect poor quality care through one interaction. The path to a poor outcome most likely includes bouncing from doctor to doctor and breakdowns in coordination and communication between interactions. Often, the big picture reveals the flaws.

The reality today is that many people still get prescriptions from multiple, independent physicians, and many hospital admissions come with undiagnosed behavioral health concerns. The healthcare system has an immense opportunity to come together around the whole patient and to better identify needs at a population level to deliver on value-based care that leads to healthier outcomes.

Physician Collaboration

Our physician panel sparked further ideas in how to collaborate with PCP’s, nurses and other care workers to better meet patients’ needs. Often at the front lines of the patient experience, creativity in finding unidentified needs was discussed as pivotal to creating an effective healthcare experience. While concepts of self-directed, consumer-focused healthcare and increasing consumer participation in healthcare decisions have become popular, the role of physicians is also being transformed. Their responsibility is increasingly to supplement and put into perspective available information, manage expectations, and instill confidence. The discussion thus encouraged leveraging physicians as “natural, trained problems solvers”, bringing them into the ideation for a better patient experience, and empowering them with action-oriented data and decision support along the way.

We thank all of our leaders, clients and partners for joining us in a memorable and energizing event. We look forward to our next gathering in January 2017.