This week, I participated in the second phase of “Transforming the Healthcare of Women with Disabilities” to discuss the implementation and outcomes of the four pilot projects designed in Phase I to improve gynecological, mammography and breast care for women with disabilities.  The Cerebral Palsy Foundation (CPF), through its Women’s Health Initiative, is leading a multi-part project: survey of women and health care providers regarding obstetrical, gynecological, and breast care for women with disabilities; review and analysis of survey data by representative stakeholders at a first workshop; and finally, review of the pilot research results and design of prospective patient-centered research at a second workshop. I was honored to be among such an accomplished group of women leaders in health and disability to provide input to the effective implementation and  marketing of the pilot projects at four leading hospitals. We spent two days engaging with national policy leaders and physicians, practioners, and patient advocates from the leading pilot partners: The Weinberg Family Cerebral Palsy Center at Columbia University Medical Center, The Complex Care Service at Harvard’s Boston Children’s Hospital, The Rehabilitation Institute of Chicago and Northwestern University and The Center for Cerebral Palsy at the UCLA Medical Center.

Key to the discussion was looking at the process of the implementation and execution of each pilot.  We identified clinical process improvements and ongoing gaps with practical, lived solutions such as ensuring medical offices use universal-design equipment including adjustable exam tables and captioning video marketing materials. We discussed social media and partner communication channels for marketing the pilot outcomes to key audiences such as providers, physicians, and rehabilitation professionals as best-practices for optimizing healthcare for women with disabilities. I provided the example of being a healthy, active woman with a disability who skis Black Diamonds and how having quality healthcare enables me to have an “athletic” lifestyle–in body, mind and spirit. Being healthy allows me and others to live the dream as we choose–on and off the slopes!  Thank you to Richard Ellenson, the staff at CPF and the terrific women (and men) who I was privileged to work with to inform and execute this healthcare transformation project for women with cerebral palsy. The project was supported through funding from the Patient -Centered Outcomes Research Institute (PCORI) and 100 Women in Hedge Funds.  

Changing the Face of Beauty is launching #facemybeauty to show the #adworld the power, confidence and beauty that comes in different colors, shapes and abilities! This is a terrific ad campaign to see people for their ability and potential. While being fabulous and beautiful!  CTFOB  empowers people living with disabilities by advocating for inclusive imagery, changing perceptions and igniting futures in the media and advertising industries to change the face of beautiful. Join the campaign, share your story and change the beautiful ability marketing conversation. #facemybeauty, #adworld, #beautifulwomenwithdisabilitiesrock, #stephaniethomas, #Cur8able, #pushgirls, #angelarockwood, #katiedriscoll

It was very exciting to be a speaker at the Women’s Wellness Celebration sponsored by ARDX,  a healthcare management and technology services and solutions provider that improves the quality, efficiency and effectiveness of healthcare for America’s most vulnerable populations. The 2016 Women’s Wellness Celebration (WWC), Mental Health Matters: Opening Eyes. Opening Minds., held October 11th at the Ted Constant Convocation Center in Norfolk, VA, brought together more than 300 women (and a few men) from non-profit organizations, hospitals and providers, local public health experts, and national policy and program leaders to bring awareness and incite action to mental health and well-being issues faced by adolescent girls and women.

My presentation, “Ability Matters: Harnessing the Power of Potential and self-Actualization for Women and Young Girls,”  showcased best practice integrated care models and innovations that improve women and young girl’s emotional and physical well-being.  I highlighted the importance of integrated care models that treat the mind, body and spirit to address the whole person and the different circumstances that impact our mental well-being. The Women and Health Initiative (W&HI) at the Harvard T. H. Chan School of Public Health, the Women’s Health Research Institute at Northwestern University, and the Cerebral Palsy Foundation represent female-driven solutions to strengthen health systems to better address women’s unique healthcare needs. 

A key point was imparting the importance of health advocacy and bringing their voice to the strategic direction of parity and mental health legislation. Your voice matters! I stressed the importance to be well-informed on our health and well-being, be self-aware, share our experiences and be proactive. Let decision-makers know the importance of equitable, accessible and affordable healthcare that improves our ability to be healthy, active and successful women.

The highlight was talking about my ability to ski Black Diamonds at Vail and how it is my mental and physical well-being that allows me to take on these daring runs.  I challenged the group of women to take on their own “Black Diamonds” in life and exceed their potential, to be at their absolute personal best mentally and physically, while defying expectations.  The session with everyone gasping, yet invigorated, while watching my ski video to see exactly how it’s done!

Thank you to Angela Reddix, Lateefah Hughes and the entire ARDX Women’s Wellness Celebration production team for the opportunity to make a difference for women’s mental well-being.

Under the leadership of Dr. Carmelo Tornatore, M.D, Chair of Neurology, Georgetown University Medical Center has launched an innovative pilot medical home project to transform multiple sclerosis care.

The medical home model is not exactly new to neurology. For years, neurologists say, they have had to manage comorbidities of patients with chronic conditions such as epilepsy and multiple sclerosis, coordinating preventive services and acute and end-of-life care — and communicating all aspects of patient regimens between hospitals and nursing homes or other specialists and primary care physicians.

But when Neurology Today reached out to determine how many neurologists had embraced the medical care model — in which each player on the treatment team would be paid separately, but the primary care physicians would receive reimbursement so they’d have more time to invest in face-to-face visits, telephone and e-mail consultations with patients, and discussions with others who are involved in a patient’s care — few identified their practices as medical homes.

One neurology practice hopes to change that. Carmelo Tornatore, MD, chair of the department of neurology at Georgetown University Medical Center, has secured private funding to launch the first multiple sclerosis-focused patient-centered medical home within Georgetown’s Multiple Sclerosis Center, which he directs.

The medical home is being planned as a clinical trial: 500 of the center’s 3,000 MS patients will be recruited into the three-year study. They will be followed for a year under the standard care model, before being transitioned into the patient-centered specialty practice model.  We are going to compare patient-reported as well as physician-reported outcomes from before the transition and after. Will we have fewer hospitalizations and fewer emergency department visits? Will we see better quality of life measures? We suspect that we will,” Dr. Tornatore said. “The whole idea is to take a more proactive approach to caring for patients, rather than being reactive.”

The practice will identify patients with higher needs — those with more active disease, who may have more hospitalizations or more emergency department visits — and do a “gap analysis.”

“Maybe they need more social services. Maybe their disease-modifying agent is incorrect, maybe they need physical therapy. Maybe they are underinsured and we need to look at their insurance,” said Dr. Tornatore. “We will focus on identifying those at-risk patients and take a multidisciplinary approach to intervention.”

Days will be set aside for patient education — time that should become available because clinicians can do much more with telemedicine and other methods rather than being subjected to what Dr. Tornatore calls the “tyranny of the office visit.”

“Our schedules shouldn’t be jam-packed because we’re taking care of things in other ways, so the patients who need to come in truly are acute,” he said.

Dr. Tornatore believes that this concept is the value-based proposition that Medicare and third-party payers are looking for. “Medicare is interested in moving more away from fee-for- service and toward outcomes,” he said.

“This is a way for neurologists to start moving in that direction and to start quantifying the tremendous value of what we bring to patients. They are asking for these alternative payment models [APMs] by 2019 or 2020. Couldn’t one of those APMs be a neurology specialty home, where we get paid as a lump sum for this group of patients, and we have quality measures that we have to meet?”

The trial, he added, will also look at the economics of such a plan. “We want to understand the level of reimbursement that is needed to take care of patients with a chronic disease like multiple sclerosis in a patient-centered approach.”

Dr. Tornatore suggests that the patient-centered specialty home could be a model for multiple sclerosis centers and other neurology practices throughout the country. “You could have an epilepsy-centered specialty home, one for Parkinson’s, one for Alzheimer’s — the concept is the same. For people with chronic neurologic disorders, we are their primary care provider.”

http://journals.lww.com/neurotodayonline/Fulltext/2016/09220/Bringing_the_Patient_Centered_Specialty_Practice.5.aspx

Anne Rader hasn’t let disability slow her down. In fact, she’s helped empower women and others living with disabilities to be economically stable and self-sufficient through her extensive work in American policy and healthcare.

The day Anne Rader turned 14, her mother turned off the television and said to her, “Anne, you need a skill.”

She got a B in her first typing class, and her mother forced her to retake the class until she got an A. Once she got an A, her mother marched her down to the United Way to interview for a job typing up press cards.

As she was leaving the meeting, Anne overheard the hiring manager say he was uncertain about hiring her. Her mother convinced him to give Anne two weeks as a trial. That two weeks turned into four years and that hiring manager became a lifelong mentor.

But it hasn’t always been this easy. As a woman living with a disability—Anne was born with Cerebral Palsy—she finds it challenging to get people to see beyond her disability to the extensive experience she’s garnered in the fields of healthcare and public policy in the United States.

“It’s about ability,” she says, explaining her career success. “We can do anything we want to do.”

She credits her mother Diane for imparting on her, determination and a can-do attitude. A PhD in Education, Diane consistently told her daughter: “Anne, you can do anything you want to do. You’re always going to have to work harder, but you can do anything you want.”

It’s an attitude that’s stuck with Anne throughout her career navigating the American healthcare system, advocating for people with disabilities, and speaking publicly on healthcare policy and organizational impact.

While the American healthcare industry can be challenging, challenge isn’t something Anne is afraid of.

People have different perspectives of what challenge is. As many times as I want to give up, I can’t, because it’s just not in me,” she says. “People will tell you all your life that you can’t do things, but you have to surpass people’s expectations, because they’re generally too low.

One of seven siblings, Anne grew up in Wisconsin and earned a Bachelor of Arts degree in Political Science from Marquette University in Milwaukee. Upon graduation, she moved to Washington D.C. “as a starry-eyed 20-something straight out of college, thinking [she] could change the world.” She hasn’t looked back since.

Anne started her career at Susan Davis International, a boutique public relations firm, where she assisted with the design and implementation of public policy and outreach strategies on healthcare issues, engaging legislative, industry, and community leaders in the development and implementation of Federal health policies. She quickly became passionate about improving healthcare, especially those most vulnerable and at-risk. As a woman living with a disability, Anne knew that quality, affordable healthcare was key to anyone’s personal and professional success.

After four years with that firm, Anne had the privilege of working as a Special Advisor to the Secretary of State for the U.S. Department of Labor, Elizabeth Dole. Ms. Dole became more than just a boss and a mentor—she strongly influenced Anne’s decision to follow her passion and make a difference for others, particularly for women with disabilities.

Anne went on to become part of the healthcare team at Cassidy & Associates, a leading public affairs firm in Washington, DC where she was instrumental in helping hospitals expand their ability to transform healthcare and provide state-of-the art care for diverse populations. It was then Anne realized she could make a real difference in the healthcare industry.

With healthcare and public policy experience under her belt, Anne recognized that she needed a specific skill set in order to advance her career further. To help forge her way deeper into the world of policy and healthcare, she entered the Master in Public Administration (MPA) Program at the John F. Kennedy School of Government at Harvard University.

Straight out of grad school, Anne started working at Fannie Mae, and spent seven years there working on housing and community development initiatives to promote affordable housing for underserved communities. She focused passionately on empowering women, people with disabilities, and senior citizens to achieve homeownership and economic self-sufficiency, something Anne says is a major factor for the success of the American economy.

Among many other career accolades, like working as Assistant Vice President for a New York City non-profit management consulting firm, and as an Associate with Booz Allen Hamilton, Anne also had a seat as a board member of the National Council on Disability. She was appointed to the Council by the White House in 2003 and served as Chair of the Healthcare Team. Today, as part of the Council, she was responsible for leading a study on healthcare for people with disabilities.

Because Anne was born with what she describes as mild cerebral palsy and later, unrelated, acquired MS, she spent a great deal of time in hospitals as a patient. “As an adult, you get to see how [the hospitals] operate; you see how important the work they do is.” Anne says her disability was a major factor in inspiring her interest in healthcare.

To this day, her own experiences make her a better and more credible advocate for the causes she champions. “Currently, I’m working with the Women’s Health Initiative as part of the Cerebral Palsy Foundation (CPF),” she says. This collaborative network of nationally renowned medical institutions is working alongside CPF to identify the barriers to better healthcare for women with disabilities and begin to develop and implement new approaches.

In her work advocating for the health needs of at-risk and vulnerable populations, Anne has had the opportunity to focus on a number of issues including access to quality care, public housing, and resources.

To me, technology and education are great equalizers,” Anne says. And while access tends to be limited to those with financial means, she’s committed to addressing this issue.

Anne herself has benefited greatly from the advancement of adaptive devices and technology. So much so that she now skis black diamond trails at Vail Mountain in Colorado—something she certainly wasn’t able to do as a child.

Despite her proven track record, Anne says she’s still often seen as a “nice woman” or an “inspirational woman” with a disability who is working and earning a living. But that’s not what she wants to be seen as. “I hope that in each of my positions I’ve had the opportunity to show people that a woman with disabilities can be successful, that she can do whatever she wants and have a huge impact while doing that. I want people to look at me and think Anne is a tough cookie. She makes things happen.”

– by Meghan Jeffery

Women of Influence is an international inspirational resource for professional women aspiring to the C-suite.This quarterly publication is a blueprint for success covering the issues relevant to us throughout our careers—whether we’re just starting out, or we’re experienced executives. For entrepreneurs, or those pursuing dominance in the public sector, professional services, health, NGOs and more, every issue offers actionable insights from ambitious, accomplished women across the country and around the world.

As we plan our summer getaways, many of us look for that thrill and adventure to do with family and friends. (After all, we need the photos for our annual Christmas cards!) And why are we drawn to adventure? It’s exciting, exhilarating, fun and gives a sense of accomplishment. Whether a vacation adventure or living day-to-day, we encounter obstacles, challenges, mountains and cliffs to conquer. They exist precisely to be overcome.  For some of us it’s Black Diamond ski runs, road biking, rock climbing and whitewater rafting!  For others, it’s beach volleyball, surfing, sailing and soaking up the rays.  Moliere may seem rather dated to be quoting but the guy knew a thing or two about music and life! You have to grab on, hang on, climb on, ski on, rock on, roll on, play on, design on, heal on, write on or market on…whatever you do to move through life. Believe in yourself, your awesome ability and the power of your potential.  Life is a challenge–sometimes exhilarating, often frustrating. For me, the steeper the mountain, whether on skis or in day-to-day life, the greater my glory.  And much better shared with friends, family and those I meet along the way. This summer, let’s take on and overcome whatever obstacle, challenge or adventure we encounter–by choice or happenstance, fun or not–to actualize our potential, empower ourselves and those around us and be our absolute best. Because…ability matters!

The Harvard Kennedy School Alumni Club hosted a breakfast this morning with Joanne Jenkins, the CEO of AARP, to hear her speak about her new platform for changing how we age and her new book by the same name, Disrupt Aging: A Bold New Path to Living Your Life at Every Age.

People over 50 account for more than $7.1 trillion in U.S. annual economic activity. By 2032, that is expected to rise to more than $13.5 trillion. Jo Ann Jenkins is sparking new conversations and solutions so more people can choose how they live and age. I appreciated Joanne’s insights on how AARP innovates with companies and communities to create new solutions that work for an inclusive society, with partners including MIT Age Lab, United Healthcare’s Optum Labs, Aging 2.0, and 1776.

Joanne  spoke about needing to change the conversation about aging. “We need to stop defying and denying age: we need to own it.” She believes we need to focus on three core areas—health, wealth, and self—to show people how to embrace opportunities and change the way society looks at getting older. She spoke about her own journey and others who are making their mark as disruptors to show how we can be active, healthy, and happy as we get older.

For me, aging is about independence–physical, financial and lifestyle. Joanne truly “gets” that people want to make their own decisions about aging–where, with whom, with our own resources and with purpose.  As an independent, active woman who happens to have disability, I appreciate Joanne’s platform and want to help change the conversation about aging through my own experiences and interactions with people.

As many know, I ski–some of the toughest runs on Vail Mountain.  I want be skiing well into and past retirement! To do so means being physical fit, financially sound, engaged with friends and colleagues, active in my community and, most of all, making a difference where Ability Matters!  I will use my experience as a woman with a disability to act on Joanne’s call to change the conversation about aging to show people how to “disrupt aging” and ski on to live an active, exciting and purposeful life!

Fashionistas of all abilities were on hand Monday evening at Sotheby’s Auction House on the Upper East Side of New York to celebrate the first annual Design for Disability Gala to raise funds for the Cerebral Palsy Foundation (CPF).

Thom Browne and Andrew Bolton provided their career advice and talent to the event with Browne serving as a mentor to the students throughout the 5-month competition and as head judge for the evening. His fellow judges included costume designer Ann Roth; psychologist, media commentator, Disability Rights Advocate and model Dr. Danielle Sheypuk; and Ms. Wheelchair America 2016 Dr. Alette Coble-Temple. Thirty-five fashion students presented designs to the judges and five were chosen to produce two outfits from their collection. Finalists each worked with two women with disabilities as their models to unveil their designs at the runway. The competition was inspired to recognize that with innovation and style women with disabilities can look as fashionable and beautiful as what we see in magazines and runway shows.

Anne at the Design for Disability Gala.

As a fashionista at heart, this was a terrific event to showcase that our ability to look and feel good does not depend on how well our body moves.  It’s about how well clothes are designed to fit our bodies to move. We all want to live healthy, happy and successful lives. For me that means eating well, looking well and dressing well.  I like looking fabulous!  The Design for Disability Gala celebrated how women with disabilities look absolutely fabulous with creative, innovative fashion design. The event gained terrific media coverage by Fashion Weekly, Fox5 News New York, Today.com and Racked.com.  Kudos to the aspiring designers at the Fashion Institute of Technology, Sotheby’s and Auctioneer C. Hugh Hildesley, the lovely models, CPF Executive Director Richard Ellenson and the entire multi-talented Production Team led by Will White for putting on a spectacular event!

The Cerebral Palsy Foundation’s Design for Disability Gala next Monday at Sotheby’s in New York City promises to be an exciting star-studded event!  The Design for Disability Gala is the culmination of a five-month competition with students at the Fashion Institute of Technology (FIT) to design clothing that will transform the fashion experience for women with disabilities. I’m excited to be joining friends and stars to celebrate the students at the Fashion Technology Institute for their innovation and creativity.  ‪This a great event to showcase that being a healthy, fashionable woman is a big part of our health and well-being…no matter what your ability!   #‎cerebralpalsyfoundation‬ ‪#‎fashiontechnologyinstitute‬ ‪#‎DesignforDisability‬‪ #‎Sothebys‬