Family Caregiver of the Year Award Nominee: Kara Guerriero
Family Caregiver of the Year Award Nominee: Kara Guerriero
Nominated by: Laura Galbreath
Tell us about the nominee's caregiving story.
Kara’s older brother, Raphael (“Rafe”), experienced his first major mental illness event when she was in elementary school. He was diagnosed with bipolar disorder. Since completing graduate school and for the better part of two decades, Kara has been tirelessly caring and advocating for her brother. Rafe’s illness has changed over the ensuing years, including some relatively healthy periods and some extremely difficult times, including a current diagnosis of schizoaffective disorder, total blindness, and a sleep disorder. During these years, Kara has continued to share her expertise, experience, time, and love in an effort to affect change in the healthcare system and ensure that her brother receives the care he needs to achieve his full potential.
Rafe has a serious and persistent mental illness, which has been exacerbated by his loss of vision. His daily and ongoing needs are complex and unique. Following an incident, while he was hospitalized at a reputable psychiatric hospital, in which he blinded himself, he spent many months at a second, larger mental hospital with insufficient psychiatric support. This hospital was unable to provide comprehensive therapeutic and transitional care required for Rafe to progress in his recovery. Kara was able to find an out-of-network, private mental health facility in Connecticut, Silver Hill Hospital, which agreed to meet Rafe and ultimately accepted him into their program.
Kara has been a tireless caregiver for Rafe, unabashedly using all of her resources to help get him the best care available and making sure there is wrap-around care to address his very complicated needs. She also cares for more personal things, like buying him a guitar for Christmas (he loves playing!) and making sure he can get his hair and nails cut, too. There is nothing too big or too small when it comes to Kara caring for Rafe and his overall well-being.
How does the nominee complement his or her caregiving responsibilities with their own needs and interests?
Kara has made a lifelong commitment to learn, advocate, and work for Rafe and the broader behavioral health community. After earning a Bachelor of Arts degree from Wheaton College in Illinois, Kara went on to earn a Masters Degree in Public Health from the Boston University School of Public Health. She has continued to attend conferences, review current literature, and visit mental health organizations across the country to maintain current knowledge of mental health issues, programs, and research. Kara has worked at the National Alliance on Mental Illness (NAMI) in Boston and at the national office in Washington, DC, and at the National Council for Behavioral Health in Washington, DC.
She has recently started her own business, INCITE Consulting Solutions, to expand her sphere of influence in improving behavioral health care in public and private agencies, community centers, and state and federal agencies. Her sister, Erin, is working for her and together they are trying to make better behavioral healthcare a reality for the community organizations that seek out Kara to help their centers run even better.
Tell us about the nominee's problem-solving techniques.
Kara is an unparalleled problem-solver and an expert on the behavioral healthcare system. She plays a major role in managing all aspects of Rafe’s care. She has taken it upon herself to become knowledgeable regarding behavioral health issues and concerns, such as medications, types of treatment, mental health facilities, legal and ethical issues, health insurance, and social security.
The support she provides includes:
- Keeping records of Rafe’s mental health care, including medications and their effects, hospitalizations, meetings with healthcare providers, and Rafe’s overall health status.
- Developing communication networks with Rafe’s healthcare providers.
- Hiring a private healthcare manager to provide a consistent and independent voice as Rafe’s care (and site of care) changes.
- Hiring a private yoga instructor to help treat Rafe’s chronic neck and back pain.
- Managing his personal and medical finances, including managing interactions with Medicare and Medicaid.
- Developing contacts with Social Security to ensure appropriate adherence to their regulations.
- Sharing her personal time with Rafe, calling on the phone, visiting with him, taking him shopping and to dinner, and helping in the long-anticipated purchase of a new guitar. When he has been in need of emergency care, she has come to RI to provide support and assistance, and to help ensure that he receives appropriate care.
- Offering understanding and encouragement, fresh perspectives and knowledge regarding his illness.
- Providing financial support to help cover expenses not provided for by health insurance.
- Volunteering to be and then acting as Rafe’s primary Power of Attorney (POA) for Healthcare and co-POA for Finances.
Kara continues to contact colleagues and pursue leads in an effort to obtain information regarding legal concerns, support/training services for blindness, and future housing options.
The foundation for Kara’s support of Rafe is innovation. Her innovative approach to supporting Rafe includes:
- Managing Rafe’s journey through the fragmented delivery system with the development of professional networks and personal expertise. Over the last 20 years, Kara has developed an extensive national network of colleagues whom she can call for information, opinions, references, and support. Her professional network is multi-disciplinary in scope, including but not limited to, medical and behavioral healthcare providers (physicians and psychiatrists, social workers, administrators, pharmacists, advocates, consumers), politicians, lawyers, and journalists. She also has extensive knowledge of mental illness and the behavioral healthcare system. She understands the big picture of how the mental health system and these specialties interact (or don’t) to get the best care for Rafe.
- Hiring private individuals to support Rafe’s needs. Faced with complex ongoing health care needs, it became evident that the community mental health system was not equipped to manage Rafe’s complicated case. Kara hired a private health care manager (PHCM) for Rafe who is credentialed as a licensed clinical social worker. The PHCM acts as a complement to his traditional care team and is responsible for overseeing many of the major facets of Rafe’s medical and mental health needs. Having a PHCM working for Rafe has improved his care tremendously because she stays with him, from hospital to hospital and facility to facility providing much needed professional consistency in his care. She is one of the few non-family constants in his life. Additionally, while Kara and Rafe’s mother has extensive knowledge of Rafe and his history, some providers dismiss their insight/expertise because they are not “medical professionals.” This care manager, a medical professional, has helped to bridge this gap as the go-between for the family.
How does the nominee use online resources or community services?
Over the years, Kara has used online and community resources to tell Rafe’s story, promote the importance of changing the behavioral healthcare system, and challenge the behavioral healthcare system to provide better and more comprehensive care--targeting the impacts of insufficient psychiatric care as well as financial ramifications. She advocates for the personal, individual care of people with intensive psychiatric needs like Rafe. Last spring she attended three “Listening Meetings” hosted by the state of Rhode Island (Rafe’s home state). At these meetings, Rebecca Boss, Director of the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH) visited local communities to listen to people’s concerns and questions. Kara provided her with three summaries, describing Rafe’s journey through the mental health system and the tragic outcomes of that journey. Although she described the shortcomings, and disastrous outcomes of his care, she also offered her perspective on how and why the system can change.
Kara used all of her resources--personal, online, and community--to seek out a care facility for Rafe and continues to facilitate his ongoing care coordination. While Rafe has been at Silver Hill, Kara has instituted and facilitates weekly (now bi-weekly) conference calls. During these calls, the team reviews his current status, determines what needs to be done, and assigns responsibility to ensure his continued recovery. Although not everyone attends every meeting, these calls include providers from Silver Hill (psychiatrist, social worker, transitional care director, nurse, an accountant), Behavioral Health, Developmental Disabilities, and Hospitals (BHDDH), insurance provider (Neighborhood Health Plan and Optum (Behavioral Health Care vendors)), the private healthcare manager, and the RI Community Mental Health Center (East Bay Mental Health).
Kara facilitates weekly conference calls with family members to provide an update on the provider conference calls, and to elicit and respond to concerns, observations, and suggestions of family members regarding all aspects of Rafe’s care. This has resulted in creating a more cohesive, informed and engaged family to support Rafe. It has also encouraged her family to become much more familiar with the available online resources and community services available (and not available) to help Rafe.
How does the nominee remain involved in his or her community (including online)?
Kara never gives up. She is relentless and driven in her pursuit to support Rafe and his care needs. In doing so, she stays involved in the community and even motivates others to work harder to get Rafe the care he needs. Everyone deserves to have a “Kara” advocating and working for them.
Even in times of crisis, Kara is professionally polished and systematically focuses on the most critical, salient, persistent problems. She provides smooth leadership direction for high-level meetings that allows everyone the opportunity to participate but keeps the focus on reality and the need for solutions. She will keep asking the critical and important questions about Rafe’s care and needs until they are addressed and refuses to be swayed or subverted.
She is assertive and well-prepared for meetings and discussions regarding her brother’s condition and needs. She is always professional, clearly states what the problems are, and offers solutions, where appropriate. She is always willing and available to help. Kara is continuously energetic and positive, keeping the focus on reality, problems, and solutions. She is also the consummate team-builder as she has provided the impetus for high-level administrators and providers, from two states, to join the bi-weekly conference calls, and be in communication with one another, as needed. This includes the Medical Director of Neighborhood Health Plan of RI, the Medical Director of Silver Hill Hospital, Rafe’s psychiatrist at Silver Hill Hospital, the Associate Director of Mental Health Services at the RI Department of Behavioral Healthcare, Developmental Disabilities, and Hospitals (BHDDH), and the manager for the 24-hour aide coverage. She is articulate on what the problems are and how these organizations are helping or hindering progress. These administrators and providers have been given a bird’s eye view of the incredible complexities involved in the treatment of people with severe and persistent mental illnesses, as well as the frustrations and barriers inherent in obtaining appropriate, timely, and legally mandated care. They are all now personally invested.
Within her local community, Kara has continued to be an advocate and personally involved. After moving to Charlotte, NC in 2016 Kara made contact with the local NAMI (National Alliance on Mental Illness) chapter to see what if any shortfalls they might have that she could help with. Two areas she identified were that they needed help growing their membership and educational outreach. This led to her expanding the training programs for NAMI family to the family initiative as well as rectifying in Mental Health First Aid. These efforts culminated in her recent membership on their Board of Directors.
Kara’s community is also her family; here are a few testimonies from them:
Judith Sweeney (Rafe’s Mother)
Since Kara completed college and entered the field of mental health, she has been a constant source of knowledge, assistance, and emotional support. She has always been well aware of Rafe’s changing mental health status, as well as his medications and their respective usefulness. Whenever Rafe has had serious medical situations, such as suicide attempts, she returned to RI to help me cope with the medical and emotional consequences. She has always maintained contact, on the phone and/or in person with his doctors and other health care providers, and has been an integral part of conversations regarding his medical care. Several years ago, Kara offered to take on the enormous task of dealing with Rafe’s financial concerns. This was especially helpful in regard to insurance companies, Medicare, Medicaid, and Social Security. Her willingness to do this has allowed me the time and energy to focus on other aspects of Rafe’s care. She has been my go-to person when I’m frustrated, concerned, and discouraged, and also understands and shares in my gratitude and joy in the small victories that are won from time to time. She recognizes that, although he will never recover completely from the trauma of mental illness and blindness, with the proper care he can certainly live a more meaningful life than he’s living now. She is determined to see that he is given that opportunity. She has never given up on Rafe and remains optimistic that, with the proper care, he can live a productive, happy life.
Erin Testimonial (Rafe’s younger sister; Kara’s older sister)
I have known that Rafe has been sick for a very long time; I remember when I was in junior high and he came home from college. He was so sick it scared me. I know that his being sick is one of the primary reasons Kara was drawn to completing a Masters degree and working in the mental/behavioral healthcare domain. I also believe, without a shadow of a doubt, that Rafe would not be here were it not for Kara’s (and my mom’s) constant care, attention, support, and advocate. I just retired from the Marine Corps and until recently have not been able to visit or support my brother as much as I would have liked. I have done what I could and Kara has always made me feel appreciated for what I was able to do. Over a year ago, she instituted the family weekly call. I have made those calls a priority, even when I was on trips outside of the country. A silver lining to these calls is that we, as a family, are closer than we have ever been before; everyone makes these calls a priority. She also started the Family Fund which helps to pay for care or things Rafe needs that are not otherwise covered; I have been able to contribute to this and I know that, in a small way, I’ve been able to help Rafe when I wasn’t physically available to do so. Kara’s drive and determination to help Rafe has motivated me and allowed me to do my job as a Marine knowing that he has an amazing tenacious caregiver and advocate. As soon as I retired from the Marine Corps in late 2018, one of the first things that I did was spend Thanksgiving with my brother at Silver Hill. I was recently married and this was our first Thanksgiving together as a family but my husband was supportive and recognized how important it was to me because the rest of my family had been the ones missing these types of events. Now it was my turn and I was glad to be able to do it. I am also inspired by the work Kara does and recently started working for her; she is not afraid to take experts from all and every facet of life and build them into a team. She recognizes people’s strengths; she’s not afraid to be innovative and fresh in her approach to complicated problems. Kara is just one of those people that puts things so plainly and convincingly that you can’t help yourself and you want to help. She is the best caregiver and advocate a person could ever have. I’m proud of her and so glad she’s my sister; and especially glad she’s Rafe’s sister.
Meet our Caregiver of the Year Award Nominees.
INCITE Consulting Solutions provides health care organizations, particularly those in behavioral health, with strategic planning services aimed primarily at supporting executive level leadership. Their work helps organizations run and operate at peak performance and peak potential so patients and families receive optimal care. Learn more at www.inciteconsultingsolutions.com
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