Fighting for What’s Right
Mar 04, 2016 04:09PM
By Sheri Hatfield
Evolving Paradigm Gives Health Advocates A New Role
The advocating stories are often similar, such as a mother of a child with special needs, or a daughter whose father has serious health issues. They start where most people start, with traditional resources such as medical doctors, teachers, administrators and insurance companies. That is where the path may diverge, however. When their gut instinct tells them there is more that can or should be done, they begin researching options to find the solutions that work for their family.
Debbie Morgan, owner of Integrated Health Services based in Sherman, was working in the health promotion and corporate wellness field and knew there was a need for integrative and holistic health awareness. That need came into sharp focus when her father was diagnosed with stage-four lung cancer at age 59. Since at the time of her father’s diagnosis there were no integrative health advocates to turn to, she took matters into her own hands and began researching not only conventional treatments, but natural or complementary alternative options as well.
“When you get a diagnosis like this—or any other really—you go along with what the traditional doctors are telling you because you’re a part of the herd,” Morgan said regarding her experiences with traditional medicine.
After the loss of her father, she wanted to increase her knowledge of integrative health and pursued a master’s degree in integrative health and healing. Morgan calls the experience and education transformative. She moved on to training in emotional freedom technique (EFT), craniosacral therapy and somatic emotional release. After realizing she wanted to better understand thoughts and how they contribute to healing, Morgan attended a 12-month certificate program in positive psychology.
Today, she helps others by teaching them to be their own advocate when dealing with illess, understanding integrative health options while taking control of their overall health and best interests. “I don’t want to be part of the herd. I want to help people beyond their dis-ease. I want to inspire health and happiness,” says Morgan.
The notion that traditional medicine is offering only a part of the solution is a major theme for health, wellness and education advocates. It takes considerable resources of time, energy and even finances to find the right solution for each individual.
Mimi Lagana, a certified life coach based in Greenwich, began her life as a health and education advocate when her child was diagnosed on the autism spectrum. She began by starting a MeetUp group for parents and children on the spectrum. In those conversations, she began to wonder why so many of the children were on pharmaceuticals, and if there were alternate options. She knew she didn’t want to drug her child and began researching autism, its causes and treatment options with a goal of keeping her son off of pharmaceutical drugs and helping him to prepare for life ahead.
“We’re often looking for one magic bullet that is going to help; in reality, everyone’s bodies are different, so we need to try different things,” Lagana said. She tried a mixture of applied behavior analysis therapy, music and sound therapy, diet, homeopathy and naturopathic medicine. “Everything we tried had a positive impact, but there wasn’t that one silver bullet. So we kept trying.”
Her son is currently 17-years old, and mainstreamed in a school with 2,600 students. When she started her journey, she didn’t have the luxury of the Internet and social media; she explains that she had to self-educate “like never before”. As they tried alternate health treatments through diet and other naturopathic and homeopathic remedies, Lagana saw a need to get more involved in the education aspect. She began to advocate for her child there as well.
While she was working to find the best integrative wellness and education options available for her child, Lagana went back to school to get her master’s degree in psychology. Like Morgan, she says it is important for people to advocate for their own or their loved one’s health and well-being. She has found that typical medical doctors don’t always provide alternative options; it is up to the individual to seek them out. She also says that typical doctors aren’t always preventative, but instead treat the problem once it becomes a problem.
For most advocates, the typical journey starts with a diagnosis or problem of some kind, be it a physical health or neurological issue, behavioral issue identified at home or school or a learning disability or special need discovered upon entering the school system. Upon the diagnosis or discovery, most turn to their inner circle for advice, reaching out to trusted confidants for advice on where to turn next. Then the journey leads to consideration of traditional treatment options or alternative considerations. And, in the case of children with special needs, a meeting with school officials to help ensure the best education.
Debbie Giblin started her journey in a similar way. Her husband had passed away, her child was acting out at home, and she needed advice on what to do. As a single mom she looked for outside points of view from adults who could help her find a solution. “You don’t know what you don’t know until you need to know it,” Giblin stated. “It’s scary as a parent.”
In navigating her child’s unique concerns, Giblin sought out advice from medical doctors, naturopaths, school psychologists and counselors; she still spent a considerable amount of time researching options on her own. She learned about education plans, what resources the schools currently provided, what they were required to provide, what insurance paid for and what it did not cover. She learned what worked for her and her family mostly through trial and error and dogged determination.
Along the way she met Occupational Therapist Amy Philosoph, and the two struck up a friendship. Philosoph has three children of her own—two with special needs—and plenty of experience advocating for their health and education needs.
Philosoph started her career as an occupational therapist in New York City hospitals and at an early childhood development center in Harlem working in the Birth-to-Three program. She then moved to Virginia, where she practiced with one of the first women to open a practice in sensory integration. Unbeknownst to her, she would need all of this experience, and more, to help her own children. “I knew the system and still couldn’t get help,” said Philosoph. “I assumed it was my problem because it was my child.”
The truth is, it’s not. Philosoph spent untold time and financial resources to advocate for the right schools for her children. She learned exactly what the school district was required to provide; she also learned that most pharmaceutical companies provide coupons for medications for people who can’t afford them. She found psychologists, naturopaths and psychiatrists who would take insurance and state-funded programs that could help families find relief.
All the while she thought about why it was so complicated and wished someone could come to her home to help her. So when Giblin approached her one morning about an idea of creating a resource to help parents with special needs children, the idea fit what she’d been pondering. The two created Resource Road, a referral agency that specializes in connecting families to local special needs resources.
“We help people by saying here are the rocks that no one is going to tell you about, here’s how to turn them over, and here’s the order for turning them,” Giblin explained. “It’s about knowing what questions to ask, when and where to get help and solutions.”
One of the places where families with special needs children can turn in Fairfield County is Susan Jacoby, a psychiatric nurse practitioner and owner of Neuropsychology Consultants. She specializes in and advocates for parents and siblings of special needs children. When her special needs child was born 20 years ago, Jacoby discovered that there was no support for families going through her experiences. She realized she could put her psychiatric nursing skills to use making a living by providing a much-needed resource. “Families with special needs children have a unique and complex dynamic,” Jacoby said. “They are often balancing illusion with reality, the child they dreamed of and the child they have. That can be daunting and has affects on the typical children in the house.”
The dream of seeing her two children playing together was what spurred her to create Devon’s Place, an all-abilities access playground in Norwalk. She wanted a place where her typical child could play with her special needs child, and she could play with them both. She raised $750,000 to fund Devon’s Place in Norwalk, designed the playground, and acted as site manager during the building process. Now, Devon’s Place is an 85 percent accessible playground for all children.
Jacoby now advocates for the families of children with special needs and speaks about the experience of parenting a child with special needs around the area. She notes that support is woefully unavailable and needs attention. She has joined a parent’s advocacy group that meets with state officials to get additional support.
All agree that an advocate can help in getting the best care and education for yourself or a family member. If your family is faced with a daunting diagnosis or chronic illness situation to manage, find an advocate, or a series of advocates, to help you navigate the waters. While insurance may not pay for their services, they may be able to help save your family money, and find benefits, services and alternate treatments based on their experiences and expertise.
Sheri Hatfield is a freelance writer and co-founder of an emerging children’s museum in Shelton. Connect with her at [email protected].
Tips for Advocating for Yourself or a Loved One
Self-education is key.
Internet research, support groups, websites and social media pages are valuable resources for asking questions and investigating your options.
Don’t be afraid to try different things.
What worked for one person may not work for another; it is all part of putting together the puzzle. Discovering what doesn’t work can be just as valuable as discovering what does.
It’s OK to say no to what is recommended by an expert.
We’re raised to listen to highly-trained experts and do what we’re told. In the new healthcare paradigm, you might have to say no to one expert and yes to another form of care. Listen to your gut and trust your own path.
Explore the limits of institutions’ policies.
Find out what insurance covers, what schools are required to cover, and more. When doing so, do not accept the first answer given. Keep asking questions.
Integrative Health Advocacy LLC
Neuropsychology Consultants LLC
Susan Jacoby, APRN, BC