For nearly two years. Audrey Gerkin has provided One Sky with a whirlwind of spirited engagement with the issues as the agency’s Family Advocacy and Education Liaison. Now, as the direct support crisis continues to bloom with no end in sight, the very issue that Gerkin has been so vehement about resolving has come home to affect her own life and ripple through the agency.
Unable to find staff to fill out the support hours needed for her 16-year old daughter, Gerkin will be leaving her position with One Sky in January to care for her daughter, Lexi. She is currently in tenth grade at the Monarch School and was diagnosed at age 12 with Cornelia de Lange Syndrome and a rare epilepsy syndrome known as PCDH 19.
Caring for Lexi has always been a family affair for Audrey and her husband, Rob; and Lexi’s sisters, 14-year-old Bella and 10-year old Shayla. But this past year was a difficult and demanding one with Lexi being hospitalized four times in an eight-month span with a trip to the ER thrown in for good measure.
Gerkin describes a visual of her whole family holding Lexi above their heads to keep her out of the water, but the demands this past year have worn the family down. Without adequate direct support, Gerkin says “the whole family struggles. We were drowning in Lexi’s care. The goal was to keep our family together, but we were facing institutionalization for Lexi.”
It began last April when Lexi was having seizures that required hospitalization which was further complicated by a Stage IV wound and life-threatening pneumonia. A month later, her primary in-home pediatric nurse left the position with the family. For several months, Gerkin and her husband got a crash course in more complex nursing and provided a level of medical care for Lexi that Gerkin only half-jokingly says might have earned her an honorary nursing degree.
While she is much improved, Lexi’s health is still not quite stable as her sodium levels are fluctuating, a condition that presents its own dangers. For Gerkin, a successful outcome for Lexi has been the only option under consideration. “I’ve learned far, far more from Lexi than she’s learned from me,” she says. “She teaches patience and tolerance and how to fight for people in the right way. You learn to fight when you’re desperate. When you have to succeed, there’s no other choice.”
So Gerkin is leaving One Sky for good reason though not without admitting a sense of frustration that there is more she could contribute to the agency and to the service system as a whole. She had already made the hard decision to close down the family’s organic CSA farming business in 2013 because of the care-giving demands.
The hurdles and struggles confronting the care and support of loved ones are not isolated events affecting only the individual and a concerned family. Caregiving, no matter how personal and intimate it might seem, affects the entire community and spreads in ways that are often too subtle, too deep in shadow, to get much attention.
Though One Sky is a human services organization expected to have caregivers in its employ, it is far from being the only employer of caregivers. According to a September 2017 report from the Northeast Business Group on Health (NEBGH): “In the U.S. today, one in six employees is a caregiver for a relative or friend, and spends on average more than 20 hours a week providing some kind of care.”
What it means is that any issue concerning caregivers – from worry and family conversations to coordinating appointments and arranging support – can have an impact on every business employing them. The NEBGH benchmark survey further noted that “82-percent of employers agreed or strongly agreed that over the next five years, caregiving would become an increasingly important issue for their company.” So if politics demands cold numbers then caregiving, in some way, can have a distracting effect on the bottom line of every business with at least six employees.
For Gerkin, the bottom line is direct support and the number one concern of everyone working in the service system should be to address the lack of it. But there are those who see the crisis in the abstract simply because it is not a problem they confront each day as part of their lives. “There are people who don’t feel the urgency of the workforce shortage because they don’t live it,” she says. “Providing support is not just giving support and stability for that individual, but for everybody. It makes the whole community better.”
Having walked a long, momentous trail trimmed with victories and defeats as well as an earful of broken promises, Gerkin has words of advice for any advocate in the field: “Stick to the facts, no opinions. Just tell your story. We need to work together to find solutions to these issues. You can’t lash out and be negative or people won’t help you. It goes back to that need to succeed."
Incorporated in 1983, One Sky Community Services has been dedicated to providing a comprehensive array of services, supports and programs to individuals and families with intellectual and developmental disabilities, as well as acquired brain disorders. A private 5013C nonprofit organization, it is the designated area agency serving the following communities: Brentwood, Deerfield, East Kingston, Epping, Exeter, Fremont, Greenland, Hampton, Hampton, Falls, Kensington, Kingston, New Castle, Newfields, Newington, Newmarket, North Hampton, Northwood, Nottingham, Portsmouth, Raymond, Rye, Seabrook, South Hampton and Stratham. One Sky works with nearly 1,200 individuals and families on a yearly basis.