By Suzanne OvelJune 7, 2018
Although he and his family had lived with his severe autism his whole life, when he turned 19 Jacob Sheffield began to regress. He developed severe anxiety issues. He became easily agitated. He broke into loud outbursts.
"We as a family were hitting a brick wall and very desperate for any help we could get," said his mom, Lisa Sheffield. She learned that his behavior wasn't uncommon in autistic people at that age, when special needs services slowed as they neared the age of 21. TRICARE referred Jacob outside of the military care system to appointments with only 10-minute evaluations, offering new medications to try but little other support in how to help him.
"We decided then that our best hope was at Madigan and we were correct," said Sheffield. "The first appointment was about two hours, asking questions and getting some answers on how best to give Jacob any possible medical care."
Jacob got assigned to Madigan Army Medical Center's Faith Clinic, a special clinic just for adult patients with developmental disabilities. In fact, it is the only one of its kind in all of the Department of Defense. The clinic grew out of Madigan's Pediatrics Clinic in 2005 when they recognized the need to provide continued specialized care for their developmentally delayed patients who age out of pediatric care.
"These people still have special needs … and they still have their parents who need to look out for them because they have the disabilities, and these parents need support to continue," said Judy Scott, a registered nurse and the Faith Clinic's nurse navigator.
The clinic cares for about 200 patients with conditions ranging from cerebral palsy to intellectual disabilities, Down's Syndrome to autism, and chromosomal abnormalities to other developmentally delayed conditions.
"The patients are comfortable with coming here; they have established a pattern of this is a safe place and this is good," said Scott, whose patients range in age from 18 to 61. "The approach that is used with them is more gentle, and it's so thoughtfully understanding and compassionate."
This more gentle approach means going the extra steps to put patients at ease.
"You need to meet them where they are," said Lori Carney, a nurse practitioner and the Faith Clinic's provider. Sometimes this translates to Carney literally meeting patients in the waiting room until they are comfortable enough to go to her office. Other times it's developing the skills to better understand patients' often nonverbal communication during appointments.
It's this depth of care that made Jacob feel at home at the Faith Clinic.
"Jacob has always liked going to the doctor at Madigan, only because he is so welcomed," said Sheffield.
Carney even works with her patients and their comfort levels to determine how to modify her, and some of the specialists', exams to meet their conditions. This may look like "examining" mom or dad first by peering into their ears or listening to their heartbeats before examining the patients. Or it could look like inviting a gynecology nurse practitioner to the clinic once a month to allow patients to be examined near staff they already know and who are more familiar with how to best communicate with them.
In fact, close collaboration with specialty care services (pediatric and otherwise) offers Faith Clinic patients more comprehensive care. Because Faith Clinic patients are often referred to the clinic from Madigan pediatrics or pediatric specialty care clinics, there is also an organic continuity of care -- of truly knowing the patient's history -- that arises.
"That's why being embedded in here is really helpful because I can continue to talk to pediatrics, I can talk to adolescents if they've had that patient, (and) the specialists that have known them for years," said Carney.
Her patients also get additional care thanks to the clinic's standard one-hour appointment slots.
"I think that's the biggest difference to have that time with them and to be able to get to know the family, to get to know what's going on, because it's not just the child, it's the family," said Carney. This allows her the freedom to at times see her patients alone to increase their independence, and then educate the parents again when they join the appointments later.
Parents can also be essential to giving staff a more complete picture of their children's health and overall wellbeing. Outside of the clinic, parents are usually the caregivers for their adult children with developmental delays, and find themselves facing challenges such as acquiring vehicles with chairlifts, needing to modify their homes, or just balancing the needs of their adult developmentally delayed children with the rest of their family.
The Faith Clinic staff recognizes that their patients' parents need support too, whether that's resources or emotional support or help planning for their families' future needs.
"These are heroic people as far as I'm concerned because they everyday are dealing with situations that the rest of us cannot imagine. They are courageous; they are so giving of themselves," said Scott.
Scott often connects families with outside resources and supports; Carney even set up a collaborative relationship with Goodwill to allow her patients to volunteer there and provide them with additional job skills, social skills and friendships with other patients.
The staff's deep commitment to their patients across the board certainly makes an impact on their lives, including Jacob's.
"Without Mrs. Carney and the exemplary care, compassion and patience we receive at the Faith Clinic, I would have to doubt that we would have made it this far. The nurses and staff of the clinic deserve great praise too, because they only offer the best care and patience with Jacob," said Sheffield.
The Faith Clinic staff hopes that other military treatment facilities find inspiration in their clinic to replicate their services. Scott praised both the founders of the clinic for their insight and the leadership who continue to support its unique mission.
"It really plays a vital role for these families," she said. "The disabilities don't go away just because somebody turns 21."