When people sustain a catastrophic injury, they are often living moment to moment. They’re not yet thinking about how life will change once they return home. Even though the hope of returning home is what gets many patients through the early stages of their recovery, it doesn’t make the period of adjustment any easier once they are discharged. Also, without support to ease the transition, some patients are at risk for additional injury or hospital readmission.
Fortunately, Shepherd Center’s Transition Support Program was created to address key medical, health and safety issues following discharge. Perhaps most importantly, the program and its dedicated staff members also focus on what’s most meaningful to patients and families to help build on the progress they made at Shepherd Center.
“It’s not just about helping them return home, but getting them back to life,” says Laura O’Pry, RN, BSN, CRRN, clinical manager of the program. “Many are not quite ready to return to school or work, so we can help them find a sense of purpose and accomplishment.”
As those who have benefited from the services will attest, the program also gives the comfort of knowing there is someone to lean on and help with problem-solving.
The primary goal of the Transition Support Program is to prevent re-hospitalization, improve health and safety outcomes and promote patient and family autonomy once the patient is discharged from Shepherd Center. Transition support involves a mix of case management, life skills, vocational services and peer support. Patients are typically referred to the program if they are deemed high risk. This could mean that they have an acute medical issue, such as a recurrent infection or cardiac issue, lack health insurance, or just need that additional support for a safe, smooth transition home.
Many patients and caregivers find it daunting to leave Shepherd Center’s structured and nurturing environment to face the unknown that awaits them at home.
“Even though we do a really good job of educating them, giving them resources and suggestions for how to structure their time, it is still overwhelming once they get home,” explains Tara MacCaughelty, CTRS, CCM, life skills therapist with the Transition Support Program. “Many are in freeze mode as a result.”
That’s where the phone calls, telehealth sessions and home visits from the Transition Support team can make all the difference for patients who are recommended for the program. Through these touch points, the staff at Shepherd Center helps to build confidence in clients and their support system to ease the transition.
“Patients and families are so relieved to have an ongoing connection to Shepherd Center, and that they aren’t just dropped into their previous home situation and left to their own devices,” says Kendra Moon, Transition Support case manager. “They feel more at ease knowing there is someone who will be checking in on them and helping them as needed.”
For eligible patients, case managers can provide home visits in the metro Atlanta area and serve as an advocate for two months, possibly longer.
Lisa Gentes says the program came at just the right time. Her nephew, whom she raised as her son, Matthew Derreberry, was badly injured in a motorcycle crash in August 2015 and, among other injuries, sustained a severe brain injury. After being minimally conscious for more than two months, he eventually found his way to Shepherd Center and received intensive rehabilitation through Shepherd Pathways, the hospital’s post-acute brain injury rehabilitation program.
“From the day of the accident, I was in a fog,” Lisa says. “It was like being a new parent all over again, but not knowing how to do it. I remember being scared to death that something was going to happen to him and desperately wanting to be able to ask someone who deals daily with these types of injuries, ‘Am I doing this right?’ and ‘What do I need to do next?’”
The team had closely followed Lisa and Matthew’s progress and recommended a life skills therapist to provide ongoing support in the home. With MacCaughelty’s gentle guidance, Matthew’s confidence soared, and as he gained more independence, Lisa also gained peace of mind.
“I coached Lisa on what was safe and appropriate for him, and demonstrated the type of supervision I would give him for a variety of tasks – for example at the gym or in the kitchen,” MacCaughelty says.
The goal was first to ensure Matthew’s safety and then give him the space he needed to safely make mistakes and to try things he was ready to tackle.
“Tara taught me how to give him more breathing room and trust that he was going to be OK,” Lisa recalls. “For example, having me sit outside of the bathroom door instead of being in there with him, or standing beside him as he walked instead of holding onto him. She even encouraged me to go to the store and leave him behind.”
Lisa jokes now that while she did venture out that first time, she talked with Matthew on the phone most of the time. While Lisa admits it’s a long process, slowly and through repetition of many tasks, Lisa and Matthew were able to apply the strategies MacCaughelty and Moon taught them.
Matthew is now able to take a shower by himself, make his own cup of coffee without the fear he will burn himself, walk up and down the stairs using a hand rail, manage his medications by sorting them into a pill box and even cook with supervision and safety reminders posted nearby.
“There were a lot of things Tara was more apt to let him do,” Lisa recalls.
One of those things was helping Matthew attain one of his personal goals – to drive his lawn mower again. At the time, Lisa was recovering from cancer treatment, so physical tasks like cutting the lawn were difficult for her.
“Matthew has a huge heart, and he wanted to be able to help out,” MacCaughelty says.
They worked toward this goal over several sessions. He would practice getting on and off the riding mower and walking the same route he would eventually maneuver. Lisa made a border for him to follow, and before too long, he was sitting atop his lawn mower driving, feeling some semblance of normalcy in his life again.
“There is such a wide range of goals we work on based on individual needs and interests and recovery rates, and then more personal things like being able to prepare meals, assume childcare responsibilities or pay the bills again,” MacCaughelty says. “For Matthew, it was mowing the lawn and contributing.”
Laura O’Pry, who has spent the majority of her 10 years at Shepherd Center on the inpatient side, says she is constantly reminded now of how much support clients need when they return home.
“I was so focused on what my patients needed in the hospital, I didn’t always stop to think about what happens when they return home,” O’Pry says. “You assume everything is going to be OK because you taught them everything you thought they needed to know. But the inpatient experience is only the beginning. The doctors, nurses and therapists give our patients the bricks to build the house, and the Transition Support Program is really the mortar to help fill in the gaps and help them maintain the foundation that was started.”
O’Pry recalls working with one client who insisted he could manage everything on his own. But upon visiting him in his home, she quickly noticed he had no way to leave his home safely if there was an emergency. There were rugs that needed to be removed because he struggled to get over them with his wheelchair. He also couldn’t open the refrigerator and had trouble reaching his water cup. On a day when no one was around, he quickly became dehydrated, a potentially life-threatening situation for someone who has a spinal cord injury. This client was referred to a life skills therapist to help offer solutions.
“These are things you don’t always think of, but they are real issues,” O’Pry says.
They’re issues that if not addressed, could prevent people from becoming more independent, attaining their optimal state of health or regaining a sense of normalcy.
“The ongoing support, education, guidance, problem-solving and assessment that we provide our clients and their families are some of our greatest offerings,” Moon says.
Still, the challenge the Transition Support Program faces is that each client and family are unique in their needs, obstacles, strengths and receptivity to support, Moon adds.
Part of what make the Transition Support Program such a success is how well the staff collaborates to determine what individual clients need.
“There is a lot of back and forth, and we work really well together,” MacCaughelty says. “I think it’s why we are able to get such good outcomes, especially for complex cases with urgent needs.”
One such example is 61-year-old George Mainville. He was living in the mountains of north Georgia when he was diagnosed with a rare autoimmune disorder called chronic inflammatory demyelinating polyneuropathy. He remembers his foot slapping uncontrollably one day when he walked down his driveway to get the mail. As time progressed, he lost function in his legs. He received care through the Spinal Cord Injury Rehabilitation Day Program from November through December of 2015.
After being discharged, living alone became too isolating.
“It was no good for my mind,” George recalls.
Together, the Transition Support team – including case manager Kendra Moon and peer support manager Minna Hong - played a key role in encouraging George to move to an apartment in Marietta, Georgia, which is closer to his health team and sister, Lee Busey. He received weekly guidance and help with problem solving. After George’s move, it was Moon's skillful assessment of his potential for increased independence that led her to refer him to life skills therapist Tara MacCaughelty. In his new space and through his participation in life skills, George learned how to safely do his laundry, take out the trash and prepare simple meals. During MacCaughelty's home safety assessment, she recognized the need for a padded shower chair and made suggestions on furniture reorganization for greater accessibility. George also identified the goal of increased community access, which led to a trip to the grocery store so he could practice getting in and out of the car and loading bags.
“We helped him see he was capable of doing things on his own – he just needed some support,” Moon says.
Moon, Hong and MacCaughelty often served as cheerleaders for George, even when it meant exercising a little tough love.
“Without them, I don’t think I would have been able to move to this apartment. They really make you see the possibilities,” he says. “They would tell me, ‘You can do that, and here’s how.’”
For more information about the Transition Support Program, contact Laura O’Pry at 404-367-1255 or firstname.lastname@example.org.
Below are some practical tips to help ease the transition to home so you can optimize recovery.
1. Prepare before leaving the hospital. Taking the time to get organized before heading home is important. For example:
2. Map out a schedule and stick to it. Even if you aren’t quite ready to return to school, work or parenting, having a routine with tasks to work on every day can be very motivating. It helps fill your days and keeps your mind engaged, too. When initiating new outings, give yourself an extra 30 to 60 minutes until you fine-tune your routine.
3. Follow the home exercise program recommended by your therapy team. Doing so will help you maintain and continue to build strength and range of motion.
4. Survey your home environment. Take a look around to make sure your home is safe and accessible. Are there rugs that could get caught in your wheelchair or serve as a tripping hazard? Can you reasonably reach for things like your phone, medicines or a cup for water? What about getting into and out of the bathtub or shower? Do you have an emergency plan in place?
5. Know how, when and why you are taking each of your medications. Talk with your health team if you have concerns about your medications (for example, cost, side effects, difficulty remembering to take them, etc.). You might consider using a pill box to stay organized. If you are currently inpatient or in the day program at Shepherd Center, you also can use the Patient Engagement Portal, which is an online system that helps you organize your medical information. For more information, visit myshepherdconnection.org/patient-portal.
6. Post reminders around the house if memory is an issue. Leave notes or set alarms to help you remember what you are supposed to do before you cook, or when to take your medicine, etc. You can also check out the Tetra Alarm app, created at Shepherd Center and available on Google Play. The app allows you to set multiple reminders throughout the day.
7. Build your team. Make a list of family and friends who can help you – even if it’s just to listen. If you haven’t already, tap into the peer support program at Shepherd Center. It can be helpful to talk with someone who has faced a catastrophic injury and made the journey back home and to their community.
8. Check in with yourself or your loved ones. Recovering from a spinal cord injury, brain injury or other neurological event can take an emotional toll. You will likely have good and bad days. Remember that you don’t need to do it alone, and there are counseling services to help.
9. Stay engaged. Make sure you are taking part in activities that give your life meaning. You can often do more than you think you can. Your therapists can show you how.
10. Speak up and advocate for yourself. Let someone know if your needs aren’t being met.
For ongoing support and resources, visit My Shepherd Connection.
Written by Amanda Crowe, MA, MPH
Photos by Louie Favorite
Shepherd Center, located in Atlanta, Ga., is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury or brain injury. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation and is a 152-bed facility. Last year Shepherd Center had 965 admissions to its inpatient programs and 571 to its day patient programs. In addition, Shepherd Center sees more than 6,600 people annually on an outpatient basis. For more information, visit Shepherd Center online at www.shepherd.org