THE NEUROLOGIST'S ROLE IN SUPPORTING TRANSITION TO ADULT HEALTH CARE
According to the U.S. Census Bureau, 18 million U.S. adolescents age 18-21 are moving into adulthood and will need to transition from pediatric to adult-centered heath care. Appropriate planning of a youth's transition may assist in preventing gaps in care (Brown et al 2016), particularly when the individual has complex medical needs. In cases where the adolescent lives with a neurologic condition, the child neurologist plays an important role in ensuring that the transition from pediatric to adult care is successful. Providers of neurologic care should start transition discussions early, in partnership with families, and guide their patients' transition planning processes.
To help make transitioning to adult health care a reality for patients and families with neurologic conditions, the Child Neurology Foundation (CNF) convened a multidisciplinary panel to develop the steps needed to ensure a complete and effective transition. CNF's panel developed 8 Common Principles that were then featured in a 2016 consensus statement published in the journal Neurology. This statement was endorsed by the American Academy of Neurology, the Child Neurology Society, the American Epilepsy Society, and the American Academy of Pediatrics. The authors of the consensus statement believe that the 8 Common Principles apply to a broad spectrum of neurologic conditions
After publication, CNF set out to create tools that matched up with each of the 8 Common Principles. The tools are meant to help providers use the Principles in their practices and to help families communicate with providers around their child's transition needs and goals.
1. EXPECTATION OF TRANSITION
The first Principle highlights the expectation of transition. Ideally, the child neurology team will begin discussion about the expectation of transitioning with patients and caregivers no later than the youth's 13th birthday. Beginning the discussion early will give patients and their caregivers ample time to prepare for the need to transition out of pediatric care into adult care. To document and make this expectation clear, it is helpful to have an office Transition Policy that outlines the child neurology practice's approach to transitions as well as a Transitions Checklist which can be followed throughout the subsequent years.
2. YEARLY SELF-MANAGEMENT ASSESSMENT
The second Principle recommends that the child neurology team assess the youth's self-management skills starting at age 12 and will continue annually. Self-assessments should be entered into the youth's medical records. Youth with intellectual disabilities should not be excluded from this process, as many may be able to develop limited self-management skills. However, in cases of a severe neurologic conditions in which self-management skills do not change, an annual reassessment may not be necessary. Self-Care Assessment (Youth/Young Adult) and Self-Care Assessment (Parents/Caregivers) tools can assist with this Principle.
3. ANNUAL DISCUSSION OF MEDICAL CONDITION AND AGE-APPROPRIATE CONCERNS
The child neurology team talks with each youth and his or her caregiver(s) about transition planning and transfer readiness at least annually at scheduled visits, beginning at age 13 years. At yearly scheduled visits, the neurologist should address (1) the youth's medical condition; (2) current medications and potential side effects; (3) signs and symptoms of concern; (4) genetic counseling and reproductive implications of the condition; (5) issues of puberty and sexuality; (6) driving, alcohol and substance use and (7) emotional/psychological concerns and wellness. The child neurology team should drive this discussion and continue to discuss the eventual transfer to adult care. In an ideal situation, these discussions take place separately from regularly scheduled visits.
4. EVALUATION OF LEGAL COMPETENCY
By the age of 14, the child neurology team should initiate discussion with the youth and their caregivers regarding the youth's expected legal competency (whether there is a need for legal guardianship and powers of attorney) in the medical record. If the youth's expected legal competency is unclear, an assessment of that capacity should be made annually. Some youth with cognitive limitations will require legal guardianship and powers of attorney to be established, preferably as soon as they reach the age of majority in their state. It's important to know that the process of obtaining legal guardianship can be expensive and time-consuming. However, social workers, IEP team members, and community-based support services may be helpful throughout the guardianship process.
5. ANNUAL REVIEW OF TRANSITION OF CARE PLAN
The child neurology team should assure that a transition plan that meets the comprehensive needs of the youth is developed in collaboration with the youth, caregiver(s), other health care providers, school personnel, vocational professionals, community services providers, and legal services (as needed). The plan addresses health care finance and legal concerns, primary care, other specialty care, education to employment, housing, and community services. It usually makes sense to transition from all pediatric subspecialists to adult care at the same time; this is most likely to be achieved when the various pediatric health care providers plan together. A pediatrician or family practitioner, acting as a medical home, may coordinate and maintain the comprehensive transition plan. The comprehensive transition plan should identify the youth's goals and barriers or obstacles to these goals. The Plan of Care tool can help with this Principle.
6. CHILD NEUROLOGY TEAM RESPONSIBILITIES
The child neurology team should develop and verify the neurologic component of the plan of care and update it annually. This should include a specific summary of all health care issues; a summary of the youth's and caregiver's goals for adult service requirements; the planned timing of the transition to an adult provider of neurologic care; any necessary additional testing or assessments to be completed before transfer; current assessment of the youth's understanding of his or her neurologic diagnosis and management (including prognosis and any reproductive implications of the diagnosis); and emergency plans and the youth's advanced plan of care (e.g., medical power of attorney, living will, do not resuscitate order). For those with profound cognitive disability, plans for establishing guardianship are also included. The Plan of Care tool can also help with this Principle.
7. IDENTIFICATION OF ADULT PROVIDER
One of the central challenges in the medical transition of youth with neurologic conditions is the identification of an appropriate adult provider. Therefore, the child neurology team, in collaboration with the youth and caregiver(s), should identify an appropriate adult provider(s) for the neurologic condition(s) before the anticipated time of transfer. Difficulties in identifying an adult provider should be considered. These include the possibility of an adult provider being uncomfortable accepting patients with intellectual or behavioral challenges, as well as treating patients with rare childhood-onset disorders, and those with inadequate health insurance coverage. When an adult health care provider is identified, the child neurology team should forward a Transitions Package that includes a Transfer Letter to the adult provider, Self-Care Assessments, Plans of Care, and a Medical Summary. An updated copy of this document should be routinely provided to the youth and caregiver. Identifying an adult provider should take place 1 to 2 years in advance of the actual transfer. If an adult health care provider is not identified before the planned time or age for transfer or transfer is delayed because of extenuating circumstances such as an acute event, the child neurology team is responsible for continuing to assure the youth receives adequate care.
8. TRANSFER COMPLETE
The child neurology team directly communicates with the appropriate, identified adult provider(s) to ensure that the identified provider agrees to accept the patient and an appointment is made and kept. The child neurology team documents the youth's transfer into the medical record. The child neurology team is responsible for confirming that the transfer has been completed and adult care is established. Adult health care providers may be more open to accepting patients with neurologic conditions if they are assured of direct access to the pediatric provider should questions arise. Note: There are some youth with neurologic disorders who are not expected to live into adulthood. Transition to an adult health care provider may not be appropriate in these cases, although child neurologists may still adapt their practice with these patients to maximize skills such as self-management and independence. Conversely, some children are treated by adult neurologists; a pediatric-friendly, family-based approach should evolve to an adult model as developmentally appropriate for the patient. In both of these cases, the common principles may help to identify areas of focus for such adaptation.
It's important to remember that transitioning from pediatric care to adult care should be thought of as a process, not an event. Using the 8 Common Principles to guide the transition process can ensure that it goes as smoothly as possible. • To read the entire consensus statement and to view and download all transition tools developed by the Child Neurology Foundation, visit childneurologyfoundation.org/transitions.
"You're such a good parent. Lorne is lucky to have you," says my neighbor as I put my son on his morning school bus. "I don't know how you do it, with work and all," Laura continues. I thank her for her kind words. But as I walk back to my house, I think "If Laura only knew that I'm barely keeping it together she'd be so surprised."
"Laura doesn't know it took every ounce of self-control for me not to scream at the bus driver. He conveniently forgot to tell me that my son's route changed. Starting today, Lorne will be picked up 20 minutes later. Now I'm going to be late for work.
And to make matters worse, today is my performance appraisal. What lousy timing! My boss isn't going to be happy when I arrive late and miss the weekly staff meeting. And to top it off, I'm supposed to leave work early to attend my son's IEP meeting with his teaching staff. I feel like I'm going to explode. I'm only one person but the world expects me to be a superhero. Nobody realizes how hard and demanding being the parent of a special needs child is."
1. Acknowledge their dedication
Simply tell parents they're doing a really good job, especially since it's under very stressful circumstances. This is something they rarely hear but will deeply appreciate. Managing all aspects of a child's daily living—including personal needs, school activities, therapy sessions and medical appointments—can be overwhelming, even for the most organized and dedicated parent. Add in work, home and other family responsibilities and it is apparent why most special needs parents feel they're at their wits end. Your words of encouragement, recognition and praise will be a great morale booster. And with Mother's and Father's Day approaching soon, this is a perfect time to send a greeting card letting them know they're great parents. Buy a balloon that says "You're a wonderful Mom" or "You're the best Dad". It will really make their day special.
2. Listen without judgement
Most parents are weighed down by the guilt of feeling like they're not doing enough, financial strain from the costs of proper child care, and constant worry that their marriage or family is falling apart. Day in and day out, they're taking care of their special needs child without as much as a "Thank You." At the same time, these dedicated parents are subjected to the whole world staring at them, passing judgments and making comments. These parents have to turn the other cheek and take the high road when they hear people laughing, whispering or saying hurtful things about their child's inappropriate behavior. But over But how could they? Laura doesn't even know and I see her every morning. Like many special needs parents, I keep everything inside. So, to the outside world, life is good. As the saying goes, appearances can be deceiving.
An Autism Parent's Reality
Perhaps you have a friend, family member, neighbor or coworker who is a parent of a special needs child. And, like me, it looks like everything's fine with them. But don't be fooled. Their lives are not perfect. They need your support and understanding. As the nation recognizes Autism Awareness Month and hundreds of organizations and people bring much needed attention to the key issues surrounding autism, it is important to remember those who seldom receive attention to their unique situation—the parents of individuals with autism. They need and deserve your help. Here are a few easy ways you can give it.
time, to their credit, they learn how to develop a thick skin, take a deep breath and resist the urge to punch everyone who looks at their kid funny. That's character building in action. So bring over some coffee or tea with a donut or bagel in the morning, or a nice bottle of wine in the evening. Sit down and just listen. Allow them to laugh, cry, vent and blow off some steam. It will do wonders for parents to unload the weight of their responsibilities, even for a short time. No one expects you to solve their problems or even offer solutions. A shoulder to lean on is probably all they need.
3. Give an unexpected break
Parenting is a 24/7, 365-day job for these overworked parents, so any time they can get a few hours for themselves is great. Most don't have the chance to participate in the hobbies, events or activities they used to do before becoming parents. Offer to watch their son or daughter at home or take him/her to a park, museum or movie for a few hours. And if you're a family member or close friend, perhaps you can keep their son or daughter overnight or for a weekend. This will allow parents to do something they enjoy but never get a chance to do. They'll also have "peace of mind" knowing their child is safe with you and well-cared for. Best of all, they won't have to worry about childcare costs.
4. Run an errand
School appointments. Medical visits. Therapy sessions. Work. There's never enough time for parents to get everything done. Little things like picking up some groceries for them when you shop at the supermarket or dropping off a few letters at the post office is a real time-saver. It's one less, time-consuming task they can scratch off on their long "To Do" list.
5. Share household tasks
An extra pair of hands is always welcome and most definitely valued. Helping parents with everyday tasks like washing dishes, hanging up clothes or sweeping the kitchen floor will be very much appreciated.
6. Bring a surprise dish
A pizza pie, box of chicken or even Chinese take-out. A day without cooking is definitely guaranteed to put a huge smile on a special needs parent's face. A nice dinner can make everyone feel special and appreciated. Small cakes or little cupcakes are wonderful treats for dessert. Gift cards for a local restaurant can be a lovely surprise.
7. Encourage good health
Taking care of their health is usually placed on the back burner, so it's important to remind parents to take care of themselves. They should try to get at least six hours of sleep, make time to eat properly and exercise.
They don't have to join an expensive diet plan or pay for a gym membership. In fact, all they need is a pair of sneakers, the Internet, or a library card. The Spring is a perfect time to begin an exercise program. If you can, become a workout buddy.
A 30-minute walk, three times a week, is not only excellent for your heart, but regular fresh air and exercise can also benefit your mental health by reducing stress. You'll also provide extra motivation and accountability for these parents. And it's a great way to talk and catch up with each other's lives.
There is also plenty of free information on healthy eating on the Internet. Exercise DVDs are great to use at home and may be available at no cost by borrowing them from their local public library. Dancing at home to their favorite music can give them a great workout, while working off stress at the same time. You can also suggest meditation or other relaxation techniques to help them unwind.
8. Stay in touch year-round
Special needs parents often feel alone and isolated, especially around the holidays and other celebratory times of the year. So it's beneficial to let them know you're there, if they need you. Send a text or email or call for a quick chat. Knowing you care may be all they need to get through the day.
A Change of Heart
I've been doing some thinking about Laura. Tomorrow morning when I see her, I'm going to invite her over for coffee on Saturday. And when she comes, I'm going to let her in on my little secret – I'm struggling with all my responsibilities and could use some friendly advice and sup port. I know that it takes a village to raise a special needs child and I hope she'll agree to be part of mine.•