In three words I can sum up everything I’ve learned about life. It goes on. Robert Frost
We’ve all been there. The parents ask you what they’re going to do now that their child is turning 21. You, of course, have no idea of who’s going to take care of them, nor do you really appreciate what’s ahead for them.
In most children’s lives, turning 18 or 21 represents the pivotal transition point from childhood to adulthood. It’s the exciting time when they get to leave their parents, explore the world, make new friends, experience a romance, and expand their universe. But what does it mean for someone with a chronic disability: it often means loss. Loss of childhood friends and siblings who are moving on to their new exciting lives; loss of many of the social and funding programs they’ve come to rely upon; loss of childhood support systems such as schools, clubs, and inclusive sports and recreation; it means having to deal with aging parents on whom they rely and who might not be able to care for them as well as when they were younger; it means moving into living situations which may not be of their own choice; it often means dealing with chronic pain and depression; it means loss of access to the specialists who have been taking care of them since they were very young; it means going to adult hospitals and seeing physicians and other healthcare providers who know little about their disability.
More than most professionals, we are passionate advocates for our patients. We fight the health system to provide care for these children, we lobby our legislatures for more money for their programs, we get down on the floor and work with the kids on mats, and we go with their parents to schools to fight for their rights for an appropriate education. Are we fully aware, however, that we are working within systems (throughout the world) which then send these same children to the ‘wolves’ when they become adults?
These ongoing issues are well documented. Liptak1 catalogued many of the problems in all of the dimensions of the ICF. Chronic pain, lack of access to healthcare, poor nutrition with gastrointestinal disease, poor dentition, chronic constipation, bladder problems, deterioration in functional mobility, progressive musculoskeletal deformity, cervical spinal arthritis with neurological deterioration, mental health issues, lack of participation in social settings and recreation, and unemployment.2–4 We’ve known these facts for years.
We must reexamine the missions of the AACPDM and the EACD to educate our members and other healthcare professionals about the needs and care of adults with disabilities. We must use common sense. We can’t wait for prospective randomized trials. We need to start educating our patients and families about transition issues starting at age 15. We should act locally to develop a cadre of adult providers who will have the same respect and passion for their new patients as we have for ours. We need to educate and support the adult providers in their practices, at their meetings, and in their literature so that they might benefit from our expertize. We need to advocate for laws, programs, and research that bridge the lifespan. We need to assist our children’s hospitals and regional adult hospitals to develop transition and lifespan clinics. We need to work with local governments to insure that recreational and life-enhancing programs with adequate transportation are available. We need to get education on chronic childhood disabilities and their implications for adults into the professional schools and residencies. We need to educate mental-health professionals to fully recognize, understand, and treat the anxiety and depression that often occur in adults with disabilities. We need to consider wholesale changes in the way our medical system is arranged. Why aren’t there lifespan professions for disabilities? Who decided that funding is cut off when a patient reaches 21? We need to remind the populace that providing comprehensive lifespan care isn’t just taking care of ‘poor’ people with disabilities, it means insuring that they, too, will have the choices and integrative care and supports that they will ultimately require to accommodate their own changing lifespan needs.
To use a sports metaphor, even if we can't coach the patients for the whole game we need to provide the tools for the next group of coaches to partner with our patients to complete the game.
The art of living is more like wrestling than dancing. Marcus Aurelius, Meditations