After spending the early part of my career in public arts management, things shifted for me after the transformational experience of parenting a person with complex health care needs. For the past 10 years, I have worked to improve healthcare quality and equity both in the US where I’m from, and in Sweden where I now live.
Today I facilitate collaboration in multi-stakeholder communities and events, including researchers, policy makers, industry, civil society, clinicians and the public. Collaborative partners include Harvard Medical School, Dartmouth College, Karolinska Institutet, the National Institute for Children’s Healthcare Quality and The BMJ.
As a change agent, I love helping other change agents grow their courage and impact while sustaining their vocation. In my work, I draw on training in community organizing and systems transformation with Harvard Kennedy School of Government, in quality improvement with organizations such as the Institute for Healthcare Improvement, in mindfulness-based stress-reduction techniques through the Center for Mindfulness at the UMass Memorial Medical Center, and in reflective group programs as a facilitator-in-preparation through the Center for Courage & Renewal.
For more details on my professional experience including publications, see my CV on LinkedIn.
I was very enlightened by your blog, I too am the parent of a special needs child with Noonan’s Syndrome and am proud to be my child’s best advocate. It’s been a long road… to JOY!
I love the way you put that, Debbie. The long road to joy. For a while there it felt like a forced march, but luckily that didn’t last forever. Joy indeed, that’s where we’ve ended up. Say hi to all my NS peeps!
I am very interested in your blog and care map. I am the parent of an adult with special needs (he is 19 and has a website business, Alex’s Art Loft). My care map has tons of holes in it because of the uncertainty of adult services and the challenges of helping someone with autism run and sustain a business, not to mention the paperwork and agency confusion. And the heartbreak and sleepless nights that he may not get the services or the quality of care that he needs. Care maps go through many edits as the years go by…Diana Martin
I can’t wait to check out Alex’s site. Yes, these are only snapshots, outdated almost the minute you put the pen down. Transition to adulthood is certainly a huge challenge. I wish you the best and hope you both connect with some other great families for support and company.
A few months ago you gave me permission to show your Care Map as part of a larger discussion within our organization. That has been so helpful to helping our providers understand that while medical science and services are critically important, Medically Complex Children and their families face many more complexities than just the medical ones. We are now engaged in several initiatives surrounding Medically Complex Children, which brings me to the task of this note. I know that you are now living in Stockholm; but would you have an interest and availability to meet with key individuals in this discussion – at our expense, of course. Those individuals might include our Executive Commissioner for The Texas Department of Health and Human Service, our own staff and executives, and maybe even spend time with the leadership of our national association, Children’s Hospital Association. I thought it best to start with this question and should you have a favorable reply we can always work out the inevitable details. Feel free to respond to me directly.
I look forward to hear from you at your convenience.
Larry, please send me an email at caclind (at) gmail.com and we’ll continue the conversation. Thanks!
Hello, I’m writing to ask your permission to use your caremap in a grand rounds presentation. I’m a pediatric pulmonologist at Stony Brook Children’s Hospital on Long Island, NY. Years ago while working on national guidelines for chronically invasively ventilated children. Next week I give a talk entitled “shared decision making for children with chronic respiratory failure- It takes a Village and a Process.” We have recently published an article with that title. We studies the complex medical ecosystem in which these decisions are made.
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