When I’m not blogging

My name is Cristin. After spending several years navigating resources and coordinating care for my son with complex needs, I felt called to use my experience to improve health, education and community inclusion for all families. I have served in leadership roles that support and advise partnerships between patients (or people, as I like to call them), their families and health care professionals in the design, implementation and evaluation of health care systems.

A Family Leader for Mass Family Voices, a project of the Federation for Children with Special Needs, I served as family faculty for a pediatric medical home learning collaborative facilitated by the National Institute for Children’s Healthcare Quality (NICHQ) and facilitated family participation in the Children’s Healthcare Quality Coalition (CHQC). I also facilitated family and patient involvement for 13 practice improvement teams in patient-centered medical home projects at Cambridge Health Alliance, a community-based health system affiliated with Harvard Medical School.

A graduate of Boston Children’s Hospital’s Leadership Education in Neurodevelopmental Disability fellowship, I’m a member of the Society of Participatory Medicine and Mass Families Organizing for Change, involved in the Patient-Centered Outcomes Research Institute (PCORI) and I served on the board of the National Institute for Children’s Healthcare Quality. Partnering with Tufts Medical School and Harvard Medical School, my family and I welcomed third-year medical students into our home to share our experience. I speak regularly about authentic family-provider partnerships nationally at conferences such as the Institute for Healthcare Improvement (IHI) and the Association of Maternal and Child Programs (AMCHP) and represent patients and families for organizations like the Patient-Centered Outcomes Research Institute (PCORI) and the Institute of Medicine.

I am also research and develop a family-driven care coordination innovation using a tool I created to coordinate my son’s own care called Care Mapping.

I recently moved from Massachusetts with my husband, son and daughter to Stockholm Sweden. I continue my work on improving health care through innovative partnerships by supporting the development of quality registries, when I’m not spending my time figuring out how to navigate a new health care and education system for our son.

I welcome you to join in an on-going conversation about collaborating for systems change by subscribing to this blog, in which I write regularly about the experience of living in a complex special needs family  or by connecting with my on Twitter @DurgasToolbox.

Recent presentations:

February 11, 2013: Association of Mother & Child Health Programs (AMCHP) Annual Conference. Activating Authentic Family-Professional Partnerships Within the Massachusetts CHIPRA-Funded Statewide Child Health Quality Initiatives.

March 9, 2013: Federation for Children with Special Needs, Visions of CommunityCare Mapping: An innovative tool and process form families managing the care of children with complex special needs.

April 7, 2013: IHI (Institute for Healthcare Improvement) International Summit on Improving Patient Care in the Office Practice and the CommunityTransformation as a Safety Net: The ACO/PCMH Model at Cambridge Health Alliance. 


6 Responses to When I’m not blogging

  1. Debbie Martindale says:

    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!

    • Cristin L. says:

      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!

  2. Diana Martin says:

    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

    • Cristin L. says:

      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.

  3. Larry Tubb says:

    Dear Cristin,

    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.

    Best regards,


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