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Cristin Lind’s Story

A Parent Partner for NICHQ's Massachusetts Medical Home Initiative finds a professional calling in advocacy for children with special needs


February 2012

By Julie Eisen 

Meet Cristin Lind. She is a parent of two, an advocate for children with special healthcare needs, and a Parent Partner on NICHQ’s Massachusetts Medical Home Initiative.

Every other week Lind goes to Cambridge Pediatrics, the medical practice that serves her two children, to meet with a team of seven people--two doctors, a nurse practitioner, a nurse, a medical assistant, a care coordinator, and another parent partner--to discuss how to improve the way the practice delivers care. Cambridge Pediatrics is one of 13 medical practices across the state of Massachusetts selected in July 2011 to receive funding to transform into a patient-centered medical home by the end of 2013, through a grant from the Centers for Medicare and Medicaid Services made available through the Children’s Health Insurance Program Reauthorization Act of 2009 (CHIPRA).

(You can learn about the concept of a Medical Home here.)

On this team, Lind offers the parent perspective on everything from improving intake forms, to keeping patient care plans current, to how to best transition an adolescent into adult care. The medical home seeks to make things easier for parents – especially parents of children with special healthcare needs, like Lind. Ensuring that the organization’s day-to-day practices are seamlessly coordinated is an important first step.

From Parent to Advocate

Before Lind became a Parent Partner in the Medical Home Initiative, she became an advocate for her son. Lind has two children – a seven-year-old daughter named Dagny, who is typically developing, and a nine-year-old son named Gabriel, who has Coffin-Lowry Syndrome, a rare genetic disorder that causes medical and behavioral challenges and developmental delays. Gabe was born without any obvious symptoms, but within six months Lind and her husband, Dan, learned he had a congenital cardiac abnormality and muscle weakness. Over time, more symptoms appeared, but it wasn't clear what he had, and whether he was cognitively impacted. It wasn't until this past January that the Coffin-Lowry Syndrome diagnosis was confirmed.

While Gabe’s health was stable, Lind had a “nagging suspicion” that things were falling through the cracks in his development. “I couldn’t envision how he was going to get from where he was to adulthood with the services he was getting.” So in 2010 she sold her business and decided to take the year off to focus full-time on Gabe’s needs. During this time, Lind hired a personal care attendant; worked with a special education consultant, a lawyer, and specialists to get Gabe placed in an out-of-district special education school; and joined advocacy organizations and a support group.

“It takes a lot to get the resources that you need,” she says. “I had to give myself over to this role full-time to get him what he really needed. I don’t think it should be that hard. Everybody can’t do that, and it feels a little unfair.”

Lind’s zeal for advocacy started building. In 2010 she started a blog about her experiences raising a child with special healthcare needs. In the summer of 2011, Lind was contacted by Mary Saginario, Cambridge Pediatrics’ Team Lead, and was asked to join the Collaborative CHIPRA Team as a Parent Partner. With an interest in “exploring the world of advocacy a little bit deeper,” she agreed.

Paving the Way for Others

When explaining why she decided to commit to the two-and-half-year project, Lind says the reason was two-fold. “One, I know for myself that I do a better job of advocating for my son who has special needs and my daughter who doesn’t, when I learn as much as I can about what’s happening in healthcare, pediatric healthcare, disability rights, and special needs advocacy.” She recalls a quote from Dr. Richard Antonelli, faculty co-chair for the Medical Home initiative, who says, “Parents don’t know what they don’t know.” During her extra time with the providers at Cambridge Pediatrics, she has learned of “small but significant” services of which she was unaware.

Her second reason for joining was to take advantage of an opportunity to improve the practice and pave the way for others who do not have the time and resources to do the legwork that she has been able to do. “Every parent of a child with special needs hits a point where they realize that it takes a lot to get the resources that they need. I want to make a contribution to making things easier for other families who may not have figured out how to access everything we have. I think the medical home has the potential to make things a lot better for kids and their families.”

When Lind attends meetings with the Cambridge Pediatrics Team to help them review their practices and materials, she puts on her “parent hat.” She offers insight not specifically as “Gabe’s mom or Dagny’s mom,” but as a parent of children in the practice who is invested in making positive change. “Sometimes I might have professional experience on how to do something a particular way,” she says. “That’s an added benefit of bringing parents into the mix – they bring their own professional skills in addition to their parent perspective.”

From Advocate to Professional

Eventually Gabe’s day-to-day activities became more settled and his mom felt ready to return to work part-time. By then it was obvious that she was really interested in working for families and children with special needs, but she didn’t know exactly how. The Medical Home Initiative has helped give her a boost. A few weeks ago Lind began a new position with the Federation for Children with Special Needs. “I didn’t plan on doing this,” she says, “but it just found me.”


*Cristin Lind joined the NICHQ Board of Directors in September 2012! Learn more about her background and others serving on the board
.

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