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MEMBERSHIP | MEMBER PERSPECTIVES

Family MembersPhysicians and Other ProvidersHealth Plan Representatives
State Agency Leaders
Educators & Researchers

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Family Members
"As a parent member of the Consortium, I learn an enormous amount about what is going on in the state to benefit children and young adults. But perhaps even more importantly, knowing that so many people care so much and work so hard on behalf of kids like my son, I feel optimistic about what his future will bring, even though he faces so many challenges."

"With 17 years of experience as the parent of a child with special health care needs, and, as someone who has worked in the field for over 8 years, I bring to the Consortium our real life experiences as a family negotiating the health care system. I am able to reflect not only our own situation but also those of the many families I know in similar circumstances. My sense, when sharing this background, is that Consortium members place a high value on this input and perspective."

"I remember a surprising feeling of belonging at my first Consortium meeting: I’d spent years hassling, negotiating, and struggling with medical and school personnel on behalf of my son—then a 16 year old high school student with CP—and I suddenly found myself among smart, experienced professionals who understood this huge part of my life. At first I thought these must all be parents of kids with special needs; that would explain it. But many of them weren’t—and many of them were pediatricians. I spent the rest of the day with my mouth open. I had stumbled into the secret headquarters of the Good Guys."

"The exchange of ideas among members broadens mutual understanding between families and professionals. With the complexities of caring for a child whose needs go beyond what is typically expected of parents as caregivers, physicians as caregivers, and the services provided by health insurance and public agencies, that mutual understanding is essential."



 
 

Physicians and Other Providers

"For those of us working diligently to provide Medical Homes for our patients with special health care needs, it is critical to recognize the vital interdependence of family partnership, community resources and our clinical work. As a practicing pediatrician and member of the Massachusetts Chapter of the American Academy of Pediatrics Committee on Disabilities, I appreciate how my affiliation with the Consortium for CSHCN provides an opportunity to foster these vital linkages."

"In a sense, the Consortium helps to develop and sustain the 'Village' that supports the children, youth and their families. The Consortium is a remarkable organization that advocates for the evolution of medical systems into Medical Homes."

"As a pediatrician whose interest and specialty is in the care and coordination of children with complex health care needs and developmental challenges, I greatly value my involvement. This is an organization and group of people who are involved in many different ways with individuals and families. Their ideas and collective resources are imperative in fostering understanding, awareness and potential solutions to the problems that children with special health care needs and their families face, as well as the challenges that providers confront in delivering care and support."

 

Health Plan Representatives

"Health plans have an interest in participating in the Consortium because we recognize that children and families facing the challenges of special health care needs are often insufficiently supported. Health plans want a better understanding of this population of members, and also wish to improve the service they deliver to such families. Our goal is to have a better understanding of who these individuals are, what their families face, and how we can improve our processes."

"I was asked to join the Consortium by colleagues who were also working in the area of children with special health care needs. I knew these folks not to be inclined to having their time wasted."

"As participants, we bring knowledge of benefit structures, case management and authorization processes, and data about our members. Further, we bring an understanding of the forces affecting health care in general, such as rising costs, declining public sector funding, purchaser demands, needs of providers and most importantly, the demands and expectations of members."

 

State Agency Leaders

"In the past couple of years, I’ve looked for more and more ways to interweave my work for the Commonwealth with the growth and evolution of the Consortium. For me, the Consortium is a unique venue – a wonderful opportunity to meet, confer, brainstorm, and collaborate with individuals who see the policy and program challenges through the same kind of lens.

I enjoy the company of smart, committed people – both parents and professionals – who despite their diverse backgrounds are broadly united around the Medical Home concept. I love working toward consensus with folks whose perspectives differ from mine.

And finally, as a state bureaucrat, I place great value on the nongovernmental contacts – nonprofits, parent and professional organizations, businesses, health plans, etc. The Consortium is a place to redefine how kids with special needs and their families receive health care and services in Massachusetts."

"The Consortium is
a place to redefine how
kids with
special needs receive health care in Massachusetts."


Educators & Researchers

"I am on the faculty of the Maternal and Child Health Department at the Boston University School of Public Health. The Consortium keeps me in touch with the day-to-day experiences of parents and providers -- the key players in relation to health care for children with special health care needs -- and with state agencies and payers that form the systems in which that care is delivered. It gives me an opportunity to test the realism and the relevance of what I teach and of my research. The Consortium is a two-way street, however, so it also gives me an opportunity to share what I learn with others, and to have an impact on real-world systems of care."