November 04, 2011

Family Voices Friend Allen Crocker Passes Away

(From Family Voices Director of Programs, Nora Wells - and farther below, from Former Family Voices IMPACT Director Betsy Anderson)

Allen was an incredible mentor and friend to many parents over the years, as well as a national figure in the development of family professional partnerships and respect for family views.. as well as coordinated care... as Betsy says, family centered care...long before the term was coined. 

I well remember my first meeting with him at Boston Children's Hospital when our son Daniel was 18 months old.  Someone had told me he was a doctor really receptive to family input, and that he had a nice secretary whom you could call up and say you wanted to speak to him about such a topic!  Sure enough, she gave me an appointment, and  I brought Daniel to the meeting, in his office at the Developmental Evaluation Clinic at Boston Children's Hospital.  He bounded in to his office stacked on every side with books and articles, and with great enthusiasm began talking about all the things that I, as a young parent of a cshcn (not a term in use at the time!), could get involved in.   Imagine how encouraging it was to be heard and respected by such a very prominent doctor, the head of a well known nationally innovative clinic!

Throughout his life he lived and supported such incredible collaboration and partnership.  He was dearly beloved by families and thousands of professionals whom he trained with such principles.  His energy was boundless.   He will be dearly missed. His legacy lives on throughout the country.

Nora Wells


(From Former Family Voices IMPACT Director Betsy Anderson)

Dear Family Voices Friends and Colleagues -

What a loss, even though we knew Allen Crocker's death would happen. . .He's left us a a lifetime of memories, wonderful warm good times, and amazing accomplishments - but it still seems too hard to imagine or bear. He was one of those who changed the world for our children and for us as families, not only in Boston but across the country. He did not have to be taught family-centered care; he lived and modeled it - before there was a phrase for it - for generations to come. He was a pediatrician who headed a clinic at Boston Children's Hospital, but more, he was an amazing collaborator who listened to us as families and came to our meetings - even when he wasn't on the agenda!

I pulled out my "Allen file" - articles, little notes, poems, programs of events going back for decades. Among many I see a message from a parent on the West Coast whom I hadn't known knew Allen. She said,"When I found out I was pregnant with my son, I called Dr. Crocker because he was listed in information on Down Syndrome. He actually answered the phone! His first comment to my news was, "Congratulations!" No one had said that to me and it meant so much." 

He gave Nora (Wells) and me a wonderful opportunity, back in the 70's, of speaking to his trainees at Children's Hospital, Boston - what are now LEND trainees. It's hard to stress how unusual that was then - we as parents were always on the "need" side of the equation, there was no idea then that we had opinions and ideas, or - contributions to make! 

In one tribute to him I see a list of ten qualities, characteristics of Allen's: 1) Ventures out (from the hospital); 2) Listens and becomes engaged; 3) Collaborates; 4) Supports fledgling efforts; 5) Creates opportunities; 6) Shares feelings and thoughts; 7) Is creative and fun; 8) Thinks big, thinks small, thinks personal; 9) Works tirelessly; 10) Inspires others! 

Below I'm attaching a letter I wrote him in 1995 on the occasion of a wonderful 70th birthday celebration for him we had here in Boston.  Sadly, though with wonderful memories, And with the thought that it's always the right time to reflect back and to thank those who have made a difference in the lives of our children and families.


December 2, 1995

Dear Allen, 

What an event! And what a wonderful opportunity to tell you how much you've meant to me and to our parent efforts all these years. 

Allen, you have so many wonderful qualities and you have shared so much of yourself with us over the years. In turn this has helped us to accomplish so many things we've thought are important for our children and our families.

You are a person who really listens to families. You have entered wholeheartedly into so many of our discussions and initiatives. You are a person who actually leaves the hospital. You come out to where we are - to our meetings, to our homes. Moreover, you began  doing  this  back  when  families  were  viewed  with some skepticism  (and  not  a  little pathology). While the concept of families as partners is well accepted now - you helped to pave the way for it long before it was de rigueur. 

Back  when  our  small  group,  Collaboration  Among  Parents and Professionals,  the  health  offshoot   of  the   Federation  for Children,  you  were  there.  We, possibly overzealous parents, definitely had the idea that collaboration with professionals was what was needed. We had many excellent ideas regarding our children's care - but the professional world wasn't listening! We had  a  hard  time  finding  professionals  with  the  time,  the interest, and - the guts - to be  our partners!  We weren't easy. We had hard issues to bring up.  Our children's well-being depended on it. But you really put your  money where  your mouth was.  You  told  us  that  if  we  were  interested in furthering discussion with professionals we could  come  and  speak  to your trainees at the DEC. That was unheard of - in the mid 70s parents DID NOT give talks to professionals.  I can remember that first talk so well - Judy Johnson, Nora Wells, Kathy Berry, and me. We were prepared to tell our life stories, raise 110 issues for discussion, and solve all the problems (and there were many, in those days) - in an hour! I remember so well going over this with you one evening in the old DEC waiting area - anything we wanted to raise was fair game you said. Your one prohibition to us was that we were not to say anything about clinic waiting times or the parking garage! That was a real beginning for us and gave us incredible confidence (possibly unfounded) and from there with your help we moved on to tackle the world.

You served  very  actively  on  the  advisory  board  for  our US Department of  Education grant  - our first funding. You had many ideas for us. You told us we should respond to all the requests we were getting to speak, this was important stuff - and the heck with what the grant said, that could be changed (this was news to us novices). Your hallmarks were that you were always supportive, you offered lots of ideas, you leveled with us and told us how you thought your colleagues would hear us (thus giving us an important chance for feedback BEFORE the fact), and you created openings and opportunities for us at times and places we would never have known of, let alone be invited to. You legitimized us.

In 1978 you invited me to attend the New England Regional Genetics Group meeting.  I didn't know anything much about genetics and certainly had no idea what this meeting would come to mean in my life. I couldn't come that first year but the next year I did.  From then on Marie Cullinane and I became the Consumer Concerns Committee which, as you know, has now expanded to include consumer representatives from each of the New England states.  With you as initiator, NERGG became the first of the regional genetic networks.  It was also the first to include consumers. And it is now the first in which a consumer (Victoria Odesina) is a co-director!  That's a very direct line from your actions. Two unexpected outcomes for me in all this - I got to chair the annual Allen Crocker Award for NERGG and pick out poetry and original art with you; and I'm now a member of the prestigious Human Genome Project Ethical Legal Social Issues Working Group!

From that DOE grant back in 1981 we went on to a long and continuing relationship with the federal Maternal and Child Health Bureau. They were our first health funders - important since our work was in health - and we were their first parents! (Of course it was no surprise that I met Vince Hutchins and first learned about MCH at a NERGG meeting.) Since that time MCH has totally embraced the concept of family-centered care which is now part of the enabling federal legislation for Title V.

You got me involved in all kinds of things I never would have expected. One of your habits which I learned early on was that as you conducted meetings you might without warning, say, "Betsy, what do you think about that?" especially when someone had made a controversial or even outrageous remark that you felt needed a consumer response. Unnerved at first, I learned never to daydream and to have my thoughts and opinions at the ready. By this simple technique (though I doubt you thought of it as such), you created an entree for me and for others who might have been too shy or unsure about speaking up. You got our consumer voices heard!

Before I got a car you were always a willing chauffeur, enabling me not only to get to meetings and conferences but also offering the chance for conversation and plotting (planning?)  and considerable support along the way. On one of those occasions on a trip out to the Heller School I remember you saying that you had to be careful where we parked because your car wouldn't go in reverse - a metaphor of some sort? You hadn't had an opportunity to take it for repairs but that didn't keep you from getting where you wanted! 

You have always been such a willing and enthusiastic partner in our planning initiatives - you've been first on our lists for brainstorming. I can never remember you turning us down for any request to meet, to talk, or help. And when we need support letters, your early morning housecalls are greatly appreciated and reasonably priced - a cup of coffee!

The thing that's stunning of course is the sheer number of groups with whom you collaborate. Certainly no one could call you narrow minded. The breadth of your interests is legendary; the depth of your involvement is without parallel. You have long expressed strong interest and support for the whole child and the whole family. And especially brothers and sisters! (No one who knows you will ever say siblings again!) Last August I listened while you gave an incredible gift to the families attending the 5P- conference.  You had spent the morning meeting with the brothers and sisters (in two age groups).  You obviously took notes and sometime - lunch? - you put it all together and shared it with the families.  The good things.  The funny things. The hard things.  You did it in a way that was incredibly supportive and that offered things to think about and next steps. 

You are not afraid to address hard issues.  When there is disagreement, controversy, or issues without clear direction - you are often the first to raise them and by expressing your own doubts or concerns you make it possible to acknowledge and address them. 

You often call yourself the "token doctor" on the unbelievably large number of committees on which you serve.  Perhaps, but a token of incredibly high value.  Allen, you have meant so much to me over these years and have been so instrumental in so many of the successes that, with other families, we've achieved.  What an outstanding friend, mentor, and collaborator!


With love, admiration, and respect 

Betsy Anderson