Susan's Blog

Tuesday, November 24, 2009

Breaking Down Barriers to Innovation

Today I attended a summit of the Health and Human Services Agencies with the Massachusetts Governor, Deval Patrick. Held at UMass Boston, the summit gathered together about 300 people who work in or advocate for some sector of the population affected by the EOHHS (Executive Office of Health and Human Services) for example, people who work for Healthcare for All, for example, or the Massachusetts Society for the Prevention of Cruelty to Children). And me. There were one or two Simply Parents there, but mostly it was the agencies and vendors.

The first half of the summit consisted in speeches, from the Governor and a few others who wanted to make it clear that they need help making their government, EOHHS in particular, more responsive to the consumers (families like yours and mine). Randall Rucker, Executive Director of Family Service of Greater Boston gave a moving speech about his travels to Zimbabwe and the utter chaos and horror of life there (in 2005), and yet the small areas of human dignity and innovation he found that were evident everywhere. He used this as an example of how we in that room could build great new systems even in the bleakest of economic times. Then the Governor gave us a directive, which was to find barriers to innovation in the Health and Human Services arena; to discover ways to remove those barriers; and to name what is the next frontier of social services innovation.

One young man spoke up to talk about how he is a success story for DMH (Dept. of Mental Health). He used to be homeless and “out of his mind,” as he put it. He found his way to a program called Vinfen (which Nat has participated in for social outings) and he is completely on his feet, working, and apparently happy. He got the biggest applause, and deserved it.

A panel of people spoke about how to get money steered towards non-profit groups, particularly those that are innovative. A representative of SEIU was there, a union that has partnered with Personal Care Attendants in Massachusetts, to deliver better services in that area. My friend and neighbor Vanessa Kirsch was also one of these panelists, there to talk about her organization, New Profit Inc., which is all about non-profit philanthropy. Vanessa also happens to be married to US Senate Candidate Alan Khazei, which made me doubly attentive to what she had to say (Disclosure: I am a big Khazei supporter, though honestly I believe two of the other candidates, Martha Coakley and Mike Capuano would do excellent work as Senator Kennedy’s replacement. Alan, however, is the most dynamic, has the freshest ideas, is the most grass-rooted, and is extremely progressive in terms of the issues.).

I had the chance to meet the Governor and to give him my book, and to talk for a few moments with him about autism education — it turns out that just last week he had toured a big autism school in the Greater Boston area and he was very impressed with what he had seen there. He said he was glad to see a parent (me) here at this event. I don’t know exactly what he learned from visiting the school but I do know that for a governor at least to tour an autism organization is a step in the right direction for our state. Autism education being on the map in that respect can only be a good thing.

The meat of the program occurred after a brown bag lunch, where we broke into four groups, all of which were to address the Governor’s 3-point directive pertaining to the removal of barriers to innovation. This part of the summit enabled the smaller groups to go around the room listing what they thought were the biggest issues and then to brainstorm over possible solutions.

Several people stood up to talk about the issue of “silos,” whereby one agency does not communicate with the other and so there is confusion and duplication of effort. Others stood up to discuss the need to end the strict territorialism within the departments, to put the emphasis back on the consumers rather than on the budget. Others talked about the disincentives for serving individuals within their own homes and communities — that there is still an emphasis on workshops, dayhabs, and institutional living. I have nothing against those — Nat may have to use a dayhab program if he does not have fulltime employment, for example (and what are the chances he will?), but I definitely see the need for those who can to be given the support to live independently and on their own terms.

I stood up to talk about the parent perspective, namely that we parents often don’t even know where to begin. We don’t know who to ask what. We find that three years down the road we missed out on some major source of support or some important milestone. We have enough to wring our hands about in terms of not doing enough for our kids; but we need help at least knowing what to ask for and when. I suggested a parents’ “Cheat Sheet,” which would map out one step after another as a child transitions out of the school system and into the state system.

Afterwards we all reconvened to summarize what each group had come up with — some items were interesting to me, such as how the human service workers do not feel valued; how even the term “non-profit,” is defined by what it is not, rather than by all the things it does. There was an emphasis on focusing on real, relevant, and measurable results. On involving staff in decisions. On incorporating peers and families at all levels of the decision-making. And of course, of bringing those most affected to the table.

The Governor ended the session with an inspiring quote from Abraham Lincoln: The dogmas of our quiet past are inadequate to our stormy present.” But most inspiring of all was when he said, “Taxes are the price of civilization, but you need to make the case that the money will not be going towards the same old thing.”


Great post. Your efforts will benefit more than Massachussetts residents, as the issues are universal. I'm going to share your post with a friend who serves on the Minnesota Autism Task Force.

— added by carynsullivanscribe on Tuesday, November 24, 2009 at 5:40 pm

Thank you for sharing this important event. You are generous and wonderful with words. Thought provoking and challenging issues give us lots to ponder.
(your) Anon

— added by Anonymous on Tuesday, November 24, 2009 at 5:52 pm

It is tough to watch, when guys who should have job coaches and work well with them, can't have jobs because the funding that supports them gets cuts. Usually, that is one of the first to go. Going from child to adult services is tough, and it is good that you parents are getting a head start and researching early. Funding holds the key to everything, or almost everything. Something else that's important to your kids is to fade out as much staff support as possible, especially for jobs. If they can work at all independently, they stand a better chance of employment. If kids can work in groups of 2 or 3 to one staff, that also improves their job chances. It is unfortunate, because there is absolutely nothing wrong with needing supports; it is about money.
Keep on pushing, though Susan, your words and actions make a difference. It would have been nice if the governor had included the day program down the street, that is attached to "the big autism school" and been able to see first hand the individuals who will be affected by the budge cuts, even though those cuts are not in the hands of the governor alone; the legislature bears some responsiblity. Happy Turkey Day!!

— added by Anonymous on Tuesday, November 24, 2009 at 7:51 pm

So glad you were there to represent and were able to give Gov. Patrick your book. I hope he reads it. Thanks for taking time to advocate Susan!

— added by Judith U. on Tuesday, November 24, 2009 at 9:51 pm

It's a shame the government and this Governor aren't the least bit interested in the dangers of vaccines and the harm they have done and continue to do to many children. It's too bad the focus isn't on prevention and on the destruction that 30 plus vaccines given by the time a child is three can do rather than what institution we can put them in once they are 22. How you can personally "make peace" with those issues is puzzling to many.

— added by Anonymous on Wednesday, November 25, 2009 at 7:16 am

Thanks for the great post. I am lucky enough to have a friend who shared your site with me because I am a parent on Minnesota's legislative task force on autism. One of our charges is to find out what other states our doing so we can piggyback on each others work & not reinvent 50 times. I'm going to share your blog with others on our task force, and I'm looking forward to checking out your books as well.

— added by Jean on Wednesday, November 25, 2009 at 3:48 pm

Thanks for participating in this workshop and sharing your thoughts with the Gov. My recent experience with DDS has not been positive. I think it might be the fact that work is done and evaluated and then they realize that their budgets for the services they promised were cut, but don't say that to you.
Congrats on the new book.
Miriam M.

— added by Miriam Macht on Sunday, November 29, 2009 at 6:44 pm

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