Editorial: Spirit of Independence? 

...or just too damn Independent?

My mother used to affectionately call me an "independent cuss" usually in the context of my response to some level of authority.  That must be the source of the subliminal messages I've been getting the last few days.   

Here, as Paul Harvey used to say, is The Rest of the Story.

The June 4 issue of the DPC Update included a mystery that baffled some people and a few took the time to ask.   The article was about a meeting on Integrated (managed) care for dual eligibles on May 31.   The article comprised space for 40 lines but only the first and last lines were visible and the rest of the space was blank.    

I had second, softer thoughts just moments before publication and changed the content.   Here's what it was originally planned for that white space.  

Disability Advocates Advancing our Healthcare Rights met with Dr. JudyAnn Bigby and 4 staff on the 31^st to discuss the DAAHR response to the Request for Information on Integrated (managed) Care for people on MassHealth and Medicare.  Somewhere past the middle of the meeting I returned from a day dream to hear the Secretary of the Executive Office of Health and Human Services saying "won't participate if I read about our discussions in Bill Allan's e-blast".

I was too startled to say anything other than "I sign my work" which is another way of saying "I stand by what I write." 

There was a clear message also conveyed to the audience of advocates in the room:  if Bill Allan wrote anything about our discussions, EOHHS would not continue to participate.  This was immediately confirmed by the response of a DPC staff person who said "I'll try to control my boss".  

I took Dr. Bigby's remark as an attempt at censorship, but moreover a threat to hold a public process hostage to meeting her expectations about who can say what about topics discussed.  There was also an inherent accusation in her statement that I have used the DPC Update to publish inside information or comments taken from meetings with EOHHS where people are discussing options.

I satisfied myself that the latter charge is not true by reviewing every issue of the DPC Update since I started editing it in October, 2010.  There weren't any editorial, advocate columns or other content that were not firmly based on the public record.  For example, the DPC Update for May 23 before had commentary on reactions to a proposal for focus groups with dual eligibles that ignored the advocate recommendations to have deeper discussions with selected population groups such as developmentally disabled individuals or people with mental health conditions.  I've had enough experience with market research to know that you can not get a "scientific sample" from random calling to fill 4 focus groups (40-50 people?) from a total population of 100,000 plus. 

Is the issue that advocates (or me in particular) are supposed to ignore statements from EOHHS staff that fly in the face of logic or what we know to be true, just to keep our places at the table?  If so, why is there even a table?

Now we get to the sad and even more troubling part of the story.  On June 2, I wrote Dr. Bigby asking to meet with her to discuss the "content, context and intent" of her May 31 remarks.  She and her staff responded with a telephone opportunity to talk which I rejected because of the importance of the issue and the fact that I wanted at least one witness with me.

There was a long period with no response and I reminded Dr. Bigby on June 24 of her so-called willingness to meet as published in the December 13, 2011 DPC Update.  That email prompted a phone call from a staff member.  Her staff and I played phone tag though Friday, July 1 at which point I informed Dr. Bigby that I reached the end of my patience for an issue I consider of very high importance since it was an attempt to limit my Civil Rights.

I also told Dr. Bigby that I was going publish this today and that I would publish her response unedited the Monday after I receive it.

So now you know "The Rest of the Story".

"Good Day!" 

From Elizabeth Toulan, Family Economic Initiative

REALITY CHECK:  No one can clothe a child on $40 a year!  

One Mother's Paradox

By Miriam Stein*

written 1982

I bought my nine-year-old daughter roller skates today

They cost twenty dollars

Two miles away children eat cereal for dinner

It's all their family can afford

My daughter doesn't understand why I'm upset

She's heard me describe the poverty and suffering I've seen

She's shared dinner table talks about human  misery

She's even sent money to help the starving  overseas

But she doesn't really understand

She's never missed school on a snowy day...

Because she had no boots

She's never been evicted...

Because there was no money to pay the rent

She's never gone to bed hungry...

Because cash to buy groceries had run out

And, she's never known a dejected mother...

Drained of hope and riddled by the guilt

Of being unable to provide the basics of life to her children

I want so desperately to teach my daughter

To be sensitive to inequities

To reach out to help others

But I also want her to enjoy the roller skates

Advocates Corner:  IL News

On the Calendar: Peer Support

from Ruthie Poole:

Metro Suburban Recovery Learning Center has two new peer support groups that are happening in Arlington at S.T.E.P.S. at 12 Prescott Street. The general peer support group meets on Tuesdays from 7-8 PM and the GLBTQI will meet on Thursdays from 7-8 PM beginning next week.

On the Calendar:   Recreation

See all events through December 2011 on our Web Calendar

Many events are open to veterans and their families, and most require -- or at least appreciate -- pre-registration. Contact the organization to confirm details for participation.

Some Paralympic Sport Clubs also offer sports "on demand" for people with disabilities on days that fit into their schedules. If you see a sport that interests you, contact the club directly or contact our Paralympic Sports in New England team for information or any type of help getting started.

Daily through August 31

• Sailing ~ Community Boating Inc. (617)523-1038, Charles River, Boston, MA
• Adaptive Rowing~Holyoke Rows & DCR, (413)320-3134, Jones Ferry River Access Center, Holyoke, MA
• Veterans Adaptive Sculling~Community Rowing, Inc., (617)779-8277, Charles River, Brighton, MA
• Adaptive Sports-10 Sports to Try~Spaulding Rehabilitation Hospital Boston, Bobbi Delaney, (617)573-7104, bsdelaney@partners.org

Weekly Programming

• Mondays & Thursdays @ 6 p.m.: Wheelchair Softball ~ Rollin' Red Sox; Ron Gendron, (401)215-6427, rgend@aol.com, Brockton VA, Wheelchair Softball Field, Brockton, MA
• Mondays @ 7 p.m.: Wheelchair Basketball ~ BayState Wheelers, Inc., Mike Kennedy: mikekennedy32@yahoo.com, YWCA Worcester.
• Tuesdays @ 5 p.m.: Waterskiing ~ Northeast Passage; northeast.passage@unh.edu, locations near Durham, NH vary.
• Wednesdays @ 2-6 p.m.: Waterskiing and Kayaking ~ New England Disabled Sports; (603)745-6281, Ext 5663. Ashland, NH.
• Wednesdays @ 6 p.m. - Kayaking ~ Boston VA; Kelly Cossaboom: Kelly.Cossaboom@va.gov or (774) 826-1955 or Brockton VA Pool, Brockton, MA.
• Thursdays @ 4:00 p.m. Cycling Training for All Abilities ~ New England Disabled Sports, New England Disabled Sports; (603)745-6281, Ext 5663
• Thursdays @ 5:00 p.m. Wheelchair Tennis~Northeast Passage, northeast.passage@unh.edu, Durham, NH
• Saturdays @ 10a.m.: Kayaking, Introduction~Northeast Passage; northeast.passage@unh.edu, Durham, NH

 ParalympicSportsNE@usoc.org 

(617)333-8033

On the Calendar:  Kayaking!

DCR Universal Access Program

Accessible Kayaking Program

Hopkinton State Park

Route 85, Hopkinton

For persons with disabilities, their family members and friends.

Equipment, instruction, and lifeguard provided. Participants must wear lifejackets.

$5 per person. 10am - 3pm

Thursdays July 7 - August 11

Pre-registration required:

Call Outdoor Recreation of Hopkinton at 508-435-3965

For further information on accessible recreation opportunities in Massachusetts State and Urban Parks

Call DCR's Universal Access Program at 413-545-5353 or go to www.mass.gov/dcr/universal_access

On the Calendar: Deaf day at Camp   

On the Calendar:  Tech Conference 

Products & Technology That Change People's Lives: Universal Design and Assistive Technology in Massachusetts