June 26, 2017
Disability Policy Consortium Weekly Update

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Yowza, what a week.  Early in the week I thought this edition would be about the 18th anniversary of the Olmstead decision and its unfilled promise.  Then ADAPT hit the Capitol on Thursday and Holy Cow. Never have so many news outlets discovered our community.  We have a lot of information about their protests and the Senate bill.

A reminder that this Thursday we have the premiere showing of The Wounds We Cannot See.  Last week we picked up a very nice sponsorship from the Matthew V. Joslin Foundation.  This sponsorship will allow us to accommodate more consumers who have limited means, so please sign up below to join us.  

My editorial this week is about the closing of the Ruby Rogers Center and maybe a piece of our soul.  

We have a lot of coverage of ADAPT and a great article on EVV from Robyn Powell.

As always happy reading.

John Winske
Disability Policy Consortium
Editorial: But How Do You Document That?

The Ruby Rogers Center, of Somerville, shut down over the weekend.  The Center demonstrated that people who had lived experience with the mental health system could develop and self-govern an organization.  It was founded in 1985 by Judi Chamberlin and Dr. Dan Fisher.  As a peer support, drop-in center, it was a national model.  It was the progenitor of the current Recovery Learning Communities. 

The closing of the Center for the want of $200,000 per year of funding is a disgrace.  I understand the Baker Administration tried to offer a mechanism for preserving the Center, but the leadership of the Center was reluctant to engage in the bureaucracy that would have been required.  Early in recovery, people are reluctant to engage in any activity that demands paperwork and regulations.  This would be especially true for people with paranoia.  What is most disappointing is if just five of the 60-80 people that were being served were wind up in jail, the cost will exceed the annual cost of the Center.  But hey, at least then they are under the prison budget, and we always have more money for that.

More insidiously if just one former member spends a year in an inpatient psychiatric facility the cost will well exceed the annual cost of the Center.
By the way, I am including a link to Ruby Rogers obituary.  Every disability rights advocate should know her story and the groundbreaking case for which she was the lead plaintiff. 

It occurred to me that the closing of the Ruby Rogers Center and EVV share a common denominator, documentation and accounting for everything.  When the Center and Independent Living started, they were the epitome of informal drop-in have a cup of coffee and meet your brothers and sisters type of environment.  A place to learn about life and your rights from a peer.  A place to understand that you were Okay, but the world sure needed a lot of changing.  

Now as we increasingly document everything, we are losing something very valuable.  While I understand the need for accountability, sometimes a friend, with a cup of tea and a dry shoulder are far healthier than anything else.  While we can disagree about whether government should be involved in this type of less formalized services, we all should agree that informalized services are needed.

What is very strange about all this of course is that paperwork, documentation and the medical model's failure to meet our needs is precisely why ILC's and the Ruby Rogers Center were established.  Hell, that is why most non-profits were created.

You know, the funny thing is most non-disabled people think we don't like our lives as "crips" or PWD's. and that we all want to be better or healed.  Most of us love our lives.  What we despise is the continual documentation, and the perpetual justification of our existence.  That is what makes us miserable.

It seems we have come full circle.  Our ILC's and home grown services are drowning in paperwork.  Large medical conglomerates and mega non-profit community partners are going to lead the new health care system.  All of this is done to keep better records and document how carefully we spend government dollars.  We are told to behave like big private for-profit businesses.  Here is the rub my friends.  Bigger organizations have much higher overhead.  Money meant to serve the communities needs are diverted to shareholders, middle managers and CEO's.

We are also led to believe that bigger and better record keeping means less fraud.  Really?  Bigger means less dollars for direct services.  More cookie cutter, less personalized services and more chance for abuse.  And it means that fraud, when it does occur, is massive.  It means no one goes to jail, fines get paid that are small compared to the money that has disappeared.

I hate to say it but our services are at risk of losing their soul. 

But how do you document that?


John Winske
Net News: Closing of Ruby Rogers Center 

The Boston Globe had a story on the Ruby Rogers Center.   It is just disappointing that in these times of such high need, it came to this.
Net News: ADAPT Creates Havoc at Capitol

On the day the Senate came out with their version of health care reform, protesters with disabilities staged a "die-in" in the office of Senate Majority Leader Mitch McConnell's office to protest the Senate bill to repeal and replace the Affordable Care Act.

More than 40 were arrested.  Some were dragged violently from their wheelchairs.  Here is a Huffington Post article on the protest and arrests.  Here is another story from Time.com.

ABC News then did a great interview with some of the ADAPT leaders who were arrested.  The   Video is here.
 

A lot of people saw some great coverage of Stephanie Woodward with her hands behind her back in handcuffs, shot by DPC Social Media Maven Colleen Flanagan.  It was covered on hellogiggles.com here.

This is more press than I have ever seen a disability rights issue receive in my career.
Net News: So What Where the Protests All About

By now you are probably wondering what all the protests were for.  

Medium had a very good story by Rohmteen Mokhtari entitled The Misunderstood Medicaid Program Behind Yesterday's Die In.   You can read it here.

Then there was this excellent blog post by Erica Mones on Medicaid as a Disability Rights Issue.

The Senate bill makes deep cuts in the growth of Medicaid.  Medicaid budgets will tighten over time.  This is because instead of basing Medicaid spending on the growth in medical costs, it will be based on normal inflation.   As the gap grows Medicaid funding will buy less and less.  Remember PCA and Long Term Supports are optional services and not required under Medicaid thus they will be easier to cut.
Net News: Abuse Found at Judge Rotenberg Center......Again.

I am shocked, shocked to tell you that once again there has been abuses found at the Judge Rottenberg Center (yes I know I misspelled it, but it fits).  This article is from the Patriot Ledger.   You can read it here.
Net News: How Little Known Provision of Law Could Lead to Geo-Tracking of PwD's

DPC Board Member, Robyn Powell, Esq., had an article published in Re-Wire about EVV.  The story raises many of the concerns being raised by the DPC in meetings with the Commonwealth.  You can read Robyn's story here.
Net News: Problems with the RIDE

The Boston Globe ran a story on the rising number of complaints about RIDE services.  You may remember the MBTA has been trying to cut back on RIDE services and to lower the cost of the program.  Here is a link to the Globe story.
Calendar:  Governor Charles D. Baker's Council Aging in Massachusetts - Community Listening Sessions

June 26, 2017, 2:00 P.M. - 4:00 P.M.
UMass Medical Center, Worcester Campus, Aaron Lazare Research Building

July 25, 2017, 9:00 A.M. - 11:00 A.M.
Barnstable Senior Center

August 2, 2017, 10:00 A.M. - 12:00 P.M.
Elder Services of Berkshire County

Governor Charles D. Baker's Council to Address Aging in Massachusetts will hold listening sessions to hear ideas about how to make the Commonwealth the most livable state for people of all ages. Join us to make an impact on your community!

Specifically, we would like to hear about:
  • What factors make your community a great place to grow older?
  • How can we support families that include one or more older adults?
  • How can we promote more human connectedness (reduce loneliness, isolation) in communities?
  •  What are the top two issues or concerns that create barriers to people
  • being able to age well in their communities?
  • How can we accelerate innovation to support and connect older adults?
  • How can we change public perceptions about aging?
 If you are unable to attend please share your ideas by sending an email
to agingconversation@state.ma.us.

Reasonable accommodations for people with disabilities are available upon request.  Please
contact William Travascio at 617-222-7579 or at William.Travascio@MassMail.State.MA.US.
Calendar:  Come Learn About VIBRANT 

When:  Wednesday, June 28, 2017, 3:00 P.M. - 5:00 P.M.

Where:   Brookline Senior Center, 93 Winchester Street
Brookline, MA 02446

Do you know a person with low vision who could benefit from technology training? Please help spread the word about this opportunity!

Come learn about VIBRANT: Visually Impaired Blind Recipients Accessing New Technologies

Technology connects, empowers, and provides a path to freedom for people with disabilities. The Massachusetts Association for the Blind and Visually Impaired is committed to helping people with vision loss find new ways to access technology that helps them meet their goals.

Register for this event online here.

Speakers:

* Paul Saner - Massachusetts Commission for the Blind
* Sassy Outwater - Massachusetts Association for the Blind and Visually Impaired
* Mary Kay Browne - Massachusetts Council On Aging
* Robin Lipson - Executive Office of Elder Affairs
* Ruthann Dobek - Brookline Senior Center

VIBRANT can teach you to use assistive technology to:

* Access print information, hard-copy or digital
* Access electronic information
* Perform written communication tasks, including time management, note-taking, organization, paying bills and banking
* Access mobile navigation, transportation information, and apps
* Participate in leisure and recreational activities
* Accomplish daily living tasks, such as shopping, reading, social media, email, travel, planning, handling money, and obtaining information about a visual task

Contact us for an assistive technology assessment and to ask us about how we can help you.

VIBRANT is brought to you with assistance from our community partners including: the Massachusetts Commission for the Blind, Massachusetts Association of Councils on Aging, Highland Street Foundation, Boston Foundation, and with assistance from Memorial Foundation for the Blind in Worcester County.

About Us:

The Massachusetts Association for the Blind and Visually Impaired is a program of MAB Community Services. MABVI has been creating opportunities for blind and visually impaired individuals since 1903. Our experience allows us to forge strong community partnerships to meet the pressing need for high quality services and transform lives.
Calendar:   Save The Date!!!!!!!!!
An Exclusive Viewing of the Film
"The Wounds We Cannot See"  

When:  Thursday, June 29, 2017, 6:00 P.M. - 9:00 P.M.

Where:  89 South Street, Boston, MA

We are proud to present the premiere of a new documentary directed and produced by Alexander Freeman of Newton.   "The Wounds We Cannot See" is about one woman's struggles with mental health disabilities induced by trauma and violence.  The movie has been honored with several awards including best documentary at the 2017 Long Beach Film Festival.

Alexander Freeman is an award-winning filmmaker with cerebral palsy. His work focuses on disability and other social issues. Alexander is a graduate of Emerson College, where he majored in Film Production with a concentration in Directing. He will discuss his work after the film.

Please note the movie is captioned and we have requested ASL interpreters for the question and answer session.

Tickets can be purchased at Eventbrite.com or go to our Facebook Page.
Calendar: Free Training About Work For People With Disabilities
 
When:  Friday, June 30, 2017, 9:30 A.M. - 3:00 P.M.

Where:  Sheraton Springfield Monarch Place,  One Monarch Place, Springfield, MA 01144

9:30  - 10:00 am:  Registration
10  - 12:30 pm:      Training on SSI and SSDI, with Q&A
12:30 - 1:10 pm:    Light Lunch Provided
1:10  - 3:00 pm:    Training on Employment, with Q&A

Opening Remarks:

Christine Griffin, Executive Director, Disability Law Center

Training Presenters:

Linda Landry, Senior Attorney, Disability Law Center
Tom Murphy, Senior Attorney, Disability Law Center
Svetlana Uimenkova, Senior Attorney, Disability Law Center

Learn About:
  • Avoiding problems with SSI/SSDI if you go back to work
  • Your rights when applying for a job
  • Getting the accommodations you need at work

RSVP Required
Register by June 23, 2017

Register Online, or contact Amanda if you have any questions.

mail@dlc-ma.org or 617-723-8455 x 123

CART will be provided

** Please Note: Out of consideration for people with environmental illness and/or multiple chemical sensitivity, please refrain from using perfume or other scented products.
In This Issue
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