June 19, 2017
Disability Policy Consortium Weekly Update


These are very busy times for the DPC and our community.  Last Monday, we had our DPC Annual Meeting at Blue Cross Blue Shield of Massachusetts.  It was great meeting and fun seeing everyone.  Thank you to our wonderful host.

I want to remind you that on June 29th, we have the premiere of a film by Alexander Freeman.  Alex is an up and coming film maker with cerebral palsy.  The film "The Wounds We Cannot See" highlights the role trauma plays in mental illness.  The movie has already won Best Documentary at two film festivals this year,  It is being released the day after our event on iTunes, Google Play Store and Amazon.  We will have hot popcorn, candy and a question and answer session with Alexander Freeman.   See below to get your tickets.

The first round of hearings on EVV wrapped up this week.  More will follow.  We lead segment this week is the testimony of Jim Kruidenier of Stavros on EVV.

We have a job posting and lots of events in our calendar section.

As always happy reading.

John Winske
Disability Policy Consortium
EVV Update: Testimony of Jim Kruidenier 

There are many opinions on Electronic Visit Verification (EVV).  While we may not agree with all of his testimony, we believe this letter from Jim Kruidenier, Executive Director of Stavros, is thoughtful, reasoned and needs to be seriously considered.


Stavros Center for Independent Living, Inc. appreciates the efforts of MassHealth to develop a more efficient time sheet system for employers and their personal care attendants (PCAs). We understand the importance of making the program more efficient and cost-effective, and we happily support cost-savings initiatives when they maintain the principles of consumer control. And we commend MassHealth staff and stakeholders for the long hours they have put in to making the proposed electronic time sheet more responsive to how consumers actually use the program.

From the available materials and presentation, "MyTimesheet" may well prove to be a boon to many consumers and PCAs, leading to a simpler process and faster processing. For us, however, there are still several significant areas of concern.

Privacy of data - While we acknowledge statements by MassHealth staff that there is no interest in the data that will be collected by the new system, particularly the locations of consumers and PCAs, we know that times change and that regulators and policy-makers may someday wish to use the data to reshape the program or to track movements in such ways as to convert PCAs into home health aides without the expensive administrative overhead.

Ease of use - However detailed the specifications governing the development of the "MyTimesheet" app, there will still be persons - most likely elders - who will not be able to use the system consistently or at all. This includes individuals who do not now require surrogates, but will almost certainly need someone to help enter and approve the data. They are fully capable of self-direction, even with all the changes that have come at them over the years, but now they will need surrogates, which is both needless intrusion and something that could put them at risk of losing the program if a surrogate cannot be found.

Managing the program in challenging circumstances - For consumers with complicated medical needs and/or for consumers who live in rural areas (for Stavros, the western towns of Franklin, Hampden, and Hampshire counties), managing one's PCA program has always run up against the problem of a lack of PCAs who can be trained to do skilled work or a lack of PCAs, period. The challenges these individuals face can't be solved by web sites or meet-and-greet sessions: they confront a limited labor market with very few tools to make it work for them. While the new overtime regulations governing personal care attendants are perhaps the best in the nation, these still have blunted one of the most valuable tools these consumers had, and "MyTimesheet" threatens to compromise their abilities even further, leaving them vulnerable to dependency and health crises.


1. MassHealth needs a regulation that states that "MyTimesheet" data will be used for no other purpose than the payment of PCAs and that such data will be stored in HIPPA-compliant fashion and destroyed as soon as the laws governing payroll data allow.

2. MassHealth needs an opt-out provision for PCA consumers. We accept that such a provision would mean the establishment of eligibility criteria, but once these criteria are met consumers should be able to opt-out of the new system. This will protect individuals who are not able to use the new system (but have been fine with the existing timesheet system), as well as individuals who live in rural areas and/or have complex medical needs.

3. MassHealth should develop a "cash-and-counseling" model for eligible PCA consumers. Again, we acknowledge that criteria for eligibility will need to be developed, but certainly there are individuals who will benefit and thrive with such a program and who will lead happier and more independent lives free of most of the regulations governing the payment of PCAs.

Thank you for your consideration.

James Kruidenier
Executive Director
210 Old Farm Road
Amherst, MA 01002

The DPC would like to thank Jim and Stavros to permit the DPC to reprint this testimony.

John Winske
Employment Opportunity: Executive Director National Alliance on Mental Illness of Massachusetts 

NAMI Mass, an outstanding nonprofit grassroots education, support and advocacy organization, is seeking a dynamic new Executive Director in Boston. Please see our website at www.namimass.org.

The Organization

Founded in 1982, NAMI Mass is a membership organization comprised of individuals with mental health conditions, family members, friends, professionals and others who care about people with mental health conditions. There are 21 affiliated organizations located throughout the Commonwealth. One in five adults experience some form of mental health condition in any given year. NAMI Mass provides peer and caregiver education classes and support groups, distributes weekly electronic communications, advocates for effective public policy, and fosters close working relationships with collaborative coalitions to bridge the knowledge gap and reduce stigma.

NAMI Mass strives to improve the quality of life for all those affected by mental health conditions through education, support and advocacy. Free educational programs are led by volunteers with lived experience of mental illness or family members. We offer resources, insight, coping skills and genuine support for families and those in recovery. All volunteers are trained according to the best practices established by NAMI National.  

Duties and Responsibilities

Leadership - With the Board, establishes the strategic direction and carries out the mission.

Development - Leads the ongoing development and implementation of a comprehensive fundraising strategy to expand financial support. 

Marketing - Oversees media and marketing strategies to increase visibility, serving as the primary external contact.

Management and Supervision - Oversees the development and implementation of programs and policies, with responsibility for all administrative and supervisory matters in connection with operation and maintenance of the state office.

Relationship with NAMI affiliates, NAMI National, and external organizations - Fosters and maintains relationships with NAMI National and affiliates.  Forms and participates in related coalitions.

Advocacy and PR - With the Board, establishes policy positions and communicates NAMI Mass's position in interactions with State agencies and the Legislature, other advocacy groups, and committees.

Financial Management - Works with the Board Treasurer and the staff to develop an annual balanced budget and manages resources within budgetary guidelines; provides regular financial reports to the Board.

Board of Directors - Assists the Board in meeting its governance responsibilities. Attends Board meetings, reports on progress toward organizational objectives, and identifies appropriate committee structures and committee/Board members.   

To apply: 

Please send cover letter and resume to Susan Egmont at Egmont Associates, segmont@egmontassociates.com
Net News:  Melissa Ortiz appointed Commissioner, Administration of Disabilities, ACL

Melissa Ortiz was appointed by President Trump to serve as Commissioner of the Administration on Disabilities on June 12, 2017.

Melissa describes herself as a compassionate conservative who is enthusiastic about working with both sides of the aisle on behalf of Americans with disabilities. Throughout her life, she has been an active advocate for people with disabilities, working to ensure people with disabilities have the opportunity to fully participate in society. She is particularly passionate about improving employment opportunities and eliminating barriers - such as a lack of accessible public transportation - that can prevent people with disabilities from being able to work. Since earning a bachelor's degree in criminal justice and broadcast communications in 1989, her career has included teaching in the Tennessee public school system and a variety of roles in government and politics. In 2011, she founded Able Americans, and through that organization has worked as a consultant on disability issues.

A native southerner who has spent periods of her life in Atlanta, Nashville, Jerusalem, and New York City, Melissa now lives in Washington, D.C. with her husband Tony and her service dog, a dachshund named Annie Oakley."

In January Ms. Ortiz had a piece published on Time.com entitled " I'm a Woman with a Disability Who Voted for Donald Trump. Here Why..".  Some days later the following piece,  Disabled Trump Supporter Drowns In Toxic Sludge Made of Internalized Ableism appeared on Medium.com by Emily Wolinsky.

Representing a non-profit, of course, I have no comment.  I will let you decide for yourself.  
Net News: Amazon Video Announces Support for Audio Description

ACB and ADP are pleased to announce with Amazon Video the availability of AUDIO DESCRIBED movies and TV shows -- over 125 of them initially! The ADP website now lists 117 movies and 10 Amazon-produced TV shows, all with audio description tracks. Sample movie titles include:

· Alice Through the Looking Glass
· Batman v Superman: Dawn of Justice
· Fences
· Gravity
· as well as multiple offerings of Harry Potter, Jack Reacher, Mission Impossible, and Paranormal Activity.

In addition to movies, Amazon is offering ten TV shows, some with multiple seasons, including:

· Bosch
· Creative Galaxy
· Just Add Magic
· Man in the High Castle

Visit the ADP website for a complete list of described titles, supported devices, and access links. At the present time, all of the TV series and some of the movies are free to Amazon Prime members.

ADP Website Listing: http://acb.org/adp/amazonad.html

Calendar:  Governor Charles D. Baker's Council Aging in Massachusetts - Community Listening Sessions

June 21, 2017, 9:30 A.M. - 11:30 A.M.
Gloucester Senior Center

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.


* 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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Disability Policy Consortium
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Malden, MA 02148
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