November 27, 2017
Disability Policy Consortium Weekly Update


I hope you had a wonderful warm Thanksgiving Day.

This week I begin with an editorial about the things  for which I am thankful.  I would love to hear from you about why you are thankful.

Big news locally, the Bay State Council of the Blind and Disability Law Center have joined others in filing a Federal law suit against Hulu for a lack of accessibility.

On December 8th, the One Care Implementation Council will hold listening sessions in four locations, statewide, the same time.  Hope you can participate.

As always happy reading.

John Winske
Disability Policy Consortium
Editorial:  I Am Thankful For....

Over the course of the Thanksgiving holiday I was reflecting on the past year and about the things for which I am thankful. I thought I would share it with you.

I am thankful (knock on wood) for a healthy year. No visits to the hospital in 2017 and no major illnesses. It is obviously a testament to the PCA's who help me monitor my health, cleanliness and stamina. Also, a shout out to my great team at CCA who do a great job of knowing when to prod me to do what I need to do and then leave me alone until I call them. As with all good services they should be unobtrusive until you need them.

I am thankful to work with an exceptional team at the Disability Policy Consortium. I am surrounded by smart, dedicated and committed advocates. No one could ever ask for more than that. I am thankful to the Board of Directors for giving me the privilege of leading our team. I know plenty of people who hate what they do to earn a living. My heart aches for them, because nothing is as liberating as doing what you love.

I am thankful that we have beat back to attempts to deprive people in the U.S. of the healthcare they need to survive. Special prayers, thanks (that reminds me, I need to send a donation) to ADAPT. The bravery and tenacity of their members has been breathtaking and chicken soup for this soul.

That brings me to Senate Republicans. I am thankful for 
them including repealing the health insurance mandate in the tax reform bill. At least they are being honest and showing that more money for millionaires is more important than health care for millions of Americans. They are also demonstrating they believe they are mutually exclusive.

I am thankful that our testimony opposing Electronic Visit Verification (EVV) was taken very seriously. Although the staff at MassHealth still believe they are under a Federal mandate to implement EVV, the process has slowed down. While we await official word, I think it safe to say our outcry was listened to, it was heard and like a Thanksgiving meal it is being digested. Although we do not always agree, I am thankful that we have leadership at MassHealth that is approachable and values our opinion.

Most of all thank you to my fellow advocates with disabilities. You are beautiful and powerful. Most people will never understand, that living with a disability is not being brave. It is doing what you must to survive. It is almost primal in that we go into survival mode when we must.

The true bravery of living with a disability is when we attend public hearings and listening sessions and bare our souls. We talk about the personal issues that we would much rather keep to ourselves and our confidants. We talk often about issues that are intimate and personal to protect our right to live free of institutional care. We feel as if we are being forced to justify our existence. It is not the intent of those who hold the listening sessions, but to us it is a public disrobing. This is the true bravery of disability.

So now you know what I am thankful for. How about you? 

John Winske
Net News: Open Enrollment Periods 

The Affordable Care Act enrollment deadline is December 15, 2017.  To sign up online applications go to

This is also the open enrollment period for Medicare Part D plans and Medicare Advantage Plans.  You can learn more here.

The deadline for Medicare is December 7, 2017.
Net News:  Massachusetts Grabs Attention with Medicaid Drug Proposal 

The Washington Post had an article about MassHealth's  latest 1115 Waiver request from Medicaid.  The Baker Administration has requested the right to develop a drug formulary which could limit the drugs available under the MassHealth program.  If the proposal is approved then it is expected other States would seek similar authority.

It should also be noted that the DPC opposed this proposal in testimony before the legislature.  

The article did note that a legal challenge could also occur.  We will keep you posted on developments.

Net News:  597 Days and Still Waiting

The Washington Post had a disturbing article about the current wait times for Social Security disability hearings.  One estimate is that 10,000 people have died while on the waiting list for a hearing before a judge.  

Net News:  BSCB, DLC and Others Sue Hulu 

Boston, Massachusetts-A coalition of blind and visually impaired individuals and advocacy groups filed a nationwide class action today against Hulu to end the video streaming company's ongoing exclusion of blind and visually impaired Americans. The lawsuit-filed in the U.S. District Court for the District of Massachusetts-challenges Hulu's violation of the Americans with Disabilities Act.

Hulu, one of the largest online-streaming services in the country, offers thousands of shows and movies, including award-winning original content, to most customers at the click of a mouse. However, the company fails to provide audio description-a separate audio track that blind and visually impaired people need in order to access the exclusively visual content of a show or movie-for any streaming videos.

Because Hulu fails to include audio description tracks on any of its streaming content, blind and visually impaired individuals cannot independently enjoy Hulu's video streaming services. Audio description is a separate audio track that, when activated, provides a verbal description of visual elements on screen, especially in scenes with no dialogue. The audio description track plays between pauses in dialogue. Hulu boasts an extensive library of live TV and on-demand movies and series-including its Emmy-award winning original series, "The Handmaid's Tale"-but currently excludes customers who are blind and visually impaired.

In addition, Hulu's website and applications are not accessible to blind and visually impaired individuals who use screen readers to navigate the internet. A screen reader is software that converts the visually displayed content on the screen into audible, synthesized speech or outputs that information on a digital braille display.

The American Council of the Blind, Bay State Council of the Blind, and blind individuals brought this action to end Hulu's discriminatory business practices. Disability Rights Advocates (DRA), a national nonprofit legal center, and the Disability Law Center (DLC), Massachusetts's Protection and Advocacy system, represent these individuals and organizations.
Kim Charlson, President of the American Council of the Blind, said, "Movies and television are pillars of American culture. As delivery of such media transitions to video streaming services, it is critical that these platforms be accessible in order to ensure the inclusion of blind and visually impaired individuals in contemporary society."

Rebecca Williford, Senior Staff Attorney at DRA, said, "Hulu is owned by a collection of some of the most powerful companies in the entertainment business and is itself one of the nation's most popular online streaming services. Its utter failure to provide access to individuals who are blind and visually impaired is astonishing."

"BSCB members have been expressing their concerns about Hulu's lack of audio description for years now," said Brian Charlson, President of Bay State Council of the Blind, "and it is time that Hulu join with other industry streaming services out there and meet its obligations under the Americans with Disabilities Act."
"As forms of entertainment evolve, equal access must transition to meet industry innovation. Equal access means the ability to fully use and enjoy all aspects of entertainment, just like everyone else," said Christine Griffin, Executive Director of DLC.
Plaintiffs do not seek monetary damages, but seek only to achieve equal access to Hulu's services.

A copy of this press release and the Complaint can be found at nationwide-class-action-challenges-hulus-discrimination-blind-visually-impaired-individuals/
Calendar:  Transportation Speak Out

When:  Tuesday, November 28, 1:00 P.M. - 2:30 P.M.

Where: STAVROS, 227 Berkshire Ave, Springfield MA, 01109

Stavros and the Pioneer Valley Regional Coordinating Council are joining forces for this year's Transportation Speak Out. Last year, over 75 community members, agencies, and advocates gathered to share their housing stories. This year, we're looking to hear from you about transportation. Have cuts to transportation impacted your community? Have you been impacted by cuts to transportation and wish to share your perspective? Are you passionate about generating more funding for transportation within the Pioneer Valley? Join us! 

Come hear from Sandra Sheehan, Administrator PTVA, Mary L. Jenewin-Caplin, Director Greater Springfield Senior Services, Patrick Burke, Rider Representative PVTA Advisory Board, and more!  For accommodations, more information or to rsvp please contact Jennifer Lee at 413-256-0473 x 213 or
Calendar:  Hearing on Aversives Bill  (New Date

When:  Tuesday, December 5, 2017,  1:00 P.M.

Where:  Massachusetts State House, Room B-1

The Joint Committee on Children, Families and Persons with Disabilities will hold a hearing on H93 "An Act Regarding the Use of Aversive Therapy"

This is the aversives bill which would ban the inhumane use of aversives in the form of electric shocks to autistic and other developmentally disabled people.  We have been fighting this for over thirty years.  Many of you have shown up at the state house time and time again to fight this.  Unfortunately, we must do this once more.
To request reasonable accommodations email Carl Richardson, the ADA Coordinator at the state house, at least one business day (and preferably more) prior to the hearing, at  Explain what bill you are testifying for and the reasonable acommodations you require.

If you cannot make it that day, please email  your testimony. All testimony should include your full name, address and contact information, as well as any degrees you hold, affiliations, etc.
Calendar:  MBTA Public Hearing

When:  Wednesday, December 6, 2017, 1:00 - 3:00 P.M.

Where:  10 Park Plaza, Boston, MA

Judge King will be hosting a public meeting to discuss the MBTA's progress towards complying with the MBTA/BCIL settlement agreement and recent improvements to accessibility. Please join us to share any feedback you have.

Click the following link for more details, including how to request an accommodation.

Hope to see you there,  Laura.

Laura Brelsford
Assistant General Manager, System-Wide Accessibility
Massachusetts Bay Transportation Authority
Ten Park Plaza, Suite 4470
Boston, MA 02116
Phone: 617-222-1688
Fax: 617-222-4394
Calendar: One Care Implementation Council Listening Session

When:  Friday, December 8, 2017, 1:00 - 3:00 P.M.

Where:  Four Locations

  • UMass Center at One Beacon St. - 1 Beacon St., Boston
  • Health Policy Commission (HPC) - 50 Milk St., Boston
  • Worcester Public Library, 3 Salem Square, Worcester
  • UMass Center at Springfield, 1500 Main St., Springfield  

"Are you a One Care member? (CCA - Commonwealth Care Alliance or Tufts Health Unify)?

If so, we'd like to hear from you on December 8th in Boston, Worcester or Springfield

What is working for you? What is not?

Snacks and giveaways and a chance to meet others in One Care

WHAT is it?
A chance to tell the One Care Implementation Council (IC) about your experience in One Care. The IC provides support and input to the One Care program and includes One Care enrollees.

WHO is invited?
One Care members, guardians or family members.

WHY is this happening?
We want to hear how One Care is going for you.

WHERE is it and HOW do I attend?

1. You must register - Register here or paste this address in your browser

2. Please choose which location you want to attend. Each location has a limited number of seats so please register early!
Calendar: Audio Described Performance of the Nutcraker 

When:  Tuesday, December 19, 2017, 7:30 P.M.

Where:  Boston Opera House,  539 Washington Street, Boston, MA, USA | 02111

Tickets are $35.  Please mention the All-Access Performance when you call the Box Office at 617 695-6955.

The Boston Ballet is performing one of the greatest ballets of all time, an American holiday tradition, The Nutcracker, live to jam packed audiences.

This spectacular production of The Nutcracker is easily the greatest and best known ballet in America. Introduced many years ago by George Balanchine, this ballet by Pyotr Ilyich Tchaikovsky, is a phenomenal ballet that features an excellent combination of dance, music and choreography resulting in a must see performance this holiday season for both adults and children.
In This Issue
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Disability Policy Consortium
11 Dartmouth Street
Suite 301
Malden, MA 02148
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