October 30, 2017
Disability Policy Consortium Weekly Update


Halloween is this week, the leaves are changing color, finally, and another year is fast drawing to a close.

The DPC's YESHealth project recently conducted a survey on Electronic Visit Verification (EVV).  We lead this week with a summary of the results of the survey.

We have an important job posting this week.  Long time disability rights advocate, Michael Muehe, recently announced his retirement as the ADA Coordinator and Executive Director of the Cambridge Commission on Disability.  The job is now posted.  We at the DPC will miss Michael and his incredible work.

We have several great stories from around the internet for you.

As always happy reading.

John Winske
Disability Policy Consortium
YESHealth Research:  EVV Survey Results

As many of you know, late this summer the DPC through our YESHealth project developed an online survey regarding Electronic Visit Verification.  The survey was available from July to early September.  We must note that the findings of the survey are not scientific.  We do however believe the results are fairly accurate in reflecting consumers general concerns regarding the upcoming changes to the PCA program.

Some of the survey results:
  • 80% were aware of the PCA program.
  • 65% felt that they would be able to learn to use EVV with the right education.
  • 38% don't have consistent access to the internet.
  • 74% don't use electronic time sheets.
  • 59% were very uncomfortable with MassHealth recording the time and location of PCAs when they start and finish their shifts.
  • 74% felt that the use of GPS tracking will change the program.
  • 85% felt that the change to the PCA program will be negative
Based on these findings we recommend the following:

Consumers and consumer allies advocate for MassHealth to:
  •  postpone plans to start EVV until a more person-centered model of EVV that protects consumer choice and control can be developed;
  • engage in broader consumer outreach before taking any further action;
  • address the "digital divide" that limits consumer access to consistent to internet connections, smartphones and tablets before implementing EVV;
  • work with consumers and PCAs to develop training materials and training opportunities needed to assist consumers and PCAs and using EVV.
It is significant to note that a second round of listening sessions has not been scheduled by MassHealth.  We believe that MassHealth heard the testimony of consumers and is thoughtfully reviewing the testimony.  But it also must be noted that MassHealth officials feel they must comply with federal mandates for EVV.

Full copies of our research summary can be found here in Word Format and here in PDF format.

Thank you to all who took the time to complete the survey.  We hope you will all consider participate in future YesHealth research projects.
Employment Opportunity:  Executive Director/ADA Coordinator Cambridge CPD  

JOB TITLE: Executive Director/ADA Coordinator Commission for Persons with Disabilities
DEPARTMENT: Department of Human Service Programs


CIVIL SERVICE: Non Civil Service


HOURS OF WORK: 37.5 hours/week, including some evening and weekend meetings

DUTIES & RESPONSIBILITIES: Reporting to the Assistant City Manager for Human Services and the Assistant Director for Administration, the Executive Director/Americans with Disabilities Act (ADA) Coordinator is responsible for overseeing the City's overall ADA compliance efforts, for supervision of the CCPD Disability Project Coordinator, for management of day-to-day operations of the CCPD office, and for building and maintaining a functional and responsive CCPD Advisory Board. Duties include, but are not limited to:

* Periodically review, and update, all City ADA policies and documents, including but not limited to reasonable accommodation policies, grievance procedure, ADA transition plan and self-evaluation. Publicize and implement the City's ADA policies and related documents.
* Serve as a resource of information and provide technical assistance to Department Heads, managers and supervisors regarding making employees with disabilities an essential part of the City's comprehensive workforce diversity efforts, and regarding the needs for physical and programmatic accessibility improvements, reasonable accommodations and the provision of auxiliary aids and services.
* Develop customized training programs on ADA compliance and disability awareness for a wide variety of audiences.
* Work with Department Heads, managers, and Personnel Department and with prospective and current employees with disabilities to plan and implement reasonable accommodations, according to individual needs.
* Conduct accessibility evaluations and make recommendations for City facilities, including municipal buildings, parking facilities, open space, parks and playgrounds and revise as necessary.
* Prepare annual written capital budget requests, through the City's capital budget process, recommending ADA accessibility improvements to city facilities, including the acquisition and provision of assistive technology as needed.
* Assist City staff in reviewing contractual arrangements, collective bargaining agreements, and other ADA-covered activities to ensure that such activities, contracts, and agreements fulfill the requirements for nondiscrimination on the basis of disability under the ADA.

* Provide technical assistance upon request regarding the requirements of the ADA and other federal, state, local disability discrimination laws. Develop customized training programs on ADA compliance and disability awareness for wide variety of audiences. Provide technical assistance, training, feedback and recommendations to Department Heads (or their designees) regarding the need for physical and programmatic accessibility improvements, reasonable accommodations, and the provision of auxiliary aids and services in programs, services and activities.
* Supervise and support Disability Project Coordinator on a wide variety of CCPD ongoing projects and office functions, including but not limited to: annual budget goals, I & R requests, development & distribution of bi-monthly newsletter, community outreach, taxi discount coupon program and participation on various interdepartmental committees and boards.
* Investigate complaints regarding purported violations of ADA and Massachusetts Architectural Access Board ("MAAB") rules and regulations pertaining to public and private property in Cambridge. Provide input to MAAB regarding variance applications.
* Coordinate efforts with CCPD Disability Project Coordinator and provide staff support for monthly CCPD Advisory Board meetings, including preparing agendas, publicizing monthly meetings, preparing monthly minutes and delivering monthly reports to the Board.
* In conjunction with the Project Coordinator, handle publicity and logistics, and provide coordination and administrative support for Advisory Board events, e.g. topical events, film screenings, board retreats, annual October employment events, etc.

Net News: Listen to Patients: We Are Experts in Our Own Care

Penelope Ann "Penny" Shaw is a DPC Board member.  This a very good piece by Penny about a recent visit to a walk-in center.  It is a tale many of us will bw able to relate to.  You can read it here.
Net News:  Immigration Detains 10 Year old Girl with CP in Ambulance

Rosa Maria Hernandez a ten year old with cerebral palsy.  She is undocumented and has lived in the United States since she was three months old. 

She was detained by Immigration and Customs Enforcement (ICE) while riding in an ambulance on the way to a hospital because of gall bladder problems.  She was allowed to have surgery, while ICE posted six officers outside her room.  After she was released from the hospital, ICE took her into custody where she is still being detained.  

David Perry in an editorial in the Washington Post argues that under President Trump fighting for disability rights means fighting for immigrant rights.  You can find his editorial here.  Do you agree?
Net News: NCOD Stresses Disability/Poverty Connection 


National Council on Disability Recommends Decoupling Eligibility for Cash and Health Benefits; Amending Small Business Act to Benefit Business Owners with Disabilities

October 26, 2017

Louisville, KY - The National Council on Disability (NCD) - a nonpartisan, independent federal agency comprised of presidential and congressional appointees - today releases an advisory report to Congress and the President on poverty and disability during its business meeting in downtown Louisville, Kentucky.

NCD's report addresses why people with disabilities are often destined to live in poverty and experience high unemployment despite existing federal regulations and public policies that were intended to improve their lives. The report asserts that the basic needs for people with disabilities go beyond what is covered in the official U.S. definition of poverty and that a new definition of poverty could help highlight the financial challenges facing people with disabilities and influence changes in policy.

"At a time when many respected scholars and policymakers are announcing plans to combat poverty, NCD wanted to shine a light on the unique ways in which existing policies hold back people with disabilities from economic self-sufficiency so those barriers can be addressed in any plans moving forward," said Clyde Terry, NCD Chairperson. "NCD focused on poverty in our report because it dramatically compounds the greatest areas of concern for people with disabilities."

The NCD report focuses on seven factors that are crucial for enhancing the economic independence of people with disabilities - education, employment, financial assistance and incentives, health care, long-term services and supports, transportation, and housing - and offers recommendations to policymakers in each area.

Report Recommendations:

A small sampling of the report's recommendations includes:

* Congress should amend the Small Business Act to expand the Small Business Administration's 8(a) Business Development Program to include people with disabilities as a presumed socially disadvantaged group.

* Congress should decouple eligibility for health care benefits from eligibility for cash benefits like SSI and SSDI to prevent people with disabilities from being forced to choose between getting a job or having access to health care.

* Medicaid reforms should safeguard access to home and community-based services waivers which are essential to promoting independent living, employment, and economic self-sufficiency for people with disabilities.

Net News:  Bay State Council of the Blind Releases Accessible Voting Survey Results

The Bay State Council of the Blind conducted a survey seeking information on the accessibility of voting in the Presidential election last November.  You can review the results of their research here.
Net News:  Autistic Advocates and Autism Parents Clash

NOSMag.org is reporting that autistic advocates clashed repeatedly with parental representatives at  quarterly Interagency Autism Coordinating Committee meeting.  As the advocates ramp up their push for self-advocacy, I would anticipate these battles will intensify.  You can read more here.
Net News:  NCIL and ADAPT Announce National Organizing Project 

National Council on Independent Living and ADAPT have announced a new organizing initiative funded by the Ford Foundation.  According to a press release " The National Organizing Project will continue these advocacy efforts in four key areas:
  • Support for emerging ADAPT chapters
  • A train-the-trainer program to train new and emerging ADAPT chapters in non-violent civil disobedience
  • Completion of the ADAPT "Piss on Pity" documentary
  • A full time Community Living Advocate, based at NCIL's office in Washington, DC, that will educate legislators on the benefits of community living and provide up-to-the-minute policy analysis for both organizations."
Calendar:  World of Careers

When:  Thursday, November 16, 10:00 A.M. - 2:30 P.M.

Where:  District Hall, 75 Northern Avenue, Boston, MA 02210

Our Space Our Place and its partners are very excited to announce the World of Careers Workshop.

Cost: Free

This workshop is for students and adults with disabilities who want to know more about the types of jobs in the working world and who want to figure out how to use their interests and experiences to get a job.
Attend the World of Careers workshop and learn
  • About the many types of jobs which exists
  • Meet people working today and ask them questions about how they got their job and what they do every day at work and
  • Work together with others to find out how your interests and skills can assist you to find a job
Light breakfast and lunch will be available.

Please let us know about your accommodation needs by Thursday October 26, 2017

To get more information:
Call: (617) 459-4084
Email: President@ourspaceourplace.org
To register for World of Careers workshop


District Hall

Reader's digest- Partners for Sight Foundation
Boston Center for Blind Children

Our Space Our Place, Inc.
Calendar: Award Winning Film Unrest

When:  Sunday, November 12, 2017, 2:00 - 4:30 P.M.

Where:   Regent Theatre,  7 Medford St., Arlington, MA

Sundance Film Festival and Boston Globe Award winning film Unrest.

Spread the word! Our organization is co-sponsoring an important film event on November 12th. We hope our members and their friends will attend. It's a select screening of UNREST, a Sundance Film Festival and Boston Globe award-winning love story about a mystery disease: ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). 

"When Harvard PhD student Jennifer Brea is struck down by a fever that leaves her bedridden, she sets out on a virtual journey to document her story as she fights a disease that medicine forgot." The film is beautifully made, winning awards and addresses both women's issues and disability rights. Join us for the film UNREST on November 12, 2017, 2-4:30 pm, at the historic 500-seat Regent Theatre, 7 Medford St., Arlington, MA.

"Riveting......equal parts medical mystery, science lesson, political advocacy primer and even a love story."
- The San Francisco Chronicle

Additional media attention for UNREST: NPR's Science Friday, Cosmopolitan magazine, the Today Show with Megyn Kelly, The New York Times, Variety, Hollywood Reporter, Los Angeles Times, Chicago Tribune and PBS's Tavis Smiley.

Film trailer here ( www.unrest.film/trailer)

Purchase tickets here 


Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is "all in your head." This film is an intimate, artful and unflinching look at severe chronic illness and, ultimately, a study on love and compassion. It invites scientists to ask new questions and medical providers to reflect on how they can best support patients and caregivers grappling with any lifelong illness for which there are no clear answers. 
In This Issue
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Disability Policy Consortium
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