September 18, 2017
Disability Policy Consortium Weekly Update


Over the summer Charlie Carr has been working hard to build consensus around a response to the proposal by the Commonwealth of Massachusetts to implement Electronic Visit Verification (EVV).  Building consensus is something at which Charlie excels.  In this issue of DPC Update, we are pleased to release these talking points.  They are meant to assist you as you develop your testimony.  EOHS will soon be holding another series of hearings.  We urge you to attend and speak up.  

We have a guest editorial from Ray Glazier, a long-time PCA user.  We also have a press release from Community Catalyst regarding the latest proposal to repeal the Affordable Care Act.  Community Catalyst is a strong ally of the disability rights movement, and has provided important funding to the DPC and BCIL ensuring that people with disabilities are represented in health care discussions.

Of course I also want to remind you that the Eventbrite website for our Annual Reception and Awards Ceremony is now live.  You can buy your tickets, place an ad or make a donation here .  
As always happy reading.

John Winske
Disability Policy Consortium
Editorial:  DPC EVV Common Ground Group Talking Points

Over the summer, DPC convened a Common Ground Group of over a dozen MH PCA program experts who met twice with the purpose of identifying areas of common concern regarding the impending implementation of changes to the PCA program as required under the 21st Century Cures Act. The majority of members were PCA consumer employers with decades of personal experience who are deeply concerned that the MH electronic visit verification (EVV) proposals not only violate privacy rights, create uncertainty and potential safety risks, but will undercut the critical role of consumer control of PCA user/employers.  All agree that third party electronic visit verification EVV as currently proposed is an inappropriate and ineffective model to use for the consumer-directed PCA program and is more suited to home health agencies where the consumer is not the employer. The following areas of concern were identified and are provided for your consideration. We hope these will assist you in formulating your own comments in preparation for additional MassHealth listening sessions that are planned for this fall. 
Slow, thoughtful Implementation, listen to PCA users experience:
1. Allow time and thoughtful examination of the day to day difficulties these proposals will create for Employers and PCAs. We recommend MassHealth take a slow, measured, approach with opt in consumer trials until statewide mandatory roll out in January 1, 2019
  • PCAs and consumer employers should have the opportunity to opt in to the new EVV system in the initial EVV trial roll out. A statewide mandatory roll out should begin no earlier than January 1, 2019. The initial opt in phase should ensure ample time to address system issues. During this period and for the first year of statewide implementation, a backup system should be available. This phased in implementation period should utilize significant consumer/employer and PCA input, such as focus groups, stakeholder group feedback, and test processes to ensure best possible consumer outcomes.
Expand opportunities for diverse consumer input:

2. MassHealth should expand/open up the current MH EVV Stakeholder group and make process more transparent to individuals and communities.
  • Open additional seats to represent the diversity of the community; age, gender, race, geographic location, sexual orientation, type of disability, PCAs and surrogates.
  • Meeting minutes, work products, meeting notices should be regularly posted online in accessible formats and available in other languages upon request.
Flexibility is key to effective PCA Management:

3. Any changes to the system should ensure significant flexibility recognizing that individual circumstances may require variability in utilization of hours and overall PCA management.
  • PCA employers should be the ones to clock in & clock out their PCAs.
  • MassHealth should work with consumer employers and PCAs to identify alternatives or make modifications to electronic location verification technology to assure it does not pinpoint exact locations. This would reduce potential violations of privacy rights and avoidable safety risks associated with capturing, tracking, and storing identifying information by a third party.                
  • PCA employers should not be required to list out frequent locations where PCA services are provided.       
  • System must afford significant flexibility in the use of approved hours including night hours (NTA).
  • Flexibility must also include consumer employers' ability to use authorized and approved hours as they see fit, consistent with the program rules.
Limits on scope and use of consumer and employee data:

4. TPA/MH must not use any data collected for any other purpose than determining hours of service billed and should be destroyed once this purpose has been fulfilled. 
  • Require TPA to demonstrate and document processes used to protect personal identity data from breach and unauthorized use.
  • Define length of time data will be held by whom and where and inform PCA employer and PCA in writing.
  • Do not use billing hours for any other use such as developing algorithms to determine time by task by disability group or for any other purpose.
Ease of use and sufficient training is essential:
5. Sufficient optional training for consumer employers must be available, as well as for PCAs and surrogates.
  • PCAs, consumer employers and surrogates should all have access to training on the new EVV system including but not limited to in person and online training. 
  • All materials must be in fully accessible formats.
  • Alternative training should be available to address individual circumstances, such as disability, geographic location.
  • Consumer employers should be able to opt out of the system if the use of EVV technology would force them to need a surrogate.
Charles Carr
Editorial: Is EVV "Big Brother"?  

Earlier this summer, each consumer in the MassHealth PCA Program received a letter about the mandatory introduction of MyTimesheet, an Electronic Visit Verification (EVV) system for PCAs. Under this system to be phased in during 2018, PCAs must sign in and sign out via smartphone for each service period. The consumer then electronically verifies the hours and the GPS-tracked service location, which is automatically compared with service locations the consumer has pre-registered with the system.

MassHealth touts MyTimesheet's advantages over paper timesheets and the current web-based electronic timesheet submission process that many consumers find
cumbersome. No doubt they believe what they are saying about enhanced consumer control: Check out the carefully crafted 'Frequently Asked Questions & Answers' .

But many PCA Program consumers feel that the EVV system puts them and their PCAs on an electronic leash. A particular sticking point is the geo-tracking of PCAs and  consumers. Many consider this an egregious and unnecessary invasion of privacy, 'Big Brother watching over you.' In fact, there is a petition circulating to ask the MA Executive Office of Health and Human Services (EOHHS) to ditch this aspect of the EVV program.
Unfortunately Section 12006 of the federal '21st Century Cures Act' specifically requires that States implement "a system under which visits conducted as part of such services are electronically verified with respect to- ''(i) the type of service performed;''(ii) the individual receiving the service; ''(iii) the date of the service; ''(iv) the location of service delivery; ''(v) the individual providing the service, and ''(vi) the time the service begins and ends."

States that disregard this EVV requirement are penalized by a progressively larger percentage reduction of the federal reimbursement share for Medicaid PCA
and home health services. The upshot is that we probably need to learn to live with MyTimesheet, although consumers should have attended one of the Listening Sessions conducted around the state this summer to voice concerns. If you were unable to do
that, EOHHS invites email feedback at: EVVfeedback@State.MA.US.

Ray Glazier

Raymond E. Glazier, Ph.D. is a long-term PCA consumer, currently enrolled in the MassHealth PCA Program, who previously self-funded his services. He is principal of disAbility Research Associates LLC of Belmont, MA. Contact him with questions or  suggestions for PCA Corner at:
Employment Opportunity:  Data Assistant (Part-time)  

The Massachusetts Legal Assistance Corporation (MLAC) is accepting applications for a part-time Data Assistant to support MLAC's Director of Data and Policy Analysis in gathering and maintaining the data necessary to create detailed reports for several data-based projects which support MLAC-funded programs providing civil legal aid to low-income individuals and families threatened with foreclosure.


The Data Assistant will be responsible for:

  • importing electronic data and identifying and resolving inconsistencies in data and other data problems (sometimes through communication with legal services program staff);
  • consolidating data from reports and other materials;
  • supporting the development of data through outside sources including; and
  • supporting the development of or creating regular reports and materials.


The ideal candidate will have strong technical skills including facility with numbers, a high level of attention to detail, and substantial experience with data and databases.

Skills and Experience:

MS Office products proficiency is required with exceptional experience in Excel and solid experience with data and databases such as Access and Salesforce. Bachelor's Degree preferred.

Knowledge of and experience with legal services and/or human services is a plus, as is experience working with issues of low-income people and diverse communities.


The Data Assistant must commit to working at least 14 hours per week. Compensation, including prorated fringe benefits, is competitive, depending on experience.

To Apply

Interested candidates should submit a cover letter noting where they learned of the position and a resume in Word or PDF by Monday, October 2, 2017 to Danielle Hines-Graham, Operations Manager, at Please write "Data Assistant" in the subject line. No phone calls, please.
Net News:  Graham-Cassidy-Hailer-Johnson
Health Care Repeal Plan Would Leave Millions Uninsured and Gut Medicaid

September 13, 2017

Statement of Robert Restuccia, executive director of Community Catalyst, on legislation introduced today by Senators Graham, Cassidy, Heller and Johnson to repeal the Affordable Care Act and cut Medicaid.

(BOSTON, MA) -- "In a week where the Senate HELP committee continues open, bipartisan hearings to get input from governors and other health experts on ways to strengthen the health care market and improve the Affordable Care Act, Senators Graham, Cassidy, Heller and Johnson are moving the health care discussion backwards. Today, they introduced yet another ill-conceived proposal that would undermine health coverage for millions. It is the most destructive repeal plan we have seen to date.

"The Graham-Cassidy-Heller-Johnson plan would essentially eliminate ACA tax credits to purchase health care coverage and the funds that support Medicaid coverage for millions of low-income adults. This would dramatically increase costs for consumers, and lead to millions losing health coverage. It would also resurrect the already-rejected draconian cuts to coverage for seniors, kids and people living with disabilities, and it would roll back key consumer protections. The plan's proposed cuts to Medicaid would also have short- and long-term dire impacts on state budgets, as Massachusetts GOP Governor Charlie Baker cautioned in his opposition to the plan in testimony before the Senate HELP committee last Friday. Meanwhile, new polling underscores what we already know - that such proposals are massively unpopular with the public. Americans want Congress and the President to move on from repeal, to do what it takes to make the ACA work better for everyone and to strengthen our health care system.

"We urge members of the Senate to reject the Graham-Cassidy-Heller repeal plan. The American people have moved on, and most of Congress has moved on. It's time for all of our elected officials to move on from efforts to repeal the Affordable Care Act and work together in a bipartisan fashion to make our health care better and more affordable, accessible and equitable."
Calendar:  Assisted Suicide Hearing and Informational Meeting

1. Hearing on Assisted Suicide bills H.1194/S.1225

When: Tuesday, September 26, 10:30 AM
Where: Mass State House, 1st floor, hearing rooms A1 and A2

RIDE Users: Use drop off at 122 Bowdoin St., Capitol Coffee House

Joint Committee on Public Health

Two identical assisted suicide bills have been filed: H.1194/S.1225, "End-Of-Life Options Act." The DPC opposes this bill.

We work in cooperation with Second Thoughts Massachusetts. Contact John Kelly at Second Thoughts Massachusetts, for more information.

We are trying to get as high a turnout for the hearing, because it's one time the politicians have to pay attention to us. Your attendance will make a difference!

If you can, try to arrive at 10 AM so that we can find seats in the hearing room. It would be great if you could testify (three minute maximum!) or submit written testimony, which can be sent in any time between now and the first week of November. Written testimony can be submitted instead of, or along with, oral testimony. Because people only have three minutes to testify, some write longer written testimony.

Send written testimony to John Kelly, or you can go ahead and submit it directly to the committee chairs, Senate Chair Sen. Jason Lewis and House Chair Rep. Kate Hogan. Attachments are preferred, but text in the email body is also fine. A subject line could be "Opposing H.1194/S.1225".

Please ask every ally you know to come, but don't announce in a public forum that we want people to arrive an hour early. We don't want proponents to know our strategy.

We are confident that if enough of us come out, we will stop this bill!

2. Assisted Suicide Informational Meeting:
"DISABILITY, RACE, AND ASSISTED SUICIDE: Forming a Social Justice Coalition."

WHEN: Wednesday, September 20, 2017, 6 PM-8 PM
WHERE: 334 Mass Ave., Boston, 02115, Basement Conference Room.

Talk and discussion hosted by John Kelly of Second Thoughts MA and Anita Cameron, Director of Minority Outreach for Not Dead Yet.

For people of all ability levels who are opposed to assisted suicide or have questions about it. Learn about the discriminatory impact of assisted suicide laws as we prepare for the hearing on September 26. Topics include: Who supports, who opposes. Dangers of misdiagnosis, abuse, insurer profits, depression. Healthcare discrimination. Social justice arguments against assisted suicide.

Thank you,
John Kelly
Second Thoughts Massachusetts
Calendar:  Community Autism Resources Walk/5K Run and Family Fun Day

When:  Saturday, September 23, 2017, 9:30 A.M. - 1:30 P.M.

Where:  Francis Farm in Rehoboth, Massachusetts 

Community Autism Resources, an Autism Support Center serving 82 cities and town from the Greater Fall River area, to the South shore, Cape & Islands, will hold the 14th annual Hearts and Hands Walk/5K Run for Autism and Family Fun Day at Francis Farm in Rehoboth, Massachusetts on Saturday, September 23, 2017 from 9:30 AM until 1:30 PM. The Hearts and Hands Walk/5K run is the signature fundraiser for Community Autism Resources. All of the money raised through this event stays in the local communities and helps provide free services, supports and resources to children, teens, adults and their families living with Autism Spectrum Disorder. The Family Fun Day is a thank you to all for their support and efforts in taking action and raising much needed funds and awareness for this event!

There will be: Carnival style games, Bubble Creation station, Arts and Crafts, Face Painting, Two Bounce Houses, Amazing Raffle Items, Our Autism Store and so much more. You can still create your own fundraising team by going to

Community Autism Resources provides free programs and services for children, teens and adults with Autism Spectrum Disorder and their families. These include trips to the movies where the theaters are Sensory friendly; Ice-skating; Hayrides; trips to police and fire stations; "Twilight Tours" at Buttonwood Park Zoo; Grandparent brunches featuring various speakers discussing issues related to Autism Spectrum Disorder. CAR will be expanding its services to adults with Autism Spectrum Disorder this Fall by sponsoring the Gottschall Access Program, 3 year certificate Program at Bristol Community College. Community Autism Resources recently opened a new office in Brockton Massachusetts.

For more information on the Hearts and Hands Walk/5K Run, Contact Crystal Medeiros at 508-379-0371 X. 22 Oror1-800-588-9239 X. 22 or e-mail or you can go to our Website at:
Calendar:  ACB Conference Call on Roundabouts  

When:  Saturday, September 30, 2017, 2:00 - 4:00 P.M.

The American Council of the Blind Transportation Committee and the American Council of the Blind Environmental Access Committee are co-sponsoring a conference call on roundabouts on Saturday September 30 2017 from 2-4PM EST

Roundabouts are one of the newest types of intersections and they pose some major obstacles for the blind. Do you know what they are? Are they in your community yet? Do you want to learn more about them? Do you want to discuss current designs and pedestrian access? There will be a panel discussion including experts on what roundabouts are and what designs are best for those of us who are blind. (During the panel discussion lines will be muted so everyone can hear.)

After the panel has completed their presentations lines will be opened up for questions. Please join us and bring any questions you may have.

The phone numbers to participate are as follows:
605-475-4120, Pin Number: 818-9279

If you are a T Mobile Customer please use the number below:
605-475-2880, Pin Number: 818-9279

Our distinguished panel members include,

Janet M Barlow
Accessible Design for The Blind

Lucas Frank
The Seeing Eye

Bastian Schroeder, PE, Phd
Principle Engineer
Kittelson and Associates Inc.
Transportation Engineering/ Planning

Mike Goehring
Guiding Eyes
Field Representative

We would like to take this opportunity to thank all of them for their participation.

This notice is also posted on our website at:
In This Issue
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Disability Policy Consortium
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