November 28 2016
Disability Policy Consortium Weekly Update


Last week got so many great messages about my Thanksgiving message.  Thank you so much for your kind words.

On Tuesday, we got very recieved news from the Massachusetts Executive Office of Health and Human Services (EHS) and MassHealth about substantial revising of the PCA Overtime rules.   As you know this has been a very contentious issue.  It has been at the center of advocacy efforts by DPC and many other advocacy organizations around the state.  As a result most of this issue of the DPC Weekly Update is dedicated to this topic.

We also have an Advocacy Alert on the Federal level concerning Electronic Visit Verification (EVV).  This will soon be a big item here in the Commonwealth.

As a person who has relied on a PCA for the last thirty five years of my life, I offer my personal profound thanks for all those who have joined the struggle on this issue.  
Until next week enjoy and as always happy reading.

John Winske
Disability Policy Consortium
DPC Editorial: PCA Overtime Rules Improved

On November 22, 2016, the Massachusetts Executive Office of Health and Human Services (EHS) announced new overtime rules which are a major improvement from the regulations which went into effect on September 1, 2016.  As readers of this publication know, the DPC and other advocates had roundly criticized the regulations and fought to get them repealed.

The new rules will allow any PCA to work up to 50 hours in a week without any prior authorization or permission. This up from 40 hours in the September 1 regulations.   Importantly, for time work beyond 40 hours weekly, the PCA's earn time and a half, under federal rules.

The new rules allow a PCA to work up to 66 hours in a week, if their consumer(s) qualify.  Under the new Continuity of Care standards, a consumer can be eligible for an exemption for several reasons including if they and the PCA have been together continuously for five years or more.  Exemptions for Continuity of Care last until the consumer's annual PCA re-evaluation.  You must receive approval for a this exemption.

There is also a category called Temporary Exemptions which can be approved by EHS.  It will allow a consumer to apply for their PCA to work more that 66 hours, in limited circumstances, such as while they hire a new PCA, or if one PCA will be on vacation or out because of illness or injury.

This set of proposed regulations is far better than the September 1 regulations.  This time around, EHS engaged in a thoughtful and sincere process with many stakeholders including consumers at the table.  (In the interest of full disclosure, Dennis Heaphy and I were the two consumer representatives).   

In many ways, the process was as important as the outcome.  We and all stakeholders had a seat at the table.  EHS officials listened to and utilized the information being given to them.  We were active participants in the process, unlike the first time around. As the saying goes, "If you are not at the table, then you are on the menu."

That said, the real kudos and thanks go to you, the advocates, who fought with everything you had to get the September 1 regulations repealed or changed.  You were tremendous as always, but this time you demonstrated a tenacity and persistence that was wonderful.  You were fighting for your lives and your health and it showed.  Further more, you were fighting for your PCA's who keep you well.

Thank you to ninety-five members of the Massachusetts House and Senate who signed on to a letter to the Governor opposing the September 1 regulations.

There is still much work that remains.  The regulations include a date of January 1, 2018 to begin Electronic Visit Verification (EVV).  This is deeply disturbing.  As always, we will keep you posted,  but for now breath a sigh of relief as one burden is lifted.

John Winske
Advocacy News:  Statement from EHS 
Regarding PCA OT

Dear Colleagues,

On September 1, 2016, MassHealth put in place new rules to manage PCA overtime. MassHealth has been working with PCA consumers and other stakeholders since then about managing PCA overtime. Based on the feedback we received, MassHealth has made important changes to the PCA Overtime Management rules including increasing the number of hours a PCA can work before an overtime approval is required to 50 hours per week as well as updating the overtime approval criteria along with other initiatives.  The complete list can be viewed here.

We have attached several documents that explain these important changes that will take effect on January 16th, 2017. This information supersedes and replaces information in letters, sub-regulatory guidance and FAQs on PCA overtime management issued prior to this date.

All official information about PCA Overtime management, including the attached documents, has been posted on the MassHealth website.

Please share information about this update freely.



Advocacy News: Joint Thank You Letter

November 23, 2016

Dear Secretary Sudders,

We are writing to thank you for listening to our concerns and amending the PCA management policy by increasing the cap to 50 hours/week and including a robust exemptions process that allows PCAs to work up to 66 hours for consumers with complex needs and other unique situations.

These changes to the original overtime policy will go a long way to protect consumers from institutionalization and/or reliance on the medical system to have their needs met. The new requirements also take into consideration the value of PCAs, both in the vital role they play with their employers, and as people of dignity needing to support their families.

In addition to the new requirements being a model for the country, the PCA overtime work-group is a model of collaboration between policymakers and advocates. In this regard, we look forward to continuing our work together to strengthen and expand the PCA program.
Thank you again for your leadership on this issue, particularly during this time of unprecedented change and increasing demands on the LTSS system. If you have any questions or comments please contact Rebecca Gutman,,


Becca Gutman
Vice President of Home Care
1199SEIU United Healthcare Workers East

Bill Henning
Executive Director
Boston Center for Independent Living

Jim Krudenier
Executive Director

John Winske
Executive Director
Disability Policy Consortium

Paul Spooner
Executive Director
MetroWest Center for Independent Living
Advocacy Alert:  PCA's Are Not Criminals On Probation 

Call Senator Warren, Senator Markey and Your Congressional Representatives!

Tell them to oppose Section 12006 of the
Tsunami Warning, Education and Research Act of 2015

On Friday, November 25 some members of Congress snack an amendment on to the Tsunami Warning, Education and Research Act of 2015. The amendment requires all states to monitor PCAs using Electronic Visit Verification (EVV). The vote will be taken early this week.

EVV will treat PCAs like people convicted of a crime who are on probation. Opponents of "big government" want to track the comings and goings of your PCAs using electronic tracking devices. For specifics about the legislation look at Section 12006, starting on p. 650 in this pdf

EVV is being messaged as a way to "improve the quality of services," when it is actually being put in place to achieve savings, based on the assumption of wide scale abuse of the PCA program. EVV seeks to achieve savings by squeezing the lowest income wage earners and vulnerable members of society without any consideration of how EVV undermines consumer control, sets up a potential "homebound" model of care (think about it as a virtual nursing home) and creates another reason for people not to become PCAs. The list could go on.

The National Council on Independent Living, National Disability Leadership Alliance and the National Council for Mental Health Recovery among others are working to oppose EVV. You can read the statement by NCIL opposing EVV

Closer to home, MassHealth has been gearing up to use EVV since last spring. It has gone so far as to include EVV in its new overtime regulations. While the new PCA overtime structure is to be applauded, Disability Advocates Advancing our Healthcare Rights (DAAHR) and other advocates are voicing our concern about EVV in Massachusetts and look to work with MassHealth to resolve the issue.

Fraud hurts everyone as does poor quality care. Implementing large-scale EVV to resolve fraud, is like using a sledgehammer to perform a surgery when a scalpel is required.

The first step in our advocacy is to oppose any laws at the national level that will require states to use EVV. If you have any questions, contact DPC, your local Independent Living Center or your Aging Senior Access Points (ASAP). Make sure you call today:
Sen. Warren 202-224-4543 or 617-565-3170
Sen. Markey 202-224-2742 or 617-565-8519

Dennis Heaphy
Calendar:   Film "Bottom Dollars"

The Disability Law Center and Disability Reframed:  A Community Film Series present:   Bottom Dollars

When:  Tuesday, December 6, 2016, 11 AM - 3 PM

449 Broadway, Cambridge, MA

Registration: 11 - 11:30am
Lunch: 11:30am - 12:30pm
Film Screening: 12:30 - 1:30pm
Panel Discussion: 1:30 - 3pm

Free Admission. Advance RSVP Required

Bottom Dollars is an hour-long documentary that exposes the exploitation of people with disabilities through personal stories and expert interviews. It also presents clear employment alternatives with competitive wages and community inclusion. Do we want all people to have a shot at a job for fair pay in their own communities, or do we want some people to be separated, exploited and robbed of their chance to seize the American dream for themselves? 

Panel discussion following the screening, with film Director Jordan Melograna, Sara Frost (featured in film) and DLC Director of Advocacy, Rick Glassman.

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

Disability Reframed: A Community Film Series is a collaboration of the Boston Mayor's Commission for Persons with Disabilities and the Cambridge Commission for Persons with Disabilities. Hosted by the Cambridge Public Library.

ASL Interpreters and Communication Access Realtime Translation (CART) have been requested.

Register & Request Accommodations by November 29, 2016

Fill out the registration form below, or contact Amanda if you have any questions.

To register go to: or 617-723-8455 x 123
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