September 19, 2016
Disability Policy Consortium Weekly Update

Charlie Carr and Paul Spooner at ACO Meeting
DPC Staff member Charlie Carr shares some thoughts at ACO Forum


This Tuesday is an important day for all PCA users and PCAs.  We need you to come and share with us your feelings about the decision of MassHealth to limit the hours of most PCA's. In the editorial this week I share with you my opinion on why the new regulations should be repealed.

We have information on a job opportunity at the Department of Public Health.  We also have an alert from DREDF.

See you on Tuesday at the State House! 
Have a good week and a s always, happy  reading.

John Winske
Disability Policy Consortium
Editorial: Why the PCA Overtime Issue is Critical 

To understand the importance of our struggle to fight regulations to nearly eliminate overtime for Personal Care Attendants, you have to go back to the beginning of our struggle for equality.  Here is a brief history lesson.

It all began with a group of men with spinal cord injuries who started living in the basement of the School of Theology at Boston University.  The same school that only a few years ago had help shape Martin Luther King, Jr.   Copying their brothers and sisters in Berkeley, California,  they launched the second Independent Living Center in the United States.  They had a fierce desire to be in the community.  They did not want to live out their  days segregated from the lives they lived before their injuries.   To live in the community, they relied on students to help them with the activities of daily living, because they rejected the medical model.

Some four decades later, nearly 40,000 of us with disabilities are standing on the shoulders of those paras and quads who camped out in that basement.  We rely on our PCA's to carry out the tasks which we cannot do alone. 

The amazing part of the PCA program is it is not immersed in the medical model.  It may be funded by Medicaid but other than a yearly re-evaluation by a nurse and the signature of our doctor, the soul of the program is the Independent Living Model.  We alone hire, train, schedule and yes fire our own staff.  We alone decide who we want to touch our bodies and perform our most intimate and personal care.  There are no certificates, no minimum skills required except those we deem important to us.   Most importantly, the fact that we make the decisions is what separates the PCA program from any other service model.  We decide who works and thus who gets paid, we have control.  

Now, EOHHS is usurping our role.  They know us only as a number and a diagnosis.  Now, they will decide who can have overtime hours based on a nebulous concept entitled "continuity of care".  

Permission will be required for a PCA to work for more than 40 hours for all PCA users. If a PCA works for three consumers at 15 hours each they will have to quit one consumer, or all of you need to apply for permission for the PCA to work overtime.

If a PCA continually works overtime, without the state's permission, they will be punished.  They may even be terminated.  Does that sound like you are the boss?  Does it sound like you will be the only one who can fire your PCA?  Not to me.  Seems like the "role of the boss" is getting very muddy.

This is not a minor change  This is not business as usual.  This change cuts to the heart of the PCA program.  It removes the soul from our Independent Living movement.  It forever poisons the dream of our progenitors in the basement four decades ago.

John Winske 
Employment Opportunity: Department of Public Health, Health and Disability Program

Program Coordinator II -


The Program Coordinator II will provide consultation, training, and technical assistance on disability and accessibility issues to Department of Public Health (DPH) staff, vendors, and partners in activities related to the Health and Disability Program's (HDP) grant on Improving the Health of People with Mobility Limitations and Intellectual Disabilities through State-based Public Health Programs.

This position provides programmatic support to the lead HDP Coordinator and the Principal Investigator, which may include presenting at/and or representing HDP on relevant work groups, meetings, and events. The successful candidate will serve as HDP's point person on grant activities related to physical activity for people with mobility limitations. This position is funded by a five-year federal grant from the Centers for Disease Control and Prevention (CDC). The Program Coordinator II would work with HDP staff to produce grant-related reports and deliverables.

HDP resides within the Office of Health Equity (OHE) and has been championing the health of people with disabilities since 1989, working to improve health and prevent secondary conditions for people with disabilities through strong collaborations with public health programs and services, the disability community, state agencies, and other relevant stakeholders. HDP's work focuses on policy and systems change while maintaining a focus driven by the disability community and a commitment to the practice of "nothing about us without us." HDP is strongly committed to reducing health disparities for people with disabilities statewide.
  • Coordinates and monitors HDP activities to ensure effective operations and compliance with established standards.
  • Reviews and analyzes data concerning HDP programs to determine progress and effectiveness, to make recommendations for changes in procedures, guidelines, etc. and to devise methods of accomplishing program objectives.
  • Provides technical assistance and advice to DPH personnel and others concerning HDP to exchange information, resolve problems and ensure compliance with established policies, procedures and standards.
  • Responds to inquiries from DPH staff and others to provide information concerning HDP.
  • Maintains liaison with various private, local, state and federal agencies and others to collaborate on projects, exchange information, improve systems and/or to resolve problems.
  • Performs related duties such as attending meetings and conferences; maintaining records; and preparing reports.
  • Provide on-the-job training and orientation for employees.
  • Develop and implement guidelines to accomplish HDP objectives and goals.
  • Review reports, memoranda, etc. for completeness, accuracy and content.
  • Confer with management staff and other agency personnel in order to determine program requirements and availability of resources and to develop the criteria and standards to program evaluation.
  • Evaluate HDP activities in order to determine progress and effectiveness and to make recommendations concerning changes as needed.
For more information please go to this link.
Advocacy Opportunity: Contact Congress to Oppose HR 3765 

According to Disability Rights Education and Defense Fund (DREDF), Congress will consider HR 3765, the ADA Education and Reform Act of 2015 this week.  As we mentioned a few weeks ago, this bill would require you to give businesses 60 days warning if they are violating the ADA.  It would also require you to tell them how to fix the problem.

Calendar: PCA Program Rally

Overtime, Not Nursing Homes! 
When:  Tuesday, September 20, 11:00 a.m. 

Where:  State House, Boston 
PCA work hours will be restricted. The authorization process for consumer PCA hours may change. Rally for the PCA program! Visits with legislators directly after the Rally. 
One story about the overtime cap: 

An elderly veteran, with a range of disabilities, including cancer, gets over 60 total PCA hours per week.  In response to the mailing he received from the state, telling him he can't have his one PCA work more than 40 hours/week, he said, "I might as well pack up my house and move into a nursing home." 

Rally sponsors include: DPC, BCIL, MWCIL, Stavros, Mass Home Care, 1199SEIU, IA, NE Arc, OCES, CLW, UCP of Metro Boston, CP MA, GSES, Enable, Inc., Easter Seals, NILP, more wanted.
For more information contact: 

Charlie Carr,,  
Bill Henning, 
Al Norman,
Jennifer Lee,, or 
David Correia,
Calendar: Disability Law Center Annual Benefit & Auction   

When:  Thursday, September 22, 2016, 6:00 - 9:00 P.M.

Where:  Royal Sonesta Hotel, Cambridge, MA

Join us and our Master of Ceremonies, Susan Wornick, as we honor our accomplishments and individuals who are working to support our mission.

For more information please go to .
Calendar: Getting Involved in Local Government 

When: Tuesday, September 27, 2016, 2:00 - 4:00 P.M.

Where: Boston City Hall, 5th Floor, Boston, MA 02201

Are you registered to vote? 
Do you know who your City Councilor is?

Come Join Us and Find Out!
  • Welcome by Mayor Walsh & City Officials
  • See ADA Accessibility Upgrades in City Hall
  • Find your City Councilor & Polling Place
  • Register to Vote & Learn About Early Voting
  • See Accessibility Features & try the Automark
Wheelchair Accessible * ASL *  CART *  Scent Free

For other accommodation requests, contact us
By September 14th at
or call 617-635-3682 / 617-635-2541 TTY

For more information, visit

Hosted by:

Mayor Martin J. Walsh 

Mayor's Commission for Persons with Disabilities 

Boston Elections Department

Calendar: One Care Information Sessions

MassHealth wants to help you understand the benefits of One Care. Join us at one of the information sessions listed below to learn more about this important program. 

Drop by to talk one-on-one with MassHealth, Commonwealth Care Alliance (CCA), and Tufts Health Plan representatives about One Care.

Worcester County:

Tuesday, September 20, 2016
1:00 p.m.-4:00 p.m.
Community Healthlink
68 Jacques Ave.
Worcester, MA 01610

Friday, September 23, 2016
11:00 a.m.-2:00 p.m.
Worcester Public Library
Banx Room
3 Salem St.
Worcester, MA 01608

For more information about these events, call Kate at 617-886-8280  or email us at:
Calendar: Our Space, Our Place Schedule

With the beginning of school comes the start of the Our Space Our Place after school and career exploration program for middle and high school students who are blind. Below are important dates.

Call us to register and to ask about transportation.
Phone: (617) 459-4084

Saturday September 17

Join us, MAB and Delta Gamma for a Walk, yoga and pizza.

Thursday September 22

Join us at the Tobin Community Center for the start of the after school program. Theater, dance, cooking classes, walking/running club, and much more.

Saturday October 1 from 10:00 AM - 2:00 PM

Sign up for the Coding Camp- Create your own website, meet professionals in the tech field.

We will meet the first Saturday of each month from October - March. Lunch is provided.

Saturday October 8, 10:00 AM - Noon

Have fun writing and reading. Join us every second Saturday of the month. Write a song, haiku, poetry, a play, express your opinion, and share your ideas on an issue important to you. Working on a piece of writing for school and want a little help? Join us every second Saturday of the month from October - June.

To register and to ask about transportation call:

Phone: (617) 459-4084
In This Issue
DPC Needs your Help!!! 
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The DPC uses the PayPal PayFast system for your tax deductible charitable donations. You do not need to have a PayPal account to use this system because credit card payments are also accepted.

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The DPC also uses the Causes program for recurring donations (as well as one time donations).  This is a great way to make a smaller monthly donation.
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Make check or money order payable to:

Disability Policy Consortium
11 Dartmouth Street
Suite 301
Malden, MA 02148
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