October 31, 2016
Disability Policy Consortium Weekly Update


Happy Halloween.

We start this week with an editorial regarding the PCA Overtime issue.  The Governor apparently thinks that we don't matter and that he can ignore us.

We have an update on our session with Uber last Thursday.  We have some news items for you and several calendar items.
I hope to see you next weekend at our Disability and Intersectionality Summit.

As always, happy  reading.

John Winske
Disability Policy Consortium
DPC Editorial: Stop Ignoring Us Governor Baker

The Personal Care Attendant (PCA) Overtime issue has been going on now for several months.  The annoying part of this struggle is that we are basically being ignored by Governor Charles Baker.  On September 1, we had a gathering at the Governor's office and requested a meeting with him about the issue.  We were given a meeting with substitutes, his policy advisor and EOHHS Secretary Sudders.  Nearly four weeks ago, Paul Spooner, hand delivered a letter to the Governor personally requesting a meeting.   The lack of a response coming from the corner office has become downright insulting.

EOHHS has mishandled the PCA overtime issue from day one.  On July 29th, we sent a Freedom of Information Act request to EOHHS and MassHealth requesting data on PCA usage and costs over the past five years.  It is now at three months and counting.  We have been assured that a response was forthcoming. We're still waiting. 

Representative Kate Hogan organized a letter opposing the near elimination of PCA Overtime.  The letter was signed by 95 members of the Senate and House.   Still, we wait to meet with the Governor.
To date EOHHS has only put forward short term solutions that do not address the larger destabilizing effect of the overtime restrictions on consumers who rely on PCAs who have for years worked more than 40 hours a week with no overtime pay.  Exemption policies put forward by EOHHS reflect the overall lack of understanding of how consumer directed care works. Other solutions, including efforts to increase the supply of PCAs, will take time and do not address the immediate needs of consumers for reliable PCAs to meet their needs.

Here is the truth - the only way to increase the supply of reliable and qualified PCA's is to build the job into a career path.  For PCA work to be a career, the job must be full-time and yes more.  The union, 1199SEIU has done a good job at raising PCA pay to $14.12 per hour, with an agreement to go up to $15.00 per hour.

While this PCA rate is better, capping their work to 40 hours per week means a PCA can only earn $29.000 per year. This not a living wage in the Commonwealth of Massachusetts.  Many PCA's are single women and single parents.  How can they raise a child or children on $29,000?  The truth is they cannot.  Working overtime is not what most workers prefer to do.  They work overtime because they must, to survive.

By capping PCA hours at 40 per week, not only is the livelihood of these workers in jeopardy but also PCA employers are at significant risk of institutionalization due to a large number of PCAs who will have to quit and leave the person with a disability unable to find good, reliable replacements.  Their health will slowly deteriorate and, very likely, they will need to go into a nursing home.

Truthfully, we are being ignored by the Governor. EOHHS is withholding data that would allow us to make informed policy recommendations.  It is time for us to take our advocacy up a notch.  Our lives depend on it.    
DPC News: Summit Tickets Available

We are only five days away from the Disability and Intersectionality Summit.

The summit will be the first in New England to explore this timely subject.  It will be a great opportunity to explore the future of our struggles for inclusion, acceptance and social justice.

The speakers and their topics are:

Keynote: Heather Watkins "Have Cane Will Strut to New Disability Activism"

Lydia X.Z. Brown "Disability Justice Intersection with Racial Justice, and Queer/Trans Liberation"

Victoria Rodriguez Roldan "Crazy and Trans: Mental health disability and trans identity"

Shain M. Neumeier "For Your Own Good: Coercive Care in the Lives of Marginalized People"

Holly Pearson "Rethinking/Reapproaching Institutional Diversity: From an Intersectional Critical Spatial Lens"

Mickey Thomas "Whips and Chains Excite Me Too: Kink & Disability"

Jessica Gimeno "Breaking Down Barriers in Asian-American Mental Health"

Alisha Vasquez "(dis)Ability, Capitalism and Nation-States"

Vilissa Thompson "#DisabilityTooWhite: Disability Community And Its Diversity Problem"

Eddie B. Ellis, Jr. "Open Your Eyes"

Maria Hernandez (Conchita) "Being Disabled and Undocumented: Experience and Resources"

Lynx Sainte Marie "Further Beyond the Pavement: Disability, Healing Justice and Cultures of Care in Black, Indigenous, People of Colour Activist Communities"

This promises to be a noteworthy, thought provoking event. Don't get left out, get your tickets to what promises to be a great day here
DPC News: Accessible Transportation and Uber

Thursday was a cold rainy night, but that did not stop more than 80 people from gathering at the Transportation Building to meet with Uber and the MBTA to learn more about accessible transportation options.

Chris Taylor, the General Manager for Uber in Boston, presented a basic overview of the service and how it operates.  There were many concerns raised about the refusal of some drivers to  serve passengers with guide dogs and other service animals.  Mr. Taylor acknowledged the problem and reiterated the company's commitment to complying with the Americans with Disabilities Act (ADA).  

Mr. Taylor discussed some ways that Uber has launched wheelchair accessible service in other areas of the United States.

The MBTA presented their pilot program using Uber and Lyft to serve 400 RIDE passengers.  The program is completely voluntary and consumers can still use traditional RIDE service.

The forum was organized by Disability Law Center, the Boston Center for Independent Living Center and the Disability Policy Consortium.
Net News: Obituary for Lucia Perillo 

Lucia Perillo a poet who often wrote about living with Multiple Sclerosis recently passed away.   Ms. Perillo was a MacArthur Fellow and was a finalist multiple times for a Pulitzer Prize.  You can read about her here.
Net News: Early Voting Has Begun 

For the first time Massachusetts has early voting.  Please contact your local city or town hall to find out how to vote prior to November 8th.  Most of all please vote.
Calendar:  Our Space, Our Place Coder Class 

Our Space Our Place, Resilient coders and Microsoft invite middle and high school students who are blind or low vision to participate in an exciting computer learning experience.

As technology becomes part of all aspects of our life, it is important that as individuals who are blind we know how to both use and create technology.

What you'll do:
  • Learn what makes a computer work
  • Build your own website or app
  • Meet coders, video game makers and other professionals in the tech sector and explore career options in high-tech!
Learn Today - Prepare for Your Future.

To participate you must be a proficient user of a screen reader and/or magnification tool.

When: Saturday November 5, 2016

Time: 10:00 AM - 2:00 PM

Where: Tobin Community Center, Computer room, 1481 Tremont Street, Roxbury, MA

This group will meet the first Saturday of each month from November - March.

To register Call: (617) 459-4084

Email: President@ourspaceourplace.org
Calendar:  BCIL Annual Meeting 

When  Thursday, November 17, 2016, 6:00 P.M.

Where:  Transportation Building, 10 Park Plaza, Boston

In the past year we have advocated to protect Ride services and the PCA program, for a consumer voice in health reform, and for affordable and accessible housing. We've also again provided vital services to people with disabilities across Greater Boston.

Please join us as we look back on important successes and look ahead to another year of service and advocacy for independent living.

On the meeting agenda, after a light meal, will be brief business reports, a review of the past year, and the presentation of an award to a member who has been a strong advocate on health care issues. Our keynote speaker will be Dan Tsai, Director of MassHealth, who will address MassHealth topics.

If you plan to attend, please RSVP to Susan Smith at BCIL for planning and food purposes: ssmith@bostoncil.org or 617-338-6665, x232. Also, please let us know by November 9 if you'll need an accommodation.

Should you wish to obtain a proxy ballot for board elections if you are unable to attend the meeting, please contact Shawn Kelley by phone at 617-338-6665, x201 or at skelley@bostoncil.org.

Your support in the past and for the coming year is much appreciated!

We hope to see you on the 17th for a fun and spirited evening.
In This Issue
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