August 29, 2016
Disability Policy Consortium Weekly Update


The deadline is drawing near for Speaker Proposals for our upcoming Disability and Intersectionality Summit. If you have a hot topic you wish to present, you have three more days to submit it.

We have a Letter To The Editor from Charles Carr, part of which is a history lesson on LTSS in the Commonweath.  There are several news stories including one on how to make sure you receive emergency notifications from the Commonwealth. 

We have a several reoccurring articles as we want to make sure people are prepared for upcoming changes to the PCA program.  Also, as a reminder, next week we will email you on Tuesday, because of our Labor Day celebration.  Say a special thank you to your PCA's on this holiday.
Have a good week and a s always, happy  reading.

John Winske
Disability Policy Consortium
DPC News:  Proposal Deadline for Disability and Intersectionality Summit

There are only three more days until the deadline to submit a proposal to the Disability and Intersectionality Summit.  This Summit grew out of a desire to broaden the narrative around disability by engaging in a discussion of intersectionality within the disability community.  The primary goal of this Summit is to feature a range of individuals with disabilities to present their own experiences, ideas and solutions to an audience that will include the greater disability community and general public.

The summit will be held on Saturday, November 5 from 9:00 am - 5:00 pm at the Nonprofit Center in Boston. People can submit proposals through 12:00 pm EST on September 1, 2016. You will be notified by September 26 regarding your proposal status.

The keynote speaker, for the event, is Heather Watkins. Ticket info will be coming out in September. If people have questions, you can contact Sandy Ho at You can learn more about the event and submit a proposal through this link.
DPC News: Rally for PCA Program

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,

DPC News: Applying for PCA OT 

We want to provide you with a direct link to apply for overtime for your PCA.  We also want to remind you that if your PCA is working for more than one consumer, they need to total all of their hours.  If they will exceed 40 hours per week, then at least one of the consumers has to apply for their PCA to work  overtime.

You can find the application here.  You will need to scroll down to the header Personal Care and then the sixth link says "Personal Care Attendant Overtime Approval Request Form [PCA-OAF]" with links for both pdf and word format forms.

After you fill the form out and forward it to your PCA Management Agency, we suggest you phone the Governor's Office at  617 725-4005 or 888 870-7770 (in state) to express your viewpoint on PCA overtime.
Net News: Emergency Alerts Can Keep You Safe

As you know, the DPC has a long history of working to improve access to emergency preparedness and services for people with disabilities.  Given the recent tornado in Concord (gulp!), we thought we should share this information from t he Massachusetts Emergency Management Agency (MEMA).

MEMA  encourages all residents of the Commonwealth to use their cellphones to receive emergency alerts and warnings about imminent severe weather and other threatening situations.   This past Monday morning, many residents of the Concord, Massachusetts neighborhood, that was hit by a tornado were, awoken fifteen minutes before the tornado hit by emergency alerting systems on their cellphones.   The advance warning allowed those residents to move to safety within their homes before the tornado hit.

Using the emergency alerting capabilities of your cellphone to be informed during emergencies is an important component of emergency preparedness.   Every family should have multiple methods for receiving emergency alerts, including at least one with an audible alert to wake you in the middle of the night.   "The tornado that struck Concord in the overnight hours on August 22nd while residents were sleeping was a reminder of the importance of receiving emergency alerts," said Massachusetts Emergency Management Agency Director Kurt Schwartz.  "Residents in the tornado warning area received alerts through the Wireless Emergency Alerts system on their cellphones. Additionally, alerts were sent to cellular devices loaded with MEMA's free Massachusetts Alerts app.  These warnings allowed residents to take shelter before the tornado struck."

Wireless Emergency Alerts - Wireless Emergency Alerts (WEAs) are short text-like messages sent to cellphones in an affected area.  WEAs are generated automatically when the National Weather Service issues warnings for the most severe weather conditions, including tornados, flash floods, and hurricanes.  WEAs also are issued for other types of emergencies, including AMBER alerts.  In Massachusetts, MEMA has the ability to issue WEAs for all types of imminent threats and hazards.  You do not need to subscribe to any service to receive Wireless Emergency Alerts; the alerts are sent to all WEA-enabled devices in an impacted or threatened area, and most newer cell phones are automatically enabled to receive WEAs.  MEMA encourages residents to check their cellphone settings to ensure that WEAs are enabled to be able to receive emergency alerts.

For iPhones:
· Go to Settings > Notifications
· Scroll to the bottom in the "Government Alerts" section and make sure that "AMBER Alerts" and "Emergency Alerts" are turned on.

For Androids
· Go to Messages > Settings OR you may have an "Emergency Alerts" icon
· Go to the "Emergency Alerts" section and make sure that "Extreme Alert", "Severe Alert" and "AMBER Alerts" are turned on.

For other cell phone models or for technical information, contact your cell phone carrier.

Massachusetts Alerts - The Massachusetts Alerts app provides weather warnings from the National Weather Service and emergency alerts and information from MEMA based on your location, proximity to an event or incident, and the preferences you select.  The free Massachusetts Alerts app is available for Android and iPhone devices.  To learn more about Massachusetts Alerts and frequently asked questions, visit:

For more information about types of alerting and information tools, visit:
Net News: Five Things You Should Know About Christine Griffin

The Boston Globe Business Section had a great profile on Chris Griffin, the Executive Director of the Disability Law Center (DLC).  Chris has and continues to be a strong supporter of the DPC.  You can read the profile here.
Letter to the Editor:  A Recent History of LTSS in Massachusetts 

Massachusetts has been aggressively pursuing federal funding to support its commitment to rebalance its Medicaid long-term care systems for over a decade. In 2004, University of Massachusetts Medical School collaborated with MassHealth in the Real Choices Systems Change grant and developed a "blueprint" to increase the use of home and community-based
services (HCBS) and reduce the use of institutionally based services.

Not long after that, Olmstead litigation forced the Commonwealth to de-institutionalize people with Developmental Disabilities and, eventually, Traumatic Brain Injuries among others.

In 2008, Gov. Deval Patrick formally released the Commonwealth's Olmstead Plan that instructed state government to move ahead and explore HCBS waivers across broader populations and for more people living in institutions. The state spent significant time developing
an 1115 HCBS waiver that significantly expanded LTSS but, unfortunately, was not funded.

Successful waivers were developed for people with Developmental Disabilities not long after that and, at the urging of the disability community, EOHHS applied for a Money Follows the Person (MFP) demonstration grant with the goal of transitioning 2,100 people out of nursing homes and qualified institutions. The provider community that consists of Independent Living Centers (ILCs) and Aging Services Access Points (ASAPs) has been successful in meeting benchmarks for community transitions and increased quality of life.

Another goal of MFP is to eliminate barriers in state laws, the Commonwealth's Medicaid state plan and state budgets that restrict the use of Medicaid funds to let people get long-term care in the settings of their choice.

The Department of Housing and Community Development (DHCD) in collaboration with EOHHS applied for and successfully received two Section 811 Project Rental Assistance grants that had people living in institutions as its primary target as well as 35 Non-Elderly Disabled (NED) housing vouchers, again set aside for people coming out of nursing homes. The two
programs naturally supported each other and provided increased housing options for people coming out of institutions; the 811 funding supported development of 190 integrated accessible units with subsidies and the NED vouchers were used in existing public housing authorities.

In 2014, EOHHS applied for a Balancing Incentive Program (BIP) grant that was further designed to continue rebalancing Medicaid expenditures and other state agencies to move away from institutional spending and further refine the infrastructure for LTSS for people with all disabilities and of all ages. The legislature developed a trust fund to administer the over $110
million award. It was at this point that Gov. Charlie Baker took office and appointed Marylou Sudders Secretary of EOHHS.

Over the past year and a half, there has been little movement toward furthering these goals. Despite its oversight responsibility, in fact, EOHHS has seemingly abandoned its commitment to LTSS by capping PCA hours at 40 per week and by doing so, is pushing this fragile system into chaos. The PCA regulation, regarding the severely constrained work limit, is going into effect in less than a week on September 1. This has left PCA users, who have PCAs that work over 40 hours for them or in combination with them and somebody else, scurrying for "exemption forms" to extend their current system and allow their PCAs to be paid overtime until their prior authorizations expire.

What happened to the commitment the Commonwealth made by accepting these federal grants to not restrict the use of Medicaid funding for LTSS that provides people with disabilities and elders the right to live in the least restrictive environment of their choice. Is the Commonwealth unwittingly in violation of the Olmstead decision?

Gov. Baker either doesn't see the writing on the wall or is prepared to let the chips fall where they may. Both are unacceptable and are completely contrary to the gains that the disability and elder communities have made in moving away from institutionalization into community living with LTSS over the past 12 years. It's time that he engages personally with community stakeholders who are going to be affected by this misguided policy and enter into a meaningful conversation that will avert an unnecessary crisis. 

Charles Carr
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.

Suffolk County:

Monday, September 12, 2016
9:00 a.m.-12:00 p.m.
Boston Health Care for the
Homeless Program
780 Albany St.
Boston, MA 02118

Saturday, September 17, 2016
11:00 a.m.-2:00 p.m.
Upham's Corner Health Fair
Strand Theater
543 Columbia Rd.
Dorchester, MA 02125

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: Training Working with a Disability

When:  Friday. September 30, 2016, 9:30 A.M. - 3:00 P.M.

Where:  The Cambridge Public Library, Lecture Hall
449 Broadway, Cambridge, MA

9:30 am - 10:00 am: Registration
10 am - 12:30 pm: Training on SSI and SSDI, with Q&A
12:30 pm - 1:10 pm: Light Lunch Provided
1:10 pm - 3:00 pm: Training on Employment, with Q&A

Opening Remarks:

Michael Muehe, Executive Director, Cambridge Commission for Persons with Disabilities

Christine Griffin, Executive Director, Disability Law Center

Training Presenters:

Linda Landry, Senior Attorney, Disability Law Center
Tom Murphy, Senior Attorney, Disability Law Center
Svetlana Uimenkova, Senior Attorney, Disability Law Center

Learn About:
  • Avoiding problems with SSI/SSDI if you go back to work
  • Your rights when applying for a job
  • Getting the accommodations you need at work
Register by September 23, 2016

Register Online, or contact Amanda if you have any questions. or 617-723-8455 x 123

CART will be provided

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

Hosted by: Disability Law Center and 
Cambridge Commission for Persons with Disabilities
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