May 1, 2017
Disability Policy Consortium Weekly Update

 ,

Good Morning.

I have recieved quite a few reactions to my editorials over the last two weeks.  I think it is safe to say the Commonhealth program for Working Disabled Adults needs to be changed to encourage the pursuit of employment by people with disabilities.

Today, I have a new editorial about choice and how it relates to the services on which I depend.

We have an employment opportunity with the City of Boston, a couple of interesting news stories and a busy calendar section.

As always  happy reading.

John Winske
Disability Policy Consortium
Definition of CHOICE
 1: the act of choosing : SELECTION finding it hard to make a choice
 2: power of choosing : OPTION you have no choic
 3. 3a : the best part : CREAM Of the cavalry the king's own was the choice.b : a person or thing chosen she was their first choice
 4: a number and variety to choose among a plan with a wide choice of options
 5: care in selecting
 6: a grade of meat between prime and good

Editorial: Please, Do Not Speak to Me About Choice

More than once during the last year, while battling against dramatic changes in Personal Care Attendant (PCA) program, senior staff members at Independent Living Centers have indicated to me that these changes were a fact of life, "after all, you have chosen to be in the program and to accept public money" (Medicaid funds). This got me thinking about the words choice and choose.

I have written about the absence of choice in insurance coverage for people with disabilities, in the last several editorials. Now after hearing about my choosing to use the PCA program, my brain began whirling. I looked up the word choice in Merriam Webster dictionary on-line (note: in this case I had a choice of which dictionary to choose as there are several of similar quality to pick from).

In definitions 1 and 2 (see above) the definition mentions selection and the existence of options. Also, definition 4 speaks of variety of options. I think we can remove definitions 3 and 6 because we are not exploring supremacy and not discussing meat. Number 5 is somewhat relevant since it implies care in selection. So, per Merriam-Webster dictionary, we can lay out that choice is the selection of a one among several options. Further, I would argue that we should stick to viable options.

So, let's look at my participation with the PCA program. What are my options? Well.... there is the PCA program, and....... Well there seem to be three other options. I could try to line up some friends to deliver my care. Ask them to volunteer for a few years. But unfortunately, my friends like having a roof over their heads and eating, so they probably need money.

There is also the option of a nursing home, but to be honest I am not ready to remove myself from the outside world. I like my freedom to work, to determine what I want to eat and who touches my body.

Then there is a fourth option which is to remove myself permanently. But this seems too radical. I am not ready for a nursing home, so I am definitely not ready to check out.

I hope you are getting my drift. There exist no viable options to choose from. EOHHS does not seek to emulate Baskin Robbins where I have 31 options from which to choose. There exists only one option, the PCA program.

While I am at it, let me stress I love the PCA program. I am one of only a handful of people left who have used the program for more than 35 years. What I am fighting for is to maintain the integrity and the soul of the PCA program, Consumer Control and Community Choice. 
The changes we are fighting would destroy the PCA program as we know it. The program has worked for a very Republican reason; government has stayed out of the way. They have not sullied the program with an abundance of rules and regulations.

So please, don't speak to me about choice. Because if I had a choice, I would continue living my life hiring who I wanted, choosing what to eat, when to get up and which dictionary to consult when people misuse basic verbs.

John Winske
Net News:  Seeking the Strength to Accept My New Life in a Wheelchair 

WBUR had an interesting commentary by Chris Anselmo.   You can find it here.
Net News:  16 Year-old Artist is Deaf and Has Cerebral Palsy

BBC News had a short profile of a young woman, Tjili, who has Cerebral Palsy and is Deaf.  Her watercolors are beginning to draw international attention.  You can find the video here.
Employment Opportunity: Constituent Engagement Specialist

Boston Commission for Persons with Disabilities

Brief Job Description (essential functions of the job):

The Constituent Engagement Specialist will assist in developing and implementing a range of outreach strategies to raise awareness of the Commission on Persons with Disabilities, drive up diverse resident engagement and service usage, and help the City achieve its impact goals. Provides leadership for all engagement initiatives and forums, prioritizing a data-driven strategy that reaches and engages the most disengaged residents and neighborhoods. Helps inspire and shape the Commission's mission of engaging, advocating and serving the residents of Boston with disabilities, to create a thriving, healthy and innovative Boston. Duties are performed under the general direction of the Commissioner, reporting directly to the Commission's Chief of Staff. One of seven staff members of the Commission team comprised of the Commissioner, Chief of Staff, Architectural Access Specialist, Architectural Access Project Coordinator, Constituent Engagement Specialist, Constituent Services Specialist, and Staff Support Specialist.

Calendar:  Cocktail Reception DLC Honors

When:  Tuesday, May 2, 2017,  5:30 P.M. - 7:30 P.M.

Where:  Royal Sonesta Hotel, 40 Edwin H. Land Blvd., Cambridge, MA  02142

The Disability Law Center Honors

Frederick Wiseman
with the
Impact Award
Art that Changes Lives

50th Anniversary of Titicut Follies

Since 1967, Frederick Wiseman has directed 40 documentaries-dramatic, narrative films that seek to portray ordinary human experience in a wide variety of contemporary social institutions. His films include TITICUT FOLLIES, HIGH SCHOOL, WELFARE, JUVENILE COURT, BOXING GYM, LA DANSE, BALLET, CENTRAL PARK, BALLET, LA COMEDIE FRANCAISE, and CRAZY HORSE. He has directed a fiction film, THE LAST LETTER (2002). His films are distributed in theaters and broadcast on television in many countries.

For more information please visit  http://www.dlc-ma.org/fw/
Calendar: Boston Deaf and Hard of Hearing Assistive Technology Resource Fair

When: Wednesday May 3rd, 2017, 10:00 AM-2:00 PM
Where: Non Profit Center Community Room
89 South Street, Boston, MA 02111

Vendors and advocates will be on hand to demonstrate and explain the latest devices and resources in the areas of Deafness & Hard of Hearing

This event is free and open to all!

Please RSVP and request accommodations by April 12. Contact Keri Chamberlain 617-226-2634 or kchamberlain@eastersealsma.org

MassMATCH is funded by the Administration for Community Living of the U.S. Department of Health and Human Services and managed by the Massachusetts Rehabilitation Commission.

MassMATCH Assistive Technology Regional Center-Boston operated by Easter Seals MA provides device demonstrations and loans of the latest equipment to the general public.
Calendar: Boston Mayor's Commission on Disability Community Forum

When:  Wednesday, May 10, 2017, 2:00 P.M - 4:00 P.M.

Where:  Suffolk University Law School, Ground Floor 120 Tremont Street, Boston, MA 02108

Do you have concerns, questions, or comments on a disability issue?  We want to hear from you!
  • Provide input to the City of Boston's Annual Accessibility Agenda
  • Hear updates from Disability Commissioner Kristen McCosh
  • Meet members of the Boston Disability Commission Advisory Board
  • Make your concerns about accessibility known to City Officials
  • Network with Disability Community Friends over Free Food & Drinks
ASL and CART provided. This is a scent-free event.
To request an accommodation, contact us by May 1st at:
disability@boston.gov or call 617-635-3682 / 617-635-2541 TTY
For more information, visit boston.gov/disability.
Calendar: Walpole Fire Department Host:
Emergency Preparedness for the Deaf

When:  Saturday, May 20, 2017, 8:00 A.M. - 4:00 P.M.

Where:  Blackburn Hall, 30 Stone St., Walpole, MA 02081
  • Guest speakers
  • Hands on training for adults
  • Children's materials will be available.
  • This is a chance to ask questions and learn.
Come see, touch, get in Fire trucks, Ambulances, Police cruisers, and Police Motorcycles!
Come see equipment used by the Departments, ask questions!
K-9 police dog demonstration (including a takedown and drug sniffing)!

Talk with the representatives from:
Walpole Fire Department, Police Department, and EMS (Emergency Medical Services)
FEMA (Federal Emergency Management Agency)
Massachusetts State Police, And others

Lunch will be provided (12 noon) through generous donations from local restaurants and pizza shops.

If ASL Interpreters / Tactile / Close Vision / CART / CDI needed, Please Contact: John Buccieri, Jr. : johnbuccemt@yahoo.com

RSVP by May 5, 2017 Please.

Any questions Contact: Erik Bailey Cell: 978-289-8228 Email: erikbailey12@gmail.com
John Buccieri, Jr. Email: johnbuccemt@yahoo.com 
Calendar:  MBTA Access Advisory Committee Annual Summit

When:  Wednesday, May 24, 2017, 8:30 A.M. - Noon

Where:  Transportation Building, 10 Park Plaza, Conference Rooms 1-3, Boston, MA 02116 

Panel Discussion:  The Future of Transit Accessibility

Remarks by: 

Stephanie Pollack- Secretary & CEO, MassDOT

Brian Shortsleeve- Chief Administrator & Acting General Manager, MBTA

David Scorey- Chief Executive Officer & General Manager, Keolis

AACT meeting to follow at 1:00 PM. All are welcome!

The last day to register will be May 12.

Please do not hesitate to contact Janie Guion, AACT Coordinator, at 857-702-3658 or by email at AACT@ctps.org for help with registration or questions related to the summit. 


We look forward to welcoming you!
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