August 26, 2019
Disability Policy Consortium Weekly Update

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We begin the newsletter this week with an editorial by our Executive Director, Colin Killick, calling attention to potential crisis in the New York PCA program.

We have two volunteer opportunities, including one assisting the MBTA with simulating the emergency evacuation of a bus.

Our calendar section is growing fast, a sure sign that summer is coming to a close.

Until next week, happy reading. 

John Winske
Disability Policy Consortium
DPC Editorial: The Crisis in NY is a Cautionary Tale

As we often point out in these updates, things for people with disabilities in Massachusetts are far from perfect. Even with our successful doubling of the AHVP program over the last five years, there is still far too little available housing that is affordable, accessible, and integrated in the community. Employment opportunities for people with disabilities remain frustratingly scarce, in part because there is no requirement under state law that workplaces are accessible. Healthcare, meanwhile, is still precarious for many members of our community-vital services like durable medical equipment and PCAs are available through MassHealth, but too often people who clearly need them must wait for months, cut through bureaucratic red tape, and obey intensely constraining requirements to keep these absolutely vital services.

However, for anyone who thinks we don't have a great deal to lose, recent event in New York State are a frightening wakeup call-and one that should motivate us to take action, both to defend our friends there and to be more vigilant here at home. 

This year, over the express objections of its own consumer advisory board and the protests of thousands of people with disabilities, the New York Department of Health has gone ahead with massive cuts to its PCA program, which take effect on September 1st. The cuts effectively reduce payments to "Fiscal Intermediary" organizations like Independent Living Centers that administer the provision of PCA services from approximately $500 per person per month to just $100 per person per month. All of the state's Fiscal Intermediary organizations have stated that they will have to either go out of business or radically cut back services in order to survive. Yet when asked how they anticipate covering the shortfall in care that would result, the Department of Health replied that "The state... is currently not aware of any access issues, particularly since there is [an] excess bed capacity in hospitals and nursing homes."

In short, New York State appears to be preparing to ship its 70,000 PCA users back into institutions. The echoes of Willowbrook are impossible not to hear.

New York State claims that by making these cuts, it will save $75 million. This strains credulity, given how much more expensive nursing homes are than PCAs, but arguing about cost is very much beside the point. In the midst of a healthy economy, in one of the wealthiest and most ostensibly progressive states in the country, the human rights of tens of thousands of people are about to be violated in the name of cost savings. If it could happen there, it could happen here. 

Today, we should take action on behalf of our friends in New York. The post  here by Michele Kaplan of the Center for Disability Rights lays out ways you can get involved, and I'd encourage you to send it to your friends and family there. 

Just as importantly, we need to be ready here to make sure this same kind of policy does not come to Massachusetts. Supporting organizations like DPC, Disability Law Center, and your local ILC will give us the capacity to fight back if we need to. Showing up and telling your story at forums for our Disability Advocates Advancing Our Healthcare Rights (DAAHR) coalition, and at MassHealth's own listening sessions, will make it clear to policymakers how vital PCA access and programs like One Care are. Talking to our legislators now about these programs and making sure they understand them will help us win them over if and when we need to. Above all, we'd urge you to pay attention and get involved. Don't take for granted what we have here in Massachusetts, and help us fight to improve healthcare for people with disabilities across the state. Continuing to push for things to get better is our best defense against things getting frighteningly worse. 

Colin Killick
Executive Director
Community News: DPH Listening Sessions on I/DD with Diabetes 

The Health and Disability Program at the Massachusetts Department of Public Health is inviting adults 18 and older with intellectual and/or developmental disabilities (I/DD) to attend a listening session in their community. The purpose of the listening session is to discuss and provide feedback on a Disability and Living with Diabetes health education video. 
 
The information obtained at the listening session will help inform the content of and the dissemination plan for the video and will be shared with other states and national partners. 
 
Listening session participants will receive $25 gift card.
The listening session will be held in September and October. 


If you have any accommodation needs, please let us know by August 26 by contacting, Kimberley Warsett.
Register by contacting: Kimberley Warsett at 617-624-5540 or Kimberley.Warsett@state.ma.us.
Volunteers Needed:  Museum of Science Exhibit   

The Museum of Science is looking for blind and low vision volunteers, ages 5 and up, to test prototypes of two computer science activities that teach basic computer coding skills.

The testing will be scheduled around August 27 or 28. We are flexible. If those dates don't work for you, call and we will see what we can arrange!

To set up a time to try the activities and give your input, please contact Katie Todd at 617-589-4235 or ktodd@mos.org.

Thank you!

Nora Nagle
ADA and 504 Accessibility Coordinator
Museum of Science
One Science Park
Boston, MA 02114
617.589.3102
nnagle@mos.org
M, Tu, Th, Fr 9-2:30
Volunteers Needed: MBTA Bus Emergency Evacuation Drills 

When: Wednesday, October 2, 2019, 8:00 AM - 1:00 PM

Where:  Bus Training Center, Arlington St., Charlestown, MA (approx. 0.2 miles from Sullivan Station)

The MBTA is seeking customers with disabilities to participate in a bus emergency evacuation drill on Wednesday, October 2, 2019. A small group of volunteer participants representing a variety of disabilities is needed to role-play as passengers for multiple simulated bus emergency incidents that require evacuation.  

Through this exercise, the MBTA aims to evaluate existing emergency procedures and further enhance employee emergency preparedness training, both of which are essential to the MBTA's commitment to providing safe and accessible service for all customers. If you or someone you know is interested in playing a critical role in this effort, please see below for details and contact information.

Note: Bottled water and lunch will be provided.

ELIGIBILITY: All eligible volunteers must be 18 years or older and available to participate from approximately 8:00 AM until 1:00 PM. 

In addition, all volunteers must agree to:

* Sign a participation waiver of liability form

* Abide by all instructions and direction issued by exercise staff (no improvising)

* Permit MBTA employees and/or other exercise officials to perform lift and carry techniques during simulated evacuation

* Be photographed/video recorded by exercise staff throughout the drill

HOW TO VOLUNTEER

If you would like to volunteer, please e-mail Jennifer Ross, MBTA SWA Customer Engagement Coordinator, at jross@mbta.com. Please include your name, your phone number, the nature of your disability, and the type of mobility aid you use (if any).

Offers to volunteer must be submitted no later than Friday, September 6.
Net News:  U.S. Access Board Releases for Public Comment Voluntary Guidelines for Onboard Wheelchairs  

The U.S. Access Board has released for public comment advisory guidelines for wheelchairs used on commercial passenger aircraft during flight. These onboard wheelchairs are provided by air carriers as a means of facilitating the transfer of passengers with disabilities to aircraft lavatories since personal wheelchairs cannot be used in the cabin. The Department of Transportation (DOT) has expressed its intention to supplement its regulations under the Air Carrier Access Act (ACAA) to include performance standards for onboard wheelchairs on covered aircraft. The Board is developing these non-binding guidelines as technical assistance to air carriers and manufacturers of onboard wheelchairs by providing an example of how to meet DOT's planned performance standards.

As indicated in a notice published in the Federal Register, the guidelines specify dimensions, features, and capabilities for onboard wheelchairs that will allow passengers with disabilities to be more safely and comfortably transported aboard airplanes in flight. In addition, the guidelines include criteria to allow the onboard wheelchair to fully enter the lavatory in a backward orientation and be positioned over a closed toilet, and for the lavatory door to be closed. This feature would afford those passengers who cannot independently transfer to the toilet to have privacy in performing non-toileting tasks related to personal hygiene or medical needs. The Board has posed a number of questions to the public about specific provisions in the guidelines but welcomes input on all portions of the document.

As part of a negotiated rulemaking to improve access for air travelers with disabilities, DOT has put forth plans to supplement its ACAA regulations and require onboard wheelchairs with enhanced functionality on aircraft with more than 125 passenger seats.

Related information, including instructions for submitting comments, is posted at www.regulations.gov (Docket ATBCB-2019-0002). Comments are due October 21, 2019. In addition, on September 12, 2019, the Board will hold a public hearing that will provide an opportunity to submit comments either in person or by phone. Further details will be posted on the Board's website at www.access-board.gov/onboard. Those who wish to provide testimony at the hearing should contact Rose Marie Bunales at (202) 272-0006 (voice) or bunales@access-board.gov by September 5, 2019.

For further details on the guidelines or the public hearing, contact Wendy Marshall at (202) 272-0043 (voice) or marshall@access-board.gov, or Mario Damiani at (202) 272-0050 (voice) or damiani@access-board.gov.

Public Hearing on Advisory Guidelines for Aircraft Onboard Wheelchairs
September 12, 2019, 9:30 - 4:00 (ET)
Remote attendance options will be posted at: www.access-board.gov/onboard
Access Board Conference Center
1331 F Street, NW, Suite 800
Washington, D.C.
Note: For the comfort of all participants and to promote a fragrance-free environment, attendees are requested not to use perfume, cologne, or other fragrances.
Net News: The Sexual Assault Epidemic More of Us Need to Talk About 

Ms. Magazine had a very good article by Joseph Shapiro (author of NO PITY: People with Disabilities Forging a New Civil Rights Movement) about sexual assault and people with Intellectual and Developmental Disabilities ( I/DD).  It is a major step forward for a mainstream publication, which serves young women with disabilities, to bring attention to this public health emergency.  You can read the story here.
Calendar:  DLC's 40th Anniversary Fundraiser   

The Disability Law Center invites you to

join us at our

40th Anniversary Event

on Thursday, September 19th

at The Royal Sonesta Hotel in Cambridge

from 5:30 - 7:30 pm

Celebrate with us as we debut our short documentary film

Wheels of Justice

A film that shines a light on how people with disabilities are fighting for their legal rights in a society that has yet to fully realize that these rights exist.

We will also be honoring

HDR, Inc. and Ernst & Young

for the work that they do to break
down actual barriers to access and
inclusion in the community and at work.

For more information or to purchase tickets please go to  https://www.dlc-ma.org/?na=v&nk=16928-4b12d1170b&id=59

The evening will include a performance by  Abilities Dance - Boston.
Calendar:  MSAD Biennial Conference

When:  Saturday September 28, 2019, 8 A.M. -10 P.M.

Where:  The Learning Center for the Deaf (TLC) & Early Education Center Building (EEC)
848 Central Street
Framingham, MA 01701

Bringing Communities Together

MSAD State Biennial Conference

FREE for day-time activities

*Keynote Speaker: Steve Florio, MCDHH Commissioner
*Guest Speaker: De'Lasha Singleton, Social Justice     Activist/Inspirational Speaker
*Registration Awards
*Community Forum & Round-table discussion
*Lunch (on your own / catered options will be available)
*MSAD General Meeting and Elections

$10 for Evening Entertainment

Evening Entertainment: Organizational Feud Game

Please submit request(s) for accommodations by September 15th to conferencechair@massdeaf.org
Calendar: 2019 World of Careers Program

Our Space Our Place, Inc. is announcing the 2019 World of Careers program. Please save the date.

World of Careers

Date: Thursday October 3, 2019

Time: 10:00 am - 3:00 PM

Location: Non Profit Center, 89 south Street, Boston, MA

We are very excited about this year. This workshop is for students and adults with disabilities. We will spend the morning meeting professionals and learning about different careers. The afternoon we will explore how our specific strengths can help us to identify careers.

Anyone interested contact:
president@ourspaceourplace.org

Cheryl Cumings
Our Space our Place, Inc.
www.ourspaceourplace.org
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