November 6, 2017
Disability Policy Consortium Weekly Update

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Wow, it really is November.  Soon we will be planning our Thanksgiving feasts.

This week, the DPC is pleased to release the first of three new issue briefs to be published over the next month.  This brief looks at substance abuse and people with disabilities.  We hope you find it helpful.  Please feel free to circulate it.

We have a lot of news from the local community this week.  There are numerous hearings and listening sessions on our calendar section this week as well.

As always happy reading.

John Winske
Disability Policy Consortium
DPC Research: New Call To Action - Substance Abuse and People with Disabilities  

Today, the DPC is pleased to release this Call to Action on Substance Abuse.  This issue brief is the first of three that will be released over the next month.  The paper was produced by staffer, Maggie Sheets. 

We are thankful to the Blue Cross/Blue Shield of Massachusetts Foundation which provided grant funding that made this research possible.  

Employment Opportunity:  Executive Director/ADA Coordinator Cambridge CPD  

JOB TITLE: Executive Director/ADA Coordinator Commission for Persons with Disabilities
DEPARTMENT: Department of Human Service Programs

JOB CODE/POSITION #: M034-701

CIVIL SERVICE: Non Civil Service

UNION AFFILIATION: None

HOURS OF WORK: 37.5 hours/week, including some evening and weekend meetings

DUTIES & RESPONSIBILITIES: Reporting to the Assistant City Manager for Human Services and the Assistant Director for Administration, the Executive Director/Americans with Disabilities Act (ADA) Coordinator is responsible for overseeing the City's overall ADA compliance efforts, for supervision of the CCPD Disability Project Coordinator, for management of day-to-day operations of the CCPD office, and for building and maintaining a functional and responsive CCPD Advisory Board. Duties include, but are not limited to:

* Periodically review, and update, all City ADA policies and documents, including but not limited to reasonable accommodation policies, grievance procedure, ADA transition plan and self-evaluation. Publicize and implement the City's ADA policies and related documents.
* Serve as a resource of information and provide technical assistance to Department Heads, managers and supervisors regarding making employees with disabilities an essential part of the City's comprehensive workforce diversity efforts, and regarding the needs for physical and programmatic accessibility improvements, reasonable accommodations and the provision of auxiliary aids and services.
* Develop customized training programs on ADA compliance and disability awareness for a wide variety of audiences.
* Work with Department Heads, managers, and Personnel Department and with prospective and current employees with disabilities to plan and implement reasonable accommodations, according to individual needs.
* Conduct accessibility evaluations and make recommendations for City facilities, including municipal buildings, parking facilities, open space, parks and playgrounds and revise as necessary.
* Prepare annual written capital budget requests, through the City's capital budget process, recommending ADA accessibility improvements to city facilities, including the acquisition and provision of assistive technology as needed.
* Assist City staff in reviewing contractual arrangements, collective bargaining agreements, and other ADA-covered activities to ensure that such activities, contracts, and agreements fulfill the requirements for nondiscrimination on the basis of disability under the ADA.

* Provide technical assistance upon request regarding the requirements of the ADA and other federal, state, local disability discrimination laws. Develop customized training programs on ADA compliance and disability awareness for wide variety of audiences. Provide technical assistance, training, feedback and recommendations to Department Heads (or their designees) regarding the need for physical and programmatic accessibility improvements, reasonable accommodations, and the provision of auxiliary aids and services in programs, services and activities.
* Supervise and support Disability Project Coordinator on a wide variety of CCPD ongoing projects and office functions, including but not limited to: annual budget goals, I & R requests, development & distribution of bi-monthly newsletter, community outreach, taxi discount coupon program and participation on various interdepartmental committees and boards.
* Investigate complaints regarding purported violations of ADA and Massachusetts Architectural Access Board ("MAAB") rules and regulations pertaining to public and private property in Cambridge. Provide input to MAAB regarding variance applications.
* Coordinate efforts with CCPD Disability Project Coordinator and provide staff support for monthly CCPD Advisory Board meetings, including preparing agendas, publicizing monthly meetings, preparing monthly minutes and delivering monthly reports to the Board.
* In conjunction with the Project Coordinator, handle publicity and logistics, and provide coordination and administrative support for Advisory Board events, e.g. topical events, film screenings, board retreats, annual October employment events, etc.

Community News:  BSCB and GDUM Secure Better Taxi Access for Passengers with Guide Dogs in Cambridge

Beginning in 2015, the Bay State Council of the Blind and Guide Dog Users of Massachusetts formed a task force to secure better taxi service for passengers who travel with service dogs in Cambridge. The issue was prompted by service denials that members traced to a taxi regulation that was at odds with the Americans with Disabilities Act.

Last year, the task force worked with the Cambridge Commission for Persons with Disabilities and Greater Boston Legal Services to improve the regulations, which are issued by the Cambridge License Commission.

We're pleased to announce that this summer, the City of Cambridge released new regulations that were significantly better!

Old Regulation:

A taxicab driver MAY refuse service to a person with an animal if the driver is afraid or allergic to animals and has declared this fear or allergy at their initial licensing. For those declaring an allergy, medical proof must be provided to the License Commission. A taxicab driver operating a partitioned vehicle may not refuse to carry an animal unless such fear or allergy has been previously declared as described above.

New Regulation:

Hackney Drivers who have a medically diagnosed allergy to animals, shall not refuse to transport a person with a service animal. Medallion owners shall provide such Hackney Drivers access to a Hackney Carriages with a partition.
Hackney Drivers shall not refuse to transport a person's possessions, including but not limited to, a service animal, a wheelchair, walker or other mobility assistive device or any item that can be stored in the Hackney Carriage. No extra charge shall be charged to such person for the transport of
a wheelchair, walker or other mobility assistive device.
No employee of a radio or dispatch service or similar service shall ask a customer whether s/he has a disability or uses a service animal, wheelchair, walker or other mobility assistive device.

A radio or dispatch service or similar service cannot refuse to dispatch a Hackney Carriage because of a passenger's disability and/or use of a service
animal, wheelchair, walker or other mobility assistive device.

The task force would like to thank Dan Manning of Greater Boston Legal Services, Michael Muehe of the Cambridge Commission for Persons with Disabilities, BSCB President Brian Charlson and task force chair David Kingsbury for their assistance.

Have feedback? If you take a taxi with your service animal in Cambridge, we'd like to hear how it went. Send comments, both positive and not so positive, to deann.elliott@gmail.com.
Community News:  Emergency Alert Notification Information from MCDHH Commissioner Reed

With the number of deadly hurricanes, fires, and storms that have damaged and devastated parts of the world, it is very important for everyone to have a plan for obtaining information in the event of an emergency. MCDHH's Jonathan O'Dell, Assistive Technology Manager/Training Specialist, has provided technical assistance and training for many groups and organizations related to safety and effective communication access. Below is a summary of resources which are shared as part of Jonathan's training and technical assistance.

-Having a smartphone is a significant advantage for obtaining alert notifications. An app called Massachusetts Alerts is available. The app is anonymous in the sense that it only knows that the device wearer is in a certain area based on the GPS chip in the phone, and passes on alerts relevant to that area in text format to the user, with selectable notification alerts ( badges, icons, tactile and ring ).

-Most larger towns have some sort of emergency notification system, which varies by community. Here is an example: https://www.everbridge.com/product/mass-notification/. Residents should make an effort to reach out to their police department and find out what system is being used in their community, and how they could benefit from it. As an example, because of the power plant, Plymouth has a very specific system including residence notification and an evacuation route.

-Not all communities have such programs set up. At a Marlboro Police Department event, police were encouraging Deaf citizens to provide contact information so that the police can proactively notify these individuals in the event of an emergency.

-Almost all significant alerts are captioned on television and, increasingly, on computers and mobile devices as well. News apps provide the option to receive breaking news and weather alerts, IF one grants permission for push notifications during the app installation process.

-The MEMA app has routinely updated weather, fire weather conditions, snow emergencies, etc.
http://www.mass.gov/eopss/agencies/mema/be-prepared/be-informed/massachusetts-alerts-app-faqs.html

-MCDHH has worked with the Governor's office and MEMA to provide ASL interpretation for emergency notifications, and there's also the Emergency Broadcast System and IPAWS at the federal level.

-Having a smartphone really is important. Text communication may be the only way to reach anyone during an emergency when voice and data lines are impassable due to call volume, as happened on 9/11 and also at the Minneapolis bridge collapse. Soon, Text to 911 will become a reality as well, providing another form of emergency connection. The State 911 Commission can provide information on reverse 911 and text notification. https://www.mass.gov/orgs/state-911-department

- In Boston and some other cities, the Mayor's office seasonally distributes community reminders ( via regular mail) advising people to prepare for inclement weather. These reminders include advising people to check on neighbors who may be disabled or elderly. People who are Deaf and Hard of Hearing should consider getting to know neighbors who can be a source of information in event of major power failures or disasters.

- MCDHH's contracted Deaf and Hard of Hearing Independent Living programs ( DHILS) are a statewide network of programs with staff who can assist Deaf individuals with understanding their best options for safety alerts. The DHILS providers are The Center for Living and Working ( CLW), DEAF, Inc, and Viability, Inc.

-People do need to be self-reliant to a very large extent, which means preparing for foreseeable conditions and hazards. With winter approaching, we should all be prepared for snow storms and ice storms and power outages, and be ready with generators, battery chargers, power inverters, etc.
Net News: Oklahoma Notifies 20,000 Consumers it is Ending Home Care Waiver Program

According to multiple news outlets, the Oklahoma Departmant of Human Services notified 20,000 consumers that it is ending it's Home Care Waiver Program.  The State has noted that up to to 10,000 of the consumers may be eligible for nursing home care.  Of course, it doesn't have enough nursing homes to shelter those affected so, good luck and have a nice day.

By the way the end date for services is November 30, 2017.  Guess this is the OK version of Happy Holidays.  You can read more here.
Calendar: Listening Session About Medication Switching  

When:  Monday, November 13, 2017,  5:00- 7:00 P.M.

Where:  Health Policy Commission, 50 Milk Street, 8th Floor, Boston

The Special Commission to Study Switching Medications is hosting a Listening Session to seek input from the public to inform our report and recommendations on non-medical medication switching for the Legislature. The goal of the Commission is listed below:

The commission shall investigate and study several areas including, the frequency by which patients are switched from prescription medications to other medications for non-medical reasons and without the consent or notification of the patients' prescribing physicians; the frequency of a health provider prescribing an alternative drug in response to changes in health plan policies mid-year for non-medical reasons; evaluating the role of financial incentives to pharmacists and prescribers in prescription drug switching decisions, including fee, incentive or other contractual reward for choosing a drug alternative; determining the total cost to the commonwealth when individuals are switched from prescription drugs that have been safe and effective, including increased use of services, emergency rooms visits, inpatient hospital stays and outpatient office visits; and identifying the patient populations most impacted by and vulnerable to being switched from prescription drugs for non-medical reasons.

We welcome all members of the public who wish to share their ideas with us. We have requested Communication Access Realtime Translation (CART) services and American Sign Language (ASL) interpretation for the meeting. Other Reasonable Accommodations for people with disabilities are available upon request. Include a description of the accommodation you will need, including as much detail as you can. Also include a way we can contact you if we need more information. Please allow at least two weeks (14 days) advance notice. Last minute requests will be accepted, but may be impossible to fill. To request accommodations, email ehs-publications@state.ma.us.

You may submit written testimony by November 13, 2017 by emailing ehs-publications@state.ma.us. Please submit electronic testimony as an attached Word document or as text within the body of the email and type "Medication Switching" in the subject line. All submissions should include the sender's full name and address. Persons unable to submit electronic testimony should mail written testimony to EHS/MassHealth Publications, 100 Hancock Street, 6th Floor, Quincy, MA. 02171.

This event is a scent and fragrance free event. Please refrain from wearing fragrance products such as cologne, perfume, after shave, or using air fresheners while attending this event.
Calendar:  Hearing on Aversives Bill  

When:  Tuesday, November 14, 2017,  1:00 P.M.

Where:  Massachusetts State House 

The Joint Committee on Children, Families and Persons with Disabilities will hold a hearing on H93 "An Act Regarding the Use of Aversive Therapy"

This is the aversives bill which would ban the inhumane use of aversives in the form of electric shocks to autistic and other developmentally disabled people.  We have been fighting this for over thirty years.  Many of you have shown up at the state house time and time again to fight this.  Unfortunately, we must do this once more.
 
Importantly, if you are a person with a disability, you may now be able to testify more quickly at State House hearings.  To request reasonable accommodations please email Carl Richardson, the ADA Coordinator at the state house, at least one business day (and preferably more) prior to the hearing, at  carl.richardson@state.ma.us.  Explain what bill you are testifying for and when it is, and why you are requesting the accommodation.  

If you cannot make it that day, please email  your testimony. All testimony should include your full name, address and contact information, as well as any degrees you hold, affiliations, etc.
Calendar:  Updates on OneCare  

One Care Stakeholders,
We have four announcements to share with you:

1. Next One Care Open Meeting

Please join us at the next One Care Open Meeting; details are below:

Tuesday, November 14, 2017*
2:00 p.m. - 4:00 p.m.
1 Ashburton Place, 21st Floor
Boston, MA

At this meeting, MassHealth plans to update stakeholders on the following:

· One Care quality performance
· One Care financial performance
· Preview of new approaches to improve care for dual eligible members through integrated care

We welcome attendance from all stakeholders and members of the public with an interest in One Care. Reasonable accommodations will be made for participants who need assistance. Please send your request for accommodations to Donna Kymalainen at Donna.Kymalainen@state.ma.us.

*Note: the Open Meeting is being held in the afternoon on the same day as the One Care Implementation Council meeting (which will be held in the morning - see below for more details).

2. Members can now enroll in One Care online!

To enroll online, visit the One Care website at www.mass.gov/one-care and click on "I'm ready to enroll in One Care!" This will take you to a page that describes all the ways that members can enroll in One Care, including the new online option.

From that page, click on "Enroll online now by clicking here: Instructions for Filling out the One Care Online Enrollment Form"

From the instructions form, click on Enroll in One Care Now (in bold in the middle of the page), which will take you to the actual form.

If you have any questions about how to enroll online, you can call the MassHealth Customer Service Center at 1-800-841-2900, or TTY:1-800-497-4648 (for people who are deaf, hard of hearing or speech disabled).

3. New "friendly" address for the One Care website

With the updates to Mass.gov, you can now use the following URL to get to the One Care website: www.mass.gov/one-care

4. Reminder: Next Implementation Council Meeting

Details of the next Implementation Council meeting are below:

Tuesday, November 14, 2017*
10:00 a.m. - 12:00 p.m.
AARP Office
One Beacon St., 23rd Floor, Suite 2301
Boston, MA

We welcome attendance from all stakeholders and members of the public with an interest in One Care. Reasonable accommodations will be made for participants who need assistance. Please send your request for accommodations to Donna Kymalainen at Donna.Kymalainen@state.ma.us.

*Note: the Implementation Council meeting is being held in the morning on the same day as the One Care Open Meeting (which will be held in the afternoon - see above for more details).

Malinda A. Ellwood, JD
Health Programs Policy Analyst
MassHealth
Executive Office of Health and Human Services
One Ashburton Place
Boston, MA 02108
malinda.ellwood@state.ma.us
Calendar:  World of Careers

When:  Thursday, November 16, 10:00 A.M. - 2:30 P.M.

Where:  District Hall, 75 Northern Avenue, Boston, MA 02210

Our Space Our Place and its partners are very excited to announce the World of Careers Workshop.

Cost: Free

This workshop is for students and adults with disabilities who want to know more about the types of jobs in the working world and who want to figure out how to use their interests and experiences to get a job.
Attend the World of Careers workshop and learn
  • About the many types of jobs which exists
  • Meet people working today and ask them questions about how they got their job and what they do every day at work and
  • Work together with others to find out how your interests and skills can assist you to find a job
Light breakfast and lunch will be available.

Please let us know about your accommodation needs by Thursday October 26, 2017

To get more information:
Call: (617) 459-4084
Email: President@ourspaceourplace.org
To register for World of Careers workshop
http://www.ourspaceourplace.org/eventdetails.php

Sponsors

District Hall


Reader's digest- Partners for Sight Foundation
Boston Center for Blind Children
https://www.bostoncenterforblindchildren.org/

Our Space Our Place, Inc.
Http://www.ourspaceourplace.org
Calendar: Award Winning Film Unrest

When:  Sunday, November 12, 2017, 2:00 - 4:30 P.M.

Where:   Regent Theatre,  7 Medford St., Arlington, MA

Sundance Film Festival and Boston Globe Award winning film Unrest.

Spread the word! Our organization is co-sponsoring an important film event on November 12th. We hope our members and their friends will attend. It's a select screening of UNREST, a Sundance Film Festival and Boston Globe award-winning love story about a mystery disease: ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). 

"When Harvard PhD student Jennifer Brea is struck down by a fever that leaves her bedridden, she sets out on a virtual journey to document her story as she fights a disease that medicine forgot." The film is beautifully made, winning awards and addresses both women's issues and disability rights. Join us for the film UNREST on November 12, 2017, 2-4:30 pm, at the historic 500-seat Regent Theatre, 7 Medford St., Arlington, MA.

"Riveting......equal parts medical mystery, science lesson, political advocacy primer and even a love story."
- The San Francisco Chronicle

Additional media attention for UNREST: NPR's Science Friday, Cosmopolitan magazine, the Today Show with Megyn Kelly, The New York Times, Variety, Hollywood Reporter, Los Angeles Times, Chicago Tribune and PBS's Tavis Smiley.

Film trailer here ( www.unrest.film/trailer)


Purchase tickets here 

MORE ABOUT UNREST

Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is "all in your head." This film is an intimate, artful and unflinching look at severe chronic illness and, ultimately, a study on love and compassion. It invites scientists to ask new questions and medical providers to reflect on how they can best support patients and caregivers grappling with any lifelong illness for which there are no clear answers. 
In This Issue
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Disability Policy Consortium
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