June 24, 2019
Disability Policy Consortium Weekly Update

,

The DPC Annual meeting was a great success.  A thank you to all who attended.

This week we begin by saying thank you and happy trails to Jim Kruidenier the Executive Director of Stavros, who is retiring after a three decade career.  We also would be remiss if we did not give a shout out to long time DPC co-founder and supporter, Vicker "Vic" DiGravio who is moving on after twelve years at the Association for Behavioral Healthcare.  Good luck Vic.

We have a large calendar section this week and a couple of news articles to get the wheels turning in your brain this Monday morning.
 
Until next week, happy reading. 

John Winske
Disability Policy Consortium
Editorial:  Saying Thank You For a Job Well Done

A white male with reddish grey hair_ wire rim glasses a whitish beard wearing a dark suit with a dark shir and a polka dotted tie
Thank You Jim Kruidenier

An annoying thing about publishing a newsletter for Monday mornings is that every Sunday you spend a few hours thinking, "What am I going to write?"  You also miss the opportunity to relax like most people.

On the other hand writing the newsletter gives you a platform to share your views.  It also gives me an opportunity to shine a light on some special people who richly deserve attention.  I especially like to point out the quiet heroes - the ones who do not call attention to themselves.  Today is such an occasion.

This is the last week of work for Jim Kruidenier, Executive Director of Stavros Center for Independent Living in Springfield and Amherst.  Jim has been the ED at Stavros for almost thirty years.  Jim has been a tireless advocate for people with disabilities, and has built Stavros into a powerhouse Independent Living Center.  Most likely because most of us think that the world comes to an end after you pass 495, and certainly after Worcester, Jim does not get a lot of attention.  And truthfully, I think he likes it that way.

In meetings, Jim is fairly quiet.  He will usually allow those of us with the bigger mouths to prattle on, occasionally nodding his head.  But then he'll speak two or three sentences, and you realize he said more in those short moments, than you have.

Aside from our work together, Jim and I are linked on a personal level.  In the 1990s, my brother, Paul Winske, worked at Stavros.  Indeed, Paul was employed there when he passed away in 2001.  Paul adored working at Stavros, and loved working for Jim.  It was Stavros employees who reported my brother missing, and had the police do a wellness check before 9:30 A.M., when he did not show up for work, and could not be reached by phone.  Unfortunately, he had passed away in his sleep.  

I want you to think about this for a moment.  When was the last time you heard of co-workers caring about a fellow employee that much?  Checking in when they are late for work, because you are worried.  Co-workers even met the police at Paul's apartment.

To this day, Stavros honors my brother's memory with an award in his name.  This tells you all you need to know about the sort of organization that Jim leads.  

When the DPC honored Jim two years ago, he said " My work at Stavros has been, well, the adventure of a lifetime. And I've never lacked for companions - folks smarter than me, wiser than me, braver than me. I'm grateful to have had the chance to be a part of such an important, wonderful movement for human rights."

What I know is that there has not been a better leader.

John Winske
Opportunity:  Interested in Developing Customized Assistive Technology
  
In an MIT class on Principles and Practices of Assistive Technology (PPAT/6.811/HST.420/2.78), clients with disabilities join teams of engineering students to create customized assistive technology solutions. We are looking for clients with specific project ideas for our class this upcoming fall.

We hope to find twelve adventurous individuals who face daily life challenges related to their disability. Potential clients must:
  • Have one or more specific project ideas in mind;
  • Be based in Cambridge, MA or nearby;
  • Be easily accessible via phone or email;
  • Be available to meet in-person with students for approximately one hour every week from mid-September through early December;
  • Be open to new experiences and willing to give active feedback to the students.
Previous client projects have included:

A camera mount for a photographer who suffered right-side paralysis due to a stroke

An accessible ID card holder for an individual with limited dexterity

An emergency alert app for an individual who experiences transient non-verbal episodes

A dynamic keyboard for an individual with autism

Prior project videos can be viewed here: http://ppat.mit.edu/fall2018/pastprojects.html.

If you are interested in participating as a client, please complete the brief application at https://forms.gle/R1B4JLS3zz6ZJSVY6.

Applications will be considered on rolling basis until August 5. Due to the number of applications received, we regret that we can only respond to individuals with project ideas that pass an initial screening. If your project idea advances to that stage, we will be in touch to answer your questions and confirm mutual interest.

Best regards,

Julie

Julie Greenberg, PhD
Director of Education and Senior Lecturer
Harvard-MIT Health Sciences and Technology
Institute for Medical Engineering and Science
MIT Room E25-518 
 617-258-6086
Net News:  Casey, Collins Introduce Bill to Expand Access to Assistive Technology for Seniors and People with Disabilities 

Washington, D.C. - Today, U.S. Senators Bob Casey (D-PA) and Susan Collins (R-ME), the Ranking Member and Chairman of the Special Committee on Aging, introduced the 21st Century Assistive Technology Act that would increase access to assistive technology-devices or services that help seniors and people with disabilities to maintain their independence and live where they choose. The bill, which comes following a hearing in the Aging Committee on the topic, would also help reduce the low employment and high poverty rates of older adults and people with disabilities by helping them live independently and maintain employment.

"Assistive technology helps millions of people live independently, remain engaged in their community and improves the quality of life for seniors and people with disabilities," said Senator Casey. "It is important that we update this bill to support the advances in assistive technology over the last 15 years, so that those who need it can be full participants in every aspect of their lives."

"As our population ages, the need for care and support is increasing," said Senator Collins. "Advances in technology are working to bridge the 'care gap,' improving function in activities of daily living, helping to manage multiple chronic conditions, reducing risk of hazards, and making homes safer for seniors. The 21st Century Assistive Technology Act would help to ensure that seniors continue to have access to these life-changing technologies to help them maintain their independence."

The 21st Century Assistive Technology Act (S.1835) Act would update the Assistive Technology Act by clarifying that the program serves all people with disabilities, including veterans and older adults who developed disabilities later in life. The Assistive Technology Act would also increase the funding authorized for programs that serve rural areas. Assistive technology refers to any piece of equipment, product or service that helps someone with a disability or functional limitation accomplish their daily needs such as wheelchair ramps, hearing aids, screen readers and even smart phones.

This bill is supported by the Assistive Technology Act Programs, the Association of University Centers on Disabilities, the Autistic Self Advocacy Network, the American Association of People with Disabilities, The Arc of the United States, the National Center for Special Education in Charter Schools and CAST.

Please download the pdf attachment for the details.

Contact:
Aisha Johnson
202-228-6367 (o)
202-384-8989 (m)
Net News:  Housing Cost in Boston and Massachusetts Reaching for the Sky

You probably don't need an article to tell you this but housing costs in Boston and Massachusetts are ridiculous.  Indeed according to an article from WBUR and the State House News Service Boston jumped from the 6th highest cost in the nation to number three in one year.  A year ago someone would have needed to earn $28.64 per hour to pay the rent on a two bedroom apartment in Massachusetts.  This year the cost jumped more than $5 to $33.81, for the hourly wage needed to pay the monthly rent.

Net News: Urgent Needs From Head to Toe 

The Washington Post had an eye opening article about a temporary health clinic set up in rural Tennessee to provide healthcare for people without insurance.  Tennessee is one of the states which has refused to adopt Medicaid expansion under the Affordable Care Act.  

As I read this piece I kept thinking two thoughts.  First is "Is this really part of the United States I am reading about?"  Second was "How many of these people are actually people with disabilities?"  

Calendar:  Two Bills Affecting the Deaf Community 

What: Consumer Protection and Professional Licensure Hearing

When:  Monday, June 24, 2019, 1:00 P.M. - 4:00 P.M.

Where: State House, Room A-2

Two bills directly impacting Deaf and hard of hearing will be heard this day : 

S198 - An Act establishing the licensure of interpreters and oral transliterators for the Deaf 

S197 - An Act protecting consumers of sign language and oral interpretation and transliteration.

MSAD's ASL Vlog for S198: https://massdeaf.org/4384-2/

MSAD's ASL Vlog Licensure Bill Announcement: https://www.youtube.com/watch?v=KSKgPQStFv8&t=2s

Email: President@massdeaf.org for vlog statement or a letter to Senate to share your experiences and why the bill is important to deaf and hard of hearing community.

MSAD AND WMAD SUPPORT S198

Who's who on Joint Committee on Consumer Protection and Professional Licensure? Public Hearing: June 24th, 1 to 4 PM Room A-2

https://malegislature.gov/Committees/Detail/J17
Calendar:  Assisted Suicide Hearing

When:  Tuesday, June 25 at 11 a.m.

Where:  Gardner Auditorium,  State House, Boston

(Bowdoin Street entrance)

In spite of losing in a statewide election in 2012, the assisted suicide bill ( HB 1926 and S1208 ) has been resurrected. The new bill is called "The End-Of-Life Options Act", and has changed from the original ballot question. More protections have been added, but the disability community needs to determine whether these are adequate. At MWCIL, we still have concerns.

In MetroWest, some of our legislators have already signed on to the bill. On the surface, this initiative feels like it has more widespread support than the 2012 ballot question. In other words, if you have an opinion on this topic, please share it at the hearing!

We hope that people with disabilities will testify at the hearing as we have a unique perspective on this issue. Oral testimony will probably be limited to 2 or 3 minutes, but anyone can provide written testimony.

Written testimony should be sent to the chairs of the Joint Committee on Public Health, Senator Jo Comerford and Representative John Mahoney.



We thank the MetroWest Independent Living Center and Not Dead Yet for this notice.

We at the DPC recognize there are differing views on this initiative within our membership and our community.  However you feel please take this opportunity to influence the process.
Calendar: Help the Disability Law Center Set Priorities   

The Disability Law Center (DLC) is looking for your expertise on the issues you face as a person or a family member of a person with a disability. We will be using the information you provide us for our annual priority setting process.

Thursday, June 27
10 am - 3 pm
Suffolk University - Sargent Hall
120 Tremont Street
Boston, MA 02108

A light lunch will be provided **

Please submit any accommodation requests to Amanda at 617-315-4440 or agasparonis@dlc-ma.org.

RSVPs are encouraged in order for us to have an accurate number for materials and food. You can RSVP by calling Amanda at 617-315-4440 or emailing her at agasparonis@dlc-ma.org.

Visit our 2019 Priorities Page

Take our 2020 Priorities Survey

Disability Law Center
Calendar: City of Boston Community Forum on Disability Issues

When:  Friday, June 28, 2019,  2:00 pm - 4:00 pm

Where: Suffolk University Law School, 
120 Tremont St, Boston, Massachusetts 02108

Do you have concerns, questions, or comments on a disability issue in Boston?

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 have been requested for this event.

To request an accommodation, contact us by June 14th at:  disability@boston.gov or call 617-635-3682 / 
617-635-2541 TTY

Pre- Register and request accommodations online.

* Pre-registration is not required to attend

ASL and CART provided.

Calendar: 24th Annual Deaf Awareness Day at Six Flag New England  

When:  Saturday, August 3, 2019, Ticket Booths Open 9:00 A.M. to 4 P.M.

Rides and Waterpark Only

Tickets are $39 per person, Children under 2 are Free!

In This Issue
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Disability Policy Consortium
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Malden, MA 02148
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