April 22, 2019
Disability Policy Consortium Weekly Update


We begin with two original pieces this week.  First an editorial by our Deputy Director Colin Killick, outlining some recent advocacy victories and how you can help now.  

Secondly I say good bye to a dear friend and advocate.

We have a couple of potential opportunities for you as well this week.
Until next week, happy reading. 

John Winske
Disability Policy Consortium
DPC Editorial: Restoring the Promise of Home

If you've spent any time in the disability advocacy world,  you'll know that housing is an absolutely vital issue.  People with disabilities are more than twice as likely to  be homeless as people without disabilities, and 
nationwide more than 80,000 people with disabilities are  Chronically Homeless, meaning that they've been 
homeless for a year, or more than four times in the past 
three ye ars. This problem has a variety of causes: h ousing is expensive, and people with disabilities are  far more likely to be poor. Much of the housing stock  in our state is physically inaccessible, making it harder  to find a unit that fits an individual's needs. And housing  discrimination against people with disabilities is  rampant-particularly against people with mental health  diagnoses and developmental disabilities,
as shown in a 2017 HUD study.

Here in Massachusetts, however, one small program
has grown considerably in the past few years, and has helped hundreds of people with disabilities find safe and affordable housing that meets their needs. Its growth has been a testament to what can happen when people with disabilities advocate year after year for what we need-and, with your help, this week we can take it even further, and finally restore a broken promise that was made to the disability community the year before DPC was founded.
When the Alternative Housing Voucher Program (AHVP) was created in 1995, it was responding to a very specific problem: the state placed a 13.5% quota on the number of people with disabilities under age 65 who could live in its Elderly/Disabled housing developments. Disability activists protested, and ultimately a compromise was struck-the state created AHVP and funded 800 mobile housing vouchers for people with disabilities under 65 that would allow them to find their own housing that met their needs. It was a promise to the community that our need for affordable, accessible, integrated housing would be met-but it was not a promise that was entirely kept. Over the years, funding was cut, the price of housing rose, and by 2014 the program had fallen to $3.45 million in funding, enough to provide just 350 vouchers. That year, however, the disability community decided to do something about it. At the Boston Center for Independent Living, Allegra Stout, then a community organizer there, started a volunteer leadership team to work on the issue. I was one of that year's recruits, and it was my first exposure to disability rights work. We ultimately won a $100,000 increase for the program that year-just enough for 10 or so new vouchers, but the first increase the program had seen in six years, and, it turned out, a sign of things to come.
In the fall of 2014, I joined DPC as a community organizer, and the volunteer group became a joint DPC-BCIL project called the Housing Advocacy Leadership Team that Allegra and I led together. The next year, with the help of some tremendously dedicated community members like Donna Grady and Olivia Richard, we had our first breakthrough-a $1.05 million increase, enough for more than 100 vouchers. The biggest successes, however, were still to come. In 2016, Allegra and I moved on from our positions, and leadership of HALT was taken over by two new organizers: first Lenny Somervell at DPC, who was then joined by Shaya French at BCIL. Under their leadership, the program has gone up in back to back years-by $400,000 in 2017, and last year by $1.15 million, the biggest increase in the history of the program. Since we've started this work, the program has grown by nearly $2.7 million, and hundreds of people are now housed because of it. However, we've still not gotten back to that level of 800 vouchers the program had in 1996. This week, that could change.

Already, the House Ways and Means budget recommended a further increase of $1 million for AHVP, another big step forward for this program. That would bring the program to 700 vouchers, a big accomplishment, but not quite a full restoration of the program. However, Representative Marjorie Decker of Cambridge introduced a budget amendment, #1159, that would add on another $850,000, bringing the program to a total of $8 million. This, we are confident, would be enough to finally get us back to 800 vouchers. So far 37 representatives have signed on- you can see whether yours has here.  Whether they have or not, please call and email them, and tell them how much this issue means to you. Every dollar the state invests in this program will help someone with a disability get off the street and live a more stable, accessible, and independent life. Whatever amount of funding comes through in the final house budget won't be final-but DPC will be there to fight for this program and for every program that benefits people with disabilities as the budget process moves through the Senate, the conference committee, and eventually to the governor.
Even 800 vouchers won't be enough to eliminate homelessness and housing insecurity for people with disabilities in this state; more people than that needed help in 1995, and the problem has only grown since then. No matter what level of funding AHVP gets this year, DPC is going to keep pushing to make more affordable, accessible housing available to people with disabilities, and we're sure our friends at BCIL will as well. However, the success we have had with this program proves something: it proves that our community has the power to make change. For years, this program did nothing but shrink. Now, with the power of community organizing, support from fantastic partners like Citizens Housing and Planning Association and the MA Coalition for the Homeless, and above all the dedication of the disability community, we stand on the verge of more than doubling it in just five years. If we can do this, and if we are willing to put in the work, then we can tackle any problem that faces us.

Colin Killick
In Memoriam:  I Knew an Angel

"Oh, I believe there are Angels Among Us,
Sent down to us from somewhere up above.
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love."
- Alabama

I was just about to head out the door for Easter dinner, but I decided I would do one final check of Facebook. That was when I saw the news that Denise Karuth had passed. After my sadness passed, I had to smile. Easter Sunday was a fitting day for a true angel to ascend.

There are so many things I want to tell you about Denise. I have thought many times about writing this column because she has had glioblastoma for three years. Denise fought every step of the way and battled back so many times. Above all else Denise was a humble and gentle soul. I only heard one person say a negative thing about Denise and I never trusted that person ever again. 

I first met Denise and  Fred Pelka  (her partner of 47 years  ) in 1985 at the Boston Center for Independent Living. It was probably during a transportation meeting. Denise knew more about accessible transportation for people with disabilities than anyone I have ever met. She would later head the Governor's Commission on Accessible Transportation under Governor Dukakis.

Denise was a hippie, right out of central casting, with flowing black hair and usually wearing a long skirt. She embodied love, sharing and generosity. She was a liberal's liberal, but she did not wring her hands. She acted on her beliefs. Whether it was writing letters for Amnesty International, counseling women with disabilities who had been victims of sexual abuse, writing the proposal that funded a homeless shelter at her church or serving on the Board of Directors of the Boston Self-Help Center and the Massachusetts Coalition of Citizens with Disabilities, Denise went full-throttle. Long before many others, s he understood that disability rights is a piece of the larger battle for social justice.

Denise became an ordained minister several years ago. Prior to that, she had been a Chaplain at Mount Holyoke. In 2001, when my brother Paul passed away suddenly, my family was crushed. Paul was a fierce advocate, and worked for Stavros. My mom was worried that her priest, who did not understand disability, would not do justice to Paul and his life's work. I suggested that Denise officiate at his funeral and burial. Denise was the bedrock for my family that horrible week. She beautifully captured my brother's love for life and his zeal for justice.

As most of you know, I can be a tad snarky and cynical in my old age. But I will swear on everything I have ever held dear, I once knew an angel on earth. She was in a wheelchair and legally blind. She was fierce and tough, but most of all, she was an angel. Love you, Denise.

John Winske
Opportunity:  MBTA and Wayfinding

Dear Friends of SWA,

The MBTA Department of System-Wide Accessibility is pleased to invite our blind or low vision customers to participate in an exciting new study on the use of an indoor wayfinding system called PERCEPT. Developed at UMass Amherst, PERCEPT uses Bluetooth beacon technology to assist people who are blind or have low vision in navigating unfamiliar and/or complex environments smoothly and independently. Study participants will be able to download the PERCEPT app to their smartphone for free and use it to navigate the MBTA's North Station, providing evaluation and feedback at their own convenience. For more information on this study and how to enroll, see the attached flyer or contact James Schafer at schafer@umass.edu

In addition to the PERCEPT project, SWA is excited to be working on a number of upcoming initiatives directly benefiting our blind or low vision customers. For example, the T will soon be launching a partnership with the popular app-based service Aira, connecting people who are blind or have low vision with trained agents that provide visual descriptions of their environment. From these high-tech innovations, to tactile wayfinding in our stations, to our new Automated Fare Collection system--we're looking for participation and feedback from our blind or low vision customers to make sure we're getting the job done right.

If you're interested in becoming involved with these or any future initiatives, we'd love for you to get in touch by e-mailing swa@mbta.com. Your expertise is our greatest resource--we can't wait to hear from you!

Kindest Regards,

The Department of System-Wide Accessibility at the MBTA
Opportunity: SCI Artist Innovator Fund
The spinal cord injury (SCI) community is abundant with out-of-the-box thinkers, hackers, problem solvers, and individuals creatively tackling challenges. Center for Cultural Innovation (CCI) launches the first ever SCI Artist-Innovator Fund offering artists, innovators, inventors, makers, and entrepreneurs living with spinal cord injury funds for social-impact, creative entrepreneurship projects.

Funds of up to $7,500 are available to 10-12 artists-entrepreneurs with SCI.

Application opens February 15, 2019

Deadline: June 12, 2019

Visit http://www.cciarts.org application guidelines.

Please let me know if you have any questions!
thanks a million.

Reveca Torres
Founder & Director | BACKBONES

Program Consultant | SCI Artist Innovator Fund | CCI
Net News:  Feds to Investigate Whether Medicaid Firms Denying Care to Disabled

According to the Des Moines Register, Federal investigators are looking into whether "private  Medicaid management companies, including those covering more than 600,000 poor or disabled Iowans, are unfairly denying services."  We should all watch these stories carefully as many of these same companies are setting up now to compete for Medicaid contracts here in Massachusetts.  You can read more here.
Net News:  Why I Can't Get Legally Married Because of My Disability

The Mighty had a great article by a young woman, Jennie Lewin, (it is a couple of years old) about the marriage penalty faced by people with disabilities.  You can read it here
Calendar:  Webinar - Using an ABLE Account to Support Youth from Transition to Independent Living

Thursday, April 25, 2019 - 2:00 - 3:00 p.m. ET

An ABLE account offers an opportunity for qualified individuals with disabilities to save for a better life experience without jeopardizing means-tested benefits. The savings in an ABLE account may be used, tax-free, for a variety of qualified disability expenses (QDE), many of which are transition-related and may improve individual outcomes.

The purpose of this webinar is to educate individuals with disabilities, their families, providers and advocates on how establishing and using an ABLE account can provide options and choices to improve the life trajectory of transition age youth. This webinar will address:
  • How is "transition age youth" defined?
  • How is "transition" defined?
  • How can an ABLE account help?
  • Best practices to consider.

The webinar will be moderated by Miranda Kennedy, Director, ABLE National Resource Center (ANRC). Panelists include:

  • Marlene Ulisky, Disability Benefits Expert, ANRC
  • Transition age ABLE account owners
  • Parents of ABLE account owners 

In order to prepare for the webinar, we recommend that you review the following:

Register for this webinar.

Please note: Real-time captioning will be provided for this webinar. For other accommodation requests, questions about the webinar, or the registration process, please contact us at info@ablenrc.org.

Calendar: Abuse at Fernald, the MetFern Cemetery Presented by Students From Gann Academy 

When:  Monday, April 29, 2019, 7:00 - 9:00 P.M.

Where:  Price Center, 27 Christina Street, Newton Highlands   ( near the corners of Needham, Oak and Christina Streets, enter the building from the parking lot on Christina Street)

The Metro Regional Citizen's Advisory Council of the Massachusetts Department of Developmental Services
invites the public to attend a presentation by students of Gann Academy, Waltham.

The Gann Academy 11th grade US History students have dedicated their year to learning about and teaching others about the community of people that lived in the Fernald School, the Met State Hospital and were buried in the MetFern Cemetery in Waltham. Our goal is to try to understand how institutions like the Fernald School could have been built and to think more clearly about how we can be a more inclusive society. 

We then are going to share our learnings with the broader community with new wayside markers at the MetFern Cemetery and with a book that commemorates and honors the lives of the people who are buried there.

We urge you to attend to learn how people with disabilities were abused and disrespected through the years and fortunately how current attitudes have changed to promoting independence and self-fulfillment and quality care for those who have disabilities. Hear how this group of students has changed the ultimate disrespect to several hundred individuals from two state institutions.

Come to honor these students and their accomplishments.

Please share this invitation with all individuals and groups whom you think might be interested.

More about the program can be found here.
In This Issue
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