July 1, 2019
Disability Policy Consortium Weekly Update

,

Wow.  Can you believe we are at the midpoint of this year?  How can it possibly be July already?

This week's newsletter has the remarks of DPC organizer, Harry Weissman, at his graduation from his fellowship.  We also include our testimony from a state house hearing on assisted suicide.

We have exciting employment and training opportunities, we share an update on access at the MBTA and news from around the web for you.
 
Until next week, happy reading. 

John Winske
Disability Policy Consortium
Editorial:  Graduation Remarks of DPC JOIN Fellow Harry Weissman

I sit down with my supervisor, Lenny Somervell, for our regular check-in and I nearly forget to breathe. I screwed up. I'm no good at this.

When I started my JOIN year at the Disability Policy Consortium, I was full of optimism. I'm doing something new that's exciting to me, that means something to me -- no more anxiety-laden procrastination, no more balls dropped, no more screwing up. But sure enough, a few months in, I had a long list of phone calls to make and they made me anxious so I put them off and all of a sudden I'm making 150 calls in 3 days and I'm pushing back deadlines and I'm like "Oh god, here comes the shame spiral..." Here we are again, making the same mistakes, and everything's different this time! The only thing that's constant is me. Clearly, I'm the problem.

So, I'm sitting with Lenny in our shared office and I take a deep breath and I begin, tentatively, "Yeah, so, the only thing I did last week was make phone calls and I fell really behind on them and I just really didn't manage my time well...?" And she looks at me and goes, "Yeah. You didn't. And that's okay."

And I breathe again, a sigh of relief.

I shouldn't be surprised that a disability rights organization would cast aside ableist expectations around work and productivity, or be patient and understanding when I internalize and feel crushed by those expectations. But that's the point! I love working at a disability rights organization, but I shouldn't have to work at a disability rights organization to feel like I'm a functioning human. DPC is modeling the world as it should be, and I get to be a part of that.

I am disabled. I get distracted and I move slowly and I get stuck in cycles of anxiety. Also, I make people smile and laugh. I'm creative and have great ideas. I connect with people quickly and easily and I might space out when you're talking but I'm listening and I care!! I'm proud of all of these things -- they make me a good organizer.

Harry Weissman
hweissman@dpcma.org

Editor's Note: Harry Weissman was a DPC JOIN fellow for 2018-2019.  He graduated this past week.  He will be staying on as a member of the DPC organizing staff. The Jewish Organizing Institute and Network Fellowship runs a year-long, paid community organizing training program in Boston. The Fellowship trains Jewish young adults (ages 21-30) to organize communities to effectively fight against structural injustice and inequality. If not already employed, JOIN supports candidates in finding jobs as community organizers.  Colin Killick and Lenny Somervell are past graduates of this fellowship and work at DPC.
DPC Testimony:  Regarding H.1926, An Act Relative to End of Life Options
  
The Disability Policy Consortium opposes H.1926, An Act Relative to End of Life Option. People with Disabilities, people with terminal illnesses, elders, and others with complex and costly medical needs already struggle to maintain access to treatments necessary to sustain life. Private insurance, recent developments to state health plans such as the Third-Party Administrator, and continuing threats to Medicaid and Medicare budgets all push a logic of cost-cutting which often comes at the expense of patients. In such a climate, where treatments for rare diseases, cancer, and terminal illnesses like ALS are routinely denied by insurance providers for being experimental, and where healthcare costs are skyrocketing, especially for life-saving or life-extending treatments for serious conditions, it would be irresponsible for the state to offer the much cheaper option of a lethal overdose as "care."

The Disability Policy Consortium fears that doing so would lead not to better options for terminally ill people, but to people with disabilities, people of color, and low-income people being forced to end their lives before they otherwise would because life-extending or life-saving treatments were denied to them by private insurance or the state, and they cannot afford these options out of pocket.

Furthermore, it has been proven that medical professionals are notoriously bad at determining both quality of life and longevity for people with certain types of disabilities. Since the mechanism for when to offer lethal injection is when a doctor determines a patient has six months to live, we fear that this will result in people whose lives and lifespans are consistently devalued and underestimated by physicians being recommended lethal overdose disproportionately and in situations where it is in no way appropriate. We also fear that, since medical expenses incurred as part of end of life care can bankrupt families, people with disabilities, elders, and terminally ill people will feel economic pressure to end their lives before they would otherwise do so, not to spare their families the pain of watching them deteriorate, but to spare them to expense of having to care for them. 

Lenny Somervell
Lead Organizer, DPC
DPC Update:  Today's the Day! Help Us Make it a Great One
  
This is a big day in the history of Disability Policy Consortium, and we're so excited for our next chapter. Today, I am stepping up as the new Executive Director of DPC. John Winske, who had led us from strength to strength for more than five years, will stay on as Deputy Director to help make this transition successful. I have big plans for this new era of our organization, and I want us to start off on the right foot, so I'm asking for your help to make it a success. 

Over the last year, DPC has made a tremendous impact on behalf of the disability community.  Our joint housing team with BCIL is about to win more than $1.5 million to house low-income people with disabilities, and our advocates are defending disability rights at the national level on the issues of healthcare privacy and prescription drug access. Our research team just launched two groundbreaking studies with Brandeis University. Our MyOmbudsman program, which launched this year, gives every person with a disability enrolled in a MassHealth ACO access to free expert mediation to help them work with their plan to get the best possible care. For all this and more, we were recognized as a leading Social Innovator by the Social Innovation Forum, giving us the chance to make the case for DPC before hundreds of Boston's leading philanthropists.

However, we want to go further, and for that we need your help. People with disabilities are facing serious threats, from benefit cuts, to denials of healthcare, to discrimination in housing and employment. To fight back, we want to grow our organizing staff, improve our communication capabilities, and start training young people with disabilities in the history of our movement and the skills to make change in their communities.

Please donate today to help DPC defend the rights of people with disabilities. Every gift can make a difference, no matter what size. And thanks to some generous longtime supporters of DPC, your gift will go even further: the first $1000 of donations will be matched, dollar for dollar. 
In addition to donating, there are a variety of ways you can support DPC. You can attend our events, like our upcoming Annual Dinner in October. You can volunteer your skills to help out the organization, or apply to join our board. Most importantly of all, you can talk to your legislators about disability rights priorities, and talk with our organizers about joining our campaigns. To learn more, please feel free to email me, and I'll be happy to connect you with the right member of our staff.

Thank you so much for your support. Without our community behind us, we couldn't do anything. With it, I think there's nothing we can't do. 

Colin Killick
Executive Director, DPC
Employment:  Investigator, Disability Law Center   

Position: Investigator - Representative Payee Program
Reports To: Director of Advocacy
Wage Class: Exempt

Position Overview:

DLC seeks a detail-oriented investigator who is committed to the rights of people with disabilities living in the community and in institutional settings; who possesses strong interpersonal skills to interview people with disabilities, providers and family members in the community; and, who is able to work with financial data and written procedures to assure that people with disabilities are protected from exploitation or financial mismanagement.

The general responsibility of the Investigator is to conduct reviews of Social Security Administration Representative Payees. This includes interviewing beneficiaries and Representative Payees, documenting observations, reviewing financial records, identifying possible health or safety violations and drafting reports. The position also includes educating Representative Payees to ensure that they fully understand their duties and responsibilities.

The Social Security Administration appoints Representative Payees for Social Security beneficiaries who SSA has determined are incapable of managing their own funds.

Responsibilities and Duties
  • Conduct site reviews, investigations and educational visits with individual and organizational representative payees throughout the state, following strict timelines and site visit procedures.
  • Interview representative payees, beneficiaries, and others, in a variety of settings including private homes and institutions.
  • Examine financial records and document observations to assess violations or potential incidents of mismanagement of beneficiary funds.
  • Verify representative payees are using SSA benefits properly on behalf of beneficiaries, as well as correctly executing all other representative payee duties.
  • Prepare comprehensive reports detailing the investigation, findings, and recommendations.
  • Develop corrective action plans to assist representative payees in conforming to requirements specified by the Social Security Administration Commissioner.
  • Develop training and education materials and conduct training and outreach activities following SSA protocols, as needed.
  • Analyze trends and data from investigations and monitoring activities to determine if they present systemic issues which may be appropriate for DLC to address, and, with the Rep Payee Manager, formulate strategies for their prevention, reduction or elimination.
  • Manage caseload in a timely manner, following all Social Security guidelines regarding procedural steps and deadlines.
  • Attend meetings of consumer groups, service providers, and other appropriate bodes as requested.
  • Document activities in accordance with agency policies.
  • Perform other duties, as required.
For more information or to apply please go to https://www.dlc-ma.org/investigator-representative-payee-program/
Opportunity:  Become a Paid Community Evaluator  

From: Debra Bercuvitz, MPH, Director, FIRST (Families in Recovery SupporT) Steps Together, Coordinator, Perinatal Substance Use Initiative, Division of Pregnancy, Infancy, and Early Childhood Bureau of Family Health and Nutrition, MA Department of Public Health

In the Bureau of Family Health and Nutrition, we partner frequently with TIER (Tufts Interdisciplinary Evaluation Research), especially for evaluations and needs assessments. TIER hopes to build evaluation capacity in the diverse communities with which they work by training and mentoring community members to advise and co-conduct their evaluations with them. By partnering with community members, it is their hope that TIER's research will contribute to program and policy solutions that authentically represent communities' goals and aspirations.

To begin this process, TIER is launching a Community Evaluators (CEs) project as part of an evaluation they are conducting for the Massachusetts Department of Public Health (MDPH). After participating in a two-day training on participatory research approaches at Tufts University, CEs will be responsible, with support from TIER staff, for organizing, co-facilitating, and analyzing data from a focus group to be held in their respective community. TIER staff will also consult with the CEs on other evaluation activities to ensure that interpretation of findings is valid and useful from their important perspectives. Participating CEs will each receive a $3,000 stipend to attend the training and conduct the focus group, as described above. TIER will also cover lodging and travel costs (if any) and provide childcare during evening trainings, meetings, and focus groups. More information on this project and the TIER CE model can be found on:  https://sites.google.com/view/tier-community-evaluators/home. The long-term goal is for the trained CEs to join the TIER Community Advisory Board, and continue to work with them on evaluations and research projects into the future. 

They are currently recruiting potential CE candidates and I am working on recruiting Community Evaluators from Western MA so that the needs of our region are represented. They do not have applicants yet from Western MA. They are also looking for more male applicants, people in recovery, and people of color. Ideal candidates would be actively involved in their local communities and have some experience with advocacy as a participant and/or program staff. Above all, they are looking for individuals that care deeply about families, children, and youth. Absolutely no prior evaluation or research experience is necessary. Potential candidates are required to complete an online application, which can be found here https://forms.gle/JitCW3CFSccxa4267. They are accepting applications until July 30, 2019. They will only have 10 CEs in this first cohort, and will accept applications on a rolling basis.

If you know of a potential candidate, I am hoping you would be willing to share with them the attached recruitment flyer as well as the website information. I am also hoping that you can send this email from you to folks with whom you work. If you have any questions, Melissa will follow up with you or any members of your staff or members.

Recruitment Flyer

Let me know if you pursue this!

Best,

Risa

Risa Silverman, M.P.H.
Pronouns: she/her/hers
Director, Office for Public Health Practice & Outreach;
Adjunct Faculty, Department of Health Policy and Promotion
School of Public Health and Health Sciences
715 N. Pleasant Street, 244 Arnold House
University of Massachusetts
Amherst, MA 01003
(413) 545-2529
risa@schoolph.umass.edu
Community News: MBTA System Wide Access Update

Dear Friends of SWA,

We're heading into summer with several news items to share, including ways that you can participate in SWA!

1. Get caught up on our latest projects

We're pleased to present our biannual SWA Initiatives report for June 2019. This report represents a fresh new format for a fresh set of accessibility projects--selected, as always, based on customer feedback and priorities identified by SWA. We hope you're as excited about them as we are!

2. Help design new trainings for front-line staff

We've begun working with Operations to upgrade our accessibility trainings for bus operators and station agents. The inclusion of real customer voices and experiences in these trainings is vital. With that goal in mind, SWA is looking for customers with disabilities to participate by appearing in a photo and/or video shoot. Please contact us at swa@mbta.com if interested.

3. Apply to become an Internal Access Monitor

We're recruiting customers with and without disabilities for our Internal Access Monitoring Program. Internal Access Monitors work in two-person teams documenting their experience riding bus, subway, Commuter Rail, and ferry. Candidates should be familiar with and comfortable using the MBTA fixed-route system. See the attached flyer for further details.

4. Check out our newest elevators

We're always happy to be able to announce new elevators--and for the first time ever, two elevators connecting the Orange Line Oak Grove and Red Line Alewife platforms are operating at Downtown Crossing! The elevators went into service on Monday.

Please feel free to circulate this e-mail among your networks. Thank you for reading!

Sincerely,

The SWA Team
mbta.com/accessibility
Net News: Iowa State Auditor - Medicaid Managed Care Violated Contracts Encouraged Nursing Homes for Quads  

McKnight's Long Term Care News is reporting that two insurance companies have been charged with breaching their managed care contracts by encouraging two beneficiaries to move into nursing homes.  Specifically, the consumers had their home care hours reduced and were told to move into nursing homes.   The two companies accused are Amerigroup Iowa and UnitedHealthcare.  To read more go here.
Net News:  Young Man with Autism Killed by Off Duty Officer, Parents Shot at Costco  

In a news story that is being repeated far to often, DisabilityScoop is reporting that a 32 year old man with disabilities was shot and killed by an off-duty officer at a Costco in Corona, California.  The officer also shot both the parents of the victim.  
Net News:  Kohl's Rolls Out Adaptive Clothing   

DisabilityScoop is reporting that Kohl's has announced a line of adaptive clothing for children with disabilities. They join Target and Zappos which previously announced similar initiatives.  You can read more here.
Net News: None of 2020 Presidential Websites Fully Accessible

Under the heading of color me shocked, Time is reporting that none of the 22 candidates for President of the United States has a website that is 100% compliant with the ADA.  Miami Lighthouse reviewed the websites for the 20 Democratic candidates who made the debate stage, as well as President Trump and William Weld for accessibility.  You can read more here.
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
DPC Needs your Help!!! 
PayPal link
The DPC uses the PayPal PayFast system for your tax deductible charitable donations. You do not need to have a PayPal account to use this system because credit card payments are also accepted.

Causes Logo
The DPC also uses the Causes program for recurring donations (as well as one time donations).  This is a great way to make a smaller monthly donation.
 
Donate by Mail
Make check or money order payable to:

Disability Policy Consortium
11 Dartmouth Street
Suite 301
Malden, MA 02148
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