Disability Policy Consortium Weekly Update (June 18, 2024)

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Jun 18, 2024, 3:50:26 PM6/18/24
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Disability Policy Consortium
Weekly Update
June 18th, 2024
Cartoon figures with various disabilities are walking up a green incline towards an image of the state house. One figure in a wheelchair holds an "About Us By Us" sign. Text above reads "Advocacy Access Action"
Greetings!

We hope you're doing well and staying cool!

First of all, I wanted to say thank you from the bottom of my heart for the outpouring of supportive emails and messages I've received since announcing my upcoming departure. I love this place and this community so much, and it means so much to see people rallying behind me. I have a lot I'm looking forward to doing at DPC between now and November, but even when I'm in DC, I will be taking the knowledge and the values of the Massachusetts disability community with me. In the coming days and weeks, we will be sharing more about the search process for DPC's next Executive Director, including information on how to apply. 

In this week's newsletter, we have information on two major upcoming events: a DAAHR forum this coming friday, and DPC's annual meeting in July (both happening over Zoom). We also have a number of other exciting events, job postings, and research opportunities. 

Finally, we also want to draw your attention to an event happening out of state, but one we are supporting and sending a staff member to: this Thursday at 2PM in New York City, advocates will be gathering to tell the NY Department of Education to stop sending disabled students to be tortured at the Judge Rotenberg Center! Protesters will gather at 2:30 pm at the intersection of Centre and Chambers Street and march to the Tweet Courthouse (52 Chambers St). If you know anyone in New York, please encourage them to attend!

Be well, take care, and stay safe
Colin Killick
Executive Director
Disability Policy Consortium
25 Kingston St., 4th Floor
Boston MA 02111
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DAAHR Forum on Monday From 1-3
DAAHR Forum on Plan to Change Disability Evaluations!

 

On Monday, June 24 from 1:00 to 3:00 pm, Disability Advocates Advancing our Healthcare Rights (DAAHR), a coalition organized by DPC and Boston Center for Independent Living, will hold a virtual forum on MassHealth’s plan to establish a centralized evaluation for services for people with disabilities.

The proposed Independent Assessment Entity (IAE) would evaluate people on MassHealth, One Care and Senior Care Options ISCO) for PCA services, adult foster care, group adult foster care, day habilitation services, and the PACE program. 

Evaluations were placed in disability organizations decades ago because it was believed providers best understand disability and independent living—they are culturally competent!

Advocates are concerned one entity would be overly bureaucratic, faceless, and serve to reduce services for consumers. The state believes the current system needs improvement and its plan would actually increase access to services for consumers.

 

Attend the forum to learn about the IAE and indicate if you want to be evaluated for services such as PCAs by one entity covering the entire state. Mike Levine, Director of MassHealth, will attend.

You can register by clicking here.

 

For more information contact Bill Henning at bhen...@bostoncil.org.

 

ADA reasonable accommodations for people with disabilities are available upon request. To submit a request, contact Susan Smith at ssm...@bostoncil.org or (617) 338-6665. As part of your request, please include a description of the accommodation you will need and include as much detail as you can. Please provide your contact information in case we need more information. When possible, please allow at least seven days advance notice. Last-minute requests will be accepted but may be difficult to fill. 


Save the Date: DPC Annual Meeting 7/10

Looking Back on an Amazing Ten Years
On July 10th from 6-8, join DPC via Zoom for our annual public meeting. You will be hearing from our board of directors about the state of the organization, and we will be electing new board members and celebrating those whose board terms are ending.

Additionally, 2024 marks both ten years since our Executive Director Colin Killick first came to the DPC and five years since he took over as ED. With this being his last year in the role, we are taking the opportunity to look back and celebrate just how much DPC has accomplished in the last ten years, and how much we have changed, as well as showing appreciation to some of the longstanding staff members who have made this such a special place.

Watch this space--
Zoom Signup Information to come in future newsletters

ASL interpreters and captioning will be provided. For any other accommodation needs, please contact Grant Yosenick at gyos...@dpcma.org


Donate a kidney, save a life!

photo of posted printed out flyer of Howard, information below
Did you know that you often only need one kidney to live a fully healthy and long life? Howard, a passionate advocate for the mental health community, loves life and being of service to his community. Howard seeks the angel that will step forward to share the gift of life. Please don't hesitate to reach out for more information. All inquiries are private and confidential. Contact:

Boruch Wolf: A living kidney donor and coordinator of this effort to save Howard 



Disability In The News

Commonwealth countries encouraged to prioritise disability inclusion in policy development


The Commonwealth, June 14, 2024

Representatives from governments, international agencies and disabled people’s organisations have urged countries to prioritise the rights and needs of people with disabilities in policy development.

They were speaking at a side event hosted by the Commonwealth Secretariat’s Human Rights Unit at the United Nations headquarters in New York City on 11 June 2024, during the 17th Conference of State Parties to the United Nations Convention on the Rights of Persons with Disabilities (COSP17).

Opening the event, Commonwealth Assistant Secretary-General Professor Luis Franceschi said:

“Under the Convention’s general obligations, the protection and promotion of the human rights of persons with disabilities must be taken into account in all policies and programmes.”

Finally, some positive disability representation in a new movie

'New Life' features ALS in the storyline, includes an actor with the condition


ALS News Today, Dagmar Munn, June 11, 2024

Amid the busyness of last month’s ALS awareness activities, I almost missed learning about the debut of a special movie that I was quite involved with during its early stages.

My friend’s email opened with, “Were your ears ringing last night?” That made me sit up straight. She told me she had participated in the ALS Therapy Development Institute’s third annual ALS Film Fest and said, “You got a very big shoutout last night.”

Turns out John Rosman, the screenwriter and director of the movie “New Life,” had been invited to the film fest to discuss his movie and its ALS connections. My friend told me that during the discussion, he mentioned how in 2022, during his research, he found my column on ALS News Today and asked me to give feedback on the sections of his script that dealt with ALS. Then, he asked me to assist in recruiting an ALS patient for a supporting role in the film. I wrote about my interesting experiences in the column “Improving ALS Representation in Movies: My Behind-the-Scenes Role.”

Fast forward to 2024, and Rosman’s film has finally wrapped up production and is now available for viewing on Amazon Prime Video.

Upcoming Community Events

Public Hearing for proposed regulations at: 115 CMR 14.00 (Self-Determination and Self-Directed Services), to be held via Zoom on Tuesday, June 18, 2024, from 1:00 PM – 3:00 PM.  

 

Copies of the proposed regulations are posted on the DDS Website at https://www.mass.gov/info-details/dds-notice-of-public-hearing-and-opportunity-for-public-comment. 

Public comments can be made at dds.regs...@mass.gov and will be accepted by the Department until Tuesday, June 18, 2024, at 5:00 p.m.  

NEW! and Ongoing Employment Opportunities

OUTREACH OMBUDSMAN

DEAF/ HARD OF HEARING

JOB DESCRIPTION

The Outreach Ombudsman for Deaf/ Hard of Hearing has two primary functions.

This person serves as a complaint response and investigatory interface for people contacting the Ombudsman Office by phone, email or in person who also identifies themselves as Deaf. This position provides ombudsman services, facilitates communications, investigates, and seeks remedies for, and provides information and assistance as necessary regarding concerns and issues raised by MassHealth Health Plan enrollees and other interested individuals. The Ombudsman then categorizes and documents these issues and concerns in a secured database system and submits required reports as necessary. The Ombudsman operates in a manner to preserve the privacy and confidentiality of those seeking services and maintains an independent, neutral/impartial position with respect to the concerns raised.

And by engaging in outreach events to communities served by My Ombudsman, the Deaf/HOH Outreach Ombudsman will also build connections and provide support to community members.

Areas of Responsibility

Community Outreach

• Develop and implement a plan to visit My Ombudsman’s partner
organizations and provide in-person Ombudsman services

• Attend outreach events and give presentations to introduce My
Ombudsman to new partners and members

• Provide community education on MassHealth member benefits and rights

• Participate in outreach meetings, event planning meetings, and other
meetings related to community outreach.

Complaint Investigation, Resolution, and Documentation

• Prepare a plan for investigating and resolving the complaint.

• Gather additional information, and help the member prioritize the
importance of each complaint (if they have more than one).

• Investigate the complaint by contacting involved parties and conducting
research via policies and handbooks.

• Flag emerging urgent or time-sensitive cases and alert the
appropriate parties in accordance with program policies.

• Maintain ongoing communication with all involved parties (member,
provider, plan, etc.) in accordance to program policies.

• Provide accurate and thorough answers (conducting research as
necessary) in response to member requests for information.

• Provide members with referrals and “warm hand-offs” to external
organizations when appropriate.

• Collect member data and document pertinent information in My
Ombudsman’s database in accordance with program policies.

My Ombudsman, DPC, and MassHealth Knowledge

• Learn the mission, philosophy, background and operations of My
Ombudsman and the Disability Policy Consortium.

• Build and maintain a strong foundation of MassHealth and health plan
knowledge.

• Stay current with new MassHealth policies and health plan updates.
Member Communication and Support

• Interact with all members compassionately and respectfully while
remaining professional and impartial.

• Apply principles of disability rights, independent living, and accessibility
when listening to and responding to member concerns.

• Employ active and mindful listening techniques while maintaining
healthy, professional boundaries,

• Communicate with all members in an approachable, professional, and
easy to understand manner.

Privacy and Confidentiality

• Maintain the privacy, integrity, and storage of personal identifying
information in accordance with program policies.

• Keep paper copies of personally identifying information (PII) or other
sensitive information in locked filing cabinets and/or offices identified by
DPC.

• Ensure that third-parties are not allowed access to physical or
electronic data or records.

• Comply with all applicable laws, regulations and contractual provisions
and abide by the procedures and requirements to maintain privacy and
confidentiality, as outlined by the Executive Office of Health and Human
Services.

General

• Perform day-to-day program tasks such as documenting, writing, typing,
faxing, copying, filing (following established protocols for paper and
electronic files), processing forms and paperwork, and gathering data
necessary for reporting.

• Participate in team meetings and discussions.

• Prepare and submit all required documents (such as case summaries,
supervision worksheets, etc. in a timely manner).

• Ensure the professional quality, technical accuracy, and timely
completion and delivery of the responsibilities of the position.

• The Deaf/HOH Outreach Ombudsman will also work on the
program’s outreach efforts, such as giving presentations or
attending community events on the program’s behalf. This may
involve some travel (expenses are fully reimbursed) and/or
occasional weekend/evening work (with flex time offered).


Qualifications

Education

Relevant professional experience will be considered.


Skills

• Strong ISL/ASL skills are a must. Familiarity with assistive technology
for the Deaf and Hard of Hearing is important as well.

• Strong written communication skills in English; strong written
command of another language (especially Mandarin, Cantonese,
Haitian-Creole, Russian, Arabic, Spanish, and Portuguese) is a plus.

• Demonstrated interpersonal communication skills with people of various
backgrounds, levels of education and abilities.

• Effectively able to convey complex information in a simple, clear, and
understandable manner.

• Demonstrated ability to remain calm and nonjudgmental in a crisis.

• Excellent problem solving and conflict resolution skills.

• Excellent note-taking, organizational, and multitasking skills.

• Strong command of the phone, computer, and navigating the internet.

• Ability to work effectively in a team environment.

• Ability to properly maintain proprietary and confidential information.

Experience

• At least three years of experience working in the customer service
industry, healthcare setting, social services field, or related areas
working directly with people.

• At least one year of experience with case management.

• Strong preference for someone with lived experience or extensive
cultural knowledge of the disability community or other communities we
serve.

• Prior experience with state or federal health care programs for people
with disabilities is preferred.

• Experience working with MassHealth programs and services is
preferred.

• Prior knowledge of ombudsman programs, disability civil rights policy,
and the health care environment in Massachusetts is a plus, but not
required.


This is a full-time position with a salary range of $50,000-52,000 per year and benefits including paid vacation, paid sick time, 13 paid holidays, dental and life insurance and a medical insurance reimbursement.

Upon hire, the successful candidate must be cleared through the state's Criminal Offender Record Information (CORI) service.

The DPC encourages candidates of all backgrounds to apply. The DPC is committed to a policy of non-discrimination and equal opportunity for all applicants and employees without regard to race, color, religion, sex, sexual orientation, gender identity, national origin, ancestry, age, disability, veteran status, military service, genetic information, receipt of free medical care, or
any other category protected under applicable federal, state, or local law.

Candidates should submit a letter of interest and resume via email to: h...@dpcma.org

Senior Policy Associate


Job Type:
Advocacy

Organization:
Citizens' Housing and Planning Associate (CHAPA)

Contact Name:
Matt Noyes

Contact Email:

Address:
One Beacon Street
Boston, MA
United States

Job Description:

Citizens’ Housing and Planning Association (CHAPA) is the non-profit umbrella organization for affordable housing and community development activities in Massachusetts with a diverse, active membership of more than 8,000 people.

At the core of CHAPA’s work, we believe that every person in Massachusetts should have a safe, healthy, and affordable place to call home. Established in 1967, CHAPA serves as a convener across sectors to advance equitable housing policy and programs. Much of our work happens collaboratively through local coalition building, committee meetings, and legislative advocacy during which gathering a range of voices at the table is critical.

Join a passionate, vibrant team making a difference in Massachusetts! To learn more about CHAPA’s impact, please visit www.chapa.org.

Key Job Responsibilities:

The Senior Policy Associate is a key member of CHAPA’s policy team, serving as the point person on policy related to housing for extremely low-income (ELI) households. The Senior Policy Associate will assist in the development and implementation of CHAPA’s policy agenda, help staff and facilitate CHAPA’s policy committees and coalitions, and represent CHAPA externally through engagement with legislators, policy makers, advocates, and the public. The Senior Policy Associate reports to CHAPA’s Director of Public Policy.

Specific Responsibilities:
  • Develop and Implement CHAPA’s Public Policy Agenda.
  • Work with the Director of Public Policy on development of legislative, budgetary and regulatory priorities, with a focus on ELI housing.
  • Analyze legislation and other policy proposals, and make recommendations regarding CHAPA’s response.
  • Execute legislative, budgetary, and regulatory advocacy strategies.
  • Communicate and advocate with legislators, state administration officials, and their staff.
  • Draft and present testimony at legislative and regulatory hearings.
  • Monitor federal housing policy and identify opportunities for CHAPA’s engagement.
  • Staff CHAPA’s Policy Committees and Coalitions related to ELI housing.
  • Facilitate the Rental Assistance committee and MRVP coalition.
  • Work with Committee and Coalition chairs to develop overarching priorities and meeting agendas.
  • Engage with CHAPA member organizations to ensure broad representation of stakeholders at committee and coalition meetings.
  • Represent CHAPA Externally.
  • Participate as a CHAPA representative on external coalitions related to ELI housing.
  • Present at policy forums and community meetings.
  • Contribute to CHAPA’s website, reports, and other communications materials.
  • Engage and mobilize CHAPA members and advocacy partners on priority ELI housing policy issues.

Qualifications: 
  • 5-7 years of experience in affordable housing public policy advocacy.
  • Sensitivity to the needs of people of low incomes and an avid dedication to increasing affordable housing access and opportunities for all in Massachusetts.
  • Knowledge of Massachusetts state housing and rental assistance programs.
  • Knowledge of the Massachusetts legislative process.
  • Experience leading or working with and through coalitions.
  • Ability and desire to work with diverse stakeholders.
  • Strong communication skills, including written and oral.
  • Ability to multitask and balance competing priorities.

Salary:

The salary range is $75,000-$85,000, based on experience. CHAPA also provides a generous package of benefits including vacation and sick time, health insurance, short-term disability insurance, life insurance, and retirement benefits.

Application Instruction:

Candidates of diverse backgrounds are encouraged to apply. Please submit a cover letter and resume to CHAPA’s Director of Public Policy, Matt Noyes, at mno...@chapa.org. CHAPA will prioritize applications received by Friday, June 28, 2024.

CHAPA is an equal-opportunity employer.
NEW! and Ongoing Surveys and Studies

Massachusetts Department of Public Health

Division for Children & Youth with Special Health Needs

Youth & Young Adult Advisory Council


The Division for Children and Youth with Special Health Needs at the Massachusetts Department of Public Health (DPH) is looking for young people with special health needs or disabilities to be on an advisory council!

Who can join?
People 16-26 years old who have chronic medical, physical, developmental, behavioral, or emotional conditions and/or disabilities and live in Massachusetts.

What will you do?
You and a group of your peers will discuss what it means to live with special health needs and disabilities over Zoom. You will advise the DPH Division for Children and Youth with Special Health Needs on state programs and the needs of young people.

At some point, all young people with special health needs start to take more control of their health, as they transition to adulthood and move from pediatric to adult health care. Everyone’s transition process is different, and everyone has different goals around their independence and health. We want your input on how we can make this health transition process easier!

Time Commitment?
We will meet six times a year for one and a half hours at a time. You may be asked to spend time preparing for meetings.

What do you get?
Each member will be paid $40 per hour for the time spent in meetings and preparing for meetings. There will also be occasional guest lectures and leadership opportunities!

Questions and How to Apply?
Disability Discussion Flyer with a cartoon person at the bottom shrugging and having an idea. (Information Below)

Are you a person with a disability living in Boston? 


Share your hopes and concerns about the future of Boston and your place in it. Take part in the RealTalk Boston project. Meet in a small group setting with a trained facilitator to have a guided conversation. Discuss issues like housing and income inequality. $15 Amazon Gift Card and light refreshments provided. Space is limited. For more information, please email Caitlin Walsh at cwa...@dlc-ma.org

Disabled or chronically ill in Massachusetts?

Tell DPH what you need to be healthy!


Massachusetts Department of Public Health Disability Community Health Needs Assessment

Take the Community Health Equity Survey 

in ASL


Want to tell MA-DPH how to better meet the health needs of your community?

The Community Health Equity Survey will help communities improve conditions that impact health, particularly those most impacted by health inequities. The survey was developed in collaboration with over 100 community members and partners across Massachusetts, and it reflects what residents want to know about how their communities experience housing, mental health, safety, and other drivers of health. The Massachusetts Department of Public Health and our partners will use CHEI data to allocate funding, improve programming, and develop policies that address health inequities.

Seeking people with physical disabilities to share their experiences with employment, whether in full-time permanent employment and/or in non-traditional jobs (e.g., freelance, contract, temporary, etc.). We want to understand how assistive technology and/or accommodations impact employment outcomes. We will interview participants over Zoom or by telephone. The interview will be scheduled at a time that is convenient for you and will take approximately 90 minutes. You will receive $50 as compensation for your time. 

Who can participate? To participate in the study, you must be: 

§ 18 years of age or older 
§ Be able to understand and speak English or be an ASL-user 
§ Have a physical disability
§ Use assistive technology and/or accommodations for work
§ Be employed in a full-time position and/or currently have a nontraditional job(s)

To be considered, please complete the screening questionnaire. We use this screening tool to ensure that we have a group of diverse participants. 


Questions? Contact Salimah LaForce at sal...@cacp.gatech.edu or 404-385-4614 
Disability Law Center is looking for volunteers to conduct a polling place accessibility survey! If you would be interested, click here for more details
Looking for Disabled People of Color Who Have Lived in Nursing Homes or Other Institutions to Share their Experiences:

  • Are you a person with a disability who has lived in a nursing home or other institution?
  • Are you now living in the community and receiving Medicaid Home and Community-Based Services (or want to)?
  • Are you a person of color?
  • Are you 18 years of age or older?
 
If you answered YES to each of the questions above, you may be eligible to participate.
 
Participation includes an interview over the telephone or video-conference. The interview will last about 1-1 ½ hours. Participants will receive a $50 gift card for their time.
 
If you are interested in participating, please contact Kim The, Senior Research Associate at the Lurie Institute for Disability Policy, at hcba...@brandeis.edu or 781-736-8165
Have you ever had medical bills you couldn't pay?
Navigating Uncovered Medical Expenses in the U.S Health System

Research conducted by the University of Washington, Seattle, WA 

DLC is concerned about and looking at the issue of day habilitation programs excluding people with high support needs:

The Disability Law Center (DLC) has been receiving complaints from day habilitation participants and their families who are unable to return to their day habilitation programs or return full time.  Often, individuals with higher support needs or complex medical conditions are being singled out and excluded over other day hab participants. Please help DLC gather information to address this problem. You may answer this survey for yourself, or for your family member who was or is enrolled in day hab, or wishes to be. Thank you.
 
Research participants Needed:

Accessible and Inclusive Diabetes Management Study (Ai4DM) - 
 
Lakeshore Foundation is recruiting participants for a study to measure the impact of the first online diabetes management program for people with physical disabilities, conducted at the University of Alabama at Birmingham. Please help us get the word out! Below you’ll find more information about the study, requirements for participants, and content that can be shared in newsletters, emails, or on social media. 
·    Our Website (About Us, Requirements, FAQs)
·    An Introduction Video About This Study
·    Social Media Graphics (Download at this Link)
 
SMART-Health – An online, home-based exercise training program for people with a spinal cord injury 
 
Lakeshore Foundation is recruiting participants for a study to evaluate the effects of an exercise program on improving pain, fatigue, physical activity, and physical function with people with a spinal cord injury (SCI). The exercise program is delivered remotely and nationwide. Please help us get the word out! Below you’ll find more information about the study, requirements for participants, and content that can be shared in newsletter, emails, or on social media. 
COVID-19 Resources
At DPC, we believe information is vital for an educated and empowered consumer or customer. This may be a long, drawn out crisis. Please keep yourself safe, and then help others. We all need a sense of purpose in life. Many of you have friends, and neighbors who will be lonely, and scared. It costs nothing to call someone once a day and ask "How are you?" or "How can I help you?" This can be done from the safety of your home. For the remainder of this public health crisis we will suspend our calendar section, and will instead focus on the information you need. Be safe our friends.
General Information




MassHealth Consumers






Financial Information



Food Access




Mental Health


Legal


Information in ASL

MCDHH COVID-19 Cards



Medical Information (Vlogs)






Financial Literacy




Mental Health




For Kids and Teens


General Resources
Disability Policy Consortium | www.dpcma.org
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Disability Policy Consortium | 25 Kingston St 4th Floor | Boston, MA 02111 US

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