Since March 14, 2020, the Northeast Region of MFOFC has convened stakeholders across Massachusetts on Mondays and Thursdays 8-9:30p by video conference to discuss how can we support families and our loved ones with disabilities throughout and beyond the COVID-19 pandemic.
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Past Community Calls
The DLC will be using the information gathered for their annual priority setting process and your input will inform the work they do in 2021.
You are welcome to review and provide input on the DLC's 2020 Priorities.
RE-ENVISIONING DAY PROGRAMS
RE-IMAGINING EDUCATION SUBCOMMITTEE MEETING
We resumed our work Re-Imagining Education with a small group. We decided that we will convene again in early August on a Community Call to discuss how we can collectively respond to re-opening plans from districts, with a focus on equity, empowering and supporting families across district divisions, and more. Stay tuned!!
During our call on June 29th, we took a step towards re-imagining what education can and should look like. We watched a clip from this webinar with Dr. Gholdy Mohammed and utilized breakout rooms to respond to these prompts:
- We want schools where....
- We want teachers who...
- We want a curriculum that....
- We want special education to be...
At the conclusion of this call, we distributed a link to a Google Form where we invited participants to join a subcommittee focused on this topic. We are inviting everyone who submitted their name and anyone else who is interested to participate in this evening's discussion.
WHO IS OUR "WE?"
Periodically we’ve convened Community Calls to reflect on Community Care. This particular evening was an opportunity to reflect on the “we” that was described on our last Community Care call. The “we” that was defined previously omitted explicit references to identity, such as race or gender. The group on this call struggled with whether or not to define our “we” further with explicit reference to race. We will continue these conversations, with the intention of coming to consensus about being anti-racist, inclusive of all familial structures and disabilities.
BRACING FOR THE BUDGET
Monique Ching, policy analyst at Mass Budget & Policy Center (MassBudget) joined the Community Call on July 9th for a very high level, big picture conversation about the budget. She shared a spectacular set of slides with excellent visuals on how the budget works, as well as reasons why we should be pushing for progressive taxes.
Two big questions that we are left with:
1) How can we still deliver services and care to our loved ones so that they can still live enviable lives?
2) What legislative action can we take now to ensure the safety of our loved ones?
Some action items that were recommended:
1) Contact your state legislators and tell them what services & supports mean the most to your family. Be sure to describe the grants and fundraising that supplement the budgets for agencies, schools, and service providers, in general.
2) Contact people you know in other states so they can advocate with their Representatives and Senators for the next COVID package. (Here are talking points.)
3) Post on social media using #DontCutUsOut and #WeAreEssential.
The Advisory Group (AG) for the Community Calls convened for their first retreat on Monday, July 13th. As a result of this conversation, the AG split into three subcommittees to work on assessing family engagement on the Community Calls; goals and objectives for the Community Calls; and a document describing our "Asks." Please get in touch if you would like to be involved in any of these subcommittees!
The AG currently includes 23 folx representing families across the lifespan, multiple types of stakeholders, and many different family structures. While we are large in number, we are also seeking more perspectives.
If you identify with any pieces below, please reach out to email@example.com to express your interest.
+ families pursuing self-direction
+ families whose loved ones experience complex medical needs and/or medical fragility
+families whose loved ones are over age 22
+ families in Western MA
+ families connected to Brazilian and Portuguese-speaking communities
+ families connected to Chinese family networks
+ folx working in systems of care
We look forward to talking with Kelly again as we get farther along into Phase 3 of the Governor’s Re-Opening Plan.
WHERE ARE YOU GETTING YOUR SUPPORT?
SCHOOL FOR MEDICALLY COMPLEX STUDENTS
TURNING 22 DURING COVID
We heard concerns from families whose loved ones turned 22 and aged out of special education entitlements since March, when schools closed. 52 stakeholders joined this call.
The most salient takeaway for many was the opportunity to request an extension of transition services from the school district, and the need to document any verbal agreement to this in writing.
The most universal concerns expressed by families who called in were: 1) needing training and resources to support a major pivot in their loved one’s plans for life after special education (including setting up home programming), 2) a comprehensive referral process where the student and family received meaningful support to transition from special education services to a new array of supports in a different environment, and 3) the significant uncertainty of what services and programs would be offered in this new fiscal year.
As an aside, it remains crucial for school districts to complete and submit 688 referrals for all students so the agencies serving adults can plan appropriately.
IN-PERSON SUPPORTS IN HOSPITALS
Members of the subcommittee focused on the Crisis Standards of Care and Hospital Visitation Policies, including staff attorneys from the Center for Public Representation and the Disability Law Center as well as leadership in MFOFC, solicited feedback from supporters and guardians of adults with disabilities in preparation for an upcoming meeting with the Secretary of Health & Human Services. At this meeting currently scheduled for July, the subcommittee is planning to work with the Secretary to increase clarity of hospital visitation policies, namely identifying supporters and guardians as crucial accommodations for patients with disabilities.
Key resources identified during this call include:
- This fact sheet from the Disability Law Center.
- Updated guidance from the Mass Department of Public Health published on June 6th regarding visitation.
- Health care proxy and any supporter or guardianship documents.
- This white paper describing the rationale behind revising hospital vistation policies.
26 people joined this call.
LETTERS SENT TO DEPT OF ELEMENTARY & SECONDARY EDUCATION, GUIDANCE ON EXTENDED SCHOOL YEAR
This was an opportunity to hear updates about activity related to special education and for stakeholders to voice any concerns they believed had not already been addressed. 42 stakeholders participated in this call.
Tim Sindelar (special education attorney), Kevin Murray (Executive Director of Mass Advocates for Children), and Michael Gregory (Trauma and Learning Policy Initiative and Harvard Law School) all joined this discussion to share updates on:
- the Department of Elementary and Secondary Education's (DESE) Guidance regarding Extended School Year (ESY)
- the cover letter and list of concerns specific to special education that was sent along to DESE and the Re-opening Committee
- a second letter that was sent to legislative leaders, the Commissioner, and Secretary.
Kevin Murray also shared information about the Emergency Response Group that Mass Advocates for Children is convening as part of their COSA initiative.
Here is a video recording of Julia Landau from MAC reviewing the Guidance from DESE regarding ESY in great detail.
This call was convened in response to the tremendous violence our nation witnessed in the murder of George Floyd and the unrest that ensued. Keith Jones led the discussion on this call, with assistance from Elizabeth Bostic. It is insufficient to summarize this conversation with 35 stakeholders, though it should be noted that racism and ableism were both addressed.
DIRECT SUPPORT PROFESSIONALS
Leaders from the union representing Direct Support Professionals (DSPs), SEIU 509, joined with families and other stakeholders to discuss the impact of COVID19 on their work, as well as the long-standing challenges and tensions these frontline, essential workers experience. There were particularly moving remarks shared by a DSP and Human Rights Officer, Ms. Freedman.
All callers agreed that this was the beginning of a conversation between families and DSPs, that there are a lot of shared interests, and that there are invaluable opportunities to work together moving forward. 54 stakeholders participated in this call.
RE-ENVISIONING DAY & EMPLOYMENT PROGRAMMING
The purpose of this call was to begin re-imagining what these services can look like. 82 stakeholders joined this call.
Hillary Dunn from the Disability Law Center and Cindy Thomas from the Institute for Community Inclusion briefly discussed their work on these services leading up to their closure.
Cathy Boyle from Autism Housing Pathways shared a summary of findings from focus groups and conversations that AHP has convened to discuss a small subset of the population usually served in day programming that is now thriving during the closures. Here are the slides that were shared on this call.
Participants utilized breakout rooms on Zoom to list the strengths of these services, according to families. These strengths pre-dominantly included the importance of a routine, the opportunity to continue building skills and socializing. It was also observed that families relied on these services for respite and assurance that their loved ones were appropriately cared for when not at either the family home or a staffed residence.
This was notably the beginning of a larger conversation about how all stakeholders can re-envision these programs and how adults with disabilities can be supported in having meaningful days.
OUTCOME OF CALLS FROM MARCH 14 - MAY 18, 2020
Calls throughout these two months proved invaluable for opening the lines of communication between families, human services provider agencies, DDS family support personnel, advocacy organizations, and more; providing candid feedback from families to stakeholders; providing crucial updates to families as issues arose and guidance was published; and bringing stakeholders together for mutual support.
Stakeholders provided feedback about these calls verbally, in email, and by responding to a survey.
Here's what everyone recommended:
Form an Advisory Group to guide and support these calls.
The Advisory Group includes 24 people, including community leaders, parents and siblings of people with disabilities, parent professionals working at a variety of advocacy organizations, teachers, and staff at state agencies. The group has met weekly since May 20, 2020, and brings a diversity of perspectives and experiences to these conversations.
Focus each call on a specific topic.
Each call has addressed a specific topic of interest since May 28, 2020.
Increase language capacity so stakeholders whose primary language isn’t English can participate.
This is still in progress. There is increasing support and commitment to making this happen, with the recognition that there are limited financial resources to invest in this, so we would need to rely on grassroots efforts to make this a reality.
Increase diversity of stakeholders so that more perspectives are represented, namely those of self-advocates and people with disabilities, medical practitioners, and additional state agencies.
Still a work in progress.