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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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.