CARS letterhead with orgs logos and the words: MeCARS is a group of advocates, parents, and organizations, who have been working together since 2013 focusing on reducing and preventing the use of the exclusionary, traumatizing, and dangerous practices of time out rooms, restraint, and seclusion in our schools through advocacy, policy, and outreach.

The Maine Coalition Against Restraint and Seclusion (MeCARS)

SCHOOL REOPENING STATEMENT

To download a pdf of this statement please go here: CARS_Statement_on_School_Reopening.pdf

COVID-19 Increases Urgency to Prioritize Supportive Services and to Reduce the Use of Exclusionary and Dangerous Interventions of Time Out Rooms, Seclusion and Restraint.

Most every public school student in Maine left their school buildings in March due to the COVID-19 pandemic. As a result, the 2019-2020 school year may turn out to be the first time in seven years that Maine’s record-high use of restraint and seclusion did not increase. Maine schools use restraint and seclusion at a rate four times the national average with over 22,000 during the 2018-2019 school year alone. Students, faculty, and staff in Maine have not had to endure these dangerous interventions for the past five months and we believe they deserve to begin the new school year safely. We urge school districts to take this opportunity to commit to supporting students without the use of time out rooms, seclusion, or restraint.

The law regarding the use of restraint and seclusion in Maine schools has not changed. The Maine Department of Education (MDOE) Chapter 33 Rule recognizes that restraint and seclusion do not have any therapeutic or educational benefit and they can only be used as emergency interventions when there is a risk of injury or harm and only after less intrusive interventions have failed. Chapter 33 prioritizes the use of behavior assessment, intervention, and strategies to address problem behaviors through skill building and environmental modifications in order to avoid situations where an emergency might be created. Chapter 33 also requires detailed documentation and reporting to ensure that parents and the MDOE are notified. And, it includes debriefing requirements for not only the student and staff involved, but also for the school to assess aggregate data to identify areas where they could reduce the use of future emergency interventions.

As schools reopen, there will be a great need to address the social emotional and behavioral needs of all students, through school wide approaches and systems. In addition, schools must continue the individualized planning process for students that are served under IDEA and Section 504. The MDOE highlights the need to focus on student supports in Parts II-IV of their ‘Framework for Reopening Schools and Returning to In-Person Instruction’, available at: https://www.maine.gov/doe/framework. We urge school districts to begin the year working collaboratively with parents and students to avoid incidents that may lead to the use of these exclusionary and dangerous interventions.

MeCARS is also concerned that schools might use seclusion related to COVID-19. In MDOE’s Framework, they require schools to designate a medical isolation room for students and staff who exhibit COVID-19 symptoms during the school day. If medical isolation isn’t voluntary, at a minimum it must be recorded as seclusion and follow Chapter 33.

On 8/14/2020, MDOE issued guidance that included ‘Physical Restraint/Seclusion and COVID-19.’ MDOE appropriately highlights the heightened risk of transferring COVID-19 when a staff restrains or secludes a student. And, they state that “students involved in emergency physical restraint and seclusion should have a free and unobstructed airway and should not be wearing a face covering during a physical restraint or seclusion.”

To proactively address these concerns, MDOE may want to consider reviewing schools’ historical use of restraint and seclusion to focus on schools that may need additional support in preventing the use of these dangerous interventions that have been made even more unsafe due to COVID-19. That data is available at: https://www.maine.gov/doe/schools/safeschools/restraint

CARS RECOMMENDED RESOURCES 2020

Maine Department of Education:

-MDOE’s restraint and seclusion website includes information on data, training, and Chapter 33 requirements, available at:

https://www.maine.gov/doe/schools/safeschools/restraint

-Positive Behavior Intervention and Supports (PBIS), available at:

https://www.mainepbis.org/

-MDOE 8/14/2020 guidance, “Guidance on PPE, Toileting, Restraint & Seclusion”, available at: https://www.maine.gov/doe/sites/maine.gov.doe/files/inline-files/Guidance%20on%20PPE%20Toileting%20Restraint%20%20Seclusion%208.14.20_0.pdf

National Disability Rights Network:

-2020-21 School Reopening Principles, available at: https://www.ndrn.org/wp-content/uploads/2020/08/NDRN-School-Reopening-FINAL-.pdf

U.S. Department of Education:

-Restraint and Seclusion: Resource Document, available at: https://www2.ed.gov/policy/seclusion/restraint-and-seclusion-resource-document.html

-Reports, Testimony and Letters Regarding Seclusions and Restraints, available at:

https://www2.ed.gov/policy/seclusion/index.html

-Dear Colleague Letter: Restraint and Seclusion of Students with Disabilities, available at:

https://www2.ed.gov/about/offices/list/ocr/letters/colleague-201612-504-restraint-seclusion-ps.pdf

-Fact Sheet: Restraint and Seclusion of Students with Disabilities, available at:

https://www2.ed.gov/about/offices/list/ocr/docs/dcl-factsheet-201612-504-restraint-seclusion-ps.pdf

-Ideas that Work Three-part webinar series on Continuity of Learning and Return to School during COVID-19, available at:

https://osepideasthatwork.org/evidencebasedclassroomstrategies

-Supporting and Responding to Behavior: Evidence-Based Classroom Strategies for Teachers, available at:

https://osepideasthatwork.org/sites/default/files/ClassroomPBIS_508.pdf

The Center on Positive Behavior Interventions and Support:

https://www.pbis.org/

-Dr. George Sugai explores how to leverage multi-tiered systems to plan for navigating our current reality as a result of the pandemic, video available at:

Dr. Ross Greene, Lives in the Balance:

-New Website to Help End Restraint and Seclusion, available at: https://truecrisisprevention.org/

-One Maine school district found that the use of Dr. Greene’s approach reduced their use of restraint and seclusion, available at:

https://www.chicagotribune.com/investigations/ct-seclusion-restraint-alternatives-grafton-20200413-bfw7u2srpbao3pffhcjdnhr2qq-story.html

Disability Rights Maine:-Restraint And Seclusion In Maine Schools, Reviewing the First Six Years of Data Required by MDOE Rule Chapter 33, available at: https://drme.org/assets/brochures/CH33.Report.FINAL.2019.pdf

Parental Notification of Chapter 33, The Rule Governing Physical Restraint and Seclusion. Available from the Autism Society of Maine at: https://www.asmonline.org/Pdf/Resources/WEB%20Parental%20Notification%20of%20Ch%2033%20D1%20-%20correction.pdf

MDDC’s 5 Year Plan Survey

Please participate and spread the word!

The Maine Developmental Disabilities Council is collecting public input on the issues facing people with developmental disabilities in Maine! The data collected will be used to inform our next five year plan – this is the guiding document that determines how we will focus our funding and resources in the next five years.

Getting the input of self-advocates, family and caregivers, and other stakeholders is critical to our work! We need to hear from you about the state of services for people with developmental disabilities, and your opinions about what issues need the most focus right now. Please help us understand what is most important to making Maine’s service system more effective, more human-centered and inclusive, and more able to meet the diverse needs of our community!

Fill out the survey here, and make sure you give this link to everyone you know: https://forms.gle/Et1fceGbQCWcB7Ao8

During this time of social distancing, the staff of MDDC is working hard to continue our advocacy for Mainers with developmental disabilities, but much of that work is being done remotely. If you need to contact us, the best way is by email! You can find staff email contact information on our contact page.

Self-Directed Services for Maine

The Maine Developmental Disabilities Council has in the last year been working on bringing a self-directed services option to Maine. We contracted with Applied Self Direction to provide technical assistance – they have experience helping multiple states to implement self-directed services. We have worked with a coalition of advocates, service providers, and state agency representatives to create a plan forward towards a system that allows people with developmental disabilities more say and flexibility in their services.

The federal government's Medicaid website describes self-directed services like this: "Self-directed Medicaid services means that participants, or their representatives if applicable, have decision-making authority over certain services and take direct responsibility to manage their services with the assistance of a system of available supports. The self-directed service delivery model is an alternative to traditionally delivered and managed services, such as an agency delivery model. Self-direction of services allows participants to have the responsibility for managing all aspects of service delivery in a person-centered planning process."

In late August 2020, MDDC sent the recommendations gathered from our meetings to Maine’s Office of Aging and Disability Services. You can read that document here: Self-Directed_Option_Recommendations_2020_08_20.pdf

DD Access to Technology Project

DD Tech website logo

In the spring of 2020, with the COVID-19 pandemic beginning, there were clear indications that people with developmental disabilities were unduly impacted by both the coronavirus itself as well as the societal repercussions of “stay at home” orders and social distancing mandates. Congregate settings were becoming hotspots of transmission, and the services that people with DD depend on were being shut down or moved to virtual settings.

One long term issue impacting people with DD is a lack of access to the tools of technology that allow for online and virtual connection – due to the costs of hardware, the learning curve to understand how to use devices, and connectivity issues across the state, among other factors. Faced with a pandemic crisis that was changing the idea of “business as usual”, the Council decided that this issue had become a priority.

After shifting funding to this nascent project, MDDC purchased 147 new iPads, built a simple website to collect applications, and reached out to parent and self-advocate organizations, service providers and case managers across the state to solicit applications to receive an iPad, with a focus on the level of need, current access to wifi, and desire to use the device to receive services, connect with family and friends, and better advocate for themselves.

With only a short, weeklong period of accepting applications, MDDC received over 450 requests for an iPad – over 3 times the number of iPads available for this project. The number of applications indicates a clear and pressing need for access to this kind of technology, and it is clear that with greater outreach and a longer application period, we would have received many more requests than that. MDDC is assessing the results of this project with an eye towards how to support broadening access to technology for people with developmental disabilities in the future.

This project gave us much useful data to better understand how getting access to technology changes the lives of people with developmental disabilities. We worked with a Boston University student, Margaret Carter, who helped collect this data and analyzed our results. Here is a slide that expresses her findings:

Poster of DD Access to Tech Findings - text below

Language on Poster:

Facilitating Engagement in Virtual Social Participation for Individuals

with Intellectual and Developmental Disabilities

Margaret Carter, OT/s

Robin Newman, OTD, OTR, CLT, FAOTA; Rachel Dyer, Associate Director of the Maine Developmental Disabilities Council

Department of Occupational Therapy

Background

Individuals with intellectual and developmental disabilities (IDD) experience:

Higher rates of loneliness⁷
Less access/lower rates of digital technology use^5,6

COVID-19 Pandemic

Physical distancing increases risk of loneliness²
Digital technology is critical to engage in virtual social participation

Amid pandemic, individuals with IDD are less likely to engage in virtual social participation using digital technology and are at a greater risk for loneliness

Theoretical Basis

Universal Design for Learning (UDL)

Knowledge to Action (KTA) Framework

Description of the Project

iPads – 147 individuals with IDD receive iPads

Observation – Observe existing Zoom groups for individuals with IDD

Assistance – Assist participants (individuals with IDD and/or staff) with technical support as needed

Data – Gather and analyze data from surveys and focus groups

Conclusion – Compose report with conclusions and recommendations

Outcomes

114 participants responded to two online surveys approximately 1 and 2 months after receiving iPad

At conclusion of iPad project:

94% Strongly Agree that they are satisfied in participating in the iPad project
95% Always or Often feel good when using the iPad to connect with people
83% can access services Much More than Before or Somewhat More than Before

-Telehealth

-Day programs

-Contact with case managers and providers

Themes from qualitative data:

The iPad helps people connect with family and friends and access services
People like using it to connect with others, feel less lonely, and like the video aspect
Using the iPad, keeps people engaged in games, leisure, educational, and social participation activities
People felt thankful, special, and lucky for receiving an iPad

Conclusions

Providing individuals with IDD with iPads in conjunction with family/staff support, technology assistance, and accessible resources facilitated:

Engagement in virtual social participation
Participant satisfaction in program

Future directions include:

Development of a virtual social participation group on Zoom led by an occupational therapist (OT)
OT led trainings for staff/family members to support people with IDD in using technology

Letter Regarding Family Inclusion in Discussions of School Reopenings

This letter, co-signed by our organization as well as Maine Parent Federation and the Autism Society of Maine, was recently sent to the Maine Department of Education, the legislative members of the Appropriations and Financial Affairs and Education and Cultural Affairs Committees, and local media outlets. For a pdf version of this letter, click here.

To Whom it May Concern

On many levels, Maine is struggling with how to raise our children in the midst of a pandemic. How will the economy reopen? How can we prevent getting sick? What about childcare? And the all-important question, how will schools reopen?

It appears that children are generally less affected by COVID-19, but there is also the concern about their parents and caregivers, as well as school staff and teachers, especially those in high risk groups. “What is the best way to balance those needs?” has been echoed through the news, social media feeds, and by our national, state and local government leaders. But how does COVID-19 affect the 23% Maine children who have special healthcare conditions? [1]

COVID-19 is still a very young virus. We don’t know much about how it affects us. However, research is finding that children with underlying health conditions are much more at risk for complications and severe illness from COVID 19 than children without underlying conditions.[2] For example, one study found children with Intellectual or Developmental Disabilities much more likely to have a more severe reaction to COVID-19[3], while another study showed that COVID-19 may be exacerbated in children with asthma (7.5% https://www.cdc.gov/nchs/fastats/asthma.htm) and recommends that these children should be watched carefully.[4]

State-level discussions regarding the reopening of schools have not included representatives of these children with special healthcare needs. As a result, these children’s needs are not being included in reopening plans, putting them at a higher risk level. The recent Maine Department of Education survey did not include questions about disability nor provided an option for families of children with disabilities and/or special health care needs to share their concerns. Even the National American Academy of Pediatrics statement about children and schools included only one statement about children with disabilities. This is extremely disturbing, as children with disabilities are likely to be most negatively impacted by COVID-19. These are some of the same children who receive services and supports that allow them to access their education. These services are often impossible to provide or are less effective remotely and are best provided by qualified professionals. The parents who have access to technology and the energy to try to be their child’s therapist as well as their parent and teacher still fall short, this does not account for families who are unable to provide access or support for many reasons. In both cases their children fall (farther) behind.

Where is the representation of these children in the conversations about community and school openings? Do these children not matter as much as other children?

Recently, the Maine Parent Federation asked the Department of Education to join the taskforce to develop Maine’s Framework for Returning to Classroom Instruction. A Department representative replied by email on July 8 that the taskforce “included many educational stakeholders with varied perspectives from special services, transportation, curriculum directors, health services, among many others. The draft framework is a work in progress. We are continuing to work with partners across the state and are strongly encouraging local conversations of parents with school leaders as they develop their local community plans.” They later encouraged Maine Parent Federation to participate in the survey. The taskforce lacked the parent with disability voice so, we can only assume, that they didn’t think about asking questions that will affect 23% of children in Maine.

The Autism Society of Maine, Maine Developmental Disabilities Council, and Maine Parent Federation receive private, state, and federal funds to advocate, in part, with, for, and on behalf of these children and their families. MDDC and MPF receive public funding to serve as representatives of parents, yet they have not even been invited into the discussion.

Students with disabilities need to be represented. If they are not represented in reopening plans, then their needs will not be met. At best, they will not get the education they need to thrive as contributing members of Maine communities. At worst, they will be at higher risk from Covid-19. This is a difficult time for all of us. For families of children with special healthcare needs, it is a particularly scary time.

So, we ask: why are 23% of students, those who are so much more likely to be negatively impacted by this pandemic, not being represented in re-opening decisions?

Thank you for your consideration,

Autism Society of Maine - Cathy Dionne - Executive Director, This email address is being protected from spambots. You need JavaScript enabled to view it. - www.asmonline.org

Maine Developmental Disabilities Council - Nancy Cronin - Executive Director, This email address is being protected from spambots. You need JavaScript enabled to view it. - www.maineddc.org

Maine Parent Federation - Carrie Woodcock - Executive Director, This email address is being protected from spambots. You need JavaScript enabled to view it. - www.mpf.org

[1] Maine Children with Special Healthcare Needs https://www.maine.gov/dhhs/mecdc/population-health/mch/documents/MAINE-CSHCN-HEALTH.pdf Accessed on July 14, 2020

[2] Harvard Medical School (July 2, 2020) Coronavirus Outbreak and K

ids: https://www.health.harvard.edu/diseases-and-conditions/coronavirus-outbreak-and-kids Accessed on July 14, 2020

[3] Turk, Margaret A et. al. (May 24, 2020) Intellectual and Developmental Disability and COVID-19 case – fatality trends https://www.sciencedirect.com/science/article/pii/S1936657420300674?via%3Dihub Accessed on July 14, 2020

[4] Barsoum, Zakaria (May 19, 2020) Pediatric Asthma & Coronavirus (COVID-19) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7235436/ Accessed on July 24, 2020

Statement on Nationwide Protests

10 June 2020

The Maine Developmental Disabilities Council stands in solidarity with those peacefully protesting institutionalized racism against people of color in our country. We recognize and understand the anger and frustration that stems from centuries of oppressive policies and know that none of us are free until all of us are free. Black Lives Matter - systems that support racism must be dismantled.

Like people with developmental disabilities, people of color are at higher risk for contracting and dying from COVID-19 – the Maine Developmental Disabilities Council recognizes that we all must work to reduce disparities in access to care and disparities in health care outcomes.

Like people with developmental disabilities, people of color are at risk for an escalated response in an encounter with law enforcement – the Maine Developmental Disabilities Council believes that change begins with acknowledgement of risk, better training and more accountability.

Like people with developmental disabilities, people of color are more likely to live in poverty and lack access to safe housing, quality food, and effective education – we must all work to create equity and accessibility for all people.

While we see the interconnectedness around issues that affect all vulnerable populations, the Maine Developmental Disabilities Council believes that the blight of racism in our communities is one that needs specific remedies that call for the voices, stories, and leadership of people of color. Our hope is that our leaders and policy makers will listen to, learn from, welcome and support leaders with lived experience of racism to create real and lasting change towards a more just world.

The Maine Developmental Disabilities Council is committed to creating a Maine in which all people are valued and respected because we believe communities are stronger when everyone is included.

Click here for a pdf of this statement

Council Letter to the Maine CDC

on the treatment of people with developmental disabilities during the COVID pandemic

The Maine Developmental Disabilities Council is very concerned about the treatment of people with developmental disabilities during this pandemic. One of our particular concerns is around equitable access for people with developmental disabilities to healthcare right now - making sure that they can get the accommodations they need to understand their doctors and their options, and pushing back against a culture that does not always value the lives of people with developmental disabilities.

Our executive director, Nancy Cronin, recently sent this letter to the head of the Maine CDC, Dr. Shah, explaining our concerns and pushing for clear guidance from leaders on providing adequate care to people with developmental disabilities - please click here to read it.

Corona Virus/COVID-19 Information

for People with Disabilities and their Families

MDDC is committed to continuing to support Mainers with developmental disabilities through this unprecedented and stressful time. We will be working to ensure that the systems that care for and protect people with developmental disabilities in the state are communicating with their constituents effectively, working safely to mitigate the spread of the virus, and getting people the support they need.

We have also adjusted our office policies in light of this crisis. Please click here to read about the safeguards we have put in place to protect our employees, Council members, and the public.

Plain language infograph from SDCC (California DD Council) on best practices to prevent the spread of germs

Plain Language Guide –

Green Mountain Self-Advocates have written an 8 page booklet to teach you all about the corona virus in plain language: https://selfadvocacyinfo.org/wp-content/uploads/2020/03/Plain-Language-Information-on-Coronavirus.pdf

Our sister agency, Disability Rights Maine, has put together a list of resources specific to the disability community:

https://drme.org/news/2020/covid-19-resources-for-pwd

Speaking Up For Us (SUFU), our statewide self-advocacy organization, also has a page with resources and information about upcoming phone and video webinars to keep you connected:

http://sufumaine.org/blog/2020/03/19/2594/

The Autism Society of Maine also has a page with resources supporting families, with both information and lots of activities and educational opportunities for kids at home:

https://www.asmonline.org/News/107/Article/8686/

The 5210 Let's Go! Program from Maine Health has put out a list of resources specific to the DD/IDD community for staying healthy and fit during this time of social distancing - click here to see it!

This plain language video does a great job of explaining how the virus can be transmitted:

For ongoing updates on COVID-19, go to Maine CDC’s webpage:

https://www.maine.gov/dhhs/mecdc/

Our federal parent organization, the Administration for Community Living (ACL) has a page with a plethora of COVID resources:

https://acl.gov/COVID-19

2020 Inclusion Winners confetti

A huge congratulations to the winners of this year's Inclusion Awards!

Look for posts on our Facebook page in the next few weeks highlighting the wonderful works of these talented students!

1st Place Essay
Kayla Collins of Windham, for “What I have Learned About Inclusion”

2nd Place Essay
Vanessa Woods of Augusta, for “My Sister”

3rd Place Essay
Hannah Richardson of Augusta, for “Easy as 1, 2, 3”

Honorable Mention Essay
Anna Reny of Gardiner, for “The Sound of Acceptance”

1st Place Artwork
Magnolia Sinisi of Freeport, for “A Day in the Park”

2nd Place Artwork
Aurora Burmeister of Ellsworth, for “Cultivate Inclusion”

3rd Place Artwork
Reagan Davis of Freeport, for “Together We’re a Masterpiece”

Honorable Mention Artwork
Kaitlyn Sawicki of Freeport, for “Putting the Pieces Together”

And a special congrats to Kimberly Medsker-Mehalic, who was awarded a Commitment to Inclusion grant for her work at Freeport High School to bring inclusion into her curriculum and teaching!

MDDC's 2020 Annual Report in Newspapers Across the State

The Maine Developmental Disabilities Council is pleased to present a very special publication that speaks to the work we do, and containing stories from Mainers with developmental disabilities that span a lifetime of issues that affect them, from school to work to aging in the community. This news insert is being placed in newspapers all over Maine, with particular emphasis on underserved populations in rural counties.

We are so proud of this pamphlet and of the people who allowed us to tell their stories. This is a vivid snapshot of the state of the systems that serve people with developmental disabilities in Maine and the effects those systems have on those people. Thanks to N&R Publications for helping us put this together!

We have an accessible pdf version of this publication available here: MDDC 2020 Newspaper Insert

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