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

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.

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 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

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

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

MDDC is a partnership of people with disabilities, their families, and public and governmental agencies which promotes and advocates for equal opportunities for persons with developmental disabilities to participate in every aspect of community life.

NACDD Executive Director Leadership Summit in Little Rock, Arkansas

Our executive director, Nancy Cronin, had a fantastic time with her cohorts from around the country at this year's Executive Director Leadership Summit! Thanks to the folks at NACDD for putting this together and giving our executive directors a chance to talk about the work they are doing in their respective Councils.

Council Executive Directors on steps in the Governor's Mansion in Arkansas

The group got a chance to visit the Little Rock Central High School, the school where the Little Rock Nine were escorted by the National Guard in 1957 to desegregate that school.

FASD Group Forming in Maine!

This past Monday, Sept. 6 — in recognition of international FASD awareness day — saw the launch of FASD Maine, a group for anyone affected by or involved with fetal alcohol in Maine.  

If you are interested in being involved with or following their work, you can join their new Facebook group here: https://www.facebook.com/groups/463838167530594/

FASD Infographic Text: 

Alcohol use during pregnancy can lead to lifelong effects.

Up to 1 in 20 US school children may have FASDs.

People with FASDs can experience a mix of the following problems:

Physical issues

• low birth weight and growth
• problems with heart, kidneys, and other organs
• damage to parts of the brain

Which leads to…

Behavioral and intellectual disabilities

• learning disabilities and low IQ
• hyperactivity
• difficulty with attention
• poor ability to communicate in social situations
• poor reasoning and judgement skills

These can lead to…

Lifelong issues with

• school and social skills
• living independently
• mental health
• substance use
• keeping a job
• trouble with the law

Drinking while pregnant costs the US $5.5 billion (2010)

Sources: CDC Vital Signs, February 2016. American Journal of Preventive Medicine, November 2015