GOLD2024

Down Syndrome Association of Connecticut, Inc

Many Hearts, One Voice

aka Connecticut Down Syndrome Congress, Inc   |   Pawcatuck, CT   |  www.mydsact.org

Mission

Our Mission To improve the lives of people with Down syndrome, by promoting equity, opportunities, inclusion, and by empowering them and their families in all aspects of life.

Ruling year info

1987

Executive Director

Ms Shanon Marie McCormick

Main address

PO Box 1082

Pawcatuck, CT 06379 USA

Show more contact info

Formerly known as

Connecticut Down Syndrome Congress, Inc

EIN

06-1176478

NTEE code info

Down's Syndrome (G25)

Alliance/Advocacy Organizations (G01)

Fund Raising and/or Fund Distribution (Y12)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Our vision is a world where people with Down syndrome are supported and empowered. Our mission is to encourage intentionally inclusive communities while providing resources and support to individuals who live with Down syndrome and their advocates.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

First Call -- New Parents and Siblings

We provide emotional support, information and referrals to new and expectant parents who have recently received a diagnosis of Down syndrome. We have trained volunteers across the state available to talk with new and expectant parents and to provide medical outreach to organizations and professionals. We also provide one-to-one peer support to siblings of babies with Down syndrome.

Population(s) Served
Families
Infants and toddlers

This is a series of workshops and educational events conducted online and in-person for advocates, caregivers, professionals, and support providers focusing on best practices in educational, therapeutic, and medicinal intervention for people who live with Down syndrome.

Population(s) Served
Families
People with disabilities

This is a members' only event held each summer to provide an opportunity for networking and family fun.

Population(s) Served
Families
People with intellectual disabilities

An annual awareness event and fundraiser open to the public. There is a short, accessible walk, followed by an afternoon of family fun. Entertainment includes a DJ, clowns, arts and crafts activities, and games.

Population(s) Served
People with intellectual disabilities
Families

During March, in collaboration with the New Canaan YMCA, we offer a public afternoon program of fun and activities, featuring individuals who have Down syndrome as demonstrators and program supporters; we also offer a second, similar event focusing on art in collaboration with the Knights of Columbus Museum in New Haven.

We donate books about Down syndrome to schools and libraries and support parent-driven awareness efforts in their communities with materials and social media support.

Population(s) Served
Families

A facilitated group for individuals with Down syndrome age 16 and older. Programming provides an opportunity for socialization while developing and reinforcing soft skills important to independent living and employment.

Population(s) Served
People with intellectual disabilities

An academic support center that provides one-to-one and small-group tutoring to children and adults who have a Down syndrome learning profile. School districts are supported by providing reasonably priced independent evaluations and professional development. Research is conducted to identify educational best practices and results are published in peer-reviewed journals.

Population(s) Served
People with intellectual disabilities
Academics

We support opportunities for community integration and inclusion of individuals who live with Down with grants of up to $500.

DS ACT members who have Down syndrome are awarded grants of up to $500 to apply toward summer camp tuition. This provides an opportunity for growth and independence for the individual and respite for the family.

Population(s) Served
Families
Children and youth

We collaborate with the Connecticut Parent Advocacy Center to provide one-to-one mentoring to parents and guardians of school-aged children with Down syndrome. Participants learn how to read an individualized education plan (IEP), how to analyze school programming and their child's progress, how to advocate for necessary supports and services, and how to work collaboratively with school personnel to achieve educational goals.

Population(s) Served
Parents

We provide emotional and social support and information to families who live with Down syndrome. We hold social events for our members, and sponsor a network of regionally-based family support groups.

Utilizing personal donations, personal connections and some DS ACT resources, we also provides highly individualized “under the radar” support to families in need ranging from those encountering financial hardship to those with a loved one in the hospital who need a small pick-me-up.

Population(s) Served
Families
Parents

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of attendees present at rallies/events

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, Children and youth, Caregivers, Families, People with intellectual disabilities

Related Program

World Down Syndrome Day: Raising Awareness

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our largest public awareness event is our Step Up Walk. Due to the pandemic in 2020, we were forced to hold it "virtually," and with reduced admission in 2021.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

We want to support individuals in Connecticut who live with Down syndrome and their families through friendship, education and advocacy.

We challenge stereotypes by providing accurate information about Down syndrome to the public. We support new and expectant parents in making connections to the information and resources that will give their baby an opportunity to thrive.

We help schools and families work collaboratively to identify educational needs presented by a student's learning profile and we advise them on strategies and resources.

We help teens and adults with Down syndrome to connect for mutual support while learning through targeted programming and we support their parents and/or guardians through conversation and meetings.

We established our Literacy and Education Center to support students with a Down syndrome learning profile directly through highly individualized tutoring; to foster excellence in Connecticut schools through professional development and mentoring; and to identify best practices in education for students with intellectual disabilities through research and pre-service training in collaboration with academic institutions.

One of our strengths is our willingness to collaborate with other organizations and individuals to deliver the programming and support our community requires. We pride ourselves in NOT reinventing the wheel. We are building a culture of learning among staff and volunteers so that we can continue to lead in meeting the needs of people with Down syndrome as our understanding of it changes with scientific research.

Our Literacy and Education Center program and research coordinators are nationally recognized for their expertise and may have more hands-on experience in working with the Down syndrome learning profile than almost anyone else in the country.

We have a strong, passionate board of directors and a membership committed to helping us support ourselves financially.

By rapidly changing our programs to virtual delivery, we continue to support individuals with Down syndrome and their families throughout the pandemic. Our teen and adult group shifted from in-person meetings every other month to weekly online meetings in response to a greater need for social and emotional support. We provided small emergency grants to some families and helped others locate services.

Our Literacy and Education Center delivered one-to-one tutoring remotely, documenting continued progress among students where schools struggled. Our staff developed methods for remote learning that have been shared with public school teachers and reported on at a national conference. We have mentored many families through the independent education process.

We have successfully recruited new, highly skilled board members from outside of the Down syndrome community, and have begun doing the work necessary to support a more diverse board and membership.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, Staff find it hard to prioritize feedback collection and review due to lack of time, It is hard to come up with good questions to ask people, It is difficult to identify actionable feedback

Financials

Down Syndrome Association of Connecticut, Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Down Syndrome Association of Connecticut, Inc

Board of directors
as of 06/22/2024
SOURCE: Self-reported by organization
Board chair

Ms Beth Gard

Parent of a child with DS

Term: 2021 - 2023

Phoenix Lombardi

Travelers

Beth Emerson

BioPharma

Jason Messina

Marcum, LLP

Elaine Ho

Aetna

Rachel Lorenz

Pratt & Whitney

Denise Curran

Parent of a Child w DS

Mary Ellen Manning

Consolidated School District of New Britain

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 3/25/2022
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 03/25/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.