DOWN SYNDROME ASSOCIATION OF GREATER ST LOUIS

Serve. Support. Celebrate

aka DSAGSL   |   St. Louis, MO   |  www.dsagsl.org
GuideStar Charity Check

DOWN SYNDROME ASSOCIATION OF GREATER ST LOUIS

EIN: 43-1108833


Mission

Our mission is to serve, support and celebrate the lives of all individuals with Down syndrome and their families, through every stage of life.

Ruling year info

1977

Executive Director

Ms. Erin Suelmann

Main address

1300 Strassner Dr.

St. Louis, MO 63144 USA

Show more contact info

EIN

43-1108833

Subject area info

Diseases and conditions

Down syndrome

Special population support

Developmental disability services

Population served info

Families

Caregivers

People with intellectual disabilities

People with learning disabilities

NTEE code info

Down's Syndrome (G25)

Alliance/Advocacy Organizations (G01)

What we aim to solve

SOURCE: Self-reported by organization

Briefly stated, the DSAGSL is aiming to lay a strong foundation for our organization based in best practice and look internally at our policies, procedures, and data collection in order to ensure we are serving all individuals with Down syndrome and their families to the best of our abilities. In addition we are looking inward to ensure we are able to recruit and retain excellent staff, volunteers and board members.

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?

Community Groups

DSAGSL offers small, volunteer-led community groups around Eastern Missouri and Southern Illinois in order to provide programs and services in geographic regions outside of Metro St. Louis. We also offer community groups based on common interests and cultural backgrounds.

Population(s) Served

DSAGSL offers celebration baskets, mentorship, new family connection events, resources, support, private Facebook support groups, and home / hospital visits for all new families with a baby diagnosed with Down syndrome.

Population(s) Served

DSAGSL offers training and resources for health professionals including genetic counselors, OBGyns, pediatricians, family physicians, and specialists. The goal of these trainings and resources is to enable health professionals to deliver diagnoses in the most appropriate manner and offer the best possible care to individuals with Down syndrome.

Population(s) Served

DSAGSL offers online and mailed resources to any family member in search of information related to Down syndrome. We also offer a physical library from which community members can check out books.

Population(s) Served

DSAGSL provides educational professional trainings both in the school setting as well as through our summer education specialist boot camp program. Topics covered include Down syndrome 101, behavior tips, using visuals, technology, health conditions that affect learning, etc. We also offer classroom presentations to students in order to increase inclusion of people with Ds.

Population(s) Served

DSAGSL provides online and in person training and conferences to caregivers about a variety of topics related to Down syndrome. Topics include financial planning, guardianship and supported decision making, health conditions, toilet training, behavior strategies, etc.

Population(s) Served

DSAGSL provides in person and online programs to build and maintain skills in individuals with Down syndrome. Programs include Small Steps Therapy Program in MO and IL which includes music and gross motor therapy. Additionally, we offer online music therapy for children, online ukulele club and improv club for teens and adults with Down syndrome, online conversation club for adults with Down syndrome as well as in-person skill building programs Fusion Friday and Lifelong Learning program for adults with Down syndrome.

Population(s) Served

In addition to specific support for new families, DSAGSL prides itself on offering high quality support and care for families of individuals with Down syndrome at any stage on their journey. We offer online support and resource groups, family events, mom's and dad's nights out, holiday help, crisis assistance, phone and email support, benefits navigation, and more.

Population(s) Served

Where we work

Accreditations

Better Business Bureau Accredited 2022

Better Business Bureau Accredited 2021

Awards

2022 TORCH Award 2022

Better Business Bureau

Affiliations & memberships

GLOBAL Down Syndrome Foundation Member 2022

National Down Syndrome Congress Member 2022

Down Syndrome Affiliates in Action Member 2022

United Way of Greater St. Louis 2022

Productive Living Board of St. Louis County 2022

St. Charles Developmental Disabilities Resource Board 2022

Disability Resource Board of St. Louis City 2022

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 clients who self-report increased skills/knowledge after educational program/intervention

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

100 % of participants who answered the survey said that their skills / knowledge increased.

Percentage of people who better understand their loved one's Ds diagnosis

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

84% of parents better understand their loved one's diagnosis after participating in a DSAGSL education program.

Number of families who report they are supported in utilizing natural supports in their communities (e.g., family, friends, neighbors, churches, colleges, recreational services)

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

100% of participants state that they better understand and utilize available supports after participating in DSAGSL's educational programs.

Number of customers reporting satisfaction with program

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

100% of participants reported satisfaction with programs.

Number of youth who demonstrate that they have developed a strong sense of self

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

100% of participants report increased sense of self and self-confidence after participating in programs.

Number of youth who demonstrate that they have developed social skills (e.g., interpersonal communication, conflict resolution)

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

100% of participants reported that they have developed skills from participating in programs.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

The DSAGSL has three goals with our current strategic plan: 1) Know and Understand our Members; 2) Create a Roadmap for Excellence; 3) Advance Racial Equity in the DSAGSL Community.

1. Goal: Know our Members and Partners
Objective 1. A. by mid-2022 have defined all services, and contact types and mapped 100% of families in database.
Objective 1.B By the fourth quarter of 2022, have identified and prioritized data needs and how to accurately collect this information.
Objective 1.C By the fourth quarter of 2022, have updated 90% of family records in the database and have a system for accurate data collection
Objective 1.D By the end of 2023, have designed, deployed, and analyzed a comprehensive needs assessment for the Ds community to inform future decision making and set programmatic priorities.

2. Goal: Create a Roadmap for Excellence
Objective 2.A. By the end of 2023, have developed logic models for programs and communications as well as a strategy screen to ensure programs meet desired outcomes.
Objective 2.B. By the end of 2023, have established and implemented a communication plan to enhance brand and articulate key messages to specific constituencies.
Objective 2.C. By the end of 2023, have created and implemented a resource development plan to grow and diversify revenue.
Objective 2.D. By the end of 2023, have created indicators for operational excellence as well as documented policies, practices, and processes.
Objective 2.E. By the end of 2023, identify needs in staff, board, and volunteers, and develop a plan to attract and retain qualified individuals for these positions.

3. Goal: Advance Racial Equity in the DSAGSL Community
Objective 3.A. By mid-2022, have collected and disaggregated 80% of data pertaining to race and ethnicity among DSAGSL family members.
Objective 3.B. By the end of 2021, have conducted internal assessment of all organizational policies and procedures as they relate to racial equity and evaluate annually.
Objective 3.C. By the end of 2023, have increased touchpoints between communities of color and the DSAGSL by 50%

- Create strong committees in order to conduct the activities to reach objectives and goals
- Assess database needs and convert to a new CRM database for membership demographic / donation collection
- Conduct a DSAGSL census to gather updated demographic data on members
- Disaggregate data and assess gaps
- Review and revised DSAGSL policies and procedures and update as necessary
- Assess ROI of DSAGSL fundraising strategies and assess gaps in revenue generation
- Create a new development plan
- Conduct a brand analysis of DSAGSL brand
- Create new options for DSAGSL branding. Test. Implement new communications strategies.
- Conduct member program satisfaction survey and subsequent focus groups.
- Assess data from these surveys and focus groups and develop recommendations to the board.
- Work with an outside firm to conduct a salary and benefits analysis. Make recommendations to the board for compensation parity.
- Develop an African American community group and Latinx community group and hold activities accordingly to increase touchpoints with these communities.
- Develop relationship with translation services and ensure translation of materials as necessary and a page on our website is translated into Spanish.
- Hold Board retreat to review all data and make plans for future strategic planning

Our organization has a growing budget that allows us to pursue new opportunities each year. We have a highly professional staff that is innovative and forward-thinking, and has a mix of parents, siblings and friends of individuals with Down syndrome. In partnership with a diverse, visionary Board, we are creating lofty goals and bringing new partners into the fold to help us achieve our vision of helping individuals with Down syndrome achieve their full potential.

As members of Down Syndrome Affiliates in Action (DSAIA), GLOBAL Down Syndrome Foundation, National Down Syndrome Society (NDSS) and National Down Syndrome Congress (NDSC), we are plugged into national trends and a network of colleagues that allow us to measure our program quality on a regular basis. We also constantly and actively seek out community partners in St. Louis that care about people with disabilities and help us to expand our ability to serve the population.

DSAGSL is the only organization in the St. Louis region solely dedicated to serving individuals with Down syndrome from birth to end of life and we are the most comprehensive source of information about Down syndrome in the region as well.

Over the past three years, even through a pandemic, we have continued to increase our budget and raise more funds through special events, new local grants, and United Way Funding. We are developing and pursuing new strategic funding partnerships in order to diversify funding. We have also moved yet again to an even larger space in order to serve more families, more effectively. We have hired three new staff and have grown programs by nearly 100%

In August, 2022 the board assessed all of the data collection from our strategic plan and made the decision to invest in three new staff which will help us continue to raise diverse funds, and to serve members who have been traditionally underserved (geographically and culturally).

Finally, in the last year alone, DSAGSL has won two major awards - the Better Business Bureau TORCH Award for Ethics and the St. Louis Headliner Award - Top 3 best nonprofits in the region. We have staff that present at annual conferences annually and have staff that serve on boards and committees on both a local and national scale.

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.
  • Who are the people you serve with your mission?

    Individuals with Down syndrome of all ages, their caregivers/ family members, as well as educators and health professionals

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

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Case management notes, Community meetings/Town halls, Suggestion box/email,

  • 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 make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    The DSAGSL held listening sessions in the spring of 2022. In addition to electronic survey data, we used this information to inform our board retreat discussions and the investment in new programs across the region as well as an investment in DEI work.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders,

  • How has asking for feedback from the people you serve changed your relationship?

    By hosting listening sessions among traditionally underserved communities - both ethnic/ racial and geographic and then showing the changes we are making based on their feedback, we have strengthened trust with the people we serve and investment by them in our organization.

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

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, 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, getting traditionally underserved individuals to respond,

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2020 info

SOURCE: IRS Form 990

69.32

Average of 14.54 over 10 years

Months of cash in 2020 info

SOURCE: IRS Form 990

4.5

Average of 7.3 over 10 years

Fringe rate in 2020 info

SOURCE: IRS Form 990

10%

Average of 9% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

Source: IRS Form 990 info

DOWN SYNDROME ASSOCIATION OF GREATER ST LOUIS

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990

Fiscal year ending: cloud_download Download Data

DOWN SYNDROME ASSOCIATION OF GREATER ST LOUIS

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

DOWN SYNDROME ASSOCIATION OF GREATER ST LOUIS

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990

This snapshot of DOWN SYNDROME ASSOCIATION OF GREATER ST LOUIS’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

Created in partnership with

* This organization changed its fiscal year accounting period in 2017. Please refer to its 2017 990s for more information.

Business model indicators

Profitability info 2016 2017 * 2018 2019 2020
Unrestricted surplus (deficit) before depreciation $116,689 $42,801 -$49,989 $129,039 $147,082
As % of expenses 17.7% 6.9% -8.3% 19.0% 24.7%
Unrestricted surplus (deficit) after depreciation $114,665 $40,654 -$51,972 $127,783 $143,042
As % of expenses 17.4% 6.5% -8.6% 18.8% 23.8%
Revenue composition info
Total revenue (unrestricted & restricted) $774,145 $664,343 $552,606 $768,610 $641,765
Total revenue, % change over prior year 2.3% -14.2% -16.8% 39.1% -16.5%
Program services revenue 11.0% 15.7% 19.6% 6.8% 6.4%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 3.6% 3.9% 6.1% 5.4% 6.2%
Government grants 0.0% 0.0% 0.0% 0.0% 0.0%
All other grants and contributions 85.8% 72.7% 86.5% 87.2% 85.7%
Other revenue -0.4% 7.7% -12.2% 0.6% 1.7%
Expense composition info
Total expenses before depreciation $657,456 $620,515 $602,593 $679,769 $596,359
Total expenses, % change over prior year -7.2% -5.6% -2.9% 12.8% -12.3%
Personnel 36.5% 38.1% 47.8% 45.7% 57.1%
Professional fees 11.3% 14.2% 7.8% 4.5% 6.6%
Occupancy 5.6% 5.4% 6.1% 5.7% 7.0%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 0.0% 0.0% 0.0% 0.0% 0.0%
All other expenses 46.6% 42.4% 38.3% 44.1% 29.3%
Full cost components (estimated) info 2016 2017 2018 2019 2020
Total expenses (after depreciation) $659,480 $622,662 $604,576 $681,025 $600,399
One month of savings $54,788 $51,710 $50,216 $56,647 $49,697
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $3,000 $0 $0 $18,000
Total full costs (estimated) $714,268 $677,372 $654,792 $737,672 $668,096

Capital structure indicators

Liquidity info 2016 2017 2018 2019 2020
Months of cash 5.3 8.0 3.9 4.6 4.5
Months of cash and investments 20.3 22.6 19.7 20.8 24.9
Months of estimated liquid unrestricted net assets 19.8 21.7 19.7 19.8 25.1
Balance sheet composition info 2016 2017 2018 2019 2020
Cash $288,482 $411,670 $194,397 $261,938 $222,670
Investments $823,741 $757,466 $793,929 $918,956 $1,014,769
Receivables $322 $0 $0 $0 $0
Gross land, buildings, equipment (LBE) $38,604 $41,604 $41,604 $41,604 $59,603
Accumulated depreciation (as a % of LBE) 89.9% 88.6% 95.8% 98.8% 75.8%
Liabilities (as a % of assets) 3.0% 4.5% 3.1% 3.6% 1.4%
Unrestricted net assets $1,088,240 $1,128,894 $992,620 $1,120,403 $1,263,445
Temporarily restricted net assets $0 $1,027 $0 N/A N/A
Permanently restricted net assets $0 $0 $0 N/A N/A
Total restricted net assets $0 $1,027 $0 $40,000 $7,000
Total net assets $1,088,240 $1,129,921 $992,620 $1,160,403 $1,270,445

Key data checks

Key data checks info 2016 2017 2018 2019 2020
Material data errors No No No No No

Operations

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

Documents
Form 1023/1024 is not available for this organization

Executive Director

Ms. Erin Suelmann

Erin Suelmann served joined the DSAGSL in 2012 as Director of Programs and was promoted to Executive Director in 2016. She has a Masters in Public Health and a Master's in Anthropology from the University of Arizona. She has worked in the nonprofit sector since 2009 and is passionate about the Down syndrome community because her brother, Andrew, happens to have Down syndrome.

Number of employees

Source: IRS Form 990

DOWN SYNDROME ASSOCIATION OF GREATER ST LOUIS

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

DOWN SYNDROME ASSOCIATION OF GREATER ST LOUIS

Board of directors
as of 11/10/2022
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Mr. Greg Szczepan

Arch Resources

Term: 2015 - 2023

Greg Szczepan

Arch Coal

Andy Conover

St. Louis Life

Paula Mass

No Affiliation

Michelle Abounader

No Affiliation

Chris Canfield

AppDynamics

Kevin Courtney

Triad Manufacturing

Matthew Floyd

Attorney, Self Employed

Dain Giesie

Enterprise Fleet Management

Brian Hadican

Enterprise Bank and Trust

Elizabeth Hall

Nurse Practitioner

Matthew Kane

Wells Fargo

Renata Keys

Paul Mitchell

Raymond Kleeman

RGA Reinsurance Company

Jesseca Leggett

Washington University

Rochelle Nichols

Greater St. Louis Oral Surgery

Joe Niemeyer

Retired, Hager Company

Ali Siegel-Kerins

160over90

Jonathan Waldron

Stinson LLP

Allie Wargel

Edward Jones

Claire Watson

Community Counseling Center

Dwayne Worley

IT Architechs

Anna Hartweger

Physician, St. Louis County Health

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? No

Organizational demographics

SOURCE: Self-reported; last updated 11/9/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

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

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

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

Equity strategies

Last updated: 11/09/2022

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

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.