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Down Syndrome Association of Delaware

aka DSA of DE   |   Middletown, DE   |  www.dsadelaware.org

Mission

The Down Syndrome Association of Delaware's mission is to be a resource promoting public awareness, education and advocacy supporting individuals with Down syndrome and their families.

Ruling year info

2006

Executive Director

Ms Lauren Camp Gates

Main address

Po Box 747

Middletown, DE 19709 USA

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EIN

20-1874295

NTEE code info

Alliance/Advocacy Organizations (E01)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We estimated there are 400 people with Down syndrome in Delaware alone. We work to address the lack of knowledge and understanding surrounding Down syndrome.

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?

Days of Summer Camp

The Days of Summer Camp was started in 2012 with a small group of about twenty children and has grown into a large summer day program. The goal of the camp is to allow children with Down syndrome the opportunity to have the experiences of summer camp while practicing independence, developing physical and emotional health as well as increasing their confidence levels. We strive to maintain an atmosphere where children can build great peer relationships as well as have a fun experience at camp!

Population(s) Served
People with disabilities
Children and youth

Where we work

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 Down Syndrome Association of Delaware partners with families and others to create an environment in which individuals with Down syndrome are welcomed and included with fairness, enthusiasm, and encouragement in the community. Together we share knowledge and experiences with other families, and support new parents. We promote the need to continue to educate ourselves, medical and educational professionals, and the public about Down syndrome. We embrace all of the things our children can do and their potential to be an integral part of our local communities. We believe that diversity should be embraced, not merely tolerated, because the entire community benefits when individuals with differences are valued and included in our communities.

PRIORITIES AND STRATEGIES
PROGRAMMING
• Establish consistent and regular programing to meet the three Age-group Areas.
• Collaborate and support other organizations (DFRC, Best Buddies, Special Olympics) in their missions to meet the needs of individuals with Ds.
• Empower families through connections, information and education.
• Be a point of contact and support for families receiving a new diagnosis of Ds as well as other medical challenges.
• Participate and sponsor local and regional conferences which support inclusive education, transition, special education, disability issues.
• DSA of Delaware will become a resource for educators. Host a regional educational conference targeting families, educators and service providers.
MARKETING
• Increase awareness to individuals with Down syndrome as well as their families and other potential supporters of our mission.
• Redesign the website to align with new programming, include clearly stated Mission, Vision and Organizational Objectives and goals.
• Capitalize on the use of technology, develop Quarterly Newsletter and Brochure.
• Support fundraising and programming efforts to ensure a consistent voice.
• Increase awareness in the broader community.
• Participate in Carol A. Ammon Case competition at UD.
• Improve constituent management system.
DEVELOPMENT
• Increase revenue by 10% gross year to year to increase programs and services
• Grow the % of Major Gifts ($1K or above) to 5% or more of our budget.
• Launch a Planned Giving program.
• Improve our communication strategy for development purposes.
• Enhance current fundraisers by increasing corporate sponsorship.
• Decrease fundraising event expenses.
• Increase grant writing.

Committees
The Down Syndrome Association of Delaware has a variety of committees that help fulfill our mission.  Experienced and passionate volunteers serve on each committee and work together to help make the DSA of DE a successful organization.  
• Advisory Council
The purpose of the Advisory Council is to keep key stakeholders engaged with the DSA of DE and to be available to advise the Board, Development Committee and the executive leadership with regard to fundraising initiatives, public relations and programming issues.  The Advisory Council does not have any authority to govern the DSA of DE; such authority resides with the full board.
• Executive Committee
This group includes the Board President, Vice-President, Treasurer and Secretary. They work closely with the Executive Director and sets direction in terms of agendas for the complete board.
• Education Committee


This committee works closely with the Executive Director and to plan a combination of monthly parent education meetings and social gatherings as well as a regional educational conference. The meetings are of a variety of topics which cover the life span of individuals with Down syndrome. The Education committee will also work closely with the educators within Delaware to ensure that students with Down syndrome have access to high quality educational programs in their schools and will support families in developing and maintain IEP goals which meet their child's needs.
• Finance Committee
The Finance Committee oversees the budget writing process and monitors our revenue, cash flow and expenses on an on-going basis.  The finance committee is responsible for management of the DSA of DE scholarship program.


• Government Affairs and Advocacy Committee
The purpose of this committee is to follow and publicize to individuals and families - relevant local, state and national legislative and regulatory developments.  They will also seek input from individuals and families as to ways in which governmental advocacy can support the mission of the DSA of DE.
• Health Advisory/ Outreach Committee
The primary role of this group is to sort through the latest health issues / trends that are impacting the Down syndrome community and then help sort out how we communicate these items to those connected to the DSA of DE.  We will also seek their help in making networking connections with other medical professionals, those responsible for implementation of House Bill 214, who come in contact with parents, who have a child with Down syndrome and expectant parents. Staff members will keep Outreach Committee members up-to-date on issues with the clinics located at Nemours and Christiana Care. This group will have a medical professional on the committee.
• Self Advocate Committee

The DSA of Delaware was founded by parents of children with Down syndrome and continues to be driven by parents, family members and others who have a passion for individuals with Down syndrome.  Together we share knowledge and experiences with other families, and help and support new parents.  We promote the need to continue to education ourselves, educational and medical professionals and the public about Down syndrome.  We embrace all of the things our children can do and their potential to be an integral part of our local communities.

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 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 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

  • 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 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, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

Down Syndrome Association of Delaware
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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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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 Delaware

Board of directors
as of 05/19/2023
SOURCE: Self-reported by organization
Board co-chair

Mr Dave Gazzillo

Bank of America

Term: 2017 - 2023


Board co-chair

Ms Shelvia Neely

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 ? Yes
  • 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 1/25/2023

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 (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

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

Equity strategies

Last updated: 10/19/2021

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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • 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 measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • 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.