Disability Lead

Power. Influence. Change.

Chicago, IL   |  https://www.disabilitylead.org

Mission

To increase civic engagement and diverse leadership in the Chicago region by developing and building a network of leaders with disabilities — consistent with the spirit of the Americans with Disabilities Act.

Ruling year info

2019

Executive Director

Emily Blum

Main address

567 W Lake Street Suite 1150

Chicago, IL 60661 USA

Show more contact info

Formerly known as

ADA 25 Advancing Leadership

EIN

84-1895211

NTEE code info

Disabled Persons' Rights (R23)

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

Disability is a natural part of the human experience. Disability exists in every facet of society including in immigrant communities, in Black and Brown communities, in LGBTQIA+ communities, in Indigenous Communities and every community in between. While the Americans with Disabilities Act affirmed the rights of people with disabilities, we work with the understanding that we will only be an equitable and inclusive society when we achieve true disability justice. Disability justice is a cross-disability and cross-social justice movement that centers intersectional identities led by those who have been most impacted by systemic oppression. It insists that our worth is inherent and tied to the liberation of all people. We pursue our vision with a voracious belief that creating a more equitable and inclusive society matters and is an obligation of everyone who leads.

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?

Institute

Brings together 16-20 emerging leaders with disabilities from the Chicago region for a Fellowship Year. The year-long program offers an immersive learning experience that prepares participants to collaborate and lead with power and influence. Past Fellows have called the program "transformative," "of the highest value," and "empowering." It is the only leadership development program exclusively for individuals with disabilities--as one Fellow put it, "The Institute is like a master class in pride."

Population(s) Served
People with disabilities

Creates a community of support around leaders with disabilities advancing in their leadership goals. Members are past Fellows as well as other emerging and established leaders with disabilities in the Chicago region. One Member said, "People with disabilities need a network of other people being brave with us. As Members, we can share our experiences and find solutions that we might not have looked for otherwise, because we feel safe and part of a community."

Population(s) Served
People with disabilities

Connects individuals with disabilities to opportunities for civic, community, and professional leadership. Connections are made through individual outreach as well as formal programs such as BoardLead, a structured partnership with Cause Strategy Partners that matches board members with selected nonprofits and also provides training on board service, and the Public Service Leadership Project, which connects and supports leaders with disabilities in pursuing opportunities for public service. In the past two years, 22 individuals have been appointed to nonprofit boards through BoardLead. In the past two years, 30 individuals have applied to City and State leadership positions, and three were appointed to key State leadership positions: Chair of the Illinois Human Rights Commission, Director of the Department of Rehabilitation Services, and Member of the University of Illinois Board of Trustees.

Population(s) Served
People with disabilities

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 clients placed

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

People with disabilities

Related Program

Connections

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Total number of civic advancements to nonprofit boards, public sector task forces and other opportunities.

Total number of organization members

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

People with disabilities

Related Program

Network

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of overall donors

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

Output - describing our activities and reach

Direction of Success

Increasing

Number of organizational partners

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

Input - describing resources we use

Direction of Success

Increasing

Context Notes

100 are disability rights organizations.

Number of new donors

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

Output - describing our activities and reach

Direction of Success

Increasing

Total number of new organization members

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

People with disabilities

Related Program

Institute

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

Totals reflect Fellows in each class.

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.

1. Provide broad education on disability justice.

2. Fight ableism and racism through intersectional disability leadership.

3. Build the bench of people with disabilities in positions of power and influence throughout the Chicago region.

Objective A: By 2023, add 175 new civic advancements for leaders with disabilities, bringing the total civic advancements made since inception to nearly 400.

Objective B: Strengthen and expand the Network to increase leadership opportunities for Members and to reflect the diversity of Chicago.
- By 2023, add 100 new Members to the Network, bringing the total Membership to over 200.
- By 2023, at least 51% of the Network will be BIPOC.

Objective C: Develop and implement a sustainable business model with increased partnerships and a robust internal culture of philanthropy to scale Disability Lead for growth.
- By 2023, double the number of individuals and corporations who give annually to Disability Lead, bringing totals to 8 corporations and 50 individuals.
- By 2023, build 100 new, mutually beneficial partnerships with corporate, public, and nonprofit organizations, bringing the total partners to over 175.

4. Support equitable policies that fulfill the promise of the ADA.

1. We are infusing Disability Lead’s programs this year with a focus on the intersection of disability justice and racial equity.

2. We are partnering with local racial justice practitioners Enrich Chicago and Chicago Regional Organizing for Anti-Racism (CROAR) to infuse racial equity into our core work, policies, and practices. CROAR’s co-director is a 2020 Fellow and Network Member.

3. Objective A: We will continue to increase the number of advancements made by our Members. We also plan to develop a new concept: “Connections Ambassadors”—a group of deeply connected individuals who will use their networks and knowledge to identify service opportunities for our Members and facilitate connections as appropriate. The Ambassadors program has the potential to help systematize our civic connections work for greater scale and efficiency.

Objective B:
- Each year, Disability Lead adds 16-20 new Fellows to its Network, yet expansion must be accelerated if we want to achieve desired scale. This will require revamping our recruitment efforts and refining and re-packaging the program elements (e.g., membership criteria, benefits, specific program offerings, etc.). Funding will enable Disability Lead to conduct research, hold focus groups with current Members to brainstorm ideas for attracting and retaining Members, and test new recruitment strategies and program offerings.
- Our strategy for this work centers on cultivating meaningful partnerships with highly engaged and deeply connected grassroots groups such as the Marshall Square Resource Network. We have added over 25 new partners through this strategy, and the ultimate result has been a significant increase in the diversity of our Fellowship application pool: between 2018 and 2019, the number of BIPOC applicants rose by 140%.

Objective C:
- Now that Disability Lead is an independent nonprofit, the next step is to identify a fundraising model for long-term growth and sustainability. Our plans include 1) laying out a strategy for increasing support from individual and corporate funders and 2) continuing to build the necessary infrastructure to support it. Possible tactics include getting Disability Lead registered with corporate supporters’ employer matching programs; encouraging increased Member giving; fully leveraging the capabilities of our new relationship management system, Neon; and implementing the new Give/Get minimum that our board will vote on.
- To ensure long-term sustainability, we will significantly increase our institutional partnerships.

4. We cultivated relationships with key policymakers and are continuing to advocate for this critical change.

Structurally, Disability Lead is led by a four-member staff team that works with the membership to brainstorm, design, and execute all programs. A 10-member board of directors is responsible for providing fiduciary oversight and ensuring the long-term sustainability of the organization. Every staff member of Disability Lead identifies as having a disability, as do one-half of Board leadership, and eight board and staff members are Members. The Network is always looked to as a source of new talent for Disability Lead’s staff and board. Members are notified and invited to apply when an AL staff position becomes available. In the most recent staffing search for Disability Lead’s Executive Director in 2019, the chosen individual came from within the Network.

In fall 2019, Emily Blum was hired as Disability Lead’s first full-time Executive Director. For Emily, a Member and 2018 Fellow, this role is both personal and professional. A seasoned nonprofit leader, she has more than 20 years’ experience bringing stakeholders together to create and implement effective communications strategies around complex social and political issues. Emily previously held senior positions at some of Chicago’s leading nonprofits, including Metropolitan Planning Council (MPC), Chicago Humanities Festival (CHF) and Heartland Alliance.

Other core Disability Lead team members—Robin Burnett, Director of Education and Operations; Risa Rifkind, Director of Civic Engagement and Marketing; and Alex Perez Garcia, Associate Director of Development and Communications—have been with the organization since Disability Lead's inception. All four staff members identify as individuals with disabilities and half are women of color. Risa and Alex are also graduates of the Institute. Disability Lead’s commitment to maintaining a diverse staff and board that are well-versed in disability knowledge and experience is consistent with the resounding motto of the disability rights movement, “Nothing about us without us.”

In addition to board and staff leadership, Members are invited to serve on Disability Lead’s Program Committee, which focuses on interviewing and selecting the next Institute Fellows class. Members have also been invited to serve on various ad-hoc committees that advance Disability Lead’s internal work. Members actively help recruit new Members and Fellows—often through speaking engagements and sharing their stories on Disability Lead’s communications channels—and they also design and lead sessions at our events. As presentations and conversations are led more and more by our Members, it illustrates progress made toward our goal of building a strong disability leadership pipeline, as well as our principle of inclusion and representation on both sides of the session. Examples of past Member-led sessions include: Disability Rights History, Personal Storytelling, and Intersectionality and Disability.

1. In response to the COVID pandemic, we launched a virtual Disability Power Series to nurture community and amplify disability stories and policy priorities. These events have attracted our Members and beyond and will become part of our ongoing programming. We are also focusing our annual symposium on action-oriented conversations around racial equity and disability justice. It will be hosted online to provide greater access to a broader audience and to bring in national speakers. The goal is to share the power and responsibility of advancing racial and disability justice by growing awareness of issues and making the work more accessible.

2. Our fall symposium will feature local and national disability and racial justice leaders and explore how policy can be shaped to advance the rights and voices of BIPOC and people with disabilities.

3. Objective A: The number of civic advancements increased from 146 to 200. 100% of Members are currently serving in a civic role, and 75% have joined a new board or task force or advanced in their career since becoming a Member.

Objective B:
- Network grew from 115 Members to 142.
- As of 2019, 36% identify as BIPOC (Biracial, Indigenous and People of Color).

Objective C:
- Currently identifying a fundraising model for long-term growth and sustainability.
- In 2019, 50 new donors engaged last year bringing total to 78 total individual donors. The number of partnerships increased from 50 to 75. Current total individual donors are at 155.

4. Disability Lead was part of the coalition that won support for new Illinois guidance regarding non-discrimination in emergency healthcare—a victory that will ensure more equitable treatment for people with disabilities, seniors, and racial and ethnic minorities. We also joined the effort to oppose immunity for nursing homes, which puts residents with disabilities and seniors at greater risk for substandard care or neglect.

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 collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person),

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

    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,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

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

  • 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

Disability Lead
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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.

Disability Lead

Board of directors
as of 6/16/2021
SOURCE: Self-reported by organization
Board co-chair

Mary Anderson (President)

AARP


Board co-chair

Kenton Klaus (Vice President)

Deloitte/DePaul University

Chad Turner

JPMorgan Chase

Adam Burke

Microsoft

Anna Lee

The Chicago Community Trust

Lora Laverty

CDW Corporation

Ann Manikas

American Medical Association

Karen Tamley

Access Living

John Tuhey

The Tuhey Law Firm LLC

Andres Gallegos

Robbins, Salomon & Patt, Ltd.

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 09/15/2020

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 with 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: 09/16/2020

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.