Share |

Exceptional Lives Inc.

 77 Heath Street
 Brookline, MA 02445
[P] (617) 388-3638
[F] --
www.exceptionallives.org
[email protected]
Jay O'Brien
Facebook Twitter
INCORPORATED: 2013
 Printable Profile (Summary / Full)
EIN 46-2333038

LAST UPDATED: 06/08/2016
Organization DBA --
Former Names --
Organization received a competitive grant from the Boston Foundation in the past five years No

Summary

--

Mission StatementMORE »

Exceptional Lives provides free, online Guides that help parents navigate through difficult processes such as how to:

  • Create an effective IEP
  • Find out if a child qualifies for special education
  • Optimize their child’s health insurance
  • Obtain guardianship, or explore alternatives
  • Access social security (SSI) and other disability benefits

Mission Statement

Exceptional Lives provides free, online Guides that help parents navigate through difficult processes such as how to:

  • Create an effective IEP
  • Find out if a child qualifies for special education
  • Optimize their child’s health insurance
  • Obtain guardianship, or explore alternatives
  • Access social security (SSI) and other disability benefits

FinancialsMORE »

Fiscal Year July 01, 2015 to June 30, 2016
Projected Income $250,000.00
Projected Expense $247,778.00

ProgramsMORE »

  • Free, online Guides for parents of children with developmental disabilities

Revenue vs. Expense ($000s)

Expense Breakdown 2015 (%)

Expense Breakdown 2013 (%)

Expense Breakdown (%)

No data available

For more details regarding the organization's financial information, select the financial tab and review available comments.


Overview

Mission Statement

Exceptional Lives provides free, online Guides that help parents navigate through difficult processes such as how to:

  • Create an effective IEP
  • Find out if a child qualifies for special education
  • Optimize their child’s health insurance
  • Obtain guardianship, or explore alternatives
  • Access social security (SSI) and other disability benefits

Background Statement

Jay O'Brien and Anne Marcus met at Harvard in 2012 and recognized our shared dedication to helping families of children with disabilities gain better access to services and supports. We knew disability information was available, but that much of it was too general or inaccessible for the families who needed it. To solve this problem, we began collaborating to create technology solutions that could empower families with access to essential information, tailored to their individual situations. In 2013, we launched Exceptional Lives.

In July 2014 we launched our technology in partnership with sister company Navitome LLC, which produces the patent-pending software we use. Our prototype Safety Plan Guide began walking families through an individualized process to ensure they are prepared for a public or personal emergency involving their exceptional family member. We incorporated learnings from the prototype into the first wave of 4 free Guides being published in November 2015, in the areas of special education, health insurance, guardianship, and SSI (Social Security) and other disability benefits.

Since launch, more than 7,000 parents and professionals have used our Guides. We incorporated parent feedback into content and technology improvements that were launched on June 1, 2016.

Between Anne and Jay, this organization has a solid set of leadership and operational skills. After a long and successful career in fixed income investments at Fidelity, Anne co-founded the Autism Consortium in 2006. Anne has nonprofit management expertise, business acumen, and the experience of parenting a young adult with a disability. Executive director Jay O'Brien has experience in operations, research, development, and outreach developed through his roles with Special Olympics and the Autism Consortium. Together, they have built a network of 250 disability nonprofits, special education parent councils, and other stakeholder groups to support the work of Exceptional Lives.


Impact Statement

Our Guides help families create a better future for their children with disabilities. By putting Guides into the hands of the 12,000,000 US families who are raising children with disabilities, Exceptional Lives helps each family plan for their child’s needs.

Results from parents who have used a Guide show:

  • 80% feel less anxiety about what to do
  • 82% feel more empowered to get the information and services their family needs
  • 90% feel more prepared to navigate the respective process

Over the past 12 months, we have made great progress in building our organization and moving toward our goal of putting more Guides into the hands of families. Our accomplishments include:

  1. Curated and published our first 4 Guides.
  2. Built a statewide network of 250 partners, including disability nonprofits, state agencies, housing authorities, churches, cultural organizations, and parent support groups.
  3. Augmented a world-class technology development team with new team members including content researchers/curators, an illustrator/designer, a data scientist, and a special needs attorney.

Over the next 12 months, we will:

  1. Curate and publish at 5 new Guides, including What to do once you get a disability diagnosis, and How to transition from school to work.
  2. Identify and recruit 30 new subject matter experts (SMEs) as expert sources and reviewers of our Guide content.
  3. Serve more people by adding full mobile/smartphone accessibility, focusing outreach on low‐income families, and translating Guides into multiple languages.

Needs Statement

We seek support in a number of areas.

  1. Build capacity to produce more Guides and support parent-users. Additional content researchers/curators allow us to create and publish Guides more quickly, and on‐call navigator support specialists allow us to assist parents who need help via text, phone, and email as they use our Guides.
  2. Recruit more volunteer Subject Matter Experts (SMEs) to serve as content sources and expert reviewers.
  3. Execute a marketing/communications plan to make sure families who need our free Guides can get them.
  4. Add board-level leadership from underserved communities to focus our outreach in areas with high levels of inter-generational poverty, low access to resources, and other barriers to accessing information and services.
  5. Attract donated computers/laptops for parents to use during our workshops which are not held in a public library or school computer lab.

CEO Statement

--

Board Chair Statement

--

Geographic Area Served

STATEWIDE
GREATER BOSTON REGION, MA

Currently, we are focused on Massachusetts and specifically the Greater Boston area. After we develop our model, we plan to expand to other states.

Organization Categories

  1. Human Services - Developmentally Disabled Services/Centers
  2. Science & Technology -
  3. Civil Rights, Social Action, Advocacy -

Independent research has been conducted on this organization's theory of change or on the effectiveness of this organization's program(s)

No

Programs

Free, online Guides for parents of children with developmental disabilities

Exceptional Lives provides free, interactive Process Guides to help parents navigate the unfamiliar or overwhelming situations they face in providing care for their exceptional family members. Our Guides show parents how to:

  • Create an effective IEP
  • Find out if a child qualifies for special education 
  • Optimize their child’s health insurance 
  • Obtain guardianship or explore alternatives 
  • Access social security (SSI) and other disability benefits 

Each Guide walks caregivers step‐by‐step through a given process to achieve a related goal. Our Guides are unique because they are:

  • Accurate, credible, high‐quality, up‐to‐date, and curated by recognized experts 
  • Focused on specific, actionable steps
  • Easy to understand, interactive and engaging 
  • Individualized to a family’s unique circumstance 

Our Guides translate overwhelming amounts of information into actionable steps that parents can manage.

Budget  $128,348.00
Category  Human Services, General/Other Services for Individuals with Disabilities
Population Served People/Families with People of Developmental Disabilities
Program Short-Term Success 

We intend to build upon early success offering our Process Guides to families. Because Exceptional Lives Process Guides are offered online, they are well suited to monitoring and evaluation. During our beta testing period, among those who completed one or more elements of an Exceptional Lives Safety Plan Guide:

  • 90% feel more prepared to handle a crisis involving their exceptional family member
  • 82% feel more empowered to get the information and services their family needs to prepare for a crisis
  • 88% would use an Exceptional Lives Process Guide to walk through other care-related processes
Program Long-Term Success 

Our free, online Guides empower families with the timely, relevant, actionable information they need to give their child with disabilities the opportunity for an exceptional life.

To this end, we gather data with pre- and post-Guide surveys. We ask questions to assess whether parents feel:

  • More knowledgeable about how to complete a given process
  • More confident in their ability to complete the process
  • Likely to use a Process Guide on another topic.

To help us gather longitudinal data, we ask parents to opt into receiving a follow-up call from Exceptional Lives to assess the Guide's impact.

Program Success Monitored By 

We monitor and evaluate each Process Guide using numerous qualitative and quantitative measures. We assess our progress in the following ways:

  • Parent Workshops. We introduce each Process Guide through in-person parent workshops in Greater Boston and across Massachusetts, and then collect quantitative and qualitative feedback to fuel our continuous improvement methodology.
  • Process Analytics. As people move through a Guide, our data analytics package collects data on how many people start/stop/complete the process, how quickly they move through, and where the bottlenecks are. We use this data to analyze process performance and minimize process complexity.
  • Process Feedback. Our in-tool feedback mechanism enables users to ask for help or provide feedback so we can understand how to improve and optimize each Guide. This not only helps Exceptional Lives support individual users, but allows us to assess the usability and usefulness of our Guides. 
Examples of Program Success 
In addition to the above quantitative data, we have received strong qualitative examples of the impact of our Guides, including these parent statements:
"The Process Guide gives you the peace of mind that you’re thinking of, covering and managing all these things."
"This tool guides parents through different dynamics and situations, and makes you think of what else you should be thinking of."
 
"I'm always trying to be online, read books, but it's overwhelming. There's a lot of great info out there, but I'm not sure I'm finding it. I like how this guides me, prompts me, gives me the paperwork I need."
 
“The clarity of the information and the ease of navigating the Exceptional Lives Process Guide to get to critical information that is relevant to my son's situation, was striking. Over the past ten years, I have spent hundreds of hours consulting professionals, networking with other parents, reading books, in online forums, and on government and non-profit organization websites, searching for resources for my son and for information that would empower us to make the best decisions possible for him. Even though he is 18 years old now, there are still decisions to be made that will have a profound effect on his quality of life. I now feel confident that we will be able to easily reach the information we need without having to spend ten more years sorting through information that is important for other families but not for us.“

CEO/Executive Director/Board Comments

--

Management


CEO/Executive Director Mr. Jay W. O'Brien
CEO Term Start Jan 2013
CEO Email [email protected]
CEO Experience www.linkedin.com/in/jayob
Co-CEO --
Co-CEO Term Start --
Co-CEO Email --
Co-CEO Experience --

Former CEOs and Terms

Name Start End
-- -- --

Senior Staff

Name Title Experience/Biography
-- -- --

Awards

Award Awarding Organization Year
-- -- --

Affiliations

Affiliation Year
-- --
Member of state association of nonprofits? No
Name of state association --

External Assessments and Accreditations

External Assessment or Accreditation Year
-- --

Collaborations

--

CEO/Executive Director/Board Comments

--

Foundation Comments

--

Staff Information

Number of Full Time Staff 3
Number of Part Time Staff 3
Number of Volunteers 20
Number of Contract Staff 6
Staff Retention Rate % 100%

Staff Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 3
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 0
Other (if specified): --
Gender Female: 2
Male: 1
Not Specified 0

Plans & Policies

Organization has Fundraising Plan? Under Development
Organization has Strategic Plan? Under Development
Years Strategic Plan Considers 3
Management Succession Plan No
Business Continuity of Operations Plan No
Organization Policies And Procedures No
Nondiscrimination Policy Under Development
Whistle Blower Policy No
Document Destruction Policy No
Directors and Officers Insurance Policy --
State Charitable Solicitations Permit Yes
State Registration Yes

Risk Management Provisions

--

Reporting and Evaluations

Management Reports to Board? Yes
CEO Formal Evaluation and Frequency No N/A
Senior Management Formal Evaluation and Frequency No N/A
Non Management Formal Evaluation and Frequency No N/A

Governance


Board Chair Ms. Anne Punzak Marcus
Board Chair Company Affiliation Fidelity
Board Chair Term Oct 2014 -
Board Co-Chair --
Board Co-Chair Company Affiliation --
Board Co-Chair Term -

Board Members

Name Company Affiliations Status
Mr. Charles Johnson Choate, Hall & Stewart Voting
Ms. Christine Letts Harvard Kennedy School Voting
Mr. Jay W. O'Brien Exceptional Lives Voting
Ms. Carol Raphael AARP Voting

Constituent Board Members

Name Company Affiliations Status
-- -- --

Youth Board Members

Name Company Affiliations Status
-- -- --

Advisory Board Members

Name Company Affiliations Status
-- -- --

Board Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 5
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 0
Other (if specified): --
Gender Female: 3
Male: 2
Not Specified 0

Board Information

Board Term Lengths --
Board Term Limits --
Board Meeting Attendance % 100%
Written Board Selection Criteria No
Written Conflict Of Interest Policy Under Development
Percentage of Monetary Contributions 80%
Percentage of In-Kind Contributions 100%
Constituency Includes Client Representation Yes

Standing Committees

    --

CEO/Executive Director/Board Comments

--

Foundation Comments

--

Financials


Revenue vs. Expense ($000s)

Expense Breakdown 2015 (%)

Expense Breakdown 2013 (%)

Expense Breakdown (%)

No data available

Fiscal Year July 01, 2015 to June 30, 2016
Projected Income $250,000.00
Projected Expense $247,778.00
Form 990s

2015 Form 990EZ

2014 Form 990EZ (covers 6 mos., Jan. 1, 2014 - June 30, 2014, change in fiscal year)

2013 Form 990EZ (covers ~11 mos., Feb. 15, 2013 - Dec. 31, 2013)

Audit Documents --
IRS Letter of Exemption

IRS Letter of Determination

Prior Three Years Total Revenue and Expense Totals

Fiscal Year 2015 2013 --
Total Revenue $159,000 $90,120 --
Total Expenses $125,586 $41,579 --

Prior Three Years Revenue Sources

Fiscal Year 2015 2013 --
Foundation and
Corporation Contributions
-- -- --
Government Contributions $0 $0 --
    Federal -- -- --
    State -- -- --
    Local -- -- --
    Unspecified -- -- --
Individual Contributions $159,000 $90,120 --
Indirect Public Support -- -- --
Earned Revenue -- -- --
Investment Income, Net of Losses -- -- --
Membership Dues -- -- --
Special Events -- -- --
Revenue In-Kind -- -- --
Other -- -- --

Prior Three Years Expense Allocations

Fiscal Year 2015 2013 --
Program Expense $114,272 $41,579 --
Administration Expense $11,314 -- --
Fundraising Expense -- -- --
Payments to Affiliates -- -- --
Total Revenue/Total Expenses 1.27 2.17 --
Program Expense/Total Expenses 91% 100% --
Fundraising Expense/Contributed Revenue 0% 0% --

Prior Three Years Assets and Liabilities

Fiscal Year 2015 2013 --
Total Assets $36,457 $52,041 --
Current Assets $35,707 $50,841 --
Long-Term Liabilities $0 $0 --
Current Liabilities $0 $3,500 --
Total Net Assets $36,457 $48,541 --

Prior Three Years Top Three Funding Sources

Fiscal Year 2015 2013 --
1st (Source and Amount) -- --
-- --
-- --
2nd (Source and Amount) -- --
-- --
-- --
3rd (Source and Amount) -- --
-- --
-- --

Financial Planning

Endowment Value --
Spending Policy --
Percentage(If selected) --
Credit Line Yes
Reserve Fund No
How many months does reserve cover? --

Capital Campaign

Are you currently in a Capital Campaign? No
Capital Campaign Purpose --
Campaign Goal --
Capital Campaign Dates -
Capital Campaign Raised-to-Date Amount --
Capital Campaign Anticipated in Next 5 Years? No

Short Term Solvency

Fiscal Year 2015 2013 --
Current Ratio: Current Assets/Current Liabilities -- 14.53 --

Long Term Solvency

Fiscal Year 2015 2013 --
Long-term Liabilities/Total Assets 0% 0% --

CEO/Executive Director/Board Comments

--

Foundation Comments

This organization is newer and began its work in 2013, subsequently receiving its nonprofit status from the IRS in August 2014 (as noted in the IRS Letter of Determination posted above). Financial summary data in charts and graphs above are per the organization's IRS Form 990s. Contributions from foundations and corporations are listed under individuals when the breakout was not available.
 
Please note, data in the charts and graphs for FY13 covers approximately 11 months (Feb. 15, 2013 - Dec. 31, 2013) and is per the 990. The FY14 990 file posted above covers a 6 month period (Jan. 1, 2014 - June 30, 2014), reflecting a change in fiscal year, from calendar to a July 1 - June 30 fiscal year. As such, this 6 month FY14 data is not included in the charts and graphs above.
 

Documents


Other Documents

No Other Documents currently available.

Impact

The Impact tab is a section on the Giving Common added in October 2013; as such the majority of nonprofits have not yet had the chance to complete this voluntary section. The purpose of the Impact section is to ask five deceptively simple questions that require reflection and promote communication about what really matters – results. The goal is to encourage strategic thinking about how a nonprofit will achieve its goals. The following Impact questions are being completed by nonprofits slowly, thoughtfully and at the right time for their respective organizations to ensure the most accurate information possible.


1. What is your organization aiming to accomplish?

Families of children with disabilities struggle to find the timely, relevant, and actionable information they need, because publicly available information is overwhelming, unreliable, and generic. Our Guides address this issue by walking parents through questions that lead them down an individualized path of actionable steps. Our software's embedded branching logic allows us to map out underlying decision trees, which enable this customized guidance. And if parents have questions as they work through a Guide, they can ask us for help via text, phone or email.

Exceptional Lives has set ambitious goals for the next three years:

  • Become one of the top three providers of disability information in MA.
  • Produce at least 10 new free Guides.
  • Secure the commitment of at least 30 Subject Matter Experts to help us curate Guides.
  • Make our Process Guides more accessible by designing a mobile app and enhancing our human support.
  • Work to engage families in underserved neighborhoods.

We define success as knowing that the families of exceptional children are able to clarify, articulate and act to achieve their individual goals. We will know that we have been successful when the families of children with disabilities lead lives that are safer, happier, and more fulfilling because of our Guides.


2. What are your strategies for making this happen?

We will publish Process Guides that help exceptional families define and accomplish their goals. We have already seen that these Guides make a difference for the families of exceptional children; our goal now is to get more Guides into the hands of more families.

Moving forward, we have planned these activities to work toward our long-term goals:

  • Publish a minimum of 10 additional Guides in the next three years.
  • Engage more families by conducting at least 30 Parent Workshops each year, together with parent groups and nonprofit partners.
  • Identify, recruit, and cultivate Subject Matter Experts (SMEs) to help us source, synthesize, and organize the actionable information we present to parents in our Process Guides.
  • Translate our Guides into Spanish, Portuguese, Chinese, Vietnamese, and Haitian-Creole.
  • Launch social media campaigns featuring guest bloggers to drive traffic to our Guides.
  • Enhance search engine optimization (SEO) by engaging an inbound marketing expert to maximize our visibility to Internet searchers.
  • Optimize the user experience with our Guides, including via mobile accessibility.
  • Add Board members to augment the expertise and reach of our leadership team, particularly with underserved neighborhoods in Boston and other Massachusetts cities.
  • Diversify our funding sources by securing new foundation, corporate, and individual donors.

3. What are your organization’s capabilities for doing this?

Exceptional Lives is strongly positioned to make a difference in the lives of the families of exceptional children. Our internal strengths include the experience and passion of our team members: our Board, staff, partner organizations, and Subject Matter Experts.

Our Board is comprised of smart, dedicated people with years of experience in disability services and nonprofit management.

  • Anne Punzak Marcus, our co-founder and Board Chair, has more than ten years of experience working with organizations focused on brain disorders, education and health. She is a co-founder of the Autism Consortium, a Boston-based organization which brings together clinicians, researchers and families to expedite autism research.
  • Charles Johnson is a Partner at Choate, Hall & Stewart, has an adult son with Down syndrome, and serves on the Board of Special Olympics Massachusetts.
  • Christine Letts is Senior Lecturer in the Practice of Philanthropy and Nonprofit Leadership at Harvard Kennedy School, and has extensive experience in nonprofit management.
  • Carol Raphael is national Board Chair of the AARP, and former President and CEO of the Visiting Nurse Service of New York, the largest nonprofit home health agency in the US.

Jay O'Brien, our co-founder and Executive Director, has worked in the disability field for 12 years, following positions in the US Senate in Washington and in high-tech marketing/communications in Boston. His experience includes nine years as a field office director and corporate fundraiser for Special Olympics Massachusetts.

Our most important external strengths involve our partners. In June 2013 Exceptional Lives developed an innovative for-profit/nonprofit partnership with our sister company, Navitome LLC. Navitome is a for-profit technology company that will provide the free, web-based software that is at the core of our service to exceptional individuals and families.

Additionally, as part of our outreach strategy we have engaged with more than 100 individual Special Education Parent Advisory Councils in Massachusetts. We are also working with partner organizations such as Special Olympics, Best Buddies, Partners for Youth with Disabilities, Federation for Children with Special Needs, and the Arc of Massachusetts.

Finally, our Subject Matter Experts (SMEs) provide the expertise we rely on in order to parse and curate the enormous amount of information that is potentially relevant to the families we serve.


4. How will your organization know if you are making progress?

We have established clear goals which will enable us to monitor our progress very closely. In the next three years we will:

  • Complete at least 10 new Process Guides (at least three per year)
  • Secure the commitment of at least 30 Subject Matter Experts
  • Conduct at least 90 parent/caregiver workshops
  • Surpass 5,000 parent/caregiver users [achieved April 2016 - within 6 months]
  • Create a formal Partner Program to enhance our relationships with partner organizations
  • Create mobile accessibility for our Process Guides [achieved]
  • Augment our Guides with two types of human support (support specialists [achieved] and a local parent-to-parent mentoring program)
  • Increase our staff to five people

We are also taking a very thoughtful approach to measuring the success of each Guide. Because Exceptional Lives Process Guides are offered online, they are well suited to monitoring and evaluation. We will capture data related to the number of people who start a given Guide, rates of completion, and user difficulties at various points in the process. More specifically, we will evaluate our progress in the following ways:

  • Parent Workshops. We introduce each Process Guide through in-person parent workshops in Greater Boston and across Massachusetts, and then collect quantitative and qualitative feedback to fuel our continuous improvement methodology.
  • Process Analytics. As people move through a Guide, our data analytics package collects data on how many people start/stop/complete the process, how quickly they move through, and where the bottlenecks are. We use this data to analyze process performance and minimize process complexity. 
  • Process Feedback. Our in-tool feedback mechanism enables users to ask for help or provide feedback so we can understand how to improve and optimize each Guide. This not only helps Exceptional Lives support individual users, but allows us to assess the usability and usefulness of our Guides.

5. What have and haven’t you accomplished so far?

--