The Silver Lining

By:  Johnette Hartnett

Introduction

Twenty seven years ago I buried my three children on a cold March day in Vermont. Along with their housekeeper they died of smoke inhalation from an early morning fire. At age 33 my life as a mother and wife ended. I spent five years in therapy talking mostly about issues not related to the fire but about my own insecurities. How would I go on? What would I do? How would I take care of myself? The less talked about were the existential questions of “why?”  Why did my children die? Why not me instead?

Slowly I carved out a new life that included graduate school, writing books on grief and time with my dear parents in their last years. My Father who had Cerebral Palsy and taught college for 50 years was my mentor through graduate school. He read every book I read and deserved the degree as much as I did. My Mother, a homemaker, had polio as a teenager and became a registered nurse in her early career. She told me stories about my children that I always loved hearing. Through these years, with lots of Grace from God, my life began to heal. 

I made a deliberate decision as I entered graduate school to focus my academic studies on disability policy and educational leadership and not bereavement studies. My dissertation argued for entitlement for adults with developmental disabilities in Vermont.  Vermont’s Constitution’s 1777 Mental Defective Clause states that the “care of Persons and Estate of those who were “non compos mentis” (not of sound mind) and without family were to be cared for by the local selectmen or Legislature.”  I argued that for 156 years that obligation was not met.  While at the University of Vermont College of Education I applied for the Joseph P. Kennedy Fellowship to work in the Congress on behalf of welfare and disability. I was awarded the fellowship and worked in the office of Senator Rockefeller and never looked back. Upon completing the year long fellowship I joined the National Disability Institute (NDI) that at that time was a program under the National Cooperative Bank Development Corporation in Washington, DC.

Brown Bag Luncheon Series

Soon after arriving at NDI we hosted a national meeting for several states to come to DC and share how welfare reform in their state was impacting disability and what programs and practices were being developed and adopted. Although states were allowed to exempt up to 20% of their welfare population with disability from the five year rule (maximum lifetime benefit) many reported difficult caseloads with co-occurring diagnosis. A few years after this meeting the General Accountability Office (GAO) issued a report¹ that found 40% of remaining welfare caseloads were reporting disability.

Welfare reform ushered in a focus on asset building as an anti-poverty strategy to help low-income people move toward greater self-sufficiency by accumulating savings and purchasing long-term assets. The Assets for Independence Act² (AFI Act) in 1998 introduced the Individual Development Account program that allowed eligible individuals to save to purchase a first home, capitalize a small business or participate in post secondary education or training.   It was like its own stimulus bill to help low income workers save with the incentive of a dollar or more match and a requirement to participate in financial education training.  By 2004, the American Dream Demonstration, released its report³ on IDAs. Its major finding was that low-income individuals can and do save. It was about that time that the disability community began investigating how workers with disabilities could participate.

In 2004 the National Disability Institute hosted a dialogue of national leaders from a number of community development organizations, universities and federal partners to discuss the potential  of this new field called asset development and what it could mean for people with disabilities. At a monthly national brown bag luncheon series entitled With Equity and Assets for All (WEAFA) DC leaders gathered in the basement of the National Cooperative Bank as people from around the country called-in to conceptualize  asset development strategies. Topics included housing, financial education, favorable tax credits, matched savings programs, microenterprise and lending, Social Security Work Incentives, assistive technology, special needs and pooled trusts, community development credit unions, Community Development Financial Institutions, understanding the unbanked, employment and how to make tax and financial information, services and products accessible.  Each month experts in the field discussed how their program(s) and service(s) could benefit people with disabilities.

The key purpose of asset development for low-income workers was poverty reduction and economic empowerment. Even though there was strong evidence that linked poverty and disability, advocacy organizations and public policy makers who focused on economic independence tended to bypass issues of disability in their reports and policy agenda. It was clear that the data being used to look at the issues of the banked and unbanked did not include the variable disability. Consequently, NDI produced research with its national partners that identified the division in public policy that segregated people with disabilities from the mainstream. As a result, we started to understand that people with disabilities receive supports and services mostly from disability-specific programs and organizations which do not include financial education and asset development. The lack of strong disability market data coupled with high unemployment rates distanced the disability community even further from benefiting from the various financial innovations being introduced at the community level. 

It was NDI’s vision that WEAFA would bring together the asset development and disability communities through informal working groups that would raise expectations for persons with disabilities regarding their economic empowerment.  One of the first questions raised by WEAFA participants was about asset limits. What would happen to a person who was working and receiving a means tested benefit (like Supplemental Security Income or Medicaid) if they were to receive the Earned Income Tax Credit or participate in a matched savings program like the Individual Development Account?  How would it impact their financial safety net, if real income gains were not yet realized? Others were interested in how asset reform could help people with disabilities working at good paying jobs (not on public benefits) defray the high entry and maintenance costs associated with out of pocket expenses necessary to work.

Over time, many of the participants began to question how accessible local community economic development resources and private sector financial services actually were for people with disabilities. It was at one of these meetings that the FDIC committed to creating the first ever Braille version of their national Money Smart Program that was field tested and released a year later.

It became obvious after a year of luncheon meetings that the research was silent on many of the issues raised. No one knew if the new Video Relay Service (VRS) for the Deaf interfaced with online financial services. Many questioned whether Volunteer Income Tax Assistance sites, or Individual Development Account programs directly outreached to the disability customer.  Even less was known about how financial institutions were reaching customers with disabilities or if investments in the underserved market of individuals with disabilities qualified for Community Reinvestment Act credit. What became clear was that no one had asked people with disabilities about their tax and financial service needs.  No one understood how people with disabilities saved or managed their finances or how they navigated online banking if challenged with access issues. No one really understood the role asset and tax reform could play in building a better economic future for people with disabilities.

It was during the luncheon series that NDI was introduced to the IRS Stakeholder Partnerships, Education and Communication division that was promoting free tax preparation through its Volunteer Income Tax Assistance (VITA) sites. Their national partnership model focused on Native Americans, English as a Second Language, the Elderly and Disability. IRS was interested in developing strategic outreach to taxpayers with disabilities and had produced a publication on disability tax provisions. NDI began a conversation with IRS in 2004 and together in 2005 began visits to 11 cities in what was called the TaxFACTS Campaign (later to become the Real Economic Impact Tour (REI Tour)). See “Educating Democracy.”⁴

The luncheons set the stage for a small group of participants to design and implement inaugural research on asset accumulation and tax policy for people with disabilities that was funded by the National Institute on Disability Rehabilitation Research (NIDRR) U.S. Department of Education. NDI along with the Federation of Community Development Credit Unions, the World Institute on Disability, the School of Community Economic Development, Southern New Hampshire University, and the Law, Health Policy and Disability Center, at the University of Iowa, College of Law led the first generation grant from 2004-2009. The NIDRR grant now in its second generation of research is housed at the Burton Blatt Institute, Syracuse University. Included in this second generation of research is the University of New Hampshire. This grant has laid the foundation for a new field of research, program development and public policy to build a roadmap out of poverty for people with disabilities. For an in depth look at the first generation of this research see “Building a Better Economic Future – A Progress Report for Individuals with Disabilities & Their Families in America.”⁵ 

A Call To Action

What began in the basement of a DC bank has grown into a national movement and call to action because of the commitment and leadership of thousands of people across the United States dedicated to building a better economic future for Americans with disabilities. For me the single most important outcome of the WEAFA luncheons was the idea that disability needed to make friends with non-disability and non-traditional partners who were the gatekeepers of the asset building and tax service world.

Each WEAFA partner took this “call to action” to heart and developed their own responses. WID’s Equity e-newsletter is an excellent example of how an organization responded to the call. Equity has a subscribership of over 35,000 people and there are five years of archived Equity Newsletters that document the growth and activities happening nationwide. The Federation of Community Develop Credit Unions integrated disability specific training into their financial education series Each One Teach Many⁶ and over the past five years trained thousands of people with disabilities on how to better manage their finances. In 2010 the Federation is developing and testing criteria that will reward credit unions for the type and number of services they provide customers with disabilities.   The University of New Hampshire⁷ is leading rigorous research in two states following taxpayers with disabilities with significant disabilities to understand their savings behavior overtime given a menu of treatments. 

Other members of WEAFA have created the first ever tax advantaged savings bill for individuals with disabilities the Achieving a Better Life Experience⁸ (ABLE Act).  It is the only proposed legislation focused on promoting savings and asset development opportunities specifically for people with disabilities. The ABLE Act would provide individuals and their families control over savings accounts that could accrue assets without jeopardizing their eligibility for Medicaid, SSI, and other public assistance.

The WEAFA workgroups became the model for the REI Tour free tax preparation outreach with IRS. Funding for this work has come primarily from the private sector with the National Cooperative Bank, Ford Foundation, Bank of America, AT&T, Walmart, Acorda Therapeutics, Inc, and 54Freedom the major sponsors to date. What began in 11 cities in 2005 will be in 100 cities in 2010 with over 332,903 free tax returns prepared representing $312.3 million in refunds since 2005. See The Real Economic Impact Tour Annual Progress Report 2008-2009.⁹  The REI Tour model addressed the problem of community integration by mixing up the service delivery model so taxpayers with disabilities would have to go to non-disability community-based organizations to receive services. The REI Tour awards small mini-grants to existing free tax and asset building coalitions to build capacity to serve more taxpayers with disabilities. For 2010 NDI awarded $250,000 in mini-grants to 81 organizations in 50 states. To learn more about the Tour and how your city can become involved visit www.reitour.org.

IRS SPEC is the lead federal agency of the Tour and has grandfathered this work through strategic guidance and introduction to the community-based VITA coalitions. Since WEAFA IRS has assisted with research in understanding the tax needs of individuals with disabilities. See “Educating Democracy”¹⁰ and “Characteristics of Disabled Taxpayers Ages 18 to 59.”¹¹  Together IRS and NDI with DeafTax.com piloted the REI Tour DeafTax initiative in 2009 that provided free tax preparation assistance to Deaf taxpayers in real time remotely in six cities using Video Relay Service (VRS) technology. Year two of the pilot¹² is beginning with 19 participating cities.

Another focus raised by the WEAFA series was the need for customized financial education curriculum for the diverse disability audience. In 2009, Bank of America funded the Building Economic Strength Together¹³ (BEST) Pilot Project in Jacksonville, FL designed to create a learning environment where individuals learned from one another about financial education and asset building opportunities.  The BEST Pilot Project utilized the Everyday Democracy Model that creates study circles that promote interactive and participatory learning.  NDI team members served as the facilitators.  The project was designed so local content experts (housing, tax preparation, credit counseling for example) presented. For example, individuals received information directly from the Internal Revenue Service on the Volunteer Income Tax Assistance Sites and Earned Income Tax Credit so when tax time came around they would know where to go and who to call for finding a location and if necessary accommodations. The mission of the Building Economic Strength Together (BEST) Pilot Project was to link the seven-county Jacksonville network of service providers, veterans with disabilities and students with intellectual disabilities to existing financial and tax services, business start-up, financial planning, credit/debt counseling programs and employment networks. 

The Next Decade

In these tough economic times it has been truly remarkable to see the growth in the field of asset development for people with disabilities. We know that economic empowerment isn’t about charity or disability but about the foundation needed for our democracy to survive. I have provided you here with a brief history and short list of activities generated over the past decade. The projects that are mentioned are just a footnote of what is to come. With the advances in technology and growth of disability with the aging baby boomers and the expansion of global connections we can expect dramatic shifts in how people with disabilities interact and access tax and financial services in the future.

The Chronicle of Philanthropy¹⁴ (January 14, 2010) reports that the “future starts now” and that non profits need to be looking ahead to the trends that will reshape philanthropy and fund raising by 2020. Five trends that we should be watching for in terms of our fundraising work are; a grayer America, technology advances, growing influence of Hispanic Americans, global philanthropy and charitable business. Notice of the five trends there was no mention of disability although it cuts across each.    

The work we have all done has created two extraordinary outcomes that will help us frame our work of the future. We have created a viable business case for disability as a market segment and linked disability to poverty.  Companies will want to provide accessible services and products from a business perspective and individuals with disabilities will be given more options and more choice as a result. As we move into the global community our business case for disability and our unique partnership model of working with corporations will be replicated as countries look for alternative financing.

As we move into 2010 NDI will be developing a curriculum that explores emotional wellness as a key component of financial wellness based on its preliminary work with veterans with disabilities. This work will address the needs of returning soldiers who are struggling to reenter life and cope with the losses they have witnessed and experienced.

I stood in front of a group of wounded warriors this past year and told them my story. Although we were there to provide them with an asset building curriculum the conversation often turned to their struggles of self esteem, shame and grief. I knew what they were feeling all too well. I decided to share my books written years ago with the young soldiers. I told them I was a warrior but fought a different kind of war. I told them they would need to drop the “wounded” eventually and only keep the “warrior” and that they had this unbelievable life ahead that was there for them once they were ready.

¹ http://www.gao.gov/new.items/d02290r.pdf
² http://www.acf.hhs.gov/programs/ocs/afi/assets.html
³ http://www.abtassociates.com/reports/Final_Eval_Rpt_8-19-04.pdf
⁴ http://www.realeconomicimpact.org/data/files/reports/ford_report.pdf
⁵ http://www.realeconomicimpact.org/data/files/reports/building_better_future.pdf
⁶ http://www.cdcu.coop/i4a/pages/index.cfm?pageid=576
⁷ http://www.iod.unh.edu/index.html
⁸ http://thomas.loc.gov/cgi-bin/bdquery/z?d111:h.r.01205:
⁹ http://www.realeconomicimpact.org/data/files/reports/2009reireport.pdf
¹⁰ http://www.realeconomicimpact.org/data/files/reports/ford_report.pdf
¹¹ http://www.irs.gov/pub/irs-pdf/p4640.pdf
¹² http://www.realeconomicimpact.org/REI-Tour-Initiatives-and-Projects/Deaf-Tax-VITA.aspx
¹³ http://www.realeconomicimpact.org/REI-Tour-Initiatives-and-Projects/Bank-of-America-BEST-Pilot.aspx
¹⁴ http://philanthropy.com/