Johnette T. Hartnettⁱ

INTRODUCTION

It is a privilege to be asked to welcome in the New Year with an article about the TAX FACTS initiative - a grassroots campaign in 13 cities to bring financial and tax education to low-income persons with disabilities. The TAX FACTS campaign is setting a new agenda for linking the role of assets in helping people with disabilities gain self-directed economic freedom. We receive support from NCB Development Corporation (NCBDC) /National Disability Institute (NDI); National Cooperative Bank; the Law, Health Policy and Disability Center, University of Iowa; The Office on Disability, U.S. Department of Health and Human Services; as well as numerous others. Many of EQUITY's lead articles over the past year have documented the need and the barriers to asset development for persons with disabilities. These articles generously set the framework for this article.

A PERSONAL STORY

When my Dad died he was 81 years old and a college professor for over 50 years. He taught biochemistry to many young students who today are entering retirement after successful years in the field of Medicine. My father's first career choice was to be a priest (which I am forever grateful did not happen) and his second choice was to be a doctor. He was barred from both careers (even though he graduated with honors) because he had Cerebral Palsy. So, as he used to tell me, he decided to help others become doctors even if he could not. He nourished his spiritual side by working in a small Catholic College in Northern Vermont where he always began each science class with a brief prayer of Thanksgiving.

Dad grew-up before the flurry of disability legislation that promoted equality and independence. As a teenager he worked in his Father's gas station on Long Island and told the story of how some customers preferred he didn't pump their gas because he made them uncomfortable. My Dad told me this story some 60 years later and I was taken at how the memory seemed so fresh in his mind. Although he didn't have the benefit of growing up in today's advocacy environment, he made a place in the world for himself. He excelled in the sciences and was the first generation of his immigrant Irish family to graduate from college. He had a 56-year marriage and four children.

In his final years I became his caregiver and overseer of his finances. I watched as the aging process disclosed his frailties and magnified his disability. For the first time I saw his disability close-up. I became aware of the many challenges he faced and realized the difficulty my mother's earlier death had presented. To be honest, I had never thought about my Dad having a disability. I never noticed his odd gait or slurred words. As I took over his finances, I was stunned at the system he used to keep track of his monthly checking account and annual tax information. I'd never thought about the challenges of doing what many of us consider routine.

Then in his final years, I wondered how long he would live and if there would be enough money to cover his expenses and provide him with the care and dignity he so deserved. After my Mom died, Dad declined steadily, which is common for men in general, even without a disability. When Home Health services could no longer keep up with Dad's needs, he asked to go to a nursing home. Once there, he fell and broke his hip - the first fall in his 78 years. The nursing home's private room cost $5,400 a month that Dad paid until I was able to move him into an assisted living over 18 months later.

Only after I took on the role as his caregiver did I begin to understand the enormous challenges, financial as well as personal that my Dad faced. I wondered why he never asked for help or planned better for his long-term care knowing his physical condition. Maybe it was because of the generation he grew-up in. He once told me his parents brought him to a special school for "spastics" on Long Island in the late 1920's where he spent a weekend. His parents asked him if he would like to live there and he said no. He told me that he made up his mind then and there that he would make it in the non-disabled world. While getting ready to graduate from high school, one of his teachers shared a brochure about a small college in Vermont that cost about $500 a year. Dad applied and never turned back.

About a year before he died I accompanied Dad to a doctor's appointment for an eye exam. The doctor resorted to doing a manual exam because the state of the art equipment did not accommodate Dad's shaking head. I remember my Dad's kind eyes and patient resolve when he looked at the young ophthalmologist and said, "My dear, don't you think it is time we make examinations accessible?"

Although my Dad had what we all would consider a successful life, even for someone without a disability, his final few years were turbulent and expensive. He never had a tax advisor or accountant help him sort through his financial picture until it was too late. As a result he never accessed available tax credits that would have helped him with work accommodations or home modifications that in his later years might have allowed him to reside in his own home and avoided the nursing home altogether. He never thought about having an actuary estimate his life expectancy and related costs for someone with his disability. He lived out his last few years in facilities that although accessible were often not the friendliest environments. I remember one nurse asking me what my Dad's problem was and how her eyes glazed over when I told her about his Cerebral Palsy.

If my Dad were here today and was part of this groundbreaking movement about asset development he would probably smile and remind me in his own dignified way that it is about time.

THE TAX FACTS STORY

TAX FACTS: How It Began

As with any good initiative, TAX FACTS began in the field with real people one step at a time. A small group of concerned individuals working in poverty law, disability, housing, higher education, government and the financial service industry started meeting monthly at the NCB Development Corporation to understand how disability could become part of the asset development movement on behalf of low-income Americans. Participation included leading government representatives from the National Institute on Disability and Rehabilitation Research, the Office of Disability Employment Policy at the U.S. Department of Labor, the Social Security Administration, the Rehabilitation Services Administration at the U.S. Department of Education, the Law, Health Policy & Disability Center, the Internal Revenue Service, and the Federal Deposit Insurance Corporation.

Meanwhile a tax analyst with a disability working on the Internal Revenue Service's national Stakeholder Partnership Education and Communication (SPEC) initiative suggested to his boss that a brochure about underutilized tax provisions for persons with disabilities could help the millions of tax filers with disabilities. The evolution of this brochure was shared with the Office on Disability (U.S. Department of Health and Human Services) that provided guidance for its development.

At an April 15, 2004 kick-off in Washington, DC, funded by the National Cooperative Bank and the NCB Development Corporation and co-sponsored by numerous public and private agencies and institutions of higher learning, a 100 leaders came together to join efforts and TAX FACTS was born.

TAX FACTS: What's Happening!

The TAX FACTS campaign is a collaboration of private and public national and local organizations to bring financial education and tax preparation for persons with disabilities and their families to existing Volunteer Information Tax Assistance (VITA) sites in 26 cities over the next three years. Each VITA site is organized by a coalition of local volunteer non-profit agencies in collaboration with the local IRS territory office and provides free tax preparation and filing to low-income individuals. The agencies that make-up these coalitions have prepared over 100,000 returns in 2003.

TAX FACTS: Purpose of the Initial Visits

The TAX FACTS campaign leadership was invited through the SPEC program to 11 cities (Boston, Denver, Flint, MI, Indianapolis, LA, Miami, Minneapolis, New York City, Oakland, West Palm Beach, and Wichita) to join existing tax coalitions that had expressed an interest in expanding their capacity to reach more persons with disabilities. Only one city, Boston, had kept data on the number of people filing for the Eared Income Tax Credit (8.5% 2003) that had a disability. The goal of the initial meetings was to bring together local disability organizations interested in joining the VITA coalitions and work out the issues and concerns inherent to getting the project off the ground with limited resources. In two cities, Birmingham, AL and Manchester, NH, the ARRP Tax-Aide national initiative offered a slightly different model for building tax assistance. Disability organizations would start a coalition from the grassroots and train volunteers to do the tax filing.

TAX FACTS: What the Coalitions Need

The first set of meetings invited approximately 300 people to participate in meetings in each of the thirteen cities. After attending the initial meetings, several themes became clear. Coalition members expressed need for:

• information about environmental and program accessibility
• information about working with people with a variety of disabilities
• information about how different cultures intersect with disability
• information about the availability of resources for accommodations

Coalition partners agreed that a disability work group and strategic plan for next steps was necessary. In addition, in order to create a baseline for the first year it would be necessary to collect information about the abilities of filers. The best way and most sensitive way of doing this are still being discussed to protect the privacy as well as the dignity of each filer.

TAX FACTS: What the Disability Organizations Need

The disability organizations that attended this first round of meetings were concerned about the following:

• how public benefits interact with the Earned Income Tax Credit or Child Care Tax Credit for people on SSI;
• how to build trust with their members as to the benefits of filing a return even if not required by law
• How to tap into the financial education network that would be suitable for people of different abilities.

One coalition member present explained outreach that is already underway for persons on SSI who are working but had never filed. This effort identified 100 people on SSI and 62% of those eligible for a return received one for the first time. As a result, over $36,000 of new dollars was put into that community. We believe this kind of outcome is a win-win for everyone! Other concerns were about how to provide basic information to the disability community about financial education and tax preparation. Many benefit counselors expressed a need for more information and asked for training and materials.

TAX FACTS: What Is Happening Since the Fall Meetings

The general consensus from both the VITA coalitions and disability organizations was the need to share information and continue dialogue. In a recent follow-up call with all site coordinators it was obvious that the work has begun despite the limited resources and stretched capacity of staff. Both groups asked for help in understanding issues of accommodation and access and both groups agreed to share materials and information that would help build their knowledge and capacity to serve more people with disabilities in the coming 2005 filing season. Examples of work being accomplished by various coalitions include:

• Some coalitions have already invited disability organization members to attend ongoing committee work and others are starting their own subgroups on disability.
• Some disability organizations are already making visits to the coalition non-profits and speaking before boards and membership to promote the project and the need.
• Some of the coalition member organizations are extending invitations to other disability organizations unable to attend the initial fall meeting.
• Most of the coalitions are beginning to design an outreach strategy as well as identify existing preparation sites for accessibility.

TAX FACTS: Why We Need National Outreach

EQUITY has documented well each month why the asset development movement is critical for persons with disabilities. We have learned that having money in the bank and owning assets increases one's health outcomes and quality of life. We also learned from EQUITY that people who own their own homes often have good jobs and opportunities for education beyond high school. We know that home ownership for people with intellectual disabilities is in the single digits and that homeownership for people with other disabilities is in the 40 percent bracket. We have also learned that tax provisions and tax credits that were written to help people with disabilities, whether rich or poor, are often underutilized because of lack of information and poor communication networks between our financial service world and the disability world.

Yet, despite decades of advocacy and legislation, a child born today in the United State with a significant disability still has little chance of gaining economic self-sufficiency. Advances in health care, assistive technology, education independent living and employment have helped some people with disabilities live better lives. Yet, for many people with disabilities accessing the American Dream is just not possible. Studies tell us that about 30 percent of people with disabilities do not have checking or savings accounts compared to 22 percent of people without disabilities. Without access to credit or financial services, the potential and likelihood of economic growth is slim regardless of the incentives put forth.

Over the past fifty years, legislation has changed the way people view disability. In the old days, we helped families to make sure that their loved ones were taken care of and were safe. In those days we believed that people with significant disabilities were better off in institutions and not working. We found it easier than making room in our communities for people of all abilities to co-exist and be neighbors. As a culture, we were not yet ready to make room for people that were "other" than ourselves.

Today we think differently about people with disabilities thanks to legislation, policy and advocacy. The old philosophy that supported isolation and marginalization has given way to a new philosophy with new language. Current federal and state efforts reflect this new philosophy in demonstrations and waivers that allow people on public benefits to work and earn more and save more. Many people who receive public benefits such as Supplemental Security Income (SSI), Medicaid, housing assistance or Food Stamps are working and making their lives better. They want to save in order to become financially independent and live on their own. They are willing to work hard and do what it takes- just like everyone else.

We all need to become smart about money. We all need to learn about financial services, have bank accounts, and save regularly. We all need to understand how to use our existing assets to build future assets that will help us live fulfilled and engaging lives. We need financial planning that specializes in helping people of all ages and all incomes, with and without disabilities, understand their future financial needs. We need to ensure that our children's children are prepared for their tomorrows because after all, it is about time.

Click here to read about the specific goals of the TAX FACTS Campaign

To find out more about joining the TAX FACTS coalition to help VITA sites in your city, contact:
Johnette T. Hartnett
202-218-7284
JHartnett@ncbdc.org
www.mastermymoney.org
http://disability.law.uiowa.edu/lhpdc/projects/assetdevtaxpol.html