These stories represent some of the problems that many people with disabilities and their families face in an effort to build or maintain assets. The names and particular circumstances have been altered to protect the confidentiality of all involved.

Mary

Mary has Addison's disease, an autoimmune disorder that causes extreme fatigue and weakness. While she probably developed Addison's as a child, it was not diagnosed until she was 19. Mary has a business degree and has always found financial management fascinating (despite never having money of her own). Since graduating from college, her disability has progressively become more debilitating, making stable, full-time employment difficult. Despite her education and work history, Mary was never able to sustain employment long enough to establish the work credits necessary to make her eligible for Social Security Disability Insurance. Instead, she has been receiving Supplemental Security Income (SSI) for the last two years. Mary wants to work, but due to medical complications she is unable to hold full-time employment. Mary's sole source of health care insurance is Medicaid, which is tied to her SSI eligibility. Until she started saving in an Individual Development Account (IDA), she felt that the income restrictions of SSI ($85 a month) meant that she was locked out of any employment possibilities. As a freelance tax preparer and financial advisor for a few friends, Mary earns about $125 a month. Nearly a year ago, she started saving in an Individual Development Account, depositing $50 a month into her account and receiving another $100 a month as a match from the IDA program. Mary's IDA is providing her with more than the opportunity to save to start a financial consulting business out of her apartment. While she saves, Mary is building up a limited consumer base, a step she was reluctant to take without the IDA.

The problem arose one day when Mary received a letter from Social Security saying she had accumulated too many assets and that she could lose her SSI benefits and Medicaid. Mary immediately called her IDA coordinator and asked how this could happen. Not knowing all the rules and complexities, Mary's coordinator told her she would have to do some checking. Due to her heavy caseload and uncertainties about where to go to find the answers, it took the coordinator a couple of weeks to rectify the situation. The program did have Federal funding and all she needed to do was send a letter to Social Security stating that the IDA money (both Mary's account and the match money) was exempt from the asset test on SSI. While in the end everything was fine, for those two weeks Mary's life was turned upside down trying to figure out what to do if she did lose that vital income and health benefits.

To ensure that this does not happen to any other IDA clients on SSI or other public benefit program with an asset limitation, click here for the Temporary Assistance for Needy Families (TANF) and Assets For Independence Act (AFIA) Funding Declaration letter developed by CFED.

Teresa and Olivia

Teresa was born in Guadalajara, Mexico and moved to this country four years ago. Soon after moving to the States, Teresa gave birth to Olivia, who was born with Phenylketonuria or PKU, a rare disorder that renders the person unable to process many foods. New to this country with limited English skills, Teresa did not realize that as a documented immigrant she was eligible to receive prenatal care and other medical services through Medicaid. Because of her doctor's lack of understanding of Spanish and the law, Teresa continued to have limited access to necessary treatment even after Olivia's birth. Olivia, undiagnosed for nearly a year, developed mental retardation and now has multiple disabilities. Teresa has applied for citizenship and started her own restaurant. As an entrepreneur, Teresa found the costs for health care insurance that covered her daughter's significant medical expenses to be overwhelming. Once Teresa learned that she and her daughter were eligible for Medicaid, due to Teresa's low income, things seemed to be improving.

The problem for Teresa is that she was dedicated to saving money and found out about IDAs. Despite her limited income, Teresa wanted to save enough money to expand the restaurant. Unfortunately for Teresa, the state in which they live has an asset restriction for IDA programs that do not receive government funds (through TANF or AFIA) for Medicaid. Since the program in which Teresa is enrolled receives only private funding, Medicaid has threatened to stop covering Olivia until Teresa has spent all of her excess assets. Through the help of her well-informed IDA coordinator, Teresa learned that she could apply for her state's health insurance for children (SCHIP), which in her state has the same income requirement as Medicaid, but no asset test. Teresa was allowed to continue to build assets in her IDA, while not losing the valuable health care insurance that her daughter needs.

In the end, both situations for Mary and Teresa worked out due to the persistent, dedicated coordinators that took the time to problem solve. Yet simple changes to policies could have prevented stress-filled moments, as well as hours of needless work. In both cases, the states in which Mary and Teresa live have the option to make all IDAs exempt from asset tests for benefits programs yet have not done so. To contact your state's policy contact and to learn more about State Asset Building Policy, go to the Center for Social Development at Washington University's web site.