Supplemental Security Income Presentation
By Karen Higginbotham *
Louisiana's 7th Congressional District Candidate Forum on Disabilities
August 10, 1996

Supplemental Security Income (SSI) is a program that is administered through the Social Security Administration (SSA) that provides cash assistance and access to health care for different groups of people. Our focus is on children with developmental disabilities.

To qualify for SSI, the child must be from a low income family and meet income and resource criteria set by the SSA. The child must fall within a medical listing or qualify through the Individual Functional Assessment (IFA) which can determine that a child can qualify when a combination of several significant limitations exist.

When a child qualifies for SSI, their parents receive for the child a check anywhere from $1 to $470 (the maximum amount can differ from state to state -- also that was the maximum amount for 1996) a month, depending on the family's income. Keep in mind that even if a family receives the maximum amount of $470 a month for their child, the family's income is still considered low. In most states, including Louisiana, the child also receives Medicaid for their medical needs, which is very crucial since many insurance companies will not insure a child with disabilities.

The cash benefit that the parents receive for their child can cover a broad array of items or services. There are many medical items and/or services that Medicaid does not cover, including diapers. Non-medical items the cash benefit is used for is increased air conditioning or heating, special eating utensils, extra clothing or specially adapted clothing, special equipment, special food, home modifications, transportation costs, etc. These are some of the extraordinary costs above the normal cost of child rearing that can be associated with a child's disability. In some cases, the cash benefit helps to make up for lost income when one parent must quit their job to stay home to take care of the child's special needs.

There have been reports of fraud and abuse in the children's SSI program. The news media have made reports of parents "coaching" their children to act "crazy" so the parents can receive a SSI check for their child. While there may be some isolated cases of this, investigations have been made from the SSA, the Inspector General's office in the Department of Health and Human Services and the General Accounting Office in which they found no evidence of "coaching" and plenty of legitimate reasons for the program's growth (SSI Lifeline for Children with Disabilities - Bazelon Center Spring 1995).

When the IFA came to be from what is known as the Zebley decision in 1991, it opened the door for many children who previously could not qualify for SSI under the medical listings, but have a combination of impairments that affect their development. The Individual Vocational Assessment shows whether it is possible for someone to work. Although this is available for adults, it is not relevant for children since children do not work. The parallel method, the IFA, was developed for children which shows whether a combination of impairments affect a child's development. The Zebley decision has allowed an increase of children on SSI, but that increase has tapered off.

SSI has been under attack by some in Congress for the last several years. There was legislation (January 1995) to remove the cash benefit of SSI for all children who were on the roles. Fortunately, that legislation was reconsidered which helps some of the children on the SSI program.

There is currently legislation to eliminate the IFA from the SSI eligibility criteria. This legislation would take approximately 300,000 children of the approximately 960,000 children with significant disabilities from the SSI rolls over the next six (6) years. Not only would these children lose their cash benefit from SSI, many would lose Medicaid, leaving most of these children without any type of health insurance.

SSI is a program that has worked and still working for low income families who have children with significant disabilities. The program allows parents to be the decision makers of their children's needs, since parents know their child's needs better than anyone else. There is no bureaucracy or expensive red tape to have to go through in providing for what the child needs, when the child needs it. For many families, it is not easy asking for help, but as we have learned, our children need this assistance so that they can reach their fullest potential in life.

There was a time when the only way that parents could get assistance for their child with disabilities was to place them in an institution, which has a much higher financial price tag, as well as quality of life price tag, than the SSI program has. While some families may make the decision of institutional care for their child, for many other families there is only one choice that can be made - which is to care for their child at home where the child can receive the love and nurturing that ALL children need and deserve.

SSI must be protected for children with disabilities, who are loved and valued by their families, and in low income families who need it. My beautiful eight (8) year old daughter, Alison, is one of these children. Congress should fix the program to weed out any fraud and abuse that might be out there, but not destroy the very program that enables families to the job that families should do, which is to raise and love their children to help them can grow into independent, productive citizens. I call this personal responsibility.

Note: Karen Higginbotham was a previous name. I now go by Karen Lagrange Coleman.