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Special Education Articles: Parenting Articles: Addressing Financial Concerns

Addressing Financial Concerns
Taken from The Unplanned Journey: Part 4
When You Learn That Your Child Has a Disability

NICHCY News Digest Second Edition February 1997
Authors: Carole Brown, Samara Goodman, and Lisa Kupper


The expenses associated with raising children can stretch a family's resources. When a child has a disability, particularly one that involves high-priced medical care, a family can quickly become overwhelmed financially. While it is often difficult to resolve financial concerns completely, there are a number of things parents can do that may help. Charlotte Thompson recommends that, as soon as parents find out that their child has a disability, two actions should be taken immediately. These are:

  • Start a program to organize and manage your new financial demands. "This not only means management of everyday money, but it also means keeping very careful track of your medical bills and payments" (Thompson, 1986, pp. 101-102). There are a number of money management guides available that explain how to do this.
  • Seek information about any and all financial assistance programs. "If the state agency caring for handicapped children is contacted immediately, it may be able to assume financial responsibility for your child's care right from the start" (Thompson, 1986, p. 102).

Often, so much attention is focused on the provision of health care that doctors and other medical staff may not mention available sources of financial aid. Many states have passed legislation intended to help families of children with a disability address their financial concerns, but parents will need to be "well focused and persistent" to get the answers they need.

Many children with disabilities are eligible to receive Supplemental Security Income (SSI) benefits, based upon their disability. A recent Supreme Court decision (Sullivan v. Zebley) has created changes in the eligibility requirements for these benefits. Because of these changes, many more children are now eligible than in the past. Some children who formerly were denied benefits (i.e., after January 1, 1980) may even be eligible for back benefits. Therefore, it is a good idea for all families with a child who is blind or who has a disability to apply for SSI. If a child is found eligible for SSI, he or she is automatically eligible for Medicaid benefits, even if the family income is higher than what is traditionally required for Medicaid in that state. This is very important for children with disabilities who may have many medical needs. (Clark & Manes, 1992)

If your child qualifies for Medicaid, most early intervention services can be paid for by Medicaid. If your child qualifies for Medicaid, it is important to have him or her assessed by a provider qualified to perform the Early Periodic Screening, Diagnostic, and Treatment (EPSDT) program. If an EPSDT program determines that your child has a condition that requires treatment because of "medical necessity," then it can be paid for by Medicaid. Furthermore, each state has a "Child Find" system, which is responsible for locating and assessing children with disabilities. This is required to be free by Federal law. But sometimes, even though there is not supposed to be a waiting list, it can take a long time to get your child assessed. Therefore, it is important to know about what other resources can be used to get help for your child.

Private insurance benefits are one such resource. Usually, nursing, physical therapy, psychological services, and nutrition services can be reimbursed by private insurance. In some cases, occupational therapy and speech therapy are also reimbursable. Educational expenses related to a child's disability are only rarely covered by insurance. However, it is useful to keep track of educational expenses, because these are deductible on your Federal income tax returns.

Some additional resources to contact in your search for financial assistance include:

  • Hospital social workers;
  • Public health department;
  • Public health nurses;
  • Volunteer agencies;
  • Disability organizations; and
  • State government agencies (usually listed under "State Government" in the telephone book), particularly those departments that oversee programs for children with disabilities.

Because searching for assistance may involve a lot of telephone calls, it is a good idea to have paper and pen at hand to record the names and telephone numbers of all those you contact, as well as any referrals they give you. Whether or not you believe your income is too high for your family to quality for financial aid:

"...the key is to keep trying -- to get more information, to follow up leads, and to continue applying for various types of financial assistance. This may seem like an endless paperwork maze to you, but with luck some of the paper at the end will be the green kind that can help you pay your child's medical bills. Keep at it." (Thompson, 1986, p. 103)

NICHCY News Digest Second Edition February 1997
Parenting a Child with Special Needs: A Guide to Readings and Resources

National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, DC 20013
1-800-695-0285 (Voice/TT)
E-mail: nichcy@aed.org
Web site: http://www.nichcy.org/

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