Supplemental Security Insurance and Medicaid for Children with Ichthyosis (2005)

By David Gates

Supplemental Security Income (SSI) Overview  SSI is a program administered by Social Security that provides a monthly cash benefit and, in most states, Medicaid (also know as Medical Assistance in some states). The amount of the cash payment depends on the other income the individual, his/her parents (for a child under 18) or his/her spouse has and whether the individual (for adults 18 and older) is paying their share of household expenses. Social Security sets the maximum amount SSI pays every January. In 2005, it is $579 a month ($869 for a married couple). Some states pay an additional amount above the federal SSI payment, which is known as the "state supplement." For example, Pennsylvania pays an additional $27.40 per month on top of the federal SSI payment for Pennsylvania residents receiving SSI in 2005 ($872.70 for a married couple.)

Why SSI is important for children with ichthyosis:  In addition to providing additional income for lower income families, SSI is important in most states because it is the way most children with serious disabilities or medical conditions quality for Medicaid. Medicaid comes automatically with SSI; a separate application is not necessary in every state EXCEPT: Connecticut, Hawaii, Illinois, Indiana, Minnesota, Missouri, New Hampshire, North Dakota, Ohio, Oklahoma, and Virginia. Note: The States above may not use more restrictive standards in determining Medicaid eligibility for persons on SSI than those in effect on January 1, 1972. These states must also provide for deducting incurred medical expenses from income through "Medicaid spenddown" so that individuals may reduce their income to that state's income eligibility level.

Why Medicaid is important:  Medicaid is important because it provides free health insurance and, in many states, covers medical services, medications, and equipment well beyond that covered by many commercial health insurance policies, at least until age 21 (due to a federal law known as 'EPSDT' which ends at age 21). For example, many skin creams that might not be covered under commercial insurance are commonly covered under Medicaid.

Who can qualify for SSI:  Because qualifying for SSI is the most common way children with disabilities or serious medical conditions qualify for Medicaid, this article will discuss the SSI eligibility criteria. There are 3 main eligibility criteria for SSI:
  1. Assets - For children and adolescents under 18, certain assets in their own name and certain assets in their custodial parent(s) name are considered in determining eligibility. Assets that are considered include money in any bank accounts, stocks, money markets, life insurance if it has a cash surrender value, real estate that is not the childs home, cars (if more than one), and boats. In a one-parent household, the parent and child together cannot have more than $4000 in countable assets, of which no more than $2000 can be in the child's name. In a two-parent household, the parents and child together cannot have more than $5000 in countable assets, of which no more than $2000 can be in the child's name. Assets that are exempt (don't count towards the eligibility limit) include the home the child lives in, furnishings, and one car. Some states, such as Pennsylvania, provide Medicaid (but not SSI) to persons under 21 who have countable assets above the applicable SSI limits if they meet the other SSI criteria. In other words, they have no assets limits for Medicaid for persons under 21.
  2. Income - For children under 18, income of the custodial parent(s) is counted as well as any income in the child's name. However, if the child is out of the parent's home for more than a month, parental income is no longer counted (until the child returns home). For persons 18 and older, parental income is not counted. However, income of a spouse, if any, is counted. Although there is a specific monthly income limit, it is impossible to tell just from the limit whether the individual's income is above or below the limit because all or portions of certain types of income are not counted. Furthermore, the rules about how much income of a parent or spouse is counted are very complicated. To get a reasonable idea of whether you or your child meet the income and asset limits, go to their website click here. If you do not have access to the Internet, you can call Social Security at 1-800-772-1213. Ask the representative to have someone call you back to do an income and assets phone screening for SSI. For more information about eligibility for SSI, visit their website.
  3. Disability - The individual must meet Social Security's disability criteria (or be 65 or older). Having a particular diagnosis does not, by itself, meet those criteria. For children and adolescents under 18, their condition must "meet or equal" certain criteria known as the "listings of impairments." These "listings" are divided by the bodily system affected. One year ago, Social Security added a "listing" specific to ichthyosis. This means that there are now criteria specific to ichthyosis for making the disability determination necessary for SSI and Medicaid (when Medicaid eligibility is dependent on disability). Those specific criteria can be found at the SSA website.  Basically, Social Security requires medical documentation that a child with some form of ichthyosis has had extensive skin lesions for at least 3 months, despite continuing prescribed medical treatment. "Extensive" skin lesions are lesions that "involve multiple body sites or critical body areas, and result in a very serious limitation" to basic functioning like walking, using your arms or your hands. Children whose lesions don't last 3 months may still meet Social Security's disability criteria if they have frequent flair-ups. Social Security will consider how frequent and serious the flare-ups are, how quickly they resolve, and how the child functions between flare-ups. Social Security will also consider the extent to which the child must stay in a protective environment (e.g. air-conditioned rooms), amount of pain suffered, the extent to which treatment improves child's ability to function, and side effects from treatment. Children who have additional medical, cognitive, or behavioral problems may also meet Social Security's disability criteria if, taken together, their multiple problems would "equal" one of Social Security's "listings." Since medical documentation is required, families should take a copy of Social Security's Skin Disorders "Listing" to the child's treating physician so the physician knows what information must be documented for SSI or Medicaid purposes.

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