Autism is a developmental disorder that can affect many areas of a child's life, including his communication abilities, motor function, sensory processing, feeding and self-care. Because autism can affect so many facets of life, the cost of raising a child with autism can be quite high. A study by Harvard professor Michael Ganz estimates that the cost can be well over £1.9 million over a child's lifetime. Regular expenses include the cost of speech, physical, and occupational therapies not covered by insurance, specialised medical care, and food stuffs purchased to accommodate dietary restrictions. Parents may also need to access funds for respite care, private special education, modifications to the home environment and to supplement lost income that might occur from raising a child with special needs. In some cases, these costs can be partially offset by social security benefits, but there are many requirements that must be met.
Two main types of social security income are available through the U.S. government: Social Security and Supplemental Security Income. Social Security benefits are accumulated through contributions made to social security that are withheld from a person's pay. The amount of benefits a person receives is based upon how long and how much they have contributed. As children do not work, they are not eligible to receive Social Security benefits, leaving Supplemental Security Income or SSI as the available option. SSI is a program that provides a monthly monetary benefit to those with a disability and a financial need. To receive SSI, the child and her family must meet certain eligibility requirements.
As they are defined by the SSA, autistic children usually meet the childs' requirements for SSI. To be eligible, an autistic child must be under 18 years of age. He must also fit the Social Security Administration's criteria for definition of disability and duration. According to the SSA, a child is disabled if she has "a physical or mental condition(s) that very seriously limits his or her activities." The phrase "seriously limits" is interpreted to mean that the condition has an adverse effect on one or more areas of the child's day-to-day activities. Day-to-day activities include speaking, walking, eating and any part of self-care, such as toileting or washing. Typically, an autistic child has difficulty in at least one of these areas, fulfilling the definition. Secondly, the SSA makes specific statements concerning the duration of the disability, in that it "must have lasted, or be expected to last, at least one year or result in death." While autism is not a fatal condition, there is no known cure, indicating that its continuance will last more than one year.
In order for a child to be eligible for SSI, her parents income must fall below a threshold determined by the SSA. Though this threshold changes yearly, it's important to understand some general terminology. In determining income eligibility, the SSA divides income into four categories: earned income, unearned income, in-kind income and deemed income. Earned income is any kind of wages earned through employment such as salary, self-employed income, rental income and royalties. Unearned income is any type of income given without the benefit of work, including Social Security benefits and pensions, state-sponsored disability, interest earned on investments and cash gifts. In-kind income is food and shelter that is given free or at reduced costs, such as the cost absorbed by parents who allow their adult children to reside in their homes or the costs associated by different levels of government for housing or rent assistance. Deemed income is household income of other adults residing in the same location as the parents that may be calculated into income considerations under special circumstances.
The value of the resources belonging to the parents of an autistic child own are also used to determine eligibility for SSI. Resources are defined by the SSA as any owned item that has value. In terms of finance, resources include cash on hand; the balance of checking, savings, certificates of deposit and Individual Retirement Accounts; the fair market value of stocks, mutual funds, annuities and other investment products; the redemption value of savings bonds; and the cash value of life insurance policies. The value of vehicles, land and investment properties are also considered resources, as are personal effects such as jewellery, precious metals, art, collections and antiques. Basically, the SSA can extend their definition to include any item that could be sold to provide money for basic food and shelter. The value of a home used as a primary residence is not included in resource calculations; however, resources owned solely by the autistic child or the child's siblings are included. Resource allowances vary yearly, but as a standard, the first £1,300 of a single parent's resources or £1,950 of a married couple's resources are not included in the calculation.
Process and Signficance
Determination of the eligibility of an autistic child to receive SSI benefits begins by contacting the local office of the Social Security Administration. During this phone call, arrangements will be made for completing the application for Supplemental Income. This will be done through an online website or via a paper form mailed from the Social Security office. Additionally, an interview time and date will be selected during the phone call. The interview is a required step in the SSI eligibility determination process and involves an in-person meeting at the social security office with the autistic child present. In some cases, a preliminary phone interview may be conducted prior to the in-person interview to ensure that applicants do not exceed qualifications by a large amount. In addition to the application and interview, parents must fill out a Child Disability Report online or in person that provides details about their child's specific limitations. Parents should prepare to bring proof of income documents as well as any reports concerning their child's diagnosis written by a medical professional. It should be noted that even if parents do not believe their child will qualify for SSI due to their income level or resources, they should still apply for benefits. Many state-sponsored and other autism benefit programs and subsidies may require that parents prove they are not eligible for SSI by producing a letter of rejection from the SSA.