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by Mitzi Waltz

It is relatively rare for Tourette Syndrome to become a disabling condition, in the sense of interfering with your ability to work or care for yourself, but that’s a reality for a few individuals. It’s a relief to know that some help is available—even if you never have to use it.

The most important programs of this type are run by the Social Security Administration. Supplemental Security Income (SSI) and Social Security Disability (SSD) offer a small income support payment for adults with disabilities whose condition causes “marked and severe functional limitations” and will last over a year. SSI is income-based, so only those who are currently on a very low income or unemployed will be eligible. For those who have been working but need help due to worsening symptoms, SSD is an alternative. It is available to some people who are still working but whose earnings have been severely affected, not only those who have become unemployed. You need to have paid into the Social Security system to be eligible for SSD.

The kind of functional limitations Social Security looks for include difficulty with walking, speaking and self-care. These will apply only to those few individuals who have very severe and frequent physical tics. However, some people with TS have been able to argue that symptoms other than severe physical impairment (persistent coprolalia or copropraxia, for example, or severe OCD as well as TS) have impaired their ability to work, communicate, or socialize with other people in order to gain eligibility.

To find out if you are eligible for SSI or SSD, contact your nearest Social Security office. The paperwork is quite detailed, and you’ll need to submit medical evidence and be interviewed by a representative of the agency. In some cases, you will also be examined by a doctor working for the Social Security Administration.

Because of the length and complexity of the paperwork, and the importance of understanding the complicated process, it’s a very good idea to get some help from an expert when you apply. On the web, you might want to look At http://www.napas.org/ (National Disability Rights Network), and http://www.ilusa.com/links/ilcenters.htm (to find your nearest Independent Living Center-an advocacy resource with over 500 locations, many of which are state supported).  Some law firms also specialize in disability benefits work. The majority of applicants are denied on their first try, but many more are successful when they reapply. Having good advice from the start will give you the best chance of success.

Obtaining SSI or SSD can provide significant additional benefits. The most important of these is health care coverage through Medicare, the same program used by many retired individuals. In fact, some people with disabilities apply for benefits primarily to gain this comprehensive health insurance coverage. SSI recipients gain this coverage automatically, while SSD recipients only get Medicare if they continue on the program for a long time.

Recipients of these benefits may also become eligible for other help, such as housing assistance programs for people with disabilities (many of these are local or state-run rather than Federal, but almost all consider receipt of Social Security benefits as acceptable proof of serious disability) or help in getting back into paid employment.

In fact, you can keep some or all of your Federal benefits for quite a while if you are eventually able to get a paid job—for example, if your symptoms become less severe later on, or if you are able to identify a type of work that you can do despite them. Some help with vocational training and expenses related to returning to work is also available.

Another health-care insurance program, Medicaid, is available to some people with low incomes, regardless of disability status, if they fit certain criteria.

Some cities and states also have their own income support or health insurance programs for people with disabilities, or related services. Contact your state’s social services department for more information. For adults with TS who are getting close to retirement, additional benefits are available for older Americans.

The Social Security Administration is online at http://www.ssa.gov/.

You can find out more about Medicare and Medicaid (for older citizens) at http://www.cms.hhs.gov.

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