People With Disabilities (IBS or Other): Give Feedback to the U.S. Social Security Administration

The following opportunity appeared today on the Facebook page of the Disability Rights Education and Defense Fund (DREDF), an established and well-regarded disability organization located in Berkeley, California. The request for interviews with people with disabilities currently receiving benefits from Social Security comes from the University of California-San Francisco Disability Statistics Center, which, according to the description below, is doing this needs assessment on behalf of the Social Security Administration.

This call for participants applies to people with disabilities receiving Social Security Disability Income (SSDI), Supplemental Security Income (SSI) or Social Security retirement benefits. There appear to be no restrictions on an interviewee’s geographical location within the United  States, and the telephone number provided to inquire about participating is toll free.

Many people with IBS receive disability benefits, either on the basis of IBS or at least one other disability or long-term medical condition. Some conditions that are statistically likely to overlap with IBS are fibromyalgia, chronic fatigue syndrome, endometriosis, interstitial cystitis, vulvodynia, and temporomandibular joint disorder. Many people with IBS also have mental health diagnoses, such as anxiety or depression, either as preexisting conditions or as a result of the demands of living with severe IBS. However, some people, including some IBS Impact members, have other impairments that are not related to IBS in any way. This post is directed at any Social Security beneficiary in any of those groups. This is a chance to give direct feedback on disability-related service issues to a U.S. government agency that eventually touches the lives of almost every U.S. citizen and many legal residents.  The full text of the announcement, as posted by DREDF, is below.

Important message from researchers at the UCSF Disability Statistics Center:

“Are you a person with a disability (including cognitive, hearing,
vision, or physical) who receives benefits from the Social Security
Administration? Benefits can mean SSI, SSDI, or retirement.

If so, we’d like to talk with you!!

Researchers at the UCSF Disability Statistics Center want to know
more about your experience applying for Social Security benefits
and your interactions with the Social Security Administration.
We are conducting a needs assessment for the Social Security
Administration so that they can communicate better with their
beneficiaries who have disabilities. Phone interviews will be
approximately a 30-45 minutes long.

For more information, or to participate, please call this toll-free
number: 1-855-209-9538

Please speak clearly and slowly to leave your name and number.
A UCSF researcher (Mel) will get back in touch with you to tell you
more about this study.

Or you can email:
Alice Wong, Staff Research Associate II
UCSF Disability Statistics Center”

IBS Impact is also interested in the experiences of people with IBS in obtaining disability benefits in any country. It appears, from anecdotal information from various sources, that although some people are able to qualify for benefits on the basis of IBS alone, this is generally difficult, and many people who do obtain them have additional disabilities that qualify more easily. This is a possible future area for advocacy if there is sufficient information on the needs of IBS community in this area.

In the U.S., IBS is recognized by the Department of Veterans Affairs as a presumptive service connected disability for Persian Gulf veterans.  IBS is not specifically recognized by the Social Security Administration at this time, (scroll down the linked page to the question about disability)  although some people with IBS do receive benefits. The IBS Impact main site has an article on its advocacy page, that partially addresses Social Security issues. Scroll down on the linked page to find it. Additional links for disability benefits in several other countries will be added to the site in the near future. Any reader who would like to offer input on any disability benefit issues, please leave a comment on the blog or use the contact links on the home page of the main site.

EDITED TO ADD: As of February 10, 2012, the links page of the IBS Impact main site has been updated to include a new category on disability benefits. Current countries represented are the United States, Canada, the United Kingdom, Ireland, Australia and New Zealand.

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