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“Getting benefits quickly to people with the most severe medical conditions is both the right and the compassionate thing to do,” Commissioner Astrue said.  “This initiative will allow us to make decisions on these cases in a matter of days, rather than months or years.”

Social Security is launching this expedited decision process with a total of 50 conditions, including Rett syndrome.  Over time, more diseases and conditions will be added.  A list of the first 50 impairments — 25 rare diseases and 25 cancers — can be found at www.socialsecurity.gov/compassionateallowances.  

Before announcing this initiative, Social Security held public hearings to receive information from experts on rare diseases and cancers.  The agency also enlisted the assistance of the National Institutes of Health. 

Compassionate Allowances is the second piece of the agency’s two-track, fast-track system for certain disability claims.  When combined with the agency’s Quick Disability Determination process, and once fully implemented, this two-track system could result in six to nine percent of disability claims, the cases for as much as a quarter million people, being decided in an average of six to eight days.

"This is an outstanding achievement for the Social Security Administration," said Peter Saltonstall, President of the National Organization for Rare Disorders.  "It has taken Social Security less than a year to develop this much-needed program that will benefit those whose claims merit expedited consideration based on the nature of their disease.  Disability backlogs cause a hardship for patients and their families.  Commissioner Astrue and his staff deserve our thanks for a job well done.”

“Unfortunately, many hardworking people with cancer may not only face intensive treatment to save their lives, but they may also find themselves truly unable to perform their daily work-related activities and as result, may face serious financial concerns, such as the loss of income and the cost of treatment,” said Daniel E. Smith, president of the American Cancer Society Cancer Action Network. “The Social Security Administration’s Compassionate Allowances program will help streamline the disability benefits application process so that benefits are quickly provided to those who need them most.”

“This is America, and it simply is not acceptable for people to wait years for a final decision on a disability claim,” Commissioner Astrue said.  “I am committed to a process that is as fair and speedy as possible.  The launch of Compassionate Allowances is another step to ensuring Americans with disabilities, especially those with certain cancers and rare diseases, get the benefits they need quickly.”

Source: http://www.ssa.gov/pressoffice/pr/compassionate-allowances-1008-pr.htm

In 2007 Dr. Bird and RSRT co-founder Monica Coenraads announced on behalf of RSRF the landmark results of a study where symptoms of Rett syndrome were reversed in a genetic mouse model. After the 2007 merger of RSRF with the International Rett Syndrome Association (IRSA) Coenraads left the newly created International Rett Syndrome Foundation to form the Rett Syndrome Research Trust organization.  

RSRT has a new website under development at www.RSRT.org, along with a separate site exclusively for Rett syndrome researchers at www.RTTScienceWatch.org.

Upon our child’s return home from the hospital, things began to return to “normal” in terms of our day-to-day routines. As things started getting better for us, this well-written article about a young child with Rett syndrome from Pennsylvania caught our attention. Erika Miller is a two year-old girl with Rett syndrome who lives in Normalville, Pennsylvania, a town of about 3,000 people located southeast of Pittsburgh. 

Erika’s story is all-too-familiar for those of us caring for a person with Rett syndrome. The article provides a solid perspective on the challenges of pursuing a diagnosis, solicit services and supports, and caring for a person with Rett syndrome. Here are some points from the article that most of us can relate to:

• Erika seemed fine and developed like most babies her age until the age of one.
• Erika lost her ability to pickup Cheerios with her hand and put them in her mouth.
• At around six months Erika’s head growth and overall weight gain slowed, but a doctor assured her parents at that this was not uncommon.
• Early intervention Occupational therapy services were denied because “her hands were still functional”.
• The Children’s Institute in Pittsburgh denied services to her at their facility because they her goals were “not measurable”.
• Erika could need a feeding tube because she has only gained four pounds in the last 20 months.
• Erika has lost her ability to talk and use her hands, but doctors believe she understands a lot more than she expresses.
• Erika underwent more testing at the Kennedy-Krieger Institute in Baltimore, where an abnormal EEG suggested she was at risk for developing seizures.
• While Erika receives several therapies to treat her symptoms, including horse riding therapy (hippo-therapy), insurance won’t pay for things like hydro-therapy that her therapist recommended.
• Erika’s parents first learned of Rett syndrome from a medical professional other than their child’s primary care doctor. Erika’s dentist first mentioned the possibility of Rett syndrome because of her hand-wringing. Interestingly, Erika’s dentist had a brochure about Rett syndrome on hand to give to her parents.

I am not sure if the last point about the dentist having a brochure about Rett syndrome on hand would be considered “normal”. Let’s hope that in time all medical professionals will be so well-informed and well-equipped with information for their patients.

For the most comprehensive look at Rett Syndrome we urge you to consider The Rett Syndrome Handbook, from the International Rett Syndrome Foundation.