Project Shui for Tay-Sachs
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*Video or Pictures of Tay-Sachs

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   *
Welcome From Shui
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   *Rachaeli's Friends
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Thank You From Shui
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What is Shavuot?
  
Shavuot & Shui's Sister

What is Tay-Sachs?
  
Tay-Sachs Diagnosis:

      Part I

      Part II

   Genetics Made Fun
      *Lysosomes The Movie
      *Genetics 101 Video
     
Narrated by Alec Baldwin
   Genetics 101 Article

*Inspirational Videos

  
*Beautiful Faces of Lysosomal

  
*Tay-Sachs Talk
   *Connor Hopf Cure Tay-Sachs
   *2010 Faces of Tay-Sachs
  
*My Soul Sister-Molly Grace
  
*Our Star Dakota
   *Rachaeli's Song of Love
   *Elise-A Child Living with Tay-Sachs
   *Last Laugh
   *Meet Gavin

Tay-Sachs in the Media
   *
Glee Sectionals
   *Grey's Anatomy Sweet Surrender
   *Law & Order SVU MERCY
   *
21 Below Documentary
Legal & Financial Issues

   What is Wrongful Life?
   Right to Live in the United Kingdom
   How to Pay Medical Bills?
   Social Security Disability
   CHIPRA-Insurance for Kids
   Medicaid Waiver Programs
   Katie Beckett Medicaid
   Who is Katie Beckett?
 
 Why We Need Katie Beckett Waiver?

  
Eligibility for Katie Beckett
   Katie Beckett in Georgia
  
Katie Beckett's Going Home
   (from People Magazine 1981)

Treatment or Cure
  
Canavan Pioneers
   *Gene Therapy
   Jacob Sheep Sensation
   Article in Forward-Jacob Sheep
   *Stem Cell Transplants
   Enzyme Replacement
   Substrate Inhibitors
   Should I Try Zavesca?
   Letter for Insurance 
      Approval for Zavesca
   Chaperone Therapy

In-Home Medical Care
  
Home Health Care
   Respiratory/Secretions
   Coping Strategies
  
Coping with Humor w/ Shui's Dad
Rachaeli's Story
  
Shocked by Tay-Sachs Article
The Project Shui Family
  
Mommy's Online Journal
   Abba's Online Journal
   Shui's Fun Pages

Guestbook
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Who is Katie Beckett? 


Katie Beckett, from Iowa, became severely handicapped after an illness that began at age 6 months. Her family fought to allow her to be cared for at home rather than a medical institution. In 1981, Ronald Reagan announced the Katie Beckett Medicaid program to provide home health care for handicapped children.

Read more on Who is Katie Beckett in Answerbag:
http://www.answerbag.com/q_view/2148623#ixzz0upZ3uoxO 


*****

Why Do We Need The Katie Beckett and Other Waivers? 

* Medicaid Waivers are state-run programs that use federal and state funds to pay for health care for people with certain health conditions. Without Medicaid Waivers, thousands of children with special health care needs would either go without health care (because of their health condition and/or financial situation), or would be institutionalized in order to qualify for Medicaid. Medicaid Waivers permit states to use flexibility to design publicly financed health care systems outside of certain federal Medicaid statutory and regulatory requirements. Each state has different Waivers with different eligibility requirements or services. Two Medicaid statutes are currently waivered: 1915 and 1115.

From KASA- Kids As Self Advocates:
http://www.fvkasa.org/reports/katie.php Kids as Self advocates




Katie Beckett Waiver Eligibility Requirements (as defined by the State of Wisconsin) 

Katie Beckett Program - Wisconsin Medicaid Eligibility and Benefits
Purpose of the Program:

The Katie Beckett Program is a special eligibility process that allows certain children who are residents of Wisconsin with long-term disabilities or complex medical needs, living at home with their families, to obtain a Wisconsin Medicaid card.

Children who are not eligible for other Medicaid programs because the income or assets of their parents are too high, may be eligible for Medicaid through the Katie Beckett Program, if they meet all the following eligibility criteria:
    1.    The child is under 19 years of age and determined to be disabled by standards in the Social Security Act;
    2.    Requires a level of care at home that is typically provided in a hospital or nursing facility;
    3.    Can be provided safe and appropriate care in the family home;
    4.    As an individual, does not have income or assets in his or her name in excess of the current standards for a child living in an institution; and
    5.    Does not incur a cost at home to the Medicaid Program that exceeds the cost Medicaid would pay if the child were in an institution.




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Katie Beckett Waiver as Defined by the State of Georgia 

TEFRA/Katie Beckett

Established in 1982 under the Tax Equity and Fiscal Responsibility Act (P.L. 97-248), the Katie Beckett Medicaid Program (KB), permits the state to ignore family income for certain disabled children. It provides benefits to certain children 18 years of age or less who qualify as disabled individuals under §1614 of the Social Security Act and who live at home, rather than in an institution. These children must meet specific criteria to be covered. Qualification is not based on medical diagnosis; it is based on the institutional level of care the child requires. Title 42 Code of
Federal Regulations outlines the criteria used to determine eligibility.
http://georgia.gov/00/channel_title/0,2094,31446711_133613701,00.html



 People  -  Archived Article - November 30, 1981 - Vol. 16 No. 22Article Link:  http://www.people.com/people/archive/article/0,,20080805,00.html

Katie Beckett Is Going Home from the Hospital
Because Nothing Angers the President Like Red Tape 

By Giovanna Breu, Margie Bonnett
  
At home in Cedar Rapids, Iowa, 3½-year-old Katie Beckett sits at a Sesame Street table and plays hostess, daintily serving water in tiny teacups to imaginary playmates. It is a heartwarming scene from every American girlhood, with one cruel difference: Katie is only a visitor at the apartment on Bowling Street. She has never spent the night in her own bedroom. A combination of nerve damage to her diaphragm, which impairs her breathing, and a bureaucratic catch-22 has forced Katie to live in a corner of the pediatrics intensive-care unit at nearby St. Luke's Methodist Hospital. Next month that will change. But when Katie goes home for good, the reason will not be some new medical miracle but the intercession of a man she has never met, Ronald Reagan.

The President told her story at his recent press conference to illustrate the evils of shortsighted federal regulations. Although Katie's doctors agreed she could safely go home, Reagan explained, the child was kept in the hospital because of Medicaid rules. They forbid paying for her home care, even though the cost to the government would be one-fifth the current hospital charges of $10,000 to $12,000 per month. "When we see a case of this kind," Reagan said, "it reveals that hidebound regulations can be a tremendous expense to the taxpayers and do no good for the patient."........

To read the full Archived story from 1981, click here

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