2009 Legislative Session Ending

June 10th, 2009

The 2009 legislative session is over. While our efforts and those of other advocacy organizations served to increase awareness of this serious issue, a HOSPITAL LEVEL OF CARE WAIVER WAS NOT PASSED in this session.
Evan White has been granted an additional short term extension. He and his family continue to live on a “stand by” basis while the Department of Aging and Disability continues to consider his case.


Awards Update

May 26th, 2009

Saving Evan White Wins Four Awards at Tellys and Lone Star EMMY Nomination

The documentary short “Saving Evan White” captured critical acclaim at this year’s 30th Annual Telly awards and the Lone Star EMMY awards.

Houston producer/director Karen Aptekar’s film won Bronze Telly awards in four categories in March. The award categories included: Social Issues, Low Budget, Charitable/Not for Profit and Use of Music.

Founded in 1978, the Telly Awards is the premier award honoring outstanding local, regional, and cable TV commercials and programs, the finest video and film productions, and online film and video. The Telly Awards annually showcases the best work of the most respected advertising agencies, production companies, television stations, cable operators, interactive agencies, and corporate video departments in the world. The Telly Awards receives over 13,000 entries annually from all 50 states and countries around the world.

“Saving Evan White” is also a Lone Star EMMY Advanced Media nominee. This EMMY recognizes creative and innovative approaches to the practice, presentation and delivery of news and programming material. They are intended to recognize new ways of doing documentaries, broadcast journalism and entertainment, from new approaches to traditional broadcasts, to the use of new media (associated websites, interactivity etc.), to other creative and innovative means of practicing these crafts and presenting programming to the viewer.

In addition, Aptekar won a Bronze Remi Award for Creative Excellence at the 42nd Annual WorldFest-Houston International Film & Video Festival in April. Competing against more than 4,300 entries in the nation’s third oldest North American film festival, Aptekar’s film captured a film and video production award in the “Social/Economic Issues” category.

“The issues that we cover in the film are a matter of life and death for Texans with disabilities,” said Aptekar. “It’s important that we realize how a film can influence social policy as well as entertain.”

This is Evan White’s story: born with a rare chronic illness, Evan has reached the age of 21. He’s made it to adulthood thanks to the love of his parents and the care of nurses who come to his home each day.  But in Texas, once he’s an adult, his medical benefits end. Goodbye home nursing.

In her documentary short “Saving Evan White”, Houston filmmaker Karen Aptekar told the story of the crucial choices that Evan, his parents and hundreds of Texas families face when our medical system says: we’ll take care of you if you’re a child, but not if you’re an adult.

Karen Aptekar is a Canadian born independent Director/Producer living in Houston Texas. Prior to coming to Texas Karen worked for the advertising agency Wells Rich Greene in New York producing radio and television commercials as well as independently producing and directing documentary films.

Media Contact:

Karen Aptekar Productions
9822 Harwin Drive
Houston, Texas, 77036

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Update from Evan’s Mom

April 14th, 2009

Don’t forget to follow up on action needed!!! Faxes and phone calls to the senators are better than e-mails. Once the bill is read,it will be sent to committee and then we will need to be calling all the committee members. We need folks from all over Texas to do this as soon as possible. Don’t delay!!!
Thank you so much.


Saving Evan White SXSW Screenings

March 12th, 2009

Saving Evan White will be screened @ SXSW Reel Women Showcase:

The Hideout
617 Congress Avenue
Austin Texas, 78701

March 15, 2009, 2:00pm

March 26, 2009, 2:00pm

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March 11th, 2009

In Texas, young adults who qualify for Medicaid and have medically complex conditions, lose essential benefits when they turn 21.

A hospital level of care waiver needs approval in the 2009 legislative session. Please contact your state representative and state senator to encourage them to support the approval of the
Please click here to identify your state representative and state senator. Please follow the links to their respective websites and then to their individual e-mail accounts. Please let them know that you “support the hospital level of care waiver.”  Please tell your friend to help, too.

Want more information?  Please view the video, Saving Evan White by clicking on the Video link here. Thank you.

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Saving Evan White Accepted into SXSW Film

February 13th, 2009

‘Saving  Evan White’  has been accepted for screening by Reel Women and will be shown as part of the South by Southwest film festival in Austin,Texas in March.

Please stay tuned for showing times.

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Chava White’s Senate Finance Committee Testimonial

February 12th, 2009

Chava White, Evan’s mom, provided testimony to the Senate Finance committee on behalf of the ARC of Texas and Evan. (testimony below).  In addition to her testimony, committee members were given a copy of the video  Saving Evan White.


Chava White Testimony State Senate Finance Committee

My name is Chava White; I live in Houston Texas with my husband Allen and my children, Evan (21) and Rachel (28) I planned to be here today to testify for your support the DADS Exceptional item to fund a Hospital Level of Care Waiver program. Unfortunately, I found out last night that the item was dropped from the agency’s exceptional item list. I chose to testify today to ask that you still consider appropriating additional funding for this program or a program so that I can continue to save my son. Evan’s life. I am here representing myself as well as The Arc of Texas.

I am very grateful for this opportunity to provide testimony.

My son, Evan, suffers from a rare genetic disorder, familial dysautonomia. This disorder affects the autonomic & sensory nervous systems—the parts of the anatomy that control the most essential aspects of living: blood pressure regulation, digestion, swallowing, and sensitivity to pain, heat, and cold. Evan’s body is like a building without a thermostat .The essence of Evan’s disability is a body which lacks ability to regulate itself.

Evan requires on going care and monitoring helping him maintain autonomic balance. His ‘daily routine’is provided on a ‘judgmental’ basis .This has been our challenge:  saving Evan’s life each and every day. His nurse is essentially his autonomic nervous system, with ongoing  interventions & specially designed protocols and doctor’s orders inclusive of narcotic medication administration. This care has minimized Evan’s need for very expensive visits to the hospital. Even in the hospital; his nurse is an essential part of the care team.

This level of care it has made it possible for Evan to have an amazing quality of life. Evan can live at   home with us and is engaged as a member of our community. He goes to school, he participates in community and recreational activities.It is because of this intense and thorough care that Evan has not only survived, but he is thriving! He has been   able to enjoy an optimal quality of life in the shadow of a life threatening and medically complex illness. Our family is able to be a family. Wait till you see the video “Saving Evan’s Life”

Evan was qualified for the MDCP waiver program when he was 4. He was able to have all his needs met by this program. In 1997, changes in the MDCP program created a void in Evan’s access to the nursing care. With the help of Advocacy, Incorporated and Representative Scott Hochberg, Evan was able to access the CCP program which provided him with the nursing services he needs and that were missing in the MDCP program. I placed him on the CLASS and the HCS waiting lists so that he would have more options when he turned 21.

In 2006, Evan was offered a slot on both the CLASS and the HCS Medicaid waiver programs. I took great care to examine the 3 Medicaid waiver programs he qualified for. To my great disappointment, I discovered that there is no program available in our great state that will be able to meet Evan’s care needs once he was 21. I had to choose. I chose the CLASS program. The  CLASS program supports Evan’s community integration. The CCP program has continued to cover Evan’s complex medical needs.

Evan turned 21 in November. Evan’s care needs  exceeds the funding cap in CLASS.  An application for GR funding that is a part of rider 45, was made. I received a letter from DADS on Monday indicating that the request is denied because according to them Evan can have his needs met in a nursing home or state school. On Tuesday, I received a CLASS decision that essential  life saving supplements are not covered .

At this time, our CCP extension is good to March 31st.

Our lives are now on ‘stand-by’.

Senators, I am beside myself. How is it that our great state has been providing for Evan’s care until now but there is not a program in place to continue to do so? My husband and I have worked very hard to care for our dear sweet Evan, not just to keep him alive, but to live a life of dignity, productivity and of quality. We are completely dedicated to his needs and we want to continue to care for Evan as long as we can.

I urge you, please support/create/ a way to care for continuing  for our developmentally disabled and medically complex   children aging out of other services. This is a critical need and it will be a small program.

Don’t abandon my Evan and others whose lives you have been saving.

I thank you for your serious consideration for continuation of this life saving care.

Evan, our family, the other young adults facing this challenge are depending on your support.

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Update: Rider 45 Funding Request Denied

February 9th, 2009

Evan White’s mother receives a letter from the Department of Aging and Disabilities  denying request for Rider 45 funding  which would provide for the needed funding to meet Evan’s care needs.

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'EVAN' © 2009 Janice Rubin
Copyright 2009 Karen Aptekar Productions