Contact Alabama media and officials re: Lauren Rainey

Lauren Rainey wins!

This 13-year-old middle-school student had been in danger of having her nursing care terminated. Now Medicaid has changed its policies for the better. Read details here.

Updates posted on this page as they become available.

UPDATE:I learned today from the good folks at MichaelMoore.com that the case of young Lauren Rainey, the trach-dependent Alabama child whose nursing care has been in danger of termination, has taken a turn for the better. Medicaid officials have launched a ninety-day review of its nursing care policy. A positive resolution would benefit not only Lauren but other children in the program. Bruce Mildwurf, the WPMI (NBC 15, Mobile) reporter whose work brought this story to national attention, has done a story covering the new developments. The story as it was aired can be viewed online as well; the video link is posted on the story page. (I recommend Internet Explorer 5 and up for viewing the piece.)

Special Report: A Medicaid policy under review - Lauren Rainey and other children wait in the wings

A 13 year-old Mobile girl is taking on the system. Her battle grabbed headlines nationwide when Medicaid threatened to drastically reduce Lauren Rainey’s nursing care. Now Medicaid is taking another look at its policy. [...]

Our first story on Lauren’s case aired last November.

“Nicely done. I think it lays out the issues pretty clearly.” said James Tucker, the lead attorney with ADAP - The Alabama Disabilities Advocacy Program. “Clearly the story has garnered a great deal of attention within the state and nationwide.” said Tucker.

Since the initial story aired, Tucker and a team of ADAP lawyers have agreed to represent Lauren in her fight against Medicaid. “We’ve taken a look at the legal questions and are willing to go to bat for Lauren.” said Tucker. [...]

Tucker says Medicaid is changing their tune. “We’ve been very encouraged that Medicaid has responded in what we feel is a more appropriate fashion since the story ran and since we entered the case on behalf of Lauren and her mother.”

He is encouraged because Medicaid is undergoing a 90 day review of its policy. Tucker said, “They’re undertaking a review of the regulations regarding Lauren’s case. And that same regulation affects other children and their families.”

In a written statement, a Medicaid official stated: “During the period of review, Medicaid has issued a stay on the number of nursing hours available to all children in the program.”

“This is not something Medicaid does routinely and I’m hoping for a good outcome.” said Tucker.

In the meantime Lauren’s mother is, “Waiting on pins and needles just sitting and waiting hoping and praying.” Hoping and praying that Lauren, with her small frame, big smile and even bigger spirit will receive the level of nursing care her doctor says is necessary for her to live and breathe.

Medicaid has not given an official date as to when the 90 day review period is up. But Lauren’s lawyers say it will be within the next few weeks.

James Tucker tells NBC 15 if the outcome does not provide Lauren with at least the level of nursing hours she is currently receiving, they are prepared to sue the state.

The new story provides an excellent recap of the events in Lauren’s story in additon to the new developments. I reiterate that it’s well worth watching the video of the piece as it was aired to really grasp the full import of the story. Lauren and her mom are real people in a bad spot, and you better understand that through watching the video than simply reading the story, I think.

Mildwurf and NBC 15 will continue to cover the story as new events unfold.

While a resolution for Lauren is not yet at hand, it can only be encouraging that Medicaid has moved to review its policy. Everyone who has ever sent an email or letter or called on Lauren’s behalf is to be commended for their concern; I ask that you continue to stay watchful. I’ll be posting on this matter as events warrant.

UPDATE: A thoughtful response to the Carol Herrmann letter described just below - from a registered nurse named Jennifer - is posted here.

UPDATE: Carol A. Herrmann, commissioner of the Alabama Medicaid Agency, sent out a mass email response to people who have written the agency regarding young Lauren Rainey and the threat to her nursing care. Like previous responses from AL Medicaid, it dodges the central issue: the impending termination of Lauren’s nursing care. In addition - as in previous AL Medicaid replies - it engages in misinformation about the media reports that brought Lauren’s case to public attention. The salient portion of Herrmann’s email (emphases mine):

A recent report on television unfortunately indicated that an Alabama child was being terminated from Medicaid. I can assure you this is not the case. Medicaid provides a comprehensive range of services to all eligible children, and can provide these services to the child mentioned in the report.

These benefits include:

1. Screening services to find children with actual or potential health problems and to screen, diagnose, and treat the problems
2. Physician visits
3. Dental and vision services
4. Lab and x-rays
5. Pharmacy benefits
6. Hospital services
7. Private duty nursing services
8. Mental health services
9. Supplies, appliances and durable medical equipment such as test
   strips, ventilators, monitors, and wheelchairs
10. Therapy services
11. Nursing facility care

In addition to these services, other benefits are available through cooperative programs between Medicaid, Department of Public Health, Department of Mental Health/Mental Retardation, Department of Rehabilitation Services, Department of Senior Services, and Department of Education. These services include:

1. Nursing services - skilled nursing and related services to assist children in attending public school
2. Respite care- services designed to offer relief to the caregivers normally providing care, to include trained oral suctioning and medication management
3. Case management - services that provide assistance with locating, coordinating and monitoring services
4. Homemaker services - services that provide assistance with general household activities that include meal preparation, food shopping, routine cleaning, and personal services

Again, thank you for your concern.

Commissioner Herrmann has set up a straw man argument. At no time did either of the special reports (from November 9 and December 3) by WPMI (NBC 15, Mobile) claim that Lauren Rainey was “losing her Medicaid.” For AL Medicaid to state otherwise is disingenous and a blatant attempt to distract concerned people from Medicaid’s threatened termination of Lauren’s nursing care. Her eligibility for this care, glossed over in Herrmann’s response, is the issue here; the agency has determined that she is no longer eligible because, to quote the first news report, “Medicaid only provides nursing care for patients whose condition is clearly worsening.”

In response to that, Lauren’s physician - Dr. Lawrence Sindel - had this to say:

“Clearly the people that made the decision don’t understand what’s going on with Lauren or they decided taking care of her is not worthwhile.”

A brief recap of what’s going on with Lauren:

“She’s a happy child,” her mother, Laura, tells NBC 15 News. Her size is more like that of a 3 year old. But that’s the least of her medical concerns.

“She’s got the trache, she’s deaf, she’s got asthma, got an enlarged heart, all types of bone problems, scoliosis,” said her mother.

To help her breathe, Lauren is hooked up to an oxygen machine and a humidifing mist machine. Lauren’s doctor said her airway is restricted to the size of the end of an ink pen.

“That’s why she is constantly suctioned. She is always getting plugged up,” added Laura. Lauren’s airway is suctioned several times an hour to prevent her from suffocating.

Due to her medical condition, Lauren requires 24-hour a day supervision. Medicaid currently provides her a trained nurse for 10 hours a day. But a recent letter from Alabama Medicaid says a decision has been made to eliminate Lauren’s care.

The laundry list of services detailed in the Herrmann email amount to a smoke screen, thrown up as a distraction. The issue is not how many X-ray sessions Lauren is still entitled to, but the level of nursing care Lauren will no longer receive if Medicaid goes through with its plan. From the second WPMI report:

For the last nine years, Alabama Medicaid has provided 13 year old Lauren Rainey with at least 10 hours a day of nursing care. Her mother, Laura Gordon said, “It started off with 24 hours and then they cut it down several times down to ten. We’ve had ten (hours) for a few years.” [...]

After NBC15’s second report on Lauren, Medicaid sent the family more information. The information mentions that Lauren qualifies for 12 hours a week of nursing care - a drastic reduction from the current level of 70 hours a week.

“That’s not enough help. I need to go to work in order to take care of her. 12 hours a week is not gonna do it all.” said Mrs. Gordon.

Commissioner Herrmann’s email represents yet another failure by AL Medicaid to address the threat to Lauren’s welfare - and yet another attempt to distract people from the facts of Lauren’s case.

Don’t be fooled.

UPDATE: I’ve discovered that emails about Lauren Rainey are no longer bouncing back when addressed to the seven Medicaid officials listed below. I encourage eveyone to use the individual email links, or the convenient “one-click” link to send messages to all seven officials at once. I can’t say what happens to the emails once received; as they were rejected earlier, it’s possible that some other filtering is taking place, but it is important to try. I’d welcome any word of responses you may receive from any of these officials.

I also ask that you send real letters to their offices in addition to email. The addresses are provided below.

UPDATE: George Bush has nominated Environmental Protection Agency chief Michael Leavitt to be secretary of Health and Human Services. This leaves Dr. Mark McClellan in charge of Medicaid, and he should still be contacted regarding Lauren…but perhaps Mr. Leavitt should be contacted as well. More on this later.

Administrator: Mark B. McClellan, M.D., Ph.D.
phone: 410-786-3151
Centers for Medicare & Medicaid Services
7500 Security Blvd.
Mail Stop C5-11-24
Baltimore, Maryland 21244-1850

Deputy Administrator: Leslie V. Norwalk, Esq.
phone: 410-786-3151
Centers for Medicare & Medicaid Services
7500 Security Blvd.
Mail Stop C5-11-24
Baltimore, Maryland 21244-1850

Office of External Affairs (OED) Director: Kathleen Harrington
phone: 202-690-6145
Office of External Affairs
Centers for Medicare and Medicaid Services
Department of Health and Human Services
200 Independence Avenue, SW
Mail Stop 303D-01
Washington, D.C. 20201

OED Acting Deputy Director: Winifred Pizzano
phone: 202-260-2357
Office of External Affairs
Centers for Medicare and Medicaid Services
Department of Health and Human Services
200 Independence Avenue, SW
Mail Stop 303-D HHH
Washington, D.C. 20201

Center for Medicaid & State Operations (CMSO) Director: Dennis G. Smith
phone: 410-786-3870
Center for Medicaid & State Operations
Centers for Medicare & Medicaid Services
7500 Security Blvd.
Mail Stop S2-26-12
Baltimore, Maryland 21244-1850

CMSO Acting Deputy Director: Carmen Maria Keller
phone: 410-786-3031
Center for Medicaid & State Operations
Centers for Medicare & Medicaid Services
7500 Security Blvd.
Mail Stop C5-14-15
Baltimore, Maryland 21244-1850

CMS Atlanta Regional Administrator: Rose Crum-Johnson
phone: 404-562-7150
Centers for Medicare & Medicaid Services
Region 4
Atlanta Federal Center
61 Forsyth Street, South West
Suite 4T20
Atlanta, GA 30303-8909

Here is the text of my own email to Dr. McClellan that was blocked earlier.

To try emailing all seven officials at once, click here.

Please - please - be polite in your communications.

I repeat here the names of elected officials and their contact information. Again, I place special emphasis on the importance of contacting Governor Bob Riley.

Contact form for Alabama Governor Bob Riley

Riley: Mail
The Honorable Bob Riley
State Capitol Montgomery
600 Dexter Avenue
Montgomery, Alabama 36130

Riley: Phone and Fax
Switchboard: 334-242-7100
Fax: 334-353-0004

Email for Senator Richard C. Shelby

Shelby: Mail
The Honorable Richard Shelby
United States Senate
110 Hart Senate Office Building
Washington, DC 20510

Riley: Phone and Fax
Telephone: 202-224-5744
Fax: 202-224-3416

Contact form for Senator Jeff Sessions (bottom of page)

Sessions: Mail
The Honorable Jeff Sessions
United States Senate
335 Russell Senate Office Building
Washington, D.C. 20510-0104

Sessions: Phone and Fax
Phone: 202-224-4124
Fax: 202-224-3149

Representative Jo Bonner (of Lauren’s home town, Mobile) does not accept email from anyone outside of his district, but can be contacted via regular mail, phone, and fax just like any other citizen. I urge everyone to make use of this info:

Bonner: Washington Office
The Honorable Jo Bonner
United States House of Representatives
315 Cannon House Office Building
Washington, DC 20515

Bonner: Washington Phone and Fax
Phone: 202-225-4931
Fax: 202-225-0562

Bonner: Mobile Office
The Honorable Jo Bonner
1141 Montlimar Drive, Suite 3010
Mobile, AL 36609

Bonner: Mobile Phone and Fax
Phone: 251-690-2811 or 1-800-288-8721
Fax: 251-342-0404

As you contact these Medicaid and elected officials, please make time to express your concern for Lauren to the Alabama media as well. The full list is located further down this page, but here is a quick one-click for most of the media outlets in Alabama’s four largest cities.

I believe and hope that sustained public attention will help guide these officials to a more compassionate decision for Lauren Rainey’s health and welfare - compassion worthy of this holiday season. Please do what you can to help. And, again, tell everyone you know.

From an older post: The story of 13-year-old Lauren Rainey, the trach dependent patient whose nursing care will be cut off by Alabama Medicaid (at risk to her life, according to Lauren’s doctor), has traveled all over the blogosphere. It has now been picked up by MSNBC.

It’s vitally important to reach out to Alabama citizens and officials through the media as well. A child’s life is at stake, and Alabama Medicaid must understand that and make a decision for compassion. I have compiled a list of newspapers and television stations with news departments in the four largest cities in Alabama: Birmingham, Montgomery (the state capital), Mobile (home of WPMI, which broke the story), and Huntsville. Please take time to register your concern for Lauren with these media outlets, and please share this list with others. I’d be grateful for any corrections necessary.

Birmingham media

Birmingham News
Contact form

Birmingham Post Herald
Email (Karl Seitz, editorial page editor)

Birmingham Times
Email

WBMA
Contact form

WBRC
Email (Mike McClain, VP/News Director)

WIAT
Email

WVTM
Contact form

Montgomery media

Montgomery Advertiser
Contact form

Montgomery Independent
Email

WAKA
Email (Mike Smith, South Alabama WAKA Newsroom)

WSFA
Email (Denise Vickers, news director)

Mobile media

Mobile Register
Email

WKRG
Email

WPMI
Email (News Room)
WPMI’s Bruce Mildwurf (who did the initial special report on Lauren, and who deserves a word of thanks)
Email

Huntsville media

Huntsville Times
Email

Speaking Out News
Email

Valley Planet
Email

WAAY
Email

WAFF
Email (Tracey Gallien-Rogers, news director)

WHNT
Email (Kevin Osgood, news director)

WZDX
Email (Al Carl, news director)

UPDATE: I have compiled all of the email addreses above into a single mailto link for your convenience. Media outlets with contact forms instead of email addresses must still be contacted individually. Please let me know if the link gives you any problems.

UPDATE: If you have contacted Dr. Mary McIntyre of Alabama Medicaid regarding Lauren Rainey’s case, I’d be interested in seeing any responses you may receive from her or from her office. When you forward her message to me here at Waveflux, please be sure to include her message’s full Internet header. Thanks.

UPDATE: I have posted a look at a less-than-responsive response from Alabama Medicaid.

UPDATE: Alabama Governor Bob Riley engages in defensive rhetoric, parroting the AL Medicaid line of unspecified “other options” for Lauren while characterizing media reports of Lauren’s case as scare tactics. The governor must hear from people concerned for Lauren’s welfare. See above for contact info.

Also, WMPI (NBC 15, Mobile, which broke Lauren’s story) has posted a follow-up piece worth reading.

UPDATE: Please make time to contact Senators Richard C. Shelby and Jeff Sessions. Contact info listed above.

UPDATE: What “other options” are available to Lauren from Alabama Medicaid in the absence of her PDN care?

“Lauren’s mom did check with Medicaid about those other programs. She said Lauren who currently gets 70 hours a week of nursing care would qualify for 12 hours of care a week. Or she could instead choose to have house cleaning services, “And the girl comes in 3 hours twice a week and that’s not helping me. I don’t need a housekeeper I need a nurse there that can take care of her.” said Lauren’s mother.”

Click here for more.

HELP NEEDED: I have a favor to ask. It was easy to identify the two senators from Alabama and post their addresses for contact on Lauren Rainey’s behalf. Because I do not know what political district her family lives in, I can’t name her representatives in Congress or her state legislators. Can someone get me this information? If so, please contact me here. It would be much appreciated.

UPDATE: Addresses and contact numbers for Representative Jo Bonner of Alabama’s 1st District posted above.

NOTE: I would very much like to thank everyone who has visited this website for information on young Lauren Rainey’s struggles with Alabama Medicaid and has gone on to write emails or letters or place phone calls on Lauren’s behalf. While there are a number of people who deserve particular thanks for bringing attention to this story (and they’ll get it), I’d like to make special mention just now of David and everyone connected with MichaelMoore.com.

I ask that everyone be polite when contacting any official in this matter, including anyone connected with Alabama Medicaid. I understand that feelings may run high regarding Lauren’s situation, but name-calling and threats will not help matters. And helping matters, helping Lauren, is what counts.

Thank you again. Please keep at it. And tell everyone you know.

NOTE: I’d like to wish a happy Thanksgiving Day to young trach-dependent patient Lauren Rainey of Mobile, Alabama, whose struggles for continued nursing care have been well-documented.

I would also like to wish a happy Thanksgiving Day to Dr. Mary McIntyre, the director of Alabama Medicaid, the organization whose every decision directly affects Lauren’s continued health and welfare.

The holiday season is a time when the fundamentals of our common humanity become more celebrated and more cherished. I hope - I wish - that those charged with protecting Lauren’s health act with compassion, in the name of the humanity we share.

NOTE: The Birmingham Post-Herald was kind enough to publish my letter to that paper’s editor regarding Lauren’s situation; two other letters were published at the time, one from Springfield, VA and the other from Chicago.

UPDATE: WPMI has released a new follow-up story on Lauren.