Karen Ocamb

What Hospital Visitation Rights Heroine Janice Langbehn Won't Tell Obama Tonight - She's in Pain and Financial Trouble

Filed By Karen Ocamb | June 22, 2010 5:00 PM | comments

Filed in: Living, Politics
Tags: Janice Langbehn, Obama and LGBT rights, Rosie O'Donnell

Janice Langbehn, the accidental activist most responsible for securing hospital visitation rights for LGBT families, will be a guest at the White House Pride event, which begins one hour from now. Janice welcome aboard

The White House is expected to webcast the reception live at 6:00pm Eastern, 3:00PM Pacific.

Lambda Legal represented Langbehn last September in a federal lawsuit against Jackson Memorial Hospital, which had refused to allow Langbehn to see her dying partner, Lisa Pond, until a priest was admitted for last rites.

The lawsuit was rejected by a federal court in Florida because there is no law requiring hospital visitation rights for gay people and their families. (This photo was taken of the whole family just before they boarded the R Family Cruise on the day Pond was suddenly stricken fatally ill.)

White House Chief of Staff Rahm Emanuel read about Langbehn's story and brought it to President Obama, who signed a memo in April directing the Secretary of Health and Human Services to issue regulations to allow hospital visitation rights for LGBT families. Obama personally called Langbehn to say he was sorry for what happened to her. The HHS regulations are due to be published on June 25th.

But Langbehn is a proud woman and will probably not tell Obama or anyone else that she suffers from MS, is in constant pain from back surgery and other ailments, and is in financial trouble because she no longer has two incomes to help pay for her medical care and to take care of the couple's three teenagers.  Her current situation underscores how important federal benefits such as Social Security are.

Langbehn discussed her situation with me for Frontiers as I followed up on a Human Rights Campaign initiative about rating hospitals. She has a fund set up on her website - but it has not been publicized.  Hopefully, members of the LGBT community can express their gratitude for her work getting hospital visitation rights by stopping by her website and making a contribution.

Here's the story on Langbehn's situation, as reported in Frontiers In LA:

Hospital Visitation Rights Heroine Janice Langbehn in Financial Trouble

Three years ago, the world heard the terrible story of how Janice Langbehn was prevented from seeing her partner of 20 years, Lisa Pond, as Lisa lay dying from a sudden brain aneurysm in the emergency room at Jackson Memorial Hospital in Florida. Last April, President Obama called Langbehn to apologize and tell her he was signing a memorandum requiring all hospitals that receive federal Medicare and Medicaid funding - nearly every hospital in America - to protect the visitation and healthcare decision-making rights of LGBT people.

On June 7, the Human Rights Campaign Foundation released its Healthcare Equality Index report, dedicated to Lisa Pond's memory and Langbehn advocacy for hospital visitation rights. "Thanks to the tireless work of Langbehn and other advocates for health equality, this year [Jackson Memorial Hospital] updated its policies to protect the rights of LGBT patients and their families.

The hospital has not yet apologized, however, Langbehn told Frontiers In LA, noting "their inability to just be human about it and just say they're sorry. But that's great that they have changed their polices. That's what I ultimately wanted so that the next couple that comes through there doesn't have to deal with the ordeal and the pain and the guilt that I've had to deal with for all these years."

But what the LGBT community does not know is that this gracious advocate for equality has Multiple Sclerosis and is struggling with financial hardship.

"Lisa used to be my caregiver when I was ill," Langbehn said. "I was able to pretty much work fulltime up until her death and then when I got ill, I had no one to care for me. After she passed away, whenever I'd have an MS flare and I'd get ill, I'd have to go into the hospital. And then I'd have to find care for the kids because I didn't want them to go into foster care. And then I would lose wages - and this happened with more and more frequency, culminating in my having to have a disc removed from my back and having to have brain surgery - all after she died.

It just drained me financially," she continues.  "I was disability-separated from my state job - I had been a Child Protective Services supervisor for the state of Washington for 16 years - because I could no longer perform the functions due to my MS. Pretty much we had a meeting on Friday and they let me go on Monday in August of 2008. I applied for Social Security right away. I went from making a middle-wage income to making 150% below the poverty line. And I still have three kids to raise. 

"The biggest chunk is having to pay my medical premiums, which were covered when I was working. When I was separated, I had to pay for it myself so $900 of my $1800 Social Security went to just keeping my medical going. And that's not to mention the kids, paying the mortgage on the house, the car payment, all their activities. They're every busy kids - that's one thing Lisa really instill in them and I wasn't about to take that away."

Pond's parents had promised to help Langbehn pay for the children's schools but have not even responded to an embarrassed request for a loan. "Pre-Lisa and Post-Lisa are two different sets of grandparents, sadly," Langbehn said.

Janice and kidsThis is no small matter. The kids are foster/adopted kids with developmental delays. On Feb. 18, 2007, at ages 9, 11 and 12, they saw their 39-year old mother Lisa unexpectedly collapse aboard the Rosie O'Donnell Family Cruise ship - a trip Langbehn bought as a surprise to celebrate the couple's 15th Holy Union anniversary. The kids literally helped carry Pond to the medical facility aboard ship before she was taken to the hospital.

"Lisa's eyes were somewhat open as they were putting her into the ambulance," Langbehn recalled. "We knew sign language because of the foster kids. She held up her good hand and signed 'I love you' to the kids and me - and that was the last time I saw her eyes open." And it was the last time the kids saw their mom, too, since the hospital wouldn't let them back to say goodbye either.

Langbehn's suffering isn't over. "The brain surgery that I had for nerve condition related to the MS wasn't successful so I'm facing another brain surgery," she said. "I'm putting it off as long as I can because they're going to have to cut a facial nerve to stop the pain. The back surgery was, for the most part successful, but now I have just arthritic degeneration so I need to go in for epidural injections - which I haven't done yet. I'm too scared to do it."

On her blog - http://thelpkids.com - Langbehn asks for donations to Lambda Legal, which helped her after Pond's death. But "it's "too hard" asking for money for herself and the kids, she said. She hasn't even asked her MCC church.  The MS Society has helped with a hearing aide and childcare when she was in the hospital for a week.

"I don't want people to take pity on our family. Lisa and I just always kind of dealt with it, said Langbehn, the accidental activist who helped changed the lives of thousands of LGBT people.

But showing gratitude is not showing pity. If you want to help, the Memorial Fund is: http://thelpkids.com/childrens-memorialeducational-fund/

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Hey Janice Langbhen - If you are formally on disability and receiving social security, you and your dependent children should be eligible for Medicare coverage (even before age 65). This would be at a rate much less than the $900 month mentioned here. You may also be eligible for Medicaid depending on your income level. Check with Social Services in your state for both of these.