Alaska News

Email accident violates privacy of thousands of Hope Community clients

Families and caregivers connected to Alaska's disabled are speaking out after the inadvertent release of private, personal and sensitive identity and healthcare information was blasted out in an email chain on Monday night. Some are just angry that an attachment with personal information was accidentally added to a survey solicitation for Hope Community Resources of Alaska. Others are worried the release of sensitive and valuable personal information -- like name, date-of-birth, next of kin and contact information -- could potentially lead to discrimination against the disabled.

Officials speaking on behalf of Hope confirmed the data breach on Tuesday. The Alaska Department of Health and Social Services said it is investigating the information release.

The email was intended to promote a survey of Hope Community Resources (HCR) clients and stakeholders; it included attachments with confidential information for all of the 3,700 disabled clients that contract with Hope, a statewide network of social workers and volunteers devoted to empowering Alaska's disabled individuals and families.

Recipients of the email included state workers and others who assist the disabled.

Names, dates of birth, guardians and parents, addresses and other private, identifying information for each of Hope's clients was accidentally dispersed in the email that was supposed to collect survey data toward a state health accreditation. In a twist of fate, the survey asked clientele of their experience with Hope's handling of sensitive healthcare-related and personal information.

Many on the list are minors, including some who are in the custody of the Office of Children's Services, or being helped by the Office of Public Advocacy.

The email was in support of an accreditation that Hope must achieve by June 2015, or else risk losing state funding. It wasn't immediately clear if the data breach would affect the accreditation process for Hope.

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A complaint to the federal Department of Health and Human Services could impact Hope's finances: violating patient privacy laws (HIPPA) can cost between $1,000-$50,000 per infraction. If each name is considered a single violation, the total cost in dollars for the accidental email could reach $1.5 million.

Vulnerable Alaskans exposed

Several people on the list contacted Alaska Dispatch, extremely upset that such sensitive information as the identification of children and disabled individuals -- valuable to identity thieves or worse -- was exposed so easily.

Alaska Dispatch is protecting the identities of those who reached out to share their experience. "James," a young Alaskan affected with autism, is among those whose identity and health care information were made public in the email blast.

James is in his early twenties and has found it difficult to transition from high school into adulthood. He is "highly functioning" -- a term given to people who suffer a less debilitating, less isolating autism experience. In fact, James might not be identified as autistic by you or me.

Hang around James and observe his mannerisms, his response to stressors, and with knowledge of autism spectral disorder you may connect his tendencies to it.

"I am concerned how the release of information might affect him," his mother said on Tuesday. "He is trying to get a job, and I worry that if his name is shown on a list of disabled people, it could prevent him from being hired."

James does not yet know about the release, she said, adding that he'll probably be angry about it when he finds out.

There are more than 3,500 others like James and his family who may feel some anxiety over the accident. Living with a disability brings vulnerability for the individuals and their families; revealing a condition to others often comes after a long process and with counseling. Many of the people whose information was inadvertently released in the Hope email may now have to cope with new anxieties that exposure can bring.

Correcting the mistake and resuming support

Hope Community Resources officials, many of whom have devoted their careers to helping the disabled navigate these obstacles, were concerned and acknowledged their mistake. The agency said Tuesday it's reviewing how the information came to be attached to a survey.

Hope was informed of the email accident on Monday night and immediately tried to recall the email prior to its delivery. Those on the email chain who'd already received and opened the email were asked to delete it.

"We plan to notify everyone involved and will be sending out an apology letter to everyone who had their personal information disclosed in the attachment," said HCR chief of staff Tonya Rambow.

Despite the mistake, Hope Community Resources is of immense help, say clients. The family of James will continue to rely on Hope in the future, despite the exposure.

"I think they are a good agency, and do good work. I mean, things can happen, and while I can't understand how someone could add the list of information to the email, I understand that mistakes can be made. I don't hold a grudge against them. In the end, it is up to the caregiver to make sure that the best resources are being used for a client," said the mother of James.

"I guess the big thing is that when people do find out, they should be less judgmental about a person's disability or condition, because many of them can do an amazing amount of things, if given the chance."

Contact Sean Doogan at sean(at)alaskadispatch.com

Sean Doogan

Sean Doogan is a former reporter for Alaska Dispatch and Alaska Dispatch News.

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