Father fights delay in disability payments: Terminally ill daughter died …

FARMINGTON — Herbert Russell spends much of his time in one room of his house. The walls feature paintings of wildlife, and the shelves are full of butterfly figurines and pictures of his daughter, Heather.

Russell goes to that room to remember his daughter and the battle she fought with both cancer and the Social Security Administration — a battle that he continues fighting today.

Heather Russell was diagnosed with stage IV small cell lung cancer, a cancer that eventually spread to her brain, neck, pelvis, and adrenal gland, in May of 2009. Heather continued working at Home Depot, her father said, until October 2009, when her doctors finally told her she had to stop.

Heather’s fight with Social Security began around the same time as her fight against cancer — her first application for disability insurance came back denied, saying she had done the paperwork incorrectly. Later, she was told that she was earning too much to qualify for assistance.

Heather was finally approved for benefits in November 2009, about a month after her doctor told her she had to stop working. There was one catch, however — Heather still had to wait the mandatory five-month waiting period in effect to get her benefits.

For Heather, that five months was too long — she died in late April 2010, just weeks before she was due to receive her first disability payment.

Today, her father said he is still doing all that he can to remove that five month waiting period for the terminally ill, and fight against what he views as the red tape surrounding disability benefits.

Russell is just one of many people who are hoping for the same change, and believe there is too much red tape for the terminally ill to wade through when applying for disability benefits.

According to Social Security Deputy Director of Regional Communications Stephen Richardson, the five-month waiting period after an individual is approved for benefits was established to ensure that Social Security is only paying out benefits to people with long-term disabilities and that they are not duplicating benefits one may be earning from an employee pay plan.

Richardson said that while he could not comment on Social Security’s position on whether this period should apply to the terminally ill, saying it is a federal statute, he said the administration understands the potential struggles it creates.

“We are sensitive to the potential hardships the five-month waiting period may cause terminally ill patients and their families,” he said, adding that Social Security has no power to change the policy.

There have been a few attempts to remove the five-month waiting period for the terminally ill by U.S. senators and representatives, but so far, none has succeeded.

In 2009, Sen. Jeanne Shaheen and another senator teamed up to create a bill that aimed to end the five-month waiting period for applicants with life threatening diseases.

That bill, the Social Security Fairness for the Terminally Ill Act of 2009, was not passed before the session of Congress in which it was proposed ended.

Today there is a new bill in the House of Representatives — the Social Security Fairness for the Terminally Ill Act of 2011 — that aims to do the same thing. The bill is currently under legislative review.

The bill will help those like Heather, whose father said would have had increased quality of life and fewer worries with a shorter waiting period. But New Hampshire disability lawyer Janine Grawl said the bill is not the only answer.

There are other ways, she said, to shorten the time it takes for the terminally ill to receive benefits. Unfortunately, she added, these ways often come with their own sets of hurdles.

Grawl said that patients who are identified as being terminally ill can be classified as a “Critical Case,” and can receive an expedited processing of their claims.

According to Social Security, once a patient’s case is classified as critical, all processing steps are done as fast as possible.

Grawl said people with severe illnesses also can be covered by a “Compassionate Allowance” if they have one of about 88 predetermined conditions, and classified as a critical case and have their claims expedited.

Richardson said that while compassionate allowances were established in October 2008 and that while they do help to expedite the application process, they do not remove the five-month waiting period.

Heather’s small cell lung cancer qualified for the compassionate allowance, her father said recently, but that fact was something the family did not know for months while struggling to get Heather Social Security. In fact, it wasn’t until shortly before Heather’s death in April 2010 that the family learned of the expedited processing after seeking help from the staff of then-Congresswoman Carol Shea-Porter’s Dover office.

Russell said it angered him to discover that his daughter could have received benefits much earlier than she did, and said that while all the Social Security representatives that he worked with knew what Heather’s condition was, none of them suggested that she could qualify for a compassionate allowance.

“If you don’t know the right questions to ask, they are not going to tell you the answer,” Herbert said recently.

Grawl said this issue is often true for her clients as well, and said that while many people call the main Social Security phone number to try to get their questions answered, they would be better off going to a regional office.

“A lot of people try to do things by telephone using an 800 number and think they are being helped but they’re not,” Grawl said. “Calling the SSA gets people nowhere … the people at the other end have no investment in giving people detailed information.”

Richardson, however, said Social Security prides itself on its customer service and that while someone could speak with a regional representative, the 800 number is one of the administration’s “excellent service delivery options.”

According to Grawl, even patients who are able to get correct and useful information and qualify as a terminal case or are covered under a compassionate allowance can still face many road blocks when trying to get their claims expedited.

One of the biggest issues that slows down the claims process, she said, is the need for medical records. Social Security requires medical records be examined by a medical consultant before approving an applicant’s claims.

Grawl said that releasing a patient’s medical records, whether they are requested by Social Security or by the patient themselves, is often not a top priority for medical offices, and that when they are released there are often high costs associated.

These high costs, she said, create a Catch-22 for the patient involved.

“When people apply for disability benefits they typically aren’t working, so they don’t have the money to pay for the records,” she said, adding that at the same time, they can’t get money without the records.

Grawl said that while Massachusetts and a few other states have created laws that state a doctor cannot charge for a release of medical records if they are going to the SSA, New Hampshire does not have such a law, and doctors are permitted to charge up to $15 dollars per 30 pages. Even if a patient only needs one page from their records, she said, they can be charged $15.

One of her clients, Grawl said, was diagnosed with stage IV lung cancer nearly two months ago, and has still not received any medical records despite faxes, phone calls, and the client’s pleading.

Even worse, Grawl said, the oncology office her client visits wants to be paid a processing fee before sending out any of the records.

It is issues like these that Russell said he hopes to eventually change.

While it is too late for these changes to help his daughter, he said there are others in similar positions who need help, and that his daughter would have wanted him to keep fighting.

Before her death, Heather told Foster’s that she hoped legislation would change, making it easier for others to get the benefits they need.

“I wouldn’t want to see anyone else with terminal cancer wait for five months while they’re dying,” she said.

Her father has continued to write, call, and talk to as many politicians as he can about the importance of removing the waiting period for the terminally ill.

Politicians in N.H. are also talking about Social Security as of late. According to a story from The Associated Press, lawmakers’ efforts to make a state budget revision aimed at reducing welfare spending would cut welfare benefits to people who also get federal SSI checks.

The budget fix, which would save the state $8 million a year, stalled after the House sent a bill that would take the budget fix back to the Senate, which is not planning on meeting in session for the rest of this year.

This wait has already cost the state $2 million and could cost another $2 million if the fix is delayed until the Senate’s January session, according to The Associated Press.

Herbert is used to waiting for change regarding Social Security.

As he waits, Herbert takes comfort in sitting in the room where his daughter stayed while at her sickest, looking at pictures of her and remembering the life that was taken from them all too soon.