Access to disability benefits to improve thanks to updated Huntington disease criteria

Monday, August 01, 2016


By Sean Thompson

Thanks to the efforts of many advocates in the Huntington disease community over several years, the Social Security Administration (SSA) will soon be considering the full picture when it comes to HD symptoms, a big step toward equitable decisions regarding benefit eligibility.

Previously, with regards to the eligibility criteria for Social Security Disability Insurance (SSDI) benefits, the SSA considered HD strictly a movement disorder, which ignores the cognitive and behavioral aspects of the disease. The addition of these previously overlooked symptoms to the SSA’s medical criteria describing HDcould lead to many more people with HD receiving much-needed disability benefits.

Angel Dominguez LMSW
Angel Dominguez

“For individuals who have HD but are experiencing more of the cognitive and behavioral symptoms, this will provide them the opportunity to apply for benefits,” said UI HDSA Center of Excellence Social Worker Angel Dominguez. “That’s why it’s exciting because as we know, HD can manifest in many forms and can impact people differently.”

According to the Huntington’s Disease Society of America, the new criteria will include the functional cognitive and mental symptoms of HD, including marked limitations in executive function, social interactions, concentration and self-control, as well as other behavioral and psychiatric symptoms. This will allow SSA staff to better evaluate someone with HD who doesn’t yet display the physical symptoms of the disease.

Jane Paulsen
Dr. Jane Paulsen
directorResearch findings from studies like the UI HDSA Center of Excellence’s PREDICT-HD have shown cognitive and behavioral changes are among the earliest HD symptoms, according to UI HDSA COE Co-director Dr. Jane Paulsen. These changes often begin up to 20 years before a traditional motor diagnosis of HD would occur. Furthermore, Paulsen says non-physical symptoms such as depression, inability to concentrate and apathy can be especially impactful to a person’s ability to continue working. SSA disability benefits provide financial assistance to people who are deemed unable to work due to their disease or condition.

“These changes will help families receive this assistance at a time when they need it the most,” Paulsen said, “when someone with HD may not be able to work years in advance of significant physical symptoms.”

When someone feels they can no longer work because of their HD symptoms, Dominguez says, they can apply for SSA disability benefits. First, the SSA has to agree they have significant disability or impairments because of their disease, which is where the updated criteria come into play, for those with non-physical HD symptoms. The new guidelines should get those people a foot in the door, Dominguez says, whereas previously the door would have been shut.

Simply put, the SSA then determines if their impairments do indeed inhibit their ability to work, and if so, they would be approved for financial assistance that would allow them to purchase medication, therapy, insurance copays or whatever their need might be, Dominguez said.

“People with HD will now be able to financially plan more effectively,” she said. “Those who are beginning to decrease the amount of work they are able to do can start thinking about when to apply for disability benefits, regardless of what type of HD symptoms they are experiencing.”

The new guidelines go into effect on Sept. 29, 2016. At that point, both applicants and social workers will begin to understand the full impact of the updates. Dominguez reminds HD families to approach applications under the new guidelines as pragmatically as possible, knowing a bumpy launch is possible.

“Anytime you are dealing with new definitions and staff who make these types of decisions about benefit eligibility, it’s going to take some time to see how exactly these changes will impact the individuals who are applying,” Dominguez said. “But there’s every reason to believe this will really make a difference for a significant number of people with HD, and their ability to receive benefits.”

All involved in this effort to have the SSA criteria updated credit the HD community for speaking up and remaining steadfast and optimistic. While this ruling accomplishes part of what the HD community hoped to see addressed with the federal HD Parity Act legislation, there is still a need to pass the second part of the act’s two-fold aim, which is to remove the two-year waiting period to receive Medicare benefits. But the impact of the HD community’s advocacy through sending in letters, attending hearings, contacting legislators and more was instrumental to make these changes happen.

“It’s a sign of how far the HD community has come and can continue to go to get all aspects of the HD Parity Act in place, and increase awareness of Huntington disease,” Dominguez said.

“We are grateful to the SSA for listening to the needs of HD families,” said Louise Vetter, CEO of HDSA, “and this rule is a reminder of the incredible impact we can have when we work together as a community to remove barriers and demand access to care for our loved ones.”