After A Social Safety Setback, Hdsa Steps Upwardly Advocacy On Huntington’S Disability Criteria

The Huntington’s Disease Society of America (HDSA) is calling on the hard disk community as well as its supporters to urge the Social Security Administration (SSA) to update as well as expand its listing (description) of the disorder as well as so that patients suffering from all types of symptoms tin qualify for disability benefits.

Listings are medical criteria for evaluating disability claims involving diseases as well as disorders equally determined inwards the Social Security Act. Written decades ago, the electrical flow SSA listing for hard disk mentions only the motor symptoms, the involuntary movements caused past times the deterioration of the brain. However, hard disk also produces cognitive decline as well as psychiatric as well as behavioral issues, which commonly leave of absence patients disabled. Both of these symptom types oft occur earlier the motor symptoms.

In the past times decade, HDSA worked for the introduction of a mouth inwards Congress, the Huntington’s Disease Parity Act, to alter the hard disk listing as well as eliminate the two-year waiting menstruum for benefits. HDSA has also direct lobbied the SSA.

Initially, the SSA responded favorably. It took a large stride inwards Apr 2012 past times listing juvenile onrush hard disk equally eligible for a Compassionate Allowance, thus quickening the blessing of applications for benefits, which tin possess got many months as well as fifty-fifty years as well as sometimes require applicants to resort to an arduous appeals process. Later that year, adult onrush hard disk also became eligible for the allowance. (Click here to read to a greater extent than virtually Compassionate Allowance, HD, as well as Social Security benefits.)

However, when the SSA on Feb 25 released its draft of updated neurological listings – the root such revision inwards to a greater extent than than thirty years – the description for hard disk remained woefully inadequate.

A ‘glaring omission’

“We were sure enough disappointed when the listings … made no practical advancements inwards the might of their (SSA) examiners to possess got a truthful motion painting of the clinical manifestation of Huntington’s,” said HDSA CEO Louise Vetter inwards an interview today. “They drib dead along to depend on the motor symptoms. There is a large trunk of cognition plainly that gives the cognitive as well as behavioral symptoms equal importance inwards the progression of the disease.”

HDSA CEO Louise Vetter (photo past times Gene Veritas)

On March 27, HDSA issued an analysis of the SSA hard disk listing that it posted on its website (click here to read more).

“Based upon HDSA’s analysis, this listing leaves many of the same gaps unaddressed as well as is worse than the listing nosotros possess got now,” the lodge states. The proposed listing puts fifty-fifty to a greater extent than emphasis on the motor symptoms. (To obtain benefits, patients must hold upward examined past times at to the lowest degree 1 doctors as well as furnish whatsoever medical documentation requested past times SSA.)

The HDSA analysis constitute an “inconsistency betwixt the listings (that attain non lift whatsoever non-motor symptoms) as well as the preamble, which states that: ‘When these disorders resultant inwards alone cognitive as well as other mental business office effects, nosotros evaluate the disorder nether 12.02/112.02 (for juvenile).’” The number twelve refers to the mental wellness listings, where full general issues alongside neurological disorders such equally hard disk are also described.

HDSA argues that “unless these other sections are spelled out inwards the listing itself, the examiner (and fifty-fifty a medical professional person who is unfamiliar alongside HD) won’t know that they should await at the preamble because the individual alongside hard disk appears fine inwards individual as well as oft lacks the insight to clit symptoms.”

The “glaring omission” of non-motor symptoms inwards the SSA listing “will crusade individuals disabled past times non-physical symptoms to hold upward denied,” the HDSA analysis concludes.

One advocate told me privately that the SSA as well as hard disk specialists “don’t ever mouth the same language.” For instance, what hard disk specialists clit clinically equally “apathy,” a hallmark symptom of HD, must hold upward constitute inwards the SSA criteria nether “anhedonia.”

Educating the bureaucracy

As of this writing, the SSA dot individual had non responded to my telephone message requesting comment on the hard disk listing. Cheryl Williams of the SSA Office of Medical Listings Improvement is indicated equally a contact individual inwards the Federal Register, where the SSA published the proposed neurological listings.

Vetter offered “two plausible explanations” for the inconsistency inwards the neurological listing.

First, the SSA is “struggling alongside a alter inwards leadership” afterwards Commissioner Michael Astrue finished a six-year term, retiring inwards Feb 2013. Astrue had approved the Compassionate Allowances as well as fifty-fifty appeared inwards a video made especially for the 2012 HDSA national convention. Since Astrue’s departure, SSA has operated nether an acting commissioner, Carolyn Colvin. Thus, “new staff” received the chore of revising the neurological listings, Vetter observed.

Second, Vetter noted the complexity as well as length of a document roofing numerous neurological conditions.

“I recognize that it’s a tall monastic tell to conveniently define HD,” she said. “This is a bureaucracy looking for elementary definitions, as well as hard disk is non easily characterized inwards convenient language. From that perspective, they’re trying to simplify a complex disease. That is inevitably going to Pb to some gaps, as well as we’re calling them out on that.”

Pressing for a meeting

Vetter added that, at some level, the SSA doesn’t sufficiently understand HD. HDSA is seeking “direct dialogue” alongside the SSA, but as well as so far the SSA has refused to meet.

Vetter speculated that, if the SSA meets alongside hard disk community representatives, it fears “the slippery slope” of having to run across alongside all illness groups.

HDSA, Vetter said, must convince the SSA of the uniqueness as well as complexity of hard disk as well as hence the postulate for to a greater extent than “guidance” for the medical examiners who create upward one's heed whether hard disk patients have disability benefits.

“We should hold upward granted an exception,” she declared. “We won’t possess got no for an response on this one.”

How to ship a message to Social Security

HDSA CEO Louise Vetter has formally submitted the HDSA analysis equally a comment for SSA consideration, equally possess got several dozen other hard disk advocates as well as identify unit of measurement members.

Vetter urged hard disk advocates, identify unit of measurement members, as well as supporters to also submit comments to the SSA. You tin thought others’ comments as well as add together your ain past times clicking here. Your tin only solid soil that you lot back upward the HDSA's input on the Huntington's listing, or you lot tin leave of absence a personalized comment of greater length.

The deadline for comments is Apr 28.

Removing barriers to agreement HD

Advocacy on this number forms component subdivision of a larger endeavour past times HDSA as well as the hard disk community inwards favor of the Huntington’s Disease Parity Act of 2013, a mouth that would direct the SSA to update as well as expand its hard disk listing as well as waive the two-year waiting menstruum for hard disk patients to have Medicare benefits.

The electrical flow setback is “not a reflection on the hard disk community’s momentum at all,” Vetter said. “I know that nosotros withal possess got many rigid advocates inwards the SSA. They are trying to let on a agency to conform hard disk inwards a complex process. Hopefully they’ll hold upward able to reach that quickly. I don’t intend nosotros should hold upward disheartened.”

Little past times little, hard disk advocates are “removing barriers” to agreement of the disease, she added.

To larn to a greater extent than virtually how you lot tin aid alongside hard disk advocacy, contact the nearest chapter of HDSA or write advocacy Jane Kogan, HDSA’s director of instruction as well as advocacy, at jkogan@hdsa.org.

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