Huntington’s Disease: Filing for Disability
By Sharon McClellan Thomason
Filing for disability and navigating the system of SSDI, SSI, Medicare, and Medicaid can be both challenging and frustrating. It’s a world we usually know little about until we plunge headlong into the journey of Huntington’s and Juvenile Huntington’s disease.
I consider myself to be a well-educated and reasonably intelligent woman, but I can tell you that helping my son file for disability and associated benefits stretched my knowledge and problem-solving skills to the limit.
Here are some things I learned along the way.
First, some simple definitions you will need to keep in mind—make these a part of your new vocabulary:
- SSDI stands for Social Security Disability Income. This is administered by the federal government, once it’s determined that you have a disability.
- SSI stands for Supplemental Security Income. This is administered by the Social Security Administration and is income-based, providing cash assistance and healthcare benefits (Medicaid—see below) to people with limited income and resources.
- Medicare is a federal healthcare program. Once you’ve been on disability for two years, you are automatically eligible for Medicare. People who have worked and paid into the system are also eligible for disability upon turning 65. Medicare has Parts A, B, C, and D. Part A is hospital/hospice insurance; Part B is medical insurance that covers doctors’ visits; Part C is an optional Medicare Advantage plan; Part D is a prescription drug plan.
- Medicaid is a state-run program for people with limited income and resources. It also covers things not normally covered by Medicare, like nursing home care and personal care services. It is funded jointly by the state and federal government, but eligibility varies greatly from one state to another. States that have granted Medicaid expansion under the Affordable Care Act are more likely to grant eligibility for Medicaid. The map here (https://commons.wikimedia.org/wiki/File:ACA_Medicaid_expansion_by_state.svg#/media/File:ACA_Medicaid_expansion_by_state.svg) shows which states have Medicaid expansion. Medicaid also includes optional dental services for people over age 21.
As a basic review, SSDI and Medicare are federal programs that are not income based; SSI is a federal program that is income based; Medicaid is a state-run program that is income based.
Compassionate Allowance List and Appealing a Denial
When applying for SSDI, it is helpful to know that Huntington’s and Juvenile Huntington’s disease are included under something called the “Compassionate Allowances List,” or CAL. (https://www.ssa.gov/compassionateallowances/). According to the Social Security Administration, “The CAL initiative helps us reduce waiting time to reach a disability determination for individuals with the most serious disabilities. The Compassionate Allowances program identifies claims where the applicant’s disease or condition clearly meets Social Security’s statutory standard for disability.”
So this should make the awarding of disability benefits automatic, right? Not necessarily. The trick to claiming this allowance is knowing where it is listed and alerting the claim worker that HD is on the CAL. Interestingly, HD can be found in two places: under ‘A,’ as Adult Onset Huntington Disease, and under ‘M,’ as Mixed Dementias, where Huntington’s dementia is listed under alternate names. It is NOT listed under ‘H.’ Juvenile Huntington’s disease isn’t so hard to find—it’s under ‘J,’ as Juvenile Onset Huntington Disease. The complete list, with links to the above named, can be found here: https://www.ssa.gov/compassionateallowances/conditions.htm. The listing for each includes the necessary documentation to include with your application.
When I helped my son apply for SSDI, HD was not listed on the CAL. I used the guide developed by Phil Hardt, available through the Huntington’s Disease Lighthouse Foundation (http://hdlf.org/node/210), which many families have used successfully. After a few years of severe psychiatric symptoms, a positive genetic test with a CAG of 45, and a diagnosis by a neurologist, I started the application in the summer, after school was out (I was still teaching full time). Despite following the guide precisely, the application was denied. We then had the option of appealing. By then, I was back at work and was afraid I didn’t have the time to do the appeal properly, so I hired an attorney who specializes in Social Security law. This seemed like the ideal solution since they, by law, do not require any payment up front, and receive a set payment only upon a successful appeal. I should’ve done my homework, though, as I learned that all Social Security law firms are definitely not created equal! The one I hired had me do all the work (gathering and mailing paperwork, filling out forms), and I only met the attorney once—to sign the contract. After that, I dealt with a paralegal who sometimes returned my phone calls, most often, not. I even found out that the appeal had been approved before they knew it!
My hope is that with the Compassionate Allowances, and with organizations that help you with applying for disability, you will not experience the difficulties we experienced. At one time, the Caring Voice Coalition helped people apply for disability; however a statement on their website (http://www.caringvoice.org/disability-assistance/) says, “CVC’s disability program supports patients through the various stages of the Supplemental Security Income and Social Security Disability Insurance application process. Our patient advocates coordinate supporting evidence, assess eligibility, submit claims for benefits and draft arguments. The disability program is temporarily at capacity. We hope to begin accepting new applicants for this service soon.” Instead, they are referring people to the Huntington’s Disease Assistance Foundation and the National Organization for Rare Disorders (NORD).
Another thing I learned that evidently is not generally known is that my son, who had very limited work experience before the onset of HD, qualified for additional benefits as the “disabled adult child of a disabled adult.” The window is very limited, as defined below:
An adult disabled before age 22 may be eligible for child’s benefits if a parent is deceased or starts receiving retirement or disability benefits. We consider this a “child’s” benefit because it is paid on a parent’s Social Security earnings record.
The “adult child”—including an adopted child, or, in some cases, a stepchild, grandchild, or step grandchild—must be unmarried, age 18 or older, and have a disability that started before age 22. (https://www.ssa.gov/planners/disability/qualify.html#anchor8)
Since my son’s father had passed away from Huntington’s disease, and he had a strong work record, Randy was able to qualify for about $250 extra in SSDI benefits, more than he would have received under his own work record.
Social Security also provides something called “Extra Help” with the Medicare prescription drug plan. To see if you qualify and to apply, go here: https://secure.ssa.gov/i1020/start. Note: if you already receive Medicare and Medicaid or Medicare and SSI, you do not need to apply as the extra help is automatic.
As daunting as it may seem, don’t give up on applying for these benefits! If you are a person with HD, get an advocate to help you with applying. The benefits are ones to which you have a right, and they can make a huge difference in your quality of life!