Applying for Disability - the New Time-Frame

As a singer, teacher, and church musician, it has always been my practice to have several part-time jobs, sometimes in addition to a full-time position. My husband is self-employed, and we have had no insurance since 2007, when I was released from my permanent teaching position. Unfortunately, it was also the year I lost my two most important singing jobs. During the next few years, I worked at a few part-time positions, including Columbia College, where I was on the adjunct faculty, a retirement home where I worked with Alzheimer's patients, and as a secretary in a church office. I hoped that one of those jobs would turn into a full-time position, with benefits, but that is not the way it worked out for us.

In February, 2013, I was suddenly and unexpectedly fired from the job in the church office, and I couldn't even collect unemployment. During this time, I tried my best to get job interviews, and I did get a couple. However I did not put on a very good show during the job interviews, and pretty much embarrassed myself. After a few weeks, where I continued to work on weekends and Mondays at the retirement home, I realized that it was time to apply for Social Security Disability. 

I sent a letter to my neurologist, telling about my job problems, and she invited me in to the office to start the process of applying for disability. During my appointment, we discussed my condition, and she wrote on my form: Judy should quit working and apply for disability. At this point, the social worker in her office became my "best friend," and was extremely helpful with information. Because HD had only recently become a Compassionate Allowance disease, no one I spoke with really knew what to expect. This is how it worked out for me:

• First, be sure to have at least two doctors, including your neurologist, who know that you have HD, and will vouch for the fact that you are applying for disability. I went to my family practice doctor about a year ago, and told her that I had HD, and was in a clinical study at that time. She also gave me a prescription for Celexa, which I was already taking through the study.

•  Secondly, fill out the online application found at:  My Social Security Home. Prior to 2012, everyone was told to follow the advice of Phil Hardt (who was a great advocate for people applying for disability). Now, after the Compassionate Allowance decision, some of Phil's information isn't applicable. But, while completing the online application, be sure to stress the devastating nature of HD (using the wording recommended by Phil Hardt), and that it is a Compassionate Allowance Disease.

• Next, Social Security will send you an email link to a more detailed application. Once again, this will mostly be information about your doctors, medications, etc. You won't have to answer any "function report" type questions, which were so stressed in the past. Make sure that you write "Adult Onset Huntington's Disease" and "Compassionate Allowance" as many times as you can. 

• After they have looked through your application, they will schedule a phone interview, letting you know either by phone call or email.

(Note: At this point, my application went the wrong way -- they scheduled an interview two months in the future. Since it is a Compassionate Allowance Disease, they should schedule the phone interview ASAP. If not, call them back as often as necessary, (daily!) to remind them of "Adult Onset Huntington's Disease" and "Compassionate Allowance." I left frequent messages, but it wasn't until I spoke with an actual agent that they gave me a good response. In Illinois, the office who handles Compassionate Allowance Diseases is in the Springfield office, so be sure to answer the phone if you get a call from a strange area code!)

• Once your application is in the correct office, at the state capital, they will contact the doctors that you listed. In just a few days, you should receive your phone call, from your local office, letting you know that you were granted disability. They will send a follow-up mailing via snail-mail, too. There is a five month waiting period for the first benefit check (for me it will be in December), but if you have financial need, they will ask you some questions about your cars, house, bank accounts, etc., to see if you qualify for extra financial help (SSI).

• If you are already employed part-time, you may be able to keep your job. I am still working 15 hours a week at the retirement home, where I work with Alzheimer's residents. Depending on your situation, you may be able to do it. Once again, my social worker was very helpful in getting me information about this. First, I revealed my status to my bosses at the retirement home, and asked that I not work more than 15 hours a week. I have to save my pay stubs from there, and submit them monthly to the Social Security Office, so they can make sure I don't go over the designated amount. My employers are very supportive, for the most part.