Before we had much shape or form, Adira saw a need and acted through a test pilot grant to the Huntington’s Disease Society of America (HDSA) in 2019 so they could build a program to educate social workers and Huntington’s disease (HD) families around the Social Security Administration’s (SSA) disability programs.

Bartlett

Since the fall, the program has reached nearly 800 people seeking information about disability benefits. And recently the monthly outreach numbers have doubled—likely in connection with a tumultuous economy.

Attorney Allison Bartlett serves as the manager of HDSA’s disability program, a role she transitioned to after many years practicing disability cases, often for HD families. She shared some of the highlights of her work and how she envisions it could grow in the coming months.

What’s the goal of the program?

The disability program is an educational program for social workers and families. Social workers typically come from HD Centers of Excellence—health centers that work with HDSA to meet a certain level of quality care for people with HD—and refer families to our resources or directly to me.

disability education bookletI help families start thinking about and planning for the Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) application processes. And while I would love for everyone to come to me first before they begin the application process, many also find their way to me after they’ve applied on their own but were denied. I help them understand the appeal process and what information is needed to submit a strong appeal, or I provide legal resources to help them find an attorney.

I am also working to create a resource library so that I can widen our reach. It allows HD families to learn about the process on their own or someone, such as a social worker, can use the resources to help them.

What are some highlights of the program so far?

In 2019, I assisted and provided educational resources to approximately 100 social workers and 270 HD families by phone and email regarding the SSA disability process and the appropriate next steps for the disability application.

Through February, our reach was consistent from month to month, somewhere between 60-80. Since the pandemic, my contacts have almost doubled. I’ve had 604 consultations and 130 just last month. August is tracking similarly.

Aside from one-on-one education, I travel to speak at gatherings—or at least I did before the pandemic. I have:

How has COVID-19 changed things?

Engagement is up, but it’s hard to say what the cause of that is. To some degree we predicted growth since it’s a new program.

The SSA field offices did stop taking in-person visits but have never technically been closed. So much of the day-to-day disability process is state specific, so it’s hard to judge the whole. But I do think there’s been an impact.

Some hearings are happening faster because they’re all happening over the phone. I’ve been seeing more denials—which could be because of the increased strain on the system due to the pandemic. I think nationally there’s been an uptick in disability applications, and I’ve seen more interest, too. When applications go up, approval numbers tend to stay the same, so that could explain the increase in denials.

COVID-19 changed a lot of the plans I had largely based around traveling to in-person gatherings to train or educate. Some of those events have moved to virtual. I’ve even found I can participate in some I wouldn’t have traveled to.

What challenges do people with HD run into applying for disability?

Major questions continue to focus on when to start the disability process, tips for submitting a disability application, health insurance, work credits and disability eligibility, and case-specific questions.

I’ve provided counsel on a lot of topics. Some that come up a lot are:

  • Patient rights in nursing home facilities.
  • How to apply for SSDI or SSI when families live in different states.
  • Options for families when Social Security disability credits have expired.
  • How to find or access health insurance resources, or other useful/needed resources.
  • Employer rights.
  • Disability vs. employment law—for example, can you be fired because of an HD diagnosis? (The answer is no, not directly.)

What have you learned?

There’s a lot less awareness about disability than I ever realized. There’s a lack of communication about the whole disability spectrum—employer-provided, private disability, and how those things interact together.

The truth is, nobody wants to talk to me. Nobody wants to think about a moment where they might need to apply for disability benefits.

But I recommend people step back and think: What are the five things I might need moving forward, based on what I know now? And that can help you plan in a more tangible way.

Especially with genetic conditions, it’s important to talk about these things earlier. You likely need to know if your employer provides disability. If you think you’ll need that income, it’s better to start paying into it early.

Over the last year and a half, I’ve seen a shift with long-term care and life insurance policy providers asking whether families have a history of HD. This makes it harder to get those insurance benefits.

If you have a family history of HD or you answer yes to any of the following questions, you will not be able to get long-term care or life insurance policies:

  1. Are you symptomatic?
  2. Have you seen a neurologist?
  3. Have you had any cognitive issues?

I’ve seen firsthand a clear need for good legal representation and not just in the disability realm but also wills, trusts, advance directives, power of attorney, guardianship, asset protection, Medicaid eligibility, etc. There is also need for access to good medical care—only 25 percent of people with HD get care from a Center of Excellence.

What other resources do you want people to know about?

I host a bimonthly “Disability Chat” webinar series to cover a wide range of disability topics for families and social workers. To date, 274 people have tuned in live for these and 1,305 have viewed the recorded versions—and I hope to see those numbers grow.

Our team has built a more user-friendly “Disability” section on the HDSA website and added new SSA resources for families and the HD community. We also created a new section for health insurance resources.

Every Monday we post a new HD disability tip on social media.

I’ve created many disability resources/printed materials:

What’s coming up for the program?

I am always trying to broaden my reach into the social work community. Most social workers don’t get training about disability. I hope to educate social workers enough that they can educate families on their own.

I hope to build a partnership with the U.S. Department of Veterans Affairs (VA) to provide more detailed resources on HD and the disability process, which can include both VA and Social Security benefits. The VA already has partnerships and specialty care centers for multiple sclerosis, ALS, and Parkinson’s disease, so there is room for growth.

I also hope to hold trainings for anyone who might come across HD-specific disability cases. And, of course, I will keep spreading the word about the program, helping as many as possible.

As far as I know, I’m the only HD-specific disability law educator. I’d love to find as many ways as possible to share my wealth of disability and legal knowledge so more families can be helped and live their best lives. Disability is not just Social Security benefits. It is health insurance, private insurance benefits, wills, asset protection, and legal safeguards to make sure the person with the disability is protected and cared for. This is a process that will be ongoing for a lifetime because people and circumstances are always changing. If you start the process too late you will always be playing catch-up.

Every day somebody thanks me for the information I give them. Very few people have this specialized knowledge who are just here to listen and educate on this topic without judgement or cost. Personally, it’s encouraging to look back on the many people I’ve talked with and be able to say that I think my process helped them get approved.

Learn more about Adira’s programming here.
Find Allison at HDSA.org.