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In a blog post in October, we featured the abridged conversation between me and two Social Security experts Sandra Lamb and Jane Johnson, from the recent Beyond the Diagnosis podcast episode 69 about SSDI and Compassionate Allowance for those with Histiocytosis to use when applying for disability. If you missed it, you can read it here.

In this post, we will be talking about the rest of that conversation, from BTD episode 70: Navigating Social Security & Disability Benefits for Children: Compassionate Allowance Expansion for Histiocytosis.

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Navigating Social Security & Disability Benefits for Children: Compassionate Allowance Expansion for Histiocytosis.

Me: For parents out there who have little ones diagnosed with histiocytosis, what is the process like to navigate social security and disability benefits?

Jane Johnson: Children are only eligible for supplemental security income…they’re only eligible if the family meets the technical requirements of very low family income and very low resources. This eligibility when it comes to children is very complex. It includes the parents’ income. It includes the number of children in the family and other different criteria.

With children, it almost always needs to start with an assessment with the rep and then possibly with Social Security to see if they’re eligible. Important for parents to know is that all that changes when their child turns 18 years old…So up until 18, everything is going to be based on the family. The technical criteria is going to be based on the family situation.

Sandra Lamb: There’s the issue of expanded versus non-expanded states, Medicaid states. In some cases, Medicaid comes with approval of SSI only. Those are in the unexpanded states. In the expanded states, you can apply your child for Medicaid. The child can receive that separate from SSI.

Medicaid is, in my opinion, a launching pad for services throughout childhood whether they be speech therapy or physical therapy or medications. It is definitely a good thing to have, and the question is depending on the state you live in, how to get that? How to acquire that if you are in the process of applying for SSI and you need the Medicaid and your state is expanded, you can’t apply for it. Separate from SSI.

Me: It sounds like the benefits for children who are in remission but still require follow -up therapies such as occupational speech, physical and mental health therapies that would, you sort of answered that in the first question? The process would be still related to those technical eligibilities.

Sandra: Well, again, to qualify for Medicaid, you have technical criteria that you must meet in terms of the assets, resources, and so forth. Yes.

Jane: parents should always be asking, am I qualified? Is my child qualified? And it changes sometimes.

Me: I imagine parents go through this process and some have the frustrating news of getting denial. How do they navigate that? Is there a time limit for when they can appeal and try to request the benefits for their children?

Jane: So if the denial is a technical denial, that’s hard to overcome. It may be possible sometimes, but rarely can you overcome a technical denial. If it’s a medical denial, then definitely it should be appealed.

It should be appealed within 60 days. The actual cutoff is 65 days because they get five days for mailing. Also, if they are not represented, if they will get a representative, even if it’s past the 60 days by a month or two, they will accept good cause for not filing because they weren’t represented. So if a child is denied for medical reasons, the best thing to do is to find a rep.

Sandra: I really encourage all parents to keep copies of records make copies, keep them chronologically stored at home, don’t give them away. If you see a new doctor, give them copies, but keep master copies because at some point later you have proof that your child had this illness, this debilitating illness before the age of 22, which opens up a whole another level of benefits.

And the unfortunate thing is that records are purged a lot of them. I don’t know if it’s a state-by-state thing, but after seven or eight years, those records are gone. If your child becomes ill at 23 and you can’t prove that that underlying condition was existent before the age of 22, or if your child is 35,etc., you can’t go back and retrieve those records to prove the disabling condition. So some people just lose out.

Me: I really appreciate both of you for taking the time today to walk through this process and to answer the questions from the community. Is there anything else you’d like to add, anything that we missed or any guidance that you generally give your clients that you were hoping to share today with the Hisstio community?

Jane: The first recommendation is never call the national social security number. It ends in 1312, do not call that number. You can look up your local social security office with the SSA office locator and your local office will give you real information. The national number just doesn’t know.

The second thing is that all initial consults for social security disability with any rep are absolutely free. There’s never a charge for that. And you can’t understand all of the law in the gray area that goes into it. The people who are dealing with this disease, either in themselves or their children, have way more important things to do than that. A phone call to a disability rep should be absolutely the first thing to just get the lay of the land.

Me: And Jane, I know that you mentioned that you would be willing to help people in the community that wanted to reach out to you. How might they be able to do that?

Jane: Absolutely anybody can call at our number is 828-394-9657. Megan will take their call and answer their questions and what she can’t answer she will turn over to me. My personal email address is Jane@Foothillsdisability.com. I answer emails all times of day and night. They’re welcome to reach out to me that way too, to just kind of ask questions and start to get an idea of what to do.

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A Look Back

As we prepare to close the year out, I want to thank each and every one of you for your commitment and dedication to our shared mission. This year has been filled with progress and hope; we have been fortunate enough to meet many of you in person at events all across the country and different parts of the world.

The Histiocyte Society’s Annual Meeting held in Goa, India was a success and brought participation from parts of the world we haven’t been able to engage in person in a long time. You helped us bolster our support and resource programs, bringing connection and community to hundreds of families.

We’ve worked to audit, verify, and expand our physician directory and are excited to continue to expand our efforts through awareness and education. You have made a tremendous impact. In the coming days, we will announce the 2024 Annual Research Grant Program award recipients, and will continue to spur on transformative research for better understanding of histiocytic disorders, faster & more accurate diagnosis, and better treatments.

We spoke with investigators from the 2023 program and heard the progress they have already made (listen to the HopeCast here) – and we know the next round of award recipients will be no different in their dedication to moving us closer to cure.

Next year, we will be hosting additional regional meetings, working with the National Comprehensive Cancer Network to add malignant histiocytosis to the NCCN Clinical Guidelines, and will be expanding our awareness, education, and support efforts and programs including translation of our brochures into additional languages.

We’d love for you to review the Impact Report to see how you helped make a difference through your support of the Histiocytosis Association. And, we’d love to hear from you. Please send any ideas, feedback, or questions to info@histio.org. Thank you for allowing us the opportunity to support you on your journey. Have a beautiful holiday season and a happy New Year.