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Applying for disability benefits is a necessity for most HD families, but it is only one aspect of the disability process. The disability process is often complicated and overwhelming, whether it is a Social Security disability claim, legally planning, financial planning, or understanding the many different types of insurance benefits.

“Part of the difficulty with the disability process is having to come to terms with applying for disability,” said Allison Bartlett, HDSA’s Senior Manager of Disability Programs. “There is always fear and concern about the difficulty of the process and how long it will take, but there is also sadness. No one wants to be forced to stop working because of an illness. Every client I have had said they would keep working if they could. It is okay to be sad and frustrated, that is part of the disability process, but remember that Social Security disability is a benefit that you pay into. If you need SSDI because of an HD diagnosis, you have earned that benefit and no one should feel bad about taking it.”