A diagnosis of a rare condition such as a hypothalamic hamartoma often results in multi-disciplinary care and the team required to support the individual throughout their lifespan may involve many specialties and costly therapies. Families worry about not only health insurance coverage for expensive medications and surgery, but missing work or having to give up a career to be home to take their loved one to doctor’s appointments and therapies. In addition to worrying about monthly bills and expenses, there are often concerns about how to prepare for the long-term financial well-being of the individual. This could mean setting up a special needs trust and ensuring the individual is eligible for government benefits. For other financial topics you may want to learn more about, go to Financial Planning for a Child with Epilepsy.

For adults with HH and epilepsy, the challenges are just as complex. Does it affect your ability to work? Is an employer willing to make accommodations for your circumstances? What is your backup plan if you cannot work? Two great resources to help you answer these questions are: Disability Services and Disability Benefits Help

Also, learn more about other income options:

  • Medicaid (US) – If the comorbidities/symptoms of HH or complications of surgery have rendered an adult unable to work, Medicaid (gov) is government funded and is available as an insurance option. Similarly, children are eligible for Medicaid if they have been identified as having any disability.  For children, government funded insurance is in addition to any primary insurance that their parents may have and their parents’ income is irrelevant to the child’s eligibility.
  • Social Security (US) – In addition to government funded insurance, adults and children (if family is low income) with disabilities may be eligible for further income from Social Security (gov). Be sure to consult your specific state and national services for program eligibility and how to apply for funding.
  • Long Term Care for Adults with Disabilities (US) – Some individuals diagnosed with a hypothalamic hamartoma may need additional care as an adult. Once this becomes apparent in the journey of an individual, it’s never too early to consider establishing a plan for the individual’s ongoing needs. To help plan and save for the future, a Special Needs Trust and/or an ABLE Account may be considered (in the US). The family and caregivers will want to consider who will have Guardianship over the individual not capable of making decisions alone for him/herself.  Federally, Adult Services are available, and locally, the family may apply for local and regional housing lists. Last, often times a specialized lawyer is needed to help navigate laws surrounding the programs available for an adult with a disability needing long term care. To learn more about how to find and work with a special needs planning attorney, go to Special Needs Answers.

*Be sure to consult your specific state and national services for program eligibility and how to apply for funding.