Lennox-Gastaut Syndrome (LGS): Planning for the Future

Making ongoing adjustments to your life becomes second nature for LGS families. But, the transition from childhood to adulthood requires some planning to make it as seamless as possible.

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Nearly 55% of caregivers surveyed by the LGS Foundation felt they were not prepared in planning for their loved one’s future.

Key Questions for the Future

Your Healthcare Team

Adulthood brings about the need to switch from your trusted pediatric neurologist to an adult neurologist. Be sure to ask:

  • Does the neurologist understand or specialize in the needs of adults with LGS?
  • Are there other specialists, such as an epileptologist, or physical and occupational therapists, who may be able to help with my loved one’s care?

Your pediatric neurologist should be able to refer you to an appropriate adult neurologist. If you need additional help, visit the National Association of Epilepsy Centers.

Guardianship

By obtaining legal guardianship of your loved one when he or she turns 18, you will continue to have the ability to legally make decisions that are in his or her best interest. Remember to ask:

  • Can my son or daughter make some, or limited, medical and financial decisions on his or her own?
  • Have I contacted an attorney and/or financial planner to begin the legal guardianship process?

For more information, visit USA.gov.

Financial Planning

When planning for future financial needs, ask:

  • Does my loved one qualify for Social Security Insurance (SSI)?
  • Have I considered creating a Special Needs Trust?
  • Have I discussed other financial options, such as an OBRA Supplemental Trust, with an attorney?

For more information, visit the Social Security Administration or Medicaid.gov.

Post-Secondary School Planning

After finishing school, many meaningful opportunities exist for adults with special needs. When considering the transition to adulthood, ask:

  • Have I utilized individualized education program (IEP) transition services to help prepare my loved one to move beyond a school environment?
  • Have I considered a day habilitation program or one-on-one mentorship to help my loved one develop living and social skills? Habilitation refers to services for those who may not have ever developed a skill, such as a child who is not talking as expected for his or her age.
  • Have I considered person-centered vocational guidance to help my loved one find the best options for employment?
Residential Planning

At some point, the time may come for you to consider who will continue to care for your loved one. When making residential decisions, ask:

  • Have I explored all of the different living options that are available?
  • Does my preferred living arrangement provide access to programs and facilities that encourage skills to help my loved one be as independent as possible?
  • Have I brought my loved one to meet and get to know the staff and other residents?
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