Planning for the future

The topic of future care can be overwhelming for a parent of a child living with Lennox-Gastaut syndrome (LGS). But the reality is, there may come a time when parents are unable to provide the necessary care. There are several different options for continued care that can be helpful when making this important decision:

Independent living

Independent living

Some adults living with LGS choose to live independently, alone, or even with roommates.1

Residential Facility

Residential facility

Often called "group homes," residential facilities are usually staffed and funded by the social services sector.1

With Family

With family

Some adults continue living with a family member or with their parents.1

Adult Foster care

Adult foster care

Some adults live in the home of a foster parent who can ensure they have regular supervision and care.2

Learn about assisted living options for a child with LGS

See more from this series

Things to consider

Taking steps now to plan for your child's future can give you comfort knowing he or she will be well cared for. Depending on the state, or even the city or county you live in, there may be several assisted living options available.1

Additional resources for assisted living can be found here.

The benefit of financial planning

Long-term financial planning is essential in order to ensure that your child will receive continued support should your circumstances change or if you are no longer able to provide care. It's important not to put this decision off because it can help avoid difficulties in the future.3

Focus on the future

Be sure to familiarize yourself with your child's health insurance policy before he or she enters adulthood. When your child turns 18, different medical and nonmedical rules are used to decide if he or she can qualify for Social Security Income (SSI) or Medicaid disability payments.3

It's important to establish guardianship for your child. By establishing yourself as the legal guardian for when your child turns 18, you will have the ability to legally handle his or her assets and make decisions that are in your child's best interest despite his or her legal status as an adult.3

Lastly, develop a financial plan that best represents the interests of the person living with LGS. A parent can set up3:

  • A special needs trust A section of your will that acts as a receptacle for money earmarked for the child. This trust is typically designed so that none of the money can be used for food, clothing, and shelter—all service provided by government programs. However, the money may be used for amenities that government programs do not provide such as travel, entertainment, and recreations.
  • A Medicaid plan Provides health coverage to children, families, pregnant women, the elderly, and people with disabilities. Available in all states for children under 19 and may pay for a full set of services including preventive care, immunizations, screening and treatment of health conditions, doctor and hospital visits, and vision and dental care.
  • An inheritance Money or property that is left to your child in the event of your death. In general, a child must wait until he or she is 18 to collect any inheritance left to him or her.
  • An estate plan The process of anticipating and arranging for the disposal of an estate. Estate planning usually attempts to eliminate uncertainty when a legal guardian passes away.

Click here for more information on financial planning from LGSFoundation.org.3


LGS (Lennox-Gastaut Syndrome) treatment options

LGS Treatment Option

Find out about a prescription treatment that may help reduce seizures associated with LGS.

Learn more >

References:

  • 1. Special Needs Answers. Housing options for adults with special needs. http://specialneedsanswers.com/housing-options-for-adults-with-special-needs-14975. Updated February 1, 2015. Accessed November 27, 2019.
  • 2. AARP Public Policy Institute. Adult foster care. AARP.org Web site. http://www.aarp.org/home-garden/housing/info-03-2010/fs174.html. Published March 2010. Accessed December 1, 2019.
  • 3. LGS Foundation. Adults and LGS. LGS Foundation Web site. http://www.lgsfoundation.org/adultsandlgs. Accessed October 21, 2019.