Long-term Care Options
John Mytinger, MD, is an attending child neurologist and epileptologist at Nationwide Children’s Hospital and Assistant Professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. Dr. Mytinger is a paid consultant of Eisai Inc.
By adulthood, greater than 95% of people with Lennox-Gastaut syndrome (LGS) have cognitive impairment (the inability to remember things, learn new things, concentrate, or make simple decisions).1 This condition can worsen with time. As a result, most adults with LGS cannot live on their own. They will require some degree of support. It is critical that families who care for children with LGS have a plan for expected and unexpected life events.
Create a living will
Families should have a plan if caregivers become unable to provide care. Long before this becomes a reality, families should appoint a new caregiver who has clearly expressed a willingness to assume the care of the child. This is true even if the current caregiver is healthy and able.
If the caregiver dies, it is important that his or her wishes are clearly outlined in a living will. A legal living will can be created using online resources or with the help of a social worker or lawyer.
It is critical that families who care for children with LGS have a plan for expected and unexpected life events.
Consider family members at risk for injury
Many families can successfully care for children with LGS in their home. However, children with LGS can have behavioral problems, including aggressiveness.1 Behavioral techniques and medication are sometimes helpful. Unfortunately, this aggressiveness cannot always be controlled in the home. Families may be forced to consider having their loved one with LGS live in a place that can provide care for him or her.
It is critical for families who care for children with LGS to be aware of guardianship issues. There are many options to investigate when the child reaches age 14. Not all children with LGS require someone to have complete guardianship; sometimes a payeeship (a person chosen to manage the finances of someone who is unable to handle them on his or her own) or power of attorney is appropriate.
Christina SanInocencio, Founder and President of the LGS Foundation, provided further detail on guardianships in her article Lennox-Gastaut Syndrome in Adulthood. I suggest you read it for more information.
Supplemental security income
The rules for supplemental security income (SSI) are different in children and adults. Some children with disabilities may qualify for SSI, but family incomes may be considered.
If a child does not qualify for SSI, they may qualify when they turn 18 years old. More information is available from the Social Security Administration.
Another financial option to consider is a special needs trust. The article Lennox-Gastaut Syndrome in Adulthood has more on this topic.
Long-term living arrangements
The type of living arrangements for individuals with LGS will depend on the degree of independence he or she has. It will also depend on available local resources. Some individuals may be able to live with little help, have a job, or do volunteer work. Many others succeed in group homes, which may offer different degrees of supervision. Others need facilities that require complete care for all activities of daily living.
You should pursue the resources available in your area such as the welfare office, county disability organizations, hospital social workers, and regional Epilepsy Foundation affiliates.
Connecting with other families caring for individuals with LGS may be very helpful and rewarding. Such connections may be available through the Lennox-Gastaut Foundation on Facebook and the Epilepsy Foundation. In addition, organizations that support people with similar issues regarding long-term living arrangements may be a valuable resource. Many online support resources are available such as Mommies of Miracles, LGS Hope, and the Caregiver Action Network.
There is a lot to think about to ensure your child’s long-term care. These suggestions and the resources listed here should help you start the process.