Epilepsy Foundation Residential Programs: A Place to Call Home

By Sylvia Blair
EpilepsyUSA staff
Posted: June 30, 2003

Most of the time, when a child reaches his late teens or early twenties, parents start the "letting go process," realizing that very soon their child will spread his wings and become independent. Children may go to college, move into apartments with roommates, or even in some cases, get married.

But for parents of children with epilepsy, the scenario may be somewhat different. In some instances, adult children with epilepsy remain living with their parents for years, unable to master the skills of independent living.

Over the years, parents of adult children with epilepsy interested in helping them learn to live on their own have contacted their local Epilepsy Foundation for assistance. In several communities, residential programs for people with epilepsy age 18 or older have successfully helped them make the transition to independence.

The Independent Living Program at the Epilepsy Foundation, St. Louis Region assists adults with epilepsy who want to move from their parents' home to an apartment, who may need help finding a roommate, or who want to one day own their own home. The program serves 230 people. It has operated for 10 years now. Its emphasis is on moving to independence.

One third of the program is funded through the local Foundation's own budget and the other two thirds is funded through county tax-based dollars.

"Our program offers a holistic approach for people with epilepsy who want to improve their condition," said Darla Templeton, executive vice president.

The Epilepsy Foundation of Rochester-Syracuse-Binghamtom in N.Y., started its residential program when a past president of the board called attention to the need. He had a sister with severe epilepsy who had limited choices about where to live. He suggested starting a program for people like her.

The residential services program includes "supportive apartments" where Foundation staff check in with residents about five or six hours a week. Residents get help with activities of daily living like banking, grocery shopping and cooking.

Howitt House and Wagner House are the part of the residential program that provides 24-hour supervision. In addition to activities of daily living, residents receive assistance with social skills, getting to the doctor, and taking medication on time. Some of these residents are older than those in the apartments.

Residents have epilepsy as well as other conditions such as brain injury or mental retardation. The program serves about 38 people is funded through Medicaid and through Social Security's Supplemental Security Income client contributions.

"Our program meets a wide range of needs, from the person who can live with limited assistance in an apartment, to the person whose condition has worsened and has no other place to go. We try to meet the needs of the whole person," said Sheila Appleby, executive director.

In the early 1980's, many adults with epilepsy whose seizures were uncontrolled and could not live alone were contacting the Epilepsy Foundation of Greater Cincinnati for help.

"Parents were getting older and dying, leaving their adult children in a difficult situation," said Margie Frommeyer, chief executive officer.

"We created four group homes for people with significant seizure disorders. Many of them also have other developmental disabilities," Frommeyer said.

Three of the group homes have eight adults with 24-hour supervision staffed in shifts by a home manager, a developmental disabilities professional who sets goals and a registered nurse. At the homes, residents learn independent living skills like cleaning, personal hygiene and socialization. During the day, they all go to work sites or to pre-employment programs.

The fourth home has eight older adults who have epilepsy and more physical problems. Because they are more impaired, they focus more on leisure activities than work. This home has the same supervision level and staffing pattern as the other three.

The program serves a total of 32 people. The funding source is Medicaid, according to Frommeyer.

Whether an adult child needs basic assistance from an apartment program, or more intensive care from a group home, Epilepsy Foundation residential services are a growing option for people with epilepsy who are moving away from mom and dad's protective wings.

The Epilepsy Foundation of Long Island also offers residential services to people with epilepsy who cannot live independently.