Replace Worry with a Plan: Where Your Child Can Live When They Can't Live With You

By Regina Reid
EpilepsyUSA staff
Posted: June 27, 2003

Parental worry is not reserved for moms and dads of toddlers prone to falling or teenagers just getting behind the wheel.

Some of the most concerned parents can be those whose adult children live with epilepsy. Their fears for them go beyond the risks of scrapes or bruises, school bullies or misspent allowances. They worry about seizures when their grown children have moved out of the house to live alone. They wonder if their son or daughter will even be able to live independently and they wonder who will care for them when Mom and Dad no longer can.

There will likely come a time when parents whose adult children still depend on them will no longer be able to fulfill the role of caregiver. Some adults may be able to make the transition and live with relative independence. Others who may be more severely affected may need the assistance of a reliable caregiver. In either case, parents will want to have plans in place for their child's continued care.

There are several options to consider when planning an adult child's future in the absence of parental caregivers.

Family-type setting

A "family-type" living arrangement may be appropriate in situations where there is a family member or close family friend who can serve as a caregiver for the person with epilepsy. Friends and relatives will probably know the son or daughter better than anyone else and may be the best choices to help him or her in daily life.

If the child moves into the caregiver's home, decisions need to be made about whether he or she will pay rent and where those funds will come from. If a friend or relative moves into the parents home with the son or daughter, perhaps the caregiver can live there rent-free.

The family-type setting is perhaps the most common approach because it is considered the least disruptive to the individual.

Adult foster care

The adult foster-care arrangement is very similar to the family-type setting, however the caregiver is typically not a friend or relative but is instead a member of the community who has opened his or her home. The caregiver usually receives expense reimbursements from the government.

Adequate research is critical when selecting an adult foster-care setting. Potential caregivers, as well as the home itself, should be thoroughly investigated.

Continuity of care cannot be assumed in this situation to the degree that it can be in family-type settings. If the family should decide to discontinue as foster caregivers, the person with epilepsy would have to relocate.

Group Home

The group setting is perhaps the most frequently utilized alternative to living with immediate family.

Group homes can be owned by the state or by private corporations that may operate on a for- or not-for-profit basis. Both state and privately-owned facilities may require residents to pay only what they are able.

There are a variety of choices within the group home setting. Many group homes are indistinguishable from other residences in the neighborhood and are often referred to as "community care homes" or "community residences." Live-in managers or rotating staff may be present to prepare meals, administer medication and provide general assistance.

The community residence experience offers residents the opportunity for employment, education and integration in the community.

Intermediate-care facilities are more segregated from the community. These include nursing homes or other larger-care facilities for people with disabilities and those who have serious medical conditions requiring supervision by medical personnel. As with a community residence, ICF residents may either have their own bedrooms or share with a roommate.

When possible, it is generally advised that individuals move into a group setting prior to the death or disability of parents. This helps mitigate the stress of incurring two traumatic events - the loss of family and a change in living environment - at once.

Independent Living

Independent living is the ideal for those with relatively mild impairments or limitations. People in independent living arrangements live by themselves in a house or apartment. Family members, friends or other professional support may make occasional visits, but the resident has very little supervision.

Adults who have little or no trouble working consistently will benefit most from transitioning into an independent living situation.

Loneliness may become a factor for independent living residents who don't have the consistent social interaction as those living with family or friends or in a group home setting. Finding a house or apartment close to family or friends will help alleviate loneliness, as will living with a roommate.

Leaving their children is something no parent wants to think about. But taking the time now to plan and prepare for the future will make things easier when circumstances are forced to change.

For more information on how to plan for your child's future, visit the Epilepsy Foundation's online marketplace for a copy of Planning for the Future: Providing a Meaningful Life for a Child with a Disability After Your Death, or call (800) 213-5821.