Easing the Burden
A case study in Respite

Priority Need

When a parent discovers their child has a disability, the adjustment isn’t a one time event. Rather, it is a lifelong process that includes periods of stress and uncertainty. For thousands of Western New Yorkers, respite has proven to be a vital service that improves their lives.

For many years, Carleen Wall endured up to 30 seizures a month. Now at 17 years old, she experiences about three a month. Still, her mother Diane says the worry never goes away.

"Even though the seizures are under control, that doesn’t mean the anxiety is gone," she said. "As I go about my daily activities, underneath part of me is always worried about when the next seizure will occur."

A student at Hamburg Senior High School through Erie 1 BOCES, Carleen has moderate mental retardation and a seizure disorder. Diane explains that for a parent of a child with a disability, stress and worry are constant companions. "To help people understand what it’s like, I compare it to raising a two- or three-year-old who never grows up," she said. "At times, the stress is unbelievable."

Restoring Balance

Through the years, Diane struggled to maintain her job, family and care giving responsibilities. It was particularly hard to find someone to provide temporary care for Carleen, even if it was just for a few hours. "My husband and I would want to attend our son’s hockey games, but it was nearly impossible to find a caregiver."

Then in 2000, when her daughter was 12, Diane discovered respite. Most people use the word respite to describe a brief delay or break. But for Diane and hundreds of other Western New York families, respite is a vital service that dramatically impacts their lives.

Respite is short-term care that helps a family take a break from the daily rigors and stress associated with caring for a person with a disability. According to the National Resource Center for Respite and Crisis Care Services, respite programs emerged in the late 1960s as a result of the deinstitutionalization movement with the belief that the best place to care for a child with disabilities was in the child’s home and community.

Carleen attends Aspire’s Audubon Respite Care Center for one weekend each month. Respite has proved to be an essential part of the overall support Diane needs to keep Carleen at home. It allows Diane to take a break from the daily routine and stress. She can relax, engage in everyday activities and improve her ability to cope with daily responsibilities. She is also able to spend precious time with her husband and son, as they do what she describes as "normal, family things together." This was particularly important during her son’s growing up years, as siblings of disabled children can often feel left out.

"I have peace of mind while Carleen’s at respite, because I trust the staff," said Diane. "I know she’s under good care because they understand her needs." That knowledge allows Diane to restore calmness and balance to her life. Then, when she picks up her daughter she is better prepared to care for her once again.

The Gift of Friendship

Respite is designed not only to give relief to caregivers, but also to enrich the lives of individuals with disabilities. It’s doing just that for Carleen. "I can’t find words to describe the difference it’s made in my daughters life," Diane said. "We have seen remarkable improvements in her behavior, as she has learned social and recreational skills. And as soon as she started attending respite, her seizures dissipated dramatically."

While at respite, Carleen socializes with other respite attendees and community members as they make crafts, bowl, watch a movie, visit the science museum or botanical gardens, play putt-putt, or hold a picnic at the park. Though Carleen enjoys these activities, respite means so much more in her life. It has helped fulfill her in a way that’s important to every child by giving her the opportunity to form friendships.

Diane recalls how Carleen would express disappointment when her brother attended sleepovers at friends’ houses. Now, Carleen no longer feels left out, as she has developed friendships with a group of peers who attend respite. "It’s like a sleepover to them," Diane said. "Carleen is so excited when it’s time to go to respite. She also loves spending time with the staff members, who play a role similar to an aunt and uncle figure in her life."

As Carleen approaches adulthood, she’ll likely wish to live more independently at a group home. Her teachers have emphasized that respite is growing her independence and readying her for this transition into life beyond high school.

A Vital Service

The Walls’ story of how respite has brought relief and restoration to their lives is shared by so many other families. From enriching the disabled child’s life to easing sibling relationships to strengthening marriages, respite’s benefits touch all aspects of the family structure.