Amy and Seth Werbin have not taken a vacation since 1996. That was the year their son Jacob was born. Jacob has Down syndrome and his care, along with that of their other three children, has kept at least one parent home virtually every night for the past 14 years.
The Werbins got a much-needed complimentary night out together last year from the National Children’s Center’s Respitality Program, which gives primary caregivers of individuals with developmental disabilities a night in a hotel after dinner and an entertainment option, ranging from plays to comedy clubs.
“This is an incredible gift,” says Amy Werbin. “With [special needs parenting] comes a lot of exhaustion.”
Respitality is a National Children’s Center (NCC) program in its third year. It combines the concept of respite—a temporary short-term relief for caregivers of individuals with disabilities—with hospitality. Respite is an essential service that some caregivers get, which offers relief from the extraordinary and intensive demands of providing ongoing care in the home. NCC’s Respitality takes respite one step farther by not just paying for childcare, but by providing a hotel room and entertainment options for the caregivers—all at no charge.
Respitality is a donor-supported program open to anyone in the Washington, D.C. region who is caring for children and adults with developmental disabilities and receives services from NCC partners. The NCC began their “52 in 52” program last June, the goal for which is to provide a Respitality weekend for 52 caregivers in a year. Thaiia Reynolds of NCC reports that, through donations, the organization is about two-thirds of the way to its goal.
Many organizations and businesses have donated goods, services and money to the program, notably Marriott International, which pledged 52 Saturday nights in the D.C. area. The program is still searching for entertainment and restaurant packages to be donated in order to reach their goal, in addition to cash donations that are needed to cover care-giving costs.
NCC’s Respitality lets the recipient of the weekend choose the caregiver for their child, be it a friend, neighbor or a professional. This lets parents find someone they trust to care for their loved one, at the same time providing payment for that service.
Rossene Minard, the very first recipient of the Respitality program, says that she had difficulty finding people to watch her two teen-age children with disabilities. “No one wanted to take care of them because it was too much of a hassle,” she says. Consequently, it had been 12 years since she’d been away from them, until Respitality helped her by paying a caregiver while she was away.
Annie Alatishe, mother to a disabled 21 year old with schizophrenia, paranoia, traumatic brain injury, insomnia and seizures, says that she was initially resistant to the idea of Respitality. A single parent, she didn’t trust anyone to take care of her child. Because she could choose the caregiver, Alatishe felt comfortable enough to go away for a night. Afterward Alatishe reports, “I felt great and revived. I felt very uplifted. I wish I could have done it over and over.”
For families of typical children, the idea of respite may seem odd. Often the greatest obstacle for typical families is simply finding a babysitter, but for parents of children with special needs, it can be difficult to find a caregiver qualified to take care of their child. Even once such a professional is found, the added cost of paying for that expertise is often too much for parents already cash-strapped from the extra costs associated with parenting a special needs child or adult. It is typical in this community to find parents that haven’t been out of the house for an evening in years.
As a consequence, husbands and wives don’t have time together and single parents have no time to relax and take a breath. Sleeping in is often unheard of. Respitality aims to change some of this by not just giving these parents and caregivers a night off, but offering them some pampering in the form of flowers and a show. NCC customizes the Respitality weekends to the recipients as much as possible within the constraints of the donations.
“Most of the families have jitters about having a night off,” says NCC’s Reynolds. “For many, it has been years—if not a decade—since they have been out for simple enjoyment.”
These weekends give parents and caregivers a chance to recharge and return to their children with new energy. Many of the parents who go on a Respitality weekend report coming home re-energized, rested, and ready to take care of their kids again. These parents dearly love taking care of their children, but need a break now and again.
Sharon Harris is a single mother to Lauren, a 27-year-old daughter with cerebral palsy. She appreciates that NCC is looking out for parents. “It’s not often you hear of people thinking of the primary caregiver,” she says. Lauren has a caregiver during the day, but at night, after the caregiver goes home, Sharon and her boyfriend, Dennis Young, don’t have the opportunity to leave the house.
Harris and Young spoke about the program last June at a reception for NCC. After Harris spoke to a room of board members and donors about Respitality, Young took the microphone to say, “I served in Iraq.” He paused before pointing at Harris. “And this is my hero.”
NCC’s Respitality Program is seeking donations to help them provide this essential service to parents and primary caregivers of individuals with developmental disabilities. To donate, go to http://52in52campaign.eventbrite.com/. Potential donors of cash, goods or services can also contact the NCC directly by calling Thaiia Reynolds at 202-722-2364 or emailing firstname.lastname@example.org.