For Families with Special Needs Kids, Respite Care Is Never “Often Enough”
When friends ask Michelle and Jeff Janidlo to get together for dinner or come to a party the Mountville couple turns them down. It’s not that they don’t want to socialize it’s because the Janidlos can’t leave their son at home by himself or with a sitter. Connor Janidlo, 13 has severe intellectual and development delays autism and seizure and movement disorders.
Going out to dinner or staying home with pizza and a movie is a rare treat. “We take respite care as often as we can get it which is never often enough” Michelle Janidlo said. “Anytime I hear the ‘R’ word I’m on it.”
The Janidlos take advantage of a respite program provided once a month at Lancaster’s Schreiber Pediatric Rehab Center. They also bring in at–home providers who stay with Connor while they go on a date or rare weekend retreat. “Last February was only the second time in Connor’s 13 years that we were able to get away for a weekend” Janidlo said.
“Taking a break from the kids” brings unique circumstances for the families of almost 2200 Lancaster County children with special needs. Many in addition to bedtime stories and tooth–brushing reminders also require one–on–one nursing care hygiene and tube feeding. There are 866 children in the county’s early intervention program; 840 have mental health concerns and 469 live with intellectual disabilities noted James Laughman executive director of Lancaster County Office of Mental Health.
Leaving your child with someone you don’t really know is difficult enough. When that caregiver needs to administer medication feed your child through a tube or give physical therapy, the anxiety multiplies tenfold.
Trust is a huge concern.
Laughman said finding occasional care for a child with special needs is a time–consuming process but is well worth the effort. “Families can cultivate a relationship with someone so they can be comfortable while the child is in that person’s care” he said.
Due to Connor’s multiple disabilities the Janidlos are eligible for therapeutic staff support and personal care assistance in their home and because their son is strong and has disability–related behavioral problems the Janidlos require more than one caregiver to work with him. “When he was younger” Janidlo said “he could be managed. Now he often requires two sometimes three people to be with him. … His strength is unbelievable.”
Through state programs the Janidlos are funded for 51 hours of care per week which comes by way of physical hygiene assistance feeding and behavioral training. In addition the couple brings in caregivers who are willing to visit Connor to provide respite time. Two of the women from the couple’s church have been visiting with Connor for about seven years. The other two are former “wraparound” caregivers who had worked with Connor when he was younger.
“They have struck up some sort of bond with Connor and they keep coming back” Janidlo said.
During Connor’s life they have been away overnight just twice — to Washington D.C. to visit a family friend and to another friend’s cabin. Often Janidlo said “we feel socially isolated. Our lives have been cut off by so many things. Everything is centered around Connor and Connor’s care.”
Christine Donnelly recognizes this social isolation and recently introduced special–needs respite care to her Ephrata business Nannies at Your Service. Donnelly said she has seen an increased understanding among moms and dads that they need a break from care–giving. “There are tons of people who just want to go out to dinner go for a walk but they have nobody to care for their child” Donnelly said. “If you have a child with autism we’ll say it could be too overwhelming for the next–door neighbor” and she said traditional caregivers often shy away from children with special needs.
“Every family’s requirements are different” Donnelly said noting that she takes extra care in matching a respite nanny to a special–needs family. All of her employees are certified as personal care assistants have full background checks and FBI checks but she said it takes a special person to care for a special–needs child. She looks for someone who is familiar with special needs and who understands the level of care and patience involved.
Jennifer Bachman director of Social Services with Schreiber Pediatric Rehab Center also understands the need for the parents to reconnect. “The divorce rate with families of children with special needs tends to be high” she said. “It’s very stressful. Mom and Dad need some alone time.” So at Schreiber she said they offer a once–a month respite care in conjunction with Lancaster General College of Nursing and Health Sciences.
From 5:30 to 8:30 p.m. one Friday each month nursing students and Schreiber staff care for children with special needs and their siblings so parents can de–stress. Children in the program which accepts ages 2 to 21 have autism physical disabilities and multiple disabilities. On an average night Bachman said there are 30 children enjoying one another’s company. “Parents get to celebrate anniversaries go shopping around the holidays go to dinner” she said. “The kids all get to play together”
Janidlo a stay–at–home mother who also works part time as an at–home medical transcriptionist and her husband who is with UGI Heating and Cooling said the Schreiber respite program has been essential to their sanity. “It’s three hours that we can drop him off and go grab a pizza” she said.
Cathy Hower a school social worker with IU 13 noted that a child’s needs determine the type of care he or she receives in a family’s home. Nurse’s aides assist with basic hygiene safety reminders or when the family needs a “mother’s helper” but a nurse’s aide can’t give medications or other medical care. Children who require next level assistance — oxygen use a feeding tube suctioning bathing or therapy — must be visited by a licensed nurse.
During the school year care for children with special needs is provided through a full–day IU 13 educational opportunity in a least restrictive environment LRE. The LRE provides the opportunity for the student to be educated with non–disabled peers as is deemed appropriate with his or her disabilities explained Tracy Stauffer a supervisor for the IU’s multiple disabilities support program. Sometimes this means having educators and support staff visit the student in their homes. The IU programs are staffed by social workers Stauffer noted so in some cases a nurse must accompany the child to school or in the home during educational opportunities.
In addition to the school–year care the IU offers an extended program for those students who qualify for the state–funded curriculum. The program — three hours a day for three days a week — ensures minimal regression of basic skills during summer months Stauffer explained. In addition many families make use of camps established for children with special needs such as Aaron’s Acres in Lancaster or Ephrata’s Camp Anchor.
Private insurance and medical assistance often cover nursing care for a child who meets state–mandated criteria said Laughman. They are carefully screened by the state in areas of vision hearing speech and physical and intellectual disabilities. Though day care is provided through IU 13 for overnight or weekend care families contract with a personal care service.